Advice with Graves Disease: Hi All - I was... - Thyroid UK

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Advice with Graves Disease

9 months ago•3 Replies

Hi All - I was diagnosed with Graves Disease in June 2023 and prescribed Carbimazole 20mg plus Propranolol 80mg Sustained Release. I have never actually met my endocrinologist owing to NHS strikes, so as a 60yo man I feel pretty alone with this condition as I don't know anyone else who has it. After lots of Carbimazole dose changes which caused rapid fluctuation between over and underactive Thyroid Function, my Carbimazole has been tapered to 7.5mg but I cannot wean off Propranolol owing to loads of breakthrough symptoms. Chiefly very disturbed sleep, anxiety, palpitations, and exercise intolerance. My TSH is 6.9, T3 is 3.2 and T4 is 10.8. So according to Thyroid Function I am subclinical Hypo probably caused by too high a dose of Carbimazole. So why am I getting symptoms of Hyper? I just don't understand it and the sleep disturbance is driving me mad - waking nightly between 2-4am feeling awful! I am following all the usual lifestyle and nutrition guidance for thyroid but it's not really helping. Anyone else able to pass along any thoughts or advice? Would be very much appreciated! 👍

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CharlieUK

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PurpleNailsAdministrator9 months ago

Welcome to forum.

You sound like you have had poor care. Are you retested at regular intervals?

You haven’t included lab ranges (ranges vary between labs) but by most ranges your TSH is far too high & FT4 & FT3 are very low.

Symptoms can be very diverse & individual. There a wide overlap in symptoms, lots say they get similar symptoms when hyper or hypo.

There also other causes of symptoms such as abnormal thyroid having a knock on affect on nutrients.

Propranolol will also affect thyroid levels and just be reduced slowly when ready to stop. I think I’d look to reduce carbimazole to 2.5 per day (cut a 5mg in half).

Has your Graves’ been confirmed with positive Trab or TSI antibodies? I suspect it hasn’t as usually this is something a specialist arranged & GP can’t request this test.

TPO & TG antibodies can be requested by GP & are often positive with both autoimmune thyroiditis (Hashimoto’s) & Graves’.

Hashimoto’s can initially cause hyper results but drop, so important to confirm.

See if Doctor will test folate, ferritin, B12 & vitamin D & for gluten issues. Gluten issues common with thyroid autoimmune.

If Doctor won’t test there a private options.

pennyannie9 months ago

Hello CharlieUK

Can you please share your blood test results at diagnosis detailing the readings and ranges of your TSH, T3 and T4 and do you have any details of which antibodies were found positive and over range in your blood -

probably written as either and / or TPO or a TgAB or a TSI - and or a TRab - with words such as a Thyroid Receptor Blocking or Stimulating and detailing a result and range :

Graves is an auto immune disease which tends to only get diagnosed when your own immune system starts attacking your eyes and / or thyroid - both very sensitive and life giving organs - and quite why your immune system has turned and started attacking your body the 64 million $ question.

The NHS generally allocate around a 15 - 18 month window for treatment with an Anti Thyroid drug - such as the Carbimazole - and possibly a beta blocker - such as the Propranolol to try and off set the extremes of symptoms being experienced while we wait for your immune system to calm down and your thyroid hopefully revert to normal function without the need for any drugs.

With Graves you have both Blocking and Stimulating antibodies at any one time fighting for control of your thyroid and it can become a unpleasant game of two halves with no one winning but both the extremes burning each other during this immune system malfunction phase.

There is an alternatively treatment option called Block and Replace whereby the AT drug is prescribed to fully block your own thyroid hormone production BUT a measured dose of T4 is prescribed so your T3 and T4 do not fall too far through the ranges with you then experiencing the equally disabling symptoms of hypothyroidism.

Your symptoms are still reading as being very uncomfortable - and your blood test looking very and likely too low and under the ranges - and yes - with you experiencing hypothyroidism - the extreme opposite end of this hyper / hypo seesaw :

Unfortunately some symptoms do ' sit ' in both hyper and hypo symptoms - and again blood tests are just a snapshot in time - and tend to run a few weeks behind symptoms and just one measure of your progress during this first phase of Graves Disease.

If you go into Thyroid Uk - the charity who supports this patient to patient forum there is a list of both hyper and hypo symptoms which yo might like tick box when you feel able so to help you understand a little better where you are in all this - plus of course much more information on all thyroid health issues - thyroiduk.org -

You should be monitored with blood tests for TSH, T3 and T4 every 6-8 weeks and your dose of the AT drug adjusted if necessary as your T3 and T4 fall back down into range and hopefully stay at around mid range numbers - and with hopefully then, with most of your symptoms alleviated.

Extremely important to also get your core strength vitamins and minerals run as these alone can nose dive when metabolism goes crazy and compromised your health issue further -

please arrange - if you haven't already got readings - for ferritin, folate, B12 and vitamin D as we can also advise where these need to be maintained as just being in a NHS range somewhere isn't optimal - and some NHS ranges too wide even to be sensible.

We do now have some research you may like to read and copy for future reference ;

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

Are your eyes ok - dry, gritty, light sensitive, watering, painful - please ensure whatever ointments or drops you use - that they are all Preservative Free even those prescribed.

For all things Graves Disease - the most well rounded of all I read is that of Elaine Moore - elaine-moore.com