Am I over-reacting?

[missy_girl23]

Hey everyone,

I feel a bit silly for posting on an online community when chances are I don't have leukemia but I'm a bit desperate. I've been searching for a cause of some long-term symptoms for a while but recently some more acute issues have begun that are worrying me.

6 weeks ago, I started getting small bouts of petechiae/purpura. I figured out that's what they were by googling it and then it was recently confirmed by a doctor. They come and go - a handful on my belly or legs or neck, never an overwhelming amount. I did have quite a bit down my neck and shoulders a few days ago and it convinced me to go to the doctor.

3 weeks ago, I started getting bouts of chills. I've had probably 3-4 bouts of chills since then, I finally invested in a thermometer and during the last one, my temperature went up to 99.5 degrees, which I know isn't high, but my regular temp is 95.5-96 so it's high for me. I also think I've had episodes of minor fevers outside the chills but I can't confirm it (I only bought the thermometer 3 days ago).

Over the last few weeks I've had fullness after a few bites of food and loss of appetite that has considerably worsened over the last week. I also have abdominal pain that's focused around my middle and mid-upper left side. In the last week as it's worsened, I've lost 6lbs. I've also had a cold for the last 6 days that seems to be lingering.

I have some bruising but it's not excessive. I also have fatigue (although it's not new), weakness, dizziness (especially postural), my skin seems very translucent these days (veins are visible everywhere), and my nail beds have turned purple/blue over the last few weeks. I've got some joint pain and have woken mid-night with chills and awful hip/leg pain specifically. I'm constantly freezing, which is new for me. I've also had severe headaches over the last few weeks but I do have a disorder that could potentially explain the fatigue, dizziness and definitely the headaches, so they might not be related. Either way, I feel pretty gross, all the time. I don't have excessive bleeding - I had my period last week and while it was heavy, I don't know if it was excessively so, just filled with extra large clots (sorry for the TMI). I had blood work this week and I clotted just fine afterward. I'm either really pale or really flushed (because of hot flashes) so I don't know if I actually look pale? The petechiae/purpura come and go, some days are worse then others - like today, I only found 2-3 new spots, whereas late last week, I had so many I couldn't count them.

After I found the larger patch of petechiae/purpura last week, I went to a walk in clinic and the doctor said we needed to rule out clotting disorders. The doc reviewed my history - I had blood work done in March before I had a very large and serious surgery, and apparently something was up with my INR then (the walk in doc asked if I had the petechiae then and I didn't) but it wasn't enough to postpone my surgery, so I guess it wasn't that worrisome.

I did the clotting bloodwork this past Friday and I don't have an appt to pick up the results until this Friday - although I'm thinking if it was anything serious, they would've called me? I only started googling the symptoms (bad idea) after I saw the doctor this past Friday and I have freaked myself out because a lot of my symptoms are in line with leukemia. But  wouldn't I have bleeding issues? How quickly does it develop? Would it have affected my INR back in March even if I didn't start having symptoms until early August? Or does it even affect INR (to be honest I don't know what an INR is)? Why would I be having this bouts of petechiae all of a sudden if my bloodwork is normal? And wouldn't my petechiae be getting worse if it was leukemia, not randomly occurring? Chances are the doctor would've called if my bloodwork showed any large abnormalities, correct?

Again, I'm sorry to bother everyone, I'm just worried and feeling sick and looking for answers. Good luck to everyone!

[Ken_PA]

Hi, Dee. Did you try niacin and then again with quercetin beforehand?

[Dee1956]

Ken thanks so much for all of this information, I am going to read over it a few times.
Very helpful, I found out that my Mom is hypermobile

[Ken_PA]

Hi, its been a while and I've forgotten some of your details, so I'll answer generally.

I'd watch the long youtube on mastocytosis by Akin which has the Tx (which involves MC stabilizers). But you probably possibly are more toward MCAS, since you don't have spontaneous overall flushing. (I recall a youtube of a woman having an attack in an ER.) Or you might have MTHFR - but you seem too severe for just that

Probably a biopsy of a red spot to count MCs would be revealing.

You might have a very hard tine convincing a doc of anything, though.

Progressing? I'd guess not, unless eosinophils get recruited, They cause  remodeling.

Anaphylaxis? Probably not, because that typically involves IgE. Still, Dr Theo prescribes epi pens to everybody.

"If I chose to ignore the symptoms..."   :)   I'd instead try the quercetin.

"Could it resolve on it's on?"  doubtful

"Will I have an anaphylactic reaction if I don't treat it? " The chance is small, but the result could be very large. Especially from hymenoptera.

"contact dermatitis" well, maybe that involves IgE

There is also atopic dermatitis.

Let me know what you think of the Akin video. Here you go:
https://www.youtube.com/watch?v=RPUr_ZdlEhk

[missy_girl23]

Sorry, I accidentally posted my comment without finishing! I had meant to add to yesterday's comment - would mast cell issues cause contact dermatitis? I've had this outbreak of irritated skin over my knuckles and fingers on one hand. It started happening sporadically last winter and I originally thought it was a dry skin but it doesn't respond like dry skin. I only ask because when I was sick over the weekend, I noticed it had spread onto my hand and I now have a few brown patches that are rough to the touch and will inflame red. Could it be related?

[missy_girl23]

Oh

[missy_girl23]

Hey Ken,

I'm sorry that I kinda disappeared for a while - it was a lot to think about! I did some research on mast cells and made a few realizations. For instance, I've had heightened issues with watery eyes, runny nose, etc over the last few months when my petechiae was at it's worst and I was taking anti-histamines daily and it was helping. I had totally forgotten about that but if I'm reading correctly, it could be a sign of mast cell issues, correct?

I watched the mastocytosis video you suggested and I defintely have something similar to the raised red dot like rash (urticaria pigmentosa) they show in the video. It's across my stomach (which is also where I find most of the petechiae patches as well) and while I only have a handful of them spread out, I noticed them a few weeks before the petechiae. They are not generally itchy - unless I exercise or take a shower, then I get quite itchy and it feels like I am being stabbed with little needles. I also get flushed as a result. Does this sound like mast cell issues? The flushing/itchiness/stabbing feeling has been happening for at least 2 years, the rash/petechiae has been since August. Sometimes the rash things blister and sometimes they are just raised red bumps. I honestly have very few though - maybe 3-4 on my stomach that I am aware of - but it's also hard for me to tell because I have extensive stretch marks.

I did mention hives previously but I was trying to minimize my experiences haha! To be fair, I can't be 100% certain they were hives - it was on my face and I was just scratching them but never checked in a mirror. It happened on 2 separate occasions.

I noticed my chills seem to correlate with my blood pressure (I can't confirm it was low as I was travelling and didn't have a BP monitor but I think it was). I recently had a spell and I was very nauseous, had bad abdominal pain, was very dizzy and keep greying/spacing out and I was uncontrollably shaking, I was very cold. My heart rate slows right down as well - could this be a mast cell issue? I know we had discussed the possibility of having POTS previously, but these days, my heart rate is more often at 50 something BPM then over 100 BPM. Or is it common to have a slowed heart rate with POTS in addition to the tachycardia episodes?

I have not used any more niacin since the first flush last week but I will continue to do so. However, I think my body has calmed down? I travelled over the weekend and I was quite ill for most of the trip - I could barely eat due to severe bloating, nausea and abdominal pain. I had my chills episode during the trip as well. I also had lots of watery eyes/nose/etc so I relied on anti-histamines. However, since coming home, my skin doesn't react with the same crazy red mark to a simple scratch. I have to actually apply pressure to get it to react now. My GI problems aren't at the same intensity but they are definitely still causing issues and I'm having trouble swallowing again. But like I said, it takes a lot to make my skin react when even just last week I barely touched my skin and it reddened. Does that rule in or rule out mast cell issues? Could it just be a weird fluctuation or am I doing something that's helping?

I need to bring this information to my doctor, however, but I don't really know what to ask for. Do I get a referral to an allergist or some other kind of doctor? Do I ask for certain tests?

If mast cell activation disorder/mastocytosis really is my issue, then what is the chance that I might have an anaphylactic reaction? That's my biggest fear. What is the progression of this like? If I chose to ignore the symptoms, will I gradually get worse? Could it resolve on it's on? Will I have an anaphylactic reaction if I don't treat it?

Finally, I feel really awful for continuing to post in the leukemia/lymphoma community when that is definitely not my issue. Should we move this discussion else where?

Once again, thank you for all your insight. You have done wayyyy more then my own doctor at point. How do you know so much about all of this?!

Hope you've been well.

[Ken_PA]

"So the crazy response to the niacin is indicative of something wrong with my mast cells?"
Most likely. You can find youtubes showing people who get upset because merely their head and neck flushes - that's probably usual.

" ...no hives or anaphylaxis"
You did mention hives above. Regardless, experience varies between patients. The immune system is quirky.

"through the pics and nothing looks familiar
I was thinking of the speckly, spotty ones.

Try this for starters:
https://www.youtube.com/watch?v=CplxXGpFeKQ
"Mastocytosis with Theoharis C. Theoharides"
20 minutes

"(I think I'm pretty scared of having a mast cell issue and would like it to be something else haha!!) '

I noticed :)

P.S. If you have hypercortisol, then that suppresses immune reactions just as prednisone would.

P.P.S. You can cut tablets to make a smaller dose.

[missy_girl23]

Hey Ken!

So the crazy response to the niacin is indicative of something wrong with my mast cells? I definitely have mixed feelings about all this - so much would make sense, but other things don't fit. For instance, no hives or anaphylaxis.

I only briefly scanned through the pics and nothing looks familiar as of yet. I have no patches (although the flush yesterday brought out some new petechiae so there must be a connection). I tried scratching some petechiae patches and while I get the giant red marks from very little pressure on my chest and stomach, it's a lot fainter on my arms and no response on my legs. The red marks stayed flush with my skin and did not cause heat or swelling, and no hives.

Could I be in the beginning stages of a mast cell issue? Do they progress a certain way? Or are we heading in the wrong direction? (I think I'm pretty scared of having a mast cell issue and would like it to be something else haha!!)

What do you think? Thanks again!

[Ken_PA]

we can probably discard hypothyroid (you temp fell even more from MC degranulation). Also discard Asian Flush Syndrome (you don't have to be Asian to have Flush Syndrome, btw).

Also probably discard morphine allergy (as a real IgE allergy, not a sensitivity), since morphine aggravates urticaria pigmentosa: https://en.wikipedia.org/wiki/Urticaria_pigmentosa

[Ken_PA]

Congratulations, Missy - now you know. The rest of the diagnosis is probably downhill, though still complex.

Next step:
urticaria pigmentosa,  find a photo that matches you:
https://ixquick.com/do/search?cat=pics&cmd=process_search&language=english&query=urticaria+pigmentosa&ff=

Then scratch a pigmented spot and see if it turns to hives. We already know the chest so pick somewhere else.

Your next flush should less, and so on. It's like burning off the histamine, etc. I like it, it feels very therapeutic.

Don't try quercetin just yet.

Be back later.

We're looking at benign (not malignant) mastocytosis or more probably MCAS. (and possibly still Cushing's as a complicating factor.)

[missy_girl23]

Hey Ken,

I took the niacin - it was a 500mg tablet, it was all that was available at the drug store. It was awful, I'm still flushed and it has been almost an hour. It's just starting to reduce now but I am covered head to toe in a bright red tingling burning flush. I also was super dizzy and I ended up with the chills and my temperature dipped to 95F. Literally every spot on my body was affected, my poor mother was by and nearly had a panic attack, I had to talk her out of taking me to emerg. I also took it with food instead of on an empty stomach because I've got a pissed off stomach as is and I didn't want to worsen it (they think I have an ulcer but I've been on multiple medications and it continues to reoccur - at my next doctors appt, I am going to request tests/etc to confirm if it's an ulcer or if it's something else. It's a lot of burning pain, abdominal distension, nausea and difficulty eating).

Am I supposed to flush that violently to the niacin? My father apparently takes 300mg on a daily basis and has never been affected. Is the flush clinically significant? What does this mean in regards to the mast cell disorders you were previously talking about?

If there was something going on with my mast cells though, wouldn't I have had flushing episodes/anaphylaxis/etc? How are the petechiae (which are still showing up) and the red marks on my chest that occur from the slightest touch related to everything? I'm sorry for all the questions, I'm just trying to catch up to your brain ahah!

Could the Eosinophilic Esophagitis be seen on an endoscope or other GI test? I really want to know if it's truly an ulcer causing my issues or if it's something else and could the doctors see if this esophagitis is present then?

The doctors are aware of the morphine issue - I was on a morphine pump in hospital at the time. I have had morphine multiple times previously but this was the first time I ever reacted to it and so they gave me Benadryl and I was taken off the pump and put onto other drugs.

I think that's it for now! Once again, thanks for all your help - I feel like I'm finally getting some ideas that may finally lead to some answers.

[Ken_PA]

Well, 500mg of niacin would make you flush a lot; I'm not sure about only 100mg or so.

Take on completely empty stomach, no aspirin or NSAIDS.

[Ken_PA]

"I do have trouble swallowing - things get stuck/move slowly and I frequently feel like there's a lump in my throat. I always attributed it to my Chiari, though."

Sounds quite possibly like the beginning of Eosinophilic Esophagitis, which has the potential to be a big problem. It is an "emerging disease" which means even an endo might not be well acquainted with it.

"I will get the niacin and quercetin, try it tomorrow and report back!"

You don't take them together. Just break open a capsule and try 100 mg niacin first - you want to be very cautious and prudent.  You will flush a lot. Be wary of a drop in BP, so stay sitting.

"itchy from morphine"

did you report that to a doc? drug allergies can severely harm kidneys

"Also, my GP doesn't think the BP/tachycardia episodes are something to worry about..."

Probably because you're not bad enough to pass out - but you'd said that sometimes you almost do have the syncope. Falling and cracking your head can be very serious.

Let me know how the niacin goes.

[missy_girl23]

Hey Ken!!

I'm not Asian. I'm Caucasian and I have no real cultural heritage - maybe some European way back, but my family has been in Canada for as long as we know.

I've had flushing episodes for most of my teen years. Any type of emotion and I end up with heat and redness spreading all over, especially my face. I do blush easily!

I'm pretty sure they found stones when removed my gallbladder, but I will definitely get the pathology report. They had found stones previously when I ended up in the hospital from a gallbladder attack so I would assume there were stones when it was finally removed?

I do have trouble swallowing - things get stuck/move slowly and I frequently feel like there's a lump in my throat. I always attributed it to my Chiari, though.

Some insomnia, but not really - I think any incidents are mostly caused by pain/nausea/etc.

I will get the niacin and quercetin, try it tomorrow and report back!

I mentioned diabetes insipidus to my endocrinologist at the recent appt and the endo didn't think I had it. I can stop drinking as much water as I do, it just makes me feel awful when I drink less then 4 litres a day.

Never had a tolerance test for my blood glucose, but my recent bouts of blood work showed normal fasting and random glucose levels.

I have hay fever but no other allergies. Except that I get really itchy from morphine and I've noticed recently that certain foods make my tongue a little numb. Never had a sting before.

I don't have a POTS diagnosis so no compression stockings. I suspect POTS but I'm not even sure if my suspicions are correct - I have the low BP and occasional bouts of tachycardia but no real issues with blood pooling in my legs. Also, my GP doesn't think the BP/tachycardia episodes are something to worry about so I can't see a specialist (I'm in Canada and health care is a bit complicated).

I will, however, be taking whatever your final theories are to my GP to get testing for them!

I think that's all your questions!! Let me know if you have any more!

[Ken_PA]

oh, there is a urine test for a histamine metabolite (methyhistamine), but I don't think that is necessary at this point - and IIRC that's for people who have periodic flushing, in that you take a baseline then test right during/after a flush

also there is biopsy for suspected mastocytosis, IIRC

[Ken_PA]

repeat:
2) Was your removed gallbladder free of stones? **VERY** important to know that answer. (acalculous cholecystitis is a whole different etiology -- maybe/probably eosinophilic)

------------

you must get the pathology report on that

[Ken_PA]

Okay, Missy, on to more head exploding. Not in any order.

1) alcohol--> flushing
No, not histamine. Likely that is vasodilation from ethanol, greatly exacerbated by lack of alcohol dehydrogenase.  Are you Asian?
https://en.wikipedia.org/wiki/Alcohol_flush_reaction

Do you get also hangover symptoms from one glass? (possibly lack of acetaldehde dehydrogenase).

But, normal flushing (do you blush easily) is related to histamine and also prostaglandin D2.

2) Was your removed gallbladder free of stones? **VERY** important to know that answer. (acalculous cholecystitis is a whole different etiology -- maybe/probably eosinophilic)

Ever have difficulty swallowing?

3) Insomnia?

4) As for PCOS, that's out of my sphere - but if it resolves with weight loss and normal blood glucose then it's probably just an irrelevant offshoot. But puberty was probably a trigger - still I'm looking even before that at the 8 yrs old condition.

5) Yes, I'd get niacin (not niacinamide). But keep 24 hours between ingestion of niacin and alcohol -- else liver danger. Then let me know for the first test.

6) I'd also get quercetin. Btw, quercetin abolishes the niacin flush.

7) Polyuria ruined/diluted your cortisol test that's why you need retesting. Anyway, that's what rumpled says on the pituitary group. She should know.

Yes, she is right that there is diabetes insipidus (not diabetes mellitus).
diabetes = polyuria
mellitus = sweet, the urine actually attracts flies which is how it was discovered
insipidus = tasteless, like a insipid meal

DI is lack of Anti Diuretic Hormone (ADH). But again, there are the H4 receptors in the pituitary.

8) Have you had OGTT for blood glucose?

9) Do you have bad allergies? Bad reaction to bee stings?

10) Were you given compression stockings for POTS?

[missy_girl23]

Hey Ken!

Wow, this is a lot to take in all at once haha. Definitely "head-exploding" as you put it, but also incredibly relieving to have a direction to go in!!

I know nothing about histamine in foods so I googled it and wine was on top of the list - I had half a glass of wine with dinner and I was so red and flushed that the waiter even commented on it. Certain foods make me flush like that. Is that what you mean by reacting? I just thought it was normal!

I don't think I've ever taken niacin so I have no idea if I would flush from it. Is that something I should try? Should I go on that MC stabilizer you recommended before I get tested for mast cell issues? How do I even get tested for mast cell issues?

I've had random symptoms of Chiari my whole life (very unbalanced, lots of falls and bad coordination) but I got into a very bad car accident 5 years ago and I had whiplash. It triggered the start of my Chiari symptoms and the headaches, dizziness, visual issues, all started then. Could that have been the trigger you're talking about?

Also, I've never had stomach surgery! The surgery I had was a brain surgery for my Chiari. I did a weight loss program that involved shakes, but no stomach surgery - I was actually too chicken to do it.

The weight loss when I was young was definitely not over eating. I had been chubby my whole life but my entire family is thin and fit. I ate what they ate, did what they did. I did end up developing an eating problem which caused subsequent weight gain but I maintain the first weight gain at age 12 came out of nowhere.

I'm honestly not sure why they were testing my cholesterol that young! I think it's because I was chubby - probably about 10-20lbs overweight despite my active lifestyle. Doctors were obsessed with the fact that I was chubby so they probably tested things because of that. The high cholesterol was blamed on the weight so I was never tested for any reason for it. I actually had raised liver enzymes from about age 15 to age 22 and they figured it was fatty liver/gallstones (so I had the gallbladder removed). My liver enzymes are normal after my recent 80lb weight loss.

Doctors blamed the weight gain at age 12 on PCOS. I also had issues with amenorrhea and didn't have my first period until this past year, after I had lost the weight, meaning my first period was age 22 (I'm 23 now). I've never had cystic ovaries but my FSH/LH level and my symptoms were diagnostic enough apparently. However, my recent endocrinology bloodwork came back a bit confusing.

FSH - 5 IU/L (range 1-11)
LH - 4 IU/L (range 1-25)
Estradiol-17 Beta - 80 pmol/L (range 70-530)
Free Testosterone - 0.9 pmol/L (range 0.8-12.1)

Wouldn't my estradiol and testosterone be higher with PCOS? Also, thanks for the tip about the cortisol test! My endo tested my 8 am cortisol didn't give me a 24 hour urine test. This was my cortisol:

Cortisol - 453 nmol/L (range 170-720)

I figured I would include all of that hormone stuff in case it ties into your theories!!!

Again, thanks for all this! My head is spinning!  

[Ken_PA]

Let's see...

getting genetically confirmed as EDS doesn't really get you anywhere, unless it's with the bureuacracy/insurance. You still have to find what to do about it, probably on your own via experimentation.

Also, with hypercortisol, you really really need to learn about low GI eating. (I did that for my father when he was on 60-80 mg prednisone.) I hear often from people (e.g. Dr. Oz or professional dietitians)  who have no idea what really is low GI and what isn't - bit they insist they do know. It's astounding to me.

[Ken_PA]

Btw, (and I hope you can read along with the staccato fashion I'm using so as not to impede thought flow) you probably know that stomach surgery has some surprising effects, such as immediate (i.e., one day) changes in lipids. So we don't and probably cam't know how you were affected, hormonally or otherwise.

Now, I have discovered your post of May 2014. I think you absolutely need retest for cortisol. Can you get that done yourself? No order needed, just cash.
http://www.walkinlab.com/catalogsearch/result/?order=relevance&dir=desc&q=cortisol&btnSearchSubmit=

"I gained 80lbs at the age of 12 for no reason"  You sure there was no overeating? Then it's hormonal.

"was diagnosed with extremely high cholesterol/triglycerides at the age of 8 (pre-weight gain)"   Why were you even tested? Fx of Familial Hypercholesterolemia? If not, then THAT has to be a big clue. If not FH, nor eating a ton of food, then maybe something with your liver, causing it to export lipoproteins like a deluge. But why? Virus? Parasite? Allergy?

Anyway, it must be nice to know that none of this is your fault :)

[Ken_PA]

Thanks very much for the compliment, Missy. This is very interesting. I'm guessing that you have either a very, very rare condition, or else you have two rare conditions. The pituitary is the master gland as you must know, but the Mast Cells were originally called Master Cells  because they orchestrate so much.

You are very brave to have endured through all of this.

The link to bruising, I am thinking, could be heparin. The hypotension, histamine. Do you react badly to high histamine foods? Some with MCAS (easy degranulation)  do, some don't. We'd also have to eliminate actual mastocytosis (proliferation), too.

Do you flush tremendously with niacin 500 mg?

OTC quercetin 500mg is a better MC stabilizer than the pharmaceuticals. I'd certainly try that. Dr Theoharides (mastcellmaster.com) has some studies, but I'd just get the regular (not high priced quercetin.)

"I was having serious GI problems before my surgery but no petechiae or weird things like that - if it was histamine affecting my INR, wouldn't I have noticed something? " The gut is lined with zillions of MCs. But MCs can vary according to their products that they excrete or degranulate, and also  according to a very large variety of receptors.

So we have MCAS, EDS, CFS, POTS, Chiara... all inter-related, plus I think it's worthwhile to look for one kickoff event that might have triggered symptoms. Very bad cold, insect bite, trauma, travel,,, something.

So much to put together, head exploding kind of stuff :)

[missy_girl23]

Ken. Holy ****. Excuse my language but I think you've stumbled onto something?!?! Seriously, you have put together more clues and spent more time interested in my case then a bunch of doctors combined - believe me,
I'm not offended that you find it interesting and I'm willing to answer anything. I just want answers and I think you're the closest I've gotten to getting any!!!

The dermatographic urticaria is kinda similar but also not really. I get the red lines on my skin but they are not raised. The petechiae are also not raised - they're like little bits of bleeding into my skin, they don't fade when pressed, kinda like a bad bruise. I do have raised red bumps on my arms (keratosis pilaris, I think is what they are called?) but the petechiae are new and different from the KP.  I have had one or two instances of hives (I think they were hives anyway) in the last few months; raised itchy bumps that appeared for no reason and then faded over a few hours.

I actually did some research into Cushings a few months because a lot of the symptoms were in line with what I was experiencing but my recent blood work showed normal cortisol levels.

I have always had low-normal blood pressure actually, usually coming in around 100/60 - I recently lost quite a bit of weight through a Bariatric program at my local hospital and my blood pressure was always a welcome change for them! I don't have a blood pressure monitor at home but maybe I will invest in one. I have had it be 90/50. I know my heart rises significantly upon sitting or standing and I have issues with postural dizziness if that helps, but I'm not certain if my BP rises or drops when its racing. I do have some visual disturbances (like blurred vision or corners greying out) during these episodes but I think it's cause I feel faint?

When you mentioned Ehlers-Danlos, my heart almost stopped. I am double jointed and was recently told my joints show quite a bit of instability. I actually only recently noticed my hypermobility but it's become a problem over the last few months and just last week my knee popped out on me. The surgery that I've mentioned in my previous posts was a decompression for my Chiari Malformation and I know the EDS is associated with Chiari. I'm waiting to see a geneticist to get tested for hypermobile EDS - I have the joint issues but no stretchy skin or hypertrophic scars, etc.

You mentioned mast cell disorders (which I know are also associated with EDS/Chiari/etc). Could the petechiae be caused by something like that? Wouldn't I be having more severe reactions then just some red lines and petechiae?

I was having serious GI problems before my surgery but no petechiae or weird things like that - if it was histamine affecting my INR, wouldn't I have noticed something?

I still can't believe you managed to pull it all together, I am so so impressed. Obviously what you have presented is all just theories but you literally have a better job of doctoring/detective work then multiple specialists!! Thank you for all your help, you are wonderful!!!!  

[Ken_PA]

"and apparently something was up with my INR then"

You need to get that report. Mast Cells excrete or degranulate heparin. Also excrete, btw, some powerful proteases (tryptase, chimase) which can create joint pain.

[Ken_PA]

Well, I came back to write some more because you are an interesting case :)  I hope you don't mind me saying that.

It's a clue to know if you have reflex tachycardia, or if BP and HR go up together.

You maybe *should* have hypertension, because of the weight. Since you don't, that might be because of excess histamine, which is a potent vasodilator. Maybe excess nitric oxide, too. Do you have orthostatic hypotension?

I'm thinking of Chronic fatigue Syndrome.

Are you double jointed? (Thinking of Ehler's Danlos)

If hypercortisol (Cushing's), had an OGTT?