Drifting towards Hypo after Hyper?

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Hi - four weeks ago I was diagnosed as hyper with a T4 reading of 64.8 and TSH < 0.05. My endo started me on 60mg carbrimazol and I also started taking 1500mg of acetyl-l-carnitine after reading posts on the forum.

I had another blood test done on Monday this week and rang my gp's for the results this morning - my TSH is 0.05 [0.4 - 4.5] and T4 is 14.6 [10 - 24] I didn't manage to get the T3 reading as I had to cut the phone call short on my way to work. I don't see my endo for a week and am a bit concerned about the T4 dropping below 10 if I carry on with 60mg of carbrimazol. I found the following website which summarises that:

- low TSH, normal T4, normal T3 = Mild (subclinical) hyperthyroidism

- low TSH, high/normal T4, high/normal T3 = hyperthyroidism

As i don't have the T3 reading (I'll ring again tomorrrow morning!) - does the low TSH still indicate hyperthyrodism - am I courting a rise in T4 if I reduce the carbrimazol to 40mg or 20mg?

 

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  • Posted

    Hi, I would definitely look at reducing the Carbimazole and speaking with your doctor. I went hypo after just being on 40mg of carb for too long with no blood tests.  The consultant put me on block and replace to keep me stable, so introduced 100mg levethyorixine.    I think TSH takes a long time to get back to normal.  However I will let others confirm. 
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  • Posted

    Hi gurmuntrude,

    How are you feeling on this amount of Carbimazole and Acetyl-L-Carnitine? Your T4 is right in the middle of the range right where you would want it to be and I will bet your T3 is also there. What I found for myself is that you have to be very careful and lower your dosages and adjust quite often. 1,500 mg of Acetyl is quite high which is good to start with because your values were so high and TSH so low but my experience was that even after I lowered my dose of Acetyl my TSH kept climbing and my T3 and T4 dropped to the lower part of the normal range on 5 mg of Tapazole. Others on the Board had similar results as you in one month but when you keep taking that high a dose, the Carbimazole is very sensitive to the Acetyl and even when I lowered my dose to 225 mg of Acetyl it was difficult to keep my results where I wanted them. So I would recommend that you lower your dose of Acetyl to 500 mg and when you see your Endo next week, ask him if you can lower your dose of Carbimazole and keep taking blood tests at least monthly and adjusting. If was difficult for me to find Acetyl in 225 mg capsules but I did. However, I would not go higher. Your TSH will continue to rise with the both combined even with a low dose of both Acetyl and Carbimazole. My T3 and T4 were in the middle of the range when I started and my TSH was 0.12. Eventhough I lowered my dose to 500 mg my TSH kept climbing and eventually the T3 and T4 lowered. So it is a balancing act for sure but you have to keep on top of it. If you have to, you can even stop the Acetyl or switch to regular L-Carnitine. The Regular L-Carnitine will not boost the TSH as much (like mine went from less than 0.01 to 0.05 and did not rise further even on a high dose of Regular). By keeping the Acetyl low and adjusting the other or even discontinuing the Carnitines altogether when your values are where you want them OR by switching to regular L-Carnitine I think you will find you will be where you want with your values. The fact that your T4 dropped from 64.8 to the middle of the normal range would not have happend if you were on Carbimazole alone. At least that is what I am seeing with others and your TSH would not have risen in the slightest. But you need to keep on top of it. I wish the docs would do clinical research with this but the FDA in America does not want them to as they would lose a substantial amount of money if they did. So we have to be our own guinea pigs and find out what works best for us. If at any time, you do not like how you feel on the Acetyl or you feel your results are going out of the range you want, you can safely stop it immediately. Thank you for the update and keep us in touch with what is happening with you. Your postings will help others. Oh and I have a feeling if you stay on this course, you will find your antibodies disappearing also.

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    • Posted

      Hi Linda - thanks for the sound of advice - you're a font of knowledge! I'll cut the Acetyl to 500mg from today, however they're only available in 500mg with the brand I use so I'll have a look around to see if I can get a 225mg version. I'm quite surprised how quickly the T4 has dropped in about 3.5 weeks and I'm sure it's the combination of Acetyl and Carbrimazol that have worked together. I feel ok with 60mg of carbrimazol - luckily I've only had one side effect a couple of weeks ago which was quite horrendous diffuse pain all over my back when ever I moved but that settled after 48 hours. I'll also find out the results of the blood tests the endo did when I first saw him as he was going to check for antibody's etc. I've printed off a synposis of Benvenga's research paper which I'm going to take along to see if has any opinion on it.
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    • Posted

      You could take regular L-Carnitine, 500 mg with each of the other doses of Carb as it does not raise TSH as much as Acetyl and it replaces the carnitine lost in muscles with hyperthyroidism.
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  • Posted

    What Linda says is right.  You need to consider how you are feeling as you go along.  

    I am in the US where Tapazole/Methimazole (generic) (MMI) is usually prescribed instead of Carbimazole (CBM).  The CBM is a precurser to MMI so CBM is slower acting and probably slower leaving the system, and MMI takes about 2 months to leave the body.

    See what your Endo says.  I would think he would decrease the CBM to 40mg.  Do you take 5 mg tablets? 3 in the morning and 3 at night?

    How is your resting heart rate?

    The thing I notice about your lab reports is that it seems like they are measuring your total T4 instead of the free T4.  I have been to 4 different Endocrinologists so far and they all tested for FT4 and half tested the FT3 and half the TT3.  The T3 is present in such small amounts that lab reports for the free T3 are sometimes seen as being less accurate.  Also, always get a paper copy of the lab report if you can.  Actually, if the office has a patient portal where you can get the information online, it is even better.

    My TSH was low for a long time when my FT4 and FT3 were in range. I hadn't heard about Carnitine until I had been off the MMI for a long time.  I was able to go off the MMI in December 2012, started thyroid supplements in June 2013 had a blood test with low TSH in November/December and had to go off the supplements earlier this year.

    I felt awful on the MMI, awful until I was on T3 supplementation, awful going off, and I believe it is a combination of 3 or 4 things that helps me feel better now:

    1- Acetyl-L-Carnitine

    2- Methyl B12 and methyl folate

    3- A Brazil nut or two every day or so (for selenium)

    4- Wellbutrin prescription

    One more thing about when I was on MMI, my TSH rose into the normal range at the next blood test after I was told I could LOWER my dose by 5mg one day per week. The next blood test showed my TSH at just above normal range, so I could lower my dose again.  After that, I did my own thing and informed the Endo at each appointment as to what I had done until I was off the MMI.  At that point, my FT3 was sometimes below the normal range and sometimes barely into the bottom of the range, but my Endo would not give me supplementation.  It took a convoluted turn of events before I could go to a general doctor and get the LT3, then another ordeal when I had to go off it.

    Good luck on your journey through this problem.

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    • Posted

      Hi - I've got 20mg tablets at the moment so was taking one approximately every 8 hours (6am, 2pm and 10pm) which made more sense to me than taking 3 tablets in go (although my gp said it wouldn't make any difference). My resting heart is quite low - it's usually around the low 50's but I was also put on 5mg bisoprolol beta blockers as I was getting bouts of atrial fibrillation (my pulse would jump up to 120 with them) lasting quite a few hours along with palpitations - with the beta blocker it's gone down to around 40bpm. My resting pulse was the thing that made me think something wasn't right initially - it's gone from the low 50's to around 67-70 back in May but I didn't think anything of it. It was also when the atrial fibrillation started occuring I went to my and one night ended up in A&E at the local hospital where the diagnosed the hyperactive thryoid (the same thing happened in 2006 and was out down to a viral thryoid infection). I've just looked at the test results from a few weeks ago and they measure Serum TSH miu/L [0.2 - 4] and Serum free T4 pmol/L [10 -20]

      What dose of Acetyl-L-Carnitine do you take currently? Are you taking the Wellbutrin for the T3 - none of my tests have a figure for T3?

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    • Posted

      It makes sense with the beta blocker.  I started out with that along with 60 mg MMI when I was first dx'd with Graves' Disease.  I was immediately told to discontinue the beta blocker and go down to 40 mg of MMI after a month.  I don't know how high my pulse had gotten before the meds but it was racing.  If my pulse drops below 60 I feel half dead, but I am 66 years old and that might make a difference.

      I take 500 mg A-L-Carnitine morning and night so 1000 grams total, and mostly because I *might* be a carrier for Primary Carnitine Deficiency, which *sometimes* causes symptoms similar to low thyroid.  I've had those symptoms much more frequently than I ever had hyper thyroid symptoms.

      My GP prescribed the Wellbutrin because my Endo said my symptoms were "not the thyroid," and must be something else.  My GP diagnosed depression after giving me a questionaire about my symptoms and said that Wellbutrin is specifically aimed at the types of symptoms I was having.  I had been on other anti-depressants before--SSRI types which didn't help me, but this one works a different way.

      A lot of the time they will not test for T3, unless they suspect it is very high and want to see how high it is when the TSH is practically zero.

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  • Posted

    I saw my endo this evening - the blood tests for Graves came back negative, so his opinion is that the hyperthyroidism cause was a viral thyroid infection. He's told me to stop taking the carbrimazol as I most likely over medicated. I did say I was a bit concerned that although the T4 was in the normal range, with my TSH being so low that if I stopped the carbrimazol would it start causing the T4 to start rising? He said to have another thyroid function test in four weeks and see him again in five weeks. I have to keep the carbrimazol on 'stand by' in case I start experiencing symptoms of being hyper again. I'll continue with 500mg daily of acetyl-l-carnitine and see how my next blood test goes.
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    • Posted

      He didn't do blood tests at this time so you don't know what your TSH is now. Your plan sounds like a good one. Keep an eye on how you feel and if you get symptoms of hyper again start to add Carb back in again at perhaps a lower dose. It is quite a juggling act between how you feel and what your blood values are but I think you are doing fine from the sounds of it right now. Also, if you feel okay off the Carb, you have more range to add the Carnitines back in. The Acetyl especially combined with Carb really causes a rise in TSH but it takes a much higher dose of Acetyl to do this if you are not combining it with an antithyroid drug. See how you feel on the 500 mg alone for now and you can always try adding more if you feel it is necessary while you are off the Carb as long as you feel good on whatever dose you take. Do keep us posted on how you are doing. Thanks.
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    • Posted

      Will do and thanks for all the advice and support over the last few weeks.
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  • Posted

    Hi - I guess I should move this to the Hypoactive thryoid discussion now, but thought I'd just do a short update.

    My thryoid blood test from Monday this week has come back with: Serum TSH level 7.7 miu/L [0.2 - 4] - Above high reference limit and Serum free T4 level 12.5 pmol/L [10 - 20]. I'm still taking 500mg daily of acetyl-l-carnitine which I guess I should stop? However, I don't feel I have physical signs of my thryoid being underactive other than a low resting pulse rate (44 bpm).

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    • Posted

      Yes I would defintely stop the Acetyl now.  The fact that you do not feel hypo, I think is good.  Does your doc never do a T3?  Mine always checks TSH, T4, T3 and liver function tests AST and ALT and complete blood count, the latter because carbimazole can affect the liver and blood.  You might want to ask your doc to do all of these saying you have a concern because you have heard carbimazole can affect the liver and blood.  You don't have to move this to the hypo discussion because you were originally hyperactive.  Also I wonder if you might have Hashimoto's?  Fern on this Board is more knowledgeable about that.  Also one visit with a Naturopath might be helpful.  A lot of people with thyroid diseases also have adrenal problems and high cortisol levels.  It sounds like you had a thyroiditis and not an autoimmune thyroid problem like Graves.  Definitely stop the Acetyl and see where your levels are when you do after a month and also see how you are feeling.  It is important to reduce your stress level, eat healthy and get lots of rest.
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    • Posted

      My GP seems to do the minimum needed - they're only ever tested my TSH and T4 levels. I had a full blood test done after four weeks of being on carbrimazole which came back fine (I've been off the carbrimazole for 6 weeks now). I have another visit to the consultant next week, so will ask about the Hashimoto's - his letter said that conventional TPO antibodies and TSH receptor antibodies weren't detected in the blood test that he did.

       

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