I have Hashimotos. According to GP my levels are good, but I think there’s a little room for improvement.
About 18 months ago I had a one off appointment with an endocrinologist because of a few concerns over my cortisol levels (which have since resolved). As it was during covid it was a video appointment. I mentioned a tiny lump I could feel under my skin around my thyroid area and she was very dismissive and said it was nothing to worry about. This was without examination, merely based on my description and pointing to it.
At that point I had had it for about 6 months and it had grown from the size of a petit pois to a pea. It is now more like a chick pea size. It isn’t painful but I’m “aware” of it, if that makes sense, it’s fairly firm. I have lost a lot of weight (6 stone) in the last 8 months so it is a bit more noticeable.
I’ve read up on the NICE guidelines re lumps on neck which seem to suggest it should be referred, but not sure whether my hypothyroidism means it is probably a nodule and therefore nothing to worry about?
My maternal great aunt had thyroid cancer which makes me a little paranoid. Plus I have pain in my left shin that isn’t shin splints and is equally/more painful when resting and that has sent my mind into overdrive.
I spoke to my GP surgery and they dismissed it as non-urgent and said once they reopen for non urgent appointments I can make one (they have seriously cut down appointments due to covid booster drive) but that its likely to be Feb.
Should I be pushing to be seen sooner or am I being paranoid?
I’m not under an endocrinologist - my Hashimotos was diagnose by the GP and the appointment mentioned above was a one off due to a temporary unexplained blip in my cortisol levels but I was discharged.
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likeafinewine
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Do you always get same brand levothyroxine at each prescription
Are you still on 100mcg levothyroxine
Suggest you get FULL thyroid and vitamin testing done
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
On your profile you've not given any background to finally being diagnosed as hypothyroid.
It makes it easier in the future if you have a question that members can read your background without you having to repeat it
I am not medically qualified but I think if you have a a lump that it should be checked by an Endocrinologist, so ask to be referred. If you weren't keen on the previous Endo request an alternative.,
This is the method recommended if you are going to have a blood test for thyroid hormones.
Always make the very earliest appointment, it is a fasting test (you can drink water) and don't take thyrid hormones before but afterwards. Also request B12, Vit D, iron, ferritin and folate to be tested if you've not had them recently.
I will have to push harder but don’t hold much hope. Our surgery “patient advisors” (I like to call them gatekeepers) insist my concern isn’t urgent and can wait until February (she said likely to be mid Feb!). I live in Devon so not sure how much choice of endocrinologist there is.
My wife was recommended to (name removed by admin) a private endocrinologist in Bristol who arranged a Zoom consultation and blood tests and arranged for my GP do do some, to save money. I would highly recommend. Good luck.
Patient Advisors can only help if they actually have had the condition themselves. Reading from a pamphlet isn't quite the same thing as self-knowledge.
First thing is to emphasise that you are worried about the lump that is increasing in size (I assume - hopefully you will get an earlier appointment).
Do you follow this advice when you are going for a blood draw:-
1. The very earliest appointment.
2. Fasting (you can drink water).
3. Don't take thyroid hormones before the test - but afterwards.
4. If you've not had Free T4, Free T3 and thyroid antibodies tested, also request these.
Are thyroid hormones stabilised or have you been having Hashi flares? Has weight loss been intentional?
Malignant thyroid nodules are rare but any lump should be properly assessed, and given there has been thyroid cancer in your family I would absolutely insist on a referral.
Resources are stretched at the moment because of COVID, and you have Hashi where lumps are incredibly common due to fibrosis of the gland, but your health problems are as important as others and a GP is only that, a 'general practitioner' who has no right to deny you investigations as laid out in NICE guidelines. Hopefully you will be offered a scan and possibly an FNA if deemed necessary.
I have to add a bit of context to how most GPs interpret blood tests - they generally don’t. They read off the lab sheets. The labs push through hundreds, if not thousands of samples in a week and the results are printed out on a general information sheet. There is nothing bespoke about it at all. When my lab results have been in range I have never been asked how I actually feel - I’ve just been told the results are ‘normal’. The range will mean different things to different people - we do not all respond to these tests in the same way.
The trouble is the majority of GPs don’t understand what the range is there for - it’s a guide only! Sadly most think the range is a ‘cup’ and that the patient is a ‘ping-pong ball’ and if they get the ping-pong ball in the cup they win a prize.
They simply do not understand that you can be on completely different doses at either end of the range and be hypo (at the lower end) and be optimal and well (at the upper end) OR, heaven forbid, because of other confounding factors you may sit outside the top of the range before you feel well OR (panic stations) the range might not apply at all! 😱😂
It is also important to distinguish between ‘normal’ and optimal. The term ‘normal’ (note my use of the inverted commas) it is a misused term that you should be wary of. What should be aimed for is OPTIMAL.
Only two little words, but they mean very different things. In fact one could say ‘normal’ is meaningless. GPs who don’t know what they are doing generally tell you that you are ‘normal’ if you are in range.
Symptoms should be the most important diagnostic tool, but it sits at the bottom of the list as an annoyance. Nothing annoys a doctor more than having a lovely set of blood results, all ‘normal’ and the damned patient goes and spoils it all by having symptoms! 😂
Ever been told by a GP “Your symptoms should have cleared up by now” or something similar and made to feel the failure for not having responded to their rubbish treatment??
Vitamins need to be higher than just in the bottom of the range, as SlowDragon has advised. GPs in the main have no idea on this either - refer back to cup/ping-ping ball scenario.
Finally- Get PRINTED results, don’t rely on Patient Access- my Patient Access is patchy and things have been altered/disappeared (yes really). I have screenshots 🤔. I also have my complete set of tests- get copies of everything keep records 😊👍.
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