Hi my daughter was diagnosed with graves, doctor put her on carbimazole.
She started taking carbimazole and after a few months I can hardly recognise her
Her eyes look unfocused and dull and her entire face seems to have sagged drastically.
She never longer resembles the happy girl with bright shining eyes.
She was recognisable prior to taking carbimazole.
They have scanned her thyroid and we are awaiting results.
Because carbimazole has made her feel so dreadful, she has now stopped taking it.
If scan shows a problem requiring surgery, after surgery could she feel better and not be dependent on thyroid replacement hormones as I've been taking levothyroxine for years and the first ten years were horrendous, brain dysfunction, starring eyes, weight gain and wouldn't wish that on my daughter.
Can surgery just remove part of her thyroid gland.
Also now she isn't taking carbimazole, before anyone mention the risks, she knows about the risks, but can anyone recommend alternative medicine for symptoms. Weight loss, palpitations, exhaustion.
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AngelicUpstart
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She's on 20 mg, dose has never changed. Not sure if it's a high or low dose. She doesn't take levothyroxine, was thinking if she had surgery would she then have to take levothyroxine.
People can need quite a range of carbimazole doses.
Quite often people start on a higher dose (20 to 40 milligrams) and then it gets reduced when the thyroid hormone level is in control. That might take a few weeks, even a few months. That point can arrive quite suddenly and many find themselves hypothyroid, at least for a short while.
Sometimes dose can can be reduced to as low as 5 milligrams. Just enough to prevent thyroid hormone levels rising.
It really sounds as if no-one was monitoring her. And the switch from hyperthyroid to hypothyroid was not noticed. And she has remained getting more and more hypothyroid.
She really MUST get tested as soon as practicable. FT4, FT3 and TSH.
I appreciate that she doesn't currently take levothyroxine. But taking both carbimazole AND levothyroxine is an option.
If the amount of carbimazole completely suppresses thyroid hormone production, it is called Block and Replace. For some people, it works really well.
She should NOT be rushed into surgery. People can be on carbimazole (with or without adding levothyroxine) for many months, even years.
It is likely that she would need to take levothyroxine if she had a thyroidectomy. But this can be discussed and considered over time.
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PTU, ? Can you tell me more about it please, sorry I posted last time and life got turned up side down so wasn't aware of your reply.
I asked her to get results with ranges but they fobbed her off and just said folic was low, liver enzymes high but no treatment given for either issue.
GP calling tomorrow for review of thyroid scan so will no more then. Specialist diagnosed Graves a while back. But kept her on same dose carbimazole that GP set.
Both Carbimazole and Propylthiouracil - PTU - are Anti Thyroid drugs - and patients get switched between the 2 for various health reasons - liver issues being a common issue.
All these AT drugs do - is buy the patient time - while we wait for the immune system to calm back down again - and quite why the immune system turned and started attacking the body - rather than defending the body - is the 64 million $ question.
There can be a genetic predisposition with a family member a generation away with a thyroid health issue or Graves can just occur ' out of the blue ' - with stress and anxiety tending to be common triggers for this poorly understood and badly treated Auto Immune disease.
It's a bit like being a plane put into a holding position in the air - while waiting for a landing slot - the plane circles above loosing fuel and height and then when it is safe and the runway is clear it makes a smooth landing.
Similarly the AT drug semi-blocks the thyroid hormones T3 and T4 rising higher and higher and slowly these over range T3 and T4 levels start to fall - and the AT drug is adjusted down as the thyroid levels fall back down - and the hope is that the thyroid will reset itself without the need for any drugs.
If with Graves - this is an Auto Immune disease for which there is no cure - and we need to make sure the correct antibody blood test has been run and there is a positive TSI or TSH Thyroid Receptor antibody reading - as there is more than 1 reason why the thyroid malfunctions - and only Graves should be treated with an Anti Thyroid drug.
The NHS generally allocates a treatment window with an AT drug of around 15-18 months and if remission isn't ' found ' - a more invasive treatment is suggested such as a thyroidectomy or RAI thyroid ablation - in which case the patient becomes primary hypothyroid and on thyroid hormone replacement for the rest of their life - and living without a thyroid - is not the walk in the park for many - as suggested it is - by mainstream medical.
She needs FULL thyroid, including all thyroid antibodies, and vitamin D, folate, ferritin and B12 tested
Has she definitely had Graves’ disease confirmed by testing TSI or Trab antibodies
Autoimmune HYPOthyroid disease, also called Hashimoto’s, frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Bloods should be retested 6 weeks after each dose change in Carbimazole
For full Thyroid evaluation she needs TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once for Hashimoto’s
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease - Graves or Hashimoto’s
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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