long term carbimazole

*enough

I have a hard time eating enough fruit, too. Often, it's that I want fruit in a combination with something else, like strawberries or blueberries with yogurt, or bananas with oatmeal, or apples in a salad with tuna fish. Lately, because my husband and I are discouraged by all the conflicting information on whether or not something is healthy, we are going with more whole foods that are close to nature. I tried a quasi-vegetarian diet once, but I never want to do that again, so I try to have a serving of meat with each meal.

I have usually had the opposite problem lately: my appetite is not strong enough to encourage me to eat, certainly not frequently. Now that I feel healthier, it is a little easier for me to try to eat a healthy diet and I have actually lost over a pound this last week.

I hope you get a lot of good help from your endo.

hi all,

i have been on carbimazole for 8 years now, the drugs have been adjusted and readjusted over d years based on test results and my state of health. Because my goiter is not very pronounced, i was given 2 options for treatment; do the RAI or be on carbimazole.

contrary to suggestions to go for RAI, i chose not to because i don't feel like its a better treatment given the nature of the treatment. thyroid getting destroyed, patient gets hypothyroid for life and is stuck with d replacement therapy lifelong.

furthermore i am stiil in my 20's and havent had kids yet so i think kinda sceptical about the effects on fertility. anyway i'm glad i found dis forum as i decided to look up d long term side effects of carbimazole. just talking about it to people who experience similar issues makes me feel like am not alone.

so kerry 43 you are not d only one that has been on d drug for long. my only question is have u been feeling any particular way to be concerned apart from the general symptoms dat come with a relapse? because av been having dis ache on my left chest area for long now and my doctors cant seem to trace d problem. after 2 ECG's which came out well dey ruled out heart problem which am thankful to God for. despite this i cant help feeling like there may be something lurking in dere, does anyone feel dat way too?

dis sickness is very demanding, most times i get so tired i cant work. but God has been faithful. whats worse is d doctors dont even seem like dey kw what dey are doing in my country.

i am determined to continue with my life and pursue my career but i always feel like am being pulled bak cos of dis ailment. i just started my phd, i only pray i have enuf strength to finish through in Jesus name. Amen.

thankyou all

Hi Lynnda,

I've had all kinds of symptoms including chest pain. One time the doctor called me an ambulance, but nothing found to be wrong?!?!? 5 weeks ago after having high thyroid levels & low blood count, I took the plunge and had RAI. Have since become lactose intolerant (coincidence or RAI)? Other than that I haven't really felt any different. Both carbimazole & RAI have their downfalls - I just hope I made the right decision.

Your thyroid problems won't go away, but if the carbimazole is going ok then stick with it. RAI was an absolute last resort for me & am already feeling a tinge of regret :-(

Hope all goes well for you :-) x

Lynnda, is the left side chest pain the only symptom you have? Do you have any difficulty breathing deeply? or any water retention, swelling of any kind?

You had two ECGs? I assume that is for Electrocardiogram, often abbreviated as EKG. For congestive heart failure, sometimes a result of thyroid problems, an Echocardiogram or a Cardiac MRI is needed to show the heart function.

Sometimes in an effort to get your TSH in the normal range and keep it there, the actual thyroid hormones, free T4 and free T3 drop very low in the range or even dip below range. This can make you feel very tired. It can also cause fluid retention and, possibly the CHF I mentioned before.

If you can get your own copies of the testing, it could help see where the problem might be.

I have been on carbimazole for almost 20 years now and my endocrinologist about 2 years ago decided that the best treatment would be block and replace. This so far is working and my GD is under control. I had a partial thyroidectomy in 1960 and in early 1994 it started to grow again and since then has been overactive. My consultant sees me now every 6 months for blood tests and so far so ok. I am able, with his blessing, to change my dosage if I know I need to. I also suffered with TED and my ophthalmologist would not agree to

RAI. Feel ok so far!

Hi Fern and everyone!

I wrote on here last in March 13. I was the lady that had been taking carbimazole for 2 months and then

ended up in hospital because it killed all my white cells, my immune system. I was told I could never take it again so the consultant suggested RAI again to me as the best option .

I did have RAI in April and I feel 10 times better than I have done for several years! Yes I will always be hypo

and yes I will always need to take levothyroxine for the rest of my life but it is worth it to feel human again.

All you other people who are taking carbimazole or block and place, surely you will always be having to

take pills or some kind of treatment for always? I don't think thyroid problems hypo or hyper ever go away , do they??

Lynnie

If the thyroid problem is Hashimoto's (autoimmune hypothyroidism) it is my understanding that the thyroid is destroyed as surely as it is with RAI. If Graves, it might be more capricious coming or going and going into remission possibly as much as 20% of the time, but I'm not sure about that figure. What has seemed to be the case for me is that being treated with very low doses of Cytomel (LT3) and building up gradually, has caused the immune system to relax its stimulating immunoglobins. That is my own subjective analysis, but I will soon be seen by my 4th endocrinologist and see what he says.

Hi, i noticed this post was a year ago.  Just wondering really how things went for you / are going?

I have been on carbimazole for over a year now...

 

You may be able to stay on carbimazole and avoid radioactive iodine treatment. I've been on carbimazole for over 20 years and am ok. Worth talking to your consultant about it. 

Thank you so much for your prompt and very informative response.  Best Wishes .

For me it was. I ended up in hospital as the carbimizole killed all my immune system. I was in isolation so I didn't catch an infection otherwise it could of been fatal. I nearly ended up having bone marrow treatment. It seems many people are fine taken it but before I had started on it I had read it could be dangerous and it certainly was for me! As a result the only option for me was RAI  as I couldn't take the risk trying any other tablets for having an over active thyroid gland as the ingredients were all the same