hyperthyroid flare up

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hi guys i am new to this forum but heres a lil background history of how i am affected by hyperthyroidism.

i was dagnosed with subclinical hyperthyroidism a couple of years ago. my TSH has aways been low 0.03 but with normal ranges for T3 and T4. my endo wanted to just monitor me repeat bloods every couple of months etc. i started to feel really bad so endo decided to put me on carbimazole 5mg. after 2 weeks of taking it i was having really bad side effects; excrucuating joint pain where i could barely walk so i had no choice but to stop i actually felt better off the meds! now i am at the point where my TSH is still hardly detectable and my T4 has risen slighly above normal range and i feel awful chronic fatigue, terrible brain fog, heart palpitations, joint pain to name a few. started taking some supplements about 2 weeks ago i notice i have good days and bad days. GP prescribed me popranalol but im too scared to take it plus dont actually think its necessary at this point in time. he also discussed putting me on PTU instead of carbimazole also have doubts about that too. has anyone had any bad experiences taking PTU? or have any good remedies or supplements i can take that will help???

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21 Replies

  • Posted

    Regular L-Carnitine 3,000 to 4,000 mg per day.  There was a research paper done on this that showed that hyperthyroid patients benefit from this.  As well, hyperthyroid patients tend to be deficient in vitamin D so vit D, 1,000 IU per day, Magnesium 200 mg per day, and Omega 3 1,000 mg helps with decreasing inflammation.  I took all this with a very low dose of methimazole and it helped me get all my labs normalized including TSH.   If I were you, I would also like to have antibody tests and know those results.
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    • Posted

      thanks linda im definitely going to purchase those supplements you suggested thank you for that. if you dont mind me asking how long were you taking medication for? and did you have any bad side effects? i have had antibody tests before a long time ago though so cant remember the exact results i also had the iodine uptake scan which came back as suggestive of graves.
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    • Posted

      I was put on 10 mg of Methimazole and took that for two years.  My FT3 and FT4 normalized right away but my TSH remained at less than 0.001 for two years until I read the paper and added the Carnitine and was able to lower my Methimazole dosage because the Carnitine helped  my TSH to rise.  I also took Acetyl-L-Carnitine which really caused my TSH to rise but I would not recommend that for you as it can cause a very quick HYPOthyroidism.  It is too sensitive and the research was done with the Regular so that's what I would recommend hyperthyroid patients should start on.  I am currently on 2.5 lmg of Methimazole 4 days a week and take one 500 mg capsule of Regular L-Carnitine on my off days along with the other supplements mentioned.  I don't take Acetyl-L-Carnitine any more.  My labs are all in the normal range right where I want them on the scale.

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    • Posted

      so glad to hear all your results are in the normal ranges. im at the point i have to do something now. been reading up on the l carnitine cant believe it helped boost your TSH mines been ranging from 0.001-0.003 for years i can actually tell when it drops as i feel rubbish. i definitely think i need that in my life lol thanks for all the great advice much appreciated. Also think i have to admit defeat and finally go on meds tremors have started recently and blood sugar levels aren't stable.

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    • Posted

      You might have to take a very low dose of a beta blocker like Propranolol.  Your doc can decide.  See how you feel with the supplements.  For the blood sugar, you can take Chromium and Cinammon capsules.  Also follow the glycemic index for foods  to eat and foods to avoid.  My brother, a diabetic, measured his blood sugars one hour before and two hours after meals and he found  he could not eat certain foods even the dietitions recommended as they raised his blood sugar too high and too fast.  So he avoids all wheat, and all cereals, some fruits, and he has excellent blood sugar control.
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    • Posted

      wow you have given me so much food for thought ive not noticed a pattern at the moment in terms of the foods to see if there are any triggers but i need to try and find a link somewhere. my docs did actually give me propranolol been holding out taking it but im gona have to. just waiting for my endo appointment atm which is going to take weeks seeing as i had to be re-referred. in the meantime im definitely going to take the supplements. im already taking folic acid because my levels are low. i just need a massive boost just feel a bit depleted right now. i wasnt even aware of the glycemic index i feel like you have really educated me tonight theres just so much to think about during the recovery process.
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  • Posted

    Hi Sorry to hear all this sounds similar to what happened to me without the treatment.

    ​Did the dr check your antibodies at all?

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  • Posted

    yes checked antibodies tbh i cannot remember the results @delirious but i know it was suggestive of graves. how did you manage to control your symptoms?
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    • Posted

      Hi True

      ​I have not commenced any treatment as crbimazole  is contraindicated. I ammstill suffering. Habve twenty nodules on my goitre as well. Cannot tolerate L Carnitine as it made me having lots of small seizures and chest pain resulting in calling the ambulance out.

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    • Posted

      oh no im sorry to hear that. ive been reccommended L Carnitine but i didnt realise the effects could be so bad im a bit sceptical now. are you taking any other supplements or medication that have helped you?
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    • Posted

      Yes I take magnesium, sub lingual Vit B12 1,000 micrograms, Adcal D3 as I am vitamin D deficient.

      Borom, sometimes Omega 3.

      Having said that he recommended rai treatmnt but nothing has been done about it.

      My endo said that L Carnitine has not been proven to be helpful .

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    • Posted

      thanks delirious im already taking B complex, vit c and folic acid which im deficient in might add those to my list as well. just feel exhausted ALL the time need some energy.
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    • Posted

      I will send you the medical journal articles that I read that say it was very helpful.  These are articles by doctors in his field who did valid research and published them in valid medical journals..  But I cannot send them until I get my computer back at work which is in for repairs.  Show him the articles.  As a patient, you are the one who has to make a decision about your body, not him and you are the one who is going to have to do research on the subject of your disease and make an informed decision about what is best for you.
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    • Posted

      I believe delirious has a medical condition of seizures that makes her condition worse if she takes L-Carnitine.  My boss specializes in genetic metabolic diseases and treats some of his patient's diseases with it and told me it wouldn't hurt me and it did not.

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    • Posted

      oh right ok thats more understandable now i was a bit hesitant to try it if it could cause seizures. like i said im willing to try anything but thanks for clarifying that because it did put me off.
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    • Posted

      True

      I have PM you about the adverse reations to L Carnitine other name is levocarnitine.

      NB Apparently according to the experts and the extensive research that I myself have personally carried out in relation to this supplement the adverse reactions can occurr in anyone irrespective of any conditions that person is or may be suffering from.

      This is very important especially when the adverse reactions include a fast heart beat, seizures, stomach cramps and a whole lot more nasties.

      SInce my experience with this supplement I never take anything unless I thoroughly research it and check with a pharmacist and doctors.

      Take care.x

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    • Posted

      linda 87

      I have enclosed my reply to clarify the situation to True.

      I can also scan the ecgs done by paramedics as a result of taking a very small dose of L Carnitine.

      Take care.

      True

      I have PM you about the adverse reations to L Carnitine other name is levocarnitine.

      NB Apparently according to the experts and the extensive research that I myself have personally carried out in relation to this supplement the adverse reactions can occurr in anyone irrespective of any conditions that person is or may be suffering from.

      This is very important especially when the adverse reactions include a fast heart beat, seizures, stomach cramps and a whole lot more nasties.

      SInce my experience with this supplement I never take anything unless I thoroughly research it and check with a pharmacist and doctors.

      Take care.x

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    • Posted

      true

      I was simpy answering your question as to whether I takemany supplements etc. I do but under medical supervision including blood profiles for anaemia, Vit D deficiency, electrolyte deficiencies, .

      I would strongly advise you to get a comprehensive blood screenng profile done to establish baselines and if any supplementation is required.

      You really need a comprehensiv blood panel into the issue of Vitamin B12 and B6.

      Have you heard of the ernicious anaemia association?

      ​I would advise getting your GP to do a full blood profile.

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    • Posted

      delirious

      i have not heard of the EAA but will look into it. i definitely think im going to get my GP to do a full blood profile ive been meaning to actually do this to be honest. thank you for all your great advice

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