Good endocrologist

Hi everyone,

I'm new here, but I'm already learning so much from fellow members :)

I was diagnosed with ME/CFS many years ago, and i've been struggling since, however I've never felt as ill as I now feel. From past private testing, I know that my adrenals and mitochondria are really struggling, and recent bloods are not within range. I've lost faith in the diagnosis and need to explore my symptoms further, and secretly hope that I actually have something which is treatable!

I would be so grateful to anyone who could recommend an endocrologist, and immunologist in the York area.

My best wishes to you all!

Lynn

Recommendations via private messages please, in accordance with posting guideline #25, thank you.

healthunlocked.com/thyroidu...

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  • Welcome to the forum, Lynndeb.

    Email louise.warvill@thyroiduk.org.uk for a list of member recommended endocrinologists.

    If you post your thyroid results with ranges (figures in brackets after results) members with advise whether thyroid is optimally medicated.

    ____________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hello Clutter,

    Many thanks for your reply. So far they have only tested TSH, which was 2.1 (0.55-4.78) and T4, which was 12 (9.0-23). These were done in July, and were not tested in my most recent bloods. I shall ask for them to be redone.

    My very recent bloods indicate few 'below range', which are:

    Red blood cell count 4.12x10^12/L (4.2-5.4)

    Total white blood cell count 3.3x10^9/L (4.0-11.0)

    Neutrophil count 1.3x10^9/L (2.0-8.0)

    Above range:

    Serum cortisol level (XE2xW) 682 neologism/L (150.0-650.0)

    The other comment was that they found mild neutropenia' whatever that is!

    Vitamin D is 97 nmol/L >50 no lo/L (this is since taking 2000iu about 4 weeks ago)

    B12 381 ng/L (211.0-911.0) (this has hopefully increased due to a 2 week course of 1ml tri-weekly injections)

    Ferritin (XE24r) 68 ug/L (20.0-291.0)

    Serum C reactive protein level (XaES5) 53 U/L (25.0-200.0)

    I'm short (!) 5'2" and my weight in June was 8st 6oz, and I'm now only 7st 6oz, which is worrying.

    Please know that all comments, or observations would be gratefully received!

    All the best,

    Lynn

  • Lynn, your low neutrophil count means you have mild neutropenia. Thyroid levels are euthyroid (normal) but TSH >2 is a sign your thyroid is beginning to struggle. Supplementing 200mcg selenium can help support thyroid.

    This link will explain what your full blood count evaluations mean labtestsonline.org/understa...

    VitD 97 is good and you should continue supplementing until April to maintain the level.

    B12 381 is low. PA Society advise 1,000 is optimal. Supplement 1,000mcg methylcobalamin sublingual lozenges, spray or patches and take a B Complex vitamin to keep the other B vits balanced.

    Ferritin could be higher. Halfway through range is optimal. Supplement Ferrous Fumarate and take each iron tablet with 500mg-1,000mg vitamin C to aid absorption and minimise constipation.

    Ask your GP to do a coeliac screen to rule out gluten-intolerance which can cause unwanted weight loss.

    ____________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Clutter, thank you so much for so generously sharing your knowledge with me. I'm at a loss for words because for so long, well until my post, I've felt like I've just been grasping for straws, but now I feel more in control, and armed with a plan of action.

    If I could ask you one more question... I have just begun to take Dr Myhill's Basic supplement package along with her mitochondrial package, I wonder if the supplement cocktail will be too great, and if I should perhaps try to remedy the points you mentioned, before progressing with with her packages?

    With my sincere thanks.

    Lynn

    Ps... will definitely ask for a coeliac test on Monday.

  • Lynn, I don't know what or how much is in either of Dr. Myhill's supplements but there's rarely enough in a multi-vit to address low vit/min levels.

    _________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thank you Clutter.

  • ME/CFS is referred to in the US as Fibromyalgia - ( learnt form Dr Barry Durrant-Peatfield's book - The Thyroid and How to Keep it Healthy )

    I was diagnosed with Fibro in 2000 and Hashimotos in 2005. Since achieving optimal treatment for the thyroid I do not suffer with the widespread aches and pains and of course the fatigue associated with the syndrome.

    I understand where Dr Sarah Myhill is coming from with her book - Mitochondria not Hypochondria ! - of course every cell needs energy - but then so does EVERY cell need the thyroid hormone T3. So first of all I would check your levels of FT3 - and if they are low in range then you have part of the answer.

    Also have tests for VitD - B12 - Iron - Ferritin - Folate if you have not already done so. In my non-medical opinion they are the building blocks of our health and without being OPTIMAL can cause many problems in the body..... This I have learnt after 60 years of struggling with my health. Am sure had I attended a GP surgery regularly I would have been diagnosed with ME ( my cousin was ) - however I often became seriously ill and was whizzed into hospital for various long stays - surgical interventions - but absolutely no answers that I could run with.

    So posting your latest test results here will enable people to help you - Endos are not always well informed about thyroids - they seem to mostly focus on Diabetes - so I have read :-(

    I am not a medical person - you can click onto my name and read my edited profile and my journey to wellness....

  • Hello Marz,

    Firstly, I love your geraniums, they're beautiful.

    Thank you so much much for your very useful reply, in response, I have posted some of my results under Clutter's message.

    It was very interesting to read your bio and to learn of your 'battles' and your ultimate triumphs. I am happy for you, and encouraged by your good health.

    My gut feeling is that my 'challenge' could also be an auto immune thing, and I'm a great believer in treating the body as a whole. We're about the same age, but I don't look as healthy as you, but I do run a holiday cottage, and so I can imagine the dedication and hard work required to run a guest house, never mind the olives, and I love the fact that you started teaching yoga at 65! I've wasted far too much time being ill, I still have goals to achieve, and you are an inspiration.

    Very best wishes,

    Lynn

  • Hi Lynn

    Thank you for your reply. Do hope you find some answers - Clutter has given you some ideas I am sure :-)

    I do hope you will find an answer soon and be able to sort things out - it does take time to become unwell and also to find wellness. At least as we age we become slightly more patient and realise there is no quick solution.

    Yes our little house is self-catering - but there still seems to be a million things to think about - and of course keeping up the standards ! We also have a studio - which seems really popular even though it is part of our house - but it is right next to the pool !

    Will keep a look out for your posts and hopefully read of your good progress !

    Geraniums not so good at the moment - have had to replace those gorgeous ones - and they have yet to mature !

    Warm wishes from rainy Crete....

    Marz

  • Hi Lynndeb

    I was diagnosed with hyperthyroidism in2004 I was really I'll for about 9/10wks a year later after no improvement in symptoms I was sent back to another endo who said your bloods are normal goodbye.... went back to docs she then sent me to a specialist at Newcastle within 2 wks I was diagnosed with CFS/fibromialgia--been living with it since diagnosis but about 2years ago I started with symptoms of hyperthyroidism again --I had gone overactive but my levels returned to normal after six wks,,,I'm still having symptoms endo said she thinks I have thirositis,,but no treatment even tho I am symtomatic...doc keeps saying well it must be your CFS that's causing your symptoms no way!!! I know those symptoms..what I'm saying is trying to find a good endo is like winning the lottery all the ones i have seen have just fobed me off because my bloods are within normal ranges even with symptoms,,,I do hope you get sorted...but quite honestly the endos I have been to confuse the symptoms of CFS as do doctors...no fun for us who are genuinely suffering

    Good luck :-)

  • Hi Birkie,

    Thank you for sharing your experiences with me. I am sorry you are having such a battle, but I obviously do understand that CFS is a very 'handy' diagnose to be used when bloods are 'normal'. Why do so few recognise that ranges differ, as do our bodies. Have you had a look at Dr Myhill's site., which is very interesting.

    I'm going to take Clutter's advice and see how I feel on her suggestions,

    I wish you much luck 😊

  • My T4 levels are around the same as yours, my TSH is slightly higher but within range - and I have a diagnosis of hypothyroidism. The doctors tried to convince me that I had CFS because my thyroid levels are 'normal'. I refused to accept this. I have started a thyroid medication containing T3 and boy did it make a huge difference to me especially with fatigue. The point is that everyone is different. Some people can function normally with these kind of hormones levels but others - like me - need higher levels.

  • Vienna2010, I am so grateful to you for posting this information. From how I feel and what I read, I think I too, might have hypothyroidism, and

  • Whoops, it posted before I'd finished. Thank you so much, I will certainly not give in any longer.

    Best wishes,

    Lynn

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