Finding the best endocrinologist for GP referral in North West?

Hi everyone, I am a newbie on here. I have been on 100mg Levo since being diagnosed just over 2 years ago. However I just seem to be feeling increasingly worse, despite recent bloods being acceptable TSH 0.83 (0.3-6.0), this was the only test the GP did apart from Vit D.

My symptoms especially the fatigue and various muscle joints are just getting worst. My GP has agreed to refer me to an endocrinologist and I want to make sure I see someone well skilled in this field. I would be happy to travel if you feel able to give recommendations??

I also would like to know what to expect, will I automatically be offered all the correct tests, do I need to do more of my own research? As without it, I wouldn't have got this far.

Many thanks

6 Replies

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  • Diane23 Email louise.roberts@thyroiduk.org.uk for the list of thyroid friendly endos. As for feedback from forum members before booking an appointment - members will have to reply to you by private message.

    Have you ever had FT4 and FT3 tested, or thyroid antibodies?

    What was your Vit D result, muscle/joint aches and pains are indicative of low Vit D.

    You can actually do a private test at home which covers all relevant thyroid and vitamin and mineral tests, easy to do fingerprick test or venous blood draw if you can get it done. Blue Horizon Thyroid Plus Eleven or Medichecks Thyroid Check UltraVit both do them. See details on Thyroid UK's testing page - thyroiduk.org.uk/tuk/testin... Medichecks have 15% discount until 24th March.

  • Thanks I will email Louise now. I have not had my T4 done since 2015, I didn't know GP stopped including it, as used to accept the usual "its all within normal bounds" response unknowingly. I can't find any mention of the T3 on the print out so guessing it was not done.

    I am still trying to get a reasonable basic understanding, not the easiest of subjects to grasp!

    My vitamin D has been monitored regularly for the last 5 years and I take a higher dose supplement throughout winter. It was 68 last time so no I don't think that's causing the pains. Its the randomness that concerns me - I have had neck and shoulders for over a year, then wrists (not carpel tunnel, had the tests), left ankle, then right, throbbing left leg - sometimes around calf and sometimes above thigh. Last one is my coccyx so had to purchase special cushion for chair in work and very painful.

    I have had some info through from the Thyroid Ass and realise I can pay, but am on limited budget and do feel that's what our health service should be providing me with, but thanks.

  • Diane23 The recommended level for Vit D is 100-150nmol/L so you could do with nudging yours up a fair bit. A short article on Vit D Deficiency and the problems it can cause - vitamindcouncil.org/about-v... The measurements referred to in their links are in ng/ml and we have to multiply by 2.5 to get the unit of measurement used here in the UK - nmol/L, so our recommended level of 100-150nmol/L is given as 40-60ng/ml. You might find that doing some research on symptoms of Vit D deficiency may throw up some similarities, eg fatigue, tiredness, bone and back pain,etc.

    At the moment you could do with taking 5000iu D3 daily then retest in 3 months. You might be up to the recommended level by then and could reduce to a maintenance dose of 1000-2000iu daily. I'm surprised that your GP is monitoring your level, they rarely do testing now because of the expense.

    Also, and your GP won't know this because they aren't taught nutrition, taking D3 aids the absorption of calcium from food. Unless the calcium is directed to bones and teeth where it is needed, it can get deposited in arteries and soft tissues where it can cause problems. To be sure this calcium is directed to bones and teeth we need to take K2-MK7 when taking D3. There are also other important co-factors when taking D3, magnesium being one of them and most of us are deficient in it so it's a good supplement to take

    vitamindcouncil.org/about-v...

    I think all of us on the forum will agree with you that our health service should provide us with proper testing and care, but the reality is that our NHS is broken and failing so many of us. And finding a doctor who properly understands how to treat Hypothyroidism is like looking for a needle in a haystack. Most of us arrived here because we can't get well with our GPs, many of us have had to resort to helping ourselves or stay sick.

    I hope you find a good endo, when you have your appointment ask for the following tests

    TSH

    FT4

    FT3

    Thyroid Peroxidase antibodies

    Thyroglobulin antibodies

    And because optimal (not just within range) levels of vitamins and minerals are essential for thyroid hormone to work properly (our own or replacement) then also ask for

    B12

    Folate

    Ferritin

    along with your Vit D.

  • Fibromyalgia?

  • Hello Diane23,,,your gp will usually refer you to the nearest hospital,,,there maybe cope for further affield,,but with things as they are in the nhs,,your local hospital maybe a good place to start with getting a more expert opinion,,and getting better help with your condition,,,I have an underactive thyroid,,and am on 150mg of levothyroxine per day,,,and have been for a while,,,at my last TFT test, it suggested that my dose make need lowering,,,but I was not keen as my condition seems 'ok' at the moment,,,see what your local hospital offers in the way of help and appointment soon,,,,take it steady and don't rush about and tire yourself out,,,,ttfn from karen.

  • My friend likes her endo at Arrowe Park hospital.

    I'd advise avoiding The Royal, altogether!

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