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
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Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With Active B12 result below 70 recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
I bought a B - complex from Holland & Barrett just days ago as I’d read things about making sure all the B vitamins were in good levels was important, but I’ve read the one I bought and it has folic acid in it, so I may source a different one. I’ve been on the high vitamin D dose for over 3 weeks now so may introduce B complex when I source an alternative
The omeprazole had run out (originally 1 month supply at start of Dec), but was started again only days ago as ENT had said I showed evidence of mild reflux from a throat endoscopy.
I didn’t really feel like the PPI did anything the first time and wasn’t really happy to be going back on, but then thought I was being silly so started it again. I think I will stop again until I read more, the last thing I want to do is make things worse.
My throat issues and burping has always been different from day to day. Some days with barely any signs and others with more severe symptoms. I never considered diet, I thought maybe stress was flaring it up.
Only add one supplement at a time and then wait at least 10 days to assess before making any other changes
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thanks for all the info, I have been reading through and will continue to do so. I ordered the private Coeliac test you listed in case my GP is resistant to the idea (has been for other things, that’s why I got my own blood test previously).
I believe things are moving slower than normal, I had a blood test on Jan 15th for antibodies and waiting to hear from endo
So it sounds like things have moved quite fast, 8-10 weeks for the biopsy result maybe this is standard, fingers crossed they can refer you once this comes back. I don't know much about nodules but it sounds like there are a few things going on like you say some may be unrelated. Main thing is it sounds like you now have a good GP and it's good you took the private biopsy to speed things up ...but sadly NHS stuff is slowed down
Both the blood test detailed above and my biopsy were private. The GPs only ever tested the thyroid hormones and because were in normal range wouldn’t investigate further. Never suggested vitamins etc. That’s why I did the private bloods. The ultrasound they ordered was because of my swallowing issues, but they didn’t at that point believe it was anything to do with my thyroid.
You have not had your antibody test results? Yes, understandably the NHS is slow just now. Everything is just such a worry so things moving slowly increases stress (for me anyway) so it’s doubly hard.
Yeah neither my GP nor endo consultant will test vitamins! My consultants also works in the private sector aswell as NHS.
I may get a private one for vitamins. My GP first tested thyroid, repeat after 8 weeks, more overactive so referred. Only once referred do they test antibodies. I guess it is understandable they don't test for every single thing at the start, but more difficult for people like you with something more underlying!
I did ask the consultant why not test vitamins or ferritin and she said it is not needed, I do think they must know there stuff. It takes years to be a consultant! I just don't know why you get so much conflicting advice online, it makes everything more difficult as when you tell the docs about this they're of a different opinion!
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Do healthy thyroids ever just have goiters?
GP finally referred me & I may have thyroid cancer
Should I see a specialist for a thyroid nodule and symptoms?
Goitre? Nodules? WBC counts?
Can it still be these nodules causing choking?
