Graves disease

[suzie2004]

I am being treated for overactive thyroid & Graves disease am on Carbimazole & Propranalol I have lost one & half stones in the past 10 weeks since I was diagnosed. Am much better but will my weight start to pile on again when I come off the medication. Over the past 5 years I gained 4 stones & felt really ill my body felt like a lump of lead & am scared I will go back to feeling like that even though my bloods were normal at the time

[Heloise]

Hi suzie, I don't know if anyone can foresee what will happen later. If you become hypothyroid I suppose you will go on thyroid hormone. Are you at a normal weight now or still overweight? Some people stay on Carbimazole for two years, are they taking blood tests to see if you need to taper off. Do you have any test results now?

[suzie2004 in reply to Heloise]

They have cut down on the carbimazole but still to keep taking propranolol & I am back to see endocronlogist at beginning of January.

[purple64]

I lost about 14kg and have been on Carbimazole since April this year. So far I have only put on about 6kg. Have to say I do get a bit paranoid about putting the weight back on. Try to ear healthy and be as active as your body will allow. Some days it's just not possible to do anything but rest. Just go with it if you can.

[suzie2004 in reply to purple64]

Thank You for months I felt so ill & weak but medication seems to be starting to help now

[purple64 in reply to suzie2004]

Glad it's starting to work it does take a while. I expect all being well they will reduce the dose. Make sure you get your blood tested every 4 weeks.

[suzie2004 in reply to purple64]

Thank You its helpful to get the advice from others & know we are dealing with the same thing

[Hidden]

What mg of Carbimazole have you been taking since you first diagnosed hyperthyroidism? I have hyperthyroidism for five months and now taking 5mg of Carbimazole. I did lost lot of weight too. When I first take Carbimazole, I started to feel better and gained some weight. Doctor said that the medicine make me hungry and gained some. It’s safe taking Carbimazole long as you can.

[suzie2004 in reply to Hidden]

Carbimazole is helping a lot with the propranolol and you are right it does make you hungry. I see the endocrinologist again in January but piling weight on again is beyond a joke.

[Hidden in reply to suzie2004]

I’m very glad Carbimazole and Propranolol are helping and making you feel better. That’s worth it. As long as you take blood test every 6 weeks to check it out. That’s good you will see your Endocrinologist in January for updates. Gaining weight is hard and I know how you feel. Many others went through the same as we do. Stay well.

[suzie2004]

Thank You so much for all the information I will read through it all. As you say medication is so hard to take and you never know what it actually does to your body.

[Arab]

Hi there,

I’m three years down the line now, after having a hyperthyroid event. Heart racing , uncontrolled palpitations shortness of breath.

I actually have Hashimotos, but had an overactive peak that was severe. The hospital diagnosed Graves without checking the antibodies, but a subsequent private test done has come back as borderline negative. In any event, I was on the same path as you.

It took 3 days in hospital to stabilise, and intravenous beta blockers.

I was sent home on 60 mg of Carbimazole, beta blockers and steroids.

To be honest, by that time, I’d been ill for so long - even before I was hospitalised, that I couldn’t think straight anyway. I did as I was told, took the medication and the thyroid event stettled down.

My advice to you would be:

Take the medication given. You’ve obviously reached a point in your condition that warrants medical intervention, and the meds are very effective. You may not be able to think straight or absorb advice, so the best course is to rest and recuperate as far as possible

Don’t worry about weight gain. You will find that once you stop taking Carbimazole and beta blockers, you will be able to lose the weight again albeit slowly.

Once you have stabilised properly, start educating yourself as to how you can manage Hyperthyroidism/Graves or Hashimotos.

It doesn’t always mean that you need to be coerced into having radioactive iodine (I 131) or have your thyroid removed. There are other effective ways of managing your condition.

Lastly, through belonging to Thyroid UK, and reading and taking the advice presented here, I’ve been able to remain in remission so far.

I have had peaks and troughs as we all do, but have been able to level them out myself by keeping an eye on my vitamins and minerals, and keeping the important ones optimal. This includes taking iodine/iodide occasionally.

Stay close to this site, and learn as much as you can, and the very best of luck for your future health improvement. We’re all slightly different, so be prepared for trail and error, but the rewards are good enough to give you your health back

Arab. 🙂

[suzie2004 in reply to Arab]

Thank You so much for replying to me and the advice given its nice to know what others go through and how they deal & cope with it. I have suffered with chronic depression & anxiety most of my life and sometimes wonder if Graves disease has been the contributing factor as I feel so physically ill year in & year out. I am on this site most days and trying to get as much information & advice as I can to try and see what else I can do to help myself.

[Arab in reply to suzie2004]

Hi Suzie,

I can completely identify with that. With hindsight (a wonderful thing!) I’m certain that I’d been living with this condition for almost 25years before it was ‘diagnosed’.

I had depression and crippling anxiety, emotionally over sensitive, light sensitivity, high blood pressure, rapid pulse, the list goes on.

I can’t tell you how many times I’d asked for the thyroid function to be checked (I didn’t know anything about antibodies or autoimmune disorders at that time), but my mother, sister and grandmother had all been treated for overactive thyroid disorders.

Coming through the treatment, and feeling well, no anxiety, no depression, is like coming into the calm after a long storm. I sincerely hope you reach the same point.

Be patient, and don’t worry any more. The most important thing is that you know what’s wrong now, and it looks as though you’re following the same path as I have. Read all you can. Stick to this site as I did and follow the advice given. It’s invaluable.

Always feel free to ask questions on here. It’s a forum of people who have common ailments, and between us all, we can improve our health with help.

Arab. 🙂

[suzie2004 in reply to Arab]

Thank You So Much it makes such a difference when you can get help from people who have gone through it or going through the same illness. I am so glad you are much better and there is a light at the end of the tunnel. I shall be on this site most days and gain all the advice I can.