Should I have been seen by an endocrinologist?

Hi, I am fairly new to this site although I was diagnosed as hypothyroid by my lupus specialist about 10 years ago. Within about six months I was on a dosage of 150mcg levothyroxine, which I still take.

In all this time I have only seen an endocrinologist twice for menopausal problems and not at all for thyroid. I make my own appointments twice yearly for a thyroid blood test at my local surgery. Nobody has commented at all if I am out of range, which one test is regularly, (sorry not sure which one).

My rheumatologist, who must get these results too has also said nothing more.

It is only reading the posts of others here that I am beginning to wonder if I should be asking for a referral? Is this normal?

11 Replies

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  • Have your symptoms changed?

  • It is difficult to say as I have also recently been diagnosed with fibromyalgia, which is a bit confusing differentiating between that and lupus as well.

    I am definitely slower, more general aches and pains and fatigue. However I am aware of a crossover of symptoms with each condition so I am at a bit of a loss as to what is which. (If that makes sense)

    That is why I am wondering if I should be seeing someone who could pinpoint what (if anything) is happening to my thyroid.

    Hope that makes sense. :)

  • Maybe get your result printouts and find out which is out of range, if your thyroid meds were changed up or down you might see a difference. I thinks its difficult to know whats causing what as you say, i have cfs and fm or so they say along with underactuve thyroid and dont know which is the worst.Does lupus cause pain as well as fm?

  • Definitely, and extreme fatigue too. The lupus was diagnosed first, then I had a knee replaced due to arthritis and I just never "picked up". I'm not sure if it was the trauma of the op or a natural progression of my lousy immune system, but my rheumatologist had me tested for hypothyroid and fortunately started treatment straight away.

    The combination of all this had me sent to the rehab unit of the local hospital for two weeks complete bedrest. I initially refused to go saying I could easily rest at home but in the end it was too much to cope with.

    I changed hospitals and gp about seven years ago when we moved, so that is why I am wondering if I am slipping under the radar so to speak. I will have to get the results and post them here.

    I am also a little anaemic which I have noted in various posts here, can affect the absorption of levo.

    It is hard to know what is going on, just wish it would stop!

  • I sympathise with your concerns as I was diagnosed as hypothyroid about 12 years ago and more recently with RA. Now this is under question and thinking it might be Sjogrens Syndrome. My ANA is negative or my rheumatologist would have thought I had Lupus. But the more I learn about the thyroid the more I feel it could be responsible for and switching to natural thyroxine such as Armour might be the answer and get me off the Hydroxichloraquine plus other stuff. Currently struggling with itchy scalp, hives, very dry eyes, icy cold sensation in legs and freezing white toes. Where the RA has gone who knows?! So many symptoms overlap with these conditions. I've never seen an endo either and my rheumatologist never mentions my hypothyroidism but my GP has always dealt with my Levothyroxine dose - I think this is normal and not the job of a rheumatologist - although I'm impressed at the holistic nature of yours - might be better than seeing an endo as well? X

  • Hi, just read your post and think that you need more meds too. Itchy scalp, hives, and dry eyes are all symptoms of under. Freezing white toes could be raineuds disease.

    Jo xx

  • Yes I think it is all autoimmune stuff but have decided to tell my GP that I want to/ intend to switch to NTD. I will explain as best I can, be firm but try a charm offensive to see if he will help me with dosage and perhaps even prescribe it. It just can't be that expensive - the RA meds I quit five months ago cost the practice £85 per month so I'll remind him of that if he is disobliging! X

  • Many of your symptoms would indicate that you need more thyroid medication (or a different medication). Doctors tend to determine how much to give by the results of the blood tests, but this is not good. Your symptoms have to be the major factor in determining how much you need.

    It would be good for you to see a good endocrinologist. Unfortunately many are not much help. You can request a list of endocrinologists and doctors who others have recommended through Louise on the Thyroid UK website.

  • Thanks but I can't afford to go private as I live in Orkney and see a private endo as well as an NHS rheumy. Travel alone would make this too much for me just now.

    Thanks to you all and your knowledge, support and suggestions I have decided to tell my GP that I intend to switch to NDT when I see him tomorrow morning. He probably won't like it as its an independent practice and he is very mindful of the budget as senior partner. But I will be firm and explain my reasoning as I did with the Vitamin D. I will tell him I plan to do this anyway but if he would support me by prescribing it himself or referring me to an endo then all the better! X

  • There is also a list of NHS endos, with a few in Scotland, including one in Elgin.

  • I think one does maybe come up here sometimes but not sure - maybe have to be sent to Aberdeen. Can't see my GP referring me though. Will let you know how I get on! Thanks x

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