Overactive thyroid, graves - Part 1

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.

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?

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.

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

hi, well ive been up since 4am unable to sleep due to the heat here we go again!!! hope work goes well for you but, take it easy i went back to work too soon & it completly knackered me. glad to hear you dont have thyroid eye disease we dont want to end up looking like monty feldman!!!! I know this can be can be a worry for our other halves but, on the upside we are being treated & monitored.The most frustrating thing is when people say you look well but you feel crap.I think i will end up seeing my gp in the next few days so my meds can be upped. just a thought after re-reading your threads it seems you are having to wait a long time (jan) before thy see if rai has worked are you not having blood test before then? well best get ready for work tell your wife not to worry your on the road to recovery now. elaine.

You struggle sleeping as well? The number of times I've got up for a cup of tea and put the TV on just because I'm fed up tossing and turning trying to sleep, not sure about you but i struggle to turn my mind off sometimes, thoughts wizzing through my head, usually about work. I feel so much better having been off for 3 weeks, is that the medication, the RAI, or just because I've been away from the stress of work!

Yes the appointment seems to be along way off, I questioned the 10 week wait when they told me, the appointment probably clashes with Xmas and therefore be just after. I considered phoning them but will probably just wait. I have to travel a bit to the hospital, its in Liverpool and I live in St Helens.

Work have been quite good, my line manager told me to take it easy, easier said than done, i manager a section, difficult to do that without getting fully involved. I am going to make a concious effort not to get involved in any politics and dragged into uneccasary stressful situations. It went ok today, I didnt really get to my computer I was trying to appease all the staff complaints that had built up! I do a management course on Thursday afternoons so its a bit of a skive.

If I were you I would tell the doctor about the heat, I used to get it really bad, I'd open the office window and the staff I share the office with would complain, I didnt understand??? I used to sweat alos, not very nice I know, made me a little paraniod. I am going to go back to the doctors and explain my symptoms so at least he has it recorded. I havnt been the doctors much in 35 years, now Ive been numerous times in the last 5/6 months!

Let me know how it goes at the docs, Im interested in how your doing, my waffling doesnt have much affect on people who havnt had the same experience

hi, the heat & sweats are!nt as bad as they used to be just have to wait till my thyroid levels out if thats at all possible. Someone wrote under the thread carbimazole not to have rai as she had been on another forum & they advise not to have it. I must add the people on there are`nt docs but, some seem to think they arel lol they are also mostly american so things are done differently over there. I for 1 dont like being told what to do we are all different. I have a very good gp & he wouldnt see me wrong. glad work went ok i was off for 10 weeks initially & have had the odd days off in between. Last night slept well but, i know that could be a 1 off. I work for the nhs caring for patients who are terminally ill or need rehabilitation in there own homes so, like you find work stressful. How long did you have off work after rai? ive been told 3 weeks. im from oxfordshire so know that each trust are different. Hopefully your feeling better because your thyroid is levelling out. Elaine.

Hi Elaine,

I had 3 weeks off work, they were not going to give me the time at first but when he saw how ill i had been they signed me off no problem.

I had a return to work interview, i told them that i dont want any more symptoms to start or other autoimmun diseases to start as ive been told they may as i have one. they said they will support me which is good of them. i still gota do my job obviously but they understand i dont want to get too stressed.

how were work when you were off?

Hi, my work were fantstic about the time i had off i think cos i work for the nhs they understood the illness. At the moment i feel great apart from the tiredness but, know that can change at any time. Like you i dont want another auto-immune disease but, as you know we are now more at risk ( bloody great lol)I have to have another blood test in a couple of weeks so will know then what my t4 level is. I do have a great gp who listens to me he said himself he was really worried about me last year, i had blood test in sept which was fine but by dec levels were through the roof so, it came on pretty quickly. Anyway how are you feeling?good i hope . Elaine.

Hi Elaine,

ive been back to work for a few days now, things are ok, i feel pretty good. I do hit the wall sometimes though and start to feel tired but generally pretty good. ive told work im not going to get stressed and they are going to do what they can for me.

i went the doctors this morning and he is pretty happy with how i am but didnt get too involved as its the specialists who are looking after me. ill just take it easy up to Xmas and then i see the specialist at the royal in liverpool.

you ok?

dave

Hi Dave, glad everything is going ok for you.At the moment i dont feel too bad except feeling tired all the time. I have blood test next week so will know then what my levels are.Think i need to stay positive!!!!! By christmas you should hopefully start to feel some benefot from the rai. Take care Elaine.

i feel great most the time, i get tired, really mucular tired at times and on occasions i have had alot of eye pain, hopw im not starting.

i come of carbinazole on monday so will learn how much better i am then, i keep getting hot so im not so sure

Hi, Hope all goes well on monday are they just taking you straight off carbimazole or reducing the dose? Idont get pains in my eyes but, they do get really dry as for my aches & pains they have nearly gone yippeeee! Feeling hot i reckon im a bit over (again) I hope they are monitoring you from monday? take care. Elaine.

They are not planning to monitor me, think its down to mself, if i feel too bad i always have some meds left over i could take. would have to be extreem for that though, i need to follow their advice.

glad to hear the pains have almost gone, it feels great and a little starnge when you feel good again. i do have ups and downs but i can handle that, suppose it becomes part of life?

Spoke too soon aches & pains are coming back especially my legs, arms & time.Hopefully when i have rai all these pains will go. You say you are monitoring yourself? have they said that you might go under active? I would rather be under at least you dont get the aches & pains or i hope not, though 2 colleagues are under & they dont so fingers crossed.Elaine.