changing my own dose

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I have tried and tried to reach my doctor regarding having hives with my tapazole dose. I am currently taking 20 mg daily. I'd like to try 10mg in the am and 10mg in the pm to see if the hives die down. I don't want to take PTU because of the liver failure./transplant issues that come with it. Any ideas? suggestions?

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  • Posted

    My endo was upset when I changed my own meds. But you're actually staying on the same dose just breaking it up. Is your tapzole ER? (Extended release).

    If you can't reach your doctor you Southold walk in and speak with the receptionist and ask for the doctors nurse and explain things to her.

    Good luck!

    Sandi

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  • Posted

    It's really difficult to offer advice when I don't have the information your doctor has, i.e. your last lab values, any other meds you are on etc.  For myself, I found that adding supplements like 3,000 to 4,000 mg of L-Carnitine, vitamin D 1,000 to 5,000 IU and Magnesium 200 mg together with my meds dosage brought my levels down enough so my doc could lower the dosage.  You could also take an antihistamine for the hives.  Both meds can cauise liver damage at high dosages however, I always had liver function tests every time my labs were drawn and at my dosage, liver function was never a problem.  This is probably true for PTU as well, that it relates to dosage.  Taking the supplements has been the only way for me to lower dosage or I would still be on the dose I started on today.

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    • Posted

      What is your dosage? Do I need to get a doctors advice on the L-carnitine, vitamin d and mag pills? My dosage is 20mg daily and is supposedly a low dose according to the doctor.
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  • Posted

    I did get hives at high dosage or when my body senses overdosing... At 20mg for 1 month i got hives.  My endo was very forceful and wanted me to do RAI.  I did my research and Im just overdosing.  I told my endo lets try to lower my methimazole before taking drastic surgeries or taking PTU.  I tooked 10mg per day and I felt better.  I think I got better faster or TSH got better at 5mg everyday with REgular L carnitine and Vit D(since most hyper are deficient with it).  Currently taking 5mg every other day with Lcar and VitD and after 3-4 months my TSH to 1.1 to 2.24.  3 weeks ago Im getting that itchyness on my hand and about to go into hives.  So i went into lab and got blood drawn. TSH at 2.24 and I asked to lower my dosage agin.  So now it's 5mg every other day then skip 1 day.  so from 20mg per week to  15mg per week. my advise get blood drawn, asked to  lower dosage, then limit iodize salts and seafoods for now until TSH is stabilize.. I tend to swing from hyper to hypo symptoms faster than others.

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    • Posted

      Also, You said between 3-4000mg of L carnitine, 1000-5000 of vit d and mag 200mg...what exact dosages are you taking ? or how did you settle on the dose your on now with these supplements?
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    • Posted

      it's actually Linda who informed me all about this supplements needed.  I also did asked my endo to check my VITD, carnitine levels just to get an info on how much to take.  Endo ordered VitD and magnesium blood work. She doesn't want to do carnitine, but I did manage my GP to order carnitine test. Results on carnitine came and both my endo and GP doesn't want to do comment and get into carnitine issues my total carnitine and free are OK but ester carnitine very low.  Im taking multi vitamin supplements no iodine + Twinlab Mega L-Carnitine - 500 mg - 90 Tablets+ Vit D 1000mg per day(im borderline low on bloodtest) + methimazole dose....

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      Dosages were mentioned in the Research article on L-Carnitine by the Italian endocrinologist and the dosages of the others were in other literature I researched on supplements.  By the way, once my levels improved, especially my TSH, I had to adjust the carntines levels frequently and left my doc to adjust the meds dosage but I took responsibility for adjusting carnitine levels based on my labs.  Currently I take. 2.5 lmg methimazole 4 days a week and 500 mg of Regular L-Carnitine on the off days I don't take the methimazole.  I still take 1,000 IU of vit D and 200 mg of Magnesium.  I got all my supplement levels measured before I started taking anything.  I was deficient in carnitine initially but improved after taking it as a supplement and lowered my dosages accordingly.  I was low on Magnesium and deficient in vit D and the dosages I currently take keep me stable within range on these values.

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    • Posted

      Splitting the dose makes sense and gives your body the same amount.  I am sure if you take supplements, your values will begin to change and your doc will want to lower dosages.  However, what I found when that happened was that I had to lower slowly and not by too much at a time.  My inidital Endo dropped my dosage from 10 to 5 mg once daily and I had a rebound of symptoms after 2 weeks.  So my next Endo only decreased by no more than 2.5 mg at a time and that seems to keep my body more stable.
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  • Posted

    The maximum dose I was on was 10 mg and I have not heard of anyone getting hives at this dosage.  However, I have heard of others who get hives at dosages like yours.  Your doctor will know nothing about supplements because physicians are not trained in this.  I have emailed you links to the research study done on L-Carnitine by an Italian endocrinologist.  Despite his research and publications in valid medical jhournals, most endocrinologists have not picked up on this but you can print the journal articles and discuss this with your doc.  I have also included sites where you can get more information on supplements for thyroid diseases.
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    • Posted

      Hi Linda would you send me those links too?my endo has no idea of how L Carnitine would be effective in Graves disease .but he did caution me after reading a recent article suggesting it may trigger radiovascular disease(?).

      Would like to look into itbefore gettibg a second opinion.

      thank you for all your very useful info.-smile

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    • Posted

      I have read that part also about it may trigger cardiovascular disease.  But those are for healthy individuals.  Some people take it for helping them lose weight while working out to get leaner. something about a fat burner.  But those are for healthy individuals. Get your carnitine level tested, free total and ester carnitine.  Just to make sure if you need em as I did that's why, I'm taking 500mg REgular L car.  But both my endo and GP didn't want to comment or give me advise on those.  It seems that it's too complicated to explain to patients... Need more studies to be done.  Take it with open mind that it might have complications just like any other meds at your descretion.  Key is don't take too much of it.  Try 500mg every other day 

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