I Need Help With An Adrenal Tumor

Discussion in 'Messtafarian' started by messtafarian, Oct 26, 2015.

  1. messtafarian

    messtafarian Member

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    last Sunday I went to the er in the most excruciating pain imaginable. It only took them about three hours to have me admitted and scheduled for emergency gallbladder surgery. They waited a day and kept me fasting, on a drip and dilaudid, while they did something called an MRCP -- don't know what it stands for but it is an indepth mri of my abdomen which told them there was no doubt at all the thing had to come out. I was really too sick to care what they did or said, but the next day they whisked me into the theatre and did a laparascopic removal. It was really bad, containing two jet black stones both about 5 cm in diameter and the gallbladder itself had swelled to 15 cm, blackening and hemorrhagic.

    I haven't had a brilliant recovery. The surgeon said he was about to open me up because the thing was huge but in the end he wrested it out of my bellybutton leaving me in a world of pain.

    But afterwards the report from the MRCP came over on my hospital account. On the report it noted that my gallbladder was massive and my bile duct was dilated, my liver was swollen but fairly normal except for some fatty infiltration. Lo and behold I also have something called a congenital bochdalek hernia. But also....there was a 2 cm adenoma on my right adrenal gland.

    Now...gallbladder aside, I know this is the source of everything that's been bothering me for the past couple years. The hot flashes, the GERD, the shaking, limb/girdle weakness, hypokalemia, sudden very high blood pressure, intractable iron deficiency, all of it. I absolutely know it but since that day, a week ago, I have not been contacted about that tumor and I know its going to be a big deal to convince them to take it out. The reason I know that is because the growth is considered "small" and the only oddity on my labs is an overall high cortisol count of 85 U -- not high enough yet to be considered "Cushing's." It's going to be a big problem and in the meantime,I have to do everything I can to stop the cortisol from eating me.

    what I have on hand is cypro, inderal, lysine, most vitamins, a multiple. My digestion is shot and I have to be careful with the fat-solubles because only a little of them will go into me and be delivered. I've just come off of MASSIVE IV antiobiotics and have no gut flora ( but no c-diff either as far as I know). I'm barely eating since nothing is really going down -- that could go on for a couple months. My butter experiment is probably out of the question from now on. My liver is bruised and showing signs of mild damage from infection and the operation. Assay of Amylase was OK but Lipase was pretty low.

    So I've got bromocriptine, periactin and clonidine on order. I don't think it's a classic "pheo" since the bloodwork they did a couple months ago only showed high dopamine on the catecholamine panel and normal metanephrines. To me, given my symptoms, it's an active cortisol-producing adenoma but I know it's going to take a year or more to get any oncologist to get it out of me.

    I need all cortisol/ACTH reducing strategies going to work now so I don't end up dead on the way to surgery for this thing. All suggestions accepted.
     
  2. Blossom

    Blossom Moderator

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    I'm sorry to hear you're going through such a rough time mess. Have you perhaps talked to your doc about a 24 hour urinary cortisol test or a dexamethasone suppression test?
     
  3. tara

    tara Member

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    Ouch. Sorry it got to that, but glad you got to some care for that gallbladder.
    Have you had any medical opinion that the adrenoma could be the cause of all your other extreme symptoms the last few months? Have they said anything about what they think it is doing in your system?
    Take care.
     
  4. burtlancast

    burtlancast Member

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    This might be a curse, or it might be a blessing.

    I don't know much about the malignity of adrenal tumors, but i know cancer surgery can spread any cancer farther away in the body.

    You have the occasion to kill the tumor with natural anti cancer therapies.
    There's Gerson, of course, but there's too Laetrile (look into the Jason Valle story), oleander, the Beljanski herb extracts, the Gaston Naessens camphor shots.

    There's too the Rick Simpson cannabis oil.

    All these are legit and have a proven track record.
     
  5. OP
    messtafarian

    messtafarian Member

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    Hi, no, no one has gotten back to me. I did have a 24 hour cortisol test and cortisol was high as well as dopamine but the other catechiolamines were normal as well as the metanephrines.

    There are some different rules for adrenal adenomas sine they are sometimes considered "benign " because they excrete hormones and don't act like other cancers, so not sure if alternative protocols are meant for them .

    They're not getting back to me because they're assuming the tumor is benign and indolent aside from the massive metabolic damage cortisol can do.
     
  6. burtlancast

    burtlancast Member

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    True.

    But i know the Beljanski herb extracts can alleviate non cancerous enlarged prostates symptoms, which means they affect favourably (shrink) even benign tumors. :2cents

    Also, if this adrenal benign tumor is caused by an unknown endogen pollutant, the Gerson therapy can detoxify your body and maybe cause it to disappear.

    Past chemo patients embarking on the Gerson therapy see the chemo poisons remaining in their bodies evacuated slowly during the treatment.
     
  7. sugarbabe

    sugarbabe Member

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    I am so sorry you went through all that :shock: I have to ask do you regret your butter and rice krispie stint? Do you think it contributed to your gallbladder going bad?
     
  8. haidut

    haidut Member

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    Adrenal adenomas are typically left alone unless there is reason to believe they are cancerous. There are many reasons for it, but probably the main one is that removing the adenoma fails to control cortisol in many cases. The latest approach is simply on controlling the cortisol through anti-glucocorticoid drugs like RU486:
    https://en.wikipedia.org/wiki/Mifepristone

    Cyproheptadine and LSD-derivatives like bromocriptine/lisuride have also been used to control the cortisol. In many cases the drugs cause regression of the adenoma without surgery. Clonidine is another drug that lowers cortisol, in addition to lowering adrenaline. I posted some studies on that on the forum.
    Forum member "gbolduev" said he had the same condition, and he is also not getting it operated on. So you might want to PM him.
    On the natural side, I posted several studies showing 10mg - 80mg retinoic acid daily is effective in humans for Cushing disease. Zinc in 30mg - 50mg doses can also bring it down. Finally, DHEA is the main glucocorticoid antagonist in the body and if you have low levels the doctor may be willing to prescribe some.
     
  9. OP
    messtafarian

    messtafarian Member

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    Thanks Haidut. We traded posts before about my concern with copper levels. I'm worried that if I supplement zinc this will drive down copper as it tends to do. I wish there was a way to tailor levels so that all those bases were covered. After my operation now iron and all associated levels are tanked as well. Waiting on spectracell to get a copper/zinc level, but that only measures serum copper which might be somewhat meaningless. I'm hoping not since it's all I have to go on. At this point since my metabolism became SO disordered I don't think I can be sure any part of my basic nutrient status is normal.

    I wonder what the dosing schedule would be for RU486. As an abortion pill it's a one-time only dosage so I would probably have to get some kind of doctor involved.

    I have a DHEA level test hanging around my house here, thanks again as always for your help. :) I can't wait to try the bromo and the clonidine. Your cypro suggestion was the ONLY medication I used to change from a dripping, sweat soaked mess to some modicum of normal starting several months ago.
     
  10. OP
    messtafarian

    messtafarian Member

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    Oh not at all Janelle. I'm not sure about the truth of this but some people say that people with bad gallbladders should *eat more fat* to stimulate bile. In the meantime my digestion was ripped up and disordered, I was undereating severely and I know the butyrate really helped with my "IBS" symptoms. I felt *much* better doing it.

    The gallstones I had were absolutely massive and could not have been affected by several months of eating fat. In fact I am starting to wonder whether what really started all this was a persistent infection with either e.coli or salmonella that set up camp in my gallbladder. It was terribly infected -- to the point that even the surgeon was shocked. Plain old butter couldn't have done that, I was sick already. Fat is a good choice I think in those circumstances.
     
  11. haidut

    haidut Member

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    If you are getting a copper test when please ask them to do ceruloplasmin as well. Serum copper is meaningless without knowing ceruloplasmin and iron status. Since you already know about iron, getting ceruloplasmin should complete the picture. In people with low iron, copper rises to compensate and if ceruloplasmin does not rise to accommodate for the higher copper a person could get copper toxicity AND deficiency symptoms at the same time.
    As far as RU486, it seems that the same dose used for abortion is useful for Cushing syndrome (200mg - 500mg daily). Often, RU486 results in complete resolution of the adenoma, so adrenal function goes back to normal.
    http://www.ncbi.nlm.nih.gov/pubmed/17984235
    http://www.ncbi.nlm.nih.gov/pubmed/23436494

    Finally, as little as 8mg cyproheptadine a day has been found to be sufficient to control the excessive cortisol. Your doctor may even be willing to prescribe it if you show him the studies on cypro and cortisol I posted on the forum.
     
  12. OP
    messtafarian

    messtafarian Member

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    Sigh, yeah, I asked my doctor the last time I saw her if I could have a ceruplasmin level drawn and she said no -- she said there was no "justifiable reason." Doctors here in the Midwest US are well-meaning but they really don't walk outside the lines -- ever. I've spent more time trying to figure out how to get the information I need in the past year than doing any other thing. It's really frustrating. Slow and frustrating. Getting that spectracell test for a total micronutrient level cost 400 dollars and took a forever number of phone calls. It's very complicated to be sick in America.

    In the meantime I think it's fascinating that RU 486 can resolve an adrenal tumor. You're amazing, haidut:).
     
  13. OP
    messtafarian

    messtafarian Member

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    So I'm reading about Ru 486 and it says that the way it works is to "bind to the progesterone receptor" which gives a false signal to slough the endometrial lining. It seems like what they're trying to say is that this drug mimics a hyperestrogenic state...which makes no sense at all because the other indication this drug works for is uterine fibroids ( which I also have.) You dont get rid of fibroids with extra estrogen, that is for sure.

    I don't understand this at all. Where is the confused smiley?
     
  14. Blossom

    Blossom Moderator

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    I use this for confused smiley :?
     
  15. haidut

    haidut Member

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    The main mechanism of action of RU486 is antagonism of the glucocorticoid receptor. It also antagonizes the progesterone receptor and this is how it causes abortion. Don't think this is the safest drug around, but it is the mainstream treatment of Cushing. Cyproheptadine is probably just as effective, as are the dopaminergic drugs like bromocriptine/cabergoline, and lately GABAa agonists have been used as well (including benzos). Here are some studies to consider:
    http://www.ncbi.nlm.nih.gov/pubmed/15783246
    http://www.ncbi.nlm.nih.gov/pubmed/22983690

    The first link reviews pretty much all drug options known to work for excess cortisol.
     
  16. narouz

    narouz Member

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    Sorry for you pains, mess.
    I had ceruloplasmin checked recently.
    I've been using Walk-in Lab.


    "Ceruloplasmin Blood Test
    YOUR PRICE $30 (Value $73, You Save $43)
    Test to help diagnose Wilson's disease; sometimes to help identify other conditions associated with copper deficiencies."


    Hang in there!
     
  17. haidut

    haidut Member

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    Thanks! :hattip
    The resolution of adrenal tumors is not much different than the resolution of pituitary tumors (prolactinoma) under the influence of bromocriptine, cabergoline, etc. Back in the day it was common to call this issue simply adrenal hyperplasia, and it was understood that antagonizing the factors that promote its growth usually makes it disappear. In the cases of prolactinomas and adrenal adenomas their very product (prolactin, cortisol) is also the factor of growth. So, lowering or opposing it usually resolves the issue. This seems to be also true about cancer. Antagonizing lactic acid inhibits tumor growth. So, once big pharma understand that the battle on genetics is lost, expect to see ads for a "lactate antagonist" as the next big thing in cancer treatment.
    Given that anti-prolactin drugs can resolve adrenal issues immediately shows you the connection between the pituitary and stress. You cannot have good metabolism with high pituitary hormones since they all tend to overexcite the adrenals.
     
  18. OP
    messtafarian

    messtafarian Member

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    It seems like it's really important to figure out exactly what you are inhibiting, since these studies seem to say that pharmacological intervention is hugely successful when the correct, aberrant receptor is targeted. I imagine it's all trial and error even on the part of the researchers since, well, how else would they figure this out in vivo?

    I still have the tumor but symptomatically cyproheptadine worked *right away* -- nearly within the hour -- for me and made me far less miserable than I was without it. It really seemed like a miracle at the time and to this day a lot of those early symptoms have not returned whether I take cypro or not. That was your suggestion haidut and a completely successful one.

    To make the thing go away entirely might take some fine tuning. Clonidine made me into an utter ZOMBIE within a different hour but it didn't hit any of the neurological symptoms at all -- I was vibrating with my habitual fine whole body tremor and for some reason craving alcohol -- so that was probably an adrenaline dip. It should have stopped the tremor if it was coming from adrenaline. I also expected the tremor to resolve with propranolol but it did not. I restarted lisinopril ( ACE inhibitor) which seemed to make things worse. Took DHEA -- no effect.

    I only took clonidine for two days because I actually *slept through* the two days while I was on it. Something weird there -- I understand the sedation effect but this was above and beyond, it was like taking some sort of anesthetic for surgery. I'm wondering if I should halve the dose and try to suffer through a couple days of oblivion to see if it kicks something back online.

    I won't pursue mifepristone -- there are some miracle stories in the research but it seems dangerous to me, like I would take it under strict supervision in a hospital or something but shutting down progesterone receptors seems like an emergency move.

    Bromocriptine on the way.

    And thanks for the suggestion Narouz -- I saw that website the other day. Walk-In Labs is really far away from where I live but it might be the only option.
     
  19. docall18

    docall18 Member

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    I have been using clonidine for the past week. It has worked wonders for me. I have always ran on adrenaline - slim, bit wired, situational stress prone, high BP. However my cortisol is on the low side and cypro really hits me hard. So clonidine definitely seems to lower adrenaline and cypro cortisol.


    Since using clonidine I have had to increase my T3 dose alot. I need to take 100mg/day plus. Otherwise I have low BP and low energy. I also find pregnenolone helpfull. So you could try taking more thyroid..


    Haidut, do you know if clonidine is safe for long term use in doses of 0.1mg/day? I only see mention of its use for short periods.
     
  20. haidut

    haidut Member

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    For some people who cannot tolerate or are willing to take beta blockers, clonidine is their major drug for lowering blood pressure and many have taken it for years with no side effects. Recently, it has also been used as a chronic drug for schizophrenia and no side effects were noted other than sleepiness.
     
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