Sorry, this is a long post! I am 35 and am lucky to have had really good health until recently. I lead a very active lifestyle (sea kayaking, running, snorkelling, hill walking) and eat a varied, healthy diet. There are now various issues (some of which I have found myself with private blood tests), but it seems far too coincidental that all of these things have just presented themselves at once and it seems that my thyroid is somehow involved. There are different GPs in this simply because I had issues speaking to the same one due to their availability etc and it was difficult to get one of them to take main responsibility for me and consistently see me.
It all started with problems swallowing, frequent burping for no apparent reason, forgetfulness and fatigue. The first GP (around the start of Dec 2020) thought it may be an issue with reflux through stress so started me on Omeprazole for that. She said she would do blood tests (not telling me which) just to check other things. After some reading, I asked for my thyroid to be checked as I suspected something thyroid related, and for my cholesterol to be checked as my dad had had an early heart attack (60 yrs, fit and healthy - had it at the gym) along with whatever tests they were doing and they agreed. This GP also ordered a chest X-ray.
Things then progressed where my neck was visibly swollen at the right hand side only and sort of squishy/bulbous. The same weekend I noticed this swelling, I felt very light headed on numerous occasions, always when I was exerting myself. I went to see a 2nd GP in person who wanted to look at my neck, disputed there was anything wrong with it (visually or to the touch), but agreed to order an ultrasound because of my issues swallowing anyway. Got my blood results back at this appointment, where I can't remember the other things they had ordered, but I was told my thyroid function was normal (no details) and that I had slightly high cholesterol (5.5 total, can't remember the specifics), but it was nothing to worry about. I was surprised by both of these things as a) there WAS definitely something wrong with my thyroid, despite the GP not agreeing with me and b) I lead a very active lifestyle and eat healthily, so even slightly raised cholesterol didn't seem quite right. All I was told to do was wait for the ultrasound.
Whenever I tried to exercise, I couldn't do anything more than walk on flat ground. My neck would sort of pulse and I would sometimes get shooting pains in it at the right side and feel light headed and severely out of breath if I tried anything more. I would fall asleep very, very early. My work was suffering and I was mixing up words and generally not managing to think clearly.
I was feeling even worse and went to a 3rd GP (again, not through choice) on the 29th Dec 2020 and he (with protest) agreed to refer me to ENT for investigation about my throat.
The next thing that happened was the 1st GP called over a week later to say my chest X-ray was normal. She also informed me that GP 3 had not in fact followed through on the referral as was in my notes, so she was doing it now. I was really not feeling well at that point so asked again if there could be anything at all wrong with my thyroid that they had missed with that blood test. I was categorically told no. I said again how bad I was feeling and they just told me I had to wait for the ultrasound.
I know someone socially who is a Dr so troubled them at this point with the same question about my thyroid and they said there were issues which would not show up in the traditional blood tests done (we just assumed they would be TSH, T3,T4 at this point as I had never been told). I therefore ordered a Medichecks private thyroid advanced functioning blood test myself.
The Medichecks results are attached as a photo. They showed Vitamin D deficiency and high thyroid antibodies. I gave these to my GP practice and it was the 2nd GP (who now finally seems to be taking sole responsibility for me) who called to put me on an intensive loading course of Vitamin D (50,000 IU once a week for 6 weeks, blood test to check calcium and kidney function after dose 4). I asked again about the antibodies, but she just said they wait and see what happens, maybe it will eventually push me into hypothyroidism, maybe it won't.
When my ultrasound came back, it showed a nodule on the right hand side of my thyroid, this was all that was written in the first report. I got my appointment at ENT (22.01.21) and they ordered a fine needle aspiration for the nodule to see if I need it removed, and told me that the ultrasound showed inflammation through the rest of the thyroid. They also carried out an endoscopy showing signs of reflux. ENT were clear that the nodule and my other issues were completely unrelated and that any of my discomfort/pain in my neck, the reflux etc were different issues, with the neck issues linked to the elevated antibodies.
Endocrinology are refusing to see me until the biopsy on the nodule was carried out and ENT had decided if they would need to remove it or not and I was told it would be a 13 week wait on the NHS. Out of desperation, I had the biopsy carried out privately last Thur (28.01.21). The night before the biopsy, I had incredible pain in my neck at the right side (thyroid area), with shooting pains going up my neck, and down my neck to the front and rear. I spoke to the lovely Dr who was doing my biopsy about this and he again said how inflamed my thyroid was and that from my files he had seem the elevated antibodies and that again, these, rather than the nodule were to blame for my pain and that I needed assessed by Endocrinology for that. I am told it will be 8 - 10 weeks wait after the biopsy results are received by ENT for them to call me to let me know if they need to operate or not so this adds more time that I am never getting to speak to anyone in Endo.
GP 2 has now agreed to test only my TSH again when I have my vitamin D blood tests next week (Mon 08.02.21) and that if that shows an abnormal level, she will write again to Endocrinology without waiting on the biopsy results, but if this is again normal - more waiting. There are no private endocrinologists anywhere near me (Dundee area), I believe the closest ones are Edinburgh and Glasgow. I don't have a lot of money, I am just desperate to speak to someone who can help.
Can anyone sympathise with my story so far or recognise any of my symptoms/experiences and link them with Hashimoto/Autoimmune thyroiditis? Is it true they just wait to see if the antibodies kill off my thyroid, without any treatment in the meantime?
I have also read about links between Vit D deficiency, reflux (or gastro issues more generally) and thyroid issues. No one as yet seems to be making those links for me, but I hope that when I eventually get to speak to someone in Endocrinology that it will all start coming together. Is it possible the reflux/Vit D are a separate issue again from my thyroid antibodies? I have read that reflux can simply be caused by stress and I was under immense stress when all this started, it just seems weird that is has come about at once. All of my symptoms have appeared around the same time and how I feel has really deteriorated since this all came to light. All roads seem to lead back to the thyroid antibodies?
Sorry, lots of questions. I am so new to this and have read so much conflicting information, it is hard to know what to trust. It is a very overwhelming and worrying time. Any help, suggestions or questions are welcomed!
***forgot to mention: barely any appetite just now also
Should I see a specialist for a thyroid nodule and symptoms?
Can my symptoms be thyroid trouble?
Feel so defeated :(!
Do I really need a biopsy?!
Multiple thyroid nodules
