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Avatar universal

It's Getting Serious

I suffer from a number of conditions, including, Hemochromatosis, polycythemia, Duprytens contracture, severe osteoarthritis, I've had over 300 kidney stones over 20 yrs, in 2007 had diverticulitis & ruptured bowel 2 1/2 mo coma, rhabdomyolysis, hypothyroidism, high blood pressure, high cholesterol, and more.  I have always felt there  had to be an underling cause for this as none of my family have any, save thyroid my MOM. I've sought out studies but a study for a condition exclude me for all my others , seen top specialists to no avail.   I do believe that I'm going to see my Dr  and discuss adrenal issues., BTW, I am the ONLY client of Molina health that has an internist as my PrefProvider. GP's were overwhelmed, barely able to manage my prescriptions. I have been active in my care and have researched this extensively without success. Any ideas or possible referrals I am willing and able to go anywhere in the US to see anyone that might help.  Ironically, all my MD's were sure I was going to die in 2007, my Oncologist described my chart as showing catastrophic failure of every major organ. So, on one hand I suffer from all these maladies, yet I prevail where my Oncologist states, "There's absolutely no medical explanation for you having survived, none."  Any thoughts?   Thank  you for your time
2 Responses
1530171 tn?1448133193
Oh my! You sure have enough on your plate.

Well, the more complex a chronic health situation becomes, the more evident it is, that the are basic underlying fundamentals, which have been unexplored or under-explored, like in your case.

The problem is that you're dealing with a medical system that operates and thinks inside a box.
Even the more open and progressive conventional health professionals, still have to abide by a set of rules, procedures & protocols imposed by the governing medical boards. And this is what might be working against you.

For example, your hypothyroidism regulation is possibly not effective.
Your reverse T3 (rT3) if tested, will probably show higher levels than normal. There's a good chance you did not get tested for this.
Have you benn tested for Free T3 and Free T4? (Type 2 Hypothyroidism)

Hypothyroidism cannot be treated the same, when one has hypoadrenalism (low adrenal function), because the adrenals downregulate thyroid function for adrenal recovery.
When this is not respected and thyroid regulation continues by taking
thyroid meds, it usually backfires after a short lived improvement.

The  big question is how long has hypothyroidism been unregulated, under-regulated, dysregulated, and downregulated (by the adrenals)?
Chronic biological stress leads to hypoadrenalism.

It is important to put some general time line, because low thyroid function over time can cause high cholesterol, diminished bodily functions,
inability to repair heal at the cell level  and when there's prolonged significant organ or bodily system involvement, it can progress to autoimmune or other serious conditions.

In low adrenal function, since cortisol regulates the immune cells in our gut  when cortisol is depleted those cells become dysregulated, making us more susceptible to pathogens like bacteria, yeast, and parasites.

Functional Medicine Doctors trained in Holistic Endocrinology, are better
for treating hypoadrenalism and related issues, because they're not bound by Coventional Endocrinology's strict protocols..

Genetics is another medical field which is not adequaltely explored in the areas if & where options for treatment exist, like epigenetics & nutrigenomics.

In your case, you can look into MTHFR gene mutations on the points at C677T and A1298C.
Low methylation because of Impaired MTHFR function has multiple negative impacts on DNA synthesis and repair, neurotransmitter synthesis,  cardiovascular risk factors and a lot more!
Could this be another missing piece of the unexplained chronic or autoimmune disease puzzle?

There are more possibilities, however, the aforementioned should be
totally ruled out first, as either one of these could be both underlying causes and also stumbling blocks to any attempted therapy, so very little progress can be experienced.

Please note that my comments and suggestions are not intended to replace medical advice.

Best wishes.
Niko






Avatar universal
I barely scratched the surface of my diagnosed conditions.  I had diverticulitis, (thought it was food poisoning), and a ruptured bowel.  I called the ambulance only after my abdomen was distended to twice normal and had 107 temp. I had to really bear down to speak . I was told I was to have surgery the next morning.  I woke from a come some 2 1/2 mo's later, down over 80lbs, too weak to sit up and unable to eat or drink anything without aspirating.  I had a hole the diameter of a volleyball in my stomach and a colostomy bag.  Went to a nursing home, to summarize, had to re-learn to swallow, took several months of therapy and a transition from Boost to a paste, then puree but I still have swallow issues .  They lacerated my vocal cords inserting the tube leaving a 4 inch scar, I lost over 1/3 capacity of each lung due to damage from ARDS and subsequent intubation.  Also severe trauma to my throat and the entirety of both lungs.  I now have heart as well.  I have been through every test there is at a number of places and nothing has been found to explain my constant formation of stones, (over 300 over 20yr) I nearly lost one kidney a year ago as the stones had grown to golf ball size and function was less than 15%.  The procedure whereby a hole is cut into the kidney through the back was performed, but, as usual, I had so many stones of such size that an additional hole was made and another considered.  He surgeon said he removed over 100 fragments the size of "normal stones" but was unable to extract a significant number.to  prevent the fluid from building up.  My lungs   I have developed numerous cysts on my kidney as well.  I have severe degenerative disk disease in my entire back and neck, significant scoliosis, spinal stenosis as well.  I've had severe and numerous varicose veins stripped from both legs and they're bad again. To repair the hole in my abdomen, my surgeon severed my lateral oblique muscles on both sides to allow the flesh to be "Pulled together" as much as possible but a large wound remained and further surgery was neeede. To get the tissue needed to "patch in" the wound, the surgeon cut the tissue of my abdomen stomach area horizontally.  Imagine looking at a steak that is 3 inches thick but must be cut through to create two steaks each 1 1/2 inch thick. The extricated tissue was then sewn in to try to make me whole again.  But due to the size of the wound, there's a piece of mesh larger than a letter size and it's really the only support for the grafts.  It's been faailing and it looks like major work is needed.  Oh, BTW, the first brand of mesh was recalled after being in for 6 or 7 months and had to be surgically cut away to remove.  this is ridiculos .  There's no case studies to look at, nothing to compare with.  It's a consensus of opinion that the only comparable extent of damage might be a soldier that was shot in the abdomen or was hit by a bomb blast.  Unfortunately, no one survives such trauma...just me.  Initially, when I first began to return to see my specialists, each looked at me like they'd seen a ghost...they had, at least per my charts.  My oncologist has actually presented my case at several conferences and a consensus was formed...There is absolutely no medical explanation foe me haaveng survvived the coma, my chart is comparable in severity to deceased patients in the morgue.  The firsst night of my coma the ER surgeon told my family that I was not going to live through the night and when asked to say  the odds, he said he was stretchin it to say  I had 2 to 5% chance of surviving first night.  I have been researching this myelf sice 2007, while having no more than 6 weeks between surgeries for almost tjree years after the repair to abdomen.  I was an attorney for 15yrs before this, have a Doctorate and two Masters degrees so when I say researching i mean it.  I sought any trials I could but my sevearal maladies make me unfit.  BUT, I've been convinced that there is an underlying cause for the 10 or so conditions that have been diagnosed most of which are fairly rare.  None of my relatives back two generations have any of them, save hypothyroidism my Mom,  As I was perusing this and other sites, I found a promising post which may be ths link.  I was fooling myself to believe I am an appropriate case for a site like this.  Believe me, my history is so bizarre and prohibitively extensive that, after filing suit to force them to accept the fact, I have three spcialists as my "Preferred Providers" as well as, a case manager at Molina Insurance, a case management group of my 3 specialists and six more as permanent consultants.  It's an extrordinary  burden on me which manifests in anxiety, stress, and constant appointments testing and so on which overwhelm me at imes.  Thanks for showing an interest that probably did more for me in a positive way than anything else.  
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