Constantly gaining weight, can't tolerate meds ... - Thyroid UK

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Constantly gaining weight, can't tolerate meds and feel worse than ever ... Can anyone out there help me?

Tiredofthis77 profile image
60 Replies

Hi all,

I'm continuing to weight gain on thyroxine and have never felt so bad. My hair is falling out, I'm the fattest I've ever been - with almost 2st gain since December - I'm never hungry, I'm emotional, have a sore stomach, I can't think straight, got a rapid heart rate and I also started getting pretty breathless in November.

I was off thyroxine for a year as I kept gaining weight on it previously, so much so that my doctor thought I didn't need it. I didn't feel well off it but some of the weight slowly came off. However, a health check at work last February raised questions over the rapid heart rate and weight.

I found a new GP who put me on thyoxine again around this time last year. My heart rate normalised and I felt great for a while. But that ended as my meds increased. My heart rate also increased again (100bpm resting, and as much as 140 when out for a walk) but betablockers keep it in check now.

I had to stop when I reached 100mcg in December as I couldn't sleep at night and my mood swings were mental. Now I'm on 50mcg but feeling worse than ever. When I used to stop thyroxine I would start to feel better within days but that is no longer the case.

I have the dodgy DIO2 gene from one parent. As I result I tried a tiny dose of T3 and I couldn't tolerate that either.

I've been off gluten for more than a month, and found no benefit at all.

I've also had an adrenal test out of desperation. Results attached.

Getting a doc appointment is a bit of a struggle at the moment given the situation and I'm not sure if seeing my doc would be useful anyway.

I'd be ever so grateful if anyone can suggest anything at all to help me as I'm really struggling and I don't know what to do.

Most recent blood tests when on 75mcg:

TSH 2.34 (0.55-4.78)

FT4 18 (10-25)

FT3 4.7 (4.0-7.0)

Thanks for listening,

Tired x

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greygoose profile image
greygoose

You don't convert very well. Your FT3 is very low, and for that reason you are very under-medicated - your TSH is too high.

Did you get nutrients done with that blood test: vit D, vit B12, folate, ferritin? Low nutrients can cause poor conversion. Also, low calorie intake. If you have no appetite, perhaps you're not getting enough calories.

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Hello greygoose,

Sorry for the delay in responding - I've been very unwell. It's been a month since I've posted and that's another 7lbs gained. It's unbelievable. I am getting enough calories, but i know I'm also not eating enough to justify the constant gain. I just can't seem to tolerate my thyroxine. I feel the same with T3 too. I'm okay to start with then it all seems to build up and give me horrific symptoms such as bloating, sore stomach, itchy skin, mood swings, weight gain.

I had full profile done by Thriva and Vit D, folate, B12, ferritin all came back as 'normal'.

Ferritin 35.8

ug/L

(range 44-150)

Folate 13.9

nmol/L (normal range 8.83-40)

Vit D 59.7

nmol/L (classed as 'sufficient') (normal range 50-175 with optimal 75-100)

B12 475

pmol/L (normal range 300-569)

I also got a thyroid profile done too (this was after 5 weeks of not being on anything - I had to stop as weight was piling on and I felt extremely toxic)

FT3 4.07

pmol/L (optimal range 3.1-5)

TSH 5.6

mIU/L (optimal range 1-2.5)

Thyroglobulin antibodies (TgAB)

53

kU/L (normal range 0-115)

Thyroid peroxidase antibodies (TPOAb)

13.3

kIU/L (normal range 0-34)

Thyroxine 77.1

nmol/L (normal range 0-34) (normal range 66-181)

Free thyroxine (FT4)

13.7

pmol/L (optimal range 12-17)

Any observations or suggestions would be greatfully received. I really appreciate you taking the time to read this.

Tired

greygoose profile image
greygoose in reply toTiredofthis77

It's been a month since I've posted and that's another 7lbs gained. It's unbelievable. I am getting enough calories, but i know I'm also not eating enough to justify the constant gain.

How many calories do you consider to be enough?

With your low FT3, it's perfectly possible to put on 7 lbs in a month. I once put on 14 lbs in two weeks! But, it's not fat, it's water, and nothing to do with what you eat. You are hypo, with low metabolism, and a problem with water-retention. Sometimes, under those circumstances, eating more can make you lose weight. It improves your conversion and your nutrient levels, and you will no-longer be in starvation mode, where the body feels it has to hang on to as much energy as it can.

I had full profile done by Thriva and Vit D, folate, B12, ferritin all came back as 'normal'.

Ferritin 35.8 ug/L (range 44-150)

No way would I call that normal! It's below range!!! It needs further investigation by your doctor, a full iron panel, etc. No wonder you don't feel well.

Vit D 59.7 nmol/L (classed as 'sufficient') (normal range 50-175 with optimal 75-100)

We want 'optimal', not 'sufficient'. That's far too low.

B12 475 pmol/L (normal range 300-569)

The top of that range is far too low. The Japanese start their range at 500! I would want my B12 at least over 550.

FT3 4.07 pmol/L (optimal range 3.1-5)

I am really not impressed by the lab that did these assays, and their comments. An FT3 of 3.1 would be far from optimal! Yours isn't much better at 4. Hypos usually need their FT3 nearer the top of the range.

TSH 5.6 mIU/L (optimal range 1-2.5)

Look at how far above the top of the range that TSH is. You are very hypo.

Free thyroxine (FT4) 13.7 pmol/L (optimal range 12-17)

That's much too low, too.

The antibodies are negative, but that doesn't mean much. You could still have Hashi's.

I just can't seem to tolerate my thyroxine. I feel the same with T3 too. I'm okay to start with then it all seems to build up and give me horrific symptoms such as bloating, sore stomach, itchy skin, mood swings, weight gain.

Hmmm… Seems to me that what those symptoms are telling you is not that you can't tolerate thyroxine/T3, but that you're not taking enough and it's time for an increase in dose. That is the usual pattern. You feel better on an increased dose, but then symptoms come creeping back in. It just means you need to increase the dose, not stop it altogether.

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

HI Greygoose,

I followed your advice and took more thyroxine to see what would happen. I upped my dose to 125mcg then 150mcg. It has improved things a little (less hair falling out and my nails haven't been this strong for years) but my stomach is so swollen I look pregnant and now I have stretch marks galore. My clothes no longer fit me and I'm now really breathless. I'm generally feeling terrible, with a sore stomach and I'm not sleeping for long ie I'm waking up in the middle of the night ie 3pm and can't get back to sleep. My right foot has swelled right up, too, which is bizarre.

I phoned my doc who couldn't get me off the phone quick enough... but she told me to get more blood tests done and that she would speak to my endo. That was two weeks ago and I've heard nothing. Last week I phoned to get my results and the receptionist told me everything was fine and that my T4 was raised "a little"... My TSH is 0.34 (0.55-4.78) but my T4 is 33 (10-25). I don't know what to do anymore... Any suggestions?

Thanks in advance,

Tired.

greygoose profile image
greygoose in reply toTiredofthis77

I suppose they didn't test the FT3? Without that number, it's difficult to suggest anything. But, in these results:

TSH 2.34 (0.55-4.78)

FT4 18 (10-25)

FT3 4.7 (4.0-7.0)

You are showing poor conversion. So, could be that you need T3 again. How much were you taking when you took it before?

greygoose profile image
greygoose in reply togreygoose

Have you done anything about your low nutrients yet?

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

I'm taking ferrous fumarate and have upped my vit d, too, but my B12 injections have stopped due to lockdown

greygoose profile image
greygoose in reply toTiredofthis77

Are you taking vit C with the ferrous fumarate to help with absorption?

Are you taking magnesium and vit K2-MK7 with the vit D?

Are you at least taking a B complex - and perhaps some daily sublingual B12 - even though you can't have your B12 injections?

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

No, I wasn't aware I needed to take vit C, magnesium and vit K2-MK7. I will look into that now.

greygoose profile image
greygoose in reply toTiredofthis77

It's mentioned time and time again on here that you need to take cofactors as well as the nutrient you're trying to optimise. Some things just work together.

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

I know, I asked for T3 to be tested but they probably didn't think it was relevant. You know something I can't remember how much I took before. It was a long time ago and my memory has deteriorated. What would be a good starting dose? I've had to stop taking thyroxine as I'm climbing the walls.

greygoose profile image
greygoose in reply toTiredofthis77

One follows the rules for taking hormones: start low and increase slowly. For T3 that means starting at 1/4 tablet and increasing by 1/4 tablet every two weeks until you reach one full tablet, then hold for six weeks and retest. But, if your doctor won't test FT3, you will have to do it privately. You need to know your level before starting T3.

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Hello again, what levels of vit C, magnesium and vit K2-MK7 should I be taking? Would you know of any good brands? Going to order a new FT3 test. What strength of T3 tablet are you referring to re the 1/4 tablet dosage? Sorry for all the questions, just need to take action - been too ill for too long.

greygoose profile image
greygoose in reply toTiredofthis77

With vit C, the sky's almost the limit. Take as much as you can tolerate. Take it throughout the day. You need vit C for all sorts of reasons. With your iron, take 1000 mg.

For women, 350 mg magnesium is usually recommended.

I think you'll find that most brands of K2 come in 200 mcg tablets.

I don't have any particular brands to recommend, but if you get your supplements on Amazon, most of the brands are good.

Apart from the 5 mcg tablets, which are expensive and not many people buy, T3 comes in two strengths: 20 and 25 mcg. When you cut the tablet in quarters - 5 or 6.25 mcg - the difference is so small, it really doesn't make much difference. I imagine you have either 20 or 25 mcg tablets, don't you? So, a quarter of one of those. :)

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Thank you - that's most helpful as always. I have 25mcg at the moment so I'll stick with that. :)

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Morning, what's your thoughts on RT3? I just got my results this morning an it's off the scale

greygoose profile image
greygoose in reply toTiredofthis77

It's not helpful to test rT3 because there are so many causes - and only one of them have anything to do with thyroid.

If your rT3 is high, it's nothing to do with your thyroid because your FT4 is too low to cause over-range rT3.

Other possible causes of high rT3:

* Chronic fatigue

* Acute illness and injury

* Chronic disease

* Increased cortisol (stress)

* Low cortisol (adrenal fatigue)

* Low iron

* Lyme disease

* Chronic inflammation

* Selenium deficiency

* Excess physical, mental and environmental stresses

* Beta-blocker long-term use such as propranolol, metoprolol, etc.

* Physical injury is a common cause of increased RT3

* Viruses, such as flu

* Starvation/severe calorie restriction

* Mistreated diabetes

* Cirrhosis of the liver

* Fatty liver disease

* Renal Failure.

* Fever of unknown cause

* Detoxing high heavy metals levels

* Etc. etc. etc.

Maybe one - or several - of those rings a bell? It could be difficult to find the cause. But, one thing is sure, it's not your thyroid hormone replacement causing it, because your FT4 is too low.

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Hi greygoose, appreciate your feedback.

The last time I was tested my FT4 was 33 (10-25). TSH 0.34 (0.55-4.78)

My first ever RT3 test shows 40 (10-24). Still awaiting latest FT3 and FT4, which were taken on the same day.

greygoose profile image
greygoose in reply toTiredofthis77

OK, so, I was going on the results in your original post:

Most recent blood tests when on 75mcg:

TSH 2.34 (0.55-4.78)

FT4 18 (10-25)

FT3 4.7 (4.0-7.0)

Were these done before or after the results above? It really would help if you gave dates with your results. Otherwise, we have no idea of the time-line. When was that rT3 test done? At the same time as these: FT4 was 33 (10-25). TSH 0.34 (0.55-4.78)? If so, that would account for the high rT3. So, how much levo were you taking at that point?

If the high rT3 was due to the FT4 being 33, then all you had to do was reduce your levo. But, do you have Hashi's? If so, there's not much you can do about that high rT3. They will both go down of their own accord. In any case, the rT3 test is still not helpful in any way. It will tell you if your rT3 is high, but it won't say why.

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Sorry, yeah, the ones above are from quite a while ago. The RT3 test was done on June 2 and the high FT4 one was from June 1. My hair stopped falling out when I was on 150mcg (I used to be on 200mcg a decade ago but now I can't seem to tolerate T4. They may well both go down but I feel like I'm going round in circles and no health professional doesn't appear to have the answer.

greygoose profile image
greygoose in reply toTiredofthis77

OK, so, as AnnaSo says, if your FT4 was 33, not surprising your rT3 was high. But, are you saying that you weren't taking any levo at that time?

So, do you have Hashi's?

With an FT4 at 33, not really surprising you can't tolerate levo. You don't need it. Yet you're saying that you're still hypo? I really don't understand. What makes you say you're still hypo?

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

I was taking 150mcg of levo at the time. I still have a raft of hypo symptoms - my medication doesn't work at all - it just makes me feel worse. I was told I have antibodies years ago, but it's not showing up now

greygoose profile image
greygoose in reply toTiredofthis77

Well, your medication obviously does work, or you wouldn't have an FT4 of 33. It may not be improving your symptoms, but it's doing what it's supposed to do, and increasing your hormone levels.

When you say you were told you had antibodies years ago, does that mean over-range antibodies? Because everybody has some antibodies, but you only have Hashi's if your antibodies are over-range. But, if your antibodies were over-range, then you do have Hashi's, so you will still have Hashi's, no matter what the levels are now. Antibodies fluctuate, so it's not even worth retesting them, but Hashi's doesn't go away.

So, that FT4 of 33 could have been due to over-medication, or it could be a Hashi's 'hyper' swing. Do you have any other results from when you were on 150 mcg levo?

The fact that levo is not resolving your symptoms could be down to several things: poor conversion; nutritional deficiencies; low/high cortisol… Do you have any test results for any of those?

But, whatever the reason, high rT3 is not responsible for your continuing symptoms. So, if I were you, I'd forget about that.

You say below that: I did take medication on the day of the test. So, approximately how long was the gap between your last dose of levo and the blood draw? What time of day was that test.

You must understand how important it is to give all the details, with all the numbers: dates and doses, results and ranges. Otherwise, people go barking up the wrong tree. It would now appear that that FT4 of 33 wasn't due to over-medication, nor a Hashi's swing, it was due to taking your levo too close to the blood draw. It really is very difficult to help you when we only get information in dribs and drabs like that. Sorry, but looks like we're back to square one.

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Sorry I won't bother you again

greygoose profile image
greygoose in reply toTiredofthis77

No, you've misunderstood what I said. I'm trying to help you - I want to help you. I've been thinking this over all day, but then find I'm basing my thoughts on a false premise. Surely you must see how important it is to give all the facts?

I would suggest that you write out a time-line. I often find it helps people to do this:

Date

Dose

Symptoms

blood test results

and gap left between last dose of thyroid hormone and blood draw.

It'll get things clearer in your mind and then you'll be able to explain exactly how things happened to other people. :)

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Sorry, I'm just a bit emotional today. I feel terrible and 20 years in I'm no further forward. I appreciate the help, I do.

greygoose profile image
greygoose in reply toTiredofthis77

I know, it's understandable.

Have you ever tried NDT? Maybe that would be better for you.

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Hello, I have tried NDT in the past (about 15 or so years ago). I can't remember why that was stopped. I fought so hard for it but I don't think they deemed it that worthy. I took another test last week (mainly because the doc didn't test my T3 last time and I am seriously considering trying T3).

I took the test four days after stopping thyroxine (150mcg for six weeks) as I couldn't bear to take it any more. Here are the results:

Blood draw June 18

TSH

0.942 (0.27- 4.2)

FT3 3.84

(3.1-6.8)

FT4

15.3 (12-22)

It would be great to get your thoughts. I am now on the vitamins you all suggested too.

My previous results while on 150mcg for six weeks (I took medication on the day of the blood draw (probably within an 2 hours or so) as I didn't expect to get an appointment on that day were:

Blood draw June 1

FT4 33 (10-25)

TSH 0.34 (0.55-4.78)

I'm not feeling in a good way at all. I'm really breathless now and I can't even go for a stroll - yesterday my heart-rate reached 160bpm when I was wandering on a flat road.

Thanks in advance,

Tired

greygoose profile image
greygoose in reply toTiredofthis77

FT3 3.84 (3.1-6.8)

FT4 15.3 (12-22)

OK, so you have a false 'low' FT4 result, there, as you'd stopped the levo for four days. But, even so, it's obvious that you are a very poor converter. Your FT3 is much too low, and that is why you feel so bad. It's T3 that causes symptoms when it's too high or too low.

So, taking T3, with a reduced dose of levo, would be a very good idea. Or, going back to NDT. But, to be honest, with such poor conversion, there would probably be too much T4/not enough T3 for you in NDT. A T4/T3 combo would be better because it's more flexible. :)

AnnaSo profile image
AnnaSo in reply toTiredofthis77

With FT4 at 33 no wonder you have high RT3! Did you take medication before going to the blood test?

Also did you drop levothyroxine?

It looks like symptoms are likely due to your vitamins’ deficiencies and too low dose of levothyroxine not levothyroxine itself.

Tiredofthis77 profile image
Tiredofthis77 in reply toAnnaSo

I've had to stop thyroxine. I can't seem to tolerate even the tiniest of doses any more. My doc told me to try taking 200 as I'm still super hypo but could only manage 150 for six weeks.

AnnaSo profile image
AnnaSo in reply toTiredofthis77

What symptoms do you have after taking levothyroxine? So you’re not on any medication now?

And did you take your medication in the morning before going to the blood test when the reading was FT4 33?

Tiredofthis77 profile image
Tiredofthis77 in reply toAnnaSo

I had to stop. The main one is accelerated weight gain, which is bizarre, jumpiness, inability to concentrate, swollen legs/feet, palpitations, sore stomach, loss of appetite. I could go on

AnnaSo profile image
AnnaSo in reply toTiredofthis77

I see. And these symptoms only show up when you’re on Levothyroxine?

You’re not answering whether you’re on medication now or whether you took medication before the blood test. It’s important you are on some sort of medication or you’ll do yourself harm in the long term. Also it’s important to know if you took medication before that blood test to interpret your results correctly.

What country are you in? It’s important to get you on medication again, perhaps NDT if you couldn’t tolerate T3 either.

It’s possible your body cannot process levothyroxine property because of your low nutrients levels, hence the symptoms you’re experiencing. In those scenarios no matter what medication you’d be put on you’ll feel unwell. Getting nutrients optional is a crucial part of the healing.

Tiredofthis77 profile image
Tiredofthis77 in reply toAnnaSo

Yeah, they seem to get worse when I'm on thyroxine. The weight gain is immense when I'm on it. My endocrinologist took me off it for a year, saying he didn't think I needed to be on it any more. I had to fight to get back on it and things have gone from bad to worse in the space of a year. I did take medication on the day of the test. I felt worse than normal that day and doc told me to go in for a blood test. She also said she would pass results to endo. That was 21 days ago and no one has been in touch - even with a raised T4. I'm in the UK. I'm going to try T3 when I get rid of the toxic feeling.

AnnaSo profile image
AnnaSo in reply toTiredofthis77

Seems like you’re had a very poor treatment just like many others here on the forum. Your endocrinologist seems like a complete lunatic to take you off medication.

I suspected you took medication that morning hence the very high reading of FT4 at 33. Ignore that test or tell members that you took medication prior as levothyroxine artificially inflated your FT4 reading so it’s impossible to interpret. Otherwise members will give you a wrong advice.

If you’re determined to stay off levothyroxine please do work on your nutrients in the meantime, only then will your body be able to process any T3 in either NDT or liothyronine.

fuchsia-pink profile image
fuchsia-pink

I don't convert well either - but when I was put on lio as well as levo finally managed to lose weight. Can you ask to be referred to an endo for a trial of lio - or get the list of T3-friendly endos from Dionne at Thyroid UK - tukadmin@thyroiduk.org

Tiredofthis77 profile image
Tiredofthis77 in reply tofuchsia-pink

I can't seem to tolerate any meds at all. Both thyroxine and T3 used to work for me years ago but not now :(

AnnaSo profile image
AnnaSo in reply toTiredofthis77

That could well be because your nutrient levels were better back then.

SlowDragon profile image
SlowDragonAdministrator

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

When were vitamin levels last tested?

What vitamin supplements are you currently taking?

EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Levothyroxine should always be taken empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

Clearly you are currently under medicated and Ft3 extremely low

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Vitamins need to be optimal to enable dose increase

DippyDame profile image
DippyDame

Your medics haven't done you any favours!

TSH should be close to 1

FT3 is only 23.33% through the range

FT4 is 53.33% through the range

Both Frees should be close to 75% through the range

You are clearly hypothyroid and undermedicated

To support thyroid function folate, ferritin, Vit D and Vit B12 need to be optimal. Have you had nutrients tested?

I tested Dio2/homozygous which results in poor conversion, heterozygous not so much so, however poor conversion can also be evidenced by high (ish) FT4 and low FT3...as in your labs.

For how long were you taking thyroxine? You should not start and stop thyroid hormones, the body needs a constant and steady supply. Not a surprise that you feel unwell with both symptoms and labs indicating hypothyroidism....and poor treatment!

Finding the right hormone combined with the right dose is the challenge.

Did you take the "tiny dose" of T3 alone or with thyroxine...that isn't clear from your post.

T3 is a very powerful hormone and must be treated with understanding and respect. It may be that you need T3 but make sure you have given thyroxine a fair trial before doing so and then I suggest you ask advice from members here before adding T3....without their help I doubt I'd now be replying to your post!

A starter dose of thyroxine is 25mcg, you should be tested after six weeks and your dose increased similarly until your symptoms improve.

There is no quick cure for hypothyroidism (think headache/paracetamol)

I'm not a medic just another patient who has had to negotiate the rocky road that is hypothyroidism....just a few thoughts.

Good luck

DD

salsapixie profile image
salsapixie

I’d ask to be referred to Endocrinology. I’ve been under them for two years, and finally felt normal again within a few months. Hope you feel better soon.

Lozza812 profile image
Lozza812

Bless you, I am so sorry you are feeling so awful. I have a similar experience to you. Feel worse on thyroxine, hair falling out by the handful. I was tested again recently, all normal and within range and dont feel like I can go back to the Dr's whilst this crisis is on.

Its bloody crippling and its god damned not fair!

penny profile image
penny in reply toLozza812

Beware those words “normal” and ‘within range’.

DippyDame profile image
DippyDame in reply toLozza812

You're right....it's not fair! Over 100,000 members here probably feel the same!!

Just noticed your reply above.

You really have been through the mill, the result of medics lack of knowledge about thyroid function, diagnosis and treatment!

thyroiduk.org.uk/tuk/about_...

A year ago your results were -

FT4 22.4 (12 -22) 104% through the range - very high.

This usually indicates poor conversion of the storage hormone T4 to the active hormone T3

FT3 5.7 (3.1 -6.8) 70.27% through the range - about right.

This should rise a little as conversion is improved

Your TSH was suppressed and I guess your GPs were dosing by TSH which is wrong....I.e they thought suppressed TSH indicated overmedication so lowered your dose. Ideally TSH should be close to 1.

We don't know the diagnostic test results which your GP used to initiate treatment but you say you were originally started on 100mcg thyroxine....well, that GP must have missed or slept through thyroid lectures!

You are entitled to ask your surgery for copies of any lab results....post those and members will advise

The starting dose for levothyroxine is 25mcg followed by testing (to check changing levels) after 6/8 weeks .

The dose should then be increased by 25mcg and tested again in 6 -8 weeks, this should be repeated until FT4 and FT3 are around 75% through the range and importantly until your symptoms are relieved.

Are you still taking 50mcg levo? This needs to be checked.

Your nutrients are far too low, for good conversion of T4 to T3 nutrients need to be optimal. You need to work on this by supplementing and healthy eating. SeasideSusie knows a lot about nutrients read her posts and replies for more info

thyroiduk.org.uk/tuk/treatm...

Your antibodies are fine so no Hashimoto's....

I'm not a medic but I suggest you first need to raise your nutrients to optimal, that should improve your conversion. Test and monitor FT3 and FT4. Your FT4 should fall when conversion is improved.

If this doesn't improve your health then there are other options to be investigated......but first things first.

I found I had to do a great deal of background reading in order to start to recover....and crucially I had much help and guidance from forum members. The well informed members are far more knowledgeable than most GPs or endos....sad but true.

thyroiduk.org.uk/tuk/thyroi...

Just a few thought that you might consider.

Feel free to post questions on the forum....it was amazing help from members that helped me to discover my problem and to treat my ill health

Good luck

DD

Tiredofthis77 profile image
Tiredofthis77 in reply toDippyDame

Hi DippyDame,

Thank you.... I've upped my nutrients as well as upping my thyroxine in a little experiment during lockdown. And it's not good... My TSH is now 0.34 (0.55-4.78) and T4 is sitting at 33 (10-25) (they didn't test my T3). My hair loss isn't as bad and my nails have never been so strong but I feel terrible. Weight gain, feel really toxic and can't concentrate on anything. I'm also struggling to sleep at night. Any thoughts?

Thanks for listening,

Tired

DippyDame profile image
DippyDame in reply toTiredofthis77

Adding more LT4 when your labs showed high - 33 (10-25) - wasn't a wise idea you are overmedicated now.

As I suggested retest (TSH, FT4, FT3, folate, ferritin, vit D vit B12 and antibodies) after you have optimised your nutrients, hopefully that will improve your conversion.

I use Medichecks for testing.

thyroiduk.org/getting-a-dia...

Once the status of your conversion is established ...good being both FT4 and FT3 sitting around 75% through the ref range

a) poor conversion usually suggests (initially) the addition of a tiny dose of T3 ...6.25mcg

b) titrate T4/T3 which can be a case of trial and error I'm afraid, starting with your current dose of LT4.

How much LT4 are you taking right now? Sorry, without that we can't suggest amounts because we are all different. We need to listen to our bodies!

All the time being aware that T3 is very potent and needs to be used with understanding and respect!

You need to trial this until your symptoms are relieved....

If this doesn't improve things you may have a form of thyroid hormone resistance (RTH) and trialling T3-only may be helpful.

I suggest you read as much as possible including old posts on here which are full of useful info

Just a few thoughts

DD

Tiredofthis77 profile image
Tiredofthis77 in reply toDippyDame

My T4 was 13.7 and my TSH was 5.5 hence the increase. My doc suggested going to 200mcg but I couldn't do it. 150mcg was as high as I could go. I stopped taking thyroxine yesterday (I got my test results on Friday)

DippyDame profile image
DippyDame in reply toTiredofthis77

OK...in your earlier response you stated, "My TSH is now 0.34 (0.55-4.78) and T4 is sitting at 33 (10-25) (they didn't test my T3" This was after the increase.

In your latest response above you say, "My T4 was 13.7 and my TSH was 5.5, hence the increase."....

So the "lockdown experiment" ...

a) raised your FT4 to 33 from 13.7 and

b) reduced your TSH from 5.5 to 0.34

How big was that increase? From ?mcg to ?mcg

We don't have an FT3 reading so it's impossible to "join up the dots". I can only hazard a guess that your conversion is poor which might account for the high FT4

You are now taking 150mcg T4 after that latest increase - what were you taking prior to that?

You say you cannot tolerate 200mcg levo... I'm not sure that you tolerate T4 at all well!

If your GP suggested a rise from below 150mcg (your increased dose) to 200mcg it doesn't sound as if his thyroid knowledge is up to scratch!

His suggestion of an increase with a TSH of 5.5 was wrong.....for good health TSH should be around 1

That increase reduced your TSH but it sent your FT4 over range. TSH is a pituitary hormone and for monitoring g purposes is not the important reading.....FT4 and particularly FT3 are the thyroid hormones we need to test

You need to have FT3 tested that result holds the clues to what needs to be done next

Have your antibodies been tested for Hashimoto's?

Have you made changes to optimise the nutrients already mentioned, this is important for good thyroid function

You need to get "all your ducks in a row"!

Have I just read that you have now stopped taking thyroxine! If you are hypothyroid you need to be medicated for life. Thyroxine is not a drug it is the replacement of essential thyroid hormone .....you cannot afford to stop and start it.

Rant over!

DD

Tiredofthis77 profile image
Tiredofthis77 in reply toDippyDame

Hello, than you for taking the time to reply to me. It's really appreciated. I went from 100 to 125 to 150... I struggled every time I upped it. I've never been this fat or this ill in my life before. I'll look into getting my T3 tested privately since my doctor ignored requests and i'll focus on the nutrients too. I have had to stop thyroxine for a short while. My heart has been pounding and I can't sleep. I've also swelled up all over so hope stopping this for a very short while will reset me and get my T4 within range again. I honestly can't bear taking it - it makes me feel terrible. At one point I was told that I didn't need it and was taken off it for a year. I honestly felt better then - even though I was extremely hypo. Thanks for listening :)

DippyDame profile image
DippyDame in reply toTiredofthis77

Once you have full thyroid tests done post the results then members will help with a way forward.

I will never understand why thyroid patients have so much difficulty in getting correctly diagnosed and treated.

Take care

Tiredofthis77 profile image
Tiredofthis77 in reply toDippyDame

Morning, what's your thoughts on RT3? I just got my results this morning and it's off the scale

DippyDame profile image
DippyDame in reply toTiredofthis77

It's not something I've ever paid attention to because I don't think it's of much significance.

DrTania Smith writes an excellent blog on the subject, it may help...

thyroidpatients.ca/2019/11/...

HLAB35 profile image
HLAB35

It never surprises me that a poor converter has adrenal insufficiency. The two issues are linked. Improving your adrenal issues should help with conversion and vice versa. This doesn't mean taking a higher dose of Levo (yet) as excess of T4 will probably not be tolerated by someone in your current state.

Dr Myhill (please look at her website asap because she has a lot of the answers on coping with fatigue and nutrient deficiencies) always encourages patients to address adrenals first and thyroid second. Most of us tend to do the opposite, which means we're dealing with 'hyper' symptoms such as tachycardia while simultaneously not properly resolving our hypo symptoms.

I found that taking 'food' for my adrenals - vitamin C as ascorbic acid with a pinch of sea salt before meals, quality B vitamins (Igennus are good) plus a bit extra b5 (very good for worn out adrenals) and p5p (posh b6) and the minerals zinc, selenium and lots of topical and some soluble oral Magnesium with Vitamin D + k2 all added up to much better conversion, good restful sleep, generally less stressed and menopause issues being milder (especially mood). On top of this I addressed b12 and iron deficiencies with diet (liver) and b12 sublinguals. Also gave up most dairy and gluten to sort out gut issues and cleaned up my diet of sugar and processed food. Over the course of five years I have got to a state where I am probably fitter than I have ever been after having a family - which is when my thyroid really began to play up, but there's always room for improvement..

Have a look at your latest vitamin blood results and begin by addressing any deficiencies. Vitamin D is a crucial one to get sorted and requires co factors of Magnesium and K2 to work.

Tiredofthis77 profile image
Tiredofthis77 in reply toHLAB35

Thank you for your reply. Dr Myhill doesn't appear to be taking on any new patients just now, but I'll definitely take a look. thanks again

HLAB35 profile image
HLAB35 in reply toTiredofthis77

I'm aware of this. However, her website is a mine of information and she also did (not checked recently though) have links to other functional doctors (with proper MD backgrounds).

ReneeC76 profile image
ReneeC76

You more than likely have a methylation problem. Your liver needs support so it can properly store, metabolize, and release nutrients, including iron- and also your thyroxine med.

It's great to go gluten free. It's the right thing to do. But that isn't enough. You need an appropriate meal plan to maximize the nutrients your body needs right now to reach a balance and regulation. Anti inflammatory foods are also a must.

You will need to supplement with vitamins and minerals, but your meal plan will be what ultimately helps your body make a breakthrough so you can properly utilize and convert your med.

I healed my conversion issue in a month with an aggressive meal plan, gentle liver detox, and proper supplementation. If you have a methylation problem, and you very well might, you can't just start taking the supplements generally suggested for thyroid issues. Those of us with conversion issues need special protocol. If you want more info, I can help.

ReneeC76 profile image
ReneeC76

...just to add to my comments, I had adrenal issues as well and resolved them in a month while working on the conversion and methylation issues.

Michalbaner profile image
Michalbaner

Hi,

Could you give us an update?

humanbean profile image
humanbean

Ferritin 35.8 ug/L (range 44-150)

I'm taking ferrous fumarate

How much ferrous fumarate are you taking? How many pills per day and how much iron does each pill contain?

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