YAY I seem to have my life back :-)

I have not posted for a while because instead of being exhausted I've been busy :-).

Short version - ongoing problems since childhood in autoimmune category.

Catastrophic post natal reaction in 20's due to iron infusion

Kidney removal in late 30's due to obstruction, ( probable adrenal damage incurred due to surgery and severe post op infection!)

Adrenal collapse in late 40's post bereavement.

Hypothyroidism diagnosed at 50,

Very very ill on Levo so stopped at 52 and went to Dr BDP.

Trials of self funded lio with OK results but gall bladder flare up.

Refused gall bladder surgery and played with diet (although it was already Low Fat etc)

returned to NHS and went through combo Levo Lio trails and convinced them with accurate records I need lio only.

Reaction to NHS lio back again to NHS saying I had re started self funded Lio.

Agreed named patient basis french cynomel from NHS.

RESULT MUCH BETTER but NHS still diagnosing ME/CFS/ Depression ( wait till I bounce in to see them)


Visit to kinesiologist identifying beneficial supplements:

Magnesium, Krill Oil, Nutrigest continuing, Nutri Adrenal continuing, Spatone and Floradix replacing NHS Ferrous Gluconate, Vit C, Vit B complex< Elemental iron not good for me even though I have ongoing low ferritin. Have stopped Vit D to see how I do with my rolled up sleeves in the summer months. Apple Cider Vinegar.

DIET: Gluten free - son diagnosed coeliac 2 months ago, so although he is adult and is now living away from home we decided to do the Gfree journey together.

Very low dairy, but I use butter when fat needed for recipe rather than some dubious spread processed who knows how.

LIFE STYLE: am reading Donna Eden Energy Medicine lots of useful tips. ( Also see Izabella Wentz online and book)

Over the last two weeks - I have cycled miles, including a day trip of over 25 miles, holidayed camping by myself, driven over 200 miles, cut my cynomel by a third, been on granny support mission to 2 year old whilst Mummmy works, cooked , shopped and feel like me.

Hip pain woke me again so magnesium oil rubbed in and now for some pilates to ease it - shoulder and back pain gone!

Family are all amazed - everything crossed but what shall I do today?

Good luck to all those battling this weekend hope this might help somone else too.

Happy Whitsun Weekend


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10 Replies

  • What good news, Sarah. Long May it last :-)

  • So lovely to hear your news Sarah, but also very jealous. You really do seem to have turned your life round. I think the only way to go is private for me, but money proves a bit of a stumbling block. Hope you continue to do well. Janet.

  • Hi j-bee - It has been a long journey with lots of recording and a change of GP and endo. However I think collecting signs symptoms and produsing graphs of my progress has really helped to get my case heard - I didn't go private apart from Dr BDP but I did decide to fund my own meds to prove a point. They may still think it's all in my head BUT I have the script I need at a cost 10 x less the NHS script for them!

  • I wonder whether the key is the coeliac bit and don't know whether that explains my intolerance to Levo and NHS Lio ?? I've not been tested for coeliac but 1 in 10 chance as my son is positive for it. Forgot to add in Fos a dophilus for gut bacteria. I hope to reduce supplements as I improve.

  • What a wonderful result! That is fantastic! Very pleased to hear you are doing so well. Thanks for telling us about it :)

    Carolyn x

  • If your symptoms were all in your head do they think your recovery is too, or are they taking credit for it?

    You've worked hard Sarah, but its paid off and very encouraging that you've pretty much enabled your own recovery without going private. Hopefully this will encourage others and give them hope for their own recovery.

  • Well done Sarah, another good news post!

  • I do like happy stories :) Gives hope to everyone else.

  • happy dance, sarah xx

  • Fantastic - so good to hear you doing well! Congratulations!!

    And so heartening to know that it is possible for fitness to be regained for all of us!

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