HELP so confused about Graves disease. I was diagnosed at 14, I am now 20, and only just come to realise how serious it can be.. :(

[jrosebud]

Hello! I'm very new to this, a family friend has told me for years to research properly about my graves disease, and only recently I have become very worried about my condition..

I have been hyper and hypo a few times over the years. I was diagnosed with hyper at 14, I was disgustingly thin and weak, couldnt sleep for over a week at a time, hair fell out in clumps, my eyes were so wide I was accused of abusing drugs at school simply down to how I looked, and obviously so tired I couldn't function properly.. My periods stopped completely, and with my immune system being so low I was ALWAYS poorly, constantly sweating, i was having ice baths before bed, and had a constant shake and I couldnt stay still for longer than a few seconds.. It got to the point of suicidal thoughts because I thought I was simply just going mad and it was all in my head!

- I'm not too sure on dates or amount of thyroxine and other tablets I was taking because at the time I didnt understand, and wasn't explained to properly exactly what was wrong with me! I was basically told my body is working too fast and my tablets were to slow it down to normal, and that I was at risk of a stroke and/or a heart attack.

I was going for blood tests nearly every 2/3 weeks to keep track of my t4(i think?) levels! (i apologise I'm still not clued up at all)

The doses of either propananol/carbizamole/thyroxine (ive been on them all!!) there were some more but ive no idea what they were called, where changed a lot to get these levels that weren't right to a normal level, until i came off the tablets for a few months. then I was putting on a LOT of weight, I was constantly sleeping, freezing cold, and was the total opposite to before, to then i was told i was then Hypo?

My levels eventually got back to normal after taking thyroxine i think for around a year..

then levels changed and my levels went crazy once again and I was given beta blockers, I was then hyper again after a few months, this was last May (2012) which was the last time I saw my consultant. I was taken off propananol because they were messing with my mind - or i felt as though they were, I was paranoid and depressed, i was seeing things, frightening myself and the people i surrounded myself with..

I am now taking 20mg of carbizamole a day, and have been for the past year.. I was meant to see my consultant over christmas (2012) but i had to have a tumor on my ovary removed, plus the ovary. And only just able to get an appointment to see someone! which isn't till the end of may this year now, so 3 weeks away..

I believe and feel I am now a little hypo, I'm feeling so down and confused, all my consultants have been nothing but useless, and just giving me all these pills with no information that I would understand properly! I'm very worried for my health, and never had anyone to talk to about it properly and i've no idea what questions to ask! what foods i should or shouldn't be eating, and what will benefit me for the best and hopefully keep my thyroid levels reasonable!

Would appreciate ANY help or advice!

Thankyou for readinggg xxx

[helvella]

You poor, poor rosebud.

I rather agree with the family friend - reading and finding out about it all is your best defence. But please do not take that as a criticism of the past, that was then and I am sure it was difficult enough.

I suggest you have a read of a few links:

thyroiduk.org.uk/tuk/about_...

en.wikipedia.org/wiki/Grave...

One thing always to remember, everyone is different. So, whatever you read or are told, your pattern of symptoms, etc., could well be different.

One thing that might be really helpful both right now and into the future: Get a notebook or diary, and make notes of your treatment, blood tests, symptoms, etc. Over time, you are bound to forget things (well, I do!) so having it all written down means you can check back.

You will find that your memory, even five minutes later when still fresh, will not be the same as is written in your medical notes. Often doctors get things at least a little wrong - so doing it yourself is the only way.

Always a good idea to get the results of all blood tests - if possible, get them to print them out for you, and include the reference ranges. This shouldn't be difficult but some GP surgeries can be a bit funny.

All the best

Do keep posting as you need

Rod

[jrosebud in reply to helvella]

Thankyou Rod! Well everytime I do see a consultant, I dont have the same one everytime you see, they have a MASSIVE file for me, so hopefully ill be able to get some previous results and dates, and maybe look into seeing a trusted specialist.. I know every case is different as nobodys mechanics works the same as someone else but ive never had anyone else to compare to! Also all the trouble ive had with my ovaries and so on, all my concern has gone into that rather than this condition its almost been kind of ignored and just taken my medication as i always have! i just hope ill be able to make some more sense of it at my next appointment

[Hidden]

Blimey - you have been through the mill, it's awful for us to try and understand Thyroid problems as adults and that must absolutely terrible for a youngster. Rest assured there are folks that can relate. I would say you are not new to this with 6 years experience.

Are your meds working? Have they offered you any alternative to medication? Graves sufferers eventually tend to have a Thyroid op (a total thyroidectomy - I had a partialT because of a nodule and it did help my Hyper symptoms - but I'm not the same as you),

however afterwards you will become 'Hypo' and need medication (hormone) for life, although doctors find this easier to treat you will find a lot of us with unresolved hypo symptoms here, but to be honest Hyper feelings are really nasty, not that Hypo feelings aren't too, but they are less dangerous. But of course you will have to weigh up which is better, I'm sorry.

Radio iodine treatment is an alternative but usually not recommended with Thyroid eye disease. I'm sorry I don't know about ovary problems, except notice a lot of folks have a PCOS connection.

I hope you can make sense of it all, don't forget that iron/ferritin folate/B12 and vitamin D are all in the mix to feel better. Take care and very best wishes, Jane

[marram]

You poor, poor thing. I was diagnosed with Graves' at 13 and I had a lot of the problems you have. I was actually sectioned at one point when I was older. You must have had a nightmare of a time at school. I could never reach a normal weight, I found it hard to concentrate, constant obsessive and intrusive thoughts, suicidal tendencies, I had TED as well, people used to make fun of me because they said my eyes were popping out of their sockets.

Like you, I was on Carbimazole but not beta blockers - they used to give phenobarbitone then. I also had yo-yo weight. varying from 6stone 4lbs to 11stone 4lbs.

I had a partial thyroidectomy at age 18 and it was effective for quite a long time, it certainly enabled me to live a normal life for about 20 years, before I became overactive again and I was on carbimazole and beta blockers until I had the rest of it removed. In my case, RAI was not an option because of the Thyroid Eye Disease and also because I was still young enough to have more children. (never did but that's another story!)

Another thing which resulted from my thyroid being overactive for so long was that personal relationships were always a total disaster. My volatile personality was too much for people to handle. I only managed to maintain a relationship after my thyroid had been removed totally. I married at age 47, although I was a single mum from the age of 20. Somehow my body managed to find a window when it was well enough to become pregnant!

Since then I have been taking Thyroxine and for many years I was well-treated and did not have many of the problems associated with lack of thyroid. I was a healthy weight after the initial weight gain, I managed to lose the surplus weight and although I was never as thin as before I managed to stay at a healthy 7and a half stones and size 10 - 12 whereas when I was overactive, size 8 was too big for me.

(My experience later was a different story, due to a bad doctor.)

Overall I am glad I had the final Total thyroidectomy, and if anyone were to ask me which is worse, I would have to say that being overactive is far worse mentally, but being under-treated when your thyroid is gone, feels worse physically. Truthfully, though, either way is horrible. People who have never had thyroid troubles - whichever way - do not have ANY idea how it messes with your mind and body.

Right now, the best advice I could give is to look at Mary Shomon's website and on there it will give guidance to where you can find diet information such as foods which can suppress the thyroid. If you search for 'Mary Shomon' You will find her very quickly and there is plenty of stuff on there and links to other sites which can help you (unless someone here can give you the links directly).

Hope you feel well soon

Marie XX

[greenginger]

Hi are you aware of the links suggested between ovarian problems such as cysts and being hyper? I am hyper and had ovarian cysts removed over 13 years ago.

I do hope you can get some answers on here. All the best. It is a tough thing to live with.

[Silver_Fairy in reply to greenginger]

Is there a link to Polycystic Ovaries too?

[greenginger in reply to Silver_Fairy]

Yes I am sure I have read such a link on other sites. Wish I had kept a note of them but I am sure such a thing has been discussed on here before.

[Hidden in reply to Silver_Fairy]

A previous post with some links

thyroiduk.healthunlocked.co...