Here we go again

[Yvettel]

Hi to everyone. I was diagnosed with Graves in 2014 and the support here was really helpful. It’s returned with a vengeance, and my carbimazole was increased in early May to 60mg. I’ve opted for TT this time around, hoping I’ll be ready for it in about 5 weeks as this is what my consultant has indicated. I’m looking for some advice if this timescale is realistic given it took an increased dose not too long ago to get levels going in the right direction. Oh and is weight gain a given after surgery. Thanks again for the support

[Greekchick]

Hi Yvettel:

First, really sorry your Graves has returned. I know how that feels! I had a TT 4 1/2 months ago for Graves with toxic multinodular goiter - just for background.

It is very hard to answer your first question about whether 5 weeks is long enough to wait for surgery. You would really have to see how you feel at that point. You have already been on increased carbimazole for almost 2 months and I am assuming you were on a lower dose prior to May - please correct me if this is wrong. I was on Tapazole for 2 years and in remission (doing well, no side effects and no symptoms) when my goiter suddenly doubled in size - I had become resistant to the Tapazole at that point and the goiter was crushing windpipe and vocal cords. So - no choice about surgery for me - pretty clearcut. I managed to avoid surgery for 25 years with my Graves - the last 2 on Tapazole, and was hoping to stay on that for longer.

You do not mention any other issues such as goiter or nodules. This might be a deciding factor for surgery. For example, size of goiter, number and size of nodules, whether nodules are hot or cold, results of FNA biopsy, ultrasound, etc. It's very hard to tell without the entire picture other than the effect of the carbimazole.

With respect to weight gain, I did not gain any weight at all - in fact I lost several pounds after surgery and in preparation for surgery, had lost 8 pounds before surgery that I had gained over a months' time from the extreme overeating due to my Graves. I believe, from what I have read on the forum in other posts, that people who are properly medicated are OK with respect to their weight. It is when TT patients are allowed to go very hypo because they are on the wrong meds or wrong dose (for example, like me, I don't convert T4 to T3, and so I am on both T4 and T3).

Hopefully you have a good endo who will run all the bloodwork necessary (T4, T3, TSH and your TraB antibodies and Tg for good measure). In a TT patient, TSH is meaningless because we have no thyroid to respond to the signal to produce thyroxine from the pituitary. So, any TSH reading is strictly from the medication and not from any ability on our part to produce it. You may be one of the lucky 80% of TT patients who respond exclusively to levothyroxine (T4) and not need any further meds. Most of the people on the forum are the 20% who need T3 or some other form of replacement hormone to function properly. I don't know if you are getting your bloodwork from your MD or you are doing it privately through Medichecks. If your MD is not going to run all the blood tests, then I would strongly suggest that you get them done yourself so you can see what is going on.

The choice of TT is a difficult one if your results are not clearcut. Life is very different without a thyroid and the adjustment to medications is far from simple. It is a tough surgery with, of course, the inherent risks of vocal cord and parathyroid damage. I had a skilled surgeon and came out very well from the surgical perspective with no damage to either. Recovery takes about 8 weeks total before you are better. Even if you are OK with just levo (T4), the adjustment period to find the right dose and for all systems to work again is about a year. I myself am doing reasonably well after surgery, but the road to getting the right meds has not been easy, even with a good and helpful endo who is prepared to prescribe what I need to get better. I am getting there, feeling better, and hopeful that I will be feeling much better soon. This is not to discourage you from doing what you need to do - just to be sure you are prepared. There is no right answer to your question. It is complicated. If you feel surgery is indicated, you are in the best position to make that decision with your doctor.

I wish you the very best of luck and hope you feel better soon. Sending good thoughts your way today!

[Yvettel in reply to Greekchick]

Thank you so much Greenchick for taking the time to give me a balanced and full opinion and perspective. I do have a large multinodular goiter that feels hot and tender. the worst symptom though is the weakness in my legs. When I had the diagnosis in 2014, I thought I'd give it a shot to see if I was one of the lucky ones that recover with medication. This time around I just want it to be gone so I think the option for me is surgery. I hope the surgeon has a talent for it! My faith in treatment has fallen, lost blood results, one result came back saying no further action when my levels were very high. Had I not have had this before I could have been in some trouble so my intention is to go down the private route.

Again, thank you, your response has been really helpful and inspiring, given what you've been through yourself.

[Greekchick in reply to Yvettel]

You are so welcome! I have answered posts with my experiences from TT surgery, so if you want the "history" of my surgery journey, just put my name in the search box and you'll find my answers to others. I wish you well and best of luck moving forward. Let me know if I can answer anything else specific for you.