HELP BLOOD TEST

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Hi I'm hoping someone can offer advice, I had my bloods done yesterday, I have hyperthyroidism and my free T4 3 weeks ago was 35.5 and my TSH was 0.02. Today my results are free T4 10.5 (7-17) and TSH 0.02. I have been taking 30mg carbimazole a day and the GP I saw wants me to continue on 30mg a day I think this is mad! I told her I would surely become underactive if I continue but she disagreed, I'm not seeing Endo for another 5 weeks... what would you do? Thank you

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  • Posted

    I was started on 10 mg and my Free T3 and Free T4 immediately fell to the middle of the range and stayed there for 2 years while I was on 10 mg of Methimazole.  My TSH remained at less than 0.001 for those two years until I took further action with adding supplements.  I did not alter my dose at all until my TSH started to rise.

    I think perhaps your doc has seen this before.  The dosage it took to normalize your Free T4 was 30 mg and unless you do something else, I don't think your results will alter from where they are.  Also, she should be measuring Free T3 as well.

    So in my case I read a research article in a reputable Endocrinology Journal about the benefits of hyperthyroid patients taking 3,000 to 4,000 mg of Regular L-Carnitine per day.  I also read that many, if not most, thyroid patients are deficient in vitamin D.  I was tested for both my carnitine levels and my vitamin D levels and was deficient in them.  So I took the recommended dosage of Regular L-Carnitine and added Vitamin D, initially at 5,000 IU per day and then reduced to 1,000 IU per day.  I was also deficient in Magnesium and added 200 mg a day.  My TSH rose for the first time to 0.12.  Still not normal, but at least in the right direction.  My Endocrinologist then cut my Methimazole dosage in half to 5 mg and in two weeks I had a setback reaction of return of symptoms so after speaking to her, we agreed to up it to 7.5 mg.  I then experimented with different carnitines and added 1,000 mg of Acetyl-L-carnitine to the supplements I was already taking and my TSH just shot right up to about 0.70 in the normal range.  My new Endo always decreased my dosages by small amounts of 2.5 mg and that worked well for me.  I found my labs were extra sensitive to the Acetyl so I had to monitor more frequently, my Endocrinologist took care of my meds dosage and I altered my supplements dosage, especially the Acetyl.  I have posted to Boards about my experience many times and others who have followed what I did started on Acetyl but did not monitor carefully and made no adjustments and went very hypo very fast so I caution anyone who tries this to get tested more frequently (like about every 3 weeks)  and make adjustments to both meds and supplement dosages as your values improve quickly.

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    • Posted

      Thank you for your reply. I have added a lot of supplements including vitamin d, selenium, evening promise oil, green tea, lemon balm tea and I have improved alongside carbimazole obviously. I feel the dose I'm on is too high, it fell from Free t4 26.5 to 10.5 in two weeks which is very fast I think.

      Thank you for the information about the other supplements I will read up about them, I still have 5 weeks until I see my endo for my 1st appointment and will also ask him.

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  • Posted

    Hi Mal,  I had the same experience as yours except I was diagnosed GD with T4 just slightly over the range and started taking 5mg MM. After few weeks, my T4 down to just above lower limit and T3 below the lower limit... and I started feeling passive, idle, and underactively miserable! Talked to endo and got a response: keep taking 5mg MM!  I was very upset and decided to cut ATM to half (2.5mg) myself. Weeks later, my T4 T3 came back in mid range and I felt much better... Soon after, I became euthyroid. I have suspected and wondered that many endos would like (or expect) to put hyper patients in a high dose to reverse their thyroid level and wait for the point that they can order RAI or surgery and... a lifetime med treatment. I feel sad about it but unable to change it except taking my own risk... AW, I am not in a position to give any medical advice here except sharing my experience. I hope you will be able to improve your condition soon. 
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  • Posted

    Oh, just like to add: most endos just don't care or always dismiss their hyperthyroidism/GD patients' symptoms or sufferings; they would just focus and rely on blood test numbers. Too bad that we can only come to this forum (or others?) to vent a bit. BTW, when your thyroid level came down, how did you feel? any noticeable symptoms or sufferings? If not, seems no argument for changing the dose unless thyroid level reverses to hypo? 

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    • Posted

      Hi thank you for your reply. I haven't even seen an endo yet and not sure what is causing my hyperthyroidism. I feel like my GP doesn't know fully what to do. If I carry on at 30mg I will become hypo, all I have read is that block and replace should be used to avoid hyper and avoid hypo but my GP didn't suggest this. I'm thinking of stopping carbimazole or maybe take just 5mg. I have improved since my levels have come down but in the last few days I have been having a lot of muscle aches, skin drying more and feeling tired which I guesed that I could be heading for hypo. This place really is so helpful as I have learnt more here than from my GP.

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  • Posted

    Yes it is important to know the cause of your hyperthyroidism.  If you have Hashimoto's, you will really bounce back and forth between Hyper and hypo.  If you have Graves, I am not so sure that would happen.  I would not stop or decrease my meds without another blood test.  If the blood test shows your labs are fairly stable, i.e. they haven't changed much from your last test, then I would look into adding supplements of vitamins, minerals and amino acids if you are deficient as most of us hyper patients are.  

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    • Posted

      My TPO antibody is negative, from what I've read that means its unlikely hashimotos. I've not been tested for any other antivodies until my first endo appt. I see my body has reacted fast within two weeks to drop from 26.5 to 10.5, I'm going to try and see a different GP to get a second opinion as I'm not happy with what I was told today. Thank you so much for getting back to me.

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    • Posted

      I agree that with negative anti-TPO antibodies, you most likely would not have Hashimoto's.  I think getting a second GP opinion is a great idea.  He might repeat your thyroid tests and you will see where you are at currently if he/she does which helps guide you on what you want to do next about your meds dosage..  You do not yet know the cause of your hyperthyroidism and I am sure when you see the Endo, he will do more testing to find that out.and that should help as well.  All the best to you!

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    • Posted

      Thank you yes I hope the endo will find out the cause too. My free T4 result was from two days ago so not due another blood test. I will try to get a doctors appointment next week hopefully to get a second opinion. Thank you for taking the time to get back to me.
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  • Posted

    So I got a second opinion and this GP also thinks I should remain on 30mg. I asked what happens if my next blood test next week shows free T4 at 0 and my TSH still 0.02. She said she didn't know!! Gives me no reassurance at all just that I will have to deal with feeling crap whatever the result.

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    • Posted

      Hi mal sorry u not feeling good ur GP has no clue what's he /she talking abt if u carry on taking the high dose of carbimazole u will become hypo when I was diagnosed in 2016 my tsh was 0.02 and t4 was 52.6 my GP put me on 15 mg carbimazole a day and then after 5 weeks my endo cut it down to 5 mg a day then after two weeks my t4 was 10.3 similar to urs my GP stopped the medication completely I struggled with the symptoms afterwards but with the help of Linda.....Madge ....Dan ..I started taking supplements and my symptoms improved a lot ...if GP s not doing the full thyroid blood panel for u ..u can get it done private ..

      If u want I can send u the link privately and then u can see in that test they check tsh ...ft4...ft3...tpo...thyrogulbin..antibodies... And I think t4 ...pls let me know if I can help u ....samy

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    • Posted

      Hi Samy, thank you so much for your message it has made me feel better in that I am being over medicated, both GP's I saw didn't know what would happen of by next week if my free t4 is underactive which doesn't give me much confidence. I have rang the endo's secretary to ask their opinion but have not heard anything back and no answer today, and with easter this weekend I'm left guessing which dose I should take!!! I might try 15mg until my test next bloods on Weds. I am taking lots of vitamins and feel like they are helping, shame I can't say the same for my doctor! The only thing I've read is I shouldn't drop the dose quick from other forum messages but not sure why not?!

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    • Posted

      Because I'm confused since last week I decided to try 10mg, then I got paranoid so took 15mg next day then the 2nd GP said 30mg so I have taken 30mg for last two days. I think 10mg would be fine but I can't be sure, I'm constipated now and tired, but still need my beta blocker as my heart is still faster than normal... x

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    • Posted

      U getting constipation bcs u becoming hypo if u reduce ur carbimazole it will help with ur ts to go up plus like Linda did when her tsh was suppressed even her both ts were normal she took l carntine which helped her a lot u can ask GP to test u for that but if u read Linda s messages she took it and changed her tsh to in upper ranges so try doing that it might make a difference but definitely reduce ur carbimazole bcs the symptoms u r getting now rare hypo symptoms...
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    • Posted

      For heart palpation s carry on taking propranolol whenever u need it I'm telling u from my personal experience that even I had goiter my medication was stopped quickly even I was symptomatic but slowly and gradually with the vitamins pains and aches and hair fall got better my vision has messed up but it might be bcs I got stomach gastritis after I got thyroid problem

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    • Posted

      Thank you yes I'll still take them for my heart until I feel its normalized a bit. I feel like GP's should at least phone an endo for advice, I feel they are completely wrong at the moment, I'm nearly at the bottom of the normal range so why would I want me t4 reduced even more is beyond me, she couldn't answer what if it was zero next week. Would you think 10mg is sufficient or still too much? Thank you

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    • Posted

      I was on 15 mg and like u in few weeks my levels dropped quickly bcs endo said my body reacted fast with the medication but in my case my tsh came up as well try 10 mg first with l carntine and see how it goes it will take few days but will feel the difference ...and when u see ur endo ask him to check the antibodies for u ...just a question mal when u were diagnosed what symptoms u had at that time or before?
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    • Posted

      The GP said because my TSH still hasn't moved to keep on 30mg but it makes no sense as it has dropped from 35.5 to 10.5 in 6 weeks so I will be left with 0 t4. I lost weight, was tired and heart palpitations/racing. I feel so much better now compared to 6 weeks ago. My TPO antibody was negative, GP said the endo would do the other tests but my 1st appointment is still a month away! I will have to see what my next bloods are on this lower dose to see if it changes anything.

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    • Posted

      Those r the symptoms of overactive thyroid ..it would be wise thinking that if u lower ur dose and take 10 mg a day to bring up ur tsh u should take l carntine ...I'm not a medical doctor but have learnt a lot from the past two years not from the doctors but from the forums ...try to lower ur dose and see how u feel when u get ur blood done ask ur GP to check the tsi or trab antibodies for u just fight for that take someone with u ..and see how it goes ...I hope u get better soon ...luv ...samy

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    • Posted

      Another thing mal tsh is not the actual hormone t4 and t3 s are tsh is only produced by pituitary explain this to ur GP s they are like others ...have poor knowledge abt thyroid
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