Hyperthyroid treatment started now stopped as now hypothyroid !!!!!

Posted , 4 users are following.

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

2 likes, 4 replies

4 Replies

  • Posted

    You may have Hashimoto's thyroiditis.  I would ask your doctor to check you for that.  If you do, it is too sensitive to Carbimazole which is what is causing the swings from hyper to hypo.  There was a lady who posted on here who had Hashimoto's and was swinging back and forth from hyper to hypo  and could not get control of it until she started taking Regular L-Carnitine, an amino acid supplement.  She took that and other supplements like vitamin D and really got to know her body well and how to adjust her meds/supplements to keep it in balance.  

    • Posted

      Thankyou so much for advice Linda,

      I will discuss that idea with my consultant,

      Mellisa

  • Posted

    Hang in there mellisa93605. I can only repeat what I have been told. I've heard from medical professionals that having Graves Disease will inevitably make me hypothyroid. They say these things, but don't follow up with a reasonable explanation except to say there will be scarring of the thyroid causing the hypothyroidism. Like you, I keep searching for information and answers. Sorry I couldn't have been more helpful.

  • Posted

    Oh my, I'm so sorry to hear that you're suffering. If I were you I'll have the goiter removed (thyroidectomy) that will be first & foremost. Choking while sleeping is very dangerous. Secondly, you should get tested for hashimoto or graves decease. Thirdly, find a good Endo that can diagnosed you properly. It's very strange that you went from hyper to hypo in such a short time. RAI might be a good choice for the goiter as well. I had my thyroid removed for the same reasons (choking in my sleep).  I'm ok now but I'm stuck with taking meds for life. I think I made a great decision. Good luck to you. 

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