Hi, I am new to the forum and I was hoping that somebody might be able to offer some advice. In 2012 I was diagnosed with Hyperthyroidism at 17 years old. I am now 20 years old with the highest levels most consultants, doctors, etc. haven ever seen. My Hospital hasn't seen a level so high and I feel like I am dying. I now have Thyroid Heart Disease and a very large Goitre. I also have a baby that I am being helped with cause I can not carry her anymore with how weak I am. I am being pushed for surgery to have all of my thyroid removed and I think it is wrong. I spent over a grand going to Holland to get oil but it seems that it will take to long that way and it is very expensive and in the mean time I am deteriorating and so now I am guessing that a Thyroidectomy is my only option. I have a very short amount of time left to sort this out and I would really appreciate if anyone knows of any alternatives that work. I do not believe in having this operation. Having an organ removed and put on synthetic hormones for the rest of my life? I would rather not.

I would be grateful for any information anyone can provide.

Many Thanks.

8 Replies

  • Given how ill and how serious this is you need to accept surgery BUT ONLY ON CONDITION they will give you NDT not levothyroxine solely based on your post surgery symptoms not on your blood tests which will never reflect your true state of health

    My husband underwent surgery for severe Graves Disease and he suffered hell for 12 years afterwards because everyone ignored old Swedish research and insisted on relying on TSH


  • Shea0713, How long have you been taking Carbimazole? There is an alternative anti-thyroid drug propylthiouracil (PTU) but it can affect liver enzymes so isn't recommended for long term use although Carbimazole can be taken for years.

    Don't be pressured into agreeing to a thyroidectomy. If there is a date scheduled it can be cancelled and rescheduled at another time if you decide to have surgery.

  • Thankyou. I will 100% get the NDT. I have read so much on the Thyroid and the diets are all saying different things. I know people have cured it naturally but because I am so bad I don't know that it will work for me. I will make sure they write it down as they don't seem to know their head from their feet.

    Thanks guys :)

  • Shea, 80% of people do very well on Levothyroxine. My sister's thyroid was destroyed by radioactive ablatement when her Graves remission failed and she has been well on 100mcg Levothyroxine for 3 1/2 years. Thyroidless patients don't convert T3 in their thyroid so some do need the addition of Liothyronine (T3) to Levothyroxine in order to convert sufficient T3.

    NDT isn't licenced for use in the UK and doctors aren't trained in its use so although it can be prescribed on a named patient basis few doctors will take the responsibility of prescribing it and some health authorities won't permit doctors in their area to prescribe it.

  • I am sorry you are being forced into this position because you are so unwell. Also because you've developed Thyroid Heart Disease and a little baby to look after which you aren't able to do just now. You are quite right to discuss the pros and cons of this operation.

    If it has to be done, make sure they put in writing that you can get a Natural Dessicated Thyroid Hormone. Most Endocrinologists haven't heard of it or don't want to hear about it.

    If they persuade you that only levothyroxine is the best, demand that T3 be added as I know some do o.k. on the combination.

    The other option that Clutter suggested might work better for you to reduce your hormones.

    The following is an article which was sent to the British Thyroid Foundation but they ignored it completely, despite 3 reminders. It puts the record right and because the pharmaceutical companies are powerful have persuaded Endocrinologists worldwide that levo is superior. For some maybe but for many it's the least effective.


  • Hi there, i too have hyperthyroid / graves and large multi nodular goiter and understand only too well how awful you must feel right now.

    Are you on carbimazole and what are your most recent thyroid levels (tsh, t3 & t4) ? It may be that you are needing to increase your dosage. Carbimazole was a life saver for me and I managed to avoid surgery which my endo suggested I have.

  • On a positive note, I have a friend who had his thyroid removed at the age of 21, because of rampant hyperthyroidism like yours. He is now 48 and has been on standard levthyroxine ever since without any problems whatever. It is the nature of a forum like this that people like my friend who are happy with their treatment and medication don't find their way here. I've also had a thyroidectomy (more recently) and am better on Levo than when I was on T3 previously

    Make sure you check out all the options, in line with the good advice above, but remember that the outcome of surgery is not always bad. Best Wishes.

  • NDT is legal in this country. I will make sure I get the natural hormone. Also I can order it online I would just prefer to not have to pay for it and get it on prescription. So hopefully I can get a Doctor to prescribe it for me. There is a hospital called queen elizabeth near me that has top thyroid specialists. I am hoping to go there for my surgery aswell. The specialists there are trying to push medical cannabis to be legalised for thyroid patients as your thyroid is part of the endocannabinoid system. It's just too late for me. Anyone who has enough time should get cannabis oil.

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