I need some advice please. I have had Graves now for over 2 yrs & it has been difficult to control. Anyway since Sept 12 my carbimazole medication has been reduced to 20mg from 40mg. I have been having regular blood tests & I have been seeing an endo every 3 months. Anyway I am upset because he is making the suggestion that I am not taking my carbimazole, he is making this assumption because my TSH remains at <0.01mU/L & he says this should have recovered by now. He is also suggesting RAI but I am totally not sure can anyone give me some advice please I definately am taking my meds because I want this nightmare to end but is RAI the answer? I thought TSH took a good while to recover but I'm not sure about my facts.
My function reads:
T4 12.9 pmol/L
T3 4.8 pmol/L
Are these in the normal range, he is saying they are still slightly high, but I don't think they are. Also I was on block & replace for about 6 months & I put a lot of weight on & lost my hair so I am very reluctant to have RIA because I may end up on thyroxine & I blame thyroxine for the weight & hair loss because as soon as Istopped taking it my hair stopped falling out & I was able to lose weight again, although I have now put a lot of weight back on again.
I feel like I need a second opinion before agreeing to RAI what do peeps on here think please, any advice would be good.
I am a 54yr old female
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Also endo is saying if I don't agree to RAI I could have AF or osteoparosis He also sent me for a calcium blood test &a liver function test does anyone know why he would do this, he said to check that my bones are okay!!!
First of all, your TSH is going to be low with Graves' disease. You have Thyroid Stimulating Immunoglobulin in your bloodstream, and this will be seen as TSH by your body, so the natural TSH produced by the pituitary will be suppressed. But so long as the T4 and T3 are within normal ranges, and your pulse is not racing all the time, then the carbimazole will be working. If, on the other hand, the carbimazole is NOT working, then you will be slowly reverting to an overactive state.
With block and replace, they completely block all natural thyroid production and replace it with a 'normal' dose of Levothyroxine. Now, if when on block and replace, you gained a lot of weight and your hair fell out, that is not CAUSED by the thyroxine, it is caused by the 'blocking'.
If you had been having enough thyroxine, you should not have had that. Sometimes, though, the body seems to get 'used to' the extremely high levels of thyroid hormones in the blood and the change to normality can be a bit of a shock to the system, hence the weight gain and the hair. Remember, too, that both over- and under- active thyroid conditions affect the hair, and also not everyone who has Graves' actually loses weight.
The endo is right on one score - if an overactive thyroid is allowed to continue unabated, the result would certainly be heart problems and osteoporosis. Another danger is that of thyroid storm, which I had, which is very, very distressing and very, very dangerous. I am puzzled as to why only RAI has been offered - usually in the UK they tend to do an operation rather than RAI especially if you are younger.
Have you looked at some of the information on diet and natural treatments? If you put a question about diet for Graves' and see what comes up, I will also look. I had Graves' and nothing would control it, I had two operations, one at the age of 18 (partial) and one at 36 (total) and I now take Levothyroxine,
I was very well for many years while I was taking enough thyroxine, my problems only started when a new doctor decided to reduce it on the basis of my TSH. If I had known then what I know now I would not have let him reduce it! While I was taking enough, I was not overweight (true I was heavier than when overactive - but 6 stone 4lbs is very thin!) and my hair was OK, I was working and had good health. I do believe that if I had not had my thyroid removed, I would not be here today, because my thyroid did not respond to ANY treatment they gave me.
If you, on the other hand, can get it under control with diet, then you may avoid losing your thyroid altogether. It is all a matter of degree. Going the diet route takes time, and I did not have time, I was having hallucinations and on the verge of a heart attack!
With both RAI and the operation your thyroid has to be calmed down, or there is a real danger of thyroid storm as a result. They usually do this with Lugol's Iodine for 10 days or so before the op. Don't know how they do it with RAI.
As I said I'll look up the Graves' information for you ASAP.
Your results are in normal range, mine are higher than that yet still in normal range ! My TSH has been <0.01 for 6 years ! Iv been put on 3 different meds. Am now on carbimazole 20mg (come down from 40 like you) and my TSH still hasn't budged ! They accused me of not taking my meds even though it was obvious I was as my t4 and t3 were coming down hence the reduction in medication! Endocrinologist think they know it all but if you ask me everyone is different! As for liver and bone tests, you should have them once every 6 months or so! Graves is an autoimmune disease that can cause loss in bone density and liver / kidney problems. your calcium glands sit next to your thyroid glands, I don't know why he hasn't explained this to you. Im only 26 and have have been over active for 7 years now and still now I have to ask questions. I don't understand why he has offered you RAI they won't give me it until my TSH is normal!
Herbsgirl, As you are only 26, I am very surprised that they are considering RAI at all, as it can have an effect on your fertility. I was in my 30s and they never even considered it, but gave me the operation.
Iv read up about this ! They have offered me both (surgery or rai) once my tsh is normal ! But if you ask them what they think is best they seem to skirt round the question ! I have no faith in endocrinologists, I'm pretty sure I know more about it than they do !
No I was on carb then they changed me to ptu for a couple of years but I had bad reactions to it. I have the option to have surgery or rai once my tsh is level, to be honest from the things iv read the surgery is the better option and more successful first time ! Make sure you read up about them both before you make a decision ! The fact is we all have to have one or the other in the long term unless our thyroid corrects itself! You can't be on suppressant meds for too long they are bad for you long term ! Better to get the problem fixed than mask the symptoms !
Thank-you so much very informative I really don't think he knows what he's doing, I thought my function was normal. Do you know of any further reading etc re: THS & RAI
Hi, i also have graves disease and have been on carbimizole for over 2 years, my levels do come down on carb but as soon as they sop it my levels are sky high within 8 weeks. My endo offered me rai or surgery and i have opted for surgery on june 12th. My Liver was enlarged due to hyperthyroidisim (although i am told this is rare) as soon as i went on carb my liver started to go back to normal. i am stable on carb but have been told i am too young to remain on carb (i am 46) as it would mean a lifetime on it. hope you get it sorted xx
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