Diagnosed with Hyperthyroidism - What next?

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Hi...So I was diagnosed with Hypothyroidism yesterday.

I first presented with symptoms Aug 2015, bloods were ok but I felt restricted in my throat. After an USS in Oct 2015, I was told I had a Multi- Nodular Goiter & didnt really need to be seen again! This worried me so went back to GP & asked to be referred to Endo, this took 8 months! Anyway had bloods repeated which showed TSH of 0.03, have crazy symptoms: heat intolerance, palpatations, brain fog ++, super anxious, jittery & the most horrendous anger issues, which come from nowhere!

My Consultant diagnosed Hyperthyroidism caused by a Toxic Multinodular Thyroid. He initially suggested RAI treatment but my youngest children are 1, 2 & 5, so not an option. He then moved onto a 10mg daily dose of (something beginning with C??). No prescription yet as his receptionist was busy 😒, or surgery to remove part of my thyroid.

Now im not sure what to do...I read that medication rarely helps with a toxic multinodular thyroid & that the side effects can be horrid. I also read that RAI or surgery is better as it may cause me to be Hypothyroid, which is easier to treat?? Surely we would all prefer to have a healthy thyroid rather than a hypo or hyper one - is either one better??

Please can anyone help, I feel like im going abit crazy & would really appreciate it if anybody could share their experience...

Thankyou so much...

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11 Replies

  • Posted

    Hi there, sorry to hear you are feeling awful.

    I had Hyperthyroidism which was not diagnosed until I was very sick. I had cabin ample to reduce my levels and then I opted for surgery to have half my thyroid removed. The half that contained the toxic nodule. It's it you whole thyroid?

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    • Posted

      Hi,

      Thanks for your reply, i have nodules on both sides, but the 3 larger ones(2.8cm & smaller) are on the right hand-side.

      How did you feel on the Carbimazol, did it reduce your levels? Do you feel better are your operation?

      I hope you dont mind me asking... & hope your feeling much better...

      Best wishes, Veevee xx

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    • Posted

      Even though my levels evened out on the carbimazole i still felt awful until I had the surgery which was 4 months after going on Carbimazole. Once I had the surgery and got off all medication I slowly got better. Took about 6 months after surgery to get back to normal and gain muscle fat and energy back lol. I still have half my thyroid though therefore don't need medication. Looking back I am so happy I did not go for RAI. Your situation is a bit different to mine though as I could keep half of mine. Hope everything goes well and either ways things will get better :-)
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  • Posted

    I'm going to have surgery as soon as I'm stable. Hypo is easier to treat Anton thyroxine a safer drug than carbimazole. It will keep coming back even if you go into remission. Anything can start it off again. I've had Graves since 2009 and had enough. a
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    • Posted

      Thanks Sue...

      I think surgery may be the route im going, but still so unsure!

      My consultant basically said its up to me to choose what i think is best...

      Hope you feel better soon, sending positive thoughts your way!

      Best wishes. Veevee xx

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  • Posted

    If you rule out RAI treatment the only option you are left with is surgery. It would be best to have an appointment with the surgeon who can detail the advantages and also the risks. One of the risks involved with surgery is damage to the parathyroid glands. These regulate the Calcium level in blood stream. The best option would be to keep as much as possible of your thyroid to minimise the risk of becoming permanently hypothyroid. 

    If a biopsy of the removed nodules shows that they are malignant, most surgeons would recommend a follow-up treatment with radioactive iodine I-131 after the surgery. This is to make sure that parts of the nodules that may have been missed during the surgery are destroyed.

    The biggest advantage of RAI treatment is that it is non-invasive. The toxic nodules have a far greater uptake of radioactive iodine than the rest of the thyroid and can be very effectively targeted.  You will have to be quarantined for about 4 days and then avoid close contact with family members (like hugging) for about 3 weeks. You should also avoid fathering a child for the first 4 months following the treatment.   

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    • Posted

      Hi Dan,

      Thanks for your reply... My Carbimazole dose is 10mg and its been suggested that such a low dose shouldnt pose too many side effects.

      RAI & surgery now sound rather drastic, so im going to start meds combined with some alternative remedies & see how things go!

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  • Posted

    Provided you can be stabilised and possibly go into remission it's best not to do anything too invasive.  Remember that it's not a good idea to be on carbimazole long term.  I went into remission and it came back at the beginning of 2013 and they can't stablise me.  I going for surgery and seeing the surgeon next month. Thyroxine is a safer option and carbomazole is decreasing my white cells which is not good.  

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    • Posted

      Hi Sue, thanks for your reply. I must admit that the thought of long term Carbimazole has crossed my mind! I think im going to try the meds initially, along with some supplements & see how I go...I'm seeing my Cons in 2 months for a review & in the meantime Im going to keep researching! x

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