Thinking of self medicating with T3 again - Thyroid UK

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Thinking of self medicating with T3 again

Sue813
Sue813
9 Replies

I’m hypothyroid and have been taking Levothyroxine for 10years. A few years ago my T4 went above range so Endo reduced Levo and added T3. I didn’t get on well with the T3 and stopped it. A year later I decided to try adding it again myself so sourced my own supply and took 5mcg daily with 100mcg of Levothyroxine. Continued on this combo for next 18months and have felt okay with T4 and T3 blood results within range but GP referred me to different Endo a year ago as TSH 0.02. (It has been this for years, no hyper symptoms) Endo insisted I stop taking T3 immediately. I have to go back in 2 weeks and my blood results (private) are now TSH 0.225 (0.27 - 4.2), T4 15.7 (12 -22) T3 3.67 (3.1 - 6.8). My hypo symptoms have all returned so I’m thinking of telling Endo I’m going to start T3 again without his consent even though TSH still not in range. Any advice would be really appreciated.

9 Replies
oldestnewest
m7-cola

I would trust your instinct. I don’t like the sound of the advice from your most recent endo. (I had a similar experience with an endo...after which I had a meteoric rise in TSH!)..

Your symptoms had been controlled with a very small amount of t3 but since stopping it they’ve returned. This is important data.

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SlowDragon
SlowDragonAdministrator

You need to test vitamin D, folate, ferritin and B12 too

Very common for these to be too low, especially when T3 is withdrawn

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

TSH is completely inadequate way of measuring treatment once on Levothyroxine, and especially when T3 added

Your results show you are now under medicated

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Sue813
Sue813
in reply to SlowDragon

Thank you for your reply. Vitamin D, ferritin and b12 all okay 5 months ago. I do have Hashimoto's. .

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SlowDragon
SlowDragonAdministrator
in reply to Sue813

Would recommend you get these vitamins retested before starting T3

As you have Hashimoto's are you on strictly gluten free diet?

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

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Sue813
Sue813
in reply to SlowDragon

Have been reserved for coeliac and results negative but it might be worth me trying gluten free diet to see if this helps

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SlowDragon
SlowDragonAdministrator
in reply to Sue813

Many of us test negative for coeliac

But are gluten intolerant, especially on just Levothyroxine as it doesn't resolve all gut symptoms

You don't need any obvious gut issues yet can still be gluten intolerant

I was astonished at the improvement. More on my profile

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MaisieGray

The Endo is your advisor, no more, no less, and you don't have to follow his orders, indeed, it's not his role to give you orders, especially as it wasn't he who was prescribing your T3 in any case. And you certainly don't need his consent to start taking it again if that's what it takes for you to feel better. When my own T3 was withdrawn on the instruction of the CCG, my FT3 fell to 3.2 against the same ref range as yours, and my Endo said he wasn't surprised I felt ill, and recommended my T3 (20 mcg) be reinstated; the point being is that your Endo is not de facto correct in what he's said or done to you (which is why second opinions were invented, I guess) and in similar circumstances another Endo has taken an entirely opposing view. So perhaps the question is, what are you benefiting from continuing to see this man; but in any case you have jumped through the GP's hoop by seeing that Endo, and you've jumped through the Endo's hoop by stopping your T3; and the net result of both is that you're worse off. If it were me, I would keep the appointment in order to point out how very poor is the FT3 level now, as a result, and how poor is the FT4 level - not even midway in range - therefore an increase in Levo 'might' make symptoms abate but will not in any case, raise the TSH. I'd point out that I had all the evidence I need to show that my health is better with the addition of T3, and then I'd never see him again. The only advantage of seeing a poor Endo is to access T3 through the RMOC guidelines, and if you aren't getting that, what's the point of putting yourself through the misery of seeing one who takes it away.

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Sue813
Sue813
in reply to MaisieGray

Thank you MaisieGray for your thoughts. I totally agree and you’ve helped me be more determined in my decision.

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SlowDragon
SlowDragonAdministrator
in reply to Sue813

A ccg is not entitled to ignore national guidelines

If an NHS endocrinologist says you have clinical need of T3 you should be prescribed

Some endocrinologists may not prepared to stand up against CCG

Find one who will, if this one won't support you

British Thyroid Association statement

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 2018

drive.google.com/file/d/1c2...

Helpful post

healthunlocked.com/thyroidu...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

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