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Thyroid UK
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Total thyroidectomy

I was diagnosed with Graves nearly 3 years ago. At that point I thought I was losing my mind. Between my very lovely GP and OCDEM at the Churchill hospital Oxford I learned to cope and understand just how many areas of the body the thyroid actually governed. Self medicating outside of what is prescribed is dangerous. Don't believe me.... google thyroid storm.

So I digress... I was controlled with 5mg per day of carbi but at 56 years of age I knew it was destroying my bones. I had the usual six monthly appointments. My weight went up but I did quit smoking and go through the menopause at the same time so triple wammy. I joined slimming world six months ago and currently I have lost 26 pounds, I did put 6lbs back on over the last month. Not only was it christmas but for me it came early as I underwent a total thyroidectomy on the 7th December and I can honestly say I feel fabulous. My only downside is a seroma which is going to be drained on Monday. The surgical team were and are bloody marvelous the support first class.

I took calcium tablets for 10 days, I've just had my first blood test so that should come back ok. No cramps or tingles so I think my parathyroids have bounced back.

I'm currently taking 125mcg levothyroxine which I understand will be adjusted over time. I would add I have discovered afternoon naps!

3 Replies

Glad you're feeling well. Sounds like your journey with hypothyroidism starts now. Keep in touch with the forum, you might find the wealth of knowledge helpful in the future.

By the way, did the doctor check your vitamin D? If it's in a good range it helps for a better recovery from thyroidectomy and is best optimised before surgery but worth checking now if not done.


It is good to hear you are doing so well and it makes a refreshing change. I dont think thyroid storm is ever caused by medication. Others will know more.

1 like

Good morning Loader1810,

Self medicating outside of what is prescribed is dangerous. Don't believe me.... google thyroid storm.

First of all, thyroid storm is one of the most dangerous endocrine emergencies and requires immediate treatment. A considerable proportion of those who are diagnosed do die (reported at 10% in one paper).

If we could rely on being prescribed the appropriate thyroid hormone dose, then, yes, there would be no reason to self medicate at all. Truth of the matter is that many of us have had problems getting the necessary prescription(s). The reasons vary and include:

Doctors prescribing to TSH only and assuming any in-range result is good;

Doctors mis-understanding TSH and reducing dose when TSH rises;

Heavy-handed prescribing - increases and decreases in increments of 25 micrograms a day. (I self-medicated an increase from 100 to 112.5 because I knew that my doctor would either stick at 100 or increase to 125. I did confess and my new doctor was perfectly happy.);

Unwillingness to prescribe T3 even when demonstrated to be necessary.

I am sure that there will be cases in which self-medication with thyroid hormones contributed to a thyroid storm, but I have been unable to find an example. Certainly, massive one-off overdoses can be dangerous. Even then, a remarkable number of patients survive with decent treatment. It is hard to find another medicine where such large overdoses are most often survived.

And small overdoses can cause other issues (a classic being atrial fibrillation in those susceptible to that but there are many others). Further, long-term over-medication is not desirable.

However, I have not found a single case where modest over-medication was pointed out as the cause of a thyroid storm. By which I mean taking a slightly larger dose than prescribed.

Perhaps surprisingly, non-thyroid medicines are sometimes reported as causing thyroid storm:

Thyroid storm induced by aspirin intoxication and the effect of hemodialysis: a case report.


And yes, changing doses of carbimazole could be dangerous.


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