Should my Thyroxine be put down?

[Jojozo]

Hello all, I've just had my latest results and my doctor has lowered my Thyroxine from 100mg to 75mg. Does that seem right? I feel very unwell and I'm putting on weight despite suffering from severe nausea, so I am definitely not over-eating.

I'm 49-year-old woman who was diagnosed with an underachieve thyroid when I was 21 and I also have Hashimoto's. I am in surgical menopause after a full hysterectomy two years ago (which could also explain the weight gain!) and I've just started back on HRT. I have also been diagnosed with Fibromyalgia, and I'm currently trying to get the bottom of what's causing it. I have been supplementing recently via a practitioner (who sadly made me feel more unwell because she has had my hopping on and off all sorts of supplements!) so I am no longer seeing her.

I fasted before my early morning test and I didn't take my medication the day before, as advised. I am not 100% gluten-free because I slip up sometimes. Gluten intolerance hasn't shown up on any blood tests but again, I do on the advice I've had on here.

My B12 is high, but it has been for years.

Thanks in advance for any advice!

T4 - 17.5 pmol/L - Range: 11.1 - 22 pmol/L

T3 - 5 pmol/L - Range: 3.1 - 6.8 pmol/L

TSH - 0.08 mu/L - Range: 0.27 - 4.2 mu/L

Ferritin - 96 ug/L - Range: 30 - 150 ug/L

Folate - >20.0 ug/L - Range: 1.9 - 25 ug/L

B12 - 823 ng/L - Range: 197 - 771 ng/L

[GlowCoach Administrator]

According to a previous post of yours your TSH has been low/suppressed for many years. Doctors really do need to understand that TSH is not the best indicator of thyroid status.

Many people who have previously been hyperthyroid or treated with T3 have an unresponsive TSH that will always leave the person hypothyroid if thyroid replacement dose is dropped.

Free T4 (fT4) 17.5 pmol/L (11.1 - 22) 58.7%

Free T3 (fT3) 5 pmol/L (3.1 - 6.8) 51.4%

Your free results show that you have room for a Levo increase but you are at least converting well.

Could you find a decent Endo who will take charge and get you well?

Email [e-mail] for a list of Endo's.

You could also quote NICE guidelines and take responsibility for the low 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. "

If you are not supplementing B12 then your raised result could be whats called a paradoxical B12 deficiency. Have you had an active B12 test done - would need to be privately. iomcworld.org/articles/para...

[Jojozo in reply to GlowCoach]

Thanks so much for your reply. As you may have read, the T3 was prescribed about ten years ago by a private doctor who was an absolute fortune and has now been struck off. You live and learn! I think an endo is the way to go. I've been seeing functional practitioners, and the first one wanted me to go back on T3. The most recent one wanted me to come off Thyroxine altogether and supplement instead, which I'm not sure is the best route to go down! I'm not supplementing with B12 so I'll look into getting a test done now and have a look at the list of (approved!) endos.

[GlowCoach Administrator in reply to Jojozo]

One has to be a little careful with function doctors or even some private doctors. One recently suggested I take large doses of iodine which I politely declined and explained that it wasn't helpful if the thyroid condition was Hashimoto's which he wasn't aware of! There's something else he thought I might try in time which I wouldn't be keen to but actually otherwise he's been great and overall I am happy with him.

It might be an idea to start a post once you have picked and Endo or two and ask for feedback on them via personal message. Many Endo's only treat by TSH so you need to be cautious.

[Jojozo in reply to GlowCoach]

I didn't know that about iodine. Thank you, that's really good to know. I've been given so much conflicting advice over the years so I need a good solid endo I can trust!

[SlowDragon Administrator]

Results suggest you need dose INCREASE in levothyroxine

Refuse to reduce dose

Quote NICE guidelines GlowCoach has given you

no vitamin D test

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

[Jojozo in reply to SlowDragon]

Thank you. Instinctively it didn't feel right to reduce the dose. I'm not sure why vitamin D hasn't been checked. I've just checked my results file and it hasn't been done for a while. I may do that privately when I do the B12. I could own a house in the South of France with all the money I've spent over the past ten years, but I'm sticking to the recommended experts from now on!

[Bearo]

Your results are similar to mine (mid range frees, but my TSH is lower) and I recently had my dose reduced with no consultation. I wrote a letter to the GP (whom I’ve never met) refusing the reduction and she agreed to put it back up again.

[Jojozo]

That’s great news. I think I need to do the same, but my GPS are pretty stuck on lowering it. It’s worth a go though!

[Jojozo in reply to Jojozo]

p.s. The never met part is crazy. I had a GP consultation the other day and the doctor's kids were running around screaming in the background. It doesn't seem that many GPs do face-to-face consultations anymore.