Overactive thyroid, graves - Part 1

Hormones
1

Hello All,

I was diagnosed with over active thyroid 5 months ago. It was found because my pulse was 120 and irregular. Shortly after they found out i had graves disease. i dont have many of the graves symptoms but it does give me an over active thyroid. I am a 36 year old male, it seems to be mainly women who get this, only 1 in 7 are male im told.

I had a TH3 - 30 and TH4 - 75 after a few weeks of 40mg carbinazole, im also on whaferin 7mg (so far!)and propanazole 80mg.

my muscles have ached for years, i used to be such a atheletic person playing pro sport in my early 20's, now i ache and get muscle cramps quite often. i am relieved that i have finaly been diagnosed with something as i thought i was going mad, but now i want it to end

anyone been through a similar experience? i would love to hear from you

dave

2

hi, i also have graves. this was diagnosed last dec. initially i was on 40 mg carbimazole & 80mg propanalol. i then went under active which is just as bad as over!!! i am now on 10 mg carbimazole but, still dont feel me. my neck, shoulders, legs & back ache constantly ( they never did before )i have another 8 months to go before a desicion is made as to my next treatment. im told it will get better but, the thyroid is very slow to react so have to play the waiting game. i hope you start to feel some relief soon remember everyone is different but, we are here to support each other so feel free to post again. elaine.

3

thanks for the reply elaine.

i have been on 40mg carbinazole for the 5 months, they got me down to normal levels and dropped it to 20mg, 1 week later i was back in hospital with heart trouble, they put me back up to 40mg.

i had radio iodine 6 days ago, they told me to go back on 40mg of carbinazole for 4 weeks as it works, as my thryoid is quite aggressive as they put it.

i feel dreadful today, they said the TH4 level will go up with RI before it comes down, i have palpatations nd terrible hot sweats, the wife complains i smell, boo-hoo!

Right, im off for yet another shower, cheers

dave

4

Hi, just want to point out that i have had been having terrible hot sweats and heart palpatations since the treatment. i presume its because of my thyroid levels going back up. i was sat watching TV pumping with sweat. the sysmtoms ar starting to subside now im back on 40mg of carbinazole. Just for 4 weeks, then hopefully the RI will have worked??????????

Dave

5

hi, my work colleague had rai & went under active then over but, once the rai had kicked in she levelled out. i still have another 8 months to go before my endo decides what route to take. all i know is im fed up playing this waiting game. The up side is i no longer have palpitations, excessive heat, tremors etc, the down side is i have aches & pains especially my legs & shoulders.who would think that such a small organ could create so much havoc!!!!!

6

Hi Elaine/all,

I feel alot better now thanks, i think more to being back on 40mg of carbinazole as opposed to the RI working yet.

This is now day 7, exactly one week since i took the radio iodine and 3rd day of being back on carbinazole. today i havnt had the muscle cramps or pains so thats a relief.

ill keep you up to date

7

hi, glad your feeling a lot better it gives us all hope!!!! i have to see endo next week so will tell him im bloody fed up with all this pain if it went i would feel great. keep us informed as to how your feeling. elaine.

8

Keep in there elaine, make sure you tell em what the symptoms are and dont hold back. I am a little worried that i feel better because of the carbinazole, what will happen when the RI startes to work and i finish carbinaole? ive been up and down a few times and its not nice when it shoots up, all the symptoms come back and im a horror to live with, i get very irriatable

Luckily im off work for a couple of weeks, i have a stresfull job so good im getting rest

are your symptoms as before?

cheers dave

9

hi, hopefully once the rai kicks in & you are weaned off carbimazole you should feel great!!!! though will you then be under? i know this can happen to a small minority as, it happened to a work colleague. But, the up side is its easier to control an under active thyroid. most of my main symptoms have gone sweats, heat, tremors anxiety etc. i only really got the aches & pains a couple of weeks after taking carbimazole so, they could be down to that or my thyroid or both!!!!!! initially i was taking 40mg carbimazole & 80mg propanalol but now just take 10mg carbimazole.my free t4 at the beginning was 84!!!! ( should be between 11 & 24) now its around 16. im told this is within normal range but, i dont think its my range as everyone differs. never mind im sure ill get there. how long were you hyperthyroid before they offered you the rai? elaine.

10

Hi ELaine,

I was only diagnosed in May this year. I had quite severe symptoms, anxiety (kept falling out with my wife) tremors (thought it was too much alcohol!), hot swaets ( thought i was unfit) and the worse was a resting pulse of 120bpm and irregular. My heart went in rythem and them irregular again. As my symptoms were severe they put me in for it pretty much striaght away. They wouldnt let me have surgery because of the strain to my heart. I only originally went to the docs because of a sore throat, i mentioned the palpatations and he told me to come back next week, when i did he threatened to call an ambulance because he was that worried about my heart. 2 days later he phoned me at work and told me I was hyperthyoid, I said EH????? Whats that??? A few days and some more blood tests he phones me again to say I have graves disease, I thought, what BLOODY next!!!! :twisted:

:x

The carbinazole brought my TH4 down to 75 within a few weeks, not sure what it was before, he said it was off the scale. I have now learned my own symptoms and can tell if its going high again, they dropped carbinazole to 20mg and it shot back up, i ended up in hospital with an irregular heart beat, they put me back up to 40mg and a few days later i felt better again. :D

I now know i feel better because my thyroid is down, in 4 weeks when i come off it the RI should be working and i should be fine. Yes i may go underactive but ill live with that.

The other problem may be long term issues with my heart, i had a heart scan 6 weeks ago and heard nothing yet, dont know if thats good or not as i have phoned and they wont tell me. im not to worried if it is or isnt, at least ill know that i need to stay on some medication.

To think just a few months ago i knew none of this!!!! the wife thought i was lazy when i looked tired. the worse thing was the muscle aches, i thought something was wrong but didnt know what to do, now when my thyroid is down i am free of the pain YIIPPEEE, I feel young again, well until it goes crazy again, at least i know why which helps. i know im not going mad

good luck, keep me up to date, it helps to hear from people wth the same troubles/issues or what ever the word is, cheers dave

11

hi Dave, you are so lucky to have had rai so quickly. i too was admitted to hospital for 4 days due to the severity of my symptoms.I lost 2 stone in 4 weeks!!!!my thyroid is yo-yoing ( i too have graves & not long after i was diagnosed my sister was. )my husband was so worried about me but he too had to put up with my mood swings & tearfulness. i have a very good endo & gp but, they are hoping that within 18 months my thyroid will function normally i myself dont think this will happen. i would not wish this illness on anyone. this forum is very supportive & gave me a lot of comfort in the early days as you feel so alone. i know it must be hard for loved ones to understand & its even harder when they say `you look better` cos chances are we dont feel it!!!! im glad you are starting to feel better once all those hormones have burnt off & you come off carbimazole you`ll feel much better. take care. elaine.

12

Im not sure why they put me in so quick, he said i need to because its so severe. Sounds like your was aswell being in hospital so im not sure why they haven't put you forward yet???????????????????

Im still uo and down, think it may take some months/years to get it right but i know this is the begining of the end of the troubles

13

just returned from seeing endo & have been told that my thyroid is proving hard to control im now under!!! ive been offered rai but, not for 4 months as they want to try to get me level (well good luck to them with that lol) think im going to take it as im fed up with this yoyoing.much better to be 1 rather than both. maybe my aches & pains will go. elaine.

14

Gee sounds like its up and down, stick in there itll be ok eventually.

I return to work next thursday, feeling better more than not which i think is the best i can hpe for. im a college manager, cannot risk getting stressed

15

hi, i have had another thought im off to see gp on mon & im going to ask him about block & replace first. good luck with your return to work i work for nhs so know how stress is !!!!!!! elaine .

16

How did it go?

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hi, After discussion with doc its been decided that i will have rai in around 4 months. He said that my thyroid was not responding to carbimazole & he didnt like the idea of me being on medication long term so, i just have to wait now. my carbimazole has been reduced to 5mg but, ive been told its100% certain i will go hyper again!!! (great thats something to look forward to.) Do you know whether yours has definitly worked or is it to early to tell? I actually feel a lot better being slightly under (10.7)no aches & pains just a bit tired oh well better make the most of it lol. elaine.

18

Hi, I guess mine is over active again becuase this morning i started with heart palpatations again, great! i return to work tomorrow, i missed work at first but now im quite enjoying my days pottering around.

Im still on 40mg carbinazole, and generally feel ok, ill find out for sure in Jan when i return for my results. im not so sure how it will go.

do you know of any other affects of graves after RAI?

19

hi, 40mg is a high dose thats what i was on & it sent me under but, i guess in your case it has to be high cos of the rai.The only effect im aware of after rai is thyroid eye disease rai can have an effect if you already have it luckily i dont have that. hopefully you dont either. the only other 1 is you go under active & take thyroxine for life but, better that than keep going up & down. i know it can take 6-8 weeks before they know if rai has worked & in some cases you have to have 2nd dose but, ill keep my fingers crossed that its worked for you. as for work ive had a lot of time off but, that cant be helped we have to get ourselves better. elaine. ps also even if you do go under you will always have graves but, i guess you already know that.

20

Thanks Elaine, great post. I realise i will have graves for life but i thought killing the thyroid cells would eliminate all side affects, i was disapointed to learn that graves on it own can cause eyes disease(which i dont have but today my eyes are really sore) , anxiety, fatigue and mood swings etc. maybe not to the same level but its always there.

Back to work tomorrow! if i feel ok now, maybe a day in work will put me back! ill have to see. I hope i continue to feel ok, i suspect i will have to keep and eye on it(pardon the pun) My wife is stressed with the worry, i take it all quite well but this seems to make her worry more!!!!

thanks, Dave