Have you tried everything and still feel unwell?

There have been lots of posts and questions on here lately from people wondering what to do next. Is there anything left that you can try to make you feel better? Maybe your blood tests don’t accurately reflect how you feel.

You may think you’ve tried everything – you’ve tried all the thyroid replacement options, you’ve tried adrenal support, you’ve tried vitamins/minerals, you’ve tried various diets (gluten free, dairy free, low carb., etc. etc), avoidance of all foods and substances to which you are supposedly “allergic”, but you’re reading this now because none of this has worked, or has been minimally successful. We spent over 20 years seeking out treatments and trying all of the above in attempts to make my daughter better, yet slowly she was becoming more and more ill. A particularly bad year for her was when on the recommendation of one doctor she followed a rigid non-dairy, gluten free diet and had to avoid countless other foods which meant she spent 18 months eating practically nothing and feeling constantly hungry, and STILL putting on weight. Now, at last we know why that was all a complete waste of time and effort, we have discovered why her entire endocrine system was failing, and why her thyroid problem was a symptom of her illness, not the main illness.

We had devoured as many thyroid books as we could lay our hands on – I have a shelf full of them. All of them described my daughter’s symptoms and signs, and we set about following the guidance in them to make her better. We studied countless research papers, we went to seven different thyroid specialists, but all with little success.

Then we had a book recommended to us called “On Hope and Healing” by Dr. Neil Nathan. This book described exactly what had been going on in my daughter’s life and that of my late husband. It set us on a new road of discovery, outside the confines of what we had learnt about healing thyroid problems. That book is now out of print, but Dr. Nathan has a similar updated book called “Healing Is Possible: New Hope for Chronic Fatigue, Fibromyalgia, Persistent Pain, and Other Chronic Illnesses”. The foreword for both books is written by one of Thyroid UK’s advisors, Jacob Teitelbaum.

As a result of this book and further research we learned that my daughter was very, very seriously ill and we can thank Dr. John Lowe and T3 for keeping her compromised metabolism running for the last 11 eleven years. After countless tests this year we learned that she has a chronic stealth virus (HHV6) which she has had since she was a baby 33 years ago, Lyme disease and its accompanying co-infections, but most seriously genetic and life threatening Toxic Mould Disease. These are the culprits that have attacked her immune system and endocrine system over her entire life.

So I am here to tell you that you must NEVER give up looking. There ARE reasons why you are ill and you CAN find them. Sometimes you have to think outside the box. Your story may be similar to my daughter’s or there may be other reasons for your illness. She is now undergoing long term and sometimes very unpleasant treatment as years of toxins are gradually removed from her body, but we already see glimpses of the person she used to be. She is continuing with T3 but we are hopeful that maybe in the future that can be reduced or stopped. There are further tests and treatments ahead of her as her doctor refines her medication to suit her individual needs. We are also in touch with others undergoing similar treatment which you will know from this site provides great help and support. We know there is still a long way to go – she has after all been ill for many, many years. So don’t assume the answer for you is going to be easy and straightforward, don’t think it will be the same as anyone else’s, but DO keep looking.

I’m happy to share what information I have if you PM me for more details.

Jane x

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  • Thank you for posting this Jane. In case anyone is interested in the book Jane mentions, here's the TUK affiliate Amazon link:

    'Healing Is Possible: New Hope for Chronic Fatigue, Fibromyalgia, Persistent Pain, and Other Chronic Illnesses'

    amzn.to/18I8yxy

    (The affiliate link means that Thyroid UK will be credited with a small commission whenever anyone purchases the book by using this link)

  • Jane, so good to hear that things are progressing in a positive direction. Maybe one of these days you and Caroline will write about the journey so others can gain from your experience and knowledge. PR

  • That's great Information Jane. I'm going to head over to Amazon and have a look at the book you mentioned..

  • So pleased for both you and your daughter Jane that there is, at last, light at the end of her very long tunnel. You must be so relieved to be finally seeing your daughter blossom again.

    This kind of post gives hope to us all and hits home the message that you must take control of your own health and not rely on our NHS to find the answers.

    Wishing you both a very happy christmas and further improvement in her health in 2014.

    Well done Jane - a mother will move heaven and earth wont they for their children.

    Moggie x

  • I'm really pleased that your daughter is improving and I really hope she continues to do so. I myself have not been well for a long time and i know how difficult it is but I've finally realised that there are many avenues to explore which I'm started to look into. I hope you don't mind me asking which route you went down to identify your daughter's diagnoses? I'm currently seeing Dr P who has been a great help but I still feel I've a way to go, which maybe just down to me not being on my optimal dose/combination. However, I'm considering my next step and was wondering which work area or who to approach.x

  • That sounds like me too, Pooh10.

  • Hi Janeb - could you tell me how she was diagnosed with Lyme and HHV6? You're welcome to PM me if you prefer not to say in public. Thanks.

  • Hi Janeb - Please feel free to PM me aswell if you prefer. Thanks x

  • Thank you to all those who have PM'd me. I apologise if I haven't got back to you all. There seems to be something seriously wrong with HU!! PM me again if you haven't heard from me. Jane x

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