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CFS patients should be tested for Pituitary function.

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Zensational, Jun 10, 2012.

  1. Zensational

    Zensational

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    Having had CFS/ME for 28 years, I have been down a lot of blind alleys, medically that is. I am now of the opinion that any patient who presents to a doctor with the typical CFS symptoms should have a pituitary function test for Growth Hormone levels. I say this because when I first became ill in 1984, in addition to having the low grade fevers and fatigue, swollen glands, etc, I was having gait problems causing me to fall. This prompted me to see a neurologist who did an MRI and found that my pituitary was enlarged. He dismissed it, guess he didn't know what to do about that and CFS/ME was practically unknown at the time. More recently I started having migraines and that prompted me to see a neurologist who specializes in headaches. He ordered another MRI "with contrast" and discovered "empty sella".
    So the conclusion I am drawing is that the virus initially caused my pituitary to become enlarged and it ruptured the membrane causing the fluid to come into the sella, thus shrinking the pituitary.
    Tomorrow I have an appointment with the endocrinologist to see the results of my bloodwork. I am praying that they prescribe the Growth Hormone in addition to the other hormones I am missing.
    I have read that Growth Hormone is one thing that restores stage 4 sleep which I am getting very little of. That is confirmed by a recent sleep study. Zero stage 4 sleep.
    I am uncertain as to how the hypothalamus plays into all of this. I will find out more tomorrow.
    In the meantime I am trying to hang on to sanity. Quite a trick with no stage 4 sleep.
    justy, Wayne and taniaaust1 like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    interesting, please keep us updated. Cheers!!!
  3. Jenny

    Jenny Senior Member

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  4. Zensational

    Zensational

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    Thanks, that is very interesting. I don't think it takes a huge blow to the head to sustain an injury. I understand that the hypothalamus is very sensitive. What else is interesting is that I had carbon monoxide poisioning and was unconscious for a very short time and was revived by a police officer that lived near me.
    I have tested positive for EBV, CMV and Parvo so I know that this is the major problem and have all the symptoms.
    I will repost the results of my endocrinologist visit today.
  5. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I think most people with no deep sleep are likley low in GH.

    GH treatment is so expensive, like $30,000 a year. Insurance comapnies usually will only cover if you are shown to have a primary GH deficiency....think you need some sort of stimulation test. Low IGF-1 levels usually not enough for them to pay.
  6. November Girl

    November Girl Senior Member

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    I look forward to hearing the results of your blood tests. Many of the drug companies will provide free or very low cost drugs to low to moderate income people - and an income doesn't have to be very low to make GH prohibitively expensive.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    there are certain peptides that are injected that can stimulate GH and are alot cheaper then GH, i dont have any experience with this but have read it on bodybuilding forums, many of them find it helps with healing injuries and reducing body fat, not something they use for huge muscles. I think something like this could help us improve our recovery etc etc
    http://www.peptides-direct.com/pages.php?pageid=5 I would be interested to hear if anyone has tried this type of treatment.

    cheers!!!
  8. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I took some supplement years ago that was recommended by a doctor to supposedly help promote GH but I have NO idea what it was....that was about 6 years ago.

    The only thing I'd warn against is a lot of these Growth Hormone supplements seem to contain the amino acid arginine...and I have always read that arginine is bad for people with herpes viruses as it can make them proliferate

    . I think Lysine may counteract Arginine and that is why some people swear by Lysine for Cold sores...dont know if it works or not, tried high doses for EBV, didnt do a thing.

    You can googles Arginine and Herpes, I can't get a link to paste on here

    ETA: There was a lady I remember years ago that got her Growth Hormone provided for Free based on her income....but I am pretty sure it was because she had a diganosed adult growth hormone deficiency based on a flunked GH Stimulation test.

    I think that low IGF-1 levels can happen for a lot of reasons, and they do naturally decline with age also

    Google "Growth Hormone Stimulation Test"

    It would be interesting to see if taking even a small amount of GH would help improve sleep, instead of searching endlessly for a magical medication that will produce deep sleep, when I can't seem to tolerate any of them ((super angry/annoyed face)) but the cost is so prohibitive, and most doctors don't just prescribe GH freely
  9. jeffrez

    jeffrez Senior Member

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    Worse comes to worse, you can get HGH from overseas and do it yourself. I got some very high quality Humatrope and Saizen that way at a reasonable cost. It usually comes with saline, or that is easy enough to get also, and needles are OTC now. You just have to be careful to know who you're dealing with so you don't get ripped off. There was a yahoo group with a lot of info and contacts on the subject, but I don't recall the name. If you search around for "growth hormone," "HGH" "rHGH," etc. you should be able to find it. Hopefully you won't have to go to those extremes, though. GL!
  10. Zensational

    Zensational

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    Okay the Endo is typical medical establishment and since I am 65 would not prescribe even estogen, progesterone, testosterone, muchless hgh even though my levels of Lutenizing Hormone and Follicle stimulating hormone were quite below the normal range and my Growth Hormone was very low normal. Amazing! I guess they think that we are no longer viable after 65.
    I am currently looking elsewhere. This is one formula I am looking at to repair the pituitary. It is a homeopathic from Germany and we are looking into some other spray formulas as well.





    ACETYLCHOLINE CHLORIDE 6X,12X,30X,200X,12C,30C,60C,200C - A major excitatory neurotransmitter used for control of sensory input and muscular outpour signals, memory, mental focus and sexual activity. A neurotransmitter of major significance needed for smooth flow of nerve impulses. A chemical mediator released by cells and known to produce allergic manifestations along with histamine.
    DOPAMINE 6X, 12X, 30X, 200X, 12C, 30C, 60C, 200C - Dopamine is one of the basic neurotransmitters of the nervous system. It is also found in many foods. It is known to assist three main Dopamine Neurotransmitter systems
    GABA 6X, 12X, 30X, 200X, 12C, 30C, 60C, 200C - GABA is a non-protein that functions as an inhibitory neurotransmitter. It is very important to brain function, acts as a natural sleep-inducing compound and has anti-hypertensive and anti-schizophrenic characteristics.
    OCTOPAMINE 6X,12X,30X,200X,12C,30C,60C,200C - A neuromodulator which acts by modifying the effects of hormones and neurotransmitters to modulate nervous system responses to various stimuli. Its broad distribution in the brain and other parts of the nervous system allows it to act on many neurons.
    SEROTONIN 6X, 12X, 30X, 200X, 12C, 30C, 60C, 200C - A neurotransmitter of major importance in brain chemistry. It is responsible for regulation of appetite, sleep control and when deficiencies occur, some emotional tendencies such as aggression and obsessive compulsive disorders. It is metabolized from the essential amino acid tryptophan, which can be derived from indole through pancreatic degradation and in the small intestine.
    TAURINE 6X, 12X, 30X, 200X, 12C, 30C, 60C, 200C - An inhibitory neurotransmitter which plays a major role in the brain and other electrically excitable tissue. It is involved in the calcium metabolism within the brain which plays a major role in the release of neurotransmitters.
    CEREBRUM SUIS 8X - Brain sarcode needed to direct the balancing of neurotransmitters.
    CYCLIC AMP 8X - A molecule synthesized from ATP by adenylyl cyclase, which is located at the cell membrane and is activated by a range of signaling molecules. It is a second messenger used for intracellular signal transduction, such as transferring the effects of hormones like glucagon and adrenaline which cannot get across the cell membrane. It is also used to regulate the passage of calcium through ion channels. Ion channels are pore-forming proteins that help establish and control the small voltage gradient (the flow of ions) across the plasma membrane of all living cells.
    DIENCEPHALON SUIS 8X - Brain sarcode needed to direct the balancing of neurotransmitters.
    PINEAL GLAND SUIS 8X - Brain sarcode needed to direct the balancing of neurotransmitters.
    THALAMUS OPTICUS SUIS 8X - Brain sarcode needed to direct the balancing of neurotransmitters.​
  11. richvank

    richvank Senior Member

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    Hi, all.

    For what it's worth, the Glutathione Depletion--Methylation Cycle Block hypothesis that I have proposed suggests that both the hypothalamus and the pituitary are depleted in glutathione in ME/CFS. The result of this is that all the peptide hormones that have cysteine residues in their structures that are produced by these organs can be expected to be deficient. Human growth hormone is one of them. Some others are antidiuretic hormone (vasopressin), oxytocin, somatostatin, luteinizing hormone, follicle stimulating hormone, thyroid stiumulating hormone, and ACTH.
    I have suggested that many of the endocrine abnormalities in ME/CFS therefore stem from this fundamental problem.
    According to the GD-MCB hypothesis, lifting the partial methylation cycle block. which usually allows glutathione to come back up to normal, is the key to correcting all these problems.

    Best regards,

    Rich
    November Girl likes this.
  12. Zensational

    Zensational

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    Thanks, I am looking that up now.
  13. jeffrez

    jeffrez Senior Member

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    FWIW, most of those GH "secretagogues," esp imho homeopathic, are basically just scams. Arginine will increase GH, but like MoonisBlue said, at the expense of stimulating herpes viruses. Might also be undesirable to crank up NO that way, which possibly could increase peroxynitrite radicals. I'm not sure on that point & have always been curious, but when I mentioned arginine to my chiro he said that's exactly the wrong kind of NO I want to raise. Maybe RVK knows more about that.

    The GD-MCB hypothesis seems like the most parsimonious explanation for so many things, but like with everything else in this disorder, YMMV. Wish we could start seeing stronger results with that, or more refinement of the protocol to proven successful outcomes - as simple as it already is. But maybe it's not possible to simplify it any more, and we're just missing a component somewhere that is preventing full effect from it.

    Regarding GH, though, the best bet & gold standard is going to be genuine rHGH. Anything else other than aminos or known stimulators like exercise, etc. is going to be a gamble, and you might just be throwing your money away. That's only my personal POV, though.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Look into low dose clomid which can be easily obtained from online pharmacies, this med can stimulate certain parts of the HPA axis and increase testosterone this way. Low doses like 12.5 every second day is enough for many to increase their testosterone levels to the upper 1/3 of the reference range. google clomid and increase testosterone for men. Also pregnenolone can help improve testosterone as well as other hormones and neurotransmitters, worth looking into. Many bodybuilding forums have an antiaging section that deal alot with hormone replacement therapy involving GH, testosterone, clomid, pregnenolone etc u can find some good info or maybe find a good doc, many find endo's no good for these issues.

    cheers!!!
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The peptide hormones seem to be a different kettle of fish compared to amino's for GH stimulation, plus they are injected so avoid being broken down by the digestive system. Some sleep meds are know to increase deep sleep and gh release, xyrem and baclofen have studies to back this up. Baclofen definately helps improve my sleep quality when used with a good sleep med.

    cheers!!!
    jeffrez likes this.
  16. jeffrez

    jeffrez Senior Member

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    Yes, that's true - meds like clonidine can increase GH, too. I can't really comment on the peptides b/c I've never researched them. If they have to be injected, though, I wonder what the advantage is over just injecting HGH. Are the peptides easier to obtain?
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    From what i have read the peptides are alot cheaper and i dont think u need a script, but i dont have any personal experience with it either but its something that looks quite good on paper.

    cheers!!!
  18. Lej123

    Lej123

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    Hi,
    I am new here. I am having horrible problems- like everyone else here. I cant find a doctor to help me. Does a ADH level .8 (had this tested 2 times) could that be central DI? I pee 20-30 times a day and I am always thristy. My pee is always clear. I drink over 120 oz a day but i am still thristy! I have gained 25 lbs in 18 months- does anyone with DI ever gain weight? My Endo DXed me with Idiopathic orthostatic edema and gives me Adderall. Now my pulse is higher , have more energy and my BP is 110/75 now (used to be 90/55-60s pulse 36 when sleeping high of 56 before adderall). now my pulse jumps over 35 pts when i stand. He wont listen about DI b/c i have gained weight. I think the adderall is screwing me up- dehydrating me more! but i need the energy...any ideas? Help???? what type od DR do you go to?
  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Not sure where you are, but the Co-cure website has Drs listed around the world, a little outdated, but my doc is on it, and he has helped me. Hope this helps!

    GG

    http://www.co-cure.org/Good-Doc.htm

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