1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Observations That May Help Someone

Discussion in 'General Treatment' started by xks201, Oct 6, 2012.

  1. xks201

    xks201 Senior Member

    Messages:
    613
    Likes:
    184
    1) Never assume a pill is going to absorb in your stomach completely or even remotely completely. Always opt for a pill that is not enteric coated that can be dissolved sublingually when possible. I found out I absorb very little of any med orally and I do not even think I have real bad stomach issues. There was a study done on celiac patients and it took 2-3x the thyroxine to achieve equal lab values as in non celiac patients with oral thyroxine pills. With some degree of intestinal inflammation this could very well be your case too.

    2) Some pills may only absorb well in one form obviously...ask the pharmacist and read the labels that come with your script.

    3) You will never feel good if you are hypovolemic. Partial diabetes insipidus is real and according to the master of it on this forum a dose of .4mg-.8mg which is 4-8x the starting dose my endocrinologist gave me is an optimum dose. I must dissolve desmopressin sublingually. I received no benefit from lower doses of .1mg twice per day, only mild side effects. My endo told me I was not hypovolemic based upon my blood pressure rising upon standing but this is the exact opposite of the truth as verified by experts in the field.

    4) transdermal dhea in me at least absorbs far better than oral dhea.

    5) Endocrinologists and doctors are often very ignorant of their own profession.

    6) Run labs to verify everything.

    7) Florinef alone will not increase blood volume like AVP/desmopressin will (not to the strong degree desmo does).

    8) My blood pressure dropped after fixing the hypovolemia with high dose desmopressin twice per day. It was extremely high and nothing would bring it down.

    9) If you have frequent and or excessive urination you probably will never feel good until you fix this because electrolytes will be leaking out at abnormal rates and you will probably become hypovolemic.

    10) drink electrolyte drinks especially if you are just starting out on desmopressin to restore what is lost.

    11) In hypovolemia cortisol need is increased. This alone could be a factor for cortisol depletion. "Stressful conditions, including pain, fever, and hypovolemia require an increase in ACTH and cortisol." http://ajrccm.atsjournals.org/content/163/7/1520.full

    I find it interesting how most of us with fatigue have OI and how hypovolemia can manifest in many different blood pressure readings and test results. There is no hard and fast rule for one reading meaning one thing when it comes to OI. They appear to have treatments for all of them though.

    The most shocking part of all of this to me was the dose of desmopressin required to elevate blood volume significantly and stop frequent high volume urination (.4mg twice per day sublingual desmopressin). Don't assume that because you are not thirsty that you don't have partial DI. That other member posted a study showing that most CFS patients had partial DI when they measured their blood volume in relation to their serum AVP levels. If you think about it, the body may not crave water if it is low on electrolytes because that could further dilute the existing electrolytes.Whenever I tried to increase florinef my blood pressure would just skyrocket. Maybe now I can add it since there is more fluid volume from higher doses of desmopressin.

    I think fluid dynamics have a lot to do with a lot of cases of CFS, particularly because they are hard to measure. Another member I mentioned earlier even passed the water deprivation test (which tests for diabetes insipidus) once and he was peeing 7 gallons per day. I don't believe that test is worth a damn. If you wake up a lot peeing or pee a lot it is worth investigating this.
    MeSci, taniaaust1, merylg and 3 others like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    It seems that the hormone pregnenolone, even if no GI issues isnt absorbed well orally. It seems to be commonly used transdermal for better absorption. DHEA i have seen as the opposite but then these were non cfs people without GI issues too. Also sometimes different brands can make a difference especially supplements.
  3. xks201

    xks201 Senior Member

    Messages:
    613
    Likes:
    184
    Exactly.... that's why I recommend pharmaceutical grade versions everything because I have had a varied experience with just about everything.
    merylg likes this.
  4. xks201

    xks201 Senior Member

    Messages:
    613
    Likes:
    184
    I also want to say be careful with thyroid hormone...especially t3. 25mcg of T3 will put me in adrenal crisis even while on the strongest replacement form of cortisol. Everyone's body is different...which is why follow up labs after starting treatment and periodic labs indefinitely after that are necessary. I don't mess with t3 anymore because my body burns it up too fast and zaps my cortisol.

    I know of people that can take 100mcg of t3 at once and be fine though....so there you have it.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    they generally say to treat adrenal dysfunction before going after thyroid, so optimising cortisol with pregenolone and good dhea first then add small doses of T3 like say 6mg at a time. Thyoid can use up adrenal hormones so if low, can leave u with next to no adrenal hormones.
    Its all about the go low and slow method
  6. Vincent

    Vincent Senior Member

    Messages:
    116
    Likes:
    60
    Baltimore, Maryland USA
    You may want to look into adrenal glandulars, I've personally found them helpful.
  7. xks201

    xks201 Senior Member

    Messages:
    613
    Likes:
    184
    Just not a huge fan of T3 in general because the half life is so short. And I've read varied accounts of if slow release t3 even absorbs down the intestines or not. I guess some of us have no choice and don't convert t4 to t3. It takes me like an equivalent of 60mg of hydrocortisone to recover from an adrenal crisis caused by just 25mcg of t3. lol
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    I thought T3 had a long enough 1/2 life that once a day dosing was enough. T3 only is mainly used to treat reverse T3 problems and treatment is currative?? if needing life long thyroid treatment then natural thyroid with combo of t3/4 is apparently the go.

    I have found pregnenolone works well to improve cortisol levels. Although sometimes i feel it builds up in my system and need a break from it?? maybe this is because my thyroid function isnt optimal although body temp has improved while on preg/dhea.
  9. xks201

    xks201 Senior Member

    Messages:
    613
    Likes:
    184
    What brand pregnenolone do you take? Is it transdermal? In rats to sustain steady t3 levels it takes dosing like twice a day, maybe more. My endo appears to think this too.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    i use a transdermal pregnenolone 100mg per ml at the moment i use .3ml/30mg on average, im experimenting with dosing. I get it made from a compounding chemist, i like the stronger strengths as u dont need as much cream to spread. I think if i did t3 i could probably handle more pregnenolone but with that extra energy could make me 'crash', the extra energy is good but its also about recovering too, havent really worked that one out yet. Anabolic steriods would fit that part but getting prescribed these would be a different storie. Growth hormone seem easier to get but then it comes to being able to afford it.

    cheers!!!
  11. voner

    voner Senior Member

    Messages:
    230
    Likes:
    141
    Excellent thread. A voice of experience.

    I have been going down the route of hypovolemia, Endocrinologists, et cetera. In addition to the many excellent points made, I want to reemphasize one of the points.

    6). Endocrinologists and doctors are often very ignorant of their own profession.

    As my primary care doc said, "my experience with endocrinologist is they are very black and white people. Nothing is partial. It may be very difficult to get Any endocrinologist to treat you."This was my experience. Finding the Endocrinologist who will be willing to look a little bit out-of-the-box is very difficult.

    Also, desmopressin is a pharmaceutical that can send the homeostasis of the body out of wack pretty quickly and end you up in the hospital, etc. That's One of the reasons why xks201 Also pointed out to take lab test to verify everything.

    ******I was lucky in the fact that my primary care doctor consider desmopressin to be a drug he would be willing to prescribe, because he Was familiar with Prescribing it for little kids who wet the bed. So, I took the option of using my primary care doctor as my desmopressin prescriber. It has worked out very well. He's cautious and So am I. As usual, go slow and low..... ********

    In my experience, Desmopressin is very effective as a blood volume increaser. On the downside, you can dilute your blood enough to mess up the homeostasis dramatically...

    Now that I'm better educated on the subject, I keep wondering if a kidney doctor might not be a better doctor to have the desmopressin discussion with. Desmopressin is definitely a substance they are Quite familiar with.....

    Cold feet, Cold Lower legs? Anyone? That was me. POTS with Ice box below my knees. Desmopressin has significantly helped. Not perfect but certainly helped. I have not noticed any other significant changes yet. I have only been on my current dosage for a couple weeks, though. As xks201 noted, The lower dosages evidently did not increase the blood Enough because I had no symptomatic changes. I am at a total of 0.6mg/day, 0.2mg/3x day.

    I remember watching a video a few years back of Dr. Bell talking about XMRV and he got a question from the audience about blood volume in ME/CFS. Dr. Bell said that about every patient he ever checked for low blood volume had low blood volume. The patient told him, "I have my blood volume checked and it's low, what can I do about it?" Dr. Bell just kind of shrugged and's and said that's the problem nobody knows what to do about it. So I never paid much attention to the blood volume angle, because I figured there was nothing you can do about it and it was Obscure test anyway. I would've never pursued the desmopressin route without the kindness of Another patient in the PR forum. The point is, desmopressin can change your blood volume and changes dramatically. You just have to approach this with a go slow and low conservative process. Test frequently

    I'm not trying to degrade Dr. Bell here, by no means. The man is a wonderful wonderful person and Doctor. I'm just telling my story.... The point being made here is about desmopressin, not Dr. Bell. Anyway, my memory beyond a couple months is horrible....

    xks201, Thank you for starting this thread, I hope it's helpful to some people.
  12. xks201

    xks201 Senior Member

    Messages:
    613
    Likes:
    184
    Voner have you checked your other hormones? What symptoms remain? Everything? Thank you for your contributions.
  13. voner

    voner Senior Member

    Messages:
    230
    Likes:
    141
    My hormones seem to be pretty level, Except cortisol, which I consider to be autonomic system related. We all have similarities and we all have differences!

    Desmopressin is just about the only thing I have ever tried that That moved any one of my symptoms at all. So far it only symptom that is changed are ice blocks below my knees. They are now off and on toasty, sometimes cold and then toasty warm. Before desmopressin, they were cold most the time. My Heart rate still elevates upon standing, et cetera. I have all sorts of other pain, sleep, etc., symptoms that have not been changed a bit. Time will tell.

    One thing for sure, the autonomic system is a very basic function within the body and It affects all sorts of different basic functions of the human body.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    Great list but I'd add to get and keep copies of your test results after the following quote
    What Ive found with more then one doctor is that when a test abnormality comes back, if it is something they dont know much about, they often then wont even tell you and just ignore it completely. Also abnormalities they dont think are important can end up being so
  15. AFCFS

    AFCFS Senior Member

    Messages:
    312
    Likes:
    243
    NC
    This has also been so true with me. I have found that a careful going through the tests and researching everything is a good route. Of course, on the Internet you can find anything so I do a lot of broad research and try to get kind of a consensus is my mind. Then I take the research to a doc that is willing to look beyond his own boundaries - a hard thing to find in and of itself - have been through four and then found one that will listen. Then I am persistent.

    In example, I recently had a plethora of tests and the IGF-1 was elevated as was the AST and ASL, with ratio that could cause some concern. I found that it could be liver related, an early warning sign of acromegaly, or nothing at all. I took my mental notes to the appointment. The doc said that acromegaly is likely accompanied by enlargement of hands, feet, jaw, etc. I just said that not to argue the point, but I read that these symptoms usually do not manifest for perhaps 5-7 years after the pituitary is compromised by tumor, which might explain many of my CFS, Adrenal Fatigue, Depression symptoms. Sometimes I think you need to remind them why you are there, seeing them.

    That prompted an order for an pituitary MRI and abdominal CT scan. I had also recently just presented the same concerns over lab results to another doctor, who said "insignificant."

    I typically had asked If a lowered or elevated level is insignificant, then why they bother to run the tests in the first place. After all it is an expense to me or the insurance company and potentially critical to my health. I used to get bombarded by "doctor is smarter than God" rationale and attitude. I have now taken that attitude to easily translate to a a second, third, fourth, fifth opinion. It is a hassle but when I have then found someone that listens and actually wants to act, then it feels good.

    Of lesser importance, but also a good feeling is that I then get to tell the other doctors that they are "FIRED!" - something really difficult for their fragile egos to take, but I suppose they make up for in revenue form new patients who do not question them. Question everything!
  16. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    I think usually when a doctor does a certain test, its cause they have an idea about just "one" illness that you "may" have. eg if they thinking someone may be diabetic but instead of high glucose, abnormally low glucose comes back.. this is often then just ignored with the patient not being told, as the reason doctor ordered test done for was that he/she just wanted to know if you had diabetes. (Its like they struggle to think outside their own ideas).

    As you mentioned, many things also take time to develop so there is gaps between what the normal range is.. and what level something needs to be for a certain illness to be diagnosed.. eg for diabetes one has to have glucose of 11 or over (non fasting) before diabetes is diagnosed.. but the normal range is lower then that. Doctors usually dont mention when someone is sitting in one of those gaps.. out of normal range but not high enough to be diagnosed with the illness yet.

    Another example is Addisons disease.. by the time that is diagnosed most patients adrenals are 90% not functioning (from what Ive read). The medical profession in general tends to ignore cortisol issues until Addisions occurs.. and ignore adrenal insufficiency and the failing adrenals till they actually fail.

    Being aware of those abnormalities can really give help someone to know the things they need to keep an eye on and pick up a serious developing issue years earlier... to the point where you can hopefully take preventive acttion for the illness.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,526
    Likes:
    4,134
    Cornwall, UK
    I saw an endo who is considered to be one of the 'top men'. He too was an ignoramus. He said that DI could not be partial and that you could only have it if you were born with it.

    I did my own research and found that it can develop due to a range of factors, especially:

    · Head trauma
    · Encephalitis
    · Autoimmune disease
    · CNS infections

    I too passed the water deprivation test. I was told to remain very still during the test. This was extremely difficult as there was no comfortable chair, and my clothes became tighter and tighter until they were hurting me. Fluid was clearly accumulating. I hypothesised that the lack of movement was causing fluid to pool in the lymph ducts. I advised the doctors of this and my other thoroughly-researched, relevant info, but they ignored it.

    When I had a severe episode of hyponatraemia the docs decided that it was due to taking too much desmopressin (I didn't) and drinking too much fluid (I didn't). This was despite the first hospital doctor observing (correctly) that I was dehydrated. My high serum albumin indicated dehydration, but not a single doc to whom I have pointed this out will take it on board. When I eventually pressed the hospital to tell me exactly what objective criteria they DO use to ascertain hydration status, their reply was that the 'objective laboratory markers' supporting their conclusion that I was over-hydrated "include a low serum osmolality, low serum sodium, a low serum urea and a low haematocrit." Two of these are somewhat tautological in the circumstances, being that I had been admitted due to low serum sodium, which would in turn produce low serum osmolality.

    Low haematocrit can have a range of other causes.

    My own analysis of the test results was that serum urea was at first normal, then rose to high/uraemic before falling again to the high end of the normal range.

    Instead of being administered intravenous saline using the cannula inserted by the first doctor, I was put on fluid deprivation. The cannula was overlooked by all staff until I alerted one to the fact that the area was itching. The grimaces on their faces as they removed it indicated that my hand was not a pretty sight after the cannula being left there unattended for several days.

    I am rambling a bit now, but suffice to say that on escaping that 'place of healing' I ordered my friends never to take me there again.

    I now top up my desmopressin subscription by buying some online, despite having been living in poverty for many years as, on the one occasion when I asked if it could be increased, my request was rudely refused.

See more popular forum discussions.

Share This Page