Carbimazole lowered

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Hi,

I wanted some advice about having my carbimazole lowered and some symptoms. I was diagnosed with hyperthyroidism back in May- I started on 20mg then went up to 40mg, I have recently in the last 4 weeks had my dosage lowered back to 20mg and don't have to see the consultant anymore. I'm a bit concerned as I've started to get the sweats again and I'm pretty sure today I experienced some heart palpitations. Do I go straight to my GP or back to the consultant I've just been discharged from? What's the best thing to do?

Thanks in advance,

Heather

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  • Posted

    I was diagnosed with Graves in 2007, started on 10 mg of Methimazole daily and my FT3 and FT4 results immediately came down within the medium to upper levels of the normal range and stayed there for 2 years while my TSH remained at less than 0.001 for those two years.  I always kept copies of my lab results and my own file on them.  It helps when asking questions if you do that as well and post your most recent results so we can better answer your questions.   Though two of my thyroid labs had normalized and that controlled most of my symptoms, my eyes were extremely dry and irritated and I was concerned that my TSH would not rise.  So I started doing research and I found a medical research paper by an Italian endocrinologist who did a study on the use of Regular L-Carnitine in hyperthyroid patients.  The outcome was positive for everyone in the study.  This is because when you are running hyperactive, you lose vitamins, minerals and amino acids (especially carnitine) from your muscles thru urination and replacing this greatly aids in your recovery.  I found out I was deficient in Carnitine, vitamin D and low in Magnesium so added those supplements to my treatment.  My TSH started to rise slightly and I felt better.  I was able to lower my dose of Methimazole to 7.5 mg.  Then I experimented with different types of carnitines and tried Acetyl-L-Carnitine and my TSH just shot right up and my Free T3 and Free T4 fell to the bottom of the normal range.  My  Endo adjusted my Methimazole first to 5 mg and then to 2.5 mg daily and I played around with my supplements dosage.  The Acetyl combined with a low dose of Methimazole was extremely powerful and affected my lab tests extremely quickly so I had to adjust the dose of that frequently.  When I shared my story on other patient Boards and others tried this, they did not keep as close an eye on their results and symptoms and went very HYPO very quickly so I would caution anyone trying this to get more frequent blood testing and have their doc adjust their meds dosage and you adjust your supplements dosage.
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    • Posted

      Hi linda187,

      Someone on an expat forum in Thailand posted a link to this forum for me today as I'm looking for an enlightened endocrinologist in my area (Bangkok) and I found your post on taking a proactive approach which resonated greatly with me - thank you! I used to live in the UK.

      I was diagnosed with hyperthyroidism last month (February 2016) and currently on 20mg/day Methimazole and 20mg/day Inderal. Already feeling some of the side effects: Hair loss, feeling cold, some double vision.

      I'm waiting for the following herbs to come in the post: Bugleweed, Motherwort, Hawthorn and Melissa.

      So, you were diagnosed in 2007... are you in remission now? Congratulations! I've also read about L-Acetyl Carnitine: What was your dosage and how often did you get your blood tests done?

      I had to go to a private lab to get my thyroperoxidate antibodies test done as my current endo looked like she was about to have an aneurysm when I asked about alternatives to radioactive iodine. That's NOT an option for me as I was at close quarters to Hashimoto's through a family friend for years. I had never known her to be well. She was obese with chronic fatigue, depression and a host of other aches and pains. The shape of her face looked like it was melting down her face. I only knew she was a ravishing beauty from photos taken before I met her.

      Test results from 20th March 2016:

       

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    • Posted

      Sorry, I just realised this was someone's thread asking for help for their situation. Do not mean to hijack. 
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    • Posted

      That's okay.  I have just tried to respond to your posting twice and my computer has frozen.  I am home and will try to get back to you in a couple of days when I return to work.
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  • Posted

    Hi.I would go to your GP and explain how you feel and ask for a blood test to get your thyroid levels.He will be able to adjust your Carbimazole as necessary.If you need further treatment he will be able to refer you back to the consultant.Having said that if you feel you have been badly treated by your consultant you could get in touch with the secretary and explain that you are not happy about being discharged and would like a follow up appointment.Hope this is helpful.Let us know how you get on.
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    • Posted

      Hi thanks for the reply, I actually called the GP between my post and now and it was too late to speak to anyone so I spoke to a endocrine nurse at the hospital, she's giving me a call back tomorrow with advice/appointment for a blood test. She's said I may need to have beta blockers or adjust my carbimazole level again and go into a&e if symptoms get worse!
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    • Posted

      Hi.You did the best thing but whatever you decide to do make sure you have a blood test.When you go back for the results ask for a copy for your records and share them on this page.There are many people on here who will be able to help and support you.If you are having worrying palpitations go A&E.Hope all goes well tomorrow
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