help for side effects of Graves' disease - Thyroid UK

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help for side effects of Graves' disease

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Dear Support Group of Health Unlocked,

I have finally decided to ask your help

I’ve never been really ill in my life; play tennis, do yoga every day and eat sensibly and am coming up 74.

But

4 years ago to the day now, I was pitched over onto a concrete floor at M&S when some idiot left an empty wheeled mirror-stand in the passageway to the food store which tripped me up trying to get round.

I fell right onto my throat and and jaw, and blacked out for a while.

I had a left knee operation.

I was diagnosed with Grave’s Dysthyroid, which you can only get if you’ve had hyperthyroid before – which I did, having a thyroidectomy when 25,

However I am still unwell from this fall - now 4 years ago, and wondered whether you could help with any of these really frustrating side-effects

I, Sore dry eyes, Right lid red and swollen – can’t wear any make-up

2. Aversion to bright light

3. Hair falling out

Heart won’t slow down enough to sleep unless I take half a Phenergan tablet

4 wake up with tunes in my head.

5. can’t sing any longer as mid-range notes are difficult to pitch

6 Last 8 months very soft bowel movements. (A colonoscopy showed nothing).

7 extensive peeing. And smelly as above.

8 Feel stress easily

9 now have arthritis in knees, base of thumbs and around left great trochanter – though probably this last maybe just wer and tear from old age

10 don’t know what to do about the above and feel dismayed.

Does Graves Dysthyroid ever get better? Especially these horrid side-effects?

Can anybody help with any suggestions.

NB I’m on 100 mgs of thyroxine every day.

Yours sincerely,

Jane Waller

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2 Replies

I hope you sued M&S - they are supposed to be very hot on health and safety and customer care. Do you have blood test results for TSH, Free t4, free T3, B12, folate, ferritin and D3?

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Low vitamins are extremely common, as is low FT3 after thyroidectomy

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

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

Low B12 is increasingly common as we age as well

drmyhill.co.uk/wiki/hypochl...

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