GP reducing Levo dose based on blood tests only. Need evidence/papers to show under dosing is potentially harmful too

[Jools21]

Update March 2024:

I finally saw a Prof of Endocrinology in December 2023 , who determined I did need Liothyronine. A shared care agreement was arranged with my GP and finally last week I started on a trial of Liothyronine.

Thank you to everybody who responded and all information supplied. Knowledge and persistence has finally worked.

Original post:

I have been in battle with GP for last few years over levothyroxine dose. They just lower & are trying to reduce dose again based solely on blood results and do not take into consideration symptoms.

The issue is my TSH has been suppressed since 2012. Two thyroid drs have told me this is to be expected so ignore & look at T4 and T3 results & symptoms. (I am very aware that my normal doesn't fit into their boxes & hence the issues) I've repeatedly been told of the potential harms of overdosing, Im sick of hearing it, when they do not listen to their patient.

Previous GP's have been absolutely fine about not fitting into their ranges, but sadly not the current GP. The pressure from GP has intensified significantly in the last year. I can take a very good guess as to the why.

I have been trying to find evidence/studies /anything which indicates under treating can also be detrimental too. As then drs might take more notice of clear evidence and pay some attention to the hypo symptoms.

I know i am a bad converter of T4 to T3 (as determined by two different private thyroid drs) hence why if I am only using levothyroxine, then a high dose is needed.

i function much better on T4/T3 combinations. Have tried many options over last 13 years & know what works for me. If I could afford totally private I would take this route & dump the NHS & all the hassle & stress it is causing me.

The nhs drs & an endocrinologist say, there is no evidence that T3 works & there is evidence that says it doesn't work. They are actively taking people off T3. It would be good to find clear evidence that T3 is beneficial to some people.

Any information would be appreciated. Thank you

[Jaydee1507 Administrator]

Do you have it in writing from the 2 thyroid doctors that TSH below range is OK and to go by FT4 & FT3? That would be good evidence alone for your GP.

Otherwise the NICE guidelines are always a good quote.

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Good thread to read:

healthunlocked.com/thyroidu...

[Jools21 in reply to Jaydee1507]

No I have nothing in writing sadly saying this. I doubt the dr who is also NHS with own private practise would put they head above the parapet to be shot at. I do not think any GP who was ok with my results & clinical observations, made many notes. Im currently trying to get hold of medical notes from old Gp practices in the hope there might be something noted.

I was initially treated with levothyroxine based on clinical symptoms, low T4 but TSH was under 5. So I was very lucky to have an old school GP who understood thyroid symptoms and treated.

Thank you for nice guidance. I will quote these and hope GP practice listens. I intend refusing to consent to lower dose & hope with some info and as much knowledge as possible I can at least delay and hopefully stop a dose reduction. I already feel awlful from previous dose reduction. I cannot live like this.

[tattybogle]

exactly how low is your TSH ?

if it's 0.04 or over, some of these will be useful : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

this may also be useful : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

[Jools21 in reply to tattybogle]

My TSH is usually 0.03 & has been in most tests for 10 years, with the occasionally 0.01

Thank you so much for links. Much appreciated

[crimple]

Jools 21 I also suffered from treatment by TSH ten years ago. Thanks to this site I learned a lot and eventually got some T3 to add to my T4. Then a locum who reviewed my meds was not happy with my suppressed TSH, my T4 and T3 were both well in range. I told her I was prepared to sign a disclaimer regarding heart issues and osteoporosis threats.

My heart palps had stopped when I got the T3 and I had a Dexa scan as part of research.

They now disregard my TSH. Good luck fighting your corner.

[serenfach]

Ask what other hormone the body produces that it does not need. They cannot answer that obviously. You are bad at making T3 from T4 (same here!), so need the T3.

If you had a dodgy pancreas and did not produce enough insulin, would they say you dont need treatment? Drives me mad that we are supposed to fit their little boxes when we are all individuals.