Posted , 37 users are following.
I am on carbimazole and propranolol for a very overactive thyroid. My GP has suggested radioactive iodine. Why can't I have carbimazole indefinitely to deal with the hyperthyroid instead of having radioacive iodine and then becoming hypothyroid (which often happens its seems) and then having to take levo? is there a problem with taking carbimazole?
4 likes, 127 replies
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Guest
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shonnybaby
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on for a year and still not much improvement so looks like the radioactive treatment for me ... not so happy but if it helps
marce66
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I asked this question of a hospital pharmacist just a couple of days ago as I had been on Carbimazole for nearly 20 months (initially 60mg, gradually reduced to low dose of 5mg). At one point I was on Propranalol too. I was informed that long term use of Carbimazole can suppress your bodies ability to fight infections.
I was taken off Carbimazole for 6 weeks but put back on a low dose of 5mg in the last couple of weeks when certain symptoms returned. I may not have much choice as to next steps in my treatment; especially now that I have recently been diagnosed with heart failure. I am being encouraged to have the radio iodine treatment with prospect of having to take another tablet for the rest of my life. My only question now is whether my thyroid problems or the medication could have caused the heart failure. There is no test to prove either way, so I guess I will never know.
My advice to anyone on long-term meds, is that any new symptoms should be reported to your GP or specialist so that any risks can be avoided.
Good luck to everyone with your ongoing treatments.
councellor
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In 1987 I was diagnised with an overactive thyroid gland after suffering all of the symptoms people have already mentioned on this site. For the first 18 months i was taking Carbimizole tablets, had to come off them then as Carbimizole can damage liver if left on too long. After more tests my thyroid was still overactive and in 1989 I had the radio active iodene. I went to my local hospital and sat in a room on my own and a nurse brought in half a glassful of what looks and tastes like water, it was carried between metal pinchers, put down on the table and after the nurse had exited I removed the lid and drank it.
I returned home in my car and stayed on my own and no visitors for 48 hours, my young daughter stayed with friends, in case there there was the slightest little chance of the radio activity affecting anyone else.
I was off work for 48 hours as advised and suffered no side effects whatsoever from this treatment. All this took place 23 years ago and my thyroid has never gone underactive as can do with this treatment, altho I have put on a little weight. I have had thyroid checkups along the way, usually for other ailments, and each check has shown normal thyroid function.
valerie46873 councellor
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sheetalvirmani valerie46873
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My situation is that I was on carbimazole for around 20 months and then stopped the medicine. I was absolutely ok for 1.5 years without any medication whatsoever. Now when I got the test done again, it shows my TSH levels have gone down to 0.08. Since this is a relapse case, my doctor advises me to go for radioactive treatment. Any suggestions? Thanks
lynette1
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I am dreading god forbid if I have to have the iodine treatment that also appears to have weight gain side effects. By the way before treatment I was A symtomatic, because I was so atheletic I use to have 6mth check ups with my GP, on my last check up he said I looked awfully thin and sent me for a full blood count. It all started from there.
I am so depressed I am not sure what to do. I go walking every night even though most days it is such an effort and feeling so tired around 3on daily. I have all the side effects that I have read about except for hair loss.
Any suggestions?
ling123 lynette1
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fern12
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Actually, I had suffered from hypothyroid symptoms for about 20 years before I came out of the fog and was diagnosed as hyperthyroid, specifically with Graves' Disease (GD). In the years of suffering with hypo symptoms, I was always tested as "in the normal range" primarily due to the TSH.
With GD, I have had to resist the doctors' desires to subject me to RAI or surgery. Later, I believe it was found that RAI particularly can make thyroid eye disease (TED) worse, and that is what I have.
I hated taking the Methimazole, but learned that I could be somewhat "non-compliant" in my meds and get away with it as long as my TSH could be in the normal range. I have had 2 endocrinologists treat me. Both of them diagnose and treat by the TSH instead of the actual thyroid hormones, free T4 and free T3. After seeing Endo #1 for about a year, I thought I was going crazy, and I couldn't take it any longer.
Truthfully, I prayed, telling God I wanted Him to be my "Dear and Glorious Physician" and I got the answer that I needed to stop taking the pills.
I weaned myself off the MMI gradually, and cancelled my next appointment. I had a great summer, but couldn't avoid doctors altogether, and they were very upset that I wasn't being treated for the GD.
In September 2010 I went to Endo #2 for "a second opinion". He said I had actually been hypothyroid under Endo #1. His approach was also different. #1 started with high doses of MMI and tried to reduce them until I was in the normal range; #2 started me on a low dose and increased it gradually (but not gradually enough, in my opinion.) Again, I got the hypothyroid symptoms. Eventually, it showed up on the blood tests, and the doctor reduced my meds. When he stopped being willing to reduce the meds, I took it into my own hands (that is the value of ATDs--you can always take less than prescribed, but not more.)
I refused having my thyroid destroyed because I don't trust the doctors to prescribe sufficient replacement hormones to get me into the part of the normal range that I consider to be ideal, and which will reduce my hypothyroid symptoms.
This is what I did:
1. I would take the pill or pills at night, not in the morning, because I could deal with lower thyroid levels as I slept. (It may also have helped my lab numbers show how low I was, when I got tested the next day.)
2. If I had something very important going on the next day, and if I would not be getting labs done within the next 2 to 4 weeks, I would "skip" a day's dose so I could function properly the next day.
3. After I skipped a dose or doses, I would tell the doctor. If my labs turned out well, (which they did,) my doctor had to accept the fact that it was good, or at least not harmful, that I skipped the doses.
4. After finding out that I could get away with it on that level, I made a regular plan of decreasing my dose somewhat. I started by skipping one pill every Monday. I was totally honest with the doctor, after-the-fact.
5. After each appointment with the doctor, if he didn't decrease my dose, I did.
6. If he decreased my dose, I would follow his instructions until I started feeling hypo again, then, if I still had 4 weeks or more to my next blood draw, I would decrease my dosage again myself, reporting again at the next appointment.
I can't really suggest that anyone else do what I did, that is entirely up to you and your doctor, but I would definitely seek a second opinion (as many times as necessary) if the doctor isn't treating you right.
At my last appointment, the doctor agreed that I should be able to try going off the pills. I still have hypo symptoms and have to deal with the doctor to see if supplements can be prescribed.
Padipal fern12
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Hello, Fern! You sound identical to me! Wow! And it works because I am sensitive to the Holy Spirit I also notice very subtle changes in my body's responses. I wish I could speak with you further...of corse the doctors want to take out my thyroid but I love having more control instead of them! And I need so very little to maintain and feel GREAT!!! Thank You, Jesus!!!
Padipal fern12
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Is there anyway we can have a private conversation? I'm new on this site and even though I've had hyperthyroidism for several years I just now succumbed to pharmaceuticals but very sparingly I must add. ??. ??
fern12 Padipal
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What I wrote above was written quite a while ago, and a lot has happened since then. Now I am seeing Endos at the #4 office [I have actually seen more than one Endo at the same time in #3 and #4.]
I don't have the time right now to answer in depth, but I will say I am now free of all types of thyroid drugs. I feel healthy and happy, and function much better than I did before.
My TSH has been in the normal range for the last 2 years, and I just got the results of my most recent test, except for the free T4. I will see my endo this coming Tuesday.
Padipal fern12
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Thanks for answering Fern! I'm so happy for you! One problem with me is that I had hyperthyroidism for several years before I knew it. I have a large goiter with many hot nodules. I am responding to the medication extremely well though. Even before I started the anti thyroid meds my tsh had improved some. I tried the mmi last year and he started me out on 20 mg and I couldn't get out of bed. I then treated myself with bugleweed etc until I began having Afib. That scared me back to the doctor. When he tested my tsh it had actually lowered some but my free t3 was 10.10. I am still taking 25 MG of atenolol daily. But I feel absolutely great!!!
icecool Padipal
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I have twenty nodules non cancerous.
Last December my tsh was 0.37, T3 5, T4 16.8.
Lsy year my tpaos weere less than 233, Thyroglobulin antibodies 5.
I have had a consistently low TSH for 12 months since being diagnosed with a multinodular goitre.
I have lots of horrible sign and symptoms.
Carbimazole is contraindicated due to cardiac issues. So RI has been recommended. I also have peripheral neuropathy which is almost unbearable.
Not yet been treated for alleged hyperthyroidism yet suffering grotesque signs and symptoms which appear to flluctuate between hypo and hyper.
Have now lost faith in any endos.
Can anyone please advise or comment .
Many thanks.
icecool Padipal
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May 2015. TPOAS less than 33. TSH 0.16. T4 16.5.
JUNE 2015. Thyroglobulin abs. 5.
DEC 2015. TSH - 0.37. T3 - 5. Free T4 - 16.8.
TPOAS NOT DONE.
!
Worried about not being treated and also the horrible signs and symptoms. Has anyone else got either fibromyalgia and/or peripheral neuropathy?
Padipal icecool
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I'm sorry I have tried to answer for days but so busy i just can't. unbelievable. . Prayers that you can find answers!
icecool Padipal
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fern12 Padipal
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I saw my Endo last week. My Free T4 was just a bit high, 1.8 [range 0.8-1.7]; both my Free T3 and TSH were in the lower part of the range. They were not worried, saying the TSH is the most accurate and it is within the range, and the Free T4 could have been a lab error or some such thing.
I just need to have another blood test in 2 months to see how I'm doing.
I never had much of a goiter and I don't know much about it.
I would not take any herbal treatments or any OTC drugs without clearing it with the Endo, first. [Unless I forgot, but at least the endo knows what I am currently taking.}
I think I did right to take the Acetyl-L-Carnitine, the Methyl B12, and Methylfolate. I ran out of methyl B12 before I went to the Endo and it seems like I feel better now that I'm taking it again.
The Carnitine is a common thing for some to use while on the anti-thyroid drugs, and I believe it has also helped me keep my TSH within range during the last couple of years.
I was on a beta blocker like atenolol when my Free T3 was especially high with the corresponding high heart rate [pulse]. When I was off the beta blocker, my endo still wanted me to always check my pulse and if it was over 80 bpm to take the beta blocker again. I also took my pulse when I was on the Cytomel [replacement T3] to make sure I never took too much.
I hope you are able to get everything back under control.
Padipal icecool
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My goiter looks about the size of a fried egg when I have my throat in swallowing position. It is pretty obvious. It came on all of a sudden it seems after being under tremendous stress, losing lots of sleep when I was 55 years old. I was helping my daughter with her two children...many times I was lucky to have slept for two hours because I had SO much to do. I have pushed myself many times like that in the past as well when my children were younger. Going to college and cleaning houses to make ends meet. Years before that I had to push myself a lot because of living with a severe alcoholic and having to work cleaning up after 3 families that did virtually nothing because I had no family to go to. I had to do whatever I could do to give my children some type of home. I don't know if all that stress contributed to my thyroid finally going bonkers...I've read that it certainly doesn't help lol I will have to look up my labs which I think are in the car. My four year old grandson is still here, right now watching TV or I couldn't be typing. He's pretty wild. smh My free t3 tested to be 10.10 before treatment and the last test said it was 3.58. I feel good but I did have to go back to 2.5 MG of methimazole every single night. It seems to be working perfectly. My blood pressure monitor stopped working properly I found out when I went to the doctor. I've only had it for about 6 months in which I paid at least $80 for. I doubt seriously I can get my money back...When I was taking the 2.5 MG of methimazole every three days and only taking 25 MG of atenolol every day, my bp at the doctor's office was 140/90 so that let me know that I had to up the methimazole. To be honest surprisingly, I am losing weight better than I was when I was only taking it every three days. So for right now, 2.5 MG daily is good for me. When I took 5 MG every day, I was way too drowsy. Now I sleep extremely sound and feel great in the mornings. I don't know how many nodules I have but there are many. They wanted to take my thyroid out because they said it looks like nodules are distributed throughout my thyroid. Except mine is almost all on the left side as far as looks. I don't understand why they couldn't have take half of it out but they said no so I am hanging onto it as long as I can control it this easily.
Padipal fern12
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Just now saw this, Fern. Thank you for answering. I've taken the Acetyl-L-Carnitine before, I tried to stay away from doctors because I don't trust them very well but the one I go to now, even though he looks at me a little disapprovingly because he wanted me to take transdermal bio identical hormones...they made me eat the table legs off up until bedtime every day which many times was at 12:30 at night. I have done fine without hormones and at 64 years of age, I couldn't care less. He seems to know that I am going to use my own judgment and treat as far as symptoms. He wants me to have another thyroid scan in December.
fern12 Padipal
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ling123 fern12
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Thank you
ling123 fern12
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You give hope to the rest of us if we want to self-manage the condition. My TraB was a high 8.9 3.5yrs ago when first diagnosed. It's now 3.2. It's still high out of range. I'm struggling with intermittent attacks of weight loss with specific triggers. Wondering if I should just increase my carbimazole myself? The labs invariably come back in the normal range?!
fern12 ling123
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What seemed to help me at first was to lower the Methimazole so I can't imagine anyone wanting to increase it, or the Carbimazole which is much like it.
Maybe I am just different from most patients diagnosed with Graves disease, but I felt hypothyroid most of the time until I was far above the normal range. My T3 was usually low but my heart would race when it was high.
fern12 ling123
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I had some weight loss when I was very hyperthyroid but it didn't stay off. I try to eat normally now without denying myself anything I would want to go back to in the future. My experience with dieting is that I would gain the most weight after having been on a diet. I can't have chocolate or I will be sick for about 3 days after I do. I don't drink coffee, tea, or alcohol either, but I like ice cream and a lot of carbs like potatoes, bread, cookies, etc. I did not gain weight during the holidays and seem to be losing weight slowly now.
ling123 fern12
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ling123 fern12
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fern12 ling123
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It's not particularly diarrhea, it just makes me feel like nothing else I eat can help me feel satisfied, but more like I am starving for the next three days.
fern12 ling123
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