Recently diagnosed with graves & labs not improving after 6 weeks of MMI

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Hi friend,

Just found this forum online. I was diagnosed with Graves at the end of February with FT4 2.0 NG/DL and normal FT3. My TSH was < 0.01 uIU/ML. My endo put me on 10 mg methimazole daily, and retest for blood work in three weeks, nothing has changed. My endo increased MMI dosage to 20 mg daily, and I got retested last week. My FT4 dropped to 1.8 NG/DL, still normal FT3, but no improvement on TSH. I'm slowly gaining some weight, but I still feel very tired every day, and nausea in the morning (Doctor said GI disruption is a common side effect of MMI...)

I've been reading online and found out that L-carnitine might be helpful in increasing TSH and regulating TSI. I decide to take Vitamine C 500 mg per day, Vitamin D3 1000 IU per day, and try Acetyl L-Carnitine 500 mg per day. My endo is not very responsible.. sometimes I need to track her down on Instagram...

Any advice?

Thank you!

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  • Posted

    I had a TSH of less than 0.001 while on Methimazole for 2 years.  Then I read about the benefits of hyperthyroid patients using 3,000 mg of Regular L-Carnitine and I tried it.  My TSH rose to 0,12.  Then I added 1000 mg of Acetyl-L-Carnitine as well a 1,000 IU of vitamin D3 and my TSH just shot right up into the normal range.  I had to make a lot of adjustments to supplements, especially the carniitnes, sometimes discontinuing them while my Endo lowered my Methimazole dosage by 2.5 mg each time he made an adjustments. That worked for me.  Eventually I stopped the Acetyl-L-Carnitine and only used it again if my TSH once again dropped.  Though it requires more frequent monitoring and adjusting, I am happy I found something that worked.
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    • Posted

      Hi Linda,

      Do you think this will work if I’m taking Acetyl L Carnitine 500 mg only, and not the regular one?  I’ve read a research paper saying that the L Carnitine can inhibit thyroid hormone going into cells, but I’m not sure why in your case it helped increase TSH. Also do you think it works on you as a specific case or can this generalize to other people as well? 

      B.R,

      Cheryl

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    • Posted

      The Regular L-Carnitine has a lot of carnitine and a little bit of Acetyl in it.  The Acetyl L-carnitine has a little bit of carnitine and a lot of Acetyl in it.  It is the Acetyl that crosses the blood-brain barrier and if taken at the same time as your meds carries everything you are taking with it across the blood-brain barrier.  The carnitine does inhibit thyroid hormone going into cells.  From my experience and the postings I have seen on this Board, Graves patients benefit from Acetyl-L-Carnitine because the antibodies for Graves are attacking the TSH receptors in the pituitary gland, hence the crossing of the blood brain barrier is a good thing, whereas for people with the diagnosis of Hashimoto's the antibodies are attacking the thyroid gland directly and they do better on Regular L-Carnitine,  In fact for Hashi patients, it seems Regular L-Carnitine works better than prescribed meds because while it regulates the amount of thyroid hormone without causing the extremes of high and low that prescribed meds do in these patients.  It would help if you post the ranges for normal for your lab beside your results when you post to this Board because these differ from lab to lab.  In my case, my Free T3 and T4 were in the middle of the normal range while I was on 10 mg of Methimazole and dropped to the bottom of the range while I was taking Acetyl-L-Carnitine,  While I wanted to raise my TSH, I had to monitor very carefully and make a lot of adjustments because I did not want them to drop below range.  Many patients who took the Acetyl after I posted did not know this and did not get more frequent monitoring or adjust their dosages of both meds and acetyl and as a consequence went very hypo very fast,  So I can better answer your question if you post your lab results with the ranges because if your T4 is at bottom of range, you might run the risk of dropping it further,  If not, then 500 mg is a good dose to take and then you need to have blood work done at least 3 weeks later and make adjustments in your meds and Acetyl if you want to keep everything as close to normal as possible.  Also Vitamin D is extremely important to take with this, at least 1,000 IU if not more.

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    • Posted

      Hi Linda,

      Thanks for your reply. The FT4 reference range is 0.76 - 1.46, and mine is 1.8 now. So I’m not worried about dropping below the range. I will try 500 mg of ACL and get retested in three weeks to see if it helps with my TSH. I will report back in 3 weeks.

       I also read that if IgE is high, the antibody level will decrease more slowly, which causes the meds be less effective.. I know that I have hay fever so I’m extremely worried. Do you think getting an immune therapy will help with the GD overall? From googling online, looks like there’s a high chance of replapse of GD, and it’s hard to get pregnant and have kids with normal thyroid level... I’m extremely depressed now..

      B.R,

      Cheryl

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    • Posted

      Cheryl, my disease is in remission and I want to keep it there.  I am euthyroid and my antibodies are undetectable.  So this requires that I am monitored by my Endo at least every 6 months with thyroid tests and in between I ask my General Practitioner to do those tests as well.  Depending on the results, I take action.  If my TSH falls remarkably, (say down to .70) even though it might be within normal range I add back the Acetyl and Regular L-carnitines at lower dosages (i.e. 500 mg per day) on the off days I don't take the Methimazole.  I have not totally gone off Methimazole but am now taking 2.5 mg 3 x a week which really is nothing to me and I have no bad reactions to this dosage.  If you get to this point with your disease, you can switch to PTU as it is safer in pregnancy to take.  Pregnancy can trigger the disease because of the volume of hormones that happen in pregnancy but as I said, the PTU is safe to take in pregnancy and afterwards.  I am past the age of pregnancies but many people on this Board have gotten pregnant and have done quite well.  But this requires that you be a proactive patient.  

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    • Posted

      Hi Linda,  about 13 years ago I was on this merry go round.  Back again.  My T3 was 322 and T4 1.4.  my TSH the problem .21.  My TSH started fluctuating Oct 2017.  Dr wants me on methimazole 10mg but I asked him to start at 5mg.  He asked a lot of questions on what has changed with me. I don't have the symptoms of hyper like I did years ago. I was off the charts in every number of the 6 that tell  the thyroid story.  I am very disappointed.  I feel kinda hypo hyper.  Not Hyper alone.  I have had a weight gain and really don't look forward in being on this med but I think my dosage was much higher.  Not sure. Can you be on this drug and not gain.  Every time I go to the doctor this is an issue to. My blood pressure and pulse is good.  I just have to get this out .  All day I have been sorta upset about this but what can I do?  I just purchased a horse and don't want any more weight on her!  Sounds crazy but since retirement I have been enjoying this and also some good weight training and then this hits me. I know others feel the same way on this side effect.  Anyone have any positive words?  Tips?  Would appreciate .  Thanks for all the info here

      thanks  

      Linda

       

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    • Posted

      Hi Linda,

      I've been on ALC (500 mg) for five days but I feel like I'm more hyper.

      Currently, I have occasional palpitation, right-hand tremor and a dry mouth, which did not present previously. I was wondering perhaps ALC doesn't work for me? Do you think there's hope switching to L-Carnitine? I do think it's more important to increase my TSH, which means that my FT4 will lower if TSH is increased to normal range. 

      B.R,

      Cheryl

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    • Posted

      I think the fact that Acetyl is combined with a higher dose of Methimazole might account for some of your symptoms because when you add Acetyl, 20 mg works like 30 or 40 mg.of Methimazole.  The highest I was on was 10 mg of Methimazole and when i added Acetyl and my TSH rose, my doc began to lower my meds dosage.  He would not do that until he saw some change in my TSH.  I did have similar symptoms as you occasionally when I was playing around with the addition of Acetyl.  I did however, have Propranolol if I had palpitations and I only had to take half a tablet when that happened.  I did start on the Regular L-Carnitine and it only raised my TSH from 0 to 0.12.  You might want to try switching to Regular while your Methimazole dosage is 20 mg.  I did start on 3,000 mg of the Regular based on a research paper I read and that only raised my TSH to 0.12.  So Regular L-Carnitine has a lot of Carnitine and a little bit of Acetyl in it and Acetyl has a lot of Acetyl and a little bit of Carnitine in it.  It is the Acetyl that carries your meds and other supplements across the blood-brain barrier into the cell nucleus.  The carnitine acts like Methimazole in that it blocks the excessive thyroid hormone whereas the Acetyl makes your meds work more effectively so you won't need as high a dosage.  If you are going to use these supplements, you need to be monitored more frequently and make adjustments in your supplements dosage and ask your doc to adjust your meds dosage in order not to go hypo.  Also paying attention to your body and symptoms as you are doing is essential.

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    • Posted

      Hi Linda,

      I was thinking perhaps I'm not Carnitine deficient which is why it has increased my metabolism and worsen the hyper symptom. I'll discontinue this for now but will continue the vitamin D and C until the blood test for carnitine level is done. 

      Thanks for all the info!

      Cheryl

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  • Posted

    Hi Cheryl,

    In my case (GD), after about 1 month taking MMI, my T4, T3 were reversed to below and at bottom of the range (became pre-hypo) but TSH remained extremely low... So I started taking 500mg ALC daily (along with 5 mg MMI) and TSH started rising... for 2 months, my TSH was back to normal (and T4, T3 at mid-level) and I was in euthyroid (it took 3 months taking MMI and 2 months ALC). Also, I have already changed my diet before taking ATM. Just like to share my case history (last year) for your reference.

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    • Posted

      Hi Mike,

      Thanks for sharing your story. That is very inspiring. How are you doing right now? Are you still in remission? Have you discovered what triggered your GD?

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    • Posted

      Hi Cheryl, Welcome! I hope you are encouraged at least a bit. I am doing pretty well now (6 months in euthyroid), but not in remission, i.e., still taking MMI 2.5mg every other day and ALC 500mg every alternate day. Autoimmune dietary protocol almost fully complied; vitamins, mineral restoring; herbs added...  Big lifestyle change undergoing... Most troubling symptoms are gone now, but restoring physical strength (e.g., back to routine exercise activity) will be a long way to go. I believe the cause of my GD case was an EBV infection and the trigger could most likely be on stress that could cause digestive disorder (e.g., leaky gut) and from there, autoimmune disorders could thus start. I think after taking ALC for 3 weeks, your TSH number would rise noticeably, substantially if not back to normal.  Don't get depressed, but relax and patience is the way to heal.

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    • Posted

      Hi Mike,

      Thanks for your reply. I was wondering if the ACL helped you lose some weight too. If you're hyper already, and the L-Carnitine might increase your metabolism (as it is used as a weight-loss supplement), wouldn't that make you more hyper?

      B.R,

      Cheryl

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    • Posted

      Hi Cheryl, All I know about the LC and ALC effect on hyperthyroidism is that they could blunt patients' thyroid level and reduce or rid hyper symptoms... ALC never caused me weight loss (if not weight gain) as b4 taking it, I was already in hyper and lost a bit weight.  As for normal healthy people, how do they affect people's fitness result is not much in my research. But I did hear that people (hyperthyroidism patients?) taking ALC for a long time period may suffer cardio problem as you mentioned... "increase metabolism" issue? Sorry, if you get confused. Me too, a little. 

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    • Posted

      Hi Mike,

      Thanks for your patient reply.  I’m on ALC for two days now and have not felt any difference yet. I’m also eating the Brazil but for selenium. Haven’t got the cardio problem yet, but will report back in three weeks and see if the ALC works on me. Thanks again. 

      B.R,

      Cheryl 

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    • Posted

      Hi Cheryl,

      In my case, 3 weeks of ALC (and MMI) caused my TSH rise noticeably, but not reach the normal level. So far I have been on ALC for ~5 months and no cardio issue YET (finger crossed). I think you don't have to worry about cardio... Just take easy and rest, lot of rest like some people said 12 hours of rest a day (sleep not counted)!  It's hard to calm down when getting anxious... but you must remind yourself and try all the time.

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    • Posted

      Hi Mike,

      I’ve been reading about links between Graves and Type 1 diabetes and I’m extremely worried because looks like people with one autoimmune disease will get another.. My mom had a sub clinical type 2 diabetes in her 50s, and everyday I wake up I just feel like things are out of control. I have absolutely no idea if any day I will get diabetes or not, which will make my life even more miserable.... 

      Plz advise, 

      Cheryl

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    • Posted

      Hi Cheryl,

      Sorry, I have no knowledge about the link between diabetes and GD autoimmune disorders. The only thing I can advise is that you may want to focus on paying attention to your GD condition and don't be carried away by other possibly related illnesses that in any way are not happening... It'll just make you more stressful and anxious and make your hyper condition worse. By the way, do you consider changing your diet? (or you already did so)  It's definitely a good idea of looking into the autoimmune dietary protocol (AIP) for GD patients like us.

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    • Posted

      Hi Mike, how important is diet w/gd? Or hyperactive thyroid?  I’ve heard cutbout sugar & carbs

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    • Posted

      Hi Mike,

      Yes I’m changing my diet. Adding more fruits and veggie as well as selenium. Cutting down on eating out. I’ve read something about the gluten free diet, but I don’t have celiac disease, so not sure if that will help me. I’m very worried & depressed right now, not sure if it’s the meds sending me to hypo, or I’m actually depressed. After putting on 3kg after starting methimazole, I actually lost 0.5 kg since last week, which got me extremely worried as I should be putting on weight under the med. But my endo told me that my weight will fluctuate a lot while she’s controlling my thyroid.. idk.. 

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    • Posted

      Hi Cheryl,

      When I said "change diet", it doesn't just mean "add healthy foods or cut eating out junk foods". The AIP or other diet protocols are all characterized as "food restriction" or "food ban", i.e., eating "right" foods instead of just "healthy" foods. There are many "healthy" foods that are restricted by AIP, e.g., dairy, egg, soy, grains/seeds, nuts, and nightshade plants (tomato, eggplant, all peppers, potato, etc.) Not to mention: alcohol, coffee, cigarettes are banned. Gluten is not just the enemy of celiac disease patients, it's the poison to all autoimmune disorders including GD. In fact, my very first change of diet was getting gluten free and it was very painful to comply: GF bread was/is costly out of my financial limit. Later, it's found that all GF bread you can buy are just only "gluten-free", but also containing other ingredients restricted by AIP, e.g., egg, dairy, gum, grains, etc. So in the end, I ventured to make my own GF bread with AIP successfully meeting my food need, my taste, and financial limit. Now I have also learned to make my own water kefir and bone broth. I think you may want to dig more into this.

      Regarding your weight issue, may I ask what is your normal weight before your hyper started, or what is the weight loss after hyper and before starting taking MMI? Is that 3kg gain after med equal to the previous weight loss? If so, you are back to normal weight and +- 0.5kg will be of no worry. I believe your endo's opinion about weight fluctuation is pretty valid. Try to understand worries and self-pressing give no help to but escalate your hyper condition.  Best wish.

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    • Posted

      Hi Mike, 

      Wow... it’s amazing that you’re making your own GF bread!! I’ll have to look into the AIP, sounds like harsh with no grain and no diary.. Kefir and yogurts are my favorites.  I didn’t lose weight in GD. My symptoms are trivial perhaps due to T3 is still normal. No heart racing or insomnia. A little shakiness on my right hand. I lost 2 kg the first two weeks starting Methimazole 10 mg, then put back 3 kg after dosage was adjusted to 20 mg.. I guess I was just worried that if I’m not gaining weight the meds was not working... used to be very physically active, but since I’m on the meds, I feel tired everyday and can’t carry on routine training.. guess that contributes to anxiety.. sad really want to feel normal again soon... 

      B.R,

      Cheryl

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    • Posted

      Hi Cheryl,

      I think I understand the troublesome you are encountering: the physical training and exercise issue. In my case, I used to gym work-out and swimming 3, 4 times a week b4 hacked by GD. During the treatment and recovering period, I too tried going back to the old physical routine. Sadly to say that most times of exercise made me exhausted and feel tired sagging all energy afterward and no benefit to GD healing, if no bad escalating effect. Then I laid off and eased out physical activity a bit and saw my body and mind greatly refreshed and recovered from the tense struggling of heavy exercise, and so from the terrible GD. I don't think it is the side effect of med or supplement that costs you the trouble of exercise routine, but your exercise has caused intervention with your healing GD. Again I think you need more rest than exercise during recovery. You can expect med, supplement, and diet will work to improve your condition, but don't expect heavy exercise will help healing GD. -- just my experience and opinion.

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