Totally Confused

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Hi everyone,

I am new here, and have a bit of a long story, so apologies in advance for the essay to follow! I am totally confused with my disease, the treatment I have received and my situation, I'm really hoping someone here can help.

I am a 27 y/o female. I was diagnosed in November 2014 (6 months postpartum). I was overactive with symptoms -

TSH: <0.01 (0.3-6)

FT4: 39.1 (9-24)

FT3: 12 (3.5 - 6.5)

Anti-TPO: 483.8 (<6)

Thyroid Receptor: 3/L (0-15)

I was immediately placed on Carbimazole with a diagnosis of Hashimoto's. I then went on to start a block and replace regimen and after several tumultuous months I felt well. Just in time for my Endo to tell me to cease all medicine at the 18 month mark.

I am now 4 days without any medicine.

The question that keeps cropping up is why did I receive more of a Graves-type treatment if I don't have Graves? It is apparent that I have Hashimoto's probably triggered by pregnancy/childbirth, but nothing to suggest Graves. I had no ophthalmology or goitre.

Having been without medicine I started to worry about what would happen if I was to relapse, i.e. What way I would go. I asked my Endo and he said 'hyper in the short term'. I then asked why if I had Hashimoto's? And he said 'Antibodies'.

Now I am really confused. I am terrified I could have a thyroid storm and it will be fatal.

I am trying to make sense of this but every turn throws me another curveball.

Any advice at all appreciated!

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12 Replies

  • Posted

    I may be wrong, but I heard that people with Hashimoto's are often hyper to start with but then end up being hypo. Are you being monitored with regular blood tests? During the hyper stage of the disease, you need treatment, but your levels must have come down for your endo to have taken you off the meds. Do you have any up to date blood results?
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    • Posted

      Hi evergreen and thanks so much for your reply. I didn't actually know Hashimoto's started could start off hyper until very recently, but I'm still confused about it because no matter how hard I look or how much I ask I can't find anyone else who has had this treatment for it.

      However! I had one normal TFT my first month on Carbimazole (Dec 2014) I was then overtly hypothyroid for approx 17 months until about 4 weeks ago when my labs were:

      TSH: 3.69 (0.3-6)

      FT4: 17.7 (9-24)

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    • Posted

      It sounds as though the carbimazole has done its job. Doctors don't like to use it for more than 18 months because it is a risky med to take because it can damage your liver and cause your white blood cell count to drop. So that is why your doc has taken you off it now that you are in the normal range. I hope it stays like that for you. Are you going to have regular checks?
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    • Posted

      Hi evergreen and thank you again. Yes I will be having regular checks for blood collection and also an appointment made with my Endo.

      Would I then be correct in saying that I have been in the hyper stage of Hashimoto's hence this treatment protocol?

      If I became hyper again is it likely that I will become hypo before my levels went off the scale in the other direction?

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    • Posted

      Yes, you have been hyper enough to warrent treatment as it would have been dangerous to just wait until you came out of it by yourself. If you have Hashimoto's then normally you don't go hyper again. However, if you are having regular checks then these will ensure you don't go hypo and if you do, you will need treatment in the other direction, if you see what I mean.
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    • Posted

      Ah I see! Thank you evergreen you have been so helpful. In all the time I have been asking that question no one has explained to me that sometimes treatment with anti thyroid is warranted in Hashimoto's. Thank you, thank you! So as long as I am getting regular checks this lowers the risk of going into thyroid storm?

      I read that withdrawal of medication is a huge precursor for this (if I was to go hyper) and it scared the life out of me. Then I think of all the Graves patients who have obviously done this and gone into remission without storms!

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    • Posted

      What dose of carbimazole were you on when you stopped it? Did the endo gradually reduce it before asking you to stop?
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    • Posted

      I was on x2 20mg tablets of carb p/day and 75mcg thyroxine. I asked if I should wean off and he said no just to come off of all medication at once.
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    • Posted

      Well that combo is levelling you out in that it is suppressing your thyroid but then replacing the thyroxine. So it is not as if you are just blocking your thyroid. If you were on that much carbimazole and no thyroxine then it would be very dangerous to come off quickly, but your body is used to thyroxine and so will not be overwhelmed by your thyroid suddenly producing it. I think you will be fine. Good luck and keep us posted.
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    • Posted

      That makes a lot of sense! Thank you evergreen you have no idea how helpful you have been to me after all this time of confusion. I will keep you posted smile
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  • Posted

    It sounds as if you are on the right treatment but left without a full explanation. Hyper applies when the ts is low which yours is. I am sure others n the forum will explain in more detail but I am a novice myself and find that there are many, many questions left unanswered about thyroid issues by doctors and endocrinologists. I have found books on thyroid problems useful , there is an e free book one can download but we are not allowed to give links etc on this website as good as it is.

     

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