anyone have/had graves disease/thyrotoxicosis?

[dee24]

Well looks like I do! Had the doctors today for my blood test results and have a slightly overactive thyroid. Doctor says I have caught it early when the thyroid tries to compensate itself (hence having overactive yet feeling tired at the same time) which could be why it's only borderline but felt my neck and says it is certainly very swollen.

Happy that it has been picked up so quickly, after reading about it I now know why I am having vision problems, anxiety, mood swings and why I can't sleep at night due to my heart racing and inability to stop my racing mind

I'm just being nosey to see how others may have got on with treatment etc and how quickly it worked. The doctor also mentioned that sometimes the treatment can leave you with an underactive thyriod, has anyone ever experienced this?

Ive had both hyperthyroidism/thryrotoxicosis, but I had an extreme case (off the scale for 2 of the thyroid hormones )that sadly was untreatable with drugs, so in the summer had my thyroid removed.

The first time I had it diagnosed ( 3 years ago), it took about 6 months of medication for it to go back to normal, but in 20% ( I think my consultant said) of cases it can return, and did not respond very well to medication, but theres still other options to cure it, radioactive iodine, or part/complete removal of the thyroid, but this is quite rare, but don't worry about it, as it changed my life overnight!

Its really important to get regular blood tests for your thyroid hormone levels, so they can adjust the tablet levels accordingly, and you should see quite a quick result when you start the medication.

It does make you feel so awful, but there are drugs to help with the palpitations, and anxiety, so make sure you ask if you need them.

Funnily enough Ive just been fully discharged from hospital today, so glad my ordeal is finally over!
Any questions please ask! Ive become an expert after 3 years of it

Poor you! I think my symptoms are bad enough and if that's just borderline then you must have felt awful! So how do you feel now?

I have to get my blood tested every month for the time being, and the doctor did say if my symptoms got worse before I get to the hospital they could prescribe me something. The reason he didn't just now was because I have moderate psoriasis and they make it worse. And i really don't want that flaring up!

I'm hoping the medication works first time round, the radioactive iodine drink sounded a bit scary lol, but he did say these are only if the medication doesn't work.

Hi Dee
Yep, I had it, quite extremely so. I had all the normal symptoms, racing heart, itchy, couldn't sleep/settle, agitated, lost two stone in two months etc.

I took Carbimazole for a year and then was booked in for radioactive iodine. To be honest I kept putting off as I was told I would have to take Thyroxine forever (as I would be left UNDERactive), and also I wanted to be able to hold my babies!! Which I don't think you can for the days following.

So...I put it off and...it sorted itself out, yes, really!!

Have been off the Carbimazole for two years now and it has never returned

Have you had a baby in the past year?

Hi
I also had Graves disease - carbimazole didn't do the trick and neither did the first lot of radioactive iodine, but the second (much larger) does did. I felt quite ill for a couple of days after the second lot, but I was lucky in that I didn't have children at the time, so just had to stay away from dp (and work!) For a while afterwards.

I quite liked the symptoms of Graves - I loved that I lost weight without trying and I felt like I could do anything in super-fast time..! But the palpitations and tremors eventually got me to my GP.

I'm now permanently underactive, which is OK as long as you get the thyroxine dose sorted out. That's taken about 3 years for me, but it's fine now. And you get free prescriptions for life..! (There's always a bright side...).

Dottydot - I agree with the weightloss and stamina!

My house was never so tidy and I lost all my babyblubber in two months, even though I was eating for England - sadly I put it all back on with the Carbimazole

I had overactive thyroid about 13 years ago. levels were off the scale. tbh I'd had simptoms about two years previous, sudden weightloos/palpitations/anxiety, but as I was doing exams that year I'd put it down to stress and hadn't done anything about it/told anyone. It was only when i stopped having periods that I went to see my gp and eventually she diagnosed overactive thyroid.

I took carbimizol (sp?) for about 18 months and after that it was fine. I do still have blood tests to check my levels (when I can be bothered ) but haven't had a recurrence since then.

My sister also suffered an overactive thyroid after the birth of both her dc, and the consultant told her that a shocking 75% of women have an overactive thyroid post partum but that for the majority this rectifies within six months so they never actually know.

I had my dd just over a year ago, but strangly I felt great until a couple of months ago. However thyroid problems run in the family but it's usually underactive.

So how long do they try the drug treatment for then? And why does the RIT make you feel unwell? Just being curious

I wish I had stamina though, I can't help but sleep all the time, due to my thyroid trying to balance things out. But really I can't stand the palpitations and anxiety

Luckily I have been quite slim my while life, but I was thinking that I should be at least a stone lighter with the amount of choccy/cakes/take-aways I'm eating. When I ate like this previously I was a size 12 lol! So looks like I'll need to get that sorted damn it!

Dee, I was diagnosed in November after I had had my baby in the January.

I realise now it must have been post-partum and probably would have sorted itself out anyway.

But, surely my Consultant should have realised that and gave it chance to settle before sending me for radioactive iodine!

The doctor never mentioned anything about it being to do with having a baby. But then again I think that may be due to the family history of thyroid problems.

God I hope the hospital don't send me away, I'm looking forward to getting back to normal!

Dee, if the anxiety and palpitations are a problem, they can prescribe valium for the anxiety, and beta blockers to slow the heart rate down, which I was on, and they worked a treat, even if I was drugged up to the eyeballs all day! I don't know how serious it has to be to get them though, I was on a maximum dose of both, and they still didn't completely shift it, but helped alot, and the relief of being able to sleep again was bliss!.

I'm feeling fantastic now, a new woman after 3 years of constant migraines,anxiety tremors, fits etc
Sadly the surgeon damaged a major nerve getting my huge evil thyroid out, now I have a very husky voice, and can't sing, but still worth it a million times over for having my life back again. Just take things easy, and hopefully you will see those levels inching back down again

The doctor mentioned beta blockers but they make psoriasis really bad (mines already quite bad) so he told me if I felt I really needed them to let him know. I feel as though I'm ok just now as it's not affecting my everyday life too much.
I don't think they would give me valium for the anxiety, have dd to take care of and still need to make it to my work lol! I'm just thankful that it seems to have been caught early before I get the full effect of the condition, sounds as though it can get much worse.

Hi Dee
I was diagnosed with Graves disease 14 years ago. I didn't notice the symptoms for what they were until a colleague insisted I saw my GP. I had palpitations, difficulty sleeping and the worst symptom was suddenly feeling terribly hot and sweaty all over for no reason. I had drug treatment with carbimazole but had a nasty drug reaction so swopped to propythiouracil. I went slightly underactive afterwards but not a problem really. I was put on beta-blockers until my treatment started to keep the heart rate down. I am sure you will feel better after treatment, good luck with it.
Rachel

Yeah I get that horrible feeling sometimes as if I'm going to pass out due to the heat (even though it's not that warm?)

Is the increased heart rate any danger to me? I'm healthy otherwise. It seems to be at around 90bpm all the time, the doctor doesn't seem very concerned so do you think it is ok to wait until I've been to the hospital? I only really seem to have palpitations a couple of times a month.

I think you will be ok - just avoid strenous excercise in the meantime. I was diagnosed just after spending a week's holiday climbing mountains in Scotland and feeling quite ill at times during the week. It did explain a lot! Try not to worry, you will be fine.

Hi, I wonder if anyone is experiencing joint pain/aches/stiffness with their overactive thyroid. I would be grateful to hear if anybody has.

YES ME! I'm getting real problems with my knees. My consultant was pretty rubbish in terms of explaining why this might be (I thought it could be the Carbimazole, but apparently not), but my theory is that as too much thyroxine makes your muscles break down (my thighs have shrunk to nothing - for the first time in my life they don't meet in the middle!) I reckon my knees are taking a lot more strain than they usually would, because there's not the muscle there to support them. I used to jog/do aerobics every morning but I couldn't now - I tried the first Monday after my christmas break and after 10 minutes (of increasingly noticing something wrong) I nearly collapsed with the pain.

I am trying to exercise a bit, but low-impact stuff like yoga and using my exercise bike. I think it's important to try to keep my muscles strong whilst the carbimazole slowly chills out my thyroid. Obv, I'd advise you to avoid anything that exacerbates your stiffness/pain - and also get yourself some cod liver oil capsules, I'm sure I've been feeling less joint pain since I started them.