Blood test after 5 weeks of therapy

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I open a new post as I understand this would provide more visibility than adding an answer to one of my existing posts. If I got wrong I apologise.

Summary:

- Very unwell progressively since October 2016

- Diagnosed with hyperthyroidism in December and Graves in January

- I have severe vitD deficiency since 5 years ago and I am on supplements which I keep changing as they don't raise the level in my blood at all

- Started Carbimazole in mid January,20mg/day (10+10)

- Developed a fever 2 weeks into the treatment and 3 consecutive blood counts revealed lower neutrophils, but always slightly within range

- Carbimazole sorted most of my hyper symptoms within 3/4 weeks and I felt much much better up until the next bullet!

- Developed an horrendous rash/hive 5 weeks into the treatment. The day after the rash I felt as unwell as I ever did, I could not keep my eyes open and I had strong stomach cramps. This lasted only that day. Which, by chance, was the day I drew blood for my 5 weeks check (see below)

- I have stopped Carbimazole after the rash arrived and took antihistaminic for 4 days

- The rash has gone completely and yesterday, I feel OK but not as well as before the rash appeared. I seem to have less energy these couple of days...

I have received the results of my bloods that I summarise here below.

TSH (range 0.35-5)

January <0.01

February <0.01

FT3 (range 3.5-6.5)

January 13.1

February 4.1

FT4 (range 9-24)

January 35

February 11.5

My neutrophils and white cells are back in the middle of the normal range, which is good!

So my idea is that I have been over medicated, hence the FT3/4values in my recent test and the reaction to Carbimazole.

On Wednesday I see my endocrinologistand and I would like to ask her about a lower dose of Carbimazole (5mg/day perhaps?) and L-Carnitine for the TSH.

What do you think? Is there anything else I should ask her?

Thank you!

P.S. I have got this time Folate and B12 measured as well, I will ask her about them too as they seem a little low to me

B12 (range 200-900) 311

Folate (range 2-17) 3

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5 Replies

  • Posted

    Yes over medicated as I mentioned before 😃. Definitely need to drop the dose! Ask your endo for help x

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  • Posted

    Your Free T3/T4 level is now within range which is good,  Because they are at the lower end of the range, you can ask your doc if you can decrease your dose.  I found for myself that I did far better when my dose was decreased 2.5 mg at a time.  The first time it was dropped by 5 mg and I had a rebound effect in 2 weeks.  Your doctor will know nothing about the Carnitine.  Despite the fact that there were very valid medical research studies on its benefit to hyperthyroid patients, most docs will not pick up on this for some reason.  I can email  you the link privately if you would like, and you can show it to your doc but for most of us, this is something that we undertook on our own based on our research or advice from a Naturopath.  As far as the vitamin D goes, I had tried a vitamin D pill and hated it.  I always take it in gel cap form now and that works much better for me.
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    • Posted

      Thank you Linda, always very helpful. Please do send the link over for me to read. I need to understand as well how important it is to raise TSH because I suppose when I felt really well a couple of weeks ago my TSH was still 0 but my FT3/4 a little higher than now... and I really did feel well. So I wonder what is the impact of having a TSH close to 0 in the long term, if I manage to keep my FT3/4 in the upper part of the range...

      Vitamin D wise I am now since 3 months ago on gel caps, after reading much around. I am looking forward to see if they had any effect at the next blood test!

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    • Posted

      For Vitamin D, for a while I took 5,000 mg gel caps and then reduced it to 1,000 mg daily for maintenance.  In my case, my FT3 and FT4 immediately came into range on 10 mg of Methimazole but my TSH remained at less than 0.001 for two years and I was not happy with that at all because though my symptoms were well controlled, that result showed my pituitary and thyroid were not working properly.  My Endo was shocked when he saw how much and how fast my TSH rose when I showed him the Carnitine bottle.  On the Regular L-Carnitine which was the one the research paper was written on, it does help with muscle aches and it raised my TSH only a little.  The one that raised it a lot was Acetyl-L-Carnitine but I had to monitor it very closely and adjust it very often to stay stable.  While I am grateful it worked so well, for me I did have a few side effects while on it but none on the Regular L-Carnitine at all.  Also when my TSH rose quite quickly, my Frees dropped down to bottom of the range.  
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  • Posted

    I see my endo tomorrow. Today is 1 week off Carbimazole and I still feel OK, maybe slightly more tired than usual.

    I will update you after the visit :-)

    Thank you

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