My daughter has several of the symptoms that seem to be associated with what she thought was the beginning of the menopause, very hot, mood swings etc. However after blood tests she has been diagnosed with hyperactive thyroid and GP says Graves’ disease although he admits he knows little about this condition.
My daughter has been taking Propranalol and Carbizomide?for just over a week now and hopefully has been referred to a specialist. Although feeling a little better she finds that she keeps dribbling, is unable to form her words properly and her legs give way for no apparent reason. I have added a photo ( I hope) of her results and wonder if anyone can throw any light on this please. We know that it takes a while for medication to work it’s magic as it were.
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Worried19
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You cannot 'diagnose' Grave's on the basis of 1 TSH and 1 FT4 test. She needs full testing : FT4 and antibodies. The lab is at fault, here. With that low TSH and high FT4 they should have tested FT3. And then the GP should have requested TRAB or TSI to confirm Grave's (if he can, but that's not clear - some say they can, some say they can't, but it needs doing, anyway).
Keep chasing up the specialist referral, they can be a bit lax with that. And when she gets to see him, insist he does the extra tests.
a) Carbimazole, in sufficient dose, is very effective at stopping the thyroid from making further thyroid hormone;
b) In early stages, it is often a good idea to split the carbimazole dose in two;
c) The thyroid hormone already in the body can last weeks but when it gets used up, you can very suddenly become hypOthryoid.
As greygoose so rightly says, TRab (thyroid receptor antibodies) must be tested in order to diagnose Graves and it can be important to know why the hyperthyroidism.
Your daughters doctor needs to check her thyroid antibodies. That’s how you know for sure if you have Graves’ disease.
Her GP ought to be making arrangements for her to see an endocrinologist and she needs to see one who specialises in thyroid problems - not a diabetologist.
I was started on 20mcg carbimazole a day when I was first diagnosed - I have asthma so I couldn’t take propranolol. I was booked in for another blood test after four weeks and received a letter from my endo - that appointment was for three months from the date I was diagnosed! Anyway, I got a letter from her along with my blood test results and the 20mcg hadn’t made much difference so my endo told me to get more carbimazole from my GP and double the dose. I took 40mcg a day from then on, that was two months and I didn’t have another blow d test until he week before I was due to see the endo by which time I was quite hypo.
I started on block and replace the day I met the endo. That is how my hospital treats Graves.
I’d advise always getting a copy of her blood test results along with their lab ranges - that’s the number, usually n brackets next to her result.
I also got hold of an old page a day diary and kept a diary of how I was feeling - just a quick note - not an essay. That was very useful as the night before I saw my endo I used to go through it and jot down - just bullet points, anything longer would be too much I think - how I had been etc. Otherwise I would have gone and when asked how I was I’d have said ‘fine’ then realised when I got home that I wasn’t really fine.
I also kept my blood test results in there and any other interest8ng information I found about thyroid problems. It shows that you mean business and want to take an active part in your treatment rather than having it done to you.
As helvella says make sure you are given a patient information leaflet with your carb and read it carefully. My pharmacist also suggested I take high strength vitamin C with my carb so I always took 1000mcg slow release vitamin C with zinc and I kept very well while I was being treated.
I think it took me about three months before I felt ok and in he beginning as I needed an increase in my levothyroxine ( the replace part of block and replace) I used to feel as if I was becoming hyper again. someone on here said it was most likely I was needing an increase and they were correct. That’s where the daily notes came in very handy. Tell her good luck from me, she probably doesn’t feel like she will ever feel normal aga8n but take it from me she will. Tell her to get as much rest as she can, forget keeping an immaculate house and delegate as much as she can - she needs to be kind to herself and just do the things she actually wants to do not the things she thinks she ought to do.
This sounds very similar to my story. I was diagnosed with hyperthyroidism in October 2015 and subsequently Graves a few months later. I’ll be honest and say I thought I was dying until I found this forum and took great comfort from the people on here. Almost 3 years on and I am a lot better than I was but still not right but I’m glad I didn’t give up. I control my graves with long term low dose carbimazole as I have refused to get rid of my thyroid. I’d like to say it’s easy but it’s not but she will get there. My advice is to do lots of research and question everything your doctors tell you. Your daughter will need to be her own advocate because most doctors don’t know very much about Graves. Split the carbimazole into two daily doses as it has a short half life and keep a diary of your blood results, medication doses and how you actually feel and after a while you will be able to know your own body and manage your own symptoms x
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