overactive tyhroid

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For the last 3 or 4 months ive been feeling really ill stomach hot flushes hot and cold sweats headaches etc then ive had blood test after bloodtest and finally got diagnosed with overactive thyroid my doctor said she will write to a specialist to see wat treatment is best for me ie meds ,radioactive or surgery but because im 41 this year it may be surgery ive got another bloodtest on friday to check for antibodies i just feel so ill cant eat all im doing is going toilet all the time for weeing and opening my bowels all the time and eating makes me want to go more its really getting me down waiting to find out wants going to happen so any help would be nice many thanks for listening

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  • Posted

    Hi debbie56921, when I was diagnosed with hyperthyroidism I was put on anti-thyroid drugs immediately. My GP called an endocrinologist to confirm the dose (based on my thyroid values). To feel better you need to get your thyroxine levels down. 

    Are you taking any medication right now? Do you happen to have your blood test results? 

    Other than that I would recommend resting as much as possible. While being hyperthyroid your metabolism runs at a high rate causing frequent bowel movements etc. Nevertheless, it is important to eat well. Eat enough protein to avoid muscle wasting and consider taking supplements like L-Carnitine. L-Carnitine has been shown to limit the damaging effects of high thyroxine levels. More info e.g. in this post on the same forum:

    https://patient.info/forums/discuss/l-carnitine-and-grave-s-62121

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  • Posted

    Hi, while,your thyroid is overstimulated,miss releasing loads of adrenaline affects into your system. I found swimming and exercise extremely debilitating , and my heart under. Carbimazole was my first stage of help with regular blood tests with the Endocrinolist , make sure you see one and get all,options explained, my GP had no idea what to do x

    my levels are still high so I've been offered RAI or a Thyroidectomy , I've chosen surgery as if the RAI doesn't work you sometimes need a 2nd dose,and/ or surgery anyway!!

    right now, slow down, rest, avoid stress and places like Arcades and Alton towers. Anything that overstimulates will make you feel so ill. Eat often , small nutritious meals, I also took Vit B12 supplements .

    i really hope you start to feel better soon, but there's no magic pill or wand I'm afraid X it's a difficult ride, and you just have to do the recommended things, Ho,d tight and ride it out .

    all the best xx

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  • Posted

    I hope you have your appointment soon.  When I was being diagnosed, it took time for the specialist to complete all my tests but she immediately put me on a beta blocker called Propranolol because I had a resting heart rate of 100 to 130.  So that's something your doc can do if you ask.  I was diagnosed in 2007 at the age of 60 so your age should have nothing to do with the treatment chosen for you.  Because I work in the medical field, I knew something about the treatments.  I knew I definitely would not agree to Radiation therapy or surgery because I knew there were other options.  So the more you take responsibility to learn about your disease, the more empowered you will become.  Once I was confirmed with a diagnosis of Graves disease, I was given the thyroid hormone blocking drug called Methimazole at a dose of 10 mg a day.  That controlled the excessive thyroid hormones but did nothing to lower the antibodies that were attacking my gland.  So the main tests for following your disease are TSH (thyroid stimulating hormone), Free T3 the active thyroid hormone and Free T4 the hormone that gets converted to the active hormone in your body.  Always get and keep a copy of any and all tests or letters that are done on you and keep your own file.  So while my disease addressed the overproduction of thyroid hormone for two years, I found it did not address the TSH which remained essentially at 0 for those two years until I did more research and found out about supplements that would support my recovery.   My Endocrinologist and most doctors do not know about these so you will have to take responsibility to learn about it.  The first supplement i took was regular L-Carnitine at a dose of 3,000 to 4,000 mg per day.  There was an Italian research study that positively identified that hyperthyroid patients benefit a lot from taking this.  I actually wanted to know my Carnitine levels so I got tested and I was deficient in this amino acid as are most hyperthyroid patients because we lose a lot of vitamins, minerals and amino acids when we are running hyperthyroid.  I found I was deficient in Vitamin D which I learned was extremely important to healthy thyroid functioning and I was low in Magnesium.  If you start taking these supplements even before you get treated with meds (which usually is the first line of treatment), it will improve your symptoms.  I took Vitamin D3 gel caps.  I had tried vit D pills before and they weren't as good.  I got the Carnitine by prescription because I had to take that high a dose and it was prescribed as a liquid which made it easier to take.  I have done well with this.  All my levels, including TSH are normal now and have been since I added supplements in 2009 along with an extremely low dose of Methimazole (2.5 mg 3 to 4 times a week).

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    • Posted

      My Graves is still causing awful thyrotoxicosis , I've tried the supplements but it seems my thyroid is too far gone to be reasoned with. I'm envious you got yours under control with time meds and supplements, but not everyone is as lucky or well enough?

      ive battled for 15 months using lots of advice, but I'm so tired  , and I'll I think it's time to accept surgery and save energy for getting better ?

      i admire you , wish I had been able to sort mine x

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    • Posted

      Hi Jan

      I agree with you. I amunable to take carbimazole and L Carnitine etc due to cardiac arrhythymias . My private endo identified this and recommended RAI. Sadly the NHS have done nothing about this. I feel at the end of my tether with all this plus muscle pains and  stiffness.

      ​I am going to demand the RAI and chance going hypo, it is easier to manage than hyper .I am taking Vit D3 supplements.

      Take care

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    • Posted

      Jan ... how has your Graves' disease been treated .. ?

      have you taken Carbimazole ?

      how do you take your B12 

      mx🌹

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    • Posted

      I take 30 mg a day of carbimazole , was 40 but my joints seine do painfully. The meds affect your bone marrow as well as  Lover function, which is why the LFT s in regular blood tests. I also had heart meds for the palpitations but I couldn't to,erase them. I take vitaminD ,  B12  and B complex one a day, from the health shop. Because B vitamins, as well as D / bones are affected. 

      My endocrinologist has been brilliant, respecting my intense wish to avoid surgery, but now he fears the negative affects of medical treatment on my system, and says this will kill me . 

      So im backed against a wall here. 

      I want to get well, I choose surgery and a new battle with getting correct thyroxine dosage after.

      the hyper symptoms are killing me, hypo may make me feel like death, but another day to fight suits me ok.

      some days I rally, the next I hurt, I'm dizzy, I feel bloated and puffy, I'm uber anxious and I don't enjoy anything.

      this isn't living either, it's struggling .

      i know people who've had the surgery and regretted it, more have said it's an uphill climb but now they feel better. 

      I can't consider RAI , I don't like the risks, surgery is awful but the more tolerable of the two for me , by choice.

      it feels good to make a decision for my treatment, I've been in limbo for so long.

      i can't go on like this anymore.

      im scared, but resolute xx

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    • Posted

      sorry, didn't proof read, meant joints seized painfully, and Liver function can be affected

      please make sure you work with your endo, they should be on your side.

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    • Posted

      seems like you've been through it too Luvvie ... please believe me i have been there .. and i remember only too well how dreadful Graves makes you feel....  and you have come to a conclusion.  I feel very sad that it has made you feel so dreadful.

      I responded very well indeed to Carbimazole , to my great surprise , as i have been very intolerant to most other drugs  i've ever had to take.

      Once you have made up your mind about surgery and you have tried all else ..then i guess you know which road to take.

      some of the things i've taken to become Euthyroid (normal )  have replaced the vital minerals, vitamins and nutrients that i used up whilst being in a state of HYPERthyroid with Graves.

      B12  'must be melted under the tongue for example (sublingual) as it goes to to blood  and not your Stomach 

      Magnesium deficiency caused unbelievable problems in the body and should be replaced if deficient ...

      things like Zinc and Copper should be replaced if low

      D3 also needs replacing 

       ..... it should be taken with K2 to make calcium work properrly

      if you decide to wait a while before surgery i could let you know the ones  i took to get better after Carbimazole treatment.

      but if you don't ... then i wish you the very best of Luck Luvvie ..

      Always  stay alert to any knowledge that may come your way...by 

      reading , Googling or just sharing experiences on here ... most of us have 

      had a hellish time ... but many of us are well agai...  and you will be to , i'm sure ,  whatever way you go .

      Luv Mx🌹

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    • Posted

      Hi Madge, thanks so much for responding X ok, I'm only just being referred for surgery and so it might be a while , huh?!  I'd love to hear more from you re. Supplements and advice.....

      i feel upsy Downsy , and jittery at night. I've had enough.

      any advice PLEASE , especially as you're coming out the other side of the illness?

      wight gain advice too....and energy !?

      thanks xxx 

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      Jan .ll Please see my reply to Jane...below...  i should have sent to you too.. as i thot it might be of interest..  weight gain was strange for me ... i did NOT lose weight with my Graves' disease and i was told that was normal too..

      i think i put a few pounds on with carbimazole.. but i was also told that it makes you feel better and because of that increases your appetite 

      ... and therefore ...guess what ?    you eat more ... and it's for THAT reason 

      that the weight goes On  ... so it's our own fault really.

      after Carbimazole and having started my supplementing i just stopped  eating  sugar... not entirely ....but definately No Rubbish !     so i've lost what i put on and would be happy to lose another few pounds .. but ill do that by stopping the sugar .

      ps.  i feel so much better now than i have for  a long time ..l never recognised that  i was becomming ill  until i was very ill indeed.

      and i really associate with how you feel...i was sooo bad i wanted to die ..... now i can hardly believe i felt that way.

      ... and i hope you'll feel like that too ... one day very soon.

      luv m x 🌹

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    • Posted

      Hi Linda just wanted to ask u that I have ordered l carntine regular 500 mg is that OK to take one a day I mean is this enough mg ? Thanks samy
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    • Posted

      The research project used 3,000 to 4,000 mg a day, that is six 500 mg tablets/capsules.  However, it is always a good idea to take one 500 mg and see how you feel on it.  If okay, then add more.  Because the dose was that high, I got it by prescription in a liquid form which made it easier to take.
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