Newbie

[Jules2194]

Hi I'm new to this site. I was diagnosed with papillary thyroid cancer in 2013. A lump appeared a month after having my first baby. They took half my thyroid out and found 4 tumours and decided I should have the other half removed. That was clear. I didn't have the radioiodine treatment as they said it was contained. Prior to having my thyroid removed I was fit and healthy, happy with my weight, went to the gym 3 or 4 times a week and got on with life. I know having kids is tiring but I don't believe the way I feel can be down to that. I now have a son too. I take 100mcg levothyroxine and feel rubbish on a daily basis. Some days I can hardly get out of bed and am wracked head to toe with pain. I can't control my weight, I'm constantly tired yet can't sleep, I'm cold and I can't remember a thing. I fear I have dementia!!!! My endo who I see 6 monthly just tells me I'll be ok!!!! The last stand in told me I looked ok!!!! They won't listen or do anything as my bloods say I'm ok!!! I'm considering getting some private bloods done. Does anyone know any drs that will prescribe NDT in the UK please?

[SlowDragon Administrator]

As you have absolutely no thyroid function you are highly likely to need either a higher dose of Levothyroxine and/or addition of small dose of T3

If you post you most recent Thyroid test results, also test results and ranges for vitamin D, folate, B12 and ferritin. These are often too low and affect how Thyroid hormones work

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3 but is essential

Private tests are available

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

Vitamindtest.org.uk - £28 postal kit

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

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.

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:
[e-mail]

Prof Toft - article just published now saying T3 is likely essential for many, note he says he is reluctant to offer thyroidectomy or RAI because follow on Thyroid hormone replacement guidelines currently offered gives inadequate treatment

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

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
[e-mail]

[Jules2194 in reply to SlowDragon]

Hi thank you for that. I've just been to my Dr with a thyroid hood profile to ask if he'd do. Guess what the answer was No!!! No need. Also asked about changing meds said he wasn't an expert but guidelines are blah and that I fall within them so no reason why levo should be adequate as replicates natural etc. He thinks may be stress or menopause and is going to do some bloods to check! I don't see endo til end of Feb so will see what Dr brings up before hand. In respect of results I only get the bare minimum TSH 1.6 (0.2-4) t4 17.5 (10-20) tg 0.25(<1.0). Dr said re my research that if I go looking for this stuff likely to find but not right!!!! Thanks for the info. I'm trying to track down a professor Belchtz who is a specialist Google showed he worked locally to me but when I enquired no he doesn't!!! He seemed to have a good profile I've even tried to contact him via LinkedIn but to no avail. I don't have private health insurance but was thinking of seeing him or an alternative privately but the risk is getting the same answer as my current endo. I will look into the list though

[SlowDragon Administrator in reply to Jules2194]

Have you had vitamins tested? Post results if you have

Thyroid you definitely need FT3 tested

Huge number of us on here have to pay to get private blood tests

Get vitamins as well, if not been done and GP refuses. Often an offer on from Medichecks or Blue Horizon for all tested at £79 instead of £99

[Jules2194 in reply to SlowDragon]

Ive not had vitamins done Dr doesn't think it's needed. Was thinking if I can get bloods done privately before I go see endo and present her with them and see what she says. I. Worried they won't actually on it. If not then I'll go private. There is a guy on the list nearby who prescribes armour on NHS and notes suggest he looks at symptoms. I worry that if go down my own route NHS won't keep up with it. Surely they must have to

[SlowDragon Administrator in reply to Jules2194]

If you do private tests first, it might help make up your mind

You would need full tests before seeing anyone privately, otherwise the first consultation is waste of time and they either charge you more for tests via them after first consultation or you have to get them privately anyway. Then go back for 2nd consultation to discuss results