Any advice please?

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Hi, I have hyperthyroidism and my last bloods week and a half ago were:

TSH: 0.02(0.5-5.5)

Free T4: 10.5 (7-17)

I was on 30mg of carbimazol and have reduced to 15mg a day. I have been getting more constipated, tired, itchy scalp and puffy eyelids, my heart is not as fast as when I was diagnosed but still higher than normal.

What is going on should I be taking more carbimazole or is my dose making me hypo? I am so paranoid I should be taking a higher dose! Please if anyone can offer any advice it would be much appreciated!

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15 Replies

  • Posted

    If you think you’re becoming HYPO .. why would you take a higher dose of Carbimazole 

    Your TSH is lower than you’d  want  it to be im sure .

    Linda187 or danr  will be along soon .. and they are pretty much top notch at doing the numbers 

    And working out how to get them to suit you best .

    Mx🌹

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    • Posted

      I just don't know if I am becoming hypo or going back to hyper if 15mg isn't enough, I feel from my last results that my t4 was becoming too low so maybe it is hypo that I'm experiencing but I thought my heart rate would have slowed down if I was becoming hypo, it's all so confusing! Thank you for your message I hope they see this and give me advice too x

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  • Posted

    Did you cut your dose in half because your doc told you to or you just made this decision because of your Free T4 and you feel it had fallen too low and you were afraid it would go lower?  First of all, when you are hyperthyroid you need to know why, that is what your diagnosis is after all proper tests are done.  In me, that was testing for all antibodies, i.e. anti-TPO and TBII, later TRAb.  Radioactive uptake test.  TSH, Free T3 and Free T4.  My uptake test and antibody tests showed that the cause of my hyperactivity was due to Graves Disease only.  In my case, I was put on 10 mg of Methimazole and my Free T3 and T4 came down to the middle of the range and stayed there for 2 years while I continued to take that dose.  However, my TSH just would not rise from less than 0.001 during those 2 years and that concerned me so I did more research and started adding supplements to my treatment.  I got tested for my Carnitine levels and vitamin D levels and they were deficient so I added back those supplements.  I was low on Magnesium so I added that as well.  It made a huge difference.  My doctor did not lower my meds dosage until my TSH started to rise which it only did 2 years after diagnosis and then he decreased it very slowly.  So if you have Graves only and your meds dosage brought your Free T4 down to 10, you would probably stay at that level.  However, if  you have Hashimoto's or Graves and Hashimoto's or other thyroid problems like goiters, then your levels will bounce around, especially with Hashimoto's.  So ask your doctor for your diagnosis and also ask him to test for at least your carnitine and vitamin D and Magnesium levels and if deficient, add them in the form of supplements.  And let us know by posting again to this Board and with more information, we can better help you.

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    • Posted

      Hi Linda, thanks for replying. I cut my dose down myself, I feel like the GP was wrong to keep me at that high/ish dose when my t4 has fallen so fast and nearing the bottom of the range. Maybe I was wrong to do so but when I asked what if by my next test my t4 is 0 what would happen she had no idea so I have no confidence in her, I will get another test on Wednesday. I definitely feel more tired in the last few days along with puffy eyelids, constipation but my heart can be fast at times which is making me wonder if im hyper or hypo, what do you think?

      I don't know the cause, the only antibody my gp would do was TPO and it was negative, she said the endo would do further testing so until then I am clueless, my 1st appt is end of April which still feels so far away since my referal at the beginning of February.

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    • Posted

      HI Linda,

      I'm curious if you have any suggestions on what to read regarding having both the antibodies for Hashimotos and Graves.  I have both, as I've mentioned in previous posts, but when I brought that up to my doctor he said that a lot of folks have both antibodies, but that it doesn't mean I have both.  He said there is no difference in how it's treated or how it impacts me, I still have Graves.  Do you have any suggested readings to educate myself? Google was only slightly helpful.

      Thanks!

       

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    • Posted

      Some docs when testing antibodies will test the ones for Graves (TBII or TRAb) and anti-TPO and that's it.  To confirm a Hashimoto's diagnosis, you need to test TGAb as well.  The anti-TPO is usually really high in Hashi's but can also be high in Graves.  I will send you a link by email.

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  • Posted

    But when your TSH rises, your Frees will fall so it is quite a juggling act.
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    • Posted

      I didn't know that about the carnitine. Do you think I have swayed slightly hypo or am I not taking enough carbimazole with my symptoms? Thank you

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    • Posted

      I don't think you are hypo.  I had values right at the bottom of the scale and I did not feel hypo as long as my TSH was 2.5 or under.  I know I had a backlash of symptoms when my doc reduced my dosage too quickly from 10 mg to 5 when my TSH began to rise.  That was too much for me and I benefited from slower reductions of 2.5 mg at a time.  I occasionally have palpitations and I take a low dose of Propranolol if it is bothersome but I don't have that much now.  The loss of carnitine in muscles causes a lot of hyper patients muscle aches.  I don't know if your symptoms were because you dropped so fast.  As I said before, you need to know your diagnosis because if you have any other diagnosis than Graves, I don't know how the dosage will affect you.

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    • Posted

      Hi, I did counter/suffer some hypo symptoms as T4, T3 down to/below low limit after taking MMI... I was upset that my endo still insisted her prescribed dose, but then I cut it down myself and all went back to mid levels. My symptoms: idle, downcast, no energy and weak to do anything, feel bad about self, ... This was just the happening of my case, and I had GD. Just share my experience, not advice.
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    • Posted

      Hi thank you for your message. I have managed to speak on the phone to the endo (not had my 1st appt yet so I was relieved that he rang me) He agreed that I was being overmedicated and that I should only be taking 15mg not 30mg like the 2 GP's told me to! What a relief! He also said its madness why they haven't tested me for the graves antibody and he will add that onto my test tomorrow. Thank you for responding.

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    • Posted

      Hi thank you for your message. I have managed to speak on the phone to the endo (not had my 1st appt yet so I was relieved that he rang me) He agreed that I was being overmedicated and that I should only be taking 15mg not 30mg like the 2 GP's told me to! What a relief! He also said its madness why they haven't tested me for the graves antibody and he will add that onto my test tomorrow. Thank you for responding.

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