Hashimotos....life after surgery.

[Mrsgee]

I have had thyroid problmes for years and on levothyroxine for the past 6/7 years under the care of my GP. Fatigue has always been an issue, but as a mother with a disabled son I just got on with life...busy, busy working and looking after the family, then about 2 years ago the fatigue seemed to take over coupled with joint pain day and night, heat intolerance and insomnia, but it was the fatigue that was the worst......I've not done proper housework for 2 years.....you know the deep clean kind. I had put the sudden change down to the worst jet lag after returning from Australia....but it never went away, I then went to the Dr who did all the usual tests altered the levothyroxine and this continued for the next 18 months, eventually in January this year I asked for a referral to a specialist as I was not able to get round a supermarket, fell asleep at my desk at work and did not feel safe driving due to being so tired, the GP said they had done everything they could and could not Do anymore so referred me to a rheumatologist, I saw him in February and he found a lump on the thyroid and referred me to a vascular surgeon who ordered scans and an aspiration, they found a second lump on my parathyroid and surgery was booked, I saw the surgeon for the results of the aspiration and scans and he said he was not going to re over the thyroid as it was attaching itself to my trachea and vocal cords and he considered it too dangerous as he felt I had a high chance of ending up with no voice and a permanent tracheotomy and referred me to an endocrinologist......never seen one before. The endocrinologist then said I would need to have the thyroid removed as I was having trouble swallowing and getting breathless, so he arranged for me to go back to the surgeon for a thyroidectomy, and that was done 4 weeks ago, I saw the surgeon 2 weeks post op who said the thyroid had nodules on and it had been sent to histology but they had sent it on for further investigations, the surgeon confirmed Hashimotos and said it was a difficult removal, I was in surgery for over 5 hours, he has arranged to see me again in 4 months, I am now on calcium.....as the parathyroid a came out as well as vitamin D. Since the confirmation of Hashimotos I've done some reading up as I want to know how to continue to move forward and manage whatever lies ahead and as such rang the hospital to see if the endocrinologist was going to follow me up, only to be told I had been discharged and if I wanted to see him I had to be re referred by my GP.....so of I went to the GP, who said there was no reason to refer me as I had no thyroid, my levels looked ok and all that was ended was regular blood tests via them!!! I explained I still have very sore joints and although I feel a lot better......I can now stay awake all day I still have insomnia the GP said all she would do was refer me back to rheumatology.......I will just add that on a visit to my GP late last year as I went into the Dr's office the first thing she said was what is wrong with your neck......I said oh nothing it probably just my thyroid playing up.....it was a goitre....I know this now, but she said I was probably allergic to a pain killer I was on, obviously this was incorrect......GP's have to know a little about a lot, at this time I was getting worse fast.....not knowing much about exactly the effects and impact of thyroid disorders I just accepted what I was being told......I was struggling to do anything by January and had been signed off work, not knowing if I would ever feel better I resigned from my job as my concentration levels were non existent......I can't help but feel that if I had seen an endocrinologist I may not have needed to resign as I would have had an idea of options and management. I am left now wondering if a rheumatologist is the right person to support me with ongoing management. The last 5 months have been hectic with rushed testing, being put on a 2 week rule and the thyroid removal I feel somewhat lost, it feels like the problem has been removed so there is no problem, all is fine.....your fine.......that's what I'm being told. Apologies for being so long winded but at the moment I feel I need to learn about life after a removal, should I be investigating diets, are there things I should look out for that could be a trigger to getting ill again......any advice would be so gratefully received.......thanking all in advance.

[BlueMundo]

Hi MrsGee what an awful time you've had and it sounds like poor management of your health by the GP too.

I couldn't see if you are now on thyroid replacement meds post op? If you have had a totally thyroidectomy you would surely need some replacement therapy for life?

[Mrsgee in reply to BlueMundo]

Thank you for getting back to me......I do feel I have been mismanaged, I don't like to run Dr's down but feel on reflection it was obvious the thyroid issue had progressed. My levo has altered so much over the years anything from 25 to 150 micrograms but now on 200 micrograms with supplements of calcium.....not sure of the dose as picking up prescription today and also vitamin D....800iu capsules. I understand I am still recovering from "major surgery" as everyone says but I don't want anything missed again and felt an endocrinologist would be the right specialist to advise on continued management.......or am I being over cautious?

[Clutter in reply to Mrsgee]

Mrsgee, now your thyroid is completely removed the Hashimoto's won't have a thyroid target to attack and may die out. However, if you still have some thyroid cells remaining in the the thyroid bed it may be enough to encourage further attacks so adopting a gluten-free diet may be helpful.

It can be difficult to manage calcium and vitamin D levels in hypoparathyroid patients so I'm surprised your endocrinologist discharged you so quickly. If you continue to feel unwell after 3/4 months on calcium and vitD I would ask to be referred back to endocrinology.

[Mrsgee in reply to Clutter]

Thank you so much. It's good to get things a little clearer.