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Dr Gordon Skinner, UK?

Discussion in 'ME/CFS Doctors' started by justy, Feb 24, 2013.

  1. justy

    justy Senior Member

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    Just wondering if anyone has any experience of Dr Skinner? He specialises in subclinical Hypothyroidsim and has seen a lot of M.E patients.

    My latest lab results show my TSH has gone up again, but still within normal range (2.39) and my Free T4 has dropped to my lowest ever level at 12.6 (reference range 12 - 22) over the years my T4 has fluctuated between 15 and 17, apart from all the usual classic M.E symptoms i now have hair falling out, more noticeably than normal plus even more weight gain - and that was on a paleo very low carb diet.

    I did a trial of Thyroxine a couple of years back, prescribed by Dr Myhill, i had a strange experience with it, and thought someone who specialises in that area specifically might help.

    The testimonials from patients i have read speak very highly of him. I am aware that he has been under various orders and restricitons by the GMC for some years, although i understand it is manily compalints from other GP's, not from his patients.

    I had high hopes to travel to Brussels this year to see Professor De Merleir, but i simply don't have the funds, or energy to contemplate it this year. I can't sit back and do nothing, so in light of my thyroid results thought it might be worth a shot.

    All the best, Justy.
    allyb likes this.
  2. Abha

    Abha Abha

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    Hi Justy,
    I don't have any experience with Dr Skinner but I read all about him in the past.I have autoimmune gastritis/pernicious anaemia/osteoporosis/hypothyroidism/parathyroid disease too....and all the problems caused by organophosphate contact(malathion in my case).I have attended Dr Durrant-Peatfield's Clinics(in Aberdeen)and I can give you info.on him if you so wish.You can contact me privately re that.Dr Peatfield has clinics all over the UK and he deals with CFS/ME patients too.
    justy likes this.
  3. Plum

    Plum Senior Member

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    Hi Justy

    Sorry to hear you can't manage to go to Brussels this year - I remember seeing a post of yours about it when I was researching Professor De Merleir a little while ago.

    I can't offer any help with the Dr yr hoping to see but just a couple of things I thought I'd mention which I found useful when I was researching thyroid stuff.

    This book taught me a lot:

    http://www.amazon.co.uk/Still-Thyro...0402/ref=sr_1_1?ie=UTF8&qid=1361804698&sr=8-1

    These guys have some interesting info on their website:
    http://www.holtorfmed.com/

    They also post interesting thyroid info on their FB page and from time to time have an online session where anyone can ask them questions on a particular topic.

    Have you looked into Perrin Therapy? I ask because since I've been having it I am able to tolerate supplements that previously made me feel very strange and had to stop them previously.

    Good luck with everything :)
    SanDiego#1 and justy like this.
  4. SanDiego#1

    SanDiego#1 SanDiego#1

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    Justy- Just wondering have any of your Dr checked you for Diabetes Insipidus for OI? Another Oddball additive to this crazy illness. However-mine was diagnosed about 3 weeks ago. I am to start on Desmopressin. My CFIDS Dr. said it would help POTS, DD, and Diabetes INs. It increases Blood Volume. Anyone taking this medication????
    Wating to see what results on Med is in about 90 days.Just hope I can take the med.

    San Diego
    justy likes this.
  5. justy

    justy Senior Member

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    I have my appointment with Dr Skinner tomorrow morning. I'm really looking forward to it, even though i am actually feeling quite a bit better these days. Went for a farily long walk today which was lovely, then we ended up in a pub for a hot chocolate and game of pool.

    I'm hoping Dr S can help me to improve further - i'll let you all know how it goes.

    All the best, Justy.
  6. Creekee

    Creekee Senior Member

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    Good luck tomorrow, Justy. Will look forward to hearing how it goes; thanks for sharing!
  7. clive powney

    clive powney Senior Member

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    Hope your appt goes well, I have my first one with him on 6th June. I have seen on the internet that when he was put up before the GMC for investigation, 2000+ previous patients wrote in , in his support
    http://www.yldonline.com/tpadocs/Skinner/
    My thyroid tests from over the years are (incomplete though)
    I looked back at my previous tests

    ..........2003 ..........2006 ...........2008 ..........scale
    tsh -----3.92 --------3.38 ----------1.75 ---------0.27 to 4.2
    t3 -------n/a ---------5.3------------ 4.9 ------------4 to 6.8
    t4 --------n/a -------15.5 -----------14.4 ----------12 to 22
    Thanks Clive
  8. EnduringAngel

    EnduringAngel

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    Can you let me know how it goes Justy as am interested in him.
    Been a patient of dr myhills for 3 years but am still so severely ill.
    I saw dr Peatfield twice, but was so not impressed.
    Been treating myself with thyroid meds, but its so scary want to find an NHS endo.

    A x
  9. justy

    justy Senior Member

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    Finally i have found the time to give an update on my Dr Skinner appt and treatment so far.

    The appt went very well - Dr S is a lovely man, very kind, sympathetic and laid back. He has seen a LOT of patients with M.E diagnosis. We went over all my history and he listened, cracked (bad) jokes and asked pertinent questions. His opinion, which i believe is well documented is that M.E/CFS is usually something else - very often missed thyroid disease and he mainly treats on this basis.

    He has a check list of symptoms that are all Hypothyroid symptoms and he asked me to tick the ones i had - i had so mnay it would have been easier to tick the ones i didnt have (about 3!) He feels that many cases of Hypo get missed since blood tests came in and Docs no longer treat by symptoms (since about the 60/s or 70's) He felt my symptoms were consistent with Hypo and we discussed trying meds.

    I already tried Levothyroxine a couple of years ago on Dr Myhills advice. This made no difference to me at all until i eventually started to show HYPER symptoms (but bloods remained in range) We abandoned the trial and Dr M suggested it was common in M.E patients to see an inability to tolerate thyroxine. Apparantly this is eiother because of a build up of heavy metals or adrenal issues. I discussed this issue with Dr S and he suggested we try T3 alone as i had the most chance of getting my GP to prescribe this on the NHS. I was a little wary of T3 and said i would prefer to try a Natural Dessicated Thyroid product such as Armour, which he thought was a good idea - but most likely would have to pay for private prescriptions all the time. He prescibed a low starting dose of half a grain for 4 weeks followed by an oncrease to three quarters as he knows i am anxious not to have any adverse reactions.

    I asked him about adrenal issue and he said my cortisol test from GP was in range but quite low and also my ACTH stimulation test result was the same. He concluded that we should try the Armour first - see how it goes and then discuss cortisol next time if necessary. I have heard he is not keen to treat adrenals but he did suggest to me that i may need a low dose steroid to help the Armour to work. This is not good news as i have had severe issues with steroid in the past which led to a near collapse of my immune and hormonal systems (happy days!) But at least he is willing to discuss and look at it.

    So, off i wnet, satisfied and with a little bit of hope (i try not to have too much as i am invariably dissapointed) At this point - end of May , beginning of June my health was the best it had been in 5 years - but i was under a lot of stress and working hard to finish my open university module, move out of my house into a caravan, fix my house up to reent to holiday makers etc etc - i was working very very hard and felt ok but strained. I had also started going out with a the car a bit more to take the kids to dance etc and going out a few times a week with family or firends - maybe i was heading for a collpase, but the collapse didnt come until i started the Armour.

    I began the Armour two weeks ago - couldnt cope with trialling it while we were moving out of the house - i needed to be able to cope. I decided to start at quarter grain as i was nervous about it. No adverse reaction, but my stomach kiccked off bog time and i had pain and diarrhea for a couple of days. After 3 days i upped to haldf grain and this was ok apart from i started to feel very very angry and wound up inside. After a couple more days felt jaw clenchingly aggro so had one day off.

    Druring the next 24 hours i calmed down and felt normal again, so resumed at half dose the next day. The aggro feeling did not come back, but i have been in a severe M.E crash since i began the medication - times when i was too exhausted to speak, cant drive anymore, cant go out, breathless, etc etc, eye pain and headaches returmed. Now i have severe left sided lower abdominal pain that has kept me awake for two nights.

    decided today to have a day off from all meds etc so no Armour, Iron, Co Q10 or omeprazole. I feel utterly exhausted and worn down - i look dreadful again and am having problems with my skin going hperpigmented in the sun again as well. My worsts and thumb hurt and my arms keep going numb - i think i may have carpal tunnel.

    Am seeing Dr S in the beginning of August and am determined to carry on with Armour until then - all too often i give up when things dont go well and i reallywant this to work.

    Sorry the post is so long - got carried away - not been on here much recently - firstly too well, then too ill!

    Hope you all ok.
    Justy x
    SanDiego#1 likes this.
  10. Plum

    Plum Senior Member

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    Hi Justy

    I'm really sorry to hear yr having such a difficult time with this new med. ME makes it so hard to try things.

    You mentioned being hyperpigmented when starting the thyroid meds - I think adrenal issues cause this.

    Also, is armour completely natural? I think Nutri do a dessicated thyroid glandular which is completely natural. Sorry my knowledge of these things isn't great right now but I did want to mention them to you.

    I hope you start feeling better soon :)
    justy likes this.
  11. bertiedog

    bertiedog Senior Member

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    Hi Justy

    You probably already know that if your adrenals aren't producing enough cortisol then you won't be able to use the dessicated thyroid and it can make you feel worse and toxic. If you continue to feel worse it would probably make sense to stop it and re-evaluate. I have to take a full replacement dose of steroid to be able to tolerate dessicated thyroid, I am ok with 2 grains daily plus 25 mcg thyroxine but without the Prednisolone (6mg) I couldn't take any Nature Thyroid because of severe side effects. I didn't do well on hydrocortisone but Prednisolone suits me fine.

    Pam
    justy likes this.
  12. justy

    justy Senior Member

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    Thanks for the replies.
    The hyperpigmentation started last summer. long before the thyroid meds.
    I have a Genova Adrenal 24 hr saliva test ready for doing on Monday - so can see what the results are in about a week after that - in time for seeing Dr S again in August. I suspect it is my adrenals causing this problem - have been on a thyroid forum and its something discussed there a lot.

    I am prepared to take a low dose steroid to see how that goes (if needed) how are you now bertiedog since you have been on the NDT and the prednisolone?
  13. sianrecovery

    sianrecovery Senior Member

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    Hi Justy

    I think its worth continuing to look at the endocrine stuff - I spent years working on my adrenals before I did thyroid meds. I chose (my choice, not docs) to do T3. It was a bumpy ride, but so far, its worked out well. I chose T3 because 1. I was impatient 2. I was worried about functional blocks in terms of T4/T3 conversion 3) I read Paul Robinson's book on circardian dosing and thought it was worth a try. I did ultra low dose cortisone dose via a cream for a year before I went on thyroid meds, but felt I could discontinue it a few months prior to starting. You might want to look through the resource files on the thyroidpatientadvocacy website if you haven't already found that. I've been on T3 for a year now. I don't think its a cure - I don't think it fixes the underlying problem, for me, anyway, but it has given me the energy to function and live.
    SanDiego#1 and justy like this.
  14. brenda

    brenda Senior Member

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    I am surprised that DR S did not understand that steroids are required before thyroid treatment especially as it had failed before. Those with Lyme react very badly to steroids.

    I have settled my adrenals down through diet alone.
    Plum likes this.
  15. Plum

    Plum Senior Member

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    Hi Brenda

    I have major adrenal issues and have worked through all manner of things to help them. Diet has been my biggest saviour so far. I would be really interested to know what diet changes you've found have helped yr adrenals?

    Thanks
    brenda likes this.
  16. brenda

    brenda Senior Member

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    I believe the biggest strain on the adrenals is through our food. I eat 60% whole grains, not milled but soaked and chewed well. Rice, millet, quinoa with beans to make a complete protein which seems to be enough. No nightshade veggies. Some milled grain like oatmeal for breakfast (gluten free) or crackers. Meat once or twice a week. NOTHING ELSE but an occasional piece of melon or apple. Water or dandelion tea. My adrenals are healing fast.
    Plum likes this.
  17. Plum

    Plum Senior Member

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    That's amazing Brenda. Thanks. I do mainly Paleo. Grains have always been a problem for me even when soaked and cooked in broth. Do you get your adrenals tested regularly? I've only had 1 test done with Genova.
    brenda likes this.
  18. justy

    justy Senior Member

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    Plum - was it the saliva test you had done with Genova? what were your results like?

    Normally i get my tests through Dr M - but she's cahrging an extra £80 to interpret. I figure i can ask on forums and ask Dr S for his interpretation of the results (plus if they are out ofnrange Genova will include a short commentary)

    I have also learnt from thyroid forums how important iron and vit D are. I have been taking iron tablets for very low Ferittin and iron deficiency anemia for a coupke of years. Dr S stressed the importance of getting my iron and iron stores well up - he said he would write to my GP to ask why this hadn't been taken more seriously so far.

    I have heard from many others with adrenal issues that it is very hard to heal through diet and supplements alone - i have done some herbs with a herbalist and my anxiety and startle reflex and ability to handle stress is much improved - but not cured. At one point my startle reflex was so acute that hearing my husband breathing at night would make me constantly startle - it was awful!

    It seems i am on another new journey with all this now. I am hoping i am one of the many who are curedn by Dr S by treating thyroid - but i realise that may bnot happen for me.

    Take care all,
    Justy x
    Plum likes this.
  19. Plum

    Plum Senior Member

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    Test was with Genova. Results were all bad. All 4 cortisols were very low. Both DHEA were low too. How are you ordering yours as I though you needed a referral to get them?

    They are self explanatory so I think an £80 explanation fee is a bit high but Dr. M does such great work for everyone I feel bad saying that!

    I have found Perrin Therapy is helping with my overall stress so should be calming my adrenals a bit or at least the stress put on them. Anxiety can be really awful and glad yours is better. xx
    SanDiego#1 likes this.
  20. brenda

    brenda Senior Member

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    Plum they have not been tested for over five years and they low low then but got much worse l think. I had to stop taking Naturthroid and T3 after that. Until this diet l was waking with panic symptoms but l feel that they are becoming much stronger, l feel my heart is stronger as well. I am not going to bother with tests. I know that healing is taking place with the diet. I think that maybe the problems people have with grains might be due to the rest of their diet like too much fruit for example on top of grains.
    Plum likes this.

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