Graves disease

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Hi Linda,

I was diagnosed with graves 2 months ago. Started with 5 mg, then 10 mg and now 20 mg of Methimazole. I dont understand why when I took the 5 mg MMI, the symptoms dissapeared however my lab was still abnormal. That is why my dose is increasing. As my dose increased, I felt worse symptoms. Now I know that there are some herbal remedies, can I take buggleweed, motherswort, and lemon balm tea together with 20 mg methimazole? How about regular L- cartinine, can I take it together with methimazole too?

Is there any interactions?

My endo offered me RAI. I am still considering it as my last resorce to cure my graves. My Thyroid antibody is 3 (high). I dont know what I should do. I feel anxious at times and could not sleep sometimes. Please advise. Thank you

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  • Posted

    Hi Vera,

    It would be helpful if you could post all your thyroid test results along with the ranges for normal beside your results.  You are entitled to a copy of all your lab tests.  It is unusual for a doc to raise your dosage like that.  I am wondering whether he/she is doing that because your TSH has not risen?  if so, in my opinion that is a wrong approach and will not get the results you want, namely raising your TSH.  I don't know whether you can take Bugleweed with the methimazole.  The other two (Motherwort and Lemon Balm) should be okay to take and will help calm you.  I took Regular L-Carnitine and then added Acetyl-L-Carnitine to my Medication dose and when I did, my doc was able to lower my Methimazole dosage.  Bugleweed, Regular Carnitine and Acetyl-L-Carnitine all act as thyroid hormone blockers.  The Acetyl especially helps to raise your TSH because the Acetyl part crosses the blood-brain barrier and takes anything else you are taking with it, like the Methimazole into the cell nucleus.  Vitamin D also is an extremely important vitamin for good thyroid function and most of us are deficient in this so taking 1,000 IU per day should help.  I prefer the gel caps in Vitamin D rather than pills.  I can't say for sure without knowing your exact lab results but if your doc was raising your Methimazole dosage to increase your TSH level, that is why you are feeling awful.  I was started on a dose of 10 mg and this normalized my Free T3 and Free T4 but my TSH remained at less than 0.001 for 2 years although I took the 10 mg of methimazole for that period.  My TSH only rose when I added the carnitine supplements, especially Acetyl-L-Carntiine and then my doc lowered my Methimazole dosage by 2.5 mg at a time as my TSH improved.  You have to be very careful with taking the Acetyl though because it will make you very hypo very quickly if you don't get more frequent lab tests and make dosage adjustments in both your meds and your supplements as your levels improve.  I wanted to avoid RAI or surgery and I have been successful at normalizing my results with the use of supplements plus low dose meds.  I think you can too but you need to always know your lab results.  You also need to know whether you have Graves Disease, Graves plus Hashimoto's disease or Hashimoto's disease alone.  If you have Hashimoto's disease the supplements are far superior in controlling your levels because Hashimoto patients are extremely sensitive to prescribed meds, whether they be thyroid hormone blocking drugs like Methimazole or thyroid hormone replacement drugs like Levothyroxine.  See if you can get your lab results and let me know what they are.

    Take care.

    Linda

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    • Posted

      Hi Linda,

      My TSH level is 0.14 (dropped from 0.24) normal range 0.50-4.50

      My total T4 is 9.8 normal range 4.5-12.0

      T3 uptake 34 normal range 22-35

      Free T4 index is 3.3 normal range 1.4-3.8

      So everything is in the normal range

      Except my TSH

      Maybe I should take only 10 mg instead of 20 mg

       And how much dose should I take for regular L- carnitine? When should I take it?

      I had a thyroid uptake last month, 

      It said that it is thyroiditis

      However, my doctor believe that I have a pure graves

      So, I do not know where to start with the herbal, should I take the motherwort, lemon balm and l carnitine together with methimazole?

      I am scared there will be interactions between them. 

      Should I take 500 mg regular L-carnitine?

      Thank you,

      Vera

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    • Posted

      Hi Linda. I am going "off piste "here but I believe you have a great deal of knowledge about the thyroid.I have Hashimotos.One son has Graves( and 3 other auto immune conditions). My daughter is taking supplements for below par thyroid function ( through a functional doctor). My 31 year old son (Aspergers) suffers from OCD (as do I-but he is worse than me, mine is quite mild), anxiety and depression-on meds for these.He is also tired all the time and doesn't do a great deal apart from work and sleep.I appreciate that his depression could be to blame for the tiredness but because of the strong family history of thyroid issues, I would like to rule this out as the possible cause of some of his issues.Are you able to tell me what blood tests he would need to have done, to positively rule out any thyroid involvement with the way that he is feeling.I know I will have to pay to have this done but just want to be absolutely sure that whatever blood tests we have done, will give a difinitive answer.I am in UK. He lives in France, near Swiss border.Thanks for reading and hope you can give some guidance.

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    • Posted

      Generally doctors will initially test for TSH, Free T3 and Free T4 initially.  Some will only test TSH and Free T4.  If there are no abnormalities in these tests, they won't do any further tests.  If one or more is abnormal, they will then test for antibodies (for Graves they test TBII or TRAb and anti-TPO, and they will do a radioactive thyroid uptake test.  For Hashimoto's, they test TGAb and anti-TPO.  As well they do a physical exam of the neck area to look for nodules or cysts.

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  • Posted

    Hi Vera

    I don't know what your labs were before these that your doc chose to increase your meds dosage.  My Free T3 and T4 remained at mid range when I was first diagnosed and treated with 10 mg of Methimazole but my TSH remained at less than 0.001 for two years until I added supplements.  In my case, I read a research article on the benefits of using L-Carnitine in hyperthyroid patients.  The suggested dosage of Regular L-Carnitine in this study was 3,000 to 4,000 mg per day so that is what I started on.  It raised my TSH from less than 0.001 to 0.12.  Didn't go much higher than that until I added Acetyl-L-Carnitine, 1,000 mg to my Regular L-carnitine and meds dosage.  I tended to add supplements one at a time to see how I felt on them and to see how they affected me and my labs.  In my case, once my TSH began to rise, my doc cut my 10 mg dose in half and two weeks later, I got a rebound of symptoms so for me I learned that I had to lower that dosage no more than 2.5 mg at a time.  Actually I managed my supplements dosage adjusting it and my Endo would recommend the dosage for the Methimazole and thankfully he only decreased not more than 2.5 mg at a time.  Your Free T4 is at the high normal range.  I know that for me I could take the Regular L-Carnitine even at the level of 3,000 mg a day and had no ill effects from it and didn't go hypo with it but as soon as I added the Acetyl-L-Carnitine, it was extremely sensitive in raising my TSH extremely fast and lowered my Free T3 and T4 to the bottom of the range.  I know you can take the Regular L-Carnitine with Methimazole, I am not sure about the Motherwort and Lemon balm although as these are calming herbs, I don't think you would have a problem with it.  I can email you a link to a site that gives a lot of information about the herbs.  I know the Acetyl-L-Carnitine you really have to be careful with because a lot of people have gone hypo with it very fast because they did not stay on top of more frequent blood tests and adjustments in order to keep that from happening.  I think starting Regular L-Carntiine at a dose of 500 mg is a good idea to see how you feel on it and how it affects you.  In fact, that is what I did with all my supplements - that is added them one at a time and monitored how I felt on them.  For me dropping the Methimazole dose too fast was disastrous as far as getting a kickback of symptoms.  Don't know how it would affect others.  I let my Endo handle that dose based on my results and i just adjusted supplements.  I have used a few different brands of carnitines and any I used were all fine.  I took all my meds and supplements at one time together and that worked well for me.

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    • Posted

      Hi linda,

      Thank you for the information. I just started with 20 mg methimazole 3 days ago, but I feel a  bad headache and nausea. I dont know if that is because of the increased meds or something else. I order nature’s way 500 mg L-Carnitine, it will be coming tomorrow. Kind of scared to try this because my body is very sensitive to new meds.

      I am still feeling dizzy and fatigue. Is this normal to feel like this after 7 weeks taking medications?

      Do you have increased antibodies in your blood?

      Can increased antibodies be lowered with some therapy?

      Thank you,

      Vera

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    • Posted

      I would think it would be normal to feel the way you do if your medication has been increased.  The highest amount I was on was 10 mg and I felt better when this dosage was slowly decreased.  I had no negative side effects with the Regular L-Carnitine even at a dose of 3,000 mg daily.  However, I did have side effects with the Acetyl-L-Carnitine as it affects lab results rather quickly.  I had increased hearing sensitivity, & more palpitations with the Acetyl.  However, I was willing to tolerate this because I wanted my TSH to get well into the normal range and it did.  Also I had high antibodies at the time of diagnosis which became non-detectable after my TSH normalized with the use of all the supplements I took, especially the Acetyl-L-Carnitine.

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    • Posted

      Hi Linda,

      How long did you get your weight back?

      I feel headache and nausea after eating. 

      I think my body can not cope with the new dose.  Do you think I should continue taking 20 mg?

      How did you feel when you first having this disease? 

      Thank you

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  • Posted

    My weight did not fluctuate until recently when I was off work for 2 weeks or so as I had to pack to move.  Then i lost weight.  Prior to my having this disease, I worked with an abusive co-worker and I felt a lot of anxiety until finally I told my boss I would not continue to work with her.  However, my symptoms started then.  I had palpitations, restless leg syndrome, generally a speeded up metabolism, eye problems (very dry eyes).  I was lucky my labs were not too much over the normal range and it only took 10 mg to immediately normalize my Free T3 and T4 to the middle of the normal range.  I did have itchy welts across my forehead.  I understand a lot of people have hives when they take this med.  I was able to treat this with Betamethasone scalp lotion and it quickly went away.  I felt a lot better when my TSH raised even a little and my doc could lower my meds dose even by 2.5 mg.  Then as I added all the supplements I took, especially Acetyl L-carnitine and my TSH rose quickly, my doc would lower my meds by 2.5 mg at a time as my lab results improved.  While I think your meds dose may be too high for you, I strongly urge you to discuss the meds dosage with your doc and let him/her adjust this dosage while you deal with your supplements..  
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    • Posted

      Mind this: not every doctor would adjust ATM dose with patients who take supplements and/or herbs (some even consider patients taking supplement beyond their knowledge offensive).
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    • Posted

      I can honestly say if I had only depended upon my Endo's knowledge, I would still be sitting here with a TSH of less than 0.001 and would have been pushed to have RAI.  His knowledge should be about the meds if he prescribed them and I always work with him and let him handle that.  If I want to take supplements and I take responsibility for educating myself and him about them, then he has nothing he can say about it, especially when they result in a more positive result.  They even cooperated when I asked for testing of various vitamins and amino acids.  Sure they don't like it at first because they are not used to it but honestly they came around for me and now it is a partnership.

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    • Posted

      Ok, everybody should at least try asking and working with doctors, but don't panic or desperate if doctors won't react like Linda's doctor -- I think this is a usual case now a days... sad

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    • Posted

      Hi Linda,

      I sometimes have a brain fog, being slow of thinking and forget things at times. Is that normal? Did you ever have that symptoms before? How did you feel when the TSH remained at <0.001? For two years? Did you deal with all the symptoms for those 2 years?

      Thank you

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