Appointment to see Endo next week. What should ... - Thyroid UK

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Appointment to see Endo next week. What should I ask?

Slappiduck profile image
5 Replies

I am seeing an Endo (privately) and was wondering if there was anything specific I should be asking.

I was going to ask about :

1). my persistently low T3.

2).The fact that I still feel so tired etc etc.

3). Low Vit D

4). Within range but low Ferritin.

What else would anyone advise. Thanks 🙃

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Slappiduck
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SlowDragon profile image
SlowDragonAdministrator

The fact you have low vitamin levels confirms gut is affected by hypothyroidism and your FT3 remains low

Ask for trial of T3

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to increase FT3

rcpe.ac.uk/sites/default/fi...

This post two months ago clearly shows you are under medicated

healthunlocked.com/thyroidu...

Are you supplementing B12 ? What about folate or a good vitamin B complex?

Medics unlikely to think you need them, but many patients find benefit

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Slappiduck profile image
Slappiduck in reply to SlowDragon

Hi Slow Dragon, I have recently had my dose of levo increased to 175mcg despite the last increase making my T3 drop.

I am not supplementing with b12 specifically but am taking a multivit. Plus 60,000 iu of Vit D for another 2 weeks, then onto a maintance dose.

Stupid question but will the endo agree with the link between hypothyroidism and low vits? I appreciate you can’t say for the specific endo, but more of a general question I suppose.

SlowDragon profile image
SlowDragonAdministrator in reply to Slappiduck

In my own experience (seen at least 3 main Endo's and many junior assistants) not one tested or considered vitamins. I was tested for coeliac (negative) but like many with Hashimoto's discovered through reading this forum, that vitamins and gluten were key

Self testing revealed Vitamin D deficiency. Endo did suggest I should supplement, but only when I specifically asked.

B vitamin deficiency and peripheral neuropathy appeared once vitamin D started to improve on supplements. More on my profile

drgominak.com/sleep/vitamin...

I did subsequently discover, when I got online access to my medical record, I had had vitamin D tested about 12 years ago and result was severe deficiency, but I had never been told or treated.

Correcting vitamins and gluten free diet have helped enormously

But biggest difference was addition of small dose of T3.

I have heterozygous DIO2 gene variation too.

Slappiduck profile image
Slappiduck in reply to SlowDragon

Thank you so much. I just realised that I forgot to reply, how very rude! How did you find out about the gene variatiob?

SlowDragon profile image
SlowDragonAdministrator in reply to Slappiduck

Currently not generally available on NHS, though there are one or two NHS endocrinologist who do test

Private testing

thyroiduk.org.uk/tuk/testin...

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