anyone like to share experiences of graves disease

[4plus1]

Have been diagnosed for 5 months but have been suffering symptoms for many years. I feel like im slowly going mad at the minute. Aside from the physical problems my whole personality had changed. Anyone out there going through the same thing?

no but me ex partner had this.

he had the radioactive iodine treatment and that sorted him out straight away. It wasn't painful or invasive, and it worked!
The only downside is that you can't be around young children or pregnant women for a while after the treatment.
He certainly suffered personality changes and bad phsyical symptoms before his treatment.

My advice would be to get it zapped asap.

Good luck!

I was diagnosed with Graves Disease during my second pregnancy. I did't know I had until I reported my pregnancy to the doctor and after asking 'are you anorexic' she noted that I said my heart would race on occasion. I had regular blood tests and was put on Propythiouracil. My Thyroid hormone levels fluctuated over the next year or so and as a result, the level of medication was altered accordingly. At one point I was taking 3 tablets a day and at another point I was taking none, as the medication was 'over-working'.
My baby was monitored with a doppler machine every week, to check he hadn't inherited it from me, but he is absolutely fine. There was much confusion when I wanted to breast feed him, regarding whether the medication could pass to him through the milk. My thyroid specialist said 'it was not condusive to breastfeeding' which made me decide to stop. Then the midwife said it would not have been a problem, but it was too late to start it again by then. Gutted .
My only symptom, a slightly racing heart, came occasionally, sometimes leaving me to think that the condition was worsening, only to be told after a blood test that it was all 'within normal hormone levels'. Eventually, after about a year (from first diagnosis) my results had been consistently 'normal' so I was advised to stop the medication. I did this and after 6 months of 'normal' blood test results, the Hospital signed me off and said it had gone. .
They said that in most cases there is just a 25% chance that it will return. This is something I am TERRIFIED of. Because I had the medication they said that it IS NOT something that would be suitable to take for life. So my opions would be Radioactive Iodine Treatment (can't do this - I have 2 under 5's) or surgery to remove my thyroid.
I feel fine at the moment (although still haven't put any weight on - but at one print after the birth of my son, I was physically losing weight and went under 7 stone). There isn't much of me - I'm 5ft 2" and normally weigh about 7.5 stone, but it was awful losing even more weight.
I can't say my personality changed (suppose my Husband might argue but maybe from time to time I felt irritable. But then again, don't we all?
I got VERY irritated when I explained to people that the condition meant that I didn't feel the need to sleep and couldn't pu weight on. The AMOUNT of people that said 'Ooohh - can't be too bad then' - insensitive bastards!!
I should go for the blood test, if only to ease my mind, but am petrified of having surgery.
Sorry to go on and on...hope its been of some use to you.

Hi is it. To resurrect this thread?

I have just (yesterday) been diagnosed with Graves disease.

I have had post-partum thyroidistis in the past. For those who dont know about this, it usually follows the pattern of overactive for a short time, then normal, then under-active phase until baby is about a year old.

I was only diagnosed after my second baby but 100% sure I had it after my first too and struggled on with no support thinking I was the worse mother ever and had PND, so so so tired, stressed, anxious, awful for over a year. Then suddenly I was a different person and life seemed so easy.

My third baby is now nearly 8 months and I had been diagnosed with post-partum thyroidistis when he was 3 months so I have been struggling on with no medication and overactive thyroid, and 3 young boys for 5 months now. The only medication I was offered to help with overactive symptoms was beta-blockers which I couldn't take due to asthma.

For 2 weeks before Christmas, I felt absolutely amazing and life was great; this coincided with thyroid results within the normal range. Then I began feeling awful again and expected to be told I was underactive but I was actually overactive again which doesn't usually happen with post-partum thyroidistis so I was booked in for radio active scan which I had this week. This has shown Graves disease. I am seeing my consultant on Monday and hopefully will finally been given some drugs to help me as I have reached the end of my tether now.

I don't think anyone understands how awful I feel and how hard it is being a good mum to my lovely children. By the time I get to school with them in the morning, I feel on the edge of a heart attack and can't be sociable with anyone so they probably think I am really unfriendly and stand offish now but at that point, I feel that if anyone said anything nice to me I would start crying and never stop, I often have to choke back tears in the playground. Also people think I should be thin but I'm fat(ish) so they don't believe me.

Can I join your club, I needed a moan, I'm trying so hard in real life to be the picture of calmness and positivity and managing just.

Anyone?

No experience myself but couldn't read and run.
Hopefully the consultant will be able to give you a plan and sort you out

My friend had an over active thyroid and also had awful heart racing, tearful and total personality change and drastic weight loss.

Good luck for your appointment.

Hi Zipity - I was DX with Graves disease last year after over two years of thyroid ups and downs. I am guessing you are seeing an endocrinologist, and I would definitely raise idea of further medication, the beta blockers will only bring down your heart rate and similar symptoms. I was on carbimazole (still am on a low dose) and in December I had radioactive iodine treatment (I am 52, so past the age of contact with young children - so an easier decision for me)

It is a horrible illness - I felt so ill and ghastly when my thyroid was very overactive - and it is very hard to explain to anyone how it feels. And of course depression is one of the symptoms so that doesn't help with coping with the other symptoms.

Regarding the 'shouldn't you be thin' comments - I have put lots of weight on, like you I have a hard job convincing people I know my own diagnosis, because some people do put weight on. Every time I say over active, some one corrects me and says ' you men under, - you've put on weight' - very frustrating. Part for my weight problem is due to the fact that I feel ravenously hungry all the time - and I get berated for not being able to control this symptoms, although people seem to be able to accept that I can't control my palpitations, diarrhoea etc etc. (sorry small rant, as DH has had another go at me for my appetite [anger])

I don't know that I can offer much advice - but hope sharing experiences might be therapeutic for you - when you go to appointments at the hospital, write down everything you want to ask, and have your list and make sure you ask all your questions. It's very easy to forget something, or to feel hurried and hassled when you are there.

Good luck seeing your consultant (I'm seeing mine on Wed, next week).

Interestingly - there may be a link with your earlier experiences with PND and so on, - my consultant said a traumatic experience can trigger off thyroid probs. (I had a breast cancer DX and I think my probs. stemmed from that time)

Happy to chat, if you think I can be of any help

Oh meant to say, once I was put on the carbimazole, I started to feel better within a few weeks, - so hopefully they will give you something now you have had your scan (carbimazole is not the only one they use, but the most common I think)

DH has been recently diagnosed with this recently, he is struggling with the anxiety and mood swings, but has been on carbimazole for a month and, some symptoms have reduced - his tremor has calmed down, and he has some days where he is a bit calmer, but there's a way to go yet. His eyes are effected, and are still very puffy. However, now that he knows why he feels this way, he can control his moods a bit more.

I'm a bit nervous about the idea of radioactive iodine. It would be great to have this sorted so quickly, but we have two small children.

Is he on beta blockers as well Titwillow for the tremors?

I don't know what the recommendation is for RI treatment, I know you have to stay clear of small children for a while, I don't know if it also has fertility implications (probably not as it's specifically taken up by the thyroid), I did think long and hard over whether to have it or not, and eventually decided in favour, but you have to weigh everything up.

I have to say it's not necessarily a quick fix, I had my RI in December, and think it may have started kicking in, I'm also still on carbimazole, but I starting to get a few overactive symptoms back - my eyes are very puffy atm, but I'm hoping that it will eventually be a permanent solution. Chances are it will leave me underactive, but that's more easily sorted I think.

Also the most overactive part of the thyroid will take up the majority of the RI treatment, so if it is unevenly overactive (which it is in my case) then I've been told the treatment may have to be repeated.

Hard to make these decisions when your mind feels as if you are trying to think through treacle all the time!

Good luck to your DH.

No beta blockers, not sure why. He hasn't seen the specialist yet, just his GP, we are just waiting for his appointment.

Not particularly worried about fertility issues, as we were talking about him going for the snip before he became really ill! Its just, how do you avoid small children when you have two? He would have to move out. But to where? And that would mean that I would struggle to get to work - I do more hours than him, and he looks after the kids. I just can't get my head around the practicalities of it all. Obviously if he needs it, we will work something out, but it worries me. But whatever it takes to get him well.

I think he has probably had problems with his thyroid as long as I have known him (16 years) but it has got much, much worse over the past year, to the point where he couldn't ignore it anymore.

The measures I had to take when I had it were no prolonged close contact with anyone (for about 2 weeks), close contact means closer than a couple of metres - so no hugging children, etc.
I had to use a separate toilet (you excrete it mostly through urine), and double flush and use separate towels etc for hand washing.
Dh couldn't sleep in the same bed as me.

It's about 2 weeks of separation - very hard if you have little ones, but with a lot of planning and if you can get family help - maybe possible (I'm thinking if the children could stay with grandparents or something while he was being treated). - Anyway something to think about maybe at some point. - It's not a treatment that makes you feel ill in any way, it's just very practically inconvenient.

Not sure why he hasn't had any BB's - I was put on them straight away to get my heart rate down (in fact My GP phoned me and got me in that day) - they make you feel a lot better immediately, because you don't feel so anxious and panicky.

Hope he gets to see the endocrinologist soon, and can work out what will be best for him

It just seems so impractical - we only have one toilet!

He could go stay at my mothers, but she only has one toilet too, so she could need to come here. Kids going to my parents wouldn't work, they are getting on a bit and could cope with them for a couple of days, but not a fortnight. Plus, DD is only 18 months and a total mummies girl, and I'm not sure I could go a fortnight away from her yet.

Sorry, I missed your replies till now.
Kurri, thanks for the information. I'm seeing my consultant this evening and am hopeful of some 'magic pills' that may make me feel less awful.
I'm hoping this won't be permanent, I have 3 young children, youngest is 8 months so radiation treatment isn't an option for me (although sometimes I'd like 2 weeks away from everyone!)

good luck zipity - fingers crossed for magic pills

Good luck! DH has his appointment tomorrow.

I have graves, I was on cabimazole and beta blockers however I felt horrendous on both of them, very depressed, more so than before I started taking them. I stopped taking the beta blockers first and then ran out of cabimazole so stopped taking them as well. For a couple of months I have been fine but I have noticed in he last week or so that I'm getting very breathless and more hyper so think I may have to start on he tablets again. I know I shouldn't self medicate but struggle to get to the dr's!

Well I had Graves disease 27 years ago ( I was 21)! Was on Carbimazole for a while but it wasn't working, so I had a partial thyroidectomy. Have been fine ever since!!

DH has been to the specialist, and it's confirmed he has "moderate to severe" Graves. His medication has been doubled, and he has been told there's a less than 50% chance that it will go away without one of the more invasive procedures. Also, his eyes may or may not return to normal. I already knew that from googling, but wasn't telling him as he's pretty negative about his appearance at the best of times.

Social get to the GP, this doesn't seem like the kind of thing you want to leave untreated!