Hyperthyroidism

[GSD83]

Hello, my name is Gavin and I'm from Dublin, Ireland. Today I've been diagnosed with Hyperthyroidism and the doctor said my T4 is 100, the highest he's ever seen. I've been prescribed Neomercazole. Any advice on how life is on this medicine? Thanks in advance, I'm new to this forum.

[Qwerty12345]

Hi. I have an overactive thyroid caused by graves and started anti thyroid meds this time last year. I developed hives one month into carbimazole and although it was not certain the carbimazole caused the hives it couldn't be ruled out and so I was changed on to ptu, the second choice drug. Anyway, I felt very unwell before I started treatment but a million times better within a couple of weeks of starting, I cannot stress that enough! I became underactive after around four weeks but I felt very well. My dose was adjusted accordingly after that and after each blood test. I've been on a minimal dose now for some months and due to stop altogether very soon. Hopefully remission after that. I responded very quickly and very well to the medicines and other than the hives am not aware of any side effects. Everyone appears to react differently to the medicines so hope they work well for you.

[GSD83 in reply to Qwerty12345]

Dear Qwerty

Thank you very much for your reply. I'm delighted to hear you're doing well, it's a journey we will be on, but try make our lives better with this disease. I'm on 3 tablets per day, I've another blood test at the end of the month. I lost a lot of weight due to the Hyperthyroidism. Did you gain your weight back?

Regards

Gavin

[Qwerty12345 in reply to Qwerty12345]

I lost around half to three quarter stone before diagnosis. I put the weight I'd lost back on after begininning treatment (and probably a smidgen more as I became hypothyroid). Very quickly weight back to normal though and just as it was prior to becoming ill.

[glo42]

Hello Gavin and welcome to this site. You are sure to find it very helpful and everyone is supportive on here.

I haven't heard of your medication but was prescribed carbimazole when I was diagnosed hyperactive thyroid in April 2011. Fortunately, I have been one of the lucky ones and have little side effects from carbimazole.

Initially I did lose weight before being diagnosed hyperactive thyroid but my weight returned and I do battle to keep this stable.

I began to feel a little better 2-3 weeks after beginning medication and I hope that you also will soon feel better in yourself. Hyper/Hypo thyroid conditions give us all a real roller coaster ride experience but this site is a blessing, so come back and share your journey with us all. There are very many much more knowledgeable than I am who will want to help you in the weeks and months ahead.

My Consultant stopped my medication 2nd January this year and I have had regular blood tests and remain within the "normal range"...... so far, ....so good. I have had other times when remission periods have lasted and then the nasty hyper symptoms return. I am standing my ground and refusing RAI or surgery.

I suggest that you read up all that you can to make yourself better able to cope daily with your hyperactive thyroid condition. Good Luck and best wishes to you today.

[GSD83 in reply to glo42]

Hi Glo

I started my mess today, one three times daily. For some reason my appetite has increased rapidly. I hope this is not placebo, but I know it's only a very early stage. Thank you for your information, it really helps. Hope I have a better life in the future. I lost over 2 1/2 stone because of it.

[ripon1756]

Hi Gavin,

I was placed on neomercazole tablets many years ago for an overactive thyroid gland. For a while it was o.k. and then I developed a problem and was given steroids for a short period of time which increased my weight. Eventually I was given the radioactive isotope which resulted in my thyroid becoming underactive. Everything went well for the next 10 years until I was diagnosed with Avascular Necrosis (which was caused by the steroids I'd been given briefly all those years ago for my overactive thyroid gland). As the result of getting Avascular Necrosis in my hip bones, I had to have them both replaced. I now take 100 mg. of Levothyroxine for an underactive thyroid gland.

[GSD83 in reply to ripon1756]

Hi Ripon

I started my meds today, all ok so far. Thanks for your reply.

[marialefkada]

Dear Gavin

I am really sad to hear that you just found out today that you suffer from hyperthyroidism....

From 2006 up to 2014 I have suffered so badly with small intervals in between....

It's ruled my life to such extent, my character, my everything...

So much nerves, so much depression.

In December 2014 had a total thyroidoctomy, still keep fighting and waiting for a change. I'm trying to be optimistic, I have to for the sake of my little boy...

The reason I'm telling you this is not to scare you but to URGE you to be very careful with your choice of doctor, medication and do whatever it takes to get better.

It's been a few days since I joined the forum. It's good to know that there are people who are willing to hear your problem and help you.

You are not alone.

I wish you every luck!

Regards

Maria Lefkada

[GSD83 in reply to marialefkada]

Dear Maria

Thank you very much for your warm rey and concern. I know my GP twenty five years, so I do trust him. My results were sent to him from my local hospital. I have to get more blood tests on 12th November. Fingers crossed.

Regards

Gavin

[GSD83 in reply to marialefkada]

Sorry to hear your situation also, Maria. I'm 32 now, so hopefully I can fight it. I'm a chef and I will make health juices and smoothies on top of the Western medicine.

[Fruitandnutcase]

Hi Gavin, Ive been in remission from Graves for a couple of years now. I was a mess before I started on carbimazole. I'd had and managed to ignore the symptoms for quite a long time then by the time I was diagnosed I was pretty ill. I spent four weeks on 20mcg carbimazole a day (it didn't make much difference) then I upped the dose and spent two months on 49mcg taken at the same time in the morning. I can remember feeling pretty awful drug the first month, more I imagine because I was so ill than because of the carb. Once my dose was increased the pounding heart etc settled down. Unfortunately I didn't have a blood test once I went onto the increased dose so by the time I saw my ends I had become quite hypo which wasn't much fun, my hair fell out and my finger nails disintegrated. My hospital treats by block and replace so at that point I started taking levothyroxine. I started on 50 much and increased to 100 by the time I stopped the treatment. One day you are taking carbimazole and thyroxine - next day nothing and y wait t see what happens. So far for me nothing, I'm still in remission two years on.

You could easily find you do well on carb so I wouldn't worry too much about it. When I started my pharmacist came out from behind his counter and said I ought to be sure to take a high deeper of vitamin C with my carb, I didn't ask why because I was already taking vitamin Cso apart further fact that I gather vitamin C is good for healing I don't know what the reasons were.

I found I needed an awful lot of rest and slept as much as I could - felt like round the clock at times. I was quite ruthless about only doing things I wanted to do and not things I felt I should do. I delegated as much as I could, my husband shopped and cooked.

To begin with I felt so ill and weird that I didn't think I would ever feel normal again but I do and hopefully so will you.

[GSD83 in reply to Fruitandnutcase]

Good evening Fruitandnutcase for your very detailed reply. Great news you're in remission, I hope it stays that way. I'm on 3>25mg of Carbimazole daily. I've no adverse effects for some reason. Maybe because people's bodies are different. I have an increase with my appetite, could that be the case? I'm taking cod liver oil in the morning also.

[Fruitandnutcase in reply to GSD83]

Don't know why it is, I always felt perfectly fine on the carb. The first month I felt awful but it was the carb, I think I was just really ill with the Graves, I had been struggling along feeling terribly poorly while telling myself I didn't really feel as bad as I felt for so long and eventually my body just couldn't go on. Once the carb got my bloods to a better place it was onwards and upwards.

Unfortunately I eventually put on all the weight that I lost I maybe felt awful and was falling apart but I'd lost so much weight I looked amazing so I was kind of disappointed that it didn't stay off. On the other hand my it was probably just as well because my thighs were so thin and weak that I had to hold on to things to get up from ground level - I thought it was because I always had so much junk in my backpack - little did I know!

Interesting that you talk about gaining though because I tried fish oils for a while and I felt they were making me gain weight ( I was probably completely wrong though)

Make sure to have your B12, vitamin D, ferritn and folates checked out, you need them all to be well up in ther ranges to benefit your thyroid. I found it difficult (impossible) to get my doctors to do that so I used the private testing companies that are listed on the TUK website (not this HU site) it was easier to do that than constantly be begging for tests that they didn't want to do. I started to use Blue Horizons when I found my T3 was never ever tested and they were talking RAI should I not go into remission. I thought ' you would do that and you don't even know what my T3 is! ' So I use the BH home finger prick test, easy and fast. If you click on my profile there is a link to an interesting little video that talks about the vitamins you need for good thyroid health and when I first saw it I was really pleased to see I was taking all the right things.