help started T3 - very low 2.1 but TSH is 0.05 - Thyroid UK

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help started T3 - very low 2.1 but TSH is 0.05

Chouchou1234 profile image
180 Replies

I started T3 and game changer for mood and energy . Also I can lift my arms and body!

just I have very bad leg swelling for me and gaining weight.

On 5mcg morning and night -

T4 - 75mcg

I feel

Terrible after t4 I go to sleep.

T3 is swelling my my whole body up like 3

Kilos water.

Help. Please

My t4 was 100mcg but could it be possible over medication for years and lowered my

T3?

my T3 is 2.1 and bedbound for 5 years.

now energy. When it wears off I get very very tired depressed big time. Worried it’s suppressed my normal T3 more as gaining weight quickly

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greygoose profile image
greygoose

Of course it is suppressing your 'natural' T3. Just like levo is suppressing your 'natural' T4 - in fact, they are both suppressing your thyroid's hormone production. That's what they're supposed to do. Thyroid hormone replacement does 'top up' your thyroid hormones produced by the thyroid, it replaces them. Your thyroid doesn't make enough to keep you well, anyway, so what does it matter? :)

T3 does not 'wear off'. It's not aspirin. It has a half-life of about 24 hours in the blood, but what gets into the cells stays there for about three days, and is constantly topped up by your next dose.

My t4 was 100mcg but could it be possible over medication for years and lowered my

We can only tell that by looking at your blood test results. But, why do you think that's a possibility?

Can you give us the range for your FT3? Ranges vary from lab to lab so we always need to see those that came with your results.

I really can't see why T3 would make your body swell, but that is a hypo symptom, as is weight-gain. It really doesn't matter about your TSH. Taking T3 is bound to lower it. But, what is your FT4 result and range? :)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi !

I’m Chelsea

Thank you ! I’ve been struggling for so many years .

But my legs have swelled and weight gain 3 kilos in 4 days

.

T3 2.1

T4 20

TSH 0.05

Thyroxine previously 100

Now thyroxine 75 mcg

T3 5mcg - morning night

Ferritin 35

Vitamin D 55 (will start vit d and k2)

Vit b12 476 (on co strong vit b )

Forceval vitamin

I had selenium and zinc test all good. Zinc was boarderline high

Iodine not tested

Severe constipation- to point of rectal prolapse

Bed bound pretty much last few years .

My t4 was coming back ‘normal’ but testing T3 it’s super low. 2.1 for past year .endo sent it off to Cambridge lab to confirm

Feel so much better on T3 as energy but swelling on legs and abdomen -

I have severe ‘neuroenteric’ disorder - my bowels don’t work - I’m hoping if I raise the T3 it will start working .

Thank you

I’ve been battling for years and no one was taking me seriously.

Finally !

Thank you

greygoose profile image
greygoose in reply to Chouchou1234

Could be the heat making you swell - it does me. And it doesn't help if you're under-medicated.

Constipation is something a lot of us get.

The best things to help are magnesium citrate and /or large doses of vit C.

Four things to think about with constipation:

1. Are you getting enough fibre? You need fibre for your transit, BUT you don't want too much fibre because it could affect the absorption of your levo, making you more hypo, and therefore possibly more constipated. It's a matter of finding the right balance.

2. Are you drinking enough water - especially in this heat wave. Your body needs a constant supply of water, and if it's not getting enough, it will suck your poo dry (sorry for that image!) to get the water, leaving you more constipated and unable to 'go'.

3. Do you have low stomach acid? Low stomach acid can be caused by being hypo, but also by low-salt diets and B12 deficiency (also old age, but not much you can do about that). Low stomach acid will cause constipation. So, you need to check your nutrients, and your stomach acid level (bicarb test), and if either are low, you need to raise them.

4. Do you, by any chance, have high levels of calcium? Because that, too, can cause constipation. So, that’s another thing that wants testing.

:)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

You are so kind. I have severe gastro issues so not absorbing

Love red meat will increase and liver. I do have very bad digestion absorption and can’t eat properly . I have pockets of paralysis in my bowels.

It’s only when I started T3 started getting leg swelling.

I drink a lot water and test u and e every 2 weeks kidney function over 90

I take laxatives prescription and weekly colonics to help. Now have severe rectocele and prolapse. I can’t take magnesium citrate due to acidic reactive gastropathy

My question is - could taking the thyroxine - as previously I was taking very large amounts to help my motility (self medicated ) and wondering by doing that just suppressed my T3.

Also I reduced thyroxine to 50mcg from 100 past few days as it was all to much I was getting even more tired! Whe I take t4 I’m exhausted and go to bed for a few hours. So is this sign of over medication?

My t4 is 20 and tsh 0.05

My endo said my main gland has shut down and my bmi is low - haven’t had period in I years. But not pre menopause

myMri done and no pituitary tumour.

Funny I have been chasing docs for test

Folate 23

Cholesterol high - but ratio is good 2.1

HDL is high

I love read meat but my small bowel is not working properly so I think nothing absorbing.

I’ve also noticed last few months loosing muscle but I have been bed bound until last week. Literally until T3 I was in bed 23 hours a day for years and years!

I’m so very grateful!

I have been

Fighting for years!!

No antibodies - I’ll

Look up test results tomorrow

Forceval and vit b co strong by gp also have thiamine

I take milk thistle and NAC for liver detox

I’m so thankful

Chelsea

greygoose profile image
greygoose in reply to Chouchou1234

My question is - could taking the thyroxine - as previously I was taking very large amounts to help my motility (self medicated ) and wondering by doing that just suppressed my T3.

Suppress it, absolutely not. T4 is basically a storage hormone which doesn't do much until it is converted to T3, the active hormone.

If your FT4 is too high, that might down-grade your conversion, but not to the point of suppression, no.

What do you call 'very large amounts'? You mention 100 mcg, that is not a large amount, that is quite a small amount. Did you get your thyroid levels tested during your period of self-medication?

Also I reduced thyroxine to 50mcg from 100 past few days as it was all to much I was getting even more tired!

That's too large a reduction in one go. Levo should only be increase or decreased by maximum 25 mcg every six weeks.

Whe I take t4 I’m exhausted and go to bed for a few hours. So is this sign of over medication?

No, it's not. It might be a sign of under-medication. But, under or over-medication is a question of FT3 levels, not how much levo you're taking.

My t4 is 20 and tsh 0.05

You still haven't given us the ranges. Ranges are usually found in brackets after the result - e.g. (12-22). Results are meaningless without the ranges.

My endo said my main gland has shut down

What does he mean by 'main gland'? There are lots of hormone-producing glands in the human body, but I'm not aware of any one of them being the 'main' one.

myMri done and no pituitary tumour.

So, is he talking about the pituitary when he says 'main gland'? If the pituitary had shut down, you'd be dead. In fact, I think you'd be dead if any of your glands had shut down.

Why did you have an MRI on the pituitary? Has your TSH always been low, even when your thyroid hormone levels were low?

Cholesterol high - but ratio is good 2.1

Well, it would be if your FT3 is low. Forget the ratio, it's meaningless. Cholesterol is a huge red herring, it's not the problem doctors make it out to be. I do hope you're not taking statins?

Forceval

This is really, really the wrong thing to take. For all sorts of reasons.

Lets have a look at the ingredients:

There are 12 vitamins in Forceval Capsules:

Vitamin A (as β-Carotene) 2500 iu

(Retinol Equivalent) (750 micrograms)

Vitamin D2 400 iu (10 micrograms)

Vitamin B1 (Thiamin) 1.2 mg

Vitamin B2 (Riboflavin) 1.6 mg

Vitamin B6 (Pyridoxine) 2.0 mg

Vitamin B12 3.0 micrograms

Vitamin C 60 mg

Vitamin E 10 mg

Biotin 100 micrograms

Nicotinamide 18 mg

Pantothenic Acid 4.0 mg

Folic Acid 400 micrograms

There are 12 minerals and trace elements in Forceval Capsules:

Calcium 108 mg

Iron 12 mg

Copper 2.0 mg

Phosphorous 83 mg

Magnesium 30 mg

Potassium 4.0 mg

Zinc 15 mg

Iodine 140 micrograms

Manganese 3.0 mg

Selenium 50 micrograms

Chromium 200 micrograms

Molybdenum 250 micrograms

Vitamin B12 3.0 micrograms

If you are deficient in B12, 3 mcg is not going to do a thing for you. You'd need more like 1000 mcg. Plus, it doesn't say which form of B12 it is.

Vitamin C 60 mg

And, vit C will stop the action of B12 in the body, anyway. They should be taken at least two hours apart.

Biotin 100 micrograms

Did you know that if you are taking anything with biotin in it, it should be stopped a week before any blood test? Because it can skew the results.

Folic Acid 400 micrograms

Folic acis is synthetic folate. Methylfolate is much easier to absorb.

Calcium 108 mg

Highly unlikely that you need calcium. And taking calcium supplements is a very bad idea unless there's no alternative. It's very difficult to absorb and tends to build up in the arteries and soft tissues.

Iron 12 mg

BUT you won't be absorbing the calcium anyway, because it will bind with the iron! lol In fact, with iron in the mix, you probably won't absorb very much of anything. Iron should be taken on its own - apart from vit C - at least two hours away from all other supplements.

Copper 2.0 mg

Zinc 15 mg

Copper and zinc need to be kept balanced, it's true. But, hypos are usually high in one and low in the other. They should both be tested to make sure.

Zinc shouldn't be taken with iron either. Nor should it be taken with magnesium.

Magnesium 30 mg

They don't say what form of magnesium - always be suspicious of products that don't provide you with all the details. So, it's probably the cheapest and least absorbable.

Iodine 140 micrograms

This is an absolute no-no for a hypo. Excess iodine can be dangerous. And, you're already getting about 65 mcg iodine from your 100 mcg levo - plus what you get from your food. Iodine is recycled in the body, which is why you don't need much of it daily. And, if you're on thyroid hormone replacement, and your thyroid isn't making thyroid hormone anymore, you need less iodine, not more.

So, all in all, total waste of money. Supplements will only do you any good if you need them. More is not better. So, the best thing is to get your vit D, vit B12, folate and ferritin tested, and supplement accordingly, taking only what you need.

grey goose - any connection to the beverage

Absolutely not.

Chouchou1234 profile image
Chouchou1234 in reply to Chouchou1234

Thank you again Sorry to take so much of your time . I really do appreciate it.

First time in years someone has been knowledgeable to explain to me so thank you .

From my Endo letter

Persistent low T3 levels. It is possible her symptoms are due to low T3 levels caused by dehydrogenase deficiency

No clue what that means .

I saw antibodies negative and TPO negative

Folate 15.3

Vitamin d dropped from 98 to 55 (November to April)

My T3 was 3.5 in November but 1 months later 2.1 - continuous . I was on lower t4 50 mcg I think.

I will contact gp tomorrow for ranges .

They refuse to test reverse T3 as endo said treatment is the same.

I will take advice re vitamins thank you . Very helpful

Thank you again I will go though my papers tomorrow.

Why would my T3 be so low?

By increasing vitamins and T3 more ?

Thank you

I will ask for new set tests .

Thank you

Re gland - he mentioned

hypothalamic dysfunction from memory

My bmi at one point was very low.

Thank you.

Appreciate your time

greygoose profile image
greygoose in reply to Chouchou1234

It is possible her symptoms are due to low T3 levels caused by déshydrogénase deficiency

Well, of course symptoms are caused by low T3. lol

As for dehydrogenase deficiency, I'm not expert, but I haven't a clue what he's talking about there. Dehydrogenase is an enzyme that removes an atom of hydrogen from any given molecule. But, as far as I know, there is no hydrogen in thyroid hormones - someone correct me if I'm wrong? It's far more likely that it's a deiodinase deficiency - if such a thing exists - because one molecule T4 has 4 atoms of iodine and to convert T4 to T3, one atom of iodine is removed by an emzyme called a deiodinase.

But, of course, it could just be low because you aren't taking enough T4! 50 mcg is only a starter dose.

But, that won't apply if you're actually taking T3. If your FT3 is low when taking T3, then it's because you're not taking enough T3.

They refuse to test reverse T3 as endo said treatment is the same.

The treatment has nothing to do with it. There's no point in testing rT3 because it's a very expensive test, and doesn't give you any information that you can't get from just testing FT4 and FT3 - i.e. how well you convert.

An rT3 test will tell you if your rT3 is high, but it won't tell you why, and there are many, many causes of high rT3, only one of which has anything to do with thyroid. Your rT3 will be high if you have an infection, for example, or if you aren't eating enough calories. Or for many, many other reasons.

rT3 is a complete red herring, so I really wouldn't worry about that, if I were you.

Re gland - he mentioned

hypothalamic dysfunction from memory

Ah, ok, I see what he's on about. The hypothalamus is the gland that tells the pituitary to make TSH. So, because he couldn't find a tumour on the pituitary, he assumes that the fault lies with the hypothalamuse. Well, you can't just make that assumption. You don't have to have a tumour on your pituitary for it to malfunction. There are other causes. And the only way to find out if the fault lies with the pituitary or the hypothalamus is to test some of the other pituitary hormones. So, his assumption sounds to me like lazy doctoring: he can't be bothered to test the other pituitary hormones!

Have you ever had any sort of cortisol/adrenal testing?

But I don't see what your low BMI has got to do with anything...

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi there - Thank you for all your help.

It’s been such a journey to get here.

I just checked my last readings

May readings

On thyroxine 100mg

T3 2.2 range (4 to 6.8 )

Back in September October my T3 was 3.5 - I was on lower dose I think t4 50mcg to75mg why is it higher?

TSH 0.05 (0.27 - 4.2)

T4 19 - (12 to 22 )

Folate has dropped to 11

Calcium 2.4 (2.2 -2.6)

T3 is brilliant for mood but I worry I’m going to make my natural T3 stop.

This morning before I took it I couldn’t stand up to go to the toilet at all to get water .

greygoose profile image
greygoose in reply to Chouchou1234

T3 is brilliant for mood but I worry I’m going to make my natural T3 stop.

Well, as I said before, of course your 'natural T3' will stop! I explained all that. And, as I said, so what? If you're taking T3, you don't need your thyroid to continue making it. It wasn't making enough, anyway, because you're hypo. I really don't undstand why that worries you.

May 2022 on 100 mcg T4 only

TSH 0.05 (0.27 - 4.2)

FT4 T4 19 (12 to 22 )

FT3 2.2 (4 to 6.8 )

That shows very poor conversion. Isn't that why your doctor put you on T3?

Back in September October my T3 was 3.5 - I was on lower dose I think t4 50mcg to75mg why is it higher?

Why is your FT3 higher on 50/75 mcg levo than it is on 100 mcg? Because your FT4 is now too high.

I'll try and explain:

T4 converts to 30% T3 and 30% rT3 (the rest is disposed of in various ways).

When your FT4 level gets too high, the body starts converting it to more rT3 and less T3.

This is a safety mechanism to stop you going 'hyper'. But if you're already a poor converter normally, you will become a worst converter when your FT4 is too high. So, you end up with lower levels of FT3.

That's just a very rough explanation to keep it simple and easy to understand. I don't really know how much you know about the thyroid and its workings. :)

So, the only thing one can do, when on thyroid hormone replacement, is to reduce the levo and add in T3. But, you need to take enough T3 to make the levels rise. And you have to take it correctly. Do you always take it on an empty stomach and leave at least and hour before eating, etc.? Just like levo?

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you . That makes sense yes I take empty stomach etc no food coffee supplements.

My digestion is poor.

I still can’t get my head around the swelling bloating is bad and nausea is horrific pst 2 days when I take it

Is that normal ?

greygoose profile image
greygoose in reply to Chouchou1234

It's not what usually happens, no. But, I imagine you have low stomach acid, that causes pain, bloating, nausea, constipation, etc.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Last week after I started my CRP went through the roof to 27! I was in hospital not feeling well. That was 2 weeks after starting. It then came down to 7 (normally 0.1 or 2.5)

Unless it’s a coincidence or wondering the T3 is causing inflammation.

I have asked for re test .

My concern is I’m using t4 which is down regulating my t3 and when I use t3 inflammatory response.

greygoose profile image
greygoose in reply to Chouchou1234

As far as I know, T3 does not cause inflammation, no. Quite the opposite, in fact.

T4 does not down-regulate your T3. It's just that you are a very poor converter of T4 to T3.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you for this. Yes I re read the letter the secretary must of made mistake.

Sorry error in last message in October I was on 100mcg t4 but was on 50 previously and had just raised it

I do get a slight ‘choking’ feeling not sure that’s related.

I have an upcoming appointment with endo the end of the week .

what do I need to ask as what’s the ideal level to be on .

Is t3 catabolic? I have very limited muscle right now and struggling .

I have asked for new blood tests again.

Thank you

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Makes no sense why I’m

Putting on weight so quickly .

3 kilos in a week.

Also tinnitus goes nuts

I read other people putting on weight with T3

Also t4

I have put on weight with t4

I have bad dysmorphia so this is very triggering.

greygoose profile image
greygoose in reply to Chouchou1234

I'm afraid this thread is getting very confusing with all the different replies. I'm totally lost now. It would be a good idea - for everybody - if you could make a time-line thus:

Date/Dose/other medications/supplements taken

TSH result (range)

FT4 result (range)

FT3 result (range)

Any other tests done at that time: results (ranges)

Symptoms.

That way it would be all much clearer. :)

FancyPants54 profile image
FancyPants54 in reply to Chouchou1234

Milk Thistle - used to bind to T3 and help reduce a hyper over medicated episode. I really don't think you should be taking that at all with a diagnosis of hypothyroidism. You could be making things worse.

Chouchou1234 profile image
Chouchou1234 in reply to FancyPants54

Really? Ooo I take 4 x 400 a day mill thistle and NAC ! Thank you 😊

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Sorry to reply - calcium all in rangeNot sure re acid will test.

Water- I’m drinking a lot

Test my u and e every 2

To 3 weeks to

Make sure xx

Thank you

grey goose - any connection to the beverage? X

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi This makes no sense I’ve put more weight on today with t3. My legs have blown up by 3 inches and so uncomfortable

Could my body be putting in some defence thing to stop it going hyper .

In a week eating less and shot up 4 kilos. Legs up 3 inches . This isn’t normal .

greygoose profile image
greygoose in reply to Chouchou1234

Yes, I told you about the 'defense thing': increased conversion to rT3. But rT3 would not make you swell up and put on weight. rT3 is inert. As far as I'm concerned, there are hypo symptoms, because your FT3 is too low.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

But why has this started with T3 ? I didn’t have this before I started it ? Is my body thinking it’s going to starve or something and trying to hold onto everything .

greygoose profile image
greygoose in reply to Chouchou1234

If the body thinks it's going to starve, it holds on to fat, not water. Your problem at the moment is water retention.

When did you start T3?

Are you getting enough salt?

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi I took my evening dose and can’t handle the bloat also feels like im choking at the bottom

Of my Neck and hurts swallowing . Maybe it’s a vascular thing .

I have been making sure I’m on top of my Salt and potassium with u and e blood tests every 2 weeks.

I’m very thin so this bloating is extremely noticeable and extremely uncomfortable. Is it possible that this toxic for me. I’m totally floored with this.

greygoose profile image
greygoose in reply to Chouchou1234

That what is toxic? T3? Could be the fillers don't agree with you. Have you tried different brands?

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Good morning Something is not working properly I have put on 2 kilos in 2 days and my legs look like they have extra fat on them . 3 inches bigger . Also I took t4 this morning and extreme tiredness when I take it . Can’t keep my eyes open . Last night with T3 I was bloated so badly couldn’t sleep .

greygoose profile image
greygoose in reply to Chouchou1234

I think everyone is swelling in this hot weather, but I sincerely doubt it has anything to do with the T3. It doesn't make anybody else swell. I've been taking it for years and years, and have lost weight.

I think the problem is, you're just not taking enough of it, and you are still hypo. Your FT3 is much too low. Of course it won't 'work' properly if you don't take enough of it.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

I’m reading other people get weight gain on T3,

What if I reduce T4 and raise t3?

greygoose profile image
greygoose in reply to Chouchou1234

I doubt that would make much difference to anything. But you could try, why not. If you feel worse with the lower FT4, you can always raise the levo again.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Sorry to ask / Woykd this not explain my zero peristalsis motility if I’m 2.1 T3 ? Or does the t4 account for that ? Im confused . I’ve seen gastro for 4 years and I can’t eat properly starving as no motility

If I upped the T3 would that help me get food through ?

greygoose profile image
greygoose in reply to Chouchou1234

Yes, it would. As I think I said before, T4 is basically a storage hormone that doesn't do much until it is converted into T3.

And, as I said before, you stomach acid is probably very low. Doctors never think about people having low stomach acid, they assume that those with problems have high stomach acid. They don't realise the problems caused when it is low.

Increasing the T3 would help yes, but you do need to address your stomach acid.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Reading your messages - If my T3 was higher 3.5

3.5 - in October and

TSH 0.02

T4 23 (12 to 22)

My T3 dropped to 2.1 with I think higher dose t4 but my t4 is less (20)

Does that mean my body is just putting the brakes on etc as you explained . Could I be over medicating ?? That’s my thought as if my body is putting on the brakes and lowering my T3 then I’m taking T3 to over ride it it’s just going to make my T3 shut down completely

I have gained weight on my legs definitely and lost muscle while on T3 and swelling is terrible. I measure them there is a 2 inch change from morning . It’s not in my head .

My thought is my body is putting on the brakes and making me gain weight as a protection.

A week after taking it I was taking 15mcg for 3 days and that’s when I went to hospital with extreme CRP 27 - night before sweat was streaming of me non stop (thyroid storm) ??? - I went in as was not well with prolapse. They refused to test at hospital

Today I didn’t take full dose in morning and have been in bed and can’t even stand up.

I have an event tonight so took 2.5mcg and swelling started immediately and severe headache. Throat thing started . Feels like I’m choking .

Appetite- does T3 make you ravenous ?

greygoose profile image
greygoose in reply to Chouchou1234

Does that mean my body is just putting the brakes on etc as you explained .

Yes.

Could I be over medicating ??

Not exactly. Taking too much T4, yes. But yes, but you're a poor converter, so you're not over-medicating in the sense that your FT3 is too high. Your symptoms are not from over-medication, they are from under-medication.

That’s my thought as if my body is putting on the brakes and lowering my T3 then I’m taking T3 to over ride it it’s just going to make my T3 shut down completely

I really, really do not know what you mean by 'shutting down your T3'. If you mean that your thyroid has stopped producing it, then yes, of course. But it was going to do that anyway.

Your body is not putting the brakes on because your FT3 is too high, but because your FT4 is over a certain limit (a limit that is different for everyone, so no specific number). The mechanism that carries that process out does not recognise the level of your T3, only the level of your FT4. So, your T3 will drop whether it was too high or not.

With an FT3 as low as that, you are still technically hypo. You need it higher for the good of your general health. It's got nothing to do with over-riding the mechanism or shutting down your T3 - whatever that means. The only consideration is taking enough T3 to make you well. And at the moment you are not doing that. Which is why you have symptoms.

I have gained weight on my legs definitely and lost muscle while on T3 and swelling is terrible.

Because you are still hypo.

My thought is my body is putting on the brakes and making me gain weight as a protection.

Sorry, but that's wrong. That's not how it works.

A week after taking it I was taking 15mcg for 3 days

You started on 15 mcg? No wonder it made you ill. You should start on 5 mcg for at least two weeks, then slowly increase.

and that’s when I went to hospital with extreme CRP 27 - night before sweat was streaming of me non stop (thyroid storm) ???

No.

- I went in as was not well with prolapse.

Prolapsed what?

Today I didn’t take full dose in morning and have been in bed and can’t even stand up.

You're under-medicated, so not surprising.

I have an event tonight so took 2.5mcg and swelling started immediately and severe headache. Throat thing started . Feels like I’m choking .

In that case, it must be the fillers in the tablet. I've never heard of the hormone T3 doing that. And, 2.5 mcg is too small a dose to have any effect. Unlikely the hormone would have an immediate effect, anyway. It will be in the blood after a couple of hours, but it doesn't do anything in the blood. It's not active until it gets into the cells, and that doesn't happen immediately. So, it has to be the fillers you're allergic to.

Appetite- does T3 make you ravenous ?

It can do, yes. Very often people lose their appetite when they're hypo, so taking T3 will restore the appetite. You were probably under-nourished before and now your body is making up for it. If you're hungry, you need to eat.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

I just took 25 mcg of t4 as only took 50 this morning and 2.5 mcg of T3 and feel blown up bloated already within minutes- maybe I have vascular condition?

greygoose profile image
greygoose in reply to Chouchou1234

Pretty sure you must be allergic to one of the fillers. Because 2.5 mcg of the hormone, T3, is not enough to do anything.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you 🙏 My Doctor had put me on 10 mcg a day after day 7 I went up to 15 and 20 mcg for 3 days thinking it would help as I was so tired.

I went into hospital as need help with rectocele prolapse .

After that I reduced to 2.5mcg twice a day - my stomach peristalsis has got alot worse - could that short period of time lowered my natural T3 even more and made worse ?

Nothing is moving through my small bowel and even peeing is a problem . Is this all severe low T3?

Thank you for all your help

greygoose profile image
greygoose in reply to Chouchou1234

I do not understand why you keep going on about your 'natural T3' I doubt your thyroid has produced much of anything for quite some time. You didn't have an 'natural' T3 to begin with. That's why your endo put you on T3 tablets - of course, he started you on too high a dose, and then you increased too quickly, so not surprising you have problems.

As I keep saying, your stomach acid is bound to be low, and that will have a knock-on effect on your gut.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi ! Thank you for the replies

I spoke to endo today and doing new tests.

I no longer have nausea and head aches etc . I don’t feel as much energy anymore. It doesn’t last long at all. Then back in bed.

What would be an ideal amount to get T3 up.

Am I correct

2.1 T3 is insanely low. Target of 6.5?

Yesterday I took less t4 50mcg and didn’t get huge leg swelling.

Can I ask my digestion is not working at all.

I read hypothyroid affects bile etc and during the night T3 must of wear off and complete paralysis of my bowel.

I even went for colonic and there was zero peristalsis to the point I was just filled with liquid .

Can you advise re gallbladder function I have had liver tests and slightly elevated but dysmotility is at its worst

Regarding dose

I asked to increase but he is hesitant I explained when it wears off I feel like I’m paralysed. Can’t even stand up.

Could it be when it wears off or gets low in the cells this is causing very bad zero peristalsis.

I’m hardly eating anything and gaining weight since on T3

Thank you again

greygoose profile image
greygoose in reply to Chouchou1234

What would be an ideal amount to get T3 up.

Am I correct

2.1 T3 is insanely low. Target of 6.5?

The ideal amount of T3 is the one you need, and no-one can tell you what that would eventually be. You have to start low and work up slowly until you feel well.

There is no target. As I said above, you need what you need and you have to find out what that is by trial and error. I don't know what the ranges is, so I can't say if it's insanely low, but if the bottom of the range is 3.1 - as it often is - then, yes, it is insanely low, and that's why you're having all these problems.

Can I ask my digestion is not working at all.

Low stomach acid.

I read hypothyroid affects bile etc and during the night T3 must of wear off and complete paralysis of my bowel.

As I said before, T3 does not 'wear off'. It's not aspirin. The half life of T3 in the blood is about 24 hours. But, what gets into the cells is active for about three days.

Can you advise re gallbladder function I have had liver tests and slightly elevated but dysmotility is at its worst

Ask for an ultrasound on your gallbladder function. You may have stones. Hypos often have to have their gallbladders removed because of stones, but you can live perfectly well without a gallbladder - I do.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hello

Thank you

I had ultrasound and tests and no stones.

I tried HCl and had very bad burning .

Do I need t4 if it’s not converting ? Would it better to be on dose of T3 and low t4 . I don’t know how this works .

What is the best to test / do test 24 hours after dose re T3?

What concerns me I wake up in the morning ‘in a coma’ it’s so bad , best to blood test then?

Thank you

Im so grateful

I can’t believe I’ve been bed bound for years and only started feeling better since T3 . Unbelievable.

greygoose profile image
greygoose in reply to Chouchou1234

I tried HCl and had very bad burning .

Have you tried apple cider vinager?

Do I need t4 if it’s not converting ? Would it better to be on dose of T3 and low t4 . I don’t know how this works .

Only you can answer that question. Some people do, some don't. You have to find out what's right for you by experimenting with your dose.

What is the best to test / do test 24 hours after dose re T3?

You need:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

8 to 12 hours after T3

24 hours after T4

What concerns me I wake up in the morning ‘in a coma’ it’s so bad , best to blood test then?

Then you probably have low cortisol. Have you had that tested?

I can’t believe I’ve been bed bound for years and only started feeling better since T3 . Unbelievable.

Not surprising because you had very low T3. T3 is the active hormone that causes symptoms when it's too low. :)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you so much for all your support and help . I have been navigating this by myself

Thank you

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi

I was in hospital all day.

They were useless. They want to cop out and give me feeding tube which is ludicrous. They can’t be bothered to investigate further .

So I am left to my own devices .

Crp and blood count all back to normal .

Bone profile magnesium good LFT good

Re iron -

I will increase meat and liver etc but regarding supplements? I can’t take iron due to constipation.

Any suggestions?

I’m experiencing putting on weight so quickly the past 2 weeks. Eating much less - added T3 so I would presume it’s Speeding ⬆️ up. Fat has low accumulated on my legs quickly - I have very low muscle mass due to being In bed for so many years.

I checked sodium potassium that’s all fine . Kidney function over 90

Thank you again xxxx

greygoose profile image
greygoose in reply to Chouchou1234

I will increase meat and liver etc but regarding supplements? I can’t take iron due to constipation.

Have you tried taking 1000 mg vit C with your iron?

They say that the best way to increase ferritin is to eat liver once a week. But, even if you are getting your iron from food, it needs a source of vit C eaten at the same time to help absorption. Potatoes are a good source of vit C.

Fat has low accumulated on my legs quickly

Fat does not tend to accumulate on legs. And it certainly doesn't increase quickly. What you have is more than likely water-retention/mucin/lymphodemia due to low T3.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Please help I took T3 morning and half evening dose early. It’s made my

Stomach paralysis ten times worse I’ve bloated up so much nothing is working. It’s seriously bad. I have put on kilos in 12 hours . I’ve taken magnesium citrate at 8am and nothing . 1/2 teaspoon and lots of water .

I noticed this before I thought it would speed things up it’s having the opposite effect. Could my

Body be shutting down. It’s beyond a nightmare

greygoose profile image
greygoose in reply to Chouchou1234

Are you saying that your stomach is bloated or that you are constipated?

How much is 1/2 a teaspoon of magnesium citrate?

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Both - constipated no peristalsis bloated . I notice this . When I take T3 it’s a twinge and then gets drastically worse. Could my natural T3 dropped so everything stopped. 1tsp 375mg -

Plus take 15 dulcolax - I didn’t take laxatives last night as ran out I normally take 20 anyway .

no peristalsis plus 3 kilos extra -

I have had fresh green juice - I always go to toilet after that

2 litre water

Some bone broth

My potassium was 4.5 yesterday

A smoothie with berries and protein.

Strong strong coffee very strong

This is insane

greygoose profile image
greygoose in reply to Chouchou1234

Could my natural T3 dropped so everything stopped.

As I keep telling you, of course your thyroid has stopped making T3, that's why you're taking T3. It doesn't mean that everything has stopped. You have to stop being obsessed by 'natural T3', because that's not the problem. The problem is more than likely low stomach acid.

375 mcg is not a particularly high dose of magnesium. You could try taking 1 1/2 tsp.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi I have just spoken to 111. - I think I have found the problem!!

I had bloods taken yesterday re thyroid

He gave them to me over the phone

T3 2.5 ( 4 to 6.8)

T4 dropped to 11! (12 to 22) last time was 19

TSH 1.5 was 0.02

I had reduced t4 and with gastro problems no absorbing .

Could this explain the zero motility and swelling and weight gain?

Please help I can’t go to hospital tonight

I have 100 and 50mcg thyroxine I can take that?

You were right all

Along with under dosing.

Literally stomach paralysis!!

Feel like a hug 🤗 -

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi ! Sorry another message

So does this explain my

Crazy weight gain swelling zero peristalsis etc xx ????

I just took 150 mcg thyroxine the doctor could not advise and I am beside myself I can’t take more laxatives

I was at hospital yesterday and begging them the check my T3 and t4 but they were too busy.

Panicking a bit now but already feel better and an answer why it’s got so bad

I will

Contact endo Monday.

I just went to the toilet ! I can hear peristalsis! Yippeeee!

Could it be aswell is so rubbish I have not been absorbing?? . I mean that’s a drastic drop?

Could T3 be affecting the t4 but I don’t take them together!

greygoose profile image
greygoose in reply to Chouchou1234

Well, you are grossly undermed icated to have levels like that. And, yes, that could be the cause of the problems.

No, T3 does not affect T4 except causing the FT4 level to drop. But, you're still getting some T4. Doesn't matter if you take them together or not. But, in any case, T4 is the storage hormone. T3 is the active hormone. You need that FT3 a lot higher.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you ! So this explains a lot?

Sorry I didn’t understand

does T3 make the t4 drop?

So I asked my endo to

Increase T3 ? He was hesitant but this is a good case!

So

My symptoms will get better with higher T3 ?

It will weeks until emergency appointment he scheduled for a month- what do you suggest

5 mcg 3 x a day)

I’m in such a panic as I am left to my own devices . I can’t carry on with these zero metabolism .

I can’t believe they were trying to

Force an NG tube instead of looking at my

Thyroid!!

Thank you for you help.

greygoose profile image
greygoose in reply to Chouchou1234

So this explains a lot?

This does explain a lot, yes.

does T3 make the t4 drop?

Taking T3 makes the FT4 level drop to a certain extent.

So I asked my endo to

Increase T3 ?

Yes.

My symptoms will get better with higher T3 ?

They should do, yes. But, you also have to address your low stomach acid.

what do you suggest

5 mcg 3 x a day)

Depends what you're taking now. I've forgotten and I can't look back to find it because the thread is in such a muddle - answers all over the place that don't follow any logical order. I did ask you to do a time line, to make things clearer, but you didn't.

I can’t believe they were trying to

Force an NG tube instead of looking at my

Thyroid!!

They never think thyroid is the cause of anything - except when it suits them. And, then, thyroid is to blame for everything!

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

With these horrendous results - Can I put my case forward for increase T3? And t4?

It is ok I took 150 tonight right? Tomorrow back to 100?

What do you suggest?

What do I take to bring t4 up?

X

Thank you again

Absorbing issues small bowel

?

greygoose profile image
greygoose in reply to Chouchou1234

Yes, it's ok you took the 150 mcg levo tonight. It won't do you any harm. If I were you, I'd concentrate on the T3 first. You can increase that by 5 mcg, wait a couple of weeks and see if you feel the need to increase again. Titrating T4 can come later. :)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi not sure previous message go through -Could the T3 be lowering t4 I don’t know 🤷‍♀️ how to kick start everything.

Xxx

If I take T3 tonight too? Or too

Much?

greygoose profile image
greygoose in reply to Chouchou1234

You can't 'kick-start' anything. Everything hormonal has to take its time.

Yes, take T3 tonight.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Great thank you. I took t4 200. Mcg I panicked and took 50mcg more am I going to push T3 down??

Took T3 5mcg - tonight

T3 is a game changer.

Went to toilet finally and peristalsis!!

What should I do tomorrow?

Can you explain how it works -

Why is it got worse by taking T3. Is it because level is not high enough?

Have I screwed myself again by taking too much t4?? Is that why I’m swelling tonight again? I’ve put on 3 kilos in 2 days.

I’m all alone and no one to rely on to ask.

The gp is useless

111 doctor said ‘I’m fine’ it’s not that bad

Hospital just told me to have feeding tube and didn’t even bother to look at thyroid.

Do I Start taking 3 x5 mcg T3?

How much t4

If t4 is not converting am I just pointlessly taking t4 ?

Thank you 🙏

I will get the other bloods done tomorrow

greygoose profile image
greygoose in reply to Chouchou1234

Great thank you. I took t4 200. Mcg I panicked and took 50mcg more am I going to push T3 down??

Normally, one should only increase by 25 mcg every six weeks. You've got to stop panicking! Go back to 200 mcg today.

It depends on your FT4 level whether that will affect your conversion (push T3 down). And, I've no idea what that is anymore.

What should I do tomorrow?

Go back to your normal dose of levo - 200 mcg you say?

Take your normal dose of T3 plus 5mcg.

Can you explain how it works -

How what works? Which particular bit?

Why is it got worse by taking T3. Is it because level is not high enough?

Possibly.

Have I screwed myself again by taking too much t4?? Is that why I’m swelling tonight again? I’ve put on 3 kilos in 2 days.

I very much doubt you've screwed yourself up. I have no idea why you're swelling, probably the heat. It's water retention.

If t4 is not converting am I just pointlessly taking t4 ?

Only you can answer that question. You're the only one living in your body.

I will get the other bloods done tomorrow

Absolutely no point! They won't tell you anything because too much chopping and changed recently, plus the extra 50 mcg you took yesterday. You need to be on a steady dose for at least six weeks to get meaningful results.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

I’mSo confused!

I now feel so tired heavy unbearable after t4 . It’s like my body shuts down exhausted.

Could T3 be stopping t4 so

Not to go hyper ? Putting the breaks on. As when I take T3 I get energy one

Hand but unbearable weight gain and bloating ! Could this be too much?

I’m exhausted and terrified tonight. I can’t go through another night of zero motility. I want to eat but can’t digest.

I’ve

Swelled up again terribly .

Please

Help

greygoose profile image
greygoose in reply to Chouchou1234

Could T3 be stopping t4 so

Not to go hyper ? P

No. That's not how it works. It's the other way round.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi I took total 225mcg t4 today.

5mcg t3 tonight

What do I so tomorrow? I panicked and took too much t4

I’m

Beyond bloated and water retention. Is that from to much t4

Have I created toxic load.

Why has my t4 dropped

Would that be why I’ve been

Putting on weight swelling as all I have done slightly reduced t4 and added t3. I thought it would have the opposite effect!

Please can you explain to me

Have I pushed my t3 down by taking high dose t4 today?

I’m very confused why t4 dropped so

Much but if it is the inactive form does it matter? Why has tsh shot up?

Does this mean I have gone much worse hypo ?

I thought by adding t3 it would help but seems I’ve got worse.

Olease explain as I can’t get any worse motility . I’m starving but can’t digest anything as motility is at a stand still

Thank you

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

HelloSorry to bother you

my tsh of 1.6 - isn’t that insanely low. I mean hypo?

Please explain to me

As I need to

Get emergency appointment with endo

In the meantime need to adjust

Why has it all

Gone crazy hypo?

greygoose profile image
greygoose in reply to Chouchou1234

my tsh of 1.6 - isn’t that insanely low. I mean hypo?

It's too high for someone on thyroid hormone replacement - especially someone on T3. But, TSH isn't the most important number. The FT3 is the most important. TSH isn't a very reliable indicator of thyroid status.

As I need to

Get emergency appointment with endo

In the meantime need to adjust

You need to stop adjusting!!! Stop messing with your dose.

Why has it all

Gone crazy hypo?

I don't know because you will not give me that time-line I keep asking for, telling me exactly what you've done when, and why. I am totally lost in this confusing thread which jumps around all over the place and does not follow any logical order. I can't find any of the basic facts anymore. And, you don't answer questions. I'm totally confused.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi ! I’m so embarrassed with my panic .

Ok thank you - sorry for the manic emails I’ve been terrified the past few days as a and e not helping me .

So I’m meant to be on

From 2nd July

T4 - 75mcg

T3 - 5mcg x 2 a day

(But I must admit I was taking 50 mcg a and some days 75 as thought my T4 was pushing T3 down and I feel terrible tired and weak on t4 )

I was on previously 1 month ago before

100mcg of t4 only

Previous result were approx 7 weeks ago

T3 2.1 (4 -6.8)

T4 20 (11- 22)

TSH 0.02

But last September October my T3 was 3.5 and t4 went up to 23

I’m embarrassed to say

In desperation I took 250 yesterday t4 total 🥴🥴🥴

Today -

50 t4 this morning at 7am

50 t4 at 2pm as was sleeping exhausted

It was On was empty stomach and no food or drink and went straight back to sleep .

T4 makes me super tired and bedbound

Results Friday

T3 2.8 ( 4 to 6.8) was 2.1 a month ago

T4 dropped to 11! (12 to 22) last time was 20 a month ago

TSH 1.5 was 0.02 a month ago

(This was over phone with 111doc) I can get results on paper my history tomorrow

I did my blood test at 12pm - last t3 dose 7pm night before - I had to go to hospital and they were delaying the tests for hours

25mcg t4 before blood test

It’s not in my head and it’s not the heat plus zero zero peristalsis with 30 dulcolax and magnesium abs still no motility!.

I do suffer from body dysmorphia so that has triggered me so I measure myself and you can see it on the scales

Could t4 be pushing T3 down so now im taking T3 my body is like what the hell more hormones !

Swelling up and pushed my t4 down -??? If it wears of does it push my t4 down so when t3 wears off I’m much worse ?

Note:

I have diagnosed ‘severe neuroenteric disorder’ basically stomach doesn’t work at all properly but no one tested my T3 until last year 2.1

I have SIBO - small bowel bacteria overgrowth- so took antibiotics last night too and today have insane allergic reaction or my liver is saying what the hell !

Can I take anti histamine wirh T3 ? I have huge allergy today all over itchy

I’m

being told the only solution is a feeding tube is terrifying Which is insane .

They just didn’t bother looking into my thyroid !! I was begging them in hospital . It’s fighting a system

Please explain why T3 has pushed my t4 down - so explains zero peristalsis I mean mine is horrendous to start with and I have pockets of paralysed bowel .

I’m about to take t3 but I’m so exhausted worried about everything

I’m alone and petrified

Hospital won’t help

Gp on phone saw results and said ‘go to hospital’ your results are ‘nearly in range’

greygoose profile image
greygoose in reply to Chouchou1234

(But I must admit I was taking 50 mcg a and some days 75 as thought my T4 was pushing T3 down and I feel terrible tired and weak on t4 )

Yes, well, you now know that doesn't happen, don't you?

In desperation I took 250 yesterday t4 total

OK? So, for the next two days, I wouldn't take any, if I were you. It won't do you any harm, but every time you change your dose, that adds on another six weeks before you can test.

So, if I were you, I would take nothing Monday, Tuesday. On Wednesday, go back to 75 mcg levo and 3x5 mcg T3, like you're supposed to take. AND STAY ON IT FOR SIX WEEKS BEFORE TESTING! No more changes. There have been far too many lately, and that is counter-productive. You'll only make yourself feel worse.

T3 2.8 ( 4 to 6.8) was 2.1 a month ago

Was that on 15 mcg T3?

I did my blood test at 12pm - last t3 dose 7pm night before - I had to go to hospital and they were delaying the tests for hours

OK, well that test is null and void, then, because the blood was taken too late in the day - the TSH would have been at its lowest, and the FT3 is a false low because the gap was 17 hours and shouldn't be more than 12.

Could t4 be pushing T3 down so now im taking T3 my body is like what the hell more hormones !

No! Absolutely not. That's not how it works.

Swelling up and pushed my t4 down -??? If it wears of does it push my t4 down so when t3 wears off I’m much worse ?

T3 DOES NOT WEAR OFF. It stays in the blood for about 24 hours, then you take another dose, and what gets into the cells stays there for about 3 days, and is constantly being topped up. No way it can 'wear off'. It's not aspirin, it's a hormone.

I have diagnosed ‘severe neuroenteric disorder’ basically stomach doesn’t work at all properly but no one tested my T3 until last year 2.1

Well, such a low FT3 would cause low stomach acid, which would mean your stomach didn't work. Did anybody test your stomach acid level?

Can I take anti histamine wirh T3 ? I have huge allergy today all over itchy

As long as you take it two hours away from thyroid hormone, yes.

Please explain why T3 has pushed my t4 down - so explains zero peristalsis I mean mine is horrendous to start with and I have pockets of paralysed bowel .

Nobody knows why. It just does. There was a long discussion on that subject on here, sometime last year, and nobody could come up with an explanation. We just know it always does.

But, T4 - as far as I know - has nothing to do with peristalsis. It's a storage hormone that doesn't do much until it is converted into T3. And, as far as I can see, you're a poor converter, anyway. So, your lack of peristalsis is more likely to be to do with your low FT3.

Gp on phone saw results and said ‘go to hospital’ your results are ‘nearly in range’

Your GP is an idiot. lol Nearly in range! Does he actuall think that is a good thing? Like most GPs, he hasn't a clue.

Yes, I'm afraid you are on your own with this - like most of us. Which is why you need to learn as much as you can about how the thyroid works, and what the thyroid hormone replacement does. You could start by reading on the TUK site itself:

thyroiduk.org/

:)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi

I have been on T3 x 2 a day

X

Today ofcourse my stomach is brilliant peristalsis and movement ! No problems!

Thank goodness .

Could that be the high dose of t4 ???

Re stomach acid - no test.

Shall I get HCL supplement and try

It’s my small bowel and large bowel doesn’t work!

I do get a twinge of movement after T3 a

Teeeny teeny tickle so I’m

Hoping if T3 goes up! 😀 what a game changer !

Thank you again

I don’t have swelling bad today ! Fingers crossed. Things are moving . Would t4 have an effect that quickly ? I’ve basically taken 300 within the last 24 hours and different person today . No swelling .

Thank you 🙏

Xxxxxxx

greygoose profile image
greygoose in reply to Chouchou1234

Could that be the high dose of t4 ???

Not unless a lot of it is converting to T3. T3 is the active hormone.

Shall I get HCL supplement and try

Good.

It’s my small bowel and large bowel doesn’t work!

Well, they won't work if your stomach doesn't work.

Would t4 have an effect that quickly ?

No, it really wouldn't.

:)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you so much

greygoose profile image
greygoose in reply to Chouchou1234

You're welcome. :)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you 🙏 I’m so embarrassed about bothering you.

Does the last bloods show I’m

Severely hypo?

Why has this happened that t4 dropped so much ? Wednesday I went for colonic and couldn’t even do it as zero peristalsis.

I took my 5mcg just now and panicking

I read and research that bile etc is severely hindered with hypo . I don’t have gallstones.

greygoose profile image
greygoose in reply to Chouchou1234

Your latest bloods don't show anything at all because they weren't done correctly.

You need to have the blood draw early morning - before 9 am - fast over-night.

Leave a 24 hour gap between your last dose of levo and the blood draw.

Leave a gap of 8 to 12 hours between the last dose of T3 and the blood draw.

Do this in six weeks time, for your next bloods, and then we'll have something to talk about.

In the meantime, you need to work on your stomach acid. Have a look at this article and try the home test for stomach acid levels:

healthygut.com/3-tests-for-...

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you Ideal timing to take T3 ? Spacing and before bed I find I can’t sleep

greygoose profile image
greygoose in reply to Chouchou1234

That's something you have to find through trial and error, because everyone's different. As long as you take them on an empty stomach, two hours after food or one hour before food, it doesn't really matter. It's what's best for you. :)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you for your patience and kindness and replying. I’m doing lots of research with the links .I have a question I have the 5mcg capsule and opened them and took them under the tongue to absorb quickly . Is this not correct?

greygoose profile image
greygoose in reply to Chouchou1234

T3 capsules? No, that's not the right way. You need to swallow them. T3 molecules are too large to pass through the mucus membrane into the blood. So, it would just hang around in your mouth and maybe bind with remains of nutrients in your mouth.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi Could the high dose of thyroxine cause severe allergy.

Yesterday and today it’s really bad . Body is on fire .

The only thing it could be I had 2 toasts first time in years with gluten 2 nights ago . The same night I took the night dose 250 .

I’m thinking it’s my liver is screwed up . Severe constipation again

I can’t cope It’s so badly I want to rip my skin off .

Any advice ? I have taken antihistamine but they give insane anxiety .

I took my T3 dose 2 hours ago and I’m freeeeezing like shivering I’m so cold . My hands are ice blocks . Could my thyroid be shutting down.

Thank you 🙏 I’m panicking

greygoose profile image
greygoose in reply to Chouchou1234

Could the high dose of thyroxine cause severe allergy.

Not that I know of. Being hypo can cause allergies.

But, more likely to be the gluten!

Could my thyroid be shutting down.

I should imagine your thyroid shut down ages ago. Taking any thyroid hormone replacement does that, and you've been taking it for some time. But, it doesn't matter because you're taking thyroid hormone replacement! That's what it's for.

Stop panicking, you'll only make things worse.

I think part of the problem is you expect everything to work instantly, and it rarely does. Took me several years to resolve my constipation taking magnesium and vit C every night. And it still comes back if I miss a night! We have to have patience.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

I have hydrated and had lemon water with bit of salt Fresh pressed greens smoothie

Strong black coffee

Nothing

Had a grated cucumber and apple to try help nothing

I’m debating do I go to hospital it’s so bad I was there yesterday and ofcourse my

Stomach was working yesterday

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi

I need to buy Vitamins etc and researching is the sublingual better ? The Thorne b ? I’m

A bit overwhelmed As not feeling well at all.

I took the second dose of T3 and swelling up again .

Thank you

greygoose profile image
greygoose in reply to Chouchou1234

Sublingual is better for B12, yes. Are you going to take B12 + B complex? Or just B complex?

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Should I take both? X I’m confused

greygoose profile image
greygoose in reply to Chouchou1234

Depends on your B12 level. If it's very low, it might be a good idea to take both. If it's not too low - say 400 and up? - then just taking a B complex should be enough.

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Fantastic thank you 🙏

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Thank you so much so sorry to bother you . The gp refused to do tests x

greygoose profile image
greygoose in reply to Chouchou1234

When did he last do them?

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

3 months ago x

greygoose profile image
greygoose in reply to Chouchou1234

OK, but you haven't been on a steady dose since then, have you? You've been chopping and changing. So, no point in doing labs, anyway. :)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi ! The saga continues - Today I have severe pain in the upper right quadrant again zero motility and blown up.

1 took T3 at 9am felt great and around 3 pm crashed fell asleep and woke up I couldn’t even lift my arms or head. Is that as it’s wears off? Took T3 and zipped up and been non stop.

My body is severely bloated and zero motility . Not hungry at all. Which doesn’t bother me but taking T3 would mymcortisol be off the charts as I’m energy but haven’t eaten all day . My body is severely bloated and so uncomfortable

I was reading the gallbladder connection metabolic syndrome? I don’t have gallstones.

Also 2018 I was in hospital severe impactation of bowels and my T4 reading was 9 (12 to 22) and tSH 5.3 !

That is severely hypo right? No wonder I was having problems and started self medication. I’m petrified as no one is helping me . I spoke to gp last night they said speak to endo . Can’t get appointment for a month . Not sure do I go back to 100mcg thyroxine and 5mcg T3 . .

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Hi it’s me againI found blood tests from Jan 2021

Iron -

Iron binding capacity 73.6 (20 -66)

Serum TIBC 85 (41 -77)

Saturation 13% (15 to 50)

They just marked them

As normal ?!

What does this mean?

Do I ask for new test?

My ferritin was 25

Thabknyoun

greygoose profile image
greygoose in reply to Chouchou1234

That's an iron panel, and I know nothing about them. I would suggest you start a new thread to ask that question, so that those that know can answer. :)

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

I’m in tears 2 kilos in 5 hours ! How is that possible

greygoose profile image
greygoose in reply to Chouchou1234

It's water retention. Stop weighing yourself!

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

Could it be that T3 is doing something to my gallbladder . I take it abs severe spasm pain on right where gallbladder is . Then complete stop zero peristalsis. Feels like s like something is going to explode . I read metabolic dysfunction leads to gallbladder dysfunction

greygoose profile image
greygoose in reply to Chouchou1234

No, the T3 is not doing anything to your gallbladder. T3 is the good guy, here, not the enemy! Have you had a scan of your gall bladder?

Chouchou1234 profile image
Chouchou1234 in reply to greygoose

We love a good guy! Finally something positive. Sorry to be such a nightmare I am just trying so hard . Yes gallbladder scan and Hida no stones . But I read low thyroid effects bile flow.

Thank you 🙏 have a great day

Swelling is super bad today . I give up

greygoose profile image
greygoose in reply to Chouchou1234

Low thyroid hormone levels affect bile flow. Not taking T3 tables. :)

Drink cranberry juice, eat onions and garlic and ginger, drink lots of water. :)

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Important to test vitamin D, folate, ferritin and B12 too

When were vitamin levels last tested

What vitamin supplements are you currently taking

Do you have autoimmune thyroid disease, also called Hashimoto’s, usually diagnosed by high thyroid antibodies

As greygoose says…..please add most recent thyroid and vitamin results and ranges

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Thank you . I will get results again T3 2.1

T4 20

TSH 0.05

Thyroxine previously 100

Now thyroxine 75 mcg

T3 5mcg - morning night

Ferritin 35

Vitamin D 55 (will start vit d and k2)

Vit b12 476 (on co strong vit b )

Forceval vitamin

I had selenium and zinc test all good. Zinc was boarderline high

Iodine not tested

Severe constipation- to point of prolapse

Bed bound pretty much last few years .

My t4 was coming back normal but testing T3 it’s super low. 2.1 for past year .

Feel so much better on T3 but swelling on legs and abdomen

I have severe ‘neuroenteric’ disorder - my bowels don’t work - I’m hoping if I raise the T3 it will start working .

Thank you

I’ve been battling for years and no one was taking me seriously.

Finally !

Thank you

So I need to take v

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

T3 2.1

T4 20

TSH 0.05

Ferritin 35

Vitamin D 55 (will start vit d and k2)

Vit b12 476 (on co strong vit b )

Please add ranges on Ft4 and Ft3

Ferritin is far too low

Has GP done full iron panel test for anaemia?

Are you pre or post menopause

Vegetarian or vegan?

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Medichecks iron panel test

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Are these multivitamins prescribed by GP?

Multivitamins are never recommended on here

On levothyroxine we don’t need iodine

Forceval ingredients

medicines.org.uk/emc/produc...

Tiny amount of vitamin D

Folic acid instead of folate

Iodine…not recommended

No folate result

B12 still too low

Suggest you consider dropping multivitamins and taking separate vitamin supplements instead

A GOOD quality vitamin B complex and separate B12

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) . This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B or recommended option that contains folate, but are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

Low B12 symptoms

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been

healthunlocked.com/thyroidu...

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Tested Hashimotos’s and negativeAnd antibodies low

But

Last week my CRP first time ever

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Have you had BOTH TPO and TG thyroid antibodies tested

NHS refuses to test TG antibodies if TPO antibodies are negative

Significant minority of Hashimoto’s patients only have high TG antibodies

Have you had ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

SlowDragon profile image
SlowDragonAdministrator

Vitamin D needs improving to at least around 80nmol minimum

How much vitamin D are you currently taking

Test twice year when supplementing

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

Magnesium citrate very good for constipation too

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

OP, I've just read this thread and your desperation to be well is plain to see. It's rather confusing though.

How much T4 do you take a day?

How much T3 do you take a day?

When did you last change your dose?

If you can answer those questions members can advise you better but we need a clear idea of what you're taking and when. X

Chouchou1234 profile image
Chouchou1234 in reply to

Thank you 🙏

Chouchou1234 profile image
Chouchou1234

Hi

I asked for print outs

Looking back at history - I have struggled for years with constipation and stomach issues and 2018 I basically was on such a high dose of laxatives and stomach impactation

I just saw results today and I remember begging the doctors for help as nothing was working and they didn’t put me on anything

How is this possible?? Severely hypo! I didn’t realise - but I was in hospital 3 times with bowel impacted - no one thought to start my o. Thyroxine

2018

Tsh 5.39 (0.27 to 4.2)

T4 9.3 (12-22)

Doctors did nothing to put me on thyroxine - so I started self medicating as I saw a doctor in Belgrade who put me on it and I started going to the toilet! Back 2012

So that’s why I’m so anxious.

My stomach today is worst again!!

I got the results from Friday

On 50mcg and 75 mcg t4 and 2 x 5mcg T3

TSH 0.11 (0.27 - 4.20)

T4 11 (12-22)

T3 2.6

Also going back to 2014 my T3 was 2.2

My legs completely numb but I think it’s electrolytes issue . They have blown up again

What is the best regime for increasing. Slow and steady what does that mean .

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Increase levothyroxine to 75mcg every day

Retest again in 6-8 weeks

Likely to need further increase in levothyroxine after next test

Or increase dose T3 by 5mcg after next test

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

Teva brand levothyroxine is only brand that makes 75mcg tablets

Teva brand upsets many people

Meanwhile working on improving low vitamin levels

Vitamin D everyday.

How much vitamin D are you taking

Suggest Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Try at least 3 sprays per day minimum

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Retest in 2-4 months

Magnesium supplement every day (at least 4 hours away from levothyroxine)

Vitamin B complex everyday after breakfast

Iron rich foods to increase low ferritin

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Hi thank you

I have taken 100 the past 2 days plus 5x3 a day . Is that way too much

I’m swelling like crazy .

I’ve been itching loads too thinking my liver is not happy . No rash .

But my stomach is definitely working today

Legs super swollen water Retention but I think electrolytes imbalance.

Teva as lactose free . I can’t do lactose as Sibo very bad .

Vitamin D - I’m ordering the one you mentioned the green one on Amazon ? Better u has some sugar alcohol ?

Endo has not come back to me and gp useless .

Is this very catabolic or my dose is so small ?

I have huge amounts of fat accumulated on my legs . When I take it is such energy and I can’t eat but putting on weight . When I crash around now I just lied down I actually feel like I’m in a coma . Typing is too much . Lifting my head is too much . Am I not putting so much stress on my body ? It’s not normal to be this exhausted.

Thank you

I’m petrified as navigating this myself

Can I ask back in 2018 when I was in hospital severe impactation/ constipation for years I only found out 2 days ago as reviewing records my TSH was 5.7 - max is 4 and t4 was 9 . (12 to 22)

I’ve been completely left to my own devices

Thank you 🙏

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Ok so stay on 100mcg every day …..or possibly 100mcg 4 days week and 75mcg 3 days a week

Is your T3 lactose free?

Which brand is it?

Teva is lactose free, but contains mannitol too. Mannitol upsets some people

Other lactose free brands without mannitol

Glenmark, new brand, may not easily be available

Aristo - 100mcg only

Can cut to get different doses.

Important to get all vitamins to GOOD Levels

Red one - Better You vitamin D is best.

Contains vitamin K2 as well

amazon.co.uk/BetterYou-Dlux...

One spray = 1000iu

Suggest you try 3 x spray per day

Look at eating iron rich foods in diet to improve low ferritin

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Hypothyroidism can be linked to lipodema

lipoedema.co.uk

Getting thyroid levels improved to GOOD levels will help

Only increase levothyroxine slowly

Wait 6-8 weeks after any dose change or brand change in levothyroxine before retesting levels

ALWAYS test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Last 5mcg dose T3 approx 8-12 hours before test

Chouchou1234 profile image
Chouchou1234

Thank you ! I know my ferritin is 25 ? That’s good for me and it was never mentioned by doctors .

What I find weird if I don’t take thyroxine and T3 I’m much less bloated and no where as near water retention.

I’m worried I’m over dosing causing too much stress on my body .

Thank you again

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Ferritin is far too low

Are you pre or post menopause

Vegetarian or vegan

Low ferritin extremely common when hypothyroid

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Also See page 7 on here

rcn.org.uk/-/media/royal-co...

Request full iron panel test for anaemia from GP

Meanwhile

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Medichecks iron panel test

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Good explanations of iron

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Excellent reply by Blearyeyed about iron in this post

healthunlocked.com/thyroidu...

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Hi it’s me againI found blood tests from Jan 2021

Iron -

Iron binding capacity 73.6 (20 -66)

Serum TIBC 85 (41 -77)

Saturation 13% (15 to 50)

They just marked them

As normal ?!

What does this mean?

I love meat 🥩 and liver .

So no problems there. Just due to digestion issues I eat a lot of fish as find it easier.

I will eat more. I am craving meat and ‘bones’ so my body must need it.

I can’t take iron supplements because of constipation.

Thank you .

I have noticed fat accumulate on mum legs the past 3 months.

Question - I get such a huge boost when I take T3 it’s like an immediate charge!

I was going to take 3rd 5mcg tonight - as my

Second dose wearing off and suddenly the heaviness in my body is so massive. Lifting my

Head is too much . Am I not stressing my body?

Is there a possibility i

Made my t3 reduce from over medicating on t4 years ago?

2018 my t4 was 9 and tsh 5.4

Severely hypo?

Xx

Thank you 🙏

What happens

When I

Get iron up?

T3 gets higher?

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

High TIBC - indicates iron deficiency

webmd.com/a-to-z-guides/wha...

Low saturation- indicates iron deficiency

medicalnewstoday.com/articl...

Not all iron supplements cause constipation

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

What I find weird if I don’t take thyroxine and T3 I’m much less bloated and no where as near water retention.

At the moment your under medicated.

It’s important to increase dose levothyroxine up SLOWLY and at constant steady dose. Not chopping and changing dose up and down.

Levothyroxine doesn’t “top up” failing thyroid, it replaces it. As dose levothyroxine increases steadily, your metabolism will improve and bloating will reduce.

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Question I’m

Starting to crash and it’s so severe !

It’s also depression this yo yo is very extreme!!

Do I take another 5 before sleep?

Also

My endo said that T3 benefits wear off after few

Months

I told him it was a game changer and he said that alot of people say it wears off ina few months. I’m so worried they stop it but it’s such a huge difference .

Mentally my

Mood and attitude is my old self

X

Weird I was at the end .. before I started test after test in bed 23 hours a day sleeping and watching tv shows . Bending down to pick up a sock or have a shower was so painsful . Freeeezi mg all the time . Literally in thermals before I started and sitting in bed in my

Coat

Xx

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Don’t keep changing dose

Stick on 3 x 5mcg T3 and same dose levothyroxine every day and retest in 6-8 weeks

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

I’m having zero motility worried that myThyroid stopped.

Could I be over medicated with thyroxine and T3 just shutting down as another 2 kilos. It can’t be possible .

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Every time you change dose of levothyroxine or T3 you need to wait at least 6-8 weeks for rest of your endocrine system to catch up

The more you chop and change dose the longer it takes to settle

Taking almost any dose of T3 will almost always reduce TSH extremely low, or suppressed. That’s why it’s best to get on highest dose levothyroxine you need/can tolerate…..before adding T3

All four vitamins need to be optimal for levothyroxine or T3 to work well

Obviously your low iron levels aren’t helping

You need to find an iron supplement you can tolerate

Alternatively an iron transfusion

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Hi so what does that mean . If my TSH before was 0.05 and then taking T3 am I not suppressing my T3 more so effectively I’m putting on weight. I’ve put on 4 kilos and eaten less and exercised moved 10 times more. Before I was in bed all day night could just about walk to shops 5 mins walk. Now I’m walking 1 to hours a day . My legs have got fatter.

My tSH before on 100mcg was 0.05 and t4 19 and T3 2.1

With T3 - 5 x2 a day it only went up 2.8 but t4 dropped to 11 and tsh 0.11

I spoke to gp today who was totaly useless and talking about tsh he had no clue. The. Starts telling me I don’t need t3 rubbish so cut him off and awaiting endocrinologist . I wrote to him.

How can I explain it- it’s a vascular thing then I’m bloated my whole body it’s like I can’t breathe and walk properly .

Could this be cortisol ? Something is going on why I’m blowing up with medication.

It’s so uncomfortable .

With the new reading last Friday

T4 of 11 and T3 2.6 aren’t I severely hypo????

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Reading through this (extremely) long thread…..you have changed dose levothyroxine and T3 so many times ….your body is totally confused

Stay on same dose and brand of levothyroxine

Be patient

Pace yourself, and wait while levels settle

Meanwhile……Work on improving low vitamin levels

No point doing any thyroid test until been on same unchanging dose and brand levothyroxine and T3 for a minimum of 6 weeks……ideally waiting 8 weeks to retest

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

I’m getting vitamin b12 injection as feel tottaly run down

Chouchou1234 profile image
Chouchou1234

But why am i putting on weight getting bloated .am I not meant to loose weight on this

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

If increased dose too quickly (or chopping and changing dose) this can cause bloating etc

Nether levothyroxine or T3 are “weight loss” hormones

All four vitamins need to be optimal for levothyroxine or T3 to work well

Iron/ferritin is obviously terrible

Excellent reply by Blearyeyed about iron in this post

healthunlocked.com/thyroidu...

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Can’t be possible so quickly weight gain I was reading another person thread and she was hyper and had exactly same T3 !

2.1 -and tsh 0.05 could my T3 dropped from too much t4 ? Even if my t4 is 19?

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

To convert levothyroxine (Ft4) into Ft3 in your cells you need GOOD vitamin levels

Optimal vitamin levels are

Vitamin D at least over 80nmol

Serum B12 at least over 500

Folate and ferritin at least half way through range

It’s not just a case of swallowing thyroid hormones

We have to be able to convert and use them

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

I’m ordering vitaminb12 ampule injection. Also B1 thiamin does that help?

I have it on prescription -

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Most hypothyroid patients need to supplement vitamin D, magnesium, vitamin B complex

Some need separate B12 as well

Test FIRST before starting any supplements

Obviously you need to get iron and ferritin levels significantly improved

Trying different iron supplements and increasing iron rich foods in diet

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Hi Swelling is beyond tonight

Im hungry but can’t digest

Can you tell me you speak to so many people helping them . Isn’t 2.1 so low that it is flat lining ? I can’t see anyone else with 2.1 and if you do is no stomach motility a sign of low T3 ?

I am asking if that is definitely a sign .

My gastro and endo have not said it will def work but it makes sense . Do you k is other people very low T3 with no peristalsis etc so gives me hope .

Thank you

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

I have definitely got itchy when taking it and definitely got fat accumulating on my legs . I’ve measured it . How is it possible I’m getting fatter but taking more T3 ?

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Is T3 processed through the liver ? I’m very swollen and painful in the liver area upper right quadrant under rib .

I’m taking high dose of NAC and milk thistle for my liver .

They used to be very raised

It’s been happening and I’m very worried . That’s maybe why I’m swelling up.

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Some conversion happens in the liver, most in cells direct. Some in the gut

drbradshook.com/understandi...

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

I just took my 3rd dose and I swell up so uncomfortable I can’t breathe my legs hurt . Something is wrong Before I took it I couldn’t stand up . Now is the medication making my natural T3 suppress more so when it wears off I’m in a worse state and more hypo

I’m in tears I can’t handle this 2 weeks up 6 kilos

Chouchou1234 profile image
Chouchou1234

I have read so many people have weight gain on T3 and something to do with cortisol.

I had mine checked 4 years ago for addisons and it was fine. As I was loosing too much sodium . But that’s all stable

My b12 is 497 - if I get injections and take 1 every 2 weeks amd test in 2

Weeks?

I’ve also re started thiamine this week.

Vitamin d with k2 - start

It was 88 last November but I stopped taking g them

Now 55

Can you confirm that if my

T3’goes up I will be able to digest food so able to eat more than 1

Meal as peristalsis is zero .

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3 and under stand it

tukadmin@thyroiduk.org

Ideally you wouldn’t have added T3 until all four vitamins are tested and at OPTIMAL levels

Vitamin D at least over 80nmol

Folate and Ferritin at least half way through range

serum b12 at least over 500

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

I’m not sure if I should go to a and e I took my T3 and swelling up and I have fat accumulated on my legs . It’s piling on daily .

It must be a reaction to T3 it’s gone into severe storing fat . Makes no sense .

I can’t cope there must be a reason

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Then slowly reduce and stop T3 ….over 2-3 weeks. Reduce by 5mcg per day….wait a week or so ….then reduce again etc

go back to just levothyroxine

Try splitting your levothyroxine….half waking and half at bedtime

Work on improving low vitamin levels especially ferritin

Strictly gluten free diet and/or dairy free frequently necessary

Consider seeing specialist for possible Lipodema diagnosis

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Hi could my thyroid have shut down . I took sexond dose 2 hours ago and I’m freezing cold . I thought it would be maximum effect 2 hours . I took 5 at 7am and 5 at 12 pm and have been walking for 2 hours . Zero motility. My hands are frozen

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

As Greygoose said ….earlier in this ridiculously long post

Take 75 mcg levo and 3x5 mcg T3, like you're supposed to take. AND STAY ON IT FOR SIX WEEKS BEFORE TESTING! No more changes. There have been far too many lately, and that is counter-productive. You'll only make yourself feel worse.

What vitamin supplements are you currently taking

Stop milk thistle and stop multivitamins

Just take

vitamin D with k2. (Eg Better You mouth spray)

Vitamin B complex (eg Thorne Basic B)

And eat as much iron rich foods eg liver pate, red meat, black pudding etc with orange juice as possible

Magnesium supplement to help improve constipation

(Eg Thorne magnesium capsules)

See GP for something to calm you down and reduce anxiety next week ……Possibly even propranolol. It slows conversion and uptake of Ft4 to Ft3 …..but can be extremely effective at helping you get use to the correct dose levothyroxine and T3/

You might find my profile info helpful.

I was on propranolol almost 20 years…..but could never have tolerated increasing levothyroxine dose without it

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Sorry to bother you . I took another T3 now . Thinking it will help my bowels move . That’s 2 hours after my 3rd dose one is that too soon ? . Will I be Ill I’m panicking now . Not cold anymore stomach definitely not workingThank you again sorry 😞

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

Don’t do that again. It’s all the changes that are making you so unwell

It takes 6 weeks for your body to adjust to any dose change

From tomorrow

T3

take 5mcg waking, 5mcg mcg mid afternoon and 5mcg at bedtime

Or if taking T3 at bedtime keeps you awake

Take 5mcg waking, 5mcg around noon and 5mcg at 6pm

Always on empty stomach and then nothing apart from water for at least 40minutes

Levothyroxine

Take whole dose waking or bedtime

Or split half waking and half at bedtime

Always on empty stomach and then nothing apart from water for at least an hour after

No supplements or other medications within 2 hours minimum

Take EXACTLY same dose every day for 6 weeks before retesting

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Hi

I have blown up even more.

I notice I took 25mcg of t4 now as only took 50mcg this morning and

1. Makes me super tired and achey heavy (over medication?)

2. Legs are so heavy and bloated and hurt

3. Exhausted

Here are my thoughts

1 I was seriously over medicating myself about 3 years ago -300 t4 a day ( I never tested myself while on it )

Could this have pushed my T3 down ?

They won’t test my reverse T3 but on 100mcg t4 I’m super tired .

I read that too high t4 it goes to reverse t3 and that can make you gain weight etc and lowers t3

Also read it coverts T3 to T2 . The D2 enzyme

SlowDragon profile image
SlowDragonAdministrator in reply to Chouchou1234

You won’t make any progress until you take the same dose levothyroxine and same dose T3 EVERY DAY for a minimum of 6-8 weeks and retest

Come back with new post after 6-8 weeks on constant unchanging dose levothyroxine and T3

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

I just got a message from my endo to pick up prescription for 6 months and he will see me then ! I think they want to trial me on it but nothing about navigating higher doses testing etc . He’s on annual leave . The message was try for 6 months if better take it otherwise stop .

Question

Feels like difficulty swallowing . Is that thyroid ?

Next - does T3 slow bile flow ?

Thank you

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

Hi sorry to bother you . I’m so exhausted I haven’t slept well in 4 nights - 2 hours a day . Now it’s time to take my next dose . But I I try sleep and take it later will it mess up or better to take now. I’m shaking so tired . Bur when I take T3 it gives me energy Ao I’m worried I’m basically pushing myself so much .

tattybogle profile image
tattybogle in reply to Chouchou1234

Hi Chouchou1234. You have made so many changes recently that you need to understand it will take a long time for things to settle down again once on a stable dose ( weeks not days) . During this time all sorts of things (including your sleep) will be all over the place ... you need to accept this is how it will be and wait patiently for several weeks on a stable daily dose until some stability returns.

Before anyone else answers, please can you clarify something for everyone, as there is a heck of a lot of confusion in this post.

What dose of T3 did the endo prescribe for you to be taking ... in some replies you said it was 75mcg Levo and 2 x 5mcg T3 ... but somewhere over the course of this post it seems some people now think you are supposed to be taking 75mcg Levo and 3 x 5mcg T3

Can you clarify what your total daily prescribed dose of T3 was supposed to be please ? 10mcg or 15mcg ?

also . just to clarify incase you hadn't understood ~ the latest set of thyroid blood results you had done cannot be used as a guide for anything if you were changing the doses you took in the days/ weeks leading up to having those bloods taken . Thyroid Blood test are only any use if you were taking the same dose every day for 6 weeks before the test ... if not the results will be totally unreliable.

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

I’m on 75mcg a day t4 and was on 2 x5mcg now I have changed it to 3 x 5mcg T3 The water retention on stomach is so much better . I increased to 15 not doctors.

Legs puffy .peeing a lot more !!!

Digestion insanely bad.

I notice when it wears off After 8 hours - I can’t even stand up lift my arm

Sorry I’m bothering everyone . I’m

Petrified as I’ve been abandoned by the medical team in 2017.

I’m

Worried as the message from

My endocrinologist secretary yesterday was - here is medication for 6’months and if it doesn’t help then stop. No guides on increasing or managing or testing . He’s now gone on holiday and my gp refuse to help.

I asked her what the dose was and she couldn’t tell me. I have to collect from hospital

I have increased it to 15 mcg not been told to.

I feel better on it 15mcg spread out but the ‘crash’ is horrific 9on so many levels - physical and mental . If I’m 2.1 ! I mean come o. Guys I have not seen 1 post with levels that low and combined with t4 of 11 ??

It was taken 14 hours after last dose of T3 so 2.8 is still shocking low.

If you were - t4 11 and T3 2.8 on 10mcg 14 hours previously - wouldn’t you be freaking out ? I mean I have not left my bed unless I take T3. Can’t even shower . Can you not see the desperation and panic? I have severe severe gastro issues so navigating this while trying to eat is 🤯.

You all seem to have managed some resemblance of a life. I have been

In bed 6 years . 20 minute walk to shop if I can for food . That is it. The. T3 started it was hello world!

tattybogle profile image
tattybogle in reply to Chouchou1234

I don't think anyone has any idea what your T3 , (or T4) level is now , either on the 10mcg T3 that you were prescribed or on the 15mcg T3 that you increased it to .So you need to stop thinking it's 2.1 or 2.8 or whatever ..... you won't know what it is on T3 medication until you've taken a consistent dose for 6 weeks and then tested the levels.

I do understand the very tough time you're having , lots of people on here know what it is have been bedridden for years with other complications and below range T3 before gradually figuring out how to improve things ..,, but we also know (from learning the hard way), that constantly changing doses every few days /weeks makes bodies very unwell indeed and takes many weeks to recover from... so you need to take that on board and set about finding the right dose for you very slowly, carefully ,and methodically ..

Learning from the lived experience of people on here about how and when to test /increase dose or not etc is probably going to be more help to you than instructions from the endo anyway ,endo's are useful for prescribing , but the subtle skill of fine tuning a dose to feel better is not something most endo's are very well trained in .

There is plenty of experience and support here ... so don't feel lost because the endo's on leave , you're not alone and people here know the way.

Yes, i can hear the desperation and panic , we all can , and lots of us have been there too , but Hang in there ... keep your dose consistent and let the dust settle , and then follow the advice on testing from experienced members .

tattybogle profile image
tattybogle in reply to tattybogle

Chouchou ...i wrote a reply to a request for help you made a few minutes ago that has since disappeared

"Please help ,I am at the end ! Nervous breakdown to day,Hear me out, I used to take a ridiculous amount t4 years ago to help speed up so I could go to toilet . 300 a day period 6 months.,Could this lowered My T3.Now taking T3 I’m blowing up. Literally put on 4 kilos but the water retention is beyond . My face is puffy and legs have Swelled from 10 inch calf to 13.5 inch. It’s not the heat . It’s me .Also I noticed for 3 weeks now my glands are swollen in. Neck and arms. Feels like I have the flu but I don’t . Could this be Thyroiditis shutting my tiny bit of T3 down . If it was only 2.1 to start with with T3 introduction grey groose said it suppresses my natural thyroid so my body as survival is turning everything into fat and water. I’m eating super healthy as always and nothing . Exercising more. Mentally this is too much for me. The legs are massive bloated . What if I take More t4? If t4 is the storage hormone and not converting what Does it do anyway?Thanks"

Chouchou1234 profile imageChouchou1234 in reply to tattybogle 50 minutes ago

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Am I over medicated now my legs are so heavy . My glands under my arms are massive and throat I can’t do this it’s too much . Why was my T3 3.5 in November and t4 23 - does it mean more t4 but I don’t remember taking more than 100 I was on less before . Could it be less t4 made it higher and now it’s just going into reverse T3 So technically on lower dose but my T3 was higher and t4? Or that doesn’t make sense. I read that once you over medicate it goes to reverse T3"

Chouchou1234 profile imageChouchou1234 in reply to tattybogle 24 minutes ago

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I don't know if you intended to delete your questions or not but i've posted my reply anyway as i'd already spent the time writing it :

Hi again chouchou...there are 3 issues that i think need addressing here

1 ... you are concerned about swelling up of your legs and enlarged lymph glands etc .. , that sound pretty extreme and no one here can tell you if it is a problem or not ... you need to go and get examined by a Doctor who can see your legs and feel your lymph glands in your neck and then discuss if there is anything to be concerned about.

2..... you are confusing yourself with half understood theories and information about what your thyroid is doing and "is it shut down" etc etc .. most of what you are thinking and worrying about is incorrect because you haven't understood correctly how it works and that is not surprising because its fiendishly complicated and you are not feeling calm or well enough to study and understand it right now ..... so for the time being you need to stop overthinking what you are doing with your thyroid medication .and how your thyroid works .. you'll just drive yourself nut's and tie yourself and everyone else in knots . ..... you are taking some T4 and some T3 .... so you ARE getting some of both T3 and T4, regardless of what your own thyroid is (or isn't) doing , that is really all you need to understand for now ..... the real question is "are you getting enough/ the right amount / or too much of each ? " and as previously advised by many people on earlier replies , the only way to find that out is take the same dose for 6 weeks and then test your blood .... (taking more T4 now will just mean you have to start the 6 weeks again from today, so its not a good idea.... you need some consistency and some reliable blood test results so you know where you are, you do not need any more random /desperate dose changes. they will just make your body and digestive system more confused )

3 ......if you re concerned that perhaps one of the other ingredients in the T3 tablet is causing a bad reaction, like swelling up, or making your glands enlarged, then that is probably worth asking a new question on the forum with a new post , as i don't feel confident to help you decide what to do about that on my own , and not many other people will be seeing your replies so far down this very long old post . so writing a new post would probably be more helpful to you ... as long as you keep the information about your dose clear so people know what you are actually taking ... this post got rather lost and confused partly because no one knew really knew what dose you were taking.

Hope that helps a bit ? ... sorry if it sounds a bit short tempered /'shouty'.... i'm not 'shouting' honest .. just trying my best to keep to the relevant points and keep you on track cos your thoughts and understanding seem all over the place.

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Hi

Thank you for the reply.

I’m trying my hardest not to write but I can’t handle it tonight.

I’m blown up massive on my legs and face and arms.

Mentally I can’t cope with it so if I stop

T3 can I just stop taking it ? Or do I have to go down?

I’m on 3x 5mg a day now by doctor.

Is this because my

Dose is low and things will get better? My legs have huge indentation where socks go and my face is super bloated . I’m

Not eating more I’m eating less.

I really don’t get it

I don’t understand my T3 was 3.5 in November and t4 23 but I was on 50mcg previously . Then just increased it to 100mcg about a week before test so why was it higher? I read that t4 converts to

Reverse t4 so could a lower dose be better or it’s higher as it was better absorbed .

I’ve self medicated for years but never tested the proper dose until this year. That’s when 100mcg on consistency was 0.05 tsh 19 t4 and T3 2.1

The mental help T3 gives me is amazing. Energy ! But this bloating thing is getting worse . It’s creeping up everyday. It’s

Now 5.5 kilos over .

Could my natural T3 be so repressed now that T3 is non existent and need to be on higher dose? Also could my body be storing fat as

It going into starvation . It’s got a lot fatter in 2’weeks but exercised more!

tattybogle profile image
tattybogle in reply to Chouchou1234

" increased it to 100mcg about a week before test so why was it higher .. " those test results would be meaningless then, they don't tell you what your levels are on either 50mcg Levo or 100mcg Levo ..... ignore that set of test results . they were totally messed up by changing the dose a week before testing .

"I’m on 3x 5mg a day now by doctor. Is this because my Dose is low " well no, you're on 75mcg Levo + 3x 5mcg T3 .

This is not a low dose.

We don't know what your actual levels of fT4 and fT3 are because you haven't got had any reliable test results done yet .

(T3 has roughly 3 times the 'effect' of Levo .. meaning a dose of 75mcg Levo+15mcg T4 is generally considered to be roughly equivalent in 'effect' to a dose of 120mcg Levo , which is a pretty average sized dose.. definitely not a 'low' dose , especially for someone who is not particularly heavy or large built.

"Mentally I can’t cope with it so if I stop

T3 can I just stop taking it ? Or do I have to go down?

I’m on 3x 5mg a day now by doctor."

if you want to stop taking T3 all together , i think you should discuss this with whichever Doctor increased your T3 dose from 10mcg to 15mcg. It's not clear from any of your earlier replies why it was increased, from 10mcg without proper testing or who increased it (the endo who's gone on leave , or a different Doctor )

"Could my natural T3 be so repressed now that T3 is non existent and need to be on higher dose? " The only way you will know whether you need a higher or lower dose of T3 is to take a consistent dose for 6 weeks and then test properly (and consider any symptoms you have at 6 weeks)

Convincing yourself that you need more based on theories that you don't fully understand and without any solid test results to guide you is just asking for more trouble. Thyroid Hormones need to be adjusted slowly , carefully and with great respect., even for people who have no 'other' complications to deal with ... your digestive system is already in pretty serious trouble , and in the past you have taken excessive doses of thyroid hormone and laxatives and if i remember correctly from your other post tare still taking huge doses of laxative ? , so you need to be very cautious here or you may do yourself more harm than good.

I’ve self medicated for years but never tested the proper dose until this year. That’s when 100mcg on consistency was 0.05 tsh 19 t4 and T3 2.1

Your test results on 100mcg levo are meaningless if you changed dose a week before the test , you should ignore those results, they do not tell you what your thyroid was doing ,.. (it was still reacting to the recent dose change ), they do not tell you what level of T3 you were getting from either 75mcg Levo or 100mcg Levo. if tested properly after 6 weeks on consistent dose all three results would have probably have been quite different.

"I read that t4 converts to

Reverse t4 so could a lower dose be better or it’s higher as it was better absorbed ."

i think you are reading too much information and are trying to understand the complex bits before you have understood the basics, and are confusing yourself in the process . Here it seems like you have misunderstood something you've read about Reverse T3 ...because Reverse T4 does not exist , it's not a thing .

Reverse T3 is not relevant to you at the moment, and so it's not necessary for you to try to understand it yet .... You need to find out what your levels of T4 and T3 are on a consistent dose of Levo + T3. before you start looking into things like reverse T3.

You also need to find out if there is some ingredient in the T3 you are taking that is causing this swelling , and the way to do that might be to try a different brand of T3 tablet.. this needs to be discussed with whoever prescribed the T3 (or whoever raised the dose from 10 to 15mcg).

And you also need to decide if you want to keep taking the T3 at all, or if on balance you can't handle taking it and you want to see what happens to the swelling if you go back to just taking Levo. ... this too you should discuss with whoever prescribed the T3 (or whoever increased the dose from 10mcg to 15mcg)

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Hi hi

Thank you for reply.

Endo increased to 15 T3 but I only knew this when picking up medication from hospital pharmacy and ‘letter is in the post’ . Severe anxiety how this is managed as the message from secretary was if it helps great or go back to Levo only . Awaiting letter .

I can’t just wait and see 6 weeks while daily increasing weight. Having blind faith when the doctors are not monitoring and they have dismissed me. It’s obviously not right swelling up and weight gain ?! Correct?

I need to educate myself .

So I’m reading articles if someone can teach me how it works then I can understand but just being given medicine and not feeling good over tests that may be wrong ? Swelling up bloating and weight gain . That is not acceptable to me . There has to be a reason why .

I read a lot about reverse T3 and error on previous message t4 I meant T3

So where do I learn?

I read about abs so many articles .

thyroidpatients.ca/2019/11/...

My body is not feeling good. It’s super ‘stuffed’ I feel like I’ve been blown up .

I’m panicking as when it wears off I’m beyond exhausted paralysed. Putting on weight daily does not make sense eating less and exercising more.

So the body had a brake system. I took morning and lunch dose close together and at 6 am and 9am and now I feel dead exhausted. Not even ‘tired’ I can’t lift my head off the pillow . It’s too much. It’s super scarey . It’s like I’m paralysed. Literally moving my arm to get a drink is too much . Is t this my body shutting down when T3 is less in the cells due to quick half life .

My full blood count is normal . So no infection but read thyroiditis make gland swell . ??

Maybe suggest reading for me or what I should be expecting taking T3 . ?

Thank you again

our labs show a high reverse T3 level this means that you are converting most of your T4 into reverse T3. Reverse T3 is an isomer of T3. If you recall T3 is the most active form of thyroid and it is converted from T4 as needed. The problem with rT3 is that it will bind to T3 receptors but it has no activity � so high rT3 levels can give you signs of hypothyroidism even though the other thyroid hormones are in the "normal range".Things that cause you to increase rT3 levels are illness, starvation and excessive cortisol (stress). rT3 slows down metabolism and its theorized to aid in survival. Interestingly hibernating bears have high rT3 levels.

In your case I think the rT3 is coming from adrenal dysfunction (stress) but we also need to consider nutrient deficiencies. One of the treatments for high rT3 is to place you on a sustained release T3 for 2 or 3 months � the negative feedback to the pituitary will slow down the production of T4 and hence will slow down the production of rT3. You will feel better with lower rT3 levels since T3 will be able to bind unopposed to receptors.

tattybogle profile image
tattybogle in reply to Chouchou1234

thyroidpatientscanada is certainly a good place to look for accurate up to date scientific explanations when you want to understand something ... i would recommend it highly, and if you look on their 'site map' here thyroidpatients.ca/home/sit... you will find a huge list of just about everything you might ever want to know .However there is no point you trying to understand the scientific complexities if you don't understand the basics of how to properly monitor and adjust your thyroid treatment first, and how long you can expect it to take before things settle down once you've made a change.

If you panic and make changes to your dose (or your T3 dose times ) every few days you will never improve anything .... many people have repeatedly advised you to stop changing your dose and the timings and to give your body some much needed stability .... but from the following comment it looks like you have not yet understood that basic advice, or the very good reason for it . " I took morning and lunch dose close together and at 6 am and 9am and now I feel dead exhausted." ......

you need to stop fiddling around with the timings of your dose every few days , it's no wonder your body systems are all over the place , when taking T3 the body needs consistency and stability of the doses and the dose timings for systems to work properly (T4 is less fussy about timing ) ..... so stop panicking ,stop weighing and measuring yourself , take the same dose at the same time each day for 6 weeks and then get tested properly and post the results here so people can advise what you need to do next ..... once you have done that , you will have something worth discussing .. until then it it is all a rather pointless circular discussion with you getting lost in different bits of abstract science that may not even be relevant to you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"our labs show a high reverse T3 level this means that you are converting most of your T4 into reverse T3. Reverse T3 is an isomer of T3. If you recall T3 is the most active form of thyroid and it is converted from T4 as needed. The problem with rT3 is that it will bind to T3 receptors but it has no activity � so high rT3 levels can give you signs of hypothyroidism even though the other thyroid hormones are in the "normal range.

Things that cause you to increase rT3 levels are illness, starvation and excessive cortisol (stress). rT3 slows down metabolism and its theorized to aid in survival. Interestingly hibernating bears have high rT3 levels.

In your case I think the rT3 is coming from adrenal dysfunction (stress) but we also need to consider nutrient deficiencies. One of the treatments for high rT3 is to place you on a sustained release T3 for 2 or 3 months � the negative feedback to the pituitary will slow down the production of T4 and hence will slow down the production of rT3. You will feel better with lower rT3 levels since T3 will be able to bind unopposed to receptors.."

is it a letter from your endo ?..... that bit about 'rT3 binding to T3 receptors' is based on out of date/ incorrect thinking ... it is now known that reverseT3 cannot 'bind to T3 receptors' .. it's the wrong shape (it's 'reversed' like a mirror image of T3) , so it simply doesn't 'fit' . this is explained fully in the thyoidpatients.ca article you linked to.

There are dozens of other causes of high reverseT3 ... i'll tag greygoose who may be able to make more sense of the rest of what is written there .

My suspicion is that if they've got the 'binding to T3 receptors' bit wrong , they have probably got some of the rest of it wrong too.

greygoose profile image
greygoose in reply to tattybogle

Not today she can't. Eyes all swollen with the heat and barely able to see, let alone concentrate on Tania Smith! lol

In any case, rT3 is totally irrelevant to the present case. A total red herring. No way would it cause your legs to swell, Chouchou. It's inert and only stays in the body for a couple of hours before being converted to T2, T1, etc. Forget it, it doesn't concern you one little bit.

Chouchou, all you should be concerned with at the moment it staying on the same dose for six solid - not changes in quantity or timing, no adding in little bits because you don't feel well, it just doesn't work that way. It is not aspirin. And, as SlowDragon says you just have to accept that you are going to feel rotton of most of that time, and slowly improve. That is the only way you're going to get out of this mess. I think we're all agreed on that point, but you are arguing with us. Why? Why ask us if you don't trust what we tell you? We can't change our answers just because you don't like what we're saying. We're saying it for your good, to try and help you. Six weeks may seem like a life-time when you're not well, but six weeks is nothing compared to the time you've already been struggling with this and getting nowhere. We've all had our struggles to sort out with no help from doctors, so we do know what we're talking about. And, most importantly, we're still here! :)

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

That is information I read online. I haven’t got the doctors letter .My

Concern is maybe the dose is wrong - my throat And neck is hurting last 2

days like I’m being strangled.

If my t4 was 11 (12 to 22) last time

Isn’t that a huge drop and causing more problems. This has not been addressed. 75mcg 🥺

Thank you 🙏

I’m

Reading up thank you very much.

tattybogle profile image
tattybogle in reply to Chouchou1234

"That is information I read online" .....well its inaccurate , and its not about you .. so please just ignore it... and don't blindly trust anything else you read from wherever you found that.... like i said you are reading too much complicated stuff and just confusing yourself.

"My Concern is maybe the dose is wrong " .......well of course it's 'wrong' at the moment .. everyone's dose is 'wrong' until they carefully titrate it to get to the best dose for them.... it would be a miracle if your dose was 'right' at this point.. the only way to find the 'right' dose is by taking the same dose consistently for 6 weeks ,then testing properly ,then assessing the symptoms and the blood results , and THEN adjusting carefully by small amounts, one thing at a time (not adjusting Levo and T3 together) and taking that adjusted dose for 6 weeks etc etc .. there is no other way ... you can't expect to land on the right dose and feel better in just a few days/ weeks...... no matter how much you read.

"If my t4 was 11 (12 to 22) last time

Isn’t that a huge drop and causing more problems."

......... were you taking 75mcg Levo + 10mcg T3 consistently for 6 weeks before that blood test ??

if not, it's a meaningless number and you should ignore the results and stop worrying about it until you have been on 75mcg and 15mcg T3 for 6 weeks and got some reliable blood tests done .

You do need to realise that adjusting thyroid hormone and seeing improvements when you are in as much of a mess as you are does take a long while .. and for a lot of that time you will feel horrible and any improvements could be erm.... 'glacial'.

You seem to think if you can find the right dose tomorrow, you will start to feel better tomorrow ,, but that is not how it works at all , it's a long job with logical stages and hopefully if the stages are done correctly , there will be gradual improvements.

Think 'months' ... not 'days' ...... a lot of patience is required.

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

I get what you are saying but it may give an indication of being under treatment as I was in hospital 3 times as zero motility. They wanted to give me feeding tube. That’s their answer I have today had milkshake protein and 2 scrambled eggs and can’t eat anything as zero motility it just sits there . It was never this bad . Waiting another 6 weeks . If that test showed 11 T4 even if it was a little off it shows severely low ? I would rather have faster thyroid no so at least I can eat or go to the toilet .

tattybogle profile image
tattybogle in reply to Chouchou1234

again , you haven't answered the pertinent question that was asked ... ie how long had you been taking a consistent dose of 75mcg Levo +10mcg T3 when you had that blood test done ? (assuming that is what you were taking for that blood test, it's not at all clear)

Nobody can give you any useful advice based on your blood tests if you don't answer any relevant questions about how they were done , and if what little information you do give is inconsistent, eg 3 days ago you told me " I increased to 15 not doctors...I have increased it to 15 mcg not been told to.." but today you said the endo increased it to 15 and you only found out when you picked the prescription up.

Overusing thyroid hormone in desperation without knowing what you were doing in order to to go to the toilet, is partly what got you into this mess in the first place. If you are intent on ignoring all the advice you asked for and doing the same thing again, there is not much anyone can do to stop you ... you don't need our permission . You came for advice ... we've all given it .. you are not listening to it.

Don't know what else there is to say really.

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

I am listening and taking on board what you are saying. But my concern is with my

Severe symptoms and extremely low t3

- I have not seen 1 post with T3 at 2.1 as mine was 8 weeks ago.

With the reduction of t4 to only 11 (12 to22)

I was on 75mcg Levo and 10mcg T3

Some

Days I took 50 but the majority was 75. So if it is slightly off it’s still very low ?

My leg swelling gets worse throughout the day

My food intake is reduced and still gaining.

I was told that T3 suppresses my T3 so if it’s suppressing even more and I don’t have enough in my body I’m

Just getting worse.

I’m petrified living in fear. Exhausted to even take a shower - 20 minutes out of bed that’s with t3 I could not move this morning before T3 . Nothing almost called an ambulance I could t even lift

My head . Take the T3 and and I’m up.

I took my dose at 3am then 9am ( I read

About better to take then. ) now it’s 3.30pm can’t move

My

Head off the pillow. The extremes

Are insane. Also mood wise . Highs and lows. Also my lows are so low.

It’s embarrassing I don’t have the strength energy to even shower and get dressed properly- but I’m on my own and need food so go out looking like a mess. I’m a former model and fashion business owner in New York 15 years ago to being bed bound and isolated. I have no support or family. My mother and sister are very abusive emotionally and mentally . They call me a waste of space - ‘disgusting’ - lazy - waste of space as I’m in bed all the time. It wasn’t until last year when my

T3 came back as

2.3 it started making sense why I maybe so tired and in pain and can’t digest.

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Hi I’m in tears having a nervous breakdown.

I took my last dose . I have swollen up even more. I can’t eat not even hungry but its

Severe fear. How can it be that it’s so bad . Everything is massive - waist up 9 inches .

Legs up 4 inches

Rehydrating well.

My face has gone massively puffy

Severely constipated.

I can’t cope

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Also I’m not hungry at all . Normally I’m quite ravenous when I take t4 at least but zeroZero appetite. Another sign my thyroid has stopped workin g

tattybogle profile image
tattybogle in reply to Chouchou1234

couchou , there is nothing useful i can add to what i and others have already spent a long time advising you to do . Come back with a new post once you have some blood results from being on a consistent dose for 6 weeks.

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Hi it’s 23.45

Last dose at 5pm

Zero digestion now . Could it have gone super low . I eat late as I want to avoid pain all day so eat about 9 or ten pm just as I can’t face the pain . But all my T3 is early 3 am starting .

Now it’s so bad o do t know what to do.

If my T3 was 3,5 last October I must of achieved that. With t4 but I was not on dose higher than 100 . Without massive swelling

So confused

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

hormone cortisol, which directly influences fluid retention and water weight ( 10 ). This may occur because stress and cortisol increase a hormone that controls water balance in the body, known as the antidiuretic hormone or ADH ( 11 ).9 Aug 2018

I think the T3 causing this x

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Also I don’t have Hashimotos’s and negative for the other test .

Chouchou1234 profile image
Chouchou1234 in reply to SlowDragon

hormone cortisol, which directly influences fluid retention and water weight ( 10 ). This may occur because stress and cortisol increase a hormone that controls water balance in the body, known as the antidiuretic hormone or ADH ( 11 ).9 Aug 2018

Kccaviler profile image
Kccaviler

Hi Chouchou1234

Just out of interest has anyone ever tested you for EDS. I have the version that not only causes hypermobility, but all the GI problems you have. I have gastroparesis, lack of peristalsis in my intestines and had a large intestine prolapse and had to get a few feet removed. Basically all your symptoms jump out at me saying EDS.

I went to see a doctor in London who specialises in this a few years ago and he prescribed me resolor and it was a game changer for bowel movement. Still have many problems, but knowing what I was dealing with really helped.

Chouchou1234 profile image
Chouchou1234 in reply to Kccaviler

HiThank you for the reply.

I have that prucalpride- it was a game changer when I started but doesn’t really work now. It spasms and nothing goes through.

I am not hyper mobile or double jointed etc. good thinking though!

.taking T3 I would expect things to be better but not.

Thank you

Chelsea

tattybogle profile image
tattybogle

"I just took my last dose for today and twinge of peristalsis "That's good ... keep taking the same dose at the same time until you've been on it for 6 weeks . Hopefully things will slowly improve as your body get's some stability.

Then sort out a blood test after you've been on this dose for 6 weeks , and then you can see where your fT4 and fT3 levels are. Post the results here when you get them and people can advise if your dose should be adjusted at that point.

You may need to do a private blood test if your GP can't / wont test both fT3 and fT4 ....re read the previous replies to this post, and see if anyone has already given you the details of how/where to get private Thyroid blood tests done .. eg Monitor My Health is an NHS postal service . they can do TSH , fT4 and fT3 for under £30 .. its a fingerprick test that you post off .

in the meantime try not to panic, and just accept that adjusting the dose of Levo and T3 to find the best levels for you will take time and needs to be done carefully with proper blood tests so you know where you are .. and accept that your body needs lots of time to get used to the current dose before you know how you will feel on it.

Try not to worry so much about all those "what if ??"s.

First thing's first ... consistent dose for 6 weeks is the first thing. Then test .

Don't tie yourself knots thinking about anything else for now , it's pointless.

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Please I need help writing to my gastro doctor . I need to put my case across he’s very very helpful and will help but if you can give me as much information or research or points I need to tell him or ask - Basically a titration method improvement symptoms

Improvement motility

Stomach acid ?

Peristalsis?

You are the experts - from my limited research if T3 is low - isn’t that severe weight gain water retention and zero peristalsis!

I don’t eat normal amount a person does a tiny amount tiny and still gaining weight .

Please I’m writing to my gastro today please please from your vast experience and contacts 2.1 T3 would cause digestion to shut down with low t4 of 11 . ???? Please as I can get his help with regards to titration monitoring and get the endo team involved as my endo has pretty much said try this and appointment letter for December !!

I need to put my case forward .

Please can you help me with any information- points I should mention as I can’t cope anymore .

Living off laxatives for motility is making everything worse .

But the gland swelling is definitely connected to T3 . As I get it after I take it .

I’m in desperation now and they just want to put me on a feeding tube . I have been dismissed by endo team but my

Gastro is super helpful so if sees improvement he will push for me .

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Is it possible T3 making peristalsis worse ? Something is very wrong . Can’t even move liquid through

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Also I’m shivering cold today

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

The contraction of the gallbladder slows down when there is insufficient thyroid hormone (T4). If my t4 is very low 11 .

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Zero zero peristalsis! I think I have yo a and e I can’t go at all and blown up but been peeing loads . Never been so depressed in my life

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

I’m having my thyroid checked tomorrow ive been on 75mcg consistently and 24 hours after last dose . They need it for pre operation assessment. T3 not being checked .

Definitely I think cortisol- it may explain why swelling legs and also

It’s pure adrenaline feeling a bit much - then the lows though.

I was advised by a private doctor who is a friend of friend with my low levels to be on at least 25 to 30 a day! Is that right ?

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

paulrobinsonthyroid.com/mor...

Help . I don’t know why my stomach stopped working so bad never been this bad

Chouchou1234 profile image
Chouchou1234 in reply to tattybogle

Help ! I’m in tears X I took last dose of T3 the epigastric bloating and pain and pain in throat and left ear gone deaf .

Bloating stomach and legs . I can’t cope . Why is this happening?

The anaesthetic doctor for pre surgery called and said I need to move my t4 to 125mcg as very low. Was 11 .

This is a month of being ignored

Lalatoot profile image
Lalatoot

Chouchou sorry things are far from right. Because your latest post is somewhere in the middle of your last post you won't get many replies.Best to start a new post when you need support .

Chouchou1234 profile image
Chouchou1234 in reply to Lalatoot

Thank you

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