POLL - Start T3 supplementation, start NDT self... - Thyroid UK

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POLL - Start T3 supplementation, start NDT self medication or wait till referal?


Hi I am having a dilema and wanted to use the comminity here for advice on what I should do. (see previous posts ("Consistently high tsh results" and "Consistently high tsh results gp update" ) for background.

Options I have:

1. Start supplementing T3 bought online and self medicating.

Pro: something that would be relatively easy to start and use symptoms to guide me to the correct dose. also well documented in threads here to follow.

Con: could deter endo to help me if I have decided to self medicate - something I can't maintain forever.

2. Start NDT bought online and self medicating, and reducing T4.

Pro: Seems to be the concensus that this might be the best option, also some of the vitimins are supplemented with the extract as well as T3 and T4.

Con: working out very expensive and probably doing it all with support group guidence only rather than GP so no blood testing till levels are right, unless I pay.

3. Start additional supplements of folate, ferritin, B12 and selenium

Pro: could help the T4 to T3 conversion assuming that deficiency in 1 or all of these are the result of my continuing symptoms.

Con: could muddy the waters if levels haven't settled by the time I have to see endo. also working out very expensive and probably doing it all blind as I don't have the support of GP for repeat monthly testing till levels are right.

4. Wait until I eventually see addenbrookes endo.

Pro: Endo will have full clear picture.

Con: Fell really terrible till I get to see him and potentially not even resolved in first visit if he doesn't agree immediately that something needs to be done and treat me holistically rather than refer back to gp to treat individual symptoms (this has been my experience in the past with other endos)

16 Replies

I've had to make the same choice this week after years on T4 and even with suppressed TSH still symptomatic and feeling dreadful. I tried Nutri Thyroid as prescribed by Dr P but felt no benefit and now my T4 is low and TSH high ( doc wouldn't test T3) GP will not prescribe T3 but I got some myself. Was at Rheumatologist yesterday ( sent to him re fibromyalgia symptoms which I believe are hypo symptoms) told him about my T3 purchase which I would start if he couldn't prescribe it. He said he would not prescribe it but if I took the stuff I have he will do bloods in 6 weeks and if it is effective for me refer me to an endo who he thinks will prescribe it. So that's the long way of saying I started t3 two days ago, small dose split in two.....not felt any hyper symptoms but it's early days. I have lost the faith that any of these specialists can improve my thyroid status any better than I can apart from writing the prescriptions and ordering the blood tests. Best wishes

trucall in reply to imagisal

Where did you get it from? would you recommend?

Have you had a free t3 and total t3?from what I know that's how to gague the t4 to t3 conversion rate. I'm facing the same problem as you atm.i will be asking for full spectrum tests a fellow member sent me a template you can look at if u like using the uk thyroids own legislation..let me know of you'd like it and stay in touch! Btw what pay off the uk? In under doncaster and basset law nhs.

Gilly x

greygoose in reply to gillyhh

A better way to tell if you're converting is to test your FT4 and your FT3. If the FT4 is much higher in range than the FT3, then you aren't converting. That way, you also get to know what your FT4 is. :)

trucall in reply to greygoose

yep i think that is the problem see results in updated post for consistently high TSH results gp update. I'm sure it's not converting what is not clear is whether it is enzyme, receptor or supplement related.

Which option; 1,2,3 & 4 would you recommend?

greygoose in reply to trucall

No, your TSH is consistantly low, not high. It's too low considering your FT4 and FT3. But the net result is, you're not converting. And given how low your ferritin, iron and B12 are, I would say it could very well be due to low nutrients. As I said before. I Don't know what you mean about enzyme and receptor.

Question time!

1. "Con: could deter endo to help me if I have decided to self medicate - something I can't maintain forever."

Why can you not self-medicate forever?

2. "Seems to be the concensus that this might be the best option, also some of the vitimins are supplemented with the extract as well as T3 and T4."

What vitamins? There are no vitamins in NDT.

The consensus is not that NDT is the best. It's the best for those that it suits - it doesn't suit everybody. And as you have Hashi's, it might very well not suit you. The only way to know is try it and see.

3. "Con: could muddy the waters if levels haven't settled by the time I have to see endo." Why?

Whatever you do, you have got to get those levels up. Because nutrients that low are going to cause problems in and of themselves. Although there's no guarantee that supplementing these is going to make you convert better, it's going to make you feel better all round. I Don't see the problem there.

4. "Wait until I eventually see addenbrookes endo." When are you seeing him?

"Con: Fell really terrible till I get to see him and potentially not even resolved in first visit..." But you probably will feel better if you start addressing your nutritional deficiencies. It isn't just about hormones. Add some magnesium and zinc to your D3. Add a B complex to your B12. Add vit C to your iron. You should be taking lots of vit C, anyway, it's good for everything, and your addrenals need it.

Are you getting enough calories, fat and salt? The adrenals need all those too. And you need calories to convert.

So, my conclusion? Eat properly, take suppléments and wait until you've seen the endo - seeing as you've got the appointment - and see what he says. He might be helpful. But if he's not, then you can start wondering about whether to buy NDT or T3 (T3's cheaper!).

trucall in reply to greygoose

My TSH was constanly high until I changed doctors hence 2 posts with update. I have tried to maintain consistency in titles to show progression - not ideal I know but at the time of writing first post the title was accurate. only now is it not - I see it would not make sense unless you have followed my thread from the start so it is good that you are clarifying for anybody "dipping" into post, after all I only have the latest 2 blood tests recorded here and only report because this has changed. I will ask clutter if there is a way to link posts so other people don't misunderstand - Cheers for highlighting! :).

The questions

Enzyme (Iodothyronine deiodinases type 2 in this case) - the protein responsible for converting T4 to T3 in cells, by removing an iodine molecule.

Receptor - hormones are not passively taken up into cells from your circulation they require proteins called receptors on the plasma membrane for successful entry into cells. T3 and T4 are transported by Hormone receptors and there are a few names ( that vary by tissue they are expressed on and what cofactors they use).

What vitamins? There are no vitamins in NDT.

Sorry wrong term. As I understand it NDT is essentially pwdered pig thyroid so whatever was stored or present in the thyroid colloid or follicular cell at time of preperation will be in the grain.

Are you getting enough calories, fat and salt?

For the past year I have been on a recommended diet - PM me if you want details. I described to gp and he didn't see any issues.

Thanks so much for your advice i have printed out and will plan a new regimen. I may Pm you when done if unsure as you sound like you know what you're talking about.

greygoose in reply to trucall

OK, yes, I see your point about the title. lol I was a little confused.

I read most posts on here but my memory is so bad, I forget most of them almost instantly, even when I reply.

So, have you heard of many people having problems with Iodothyronine deiodinase enzymes and receptors? I can't say I have. How would you test for that?

You're right about the NDT containing anything that was in the thyroid at the time of harvesting. And that could be one reason why NDT might not be right for someone with Hashi's. And Don't forget, NDT also contains T4 which has to be converted. So, if you're a bad converter, it might not suit you.

Well, you doctor would see any issues with your diet, would he. He knows nothing about nutrition, especially not for hypos. But, by the sound of it, you aren't getting the necessary nutrients. Who recommened it?

As to me knowing what I'm talking about, there are some things I know - but could be proved wrong because knowledge is continually changing - and a hell of a lot more I know nothing about! But I'm Learning all the time. So, hopefully, one day I'll know a bit more. :)

trucall in reply to greygoose

"So, have you heard of many people having problems with Iodothyronine deiodinase enzymes and receptors? I can't say I have. How would you test for that? "

Yes read a few research articles, it has been inferred as reason in some cases but not as a routine test. I would think the only way would be genetic testing looking for mutations in the genes that encode these proteins. (that is very expensive and not something I would ever expect to become routine) but in therory any protein can be prone to disfunction (or even activtion) by mutations caused by outr genetic makeup or environmental factors so yes it is possible and probable, it's just not common but that could be due to it not being looked for as so many patients are just dismissed with T4 'script and a pat on the head. if you like scientific papers then I insert link for your interest:


faith63 in reply to trucall

If you don't convert due to genetics, they can't do anything about it anyway. T3 would be the way to go if you don't convert.

greygoose in reply to faith63

Very true.

Trucall, When is your Addenbrooke's appointment?

Your last results TSH was below range but not suppressed, your FT4 was mid range and your FT3 low. That indicates you aren't converting well and might benefit from the addition of some T3 to Levothyroxine or NDT. You will almost certainly have to self fund NDT but you might get T3 prescribed on the NHS. Self funding T3 is not expensive if you require a small amount to add to Levothyroxine and will be considerably less expensive than NDT.

No reason to delay supplementing low ferritin, vitD and B12. It won't muddy any investigations the endo does but it will improve your wellbeing and will aid absorption of Levothyroxine and conversion of T4 to T3.

Take iron tablets with 500mg-1,000mg vitamin C to aid absorption and minimise constipation. You need 5,000iu daily vit D3 softgel capsules or spray to get level to around 100 in the replete range 75-200. Take iron and vitamin D 4 hours away from Levothyroxine and retest ferritin and vitD 6 months after you start supplementing. Both take months to improve so more frequent testing isn't necessary.

1,000mcg methylcobalamin sublingual lozenges, spray or patches. There's no point in testing B12 when you are supplementing as levels will usually be high in range. Take a B Complex vitamin which keeps the other B vits balanced and most contain the RDA folic acid. Selenium supports the thyroid, 200mcg is the RDA.

Supplements don't have to be expensive. You cut your cloth, so to speak. Supermarket vitC and B complex is fine and Amazon or health food shops are good sources for B12 and vitD, Ferrous Fumarate or other types of iron and selenium. If you use Amazon please use the affiliate link which earns TUK a small commission thyroiduk.org.uk/tuk/go_sho...

trucall in reply to Clutter

Oh thanks so much you have just bolstered my energy to just do it ! - Thanks

I'm still waiting for referral from GP - letter still not sent and looking at clinic waiting list told me average time to be seen in outpatient clininc for endo is 15 weeks so my expectation is mid- late September....

Clutter in reply to trucall

Trucall, You have time to see whether adding T3 to Levothyroxine improves your symptoms but it doesn't guarantee your endo will agree to prescribe it.

Hi Clutter, how come you can recommend Amazon but tell me off when I did?

Clutter in reply to Treepie

Treepie, because supplements are not prescription only medications. TUK has an affiliate link with Amazon and is happy for people to link to it for non-prescription purchases.


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