Help

[MillieT]

I’m concerned. I have a gp appt tomorrow as have been having a lot of under active thyroid symptoms, tired, aching muscles, weight gain, dry skin, brittle nails but my recent thyroid tests came back and thyroid was showing in normal range and tsh levels were very low. I’m worried they may lower my dose because of this. Currently take 75mcg daily. Any advice would be welcome before my appointment tomorrow please

[SlowDragon Administrator]

After RaI and period of hyperthyroid its common for a TSH to remain unresponsive

Just dosing according to TSH and FT4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

After RAI 75mcg is very low dose

Low vitamin levels are extremely common, especially if under treated

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

Did you have Graves' disease before RAI?

Low vitamins are especially common with Graves' disease or with Hashimoto's. Food intolerances are very common too, especially gluten.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

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

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3. Note his comments that Many RAI patients need addition of small dose of T3

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

You are entitled to referral to endocrinologist.....but you need to pick your endocrinologist with great care

Email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3

british-thyroid-association...

[lesley2134 in reply to SlowDragon]

FT3 - my GP just refused to add this to TSH, FT4, ferritin and Vit D because the computer wouldn't let him: ie it wasn't on the computer programme he has access to on which he ticks the boxes for the tests he is recommending patients have. The computer said no .....

[SlowDragon Administrator in reply to lesley2134]

lesley2134

Like thousands of UK patients you will need to test privately. Hence more than 100,000 members on here

Ask GP to test B12 and folate

Testing TSH, FT4 and FT3 together privately

Make sure to do test as early as possible in morning and fasting. Last dose Levothyroxine 24 hours prior to blood test

[MillieT]

Thanks for your reply, most helpful. I did have rai a few years ago. I had an overactive nodule and was on carbimazole for a year but it never quite sorted it but felt much better before this apart from being hot all the time! I will badger for more bloods as advised and go from there. I will come back on here with results and ranges and take it from there. Thanks for advice, I’m seeing a registrar so they can be easy to persuade, fingers crossed. I work in a gps under the same roof so can certainly get blood work done first thing fasting.

[SlowDragon Administrator in reply to MillieT]

20% Patients with no thyroid (e.g. After RAI) can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

[shaws Administrator]

We don't want to be in the 'normal range' once we're diagnosed and given thyroid hormone replacement i.e. T4. The aim is a TSH of 1 or lower (most doctors think a TSH somewhere int he range (up to 5) is fine when it isn't, especially if patient is very symptomatic. Free T4 and Free T3 should be towards the upper range but these very important tests are rarely done.

[MillieT in reply to shaws]

Thanks for the advice, I am going armed with this all tomorrow and see how I get on, It's great to have some independent advice before going so I know what to ask for and explain.

[pennyannie]

Hello again Millie

It is imperative that you do not agree to a dose decrease.

It is imperative that your doctor runs T3 and T4 blood tests along with the TSH.

These 3 blood tests need to be seen in relation to each other.

You also need to ensure your vitamins and minerals are optimal as if not any thyroid hormone replacement may not be utilised fully.

You have had RAI, your thyroid ablated and burnt out, your feedback loop broken, your doctor needs to look further than a TSH blood test which means diddly squat to your health and well being.

I stand by everything I wrote in your previous post.

If you get nowhere today with your doctor, can you change doctors and or surgeries ?

[pennyannie]

Hey again,

There are a couple of books that I found helpful :-

Graves Disease - A Practical Guide by Elaine Moore.

This lady has the disease and went through RAI back in the late 1990's. She found no help herself so wrote the book to help other Graves patients. She now has a Graves Foundation website of all things Graves for all Graves patients, it is well researched, well respected with an open forum very much like this amazing website. It is stateside so medical protocol might be slightly different but it is another excellent platform to dip into.

Tired Thyroid by Barbara S Lougheed - this is another American lady who has Graves and treated with RAI. Amongst other things her book debunks the TSH blood tests as Graves patients can have antibodies sitting on their TSH giving false low reads, with a doctor thinking you look overmedicated when in fact the opposite is probably more true. This is why it is imperative that you monitored on T3 and T4 blood tests and not a TSH.

I believe this lady now also runs a " blog " using the same name, Tired Thyroid.

Last but by no means least is a book written by a doctor who has hypothyroidism. It is an easy, sometimes funny read, and explains everything that the thyroid does and the implications of when it goes wrong, and we need to know all this so we can compensate accordingly. Your Thyroid and How to Keep it Healthy by Dr Barry Durrant - Peatfield.