Advice please: Hi all, I would like some advice... - Thyroid UK

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Advice please

Mandy2007 profile image
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Hi all, I would like some advice on taking T3 please.

Background......been Hypo for 26 years (am now 51). Never been tested for T3, RT3, Antibodies etc through NHS.

I started getting private testing for full panel including vitamins & minerals a couple of years ago. Raised antibodies were present. T3 & FT3, FT4 and TSH always very low.

Also Vit D, Ferritin, Folate, B12 Low.

I have been supplementing for the past 7 months and all have come up, except Ferritin remains lower than I would like 72.2ug/L (11.0-307). I am happy to give all the results with reference ranges if needed. But, also I have just received my result from the DIO2 gene test which has come back positive. It confirms what my blood results have been saying, and how I have been feeling for years. I am currently on 125mcg of T4 Levo (increased over the last year and a half from 75mcg). As I now know for sure I am a poor converter, T3 is needed, and I have brought some Uni-Pharma Liothyronine Sodium (Cytomel) 25mcg tabs.

My question’s are....

1) Shall I cut in four and start with 6.25mcg

2) Do I take the T3 with my Levo, or spaced apart, if so how long apart

3) Is T3 best taken with food or empty stomach

4) When will I know if I should add in a second daily dose of T3

5) How long should I be on T3 before getting my bloods done to test for all my Thyroid levels

6) What side effects would I get if it a) wasn’t agreeing with me, or b) I’m on too much.

As always....your thoughts and feedback will be gratefully received. Many thanks Mandy

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SlowDragon profile image
SlowDragonAdministrator

It would be helpful to have your most recent results and ranges for

TSH

FT4

FT3

Depending on where FT4 level is, depends on wether Levothyroxine dose needs reducing

Usually people start on 1/4 tablet (6.25mcg) T3 twice daily......roughly 8-12 hours apart

T3 is apparently not as fussy about food, but personally I always take it on empty stomach and nothing apart from water for roughly an hour after

Uni Pharma is easy to cut with sharp craft scalpel

You could even start on 1/8th tablet twice day for first few days

Stick on just 1/4 tablet twice day for 6-8 weeks and then get bloods retested

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 dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

cazmania7 profile image
cazmania7 in reply to SlowDragon

What would we do without you slowdragon 😀

Mandy2007 profile image
Mandy2007

Hi thank you so much for your response and guidance. It all makes sense and I feel ready to make the move. I am sooooooo exhausted, not physically but cognitively, I’m hoping T3 will give me some “brain energy” back. Here are my latest results taken in August 2019.

TSH 0.09 (0.30-4.80)

FT4 13.3 (7.7-20.6)

FT3 4.7 (4.2-6.9)

Many thanks Mandy

greygoose profile image
greygoose in reply to Mandy2007

Not surprised levo isn't 'working' for you. You're very under-medicated - or you have an absorption problem. Your FT4 is only 44.41% through the range. Should be much higher than that. So, difficult to tell exactly how well you convert at this point. Your FT3 is 18.52% through the range. Still, if you want to take T3, this is how you go about it:

1) Shall I cut in four and start with 6.25mcg

Yes, start with 6.25 mcg T3. But, I wouldn't reduce your levo, if I were you. It's too low as it is, and taking T3 will lower it even further.

2) Do I take the T3 with my Levo, or spaced apart, if so how long apart

Yes can do exactly as you wish. There are no rules. Maybe start off by taking it at the same time as levo, for convenience. Then perhaps experiment a bit, to see what feels best for you.

3) Is T3 best taken with food or empty stomach

I would say, to be on the safe-side, for maximum absorption, always take all thyroid hormone away from food, other medication and supplements. Just like you would levo.

4) When will I know if I should add in a second daily dose of T3

You can increase by 6.25 mcg every two weeks until you feel well.

5) How long should I be on T3 before getting my bloods done to test for all my Thyroid levels

Continue increasing by 6.25 mcg every two weeks until you get to 25 mcg. Then, hold for six weeks and retest.

6) What side effects would I get if it a) wasn’t agreeing with me, or b) I’m on too much.

Side-effects/symptoms are a very personal thing, and different for everyone. I think it's a bad idea psychologically to go into taking T3 with the idea at the back of your heat that it might not agree with you. Tell yourself it will agree with you, and you're going to get your health back.

Not likely you would be taking too much in the beginning, not before you get to 25 mcg. And, then you would have your labs to guide you. But, symptoms would be hyper-like symptoms: racing heart, loose bowels, etc.

Good luck. :)

cazmania7 profile image
cazmania7 in reply to greygoose

What would we do without you grey 😀

greygoose profile image
greygoose in reply to cazmania7

Oh, there's plenty more where I come from! lol

Sinead74 profile image
Sinead74 in reply to greygoose

Hi there

My endo would think those bloods were good given the age of the patient the TSH does not need to be so low any lower then 2 at her age a TSH under 2 will open her up to osto problems heart problems etc. and given that her T3 is in the higher range its ok for the the Free T4 will be lower. Also if she takes more T3 her Free T4 Will drop even further. I have been her when taken more T3 your Free T4 drops. So her bloods will look worse. ??? I am so confused over this whole thyroid issue I discussed this with my Endo only yesterday because my NDT thyroid have stopped working for the 5th time I have been on everything T4, T3, Armour, Tirosint both liquid form and capsule, WP thyroid, TR Tman Thyroid, Nature Thyroid and NP Acella which have now changed. My bloods taken a few weeks ago while taken 2 X 65mcgs of NP thyroid and 16.25mcgs every second day: TSH 3.53. FreeT4 9.0. Free T3 3.3. My endo says these are the best bloods that I have had in 3 years. Im 2 stone heavier than normal even though I work out etc etc. I told her my tsh needs to be between 1 and 2 as I need to loose the weight she mentioned at different stages in our lives as in the older we get a TSH under 2 - 3 depending on the age can actually be dangerous. I am now going to try liquid tirosint and T3 together to see if I can tolerate it as I have always had a problem increasing my medication as in awful side effects. I was on liquid eltroxin and t3 at one stage and was climbing the walls with side effects it was terrible so needless to say Im not looking forward to trying this mix. But I wont stop until I find the right medication. I was doing fantastic on the Nature thyroid back in 2018 and then the just disappeared. Any advise would be very much appreciated.. sorry for harping on and good luck in your journey and dont stop until you feel happy.......

greygoose profile image
greygoose in reply to Sinead74

My endo would think those bloods were good given the age of the patient the TSH does not need to be so low any lower then 2 at her age a TSH under 2 will open her up to osto problems heart problems etc.

I'm sorry, but that's complete rubbish. When you are hypo - as the OP is - your age has nothing to do with the TSH. The TSH follows the levels of the thyroid hormones. And, if you need a higher dose to make you well, then the TSH is going to be lower. And, that's the way it has to be. Whatever age she is, she needs the thyroid hormones at the right level for her and one should not dose by the TSH.

It's long been proved that the TSH has nothing to do with hearts and bones. To have good bones and a healthy heart you need good levels of thyroid hormones. You're far more likely to have heart problems and osteoporosis if you thyroid hormones are too low.

and given that her T3 is in the higher range its ok for the the Free T4 will be lower.

But her T3 is not in the 'higher range'. It's only 18.52% through the range. Well below mid-range.

Also if she takes more T3 her Free T4 Will drop even further. I have been her when taken more T3 your Free T4 drops.

True, but that's OK. She can always increase the levo at a later date.

So her bloods will look worse. ???

Doesn't matter much what her labs look like if she feels well. You'd probably think my labs were terrible: zero TSH, zero FT4, top of the range FT3. I take T3 only. That's what I need to do to feel well. We all have different needs, there is no one-size-fits all. The OP is wanting to experiment to find what makes her well, so good for her. You cannot force people into one single endocrinological mould and think they're all going to be well, because a lot of them won't be. Oh, and I'm nearly 75, by the way, and god help the doctor that tells me my TSH needs to be 2!

My bloods taken a few weeks ago while taken 2 X 65mcgs of NP thyroid and 16.25mcgs every second day: TSH 3.53. FreeT4 9.0. Free T3 3.3.

You haven't given ranges - which is essential because they vary from lab to lab - but your TSH is still saying 'hypo'. It's too high for any hypo, whatever their age. And, taking a guess, your Frees are too low. You are under-medicated.

Your endo has no idea how to dose. You cannot dose NDT like that because of the T3. When taking T3, either on its own or in NDT, it needs to be a steady, daily dose. You cannot alternate with it like you can with levo. So, zero marks there for your endo, for a start. He really, really knows nothing about thyroid, I'm afraid. I'm not surprised you're confused.

Im 2 stone heavier than normal even though I work out etc etc.

Not surprising, you're still hypo. And, you probably shouldn't be working out so much. It's not advisable with a low FT3. It won't help you lose weight, and will probably make you put more on because the exercise will be making you more hypo.

Plus you are taking your NDT in a way that will impair its effectiveness.

she mentioned at different stages in our lives as in the older we get a TSH under 2 - 3 depending on the age can actually be dangerous.

Quite how true this is, I'm not sure. But, in any case, it only applies to euthyroid people. NOT to hypos. If you are hypo, your body works in an entirely different way. She should not - no doctor should - compare hypos with euthyroid people. That's how they manage to keep their patients sick.

But, even if you're euthyroid, it's complete rubbish to say that a TSH under can be dangerous. Your endo is living in the stone age and should really go back to med school for a refresher course! She is going to keep you sick for the rest of your life, I'm afraid, because she is just too ignorant. Is she a diabetes specialist?

I have always had a problem increasing my medication as in awful side effects.

Are your nutrients optimal? Have you had your vit D, vit B12, folate and ferritin tested recently?

My advice to you would be to either find a different endo that actually knows something about thyroid and doesn't take her information from 'The Big Book of Endocrinological Myths and Other Bedtime Stories'. Or, go it alone. You couldn't do worse than her, let's face it! :)

in reply to greygoose

I can only agree with everything Greygoose says, especially about the TSH and how useless it is to determine if you are on the right dose for your needs.

During the decade I spent on T4 only, I never felt even close to normal unless my TSH was below range (around 0.05). With a TSH where my doctor at the time wanted it (1.5-2), I'd feel like a zombie. I never felt optimally treated on T4 BTW, but a so called normal or in range TSH was far worse for me than a suppressed one.

For a few years, to keep my doctor calm, I used to lower my T4 for up to eight weeks before having labs. At first, that worked. My TSH rose to somewhere between 1 and 2 if I lowered my dose by 50 mcg. I felt like h--- during that time, but I could not stand the doctor telling me how dangerous it was to have a below range TSH.

Then, one day, that stopped working. I would go from the 200 mcg daily that kept my TSH suppressed to 150 mcg where it used to be well in range, only to find out my TSH would remain suppressed. So, a lot of pain (feeling even more hypo) and absolutely no gain.

I have since learned that a TSH that has been suppressed for an extended period of time may never rise even if you lower your meds, so trying to dose by the TSH is a bad idea for that reason as well.

My TSH has been suppressed for around 17 years by now so according to most doctors I should be long gone...!

Sinead74 profile image
Sinead74 in reply to greygoose

Hey Greygoose

thanks for your feedback and sorry for the very late reply there is a reason. Since our last correspondence I have been on the liquid Tirosint and T3 only to discover that I can not take t4 meds the more I take the worse I get. I noticed a difference in the T3 makes me feel a whole lot better but I have to slowly increase. Long story short I stopped the tirosint a few days ago as the scales where still climbing and I had very bad brain fog headaches blurred vision,constipation etc. I am going to type my blood results after taking 50ml of tirosint and 20mcgs of T3 for 8 weeks. I would love any input on these.

TSH 7.03 (range 0.27 - 7.20

Free T4 9.8 (range 12.0 - 22.0)

Free T3 5 (range 3.1 - 6.8)

Ferritin 33 (range 13 - 150)

ATPO Anti Thyroid Peroxidase 13 (range 0 -34)

FE Serum Iron 19.2 (range 5.8 - 34.5)

TIBC 61.65 (range44.80 - 71.60)

TSAT % Transferrin Satn 31.1 (no range a guide to interpretation % Transferrin saturation >45% (fasting) may be consistent with iron overload.

I am now on 30mcg of T3 and feeling good so far. I am also going to see a different doctor next week who has a total different approach then my endo as he looks at the bigger picture as in hormones and vitamin deficiencies as I am 45 I am afraid that my hormones are also adding to my ongoing thyroid issues.

To answer your previous question my Endo is also a diabetes specialist.

Do you think that this is proof of the T4 not working for me, also do you think that its ok for me to exercise now as my t3 is in the higher bracket. Can I ask you how long it took for you to be optimal on the T3 as I need to lose the weight asap. would you be willing to share your thyroid blood results for me to see and get an insight on how they would look compared to someone on T4 meds.

Thanks everyone I really appreciate the feedback .

s

greygoose profile image
greygoose in reply to Sinead74

Well, you're probably only going to get feed-back from me, because this thread is two months old, so not many people are going to see it. Ideally, you should write your own post so that it will go to the head of the queue and lots of people will see it - and the OP of this thread will not be bothered by notices that someone has replied to her thread, but it has nothing to do with her. :)

Your TSH is incredibly high for someone take 50 mcg levo and 20 mcg T3. Are you always taking your hormone on an empty stomach, etc.? Your FT4 is well under-range and your FT3 not even mid-range. You're still very hypo on that dose.

And, your ferritin is very low but I can't comment on that because I know very little about iron. This is why you need to post your own thread.

To answer your previous question my Endo is also a diabetes specialist.

Correction: your previous endo was ONLY a diabetes specialist, she knew zero about thyroid.

Do you think that this is proof of the T4 not working for me

What? The fact that your FT4 was so low? No, it was proof that you were taking a very small dose and also taking T3 which lowers FT4 results.

What do you mean by 'work', anyway? It had to be doing something, but you weren't taking enough of it and your body couldn't convert it very well. Neither of those things is the fault of the levo.

you think that its ok for me to exercise now as my t3 is in the higher bracket

Impossible to say without further labs. You cannot just guess at your FT3 level based on your previous results, now that you are taking T3 only. You need to stay on 30 mcg for six weeks and then get retested.

Can I ask you how long it took for you to be optimal on the T3 as I need to lose the weight asap.

You can ask, but I can't answer. I don't know. Things were very complicated at that time because I was very ill with something other than thyroid.

would you be willing to share your thyroid blood results for me to see and get an insight on how they would look compared to someone on T4 meds.

I haven't had bloods for six years. And, I don't know where the last results are - somewhere in my archives. But, as I remember it, on 75 mcg T3, my TSH was still quite high. Can't remember the FT3, but I don't think it was top of the range. But, that's just me.

Normally, someone taking T3 only would probably have a suppressed TSH on quite a low dose of T3. And, if they're not taking any T4, their FT4 would be below range. Their FT3 should depend on how much T3 they're taking. But, everyone is different, so you're going to get many variations on that particular theme. :)

Sinead74 profile image
Sinead74 in reply to greygoose

Thanks Greygoose,

I am not stopping here as I mentioned I am going to see another Doctor this week to look at hormones cortisol etc etc. I am taking all meds on an empty stomach with selenium. I know by looking back at all of my bloods and reactions to T4 over the years that I CAN NOT take synthetic T4 and will never take it again. So on wards and hopefully upwards..

greygoose profile image
greygoose in reply to Sinead74

You mean you take selenium at the same time as your thyroid hormone? That's probably where you're going wrong, then. All forms of thyroid hormone need to be taken strictly on their own.

But, I still say you should post your own thread to get more opinions.

SlowDragon profile image
SlowDragonAdministrator in reply to Mandy2007

So you don't need to reduce your Levothyroxine. FT4 is very low

You could try an increase in Levothyroxine.....but I suspect GP will only be looking at low TSH and refuse to increase

Ideally FT4 should be somewhere around 60-75% through range as minimum

Only add T3 or increase Levothyroxine.

Don't add both

cazmania7 profile image
cazmania7

Good luck on your mission Mandy

essdobs profile image
essdobs

The only thing I would add, is to split your T3 so you take it twice per day, morning and afternoon, otherwise I certainly “crash”, not sure if it’s the same for everyone though...

greygoose profile image
greygoose in reply to essdobs

It's not the same for everyone, no. :)

Mandy2007 profile image
Mandy2007

Thank you all so much for your input, as caxmania7 said.....what would we do without you? seriously....this forum/you guys are a lifeline! I will take all your advice 👍 grey goose you are so right to say not to think negative but to be positive that it will work and get me where I need to be 😁.......onwards...

Mamapea1 profile image
Mamapea1 in reply to Mandy2007

I think T3 is exactly what you need! You have had great advice from GG and SD and I would say just go by how you feel...we are all different, and other peoples experiences are not necessarily going to be yours. Only time and trial will tell. Seems to me you have been very under medicated on T4 anyway until fairly recently, and combined with being a poor converter, it's not surprising that you feel below par.

I would say make sure your Vits and minerals remain optimal, especially Vit D (winter) and it's co factors and the B vitamins, as they can also help with brain function...I personally need my B12 to remain high. Mental fatigue is a terrible drain, and affects all aspects of life. I used Better You Iron Spray to increase my stubborn iron levels ~ it was all I found to work, as I had very poor absorption. Good luck ~ I hope you will soon be feeling better after all this time🍀

Mandy2007 profile image
Mandy2007 in reply to Mamapea1

Thank you I appreciate your words 👍

BeachHut profile image
BeachHut

Hi Mandy, just a word of caution, going down the T3 route has brought me its own complications such as worry of continuity of T3 supply, rigid adherence to multiple daily dosing, and what happens if you need medical assistance for unrelated issues. I have been diagnosed Hypo for 21 years, the last 2 years self sourcing T3 but under Endo supervision. If your other full blood tests show similar results for T4 and T3 then you are under medicated with Levo because your doctor is only looking at TSH. I agree with Greygoose that it is difficult to tell how well you convert. The numerical tool SPINA Thy (see Jnetti healthunlocked.com/thyroiduk/posts/141597556/how-to-confuse-your-endo ) gives a conversion rate of 32 (poor converters are classed as <23), but this is at your low FT4 level. I would give increasing Levo a try to see if you can get your T3 level up when your T4 is above 75% of range. However, you may find that at higher T4 levels the DIO2 gene starts limiting conversion in which case taking T3 is the option. I found that for me I could only tolerate a low dose T4 once I started on T3 . I have a DIO2, TRHR, and TSHR SNPs, but suspect my DIO3 is not normal

These comments are only based on my own experiences of being Hypothyroid and we are all different.

Lois71 profile image
Lois71

I just started with T3 since last November 6th, I am a poor converter too. Greygoose advised me to lower 25 mcg of levo since the F4 was high and start with 1/4 mcg of T3 a day, I can say so far that I have noticed favorable changes, less mental fog, little more energy, my neck and stomach pain decreased,

The litmus test is right now that I am in my premenstrual syndrome and I have not suffered it as much as in previous years, although I still have had headaches and nervousness I feel less swollen from fluid retention which for me is a lot of gain.

It is worth mentioning that I am using natural progesterone cream too.

I hope to leave the sleeping pills soon.

I am taking B12 and folic acid and I am waiting for a delivering of methylcobalamin combined with methylfolate.

I will inform you of my progress and positive changes.

Mandy2007 profile image
Mandy2007 in reply to Lois71

Yes it would be great to hear how things go for you. My fatigue isn’t physical but brain. I can’t say I’m not nervous to take the step to start T3, but I know if I don’t my life will remain under par. I’ve got too much to do to stay like this 😊 thanks for sharing your experience with T3. Mandy

Mandy2007 profile image
Mandy2007 in reply to Lois71

Hi there, just reading through these threads again and was wondering how you’ve been getting on? Mandy

Lois71 profile image
Lois71 in reply to Mandy2007

Hello Mandy, an apology, I had not responded because I had a series of symptoms that have coincided with the taking of the T3 (I do not say they are due to that but I am in the process of ruling it out)

Since I had thyroid surgery, I had neck discomfort, I had X-rays and I have rectified cervicals, but soon after I started with T3 this increased to the degree that exhausts me, I also have the theory that is due to the antidepressant (it can cause back pain), but I had already taken it for almost two months and had taken it before for 8 years and it never caused me that discomfort.

What is that the mental fog is gone and also the tachycardia.

I'm sorry I can't help you a lot because I have a lot of variables, but most of the ladies in this forum have been helped by taking T3.

I may have to return only to the levo to rule out that it is due to T3, if the symptoms persist I would take it again and look for another possible cause.

Maybe the brand I take is not the one for me but in my country it is the only one they sell without levo.

I wish you the best and don't be afraid to take it, on this site they can guide you they are very friendly. Either way I will continue talking about what happens with me in the future.

I wish you the best.

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