Hyperthyroid but now stopped drugs as now Hypothyroid !! Consultant not sure why , help

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Hi , hope someone can give me some advice! ??

my name is mellisa I was diagonosed with hyperthyroiditis 2 mths ago as TSH was 0.02 and T4 level was 41.

My white blood cell count was also low so was put on 20mg daily thyroid meds carbimizole and beta blockers as my resting heart rate was 160 RMP whilst in hospital for a week as I was so unwell. I was told to watch closely for signs of my immune system getting worse - sore throat, ulcers etc.

4 weeks later my T4 level was 7 so meds were reduced to 5mg. TSH ?

4 weeks check today and Im hypothyroid so meds have been stopped. Goiter is very uncomfortable and was going to have hot and cold spot test with MRI but now im hypo they said it wouldnt be the right time to check the goitre. Ive had an ultra sound scan and has been diagonised a mutli nodual goitre but has started to

feel uncomfortable especially at night if I sleep on my back as i wake up choking. Just have a constant swollen throat feeling.

I do have Lupus, Sjogrens syndrome

I have been tested for graves disease but that came back negative.

To be honest I felt great a few weeks after starting the carbimizole then started to feel terrible sooo tired since my levels have dropped the other way to hypo ! Consultant is going to do bloods again after 4 weeks without medication to see if I stay hypo or go back to Hyper . If i become hyper again then they will do more tests on the multi nodular goitre.

Anyone else go through this type of confusion. Consultant doesnt even seem to know , he said some people can start out hyper then change to hypo after initial start of hyperthyroid diagonisis . Im so confused. ??

Im now hypo but still losing weight 4stone so far since march. Im on 2 different anti-sickness tablets 3 times daily for constant nausea.

Feel horrible, emotional and very anxious all the time ??

Would love some advice plz

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4 Replies

  • Posted

    You poor thing! I too am totally confused by it all as I was very hyper 3 months ago (T4 was 47) and now after carbimazole I feel very hypo but I am not so low as you as my T4 is 13 so in normal range, but my TSH says I'm hyper. My white blood cells are low but consultant has put me on 5mg of carb still, when I thought I ought to come off it (started on 20mg, went up to 25).

    Have you been tested for any other antibodies, such as Hashimoto's? Or it could be that you have some hot nodules which flared up and have now burnt themselves out, hence going hypo. I hope that you get sorted. This is a very frustrating illness.

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    • Posted

      It is so confusing evergreen!

      Nice to hear from someone going through the same.

      They have checked my antibodies and came back normal. My consultant is stumped at the mo , just wants to see if now he has stopped medication he wants to see if i go hyper again by next blood test in 4weeks. Then he will look more at the goitre and do more tests ( hot & cold for noduals) on my multi nodular goiter,

      I do agree with you I started feeling unwell and sluggish before my T4 dropped down so low with the carbimazole but still took the 5mg a day like you and then when I next went I was really hypo . Prob about 2 weeks before the consultants visit I just knew I didnt feel well but not same symtoms as being hyper and weirdly they had dropped , so I think we know our own bodies when they are just not right.

      Hope all goes well for you , let me know how you get on.

      Mellisa

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  • Posted

    Have you gotten a second opnion on any of these issues? Have you been told you need thyroid meds and then taken off of them until next blood check? This part happened to me and is a big mistake. I pray you find a doctor that knows more about the thyroid soon. Any time you feel this bad after seeing a physician ad a hospital stay you need to see another doctor. This is only my opnion. I ask around and found people that are doing better since seeing their doctors and I tried the same doctors till I was satisfied with my improvement. I still have problems but much better. Iam so sorry to hear what you are going through and truly want you to feel much better. Dr. Shopping takes energy but please keep trying to get help and I hope you have friends and family to help you. Barbara
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    • Posted

      I was more sad Barbara, as my lupus has already caused me to have an mid aortic graft, my left kidney removed and right bypass to my right kidney. It then started attacking my joints so bad the last 2 yrs i was in a wheelchair by sept of last yr at 38yrs old , I started to improve in Janurary and was walking normally again , pain free etc then this came from nowhere !!

      Maybe its a drug induced problem from all my auto immune medication , Steriods (alot of IV , intra muscular and joint injections of steriods monthly) also Biological infusion too.

      Goodness know its a Endocrinology Consultant seeing me a top guy yrs of experience and he's confused with my weird results at the mo. He just wants to see what happens with the drugs stopped ? Go hyper then goitre hot and cold nodule test or a may stay hypo. He thinks a small amount of people start as hyperthyrodism but then change naturally to hypothyroidism.

      Just suppose wait and see in 4wks.

      Just want to feel normal again Sick of being Sick if you know what I mean !

      Thankyou so much

      Mellisa

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