Advice regarding results please

[Hammy1955]

Hello everyone.

I have been reading for a while but new to posting so please bear with me if i ramble, head is very foggy!

I would be grateful if anyone could advise on my latest results. In January my levothyroxine (Wockhardt) was reduced from 75mg as the locum GP said i was hyperthyroid with a TSH of (0.20) Range (0.35 - 4.94). T4 13.7 (no range avail). This was despite me arguing i actually had the opposite symptoms, weight gain, feeling cold etc. He wouldn't listen and prescription was reduced as he said he would be breaking his Hippocratic oath and harming me by over prescribing. I asked for retest in 6 weeks which came back as TSH 0.54, he rather smugly said this justified his lowering of dose despite my arguing i didn't feel well at all. My original GP who has sadly retired would always ask how i felt and would leave dosage as it was if i felt ok.

I recently had a private test done with Monitor My Health, results were:

T4 12.1 (12 - 22)

TSH 1.26 (0.27 - 4.2)

T3 3.9 (3.1 - 6.8)

I did as advised on here with regarding to timing, not taking levothyroxine prior etc.

I have the condition Acromegaly where my body produces too much growth hormone. I had a macroadenoma pituitary tumour, most of which was removed in 2010 but a few cells remained and i then had stereostatic radiosurgery to eradicate the cells. I have been on Landreotide Somatuline Autogel (somatostatin analog) injection since the radiosurgery until January this year when it was stopped as growth hormone is now well controlled.

I currently feel really low, hair thinning, weight gain,struggling with energy, chronic constipation etc

I would be grateful for any advice regarding levels please.

Thank you all.

[SlowDragon Administrator]

Your clearly now very under medicated

Ft4 and Ft3 right at bottom of range

You must be feeling dreadful

Could you afford to pay to see pituitary and thyroid specialist endocrinologist

TSH is likely particularly unreliable

Roughly where in U.K. are you

Some thyroid specialists are still offering consultation on zoom or phone if too far to travel

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

[e-mail]

Meanwhile see different GP request/insist on 25mcg dose increase in levothyroxine back to 100mcg daily

Plus testing of vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

In future

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

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. "

[Hammy1955 in reply to SlowDragon]

Thank you for your time in replying SlowDragon, you have made me feel heard. I may have confused the issue with my rambling but the dose was reduced from 75mg to 50mg!

You are right, i do feel dreadful, life is a real struggle, I have forgotten how i should feel.

It is so hard being assertive with the GP when feeling low in mood, when i did ask for at least a 25mg increase that was when the hippocratic oath malarkey came in, i did point out that he was doing me more harm by not raising it but that didn't go down well. I will try with the article you have quoted and also ask for the blood tests. Thank you.

I am in the South West, i will email Thyroid UK as advised regarding private endo.

Currently I am taking Better You Vit B12 Daily Oral Spray, D3000+K2

I am only recently aware (from this site) that vitamins play such an important part alongside the medication so i've probably been rather lax in supplement intake.

Thank you again, it's so kind of you to spend time helping us with lesser knowledge

👍

[SlowDragon Administrator in reply to Hammy1955]

I have sent you a private message