Advice please - at a crossroads: Hi I have just... - Thyroid UK

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Advice please - at a crossroads

ThereseK profile image

Hi I have just joined, I was diagnosed hypothyroid in 2012 and I also have IgA deficiency. I am thinking about adding T3 back in since when I was on it my mind was clearer and I was happier. I had better energy levels and stamina as well. Right now I am struggling and I feel that T3 is the way forward for me. Endo says he does not support Armour, NDT or T3, only Levo so it looks like I will be doing this without his support/approval but I am still worried about what he will say or how he will react once I tell him I am taking T3 again. Is it right for his happiness with me taking Levo only to be put above my own?

Thank you

October-2017 (100mcg Levo)

TSH 9.3 (0.2 – 4.2)

Free T4 13.1 (12 – 22)

Free T3 3.2 (3.1 – 6.8)

4 Replies

It might help you if endoc got your tsh under control, most people feel best when tsh is below 1, you could ask him why you appear to be undermedicated.

SeasideSusie profile image

Was your T3 prescribed and taken away? Why, who did this?

Do you have any results from when you were on Levo plus T3? Were you stable?

Do you have raised antibodies - confirmed Hashimoto's?

SlowDragon profile image

You are now extremely under medicated and very likely to have extremely low vitamin D, folate, ferritin and B12

See this reply to another earlier today about where TSH should be

Presumably a different endo started you on T3

There’s a battle going on between old school endos and those that realise we need T3

You will need to increase T4 in 25mcg steps to bring TSH down. Retesting after 6-8 weeks

Essential to get vitamins optimal too

But also with Hashimoto’s highly likely you need to be gluten free too

See my replies to others for more info

Also see scathing report by Patients Association- page 3 and 5-8

Email Louise at Thyroid Uk for list of recommended thyroid specialists

shaws profile image
shawsAdministrator in reply to SlowDragon

Thanks for posting the and this is an excerpt:

"We note the conclusion of PresQIPP’s review of liothyronine that there is insufficient evidence to justify its use; however, absence of evidence is not evidence of absence,and the strength and extent of the representation we have received leaves us minded to feel that further investigation is needed and that these proposals should not be implemented with respect to liothyronine. We note also that Thyroid UK has expressed concern about the impact already caused by the PresQIPP review.

Accordingly, we strongly recommend that NHS England withdraw liothyronine from the list of medicines within these proposals, and investigate the concerns raised by patients. While it is doing this, NHS England should clarify to CCGs and pharmacies that the availability of liothyronine should not be restricted, as is currently happening in someareas contrary to advice from the British Thyroid Association."

I saw GP the other day (I am buying my own T3 and he has prescribed in the past). He said they've been told they cannot now prescribe T3 and I gave him a copy of the British Thyroid Association's recommendations but I got the impression that the CCGs are more powerful than the BTA.

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