Hyperthyroidism and Carbimazole Tablets

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My husband has hyperthyroidism and toxic nodular Goitre for about 17 years, which has not given him any trouble until recently. After having a urine test for levels of Iodine, it was shown he was low. Thus he started on a course of Lugol's 2% which he gradually worked up over a period of a few months until having what is recommended by Dr David Brownstein, a wholistic MD from      America.

His troubles began when our Herbalist gave us a bottle of Lugol's 15% and after taking the higher dose for three days, palpitations, high heart rate, aching muscles, nervousness and anxiety set in. It seems that the Iodine caused a thyroid storm and he ended up in hospital. He was prescribed Carbimazole 5mg 2x2 daily and a beta block, Propranolol 10mg 2x2 daily. He stopped taking the Iodine immediately believing this caused his trouble which later we found out indeed did. If one has a toxic nodular Goitre they must not take Iodine! 

Within a couple of days after taking the Carbimazole he had had a rash all over his abdomen and intense itching. His local GP halved the dose of Carbimazole. Those sensations seemed to go but then aching muscles and painful joints along with a sore back set in! These are obviously more side affects from this drug. 

His endo, after finding out he was on Iodine was most upset with him for seeking out alternative measures to help him, after seeing her yesterday.. She was rude, arrogant and obnoxious, causing him even more stress than this thyroid was already causing him. The upshot is, he will not be going back to see her.

Our dilemma is, we are going to Europe in a week and a half for almost 7 weeks, and we are unsure what to do regarding this medication. Whether to go completely off it, or lower the dose to 2.5 mg, as I read others have done in this forum. Does anybody know if it is ok to go off it completely and how long the joint aches and pains take to subside, and is it safe to go off it completely. The local GP  doesn't seem to know much about thyroids! 

We have tried for months to stabalise my husband large goitre in both sides of his neck, which sometimes swells up and sometimes almost looks quite normal, but it seems that we have only made it worse! We are concerned about him having another thyroid storm when away, especially in flight as it takes 25 hours to reach Rome. 

He is on L Carnitine which an Integrative MD we just saw last week told him to add to his vitamin, mineral and herbal supplements. It is just hard to know whether he should stop the endos drugs and wing it, or just cut down and keep taking it. It is not exciting looking forward to aches and pains day in and day out though on our holidays. The wholistic doctor seemed to think that by my husband suffering the rash, itching, and muscle and joint pains, that he should not be taking it, but the endo says he should! Who are we meant to listen to? 

If anybody has had any experience with this dilemma and has any  suggestions regarding which way to go, we would be most appreciative as we leave very soon, all being well. Thank you. 

 

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  • Posted

    For myself, I found that slowly decreasing dosages of meds was better than dropping too much too fast.  I had hive-like breakouts on my forehead and I swabbed it with Betamethasone scalp lotion on a cotton pad and it quickly subsided.  I also was on the carnitine but before I started it, I got my Total Carnitine and Free Carnitine tested and was deficient as are most hyperthyroid patients.  I also was deficient in vitamin D and Magnesium. So its a good idea when you are supplementing to test for those levels first.
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    • Posted

      Thank you Linda. A Nutritionist put my husband on L Carnitine but he has never been tested for it. His wholistic MD said to always take it to protect his heart and slow down the thyroid antibodies. But, as you say most are deficient who have hyperthyroidism. Even though he is not deficient in D or Magnesium, he takes these daily anyway to keep topped up. We are just not sure whether to stop the Carbimazole totally, even if it is slowly, or whether he should stay on a low dose while overseas if it prevents thyroid storms, or whether he should stop it in view of the painful muscles and joints. This is the quandary! I guess it is a hard one! 
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  • Posted

    I agree with Linda. Slowly reducing medication was also best for me. I started at 10 mg Methimazole and after a couple of months felt lethargic and achy. I cut to 5 mg and felt better for a couple months then had the same issue, but accompanied by some depression, so I cut to 2.5 mg which I'm still on and feel fine. 

    Like your husband, I also have thyroid nodules. One became overactive causing me to become hyperactive. I take a lot of supplements including L Carnitine. My TSH finally started to rise, although still below normal. But I feel pretty good. 

    Good luck. I hope your husband feels better soon. 

     

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    • Posted

      Thank you for your reply Jay. My husband took himself off both the beta block and the Carbimazole two days ago. I just hope that considering he was only on the 20mg daily dose for 3 days, then after the itching and rash, on 10 mg daily for only for several more days, (2 weeks all up) then going cold turkey will not have any or much negative affects on him.  The muscle and joint pain was keeping him awake at night and giving him even more stress! So he really is between a rock and a hard place! 
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  • Posted

    I think the advice from Jay and Linda is excellent .. and you are very aware of your husbands condition ..  msybe it's  just a kick back from my Graves  ... but is it possible that you could cancel or postpone this holiday .. to allow your husband a little more time to settle his recent traumatic  health situation .... which must have been terrifying for him .. and you.

    Having suffered badly and extremely myself I know I could never have contemplated such a 

    Journey as I was much to ill to have done so ... maybe after He has planned his   Medical regime .. he could then enjoy this wonderful trip with you .. feeling stronger and in NO PAIN  

    Best of luck to you both ..

    LUV MX🌹

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    • Posted

      Thanks Madge. I think is not possible to cancel now as everything for the almost seven weeks has been booked and we would loose so much money which we cannot afford to lose! We already had to cancel our plans to go to America because our sons graduation from completing his PhD in Medicine came up right when we were due to go. So now instead we are going to spend five weeks in Italy, all accomodation booked, go on an Adriatic Cruise, paid for, and spend a week in London with our son. So, it is not like we can just cancel all of that. So far so good with my husband, as of the last 2 days from coming off only 2 weeks of Carbimazole and beta blockers. I think his pains in his joints has lessened and so far his heart rate and blood pressure have remained good. I know it is all trial and error, but he refuses to take that drug again! He is eating a very healthy diet, in fact always has, and with lots of supplements, which I hope will aid him now. His cousin in Rome who we will be seeing two days after arriving, is an endocrinologist. But they all have the same view. Radiate it or cut it out, as he told Ray this when we were there two years ago. The allopathic and imperial will always be at war! We do prefer the latter! I read how bungleweed, I think it is called is a real help in situations like this. Has anybody heard about it here? 
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  • Posted

    Hi jennifer94645, while it is never an option to be rude, and I fully understand that your husband does not want to see her again, I think that the endocrinologist was rightly upset and probably shocked that a patient of hers got himself into a very critical situation (not to forget the active role your herbalist played.) 

    Our daily requirement of Iodine is 150 micrograms or 0.15 milligrams. 

    Lugol's 2% solution contains 0.84 milligrams Iodine per drop which is approximately 5.6 times the recommended daily allowance. Lugol's 15% contains 6.63 milligrams Iodine per drop which is approximately 44 times the daily allowance of Iodine. 

    It is a much safer option to use sea salt or lightly iodised salt. Since UK is an iodine deficient region I personally do use iodised salt containing 20 micrograms Iodine per gram of salt. (It is always best to check because other brands of salt may contain up to 70 micrograms per gram of salt.) 

    I have been on a holiday shortly after being diagnosed with thyrotoxicosis due to Graves'. It was no pleasure trip. I just went since the flights were already booked. My advice would be to take a printout of your prescription and also of your latest blood test with you. That and also enough Carbimazole and Propranolol for the whole trip. 

    Good luck and hopefully your husband will recover before your holiday.

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  • Posted

    Bugleweed 

    Motherwort and

    Lemon Balm 

    Were  three of the things that certainly helped me so very much !

    I bought them in liquid tincture form ....And mixed them in equal proportions  and filled a brown glass bottle  with the mix of three ingredients ..  ( Amazon online ) 

    Anytime I felt anxious or High ... I would take 2.....3   teaspoonsful Or a little more even .. if I felt so bad . ... and often through the day ....the feeling of relief was very quick  .

    It's a shame the timing of the holiday is so bad for your husbands condition .. I do hope he feels better ...  very soon 

    Mx🌹

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    • Posted

      Great information! Thank you so much Madge. We will certainly look into it. Can you take the potion many times a day, if needed? Are there any contrainindications with them? There may not be time to get them from Amazon, but we will enquire at the Health Shop as they have a Herbalist there. Thank you for your well wishes. 💞

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    • Posted

      Amazon will do next day delivery 

      Herbalists in health shop may not be acquainted  with this mixture ... and so won't be of much help !

      Google natural solutions for Graves .. where many  educated people in the subject will verify the success of using the treatment 

      Mx🌹

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    • Posted

      Madge, I looked up the prices on Amazon and I also rang a local Herbalist who works for a Heath Food Store. She was very familiar with it. She knows how good it is in case of feeling hyper. She will make up the three plus another herb in the mixture which is good for palpitations. 100 ml for AU $25.00. So that seems cheaper than what I could find for one of them on the internet. What do you think? 
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    • Posted

      Jennifer 

      Due to Dawns comments I will now leave this discussion..

      I hope your husband remains well and that he can enjoy his holiday but would strongly suggest he sees his Doctor as soon as he can before leaving 

      Best of Luck

      Mx🌹

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    • Posted

      Thank you for your help, Madge. We are great believers in the natural healing ability of herbs. I will let you know when we get back how he goes! 🌺

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