Four months ago i had hyperthyroidism (high blood pressure, heart beat above 110 bpm.
After blood exams, echo and doctor visit i started to take 3 pills of thyrozol 10mg and 1 pill propanol (10mg). After 2 months i went back to the doctor and she said that the T3 and T4 were good but TSH was high. The dr said that i need to do a surgery to remove the thyroid.
Isnt there any way i can prevent surgery/radio?
The dr said i can delay the surgery a bit and i need to continue making blood exams on monthly basis in order to monitor.
As for radio i cannot do it since i will have a new born baby in September.
I would like to check regarding the second opinion.
Thanks.
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Santos82
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Actually, your FT4 and FT3 are not good. They're too low. Which is why your TSH is high. Your doctor should reduce your dose of thyrozol. But, there's not reason why you shouldn't keep taking it, as far as I know, rather than having your thyroid removed. However, I have Hashi's, not Grave's. Hopefully, someone with Grave's will come along and give you more information.
What country are you in? You have Graves’ disease since your TSH Receptor antibody (TRAb) is positive. You need to stay on anti thyroid meds, usually at least 18 months, but longer if you are still TRAb positive at that time. If you are pregnant they should switch you to a different anti thyroid drug called propylthiouracil (PTU). It looks to me like you need a lower dose than what you are taking now anyway, as your TSH is too high indicating you are going hypo. Your T4 and T3 are still in range but on the low side. You could do with them coming up to better support the pregnancy. Another thing to bear in mind is that some people go into remission in pregnancy. But for the moment you are antibody positive and need to stay on anti thyroid meds, preferably PTU, and preferably a lower dose. It’s up to you if you want to consider RAI or TT but you wouldn’t do those whilst pregnant anyway so I’m not sure why the doctor says it needs to come out 🤔. Looks to me like you just need your meds titrated down. Do you have nodules or some other reason to remove it?
The thing is that i had a very low TSH (0.002) and very high t3 = 14.5 and t4 = 56. Then the doctor told me to take thyrozol 10mg 3 pills per day plus propanol. Then after some months the t3 and t4 were lower and tsh high as per the attached image. I went to the doctor And she said to take only one pill instead of 3 thyrozol and stop immediately the propanol. However i feel weak and with headache and not able to focus like before (are these the symptoms of hypo?).
The doctor said that i need to decide whether i want to extend medications a bit and she added that i need to remove the thyroid either by surgery or radio. She didn’t recommend radio since my wife is giving birth very soon.
I asked her if i can stop medication of thyrozol and she said that i cannot since it may go back to the initial stage of hyperthyroidism if stop or reduce the medication further.
So it’s your wife pregnant, not you. Sorry! Misunderstood. You would probably feel a bit off changing your dose from 30mg to 10mg, that’s quite a big drop, combined with feeling hypo as well. Your body needs a little time to adjust. It’s very early days for you, you need to get your dose right so that you are neither hyper nor hypo, and then stay on that for as long as it takes to achieve antibody remission. The absolute key thing is antibody remission. Don’t stop meds until antibodies are negative. Regular blood tests are important, with the aim of keeping T4 and T3 at least mid range or above. Read up about Graves’ disease. 2 resources I use are Elaine Moore and Eric Osansky (both have websites and books). You need to understand the disease and treatment options to make informed choices longer term. There’s no rush.
You don't 'need to'. It is one of the options, and should be a last resort, not the goto solution as so many endos like to think. You cannot just stop the medication, it has to be reduced slowly. So her advice to go from 3 pills to two, is not good advice - it's possible she's trying to force your hand into accepting the operation by making you feel worse with that advice. Do not allow her to bully you. Learn about your disease and make your own informed decision.
Like thousands of other people. Ironically, I was in trouble taking NDT, so it doesn't help everyone. I'm much better on synthetic T3. To each his own.
Is the removal of thyroid through surgery very risky or it is easy nowadays? The doctor said that in my case, surgery is necessary and i need to keep on taking medicines all my life after surgery.
Also she said that it is not necessary for me to do it now however we need to keep on monitoring the blood test results every month and to keep on taking medications till then.
She did not recommend radio since my wife is giving birth in September.
In your place, I would ask the doctor why it was necessary in my case, when many, many people keep taking the anti-thyroid drugs long-term.
If you have your thyroid removed, you will need to take thyroid hormone replacement for the rest of your life, because you cannot live without thyroid hormone. That wouldn't be a problem is doctors knew how to treat people who've had their thyroids removed due to Grave's, but for the most part, they don't. If you do decide to have it removed, then you need to talk seriously with your doctor before the operation, about how she is going to treat you after. You want written guarantees that she will not dose you by the TSH - which is meaningless for a Grave's patient - and that she will give you both T4 (Levothyrox) and T3 (Cynomel). Unless she agrees to that, then either see someone else, or refuse the operation.
On the subject of seeing someone else, have you not done that for a second opinion?
What is the best thing to do? Keep taking anti thyroid drugs for rest of my life or taking thyroid hormone replacement for rest of my life? What are the pros and cons of each?
The pro with the anti-thyroid drug is that you probably won't have to take it for the rest of your life. I'm afraid I don't know an awful lot about Grave's, but I know that people usually, eventually go into remission and can stop taking them. Thyroid hormone replacement (hormone, not drugs) is for life. And, thyroid hormone replacement is only as good as the person prescribing it, and they're usually rubbish. If it were me, I'd take my chances on the anti-thyroid drugs. Unless, of course, there is something that your doctor hasn't told you about why you shouldn't. And that's what you should ask her.
You are young and research is being presently done in the U.K. into producing a vaccination for Graves. For that reason I would try and hold onto my thyroid for as long as I could if I were you.
As I thought. She doesn't know what she's doing. So I, personally, would not take her advice on whether or not to have the surgery. Get a second opinion.
She should know that the thyroid makes two hormones, not just one. Therefore, the thyroid hormone replacement should consist of two hormones, not just one. Grave's patients who've had a TT often do poorly on T4 only. They are relient entirely on conversion for their T3 - the most important, active hormone - and not everyone can convert well. Very often the TSH of a Grave's patient, after TT, stays suppressed forever, and you need a certain level of TSH to be able to convert. And, there's especially no excuse for giving T4 only in France, where T3 is so cheap and easily available. It's just that she doesn't understand how to treat with it.
Also, when you think about it, it doesn't inspire confidence that she was in such a hurry to rush you into a Total Thyroidectomy, with giving anti-thyroid drugs a fair chance to work. Endos often do this because they believe it will be easy for them to treat is the patient is hypo - prescribe a minimum of levo and test once a year - rather than hyper where they have to monitor the patient more closely. A good endo would be willing to do that, for the good of the patient, rather than railroading him into losing his precious thyroid forever. I think she's a bad endo and doesn't have your best interests at heart.
Perhaps that's why the doctor is urging surgery. A constantly fast heart rate in Graves, puts you at risk of heart failure and other arrhythmia problems.
You were first diagnosed 4 months ago? The results were TSH (0.002) t3 = 14.5 and t4 = 56?
The attached results were 2 months later after meds started?
What is the range for TraB antibodies?
Do you have any other symptoms besides the high BP and heart rate?
I went to dr’s clinic today and we have discussed. She said that the anti receptor is high.
She added that we have 3 options only: to do a surgery for thyroid removal, radio to kill the thyroid, keep monitoring through blood tests if i want to postpone the surgery. She didnt recommend radio for my case.
She said i cannot keep on delaying a lot since thyrozol medicine is not good for the long run if i keep on taking it and in addition, i could be back to hyperthyroidism even if i keep taking thyrozol. She added that the medicine that i will be taking after surgery is replacement of T4, and there is no side effect at all.
She said that instead of 2 pills, i can start taking only one.
She was mainly concerned about the Anti-recepteur result: 5.04.
She said hyperthyroidism comes mainly from stress and it is my case.
I told her my heart beat is a bit fast and she said it is normal. I asked if i can do sports and she said yes since i am no longer hyperthyroidism and became somehow hypo.
Hello all, i have gone to another doctor seeking second opinion on my thyroid case. The dr said that there is no need to go for surgery and remove my thyroid. There is 30 to 40% probability thAt the thyroid grave disease will disappear after medications (need 1 year) and i can continue taking thyrozol even if it does not disappear.
I've only just picked up on this thread, but I have Graves' and have been on Carbimazole (an antithyroid drug similar to thyrozole) for more than two years. Some people remain on a low dose indefinitely.
The usual pattern (in the UK, but similar elsewhere) is to remain on medication for 12-18 months. During this time, typically the medication is reduced as thyroid levels come down. You will need regular testing: to start with, i was having tests every four weeks, now I'm having them every 8-12 weeks. After 12-18 months, if your thyroid levels are within range, they will take you off the medication completely to see whether you have achieved remission (ie your thyroid levels remain wihin range without any medication).
If your thyroid levels relapse at this stage, it may be time to consider alternative options. The problem with RAI is you would need to avoid close contact with your wife and baby for a couple of weeks, which could be difficult with a newborn. With surgery, the important thing seems to be to find surgeon that performs this operation (successfully !) a lot. Long-term medication always seems like the best option, but it probably depends on how well your thyroid levels can be controlled with a relatively low dose of medication.
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