Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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‘Mother of a suicide:fighting for the truth’ book by Joanna Lane

Discussion in 'Hormones' started by mermaid, Nov 6, 2016.

  1. mermaid

    mermaid Senior Member

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    I just wanted to commend this book here that I have recently read.
    It may even ring some bells for someone wrongly diagnosed with ME/CFS

    I did a search on PR to see if anyone else had highlighted PTHP, and I see that there is this thread following an article in the Daily Mail. Joanna was actually the person who wrote the Daily Mail article (she is not a DM journalist). http://forums.phoenixrising.me/inde...behind-30-000-cases-of-chronic-fatigue.30339/

    The true story starts in the UK with the suicide of Joanna’s son and how she, with the months following, tried to understand and make sense of it. She found out from his medical records and other personal information, that he must have suffered from a medical condition that was never diagnosed – Post-traumatic Hypopituitarism, known as PTHP.

    Joanna discovered although there is a relatively high risk of pituitary damage after brain injury, the symptoms of which can happen months or even years after the event, that few people are warned of the risks at the time. In the years following therefore if they then get seemingly unrelated illness, they may not tie up the things together, and it’s likely that neither will the medical experts that they see. Unfortunately also the standard testing for pituitary issues is lacking and does not pick up many cases, and the other better testing is not always done, so the patient goes away still undiagnosed.

    Some of these people will be diagnosed with ME/CFS and fobbed off. Some perhaps diagnosed simply with depression as that is a factor too with PTHP. The story is familiar to us on here, but maybe not this aspect of it.

    Joanna has spent years since Christopher’s death trying to highlight this gap, and ask for specialists in the field to simply point out the risks when the person gets brain injury. You would think this would be straightforward but she has been blocked at every turn, sometimes by the charities that represent the patients and sometimes by the Government agencies who are supposed to help, such as NICE. As well as a very human and moving story which is a fitting tribute to Christopher’s memory, to ensure that no one else should suffer as he did, it is also a record of what she has done over the 8 years since he died, (not entirely successfully due to the blocks that have been set up by persons unknown), to highlight a condition that can be helped, if known about.

    Having read about ME advocates on this forum, Joanna seems to have achieved an amazing amount single handed. She is still trying to get the information out there. If you have had a brain injury in childhood or later in life, you may want to read this book or explore the subject of PTHP as it could be the key to understanding your own problems.

    Joanna lives in the UK where she experienced extraordinary resistance and reluctance to inform and diagnose properly. I don’t know if the same is true in the U.S. or other countries. Does anyone know?
     
    Last edited: Nov 6, 2016
    Abha, Jan, paolo and 6 others like this.
  2. TiredSam

    TiredSam The wise nematode hibernates

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    I had an MRT scan which revealed a 7mm cyst in my pituitary gland. According to my endocrinologist everything is in order, and two following scans at 6 month intervals have shown that it is not growing or changing. The view is that I've probably had it for years and it's not causing any harm. I suppose I'd better look into PTHP now.
     
    Invisible Woman likes this.
  3. Paralee

    Paralee Senior Member

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    @TiredSam and @mermaid , is there any way a cyst in the pituitary could be a benign deal? By benign I don't mean cancer, I mean something not worth considering. I've never heard of a cyst in the pituitary that wouldn't be symptomatic, is that possible?
     
  4. TiredSam

    TiredSam The wise nematode hibernates

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    That's the way mine is being described, and I've no reason to doubt it. I'll be having another MRT in a few weeks just to check, but it hasn't changed since discovered and all my values from the endocrinologist were ok. Apparently it's not uncommon.
     
  5. mermaid

    mermaid Senior Member

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    @Paralee I am afraid I have no expertise in this matter. I did google it and it sounds as if there are various kinds of cysts and some they don't necessarily operate on if benign, but you know this I am sure.

    I guess the problem can be convincing the medical person that the symptoms you get are coming from the cyst? Perhaps it depends on what they are? I did read one account of someone who was having problems with their vision and getting headaches, and the advice was that they should have an annual MRI at least.
     
  6. Paralee

    Paralee Senior Member

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    @mermaid and TiredSam, thank you. Pituitary problems can lead to Cushing's, I've never heard of one just sitting there doing nothing. Thanks.
     

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