first blog i suppose, HELP! 20 years old and had graves disease since i was 14!

first blog i suppose, HELP! 20 years old and had graves disease since i was 14!

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

9 Replies

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  • Hi there thought I would comment, I am having the same issues swinging back and forth, hyper hypo its a nightmare, I really understand how you feel. one minure its graves next is hashi. I also had other contributing factors such as gluten intolarance, low vitamin D, low iron/ ferratin. The consultants are useless as much as the great TSH blood test.

    have your consultant mentioned removal? my advise would be to keep of gluten and ask for other blood test, you really could do with a antibody test TPO and Thyroglobulin, these can be present even though your TSH is normal.

    its sounds like you have Autoimmune Hashimotos, where as you flick from hyper to hypo and you are being medicated for hypo which makes you hyper and then visa versa.

    you are right to feel confused and upset, you flucuations are causing this as well as other possible co factors.

    you definetly need the antibodies checked? as the antibodies could be the cause.

    sorry I cant be more specific, Im of to consult a private endo for answers until I take any medication.

    Go back to the gp and tell them how you feel and have a look at hashimotos ( Autoimmune D)

    I wish you luck, I will no doubt others will comment.

    x

  • My friend mentioned something about autoimmune D. Yeah they suggested that radiation drink when I was about 16, after that appointment i had a new consultant and he said that was the very last resort due to my age and that you can be permanently hypo at a chance cant you if you have it removed? I will take note and mention it at my next appointment! :)

    My mums a coeliac and i was tested with my sister around 2 years ago to see if we suffered the same and we didnt, do you think i should still try and cut it out?

    Also iv had this chest infection/cough for around two months now and no amount of antibiotics is shifting it, and ive been told it could all be linked to my thyroids :(

    Thankyou so much for your reply :)

  • I dont think it will harm you cutting it out, I had a coeliac test and it was normal, however I now I am gluten intolarance, yes you will be permanently be hypothyroid if removed, I have read about Graves and it is Autoimmune related.

    you have definetly got some thyroid issues, your immune system needs building back up, that why you stll have a chest infection. Do you take any vitamins, like vit C? x

  • Welcome to our forum

    I am not surprised you are confused and feeling low as you have been having problems since 14 years old. It must be extremely worrying at such a young age.

    I don't have hyperthyroidism but hypo but this is an excerpt from a doctor who was the President of the British Thyroid Association from an article in Pulse online which may be a bit helpful for you.

    5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

    There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

    But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

    ******

    Someone who has Graves will respond to you with their own experience. Now you are a member you will have to read as much as you can so that you know more than your doctors and are able to ask questions and get proper replies.

    This is a link too:-

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

    .

  • Thankyou so much :) i have been taking carbizamole on and off for many years now, i was once told it just wasnt a good medication to be on for long term but now i think about it they may have meant propananol due to the side effects.

    Thankyou for your help :)

  • Dear jrosebud,

    Welcome to this wonderful site - which has certainly helped my sister and I a lot.

    Like you, my sister also had graves from age 14. She found it really hard to get a diagnosis and suffered terribly (in those days the medical profession were not as clued up re thyroid problems as some are today). In fact in the end she self diagnosed and told her own Dr that she thought she had thyroid problems-she took a magazine article in with her which explained all her symptoms. She had a partial thyroidectomy (which did not resolve the problem as the thyroid grew back and became hyperactive again). She then a total thyroidectomy-again it grew back and so she ended up having radioactive active iodine. The treatments were over a few years and eventually took my sister under active (hypo). She has been on thyroid medication (levothyroxine) for the past 36 years (she is now 53). Although she still has a few ups and downs with her levels of levothyroxine she is stable and leads a good life. It sound like you have "been through the mill" like my sister did. I just wanted to tell you there is light at the end of the tunnel for you. As you say, make notes regarding advice these good people in this forum give you and go to you Dr with a concise list of tests you would like done i.e. Autoimmune Hashimotos as Merissa suggested. Be assertive when you go to the Drs and take some one in with you who will fight your case for you - I know it can be so difficult to stand your ground when you feel unwell yourself.

    I wish you a speedy recovery and keep us informed of your progress!

  • Hi,

    I was diagnosed with Graves some 6 years ago but have been in remission for the past 5. I am sorry to hear that you have been managing delibitating symptoms from such an early age.

    The best advice I could possibly give is do read as much as you can about the disease. I have come to terms with my diagnosis and although I am in remission it has been a long and difficult journey. There is no reason that with the right support from the right Endo and GP your symptoms could not be better managed or at the very least you should by now have enough information about your treatment options to make an informed decision about what is best for you.

    Managing your symptoms needs to happen I am aware of a significant link between long term physical and mental health problems and thyroid disorders. Tap into support from family or close friends, t is difficult to see the wood for the trees when your in the throws of symptoms, therefore enlisting their help makes the load easier to bare and less stressful.

    1. I would recommend writing a letter to your Endo, cc Patient Advisory Liaison Service and your /GP and the GP practice manager. There is an example of a letter on 'Stop the /thyroid Madness' website which I adapted to suit my situation. The letter explains your symptoms and makes clear you are no longer prepared to put up with these symptoms, you have the right to optimise your health with the right support and treatment.

    2. Ask around for recommended Endos, in or around your area, if you need you can go further afield and find one of out area. More importantly check whether the Endo specialises in thyroid disorders and not just diabetes. Once you have found one ask your GP to refer you to that Endo, it is your right to seek a second opinion.

    3. If your GP is supportive, ask for vit D levels, ferritin, vit B12, iron, sex hormones and full thyroid profile to be measured. Never settle for 'its all within range' ask the GP for the results including the ranges and post them on this site, someone will help you understand the results.

    This will determine whether you could benefit from supplementing your thyroid with vitamins etc.

    4. There is much to be had by managing stress and revamping your diet. For me, avoiding gluten for a while helped with on going stomach problems which I had for years. I also introduced fish oils/Omega 3,6 and 9 in addition to vitamin E and my hair has grown back but it is not as thick as it once was. At least I no longer have bald patches and my skin is much improved. My vitamin regime is tailored for my needs and having a friend who has been a complimentary therapist for many years certainly helped me.

    I changed GPs and also researched recommended Endos as it was pointless attending appointments and finding myself highly stressed which impact on my health. I also wrote down questions before attending appointments to avoid leaving consultations feeling deflated and unheard.

    I have an understanding with my consultant now, when I wrote a letter to him I also included a statement about seeking a way forward to manage my Graves symptoms by combining my knowledge and experience of my physical health with his expertise in thyroid disorders. Final point, keep a record of your symptoms and the impact it is having on your life which you can use to inform what questions you can ask during medical consultations.

    Let us know how you get on.

    Lorna

  • jrosebud, this is an article about trends in management of Graves. It might have some useful information for you. You need to educate yourself so you understand what you are dealing with. You will find support here. PR

    medscape.com/viewarticle/78...

  • another useful reference. It can be some work to read this but it is a thorough write up. PR

    thyroidmanager.org/

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