Hi, Tomorrow is the day of my TT and frankly I am so scared. I hope that this is going to sort things out but fear it could get worse.
It is going to be removed because I have a rather rare form of Graves disease that throws me from hyper to hypo (via alternating stimulating and inhibiting anti-bodies). For 2 years, I have been like a yo-yo with doctors only reacting to blood tests with the prescription of either carbimazole or levothyroxine. I thought I was going mad, I put on 20kg in 2 years and so depressed about it.
I am scared of report of further weight gain after Thyroidectomy and the difficulty in having the proper medicine prescribed post operation. It sounds like most endocrine prescribes T4 because that's basically all they can do.
What is your experience?
Thank you
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lavendergirl
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Rare indeed. My endocrinologist only seen 3 in his career. I was diagnosed with serious hypo to start with (TSH 96, no function whatsoever) after complaining of crippling cramps, no bowel function. Put on Thyroxin, all well initially but then got thyroid storm fit and serious hyper diagnosed. Got accused by my GP of overdosing or taking internet supplements. Finally got diagnosis of graves antibodies and carried on yo-yoing. Imagine symptoms of hypo then hyper then hypo. Loss the will to live. Even iodine 131 is not an option because if one bit is left, antibodies will play havoc with it. Surgery is the only option
That doesn't tell me which antibodies were tested. For Grave's the antibodies are TRAB or TSI. For Hashi's, TPO and Tg antibodies. Endos often don't seem to know the difference. But, it sounds to me more like Hashi's than Grave's. You really ought to check up which antibodies were tested.
Yes, it means it's not a rare form of Grave's. It mean you have Grave's and Hashi's. Which is relatively uncommon, but not unheard of. Although, obviously your endo has never heard of it!
After a TT, the Hashi's antibodies - Thyroid Peroxidase - should go right down. But, the Grave's antibodies - TSH Receptor Antibodies - will still be there.
I didn't say I didn't think you should have it. I don't know. I've never been in that position. But, what I would recommend is getting a treatment plan, in writing, before the operation. So that they can't fob you off afterwards. Because, as you said, they're very eager to get you to have the op, and then don't know how to make you well afterwards.
Have you tried block and replace? Where you take carbimazole to stop the thyroid producing hormones, and then take thyroid hormone replacement to replace them.
block+replace, yes, done it but I did to react well to high dosage carbimazole with difficulty breathing and they suspected growing liver problem, perhaps because I have Gilbert's syndrome. I think I got where I am now because they ran out of option for me until new methods to deal with immune system are developed. To be honest, I was not so keen to have Iodin 131 treatment as I believe I had enough radio-active rays put in me for a lifetime when they treated my cancer.
Like greygoose says, what antibodies were tested? If it were me, I would want to know what biochemical evidence supports the choice of thyroidectomy. I have never heard of Graves disease making the thyroid underactive. On the other hand, Hashimotos thyroiditis is known to cause spells of too little and too much thyroid hormone being released. I would want clarity before having thyroid surgery.
I know. They mention that I might carried antibodies from both. Whatever it is, treatment can only be reactive and this leaves stunned. It all happened just after radiations given after cancer...
On the eve of my operation, I was looking for a bit of support and information on post TT.
I'm not a doctor, after suffering like I did (as though my cancer was not enough), I had to follow advice of the professionals with a condition like mine.
Sorry, I didn't realise the op was tomorrow. Obviously you don't have much time to sort things out first. However, when you're feeling a bit better you must do your homework so that you understand how the treatment should go, and can take charge of your health.
Thank you. It was interesting exchanging with you. You confirmed the Grave+Hashi situation. I should have done more research on my own but I feel that my cognitive abilities have been diminished with all this. I put most of my efforts in trying to have my condition understood and the rest to carry on working and being a good mum. I am truly exhausted but feel that the fight is not over yet. Next, will be finding the right treatment I guess
Yes, it is difficult when your hormones are unbalanced. It affects just about every aspect of life. But, we can help you find the right treatment, once you're over the op. Take care.
The worst part of the operation is the thought. It will soon be over and you'll be back at home feeling like a million dollars.
Having both diseases certainly will have made your journey to this point more difficult but surgery should make you feel a great deal better. In my case, I felt like the world was lifted off my shoulders the day after surgery.
Take your time to heal and ask as many questions as you need after.
I was prescribed levothyroxine. 150mcg initially and then reduced to 112 mcg over the next year. I was 5ft 6in and weighted about 9 st at the time of the operation. I mention this because levothyroxine dosage is sometimes measured by your weight but not all endo's us that method. I would think, that initially they will give you a higher dose than you need and then reduce it over time.
You should will feel great after the operation, so enjoy it.
Make sure you get a copy of blood tests from here on in, so you can monitor and note how you feel. A
Good luck for your op tomorrow. You’re bound to be anxious and it sounds like you have had an awful time dealing with all the ups and downs your thyroid has thrown at you. This time next week the op will be behind you and your journey to getting well will begin. I wish you all the best. xxx
It’s probably not the time to think about another option but did they not try block and replace? Ie carbi and levo at the same time?
I am sure the op will bring welcome relief though and will have one problem to sort rather than the fluctuation between the two.
It is suspected that I have both Graves and hashis and have just come out if a hyper phase and have become hypo again. Its a real worry as I suspect it too will be difficult to control.
Block+replace was not successful. I hope you can have better care than me. Thank you for your message
Just to say good luck with your TT I had mine done in Oct 2015 it's a learning curve. The only way I have become well again was to join this site and ask questions and then follow the good advice given. I know nothing regarding your other problems, sorry.
Operation went well (apart from huge drop in BP and HR). My great surgeon saved all parathyroids so no calcium issue, my scar looks good (all things considered...) if a bit itchy and my vocal cords have not suffered. The job can't have been easy because of previous trauma in my cervical spine preventing neck movements. Apparently the gland was "very inflamed and was stuck to surrounding tissues with multiple tortuous draining veins".
I am now taking Levothyroxine and hope that the type/dosage will suit me. I will know more after a few weeks of treatment, I guess.
My problem now is, in term of endo care, that I have landed in a "no-man's land".
The NHS endocrinologist has taking me off her books because I went private for the operation, the surgeon is good but is no endo really and my GP is useless and downright unpleasant (he accused me of overmedicating when I initially went from hypo to hyper because of anti-bodies and he recently refused to issue my post-op level of levothyroxine, questioning "why I should take so much", ignoring that I had TT).
I guess I will have to pay to see private endocrinologist (this is not covered by my insurance). And on for another battle.
Well, 2 weeks later when I went to post-op with the surgeon, he announced that histology confirmed what he thought: my thyroid showed signs of both Hashimoto and Graves but that there also was a cancerous tumour on the third “pyramidal” lobe of the gland (some people have this extra bit).
I should be glad that it was removed but the news occurred only 2.5 years after my endometrial cancer and it is a shock I didn’t need. We are so vulnerable to this wretched disease.
In any case, I am so glad that the gland and all this rubbish are out.
I am on Levo 150 and even if my GP is the most unhelpful (he refused to give me supply for more than 1 month even if I told him I was going abroad for 2 months), I can get supply in France easily (I’m half French and often go there).
I don’t seem to be affected by differences between brands and now just enjoys having a steady supply of thyroxine after years of yo-yo between Hashimoto and Graves.
What a relief! It is by no mean perfect but so much better that I can only be grateful even if I was scared the day before the op (and I’m rid of the cancer, that’s a great bonus).
So my experience would advise you to fear not. A TT is not so bad. Just make sure you have a great surgeon who does it often and knows his business.
The only trace of the op is that I cannot really shout loud anymore (calling the dogs home is a weak display). And that’s it.
I am a much happier person now.
Good luck, whatever decision you make. And ask questions.
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For Grave's the antibodies are TRAB or TSI. For Hashi's, TPO and Tg antibodies. Endos often don't seem to know the difference. But, it sounds to me more like Hashi's than Grave's. You really ought to check up which antibodies were tested. 
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