Can't raise TSH

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Hi All

I have one hot nodule that's overproducing hormone, causing my low TSH. I don't have the usual hyper symptoms, other than dizziness.  I was put on 10mg of Methimazole in January and by March my T3 & T4 normalized. With the help of supplements (all recommended here) and mostly L-Carnitine, my TSH went from 0.005 to 0.015.  But as my T's dropped I started feeling hypo: very cold and so tired, so I cut the dose to 5 every other day. Just had another blood test and my T's are perfect:

T3 Range: 76 - 181  Mine is 101  (about the same)

T4 Range: .71 - 185  Mine is 1.10  (it crept up from .87 last test)

TSH Range: .49 - 4.70  Mine is .03  (last was .015)  

I know my TSH is low but did it double?  I had to stop the L-Carnitine about a month ago because of gastrointestinal issues.  After process of elimination of other supplements, I found it's definitely the L-Carnitine 3grms daily that was causing loose bowels. So ... I just started taking 1 gram liquid L-Carnitine again because i know I need it. I don't eat meat and I feel better physically on L-Carnitine, other than diahhrea. sad  I figure I'll test the waters with a low dose. 

Meantime, my Endo wants me to take even more Methimazole, even though I told her it makes me feel sick. Dizzy, cold, tired and something I never had ... very low mood. Lethargic and kind of depressed. Limiting the Methimazole makes me feel better again. She said a high dose will raise my TSH in a few weeks, which I'm not sure is true. I know others who have struggled with low TSH for a year or two. 

I'm thinking of taking ALC. I have it in my cabinet but am a bit anxious to take it. I have a history of occular migraine. As ALC crosses the brain barrier, could it cause migraines? I know others have had huge success with ACL. What dose did you start at and did you have any adverse reactions such as headache or dizziness or anything related to CNS? 

I'm taking every supplement suggested on the forum.  

Hot nodules are a pita because most of the time they don't resolve, so I hate the idea of possibly having to be on Methimazole for the rest of my life, which is why I'm shooting for the lowest dose possible. The irony is I don't feel bad other than dizziness. At the onset of hyperthyroidism I had rubbery legs and faint spells. These are gone thank goodness, so I know I need to keep my T's in range. 

Thanks!!

Jaye 

2 likes, 17 replies

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17 Replies

  • Posted

    Hi jayvalle,

    My TSH was undetectable for over a year so my endo "threatened" to increase my meds, which I thought was counterproductive since I was feeling great with normal range FreeTs so I took a chance and tried ALC. I started with 500mgs daily and TSH immediately went up within 4 weeks, from 0.01 to 0.26. FreeTs naturally went down so I lowered my meds to balance it out.

    It worked so well so I got nervous so I started skipping my ALC to every other day. My subsequent lab work came back TSH 0.016 and FreeTs went back up. It was evident to me that ALC was affecting my labs so I went back to daily dosage of 500mgs, now taking only 2.5mgs tapazole (methamazole) and my most recent lab (just got done yesterday) came back TSH 0.46 (in range) and FreeTs in range.

    I will continue to take 500mgs and slowly taper my meds to see if I can start making TSH on my own. My endo is thankfully flexible and allows me to play with my meds since I can check my lab results online.

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    • Posted

      Hi Cecelo.

      I'm so happy ALC worked so well for you!!  And that you're balancing out and able to cut meds. That's my goal. I'm definitely staying on L-Carnitine for sure. I was thinking about taking a small piece of ALC to see if it agrees with me but still unsure. 

      I was on armour thyroid for 12 years prior to going hyper from the nodule so I don't think my body knows it has to make hormone. My nodule is slowly shrinking so I'm hoping it will secrete less and less hormone and I'll eventually go back to normal. It would be amazing to be off Methimazole.

      Thank you for the info :-) Good luck with your dosages!!  I love to hear good news. 

      hugs

      Jaye xo

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    • Posted

      Thank you and good luck to you too! I have the same goal as you, remission and no meds! I still have a way to go but so far ALC seems to be helping but I know it's not something I'd use long term. If u do end up trying, let us know how it goes

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  • Posted

    Hi JayValle, I started on 500mg every second day. I was diagnosed hyperthyroid in early March this year at which time my TSH was still in normal limits (1.33 low limit 0.4). On my second blood test after starting carbimazole 10mg x3 a day my bloods showed a TSH of 0.06 (low limit 0.4), my T4 wasn't much above normal to start, but I had quite unpleasant symptoms, my T4 normalised quickly but my symptoms persisted so I was kept on carbimazole at a lowered dose. My TSH rose to 0.65 but I still had symptoms so I asked my doctor if I could try acetyl L-carnitine which he looked in to (he hadn't heard of it) and said yes but to be careful. A month after taking ALC my TSH hit 1.73 and my doc asked me to stop taking it as if it continued to rise I would probably become hypo, a week later I did get symptoms of hypo and had my carbimazole ceased pending blood tests. My latest results show my TSH has dropped a bit to 0.89 and my T4 is around 13 (limits 9-19) I see my doc at work tomorrow and hope he lets me stay off meds and maybe take one ALC every third day. As far as I know I didn't have any side effects from either carbimazole or ALC but the ALC seemed to have a much more profound effect on my lab results than carbimazole. It is almost 4 weeks since I stopped all meds except a calcium/vitamin D suppliment and so far so good. Make sure you discuss ALC with your doctor before you take it but I had no CNS problems with it. Good luck andvtake care 😊

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    • Posted

      Hi Jenifer

      Thank you for the info. I'm happy you're doing well. I'm inching closer to breaking off a piece of ALC to test the waters. I can't take a high dose of Methimazole as it makes me drag and foggy headed, so I want to lift that TSH and keep tapering the med. I've read so many great things about carnitine and the overall health benefits for all kinds of health issues. I don't eat meat so I know I need the supplement, especially being hyper. Have you ever tried regular L-Carnitine or did you go straight to ALC? 

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    • Posted

      Hi JayValle, I used acetyl L-carnitine under medical supervision ie I discussed it with my doctor. I can't comment on l-carnitine as I have never used it but the acetyl L -carnitine made a noticable difference to my TSH and in case anyone tries to suggest that it may have been the Vitamin D and calcium I started at the same time I can report that after stopping the ALC but not the vit D/ calcium my levels have started to revert dramatically. I am going to discuss recommencing the ACL a couple of times a week if my levels don't stabilise. Good luck and take care.

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  • Posted

    Hi Jaye

    You said you have been taking lots of supps. If magnesium is one of them which it should be, be careful which one you take because some can cause diarrhea. Good luck.

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    • Posted

      Hi Judith. I take Magnesium Oxide 400 mg. and Magnesium potassium aspertate 100 mg. They've never caused bowel problems in the past. Do you have a suggestion of a better Magnesium other than oxide?  I have to take the magnesium potassium asperate in combination with B2 and Ubiqiunol co q 10 for migraine prevention each afternoon. I take the bulk of my other supplements in the morning and just restarted a tablespoon of L-Carnitine after a few week pause. I'm going to keep taking the carnitine regardless of the bowel issues as I feel so much better on it and I believe it did help to begin to lift my TSH. Maybe it's a combination of the type of magnesium I'm taking that triggers the carnitine diahhrea? 

      Thank you :-)

       

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    • Posted

      I have heard this about Magnesium Oxide which is why I asked.

      "Magnesium Oxide

      Also referred to as “Magnesia”, magnesium oxide is commonly used therapeutically as a laxative and relief for acid reflux. This type of magnesium shows high levels of concentration, but poor levels of bioavailability (only 4%)."

      It would be worth your while doing some Mg research to see if you can find another that has less of a laxative affect for you. Otherwise if you are taking it with others supps you may be losing the benefits of taking them.

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    • Posted

      I'll give Glycinate a try. I always had the opposite problem, (constipation) and had used Magnesium Citrate but quit that when I started taking other supps and Methimazole.

      I have to say ... 2 days back on L-Carnitine and I feel BETTER!!  I'm even fighting a summer head cold and I have energy and a better mood. I'm hanging in there at 1 gram and maybe will begin 2 grams again every other day. I think my body was missing the carnitine. I find I respond quickly to meds and supps which is why I hope to taper Methimazole as soon as possible. 

      Thank you Madge and Judith !!  

      hugs xo

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    • Posted

      Well done Jay .. sorry about the cold but it sounds like you're really getting there now Luvvie ...

      keep your chin up and look 👀 Ahead ...

      Luv mx🌹

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    • Posted

      Two great minds think alike Judith

      Just shows you doesn't it ... how one supplement that works for one ...can have quite a different effect on another ...

      I suffered so many years ifrom childhood with constipation and

      Thot that would be me for life

      But I think acidophilus and flax seed have changed my life ..

      ... that and the supplements I take

      What a subject .. but I think when you take care of your bowels and gut ... they reward you with good health ...

      Take care Luvvie

      Mx🌹

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    • Posted

      Oh , how right you are Judith

      .....I hate to think where I'd be today If I hadn't found this site .

      B12 was the first thing I discovered and from there I researched Day and night to put together a regime to help me become well again

      Graves had taken away my jest for life .. I now have it back again ... but it's imperative to share it with fellow sufferers as I remember only too well how much I wanted just to lie down .... and drift away ...

      Empowerment ... that's the word that inspired me to be brave enough to stop asking doctors for help .... and to ' do it for myself '

      As I was getting nowhere ...

      Be brave ...and it's okay to break the rules a bit too ....

      Love M x🌹

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