Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Pituitary gland

Discussion in 'Other Health News and Research' started by wastwater, May 6, 2015.

  1. wastwater

    wastwater Senior Member

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    Are these Hormones effected in ME/cfs mostly they arnt routinely measured apart from thyroid stimulating hormone TSH. GH growth hormone TSH thyroid stimulating hormone PRL prolactin ACHT adrenocorticotropic FSH Follicle stimulating(gonad?) LH luteinizing,Id like to get them tested to see where im at.
     
  2. JaimeS

    JaimeS Senior Member

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    Are they routinely measured? Definitely not. You have to ask your physician to measure them.

    -J
     
  3. wastwater

    wastwater Senior Member

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    The only one you can get tested for with a GP on the NHS in the UK is TSH,and I would need a referral to an endocrinologist for the others and a good reason.Ive seen most of these hormones mentioned on the forums.
     
  4. JaimeS

    JaimeS Senior Member

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    Then, is your question does CFS affect pituitary hormones?

    CFS is a pretty heterogeneous classification that is made up of many different illnesses. That means I have no answer for you. :( In many cases, pituitary hormone dysfunction and CFS or ME co-exist, but I would say if low GH or ACTH is your primary issue, we'd say you have Adult Growth Hormone Deficiency or Adrenal Insufficiency, not ME.

    It is very common to have both AI or GHD and ME, though.

    -J
     
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  5. wastwater

    wastwater Senior Member

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    Ive joined the pituitary foundation as hypopituitarism is something worth looking at for myself.
     
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  6. wastwater

    wastwater Senior Member

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    I hope I've got to the root of my problem,my genetic condition can effect the formation of the pituatry gland,I wonder if Ebv may of further weakened my pituatry. The thing is my Thyroid stimulating hormone function is fine,so I'm finding it hard to get an endocrine referral,I am treated for hypothyroidism NOS, not related to antibodies.
     
  7. Tammy

    Tammy Senior Member

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    I think its very plausible that Ebv weakened the pituitary........it takes a major toll on the CNS and can cause pituitary and hypothalamus dysfunction.
     
  8. anciendaze

    anciendaze Senior Member

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    The entire HPA (hypothalamus, pituitary, adrenal) axis is dysregulated in this disease. Most of the time this does not meet typical clinical standards for adrenal insufficiency. Adrenal hormones are most likely available, but are not being released appropriately.

    Educating the medical profession about any kind of complex dynamics is a major undertaking. I've recently commented on "expert" opinions about hemodynamics, which yields actual numbers far more easily than endocrinology. Cardiologists typically blame variation they don't want to see on instrumental error or emotional disturbance. We've seen them dismiss extreme cases of POTS, and some deny that there is such a thing as neurally-mediated hypotension. Some doctors will tell you that the term is just a polite way of telling patients their symptoms are caused by emotional problems.

    I've written a lengthy blog post on the tendency to ignore dynamics and ascribe all variation to chance. This is not because mathematical tools to deal with dynamics are lacking. Doctors prefer simplistic criteria based on a very few numbers which are supposed to apply to the entire population. This provoked another blog post about thinking outside the box.

    Part of the problem comes from economic reality. Under current standards you can make good money by charging people for personalized advice from a highly-trained expert, while expending a minimum of time and effort thinking about individual patients. Another problem is hubris. We all have a tendency to value expertise based on the effort that went into it, irrespective of the value coming out. Honesty about the current state of the art in medicine should provoke humility. Honest doctors can expect to be torn apart by malpractice attorneys.
     
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  9. wastwater

    wastwater Senior Member

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    I'm looking at neurocristopathy as axenfeld riegers fits under this
     
  10. anciendaze

    anciendaze Senior Member

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    Yet another example of the gap between current medical practice and biological reality. In engineering situations I have long believed that people underestimate the complexity of fluid flow, even when talking about water or hydraulic fluid. An exposure to problems in liquid oxygen tanking on the Space Shuttle, convinced me this is true even of highly-trained professionals. (When something went wrong it took about 10 minutes for experts on consoles to decide that the numbers they were seeing meant the problem was real. Meanwhile, flow continued at something like 1,300 gpm.) Most of the systems I studied could be said to have quasi-steady flow, in normal operation, which is not true of most biological examples.

    Now, I've learned about still another gap between medical research and practice. Biological circulatory systems are highly ramified: they branch, then branch again, until they reach some minimum size vessels. Flow in such networks is considerably different from the plumbing in your bathroom. Here's a collection of papers from a research symposium which I am not planning to buy or read. The price is only one drawback. I have limitations.

    How much difference does this make in medicine? It applies to highly vascularized organs like the brain, eyes, lungs, liver, adrenal glands and kidneys, to say nothing of the gut.

    Oh, yes, the pituitary and hypothalamus are other examples of highly vascularized organs where defects in microcirculation could cause serious damage with long-term consequences.
     
    Last edited: Jul 22, 2015
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  11. wastwater

    wastwater Senior Member

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    Im wondering if it might be worth me looking at multiple endocrine neoplasia (MEN)
     
  12. halcyon

    halcyon Senior Member

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  13. anciendaze

    anciendaze Senior Member

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    @halcyon

    I don't know, though the sheer surface area of the many tiny blood vessels involved could present more entry points. What I've been thinking was more along the lines of invasion by cytotoxic T-cells triggered to invade inflamed tissue by a general immune response -- which may not have any connection with actual foreign pathogens in the inflamed tissue. Another possibility is common infectious agents people normally tolerate, like a number of viral infections, say CMV, or even typically harmless spirochetes like treponema denticola. Both of these have turned up inside brains of those who die with dementia or brain cancer.

    All of these problems sound to me like a consequence of misdirected immune response, but we still don't know what initiates the process. The idea that this is a result of some pathogen manipulating immune response to protect itself is still high on my list of suspects, but I don't necessarily think this will be found where the damage takes place. If a pathogen is successful in misdirecting response the damage will show up elsewhere.

    One other aspect that keeps turning up is disturbance of normal hemodynamics in dysautonomia. Proper chemical communication between hypothalamus and pituitary depends on that blood flow to transport hormones. Problems that affect tiny blood vessels, more than large ones, would have more effect on these highly-vascularized endocrine organs.
     
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  14. wastwater

    wastwater Senior Member

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    I looked at the wiki page on neurocristopathy and saw some ME/cfs researchers wondering if MS might be a neurocristopathy,I wonder how that went and could it be of any worth thinking of neurocristopathy for ME
     
  15. ukxmrv

    ukxmrv Senior Member

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    http://www.investinme.org/mestory0041.htm

    "In Spring 2008, I eventually had dynamic testing (the glucagon test) and was diagnosed with inflammation of the pituitary gland. This had caused severe deficiency of the Adult Growth Hormone and hypocortisolaemia, which is secondary hypoadrenalism caused by a lack of ACTH from the pituitary.

    In August 2008, I at last started getting the appropriate medication from the NHS. The consultant has said that my body has been deprived of the hormones for so long it could take years to restore full health again.

    The medical profession saying that no further testing is necessary, if you have had a normal result from a short synacthen test means that pituitary disease is ignored."
     
  16. wastwater

    wastwater Senior Member

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    Thanks for sharing youre story,im fairly hopeful for myself as one of the common genes in Axenfeld Riegers is heavily involved in Pituitary formation. PITX2 (pituitary homeobox 2)
    I'm looking into leukodystrophy too.
     
    Last edited: Aug 9, 2015
  17. wastwater

    wastwater Senior Member

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    Everything is fine,I don't show signs of pituitary failure,but might need counselling for depression
     
  18. wastwater

    wastwater Senior Member

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    If I have a genetic error at COL4A1 maybe this has caused my problems.Mutations in Col4a1 affect endothelial cell function and NO/cGMP
    Could ME be an acquired or inherited fault in endothelial cell function
     
    Last edited: Aug 17, 2015

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