We are at our limit. Please, anything will help.

[MomtoGiuliana]

I also experience myoclonic jerks when falling asleep when in a flare up.  I suspect this is common.  So sorry that is added to her long list of symptoms.  It can interfere with good sleep.

I would not assume the salt and potassium is "not working" bc there isn't a turn around in BP or HR within a day.  

In my experience salt and fluids support improvement but if I am in a very bad flare, the improvement doesn't come about within a day.  Very bad flares for me can last for weeks.  Compression hose is very helpful.  Also if she is lying down most of the time that actually could be exacerbating  symptoms after awhile because of deconditioning.  It's very hard when you feel so badly, but unless a doctor has said otherwise, trying to get some movement in or trying to be upright some of every hour you are not sleeping should be beneficial.

One book that helped me when I was in a severe flare years ago was the book Spontaneous Healing by Dr. Andrew Weil.  Besides just being a very hopeful book about the power of the body to heal, he offers some suggestions such as some breathing exercises that I found helpful.  Coping with a chronic illness is very hard.  For some of us the anxiety that comes along with dysautonomia can be challenging to cope with.  It was at times for me.

[rtoth256]

39 minutes ago, MomtoGiuliana said:

Very bad flares for me can last for weeks. 

I don't understand the concept of a "flare". She doesn't have flares, it's just a constant, steady, 24/7 set of symptoms for her. I'm starting to think she may be afflicted by something else, but I have no idea what that would be.

[Looking_for_light]

Unfortunately, seems no isotonic drinks etc around!  

Anyone tried a natural option, or anything like it? 

It's such a lot and can't afford any mistakes.  

Do the various mineral amounts in 2.5ml seem too high if not SR?! 

Anyone possibly know anything on how chloride impacts dysautonomia's? 

Anyone know anything on the ionic nature of it? 

Thanks! 

 

[rtoth256]

1 hour ago, DysautonmiaMatt said:

CMP and RBC(K)

Her potassium serum level was 4.0 mEq/L and hovers between that and 4.16 mEq/L, and the last check was on the 16th of November (when she was in the ER).

1 hour ago, DysautonmiaMatt said:

With less Na her BP is a lot lower would prompt me to ask your Endo for Fludrocortisone but would want aldosterone and renin tested 1st

Endo has ordered aldosterone, renin, liver, kidney function tests. Woo!

1 hour ago, DysautonmiaMatt said:

I have an Emay and it is able to detect all sorts of arrhythmias and tells you what they are.

I didn't know these existed! I'm buying one now. Thank you! If you have a recommendation on any other kinds of medical equipment, throw 'em at me! More data the better. 🙂

We haven't managed to procure Fludrocortisone yet, so this is about the best we can do. A latent snow storm will also more than likely keep us at home for a while, and our doctors tend to ghost us for long periods anyway.

EDIT: ...her FitBit Sense has an ECG function! The things you learn about the things you buy.. 😅

[MomtoGiuliana]

5 hours ago, rtoth256 said:

I don't understand the concept of a "flare". She doesn't have flares, it's just a constant, steady, 24/7 set of symptoms for her. I'm starting to think she may be afflicted by something else, but I have no idea what that would be.

My first experience with dysautonomia was a severe episode that lasted over a year.   After that I got better but since then I have had relapses, "flares" that last a week to 6 weeks at a time.   Some people do have constant symptoms lasting years some have intermittent symptoms but most do get better with effective treatment.  Every person's experience seems to be unique -- based on the wide range of experiences I have seen on this forum over the years.  In some cases people are able to determine a cause or a trigger and treatment of that can relieve the dysautonomia.  Unfortunately for many people this process can be long.  Having a good specialist and good GP can really help.  The support of a caregiver is so important too.  So she is lucky to have you!

[rtoth256]

We now have a prescription for Fludrocortisone from her autonomic doctor! 0.1mg/day starting off.

Kind of scared, but preparing a regimen of supplements and insulin dosing.

We're also (more than likely) going to migrate her Metoprolol Succinate prescription to her autonomic doctor. She did really well on 400mg/day, so treating her for hypovolemic and hyperadrenergic POTS can tackle two diagnoses at once.

We've also requested a case manager for her. I can't do this alone, and neither can she.

[rtoth256]

On another note..

Does anybody have any clear, defined criteria for POTS vs. OH, and the POTS subtypes? I keep seeing that POTS is an independent rise in heart rate with little to no BP effect. This isn't what I've observed in my wife: heart rate rises, BP tanks.

I'm also still stuck on her response to Midodrine: it's non-standard. With it being an alpha receptor stimulator, I expected adrenergic effects: she experienced cold and hot chills, incredible fatigue, had to lay down and had her heart rate sink below 60, dropping to a low of 53 at some point (not sustained).

I'm trying to collect data about what happens when you give an alpha agonist (or any hypotensive agent, for that matter) to a hypovolemic patient. If anybody has any resources, please let me know.

[rtoth256]

Sodium supplements may be doing something? It's hard to tell, both from her reporting her symptoms and her BP.. but her BP seems to be far more stable and she seems to be slowly tolerating some moderate/mild activity.

• She was up, organizing things in her office until she "hit a wall" and needed to lay back down.
• She was sitting and crafting prior to that.
• Both of these were motivated by back pain in bed, pushing her to get up.
• Cumulative time out of bed was measured in hours, not minutes. Small improvement, but I'm wary that it was just her forcing herself up and out of bed.

Tonight, she tolerated standing BP measurements a lot better, and the results seem to show: supine BP was 108/76 (give or take a few points), while her standing BP was 101/84 and 102/77. She was tachycardic, with heart rates of 100 and 102, but she tolerated it far better.

I'm cautiously optimistic.

[Pistol]

7 hours ago, rtoth256 said:

Does anybody have any clear, defined criteria for POTS vs. OH, and the POTS subtypes?

Yes, POTS is diagnosed if there is a sustained increase in HR of 30 BPM, or HR above 120, WITHOUT a drop in BP within the first 10 minutes of being upright.

OH is diagnosed as follows, according to Mayo clinic 

• Blood pressure monitoring. This involves measuring blood pressure while sitting and standing. A drop of 20 millimeters of mercury (mm Hg) in the top number (systolic blood pressure) within 2 to 5 minutes of standing is a sign of orthostatic hypotension. A drop of 10 mm Hg in the bottom number (diastolic blood pressure) within 2 to 5 minutes of standing also indicates orthostatic hypotension 

POTS and OH -- What’s the Difference or are they the Same? (leahynutrition.com)

Criteria to diagnose OH & POTS (theoicenter.com)

What is the Difference Between Orthostatic Hypotension and POTS | Compare the Difference Between Similar Terms

[MikeO]

Seems like a lot going on here. If it were me taking 300 - 400 mg (i am assuming she is not on extended release tabs) i would be falling all over the place and having a hard time with OI and presyncope

I would question your doc this as well. 

[rtoth256]

She's currently not taking any beta blockers, hasn't been for at least a week or more. No medication, just supplements.

She was tapered up to a 400mg dose of Metoprolol Succinate on November 14th, and then due to the quantity of 100mg tablets we had, she only had enough for a few days at that dosage level. On the 14th, though, she felt amazing.

3 hours ago, DysautonmiaMatt said:

Her beta blocker dose might be making things worse and read where beta blockers can lower renin at least at first.

Yeah, her Endo wanted to check whether she's been off the blockers in order to accurately measure renin and aldosterone levels.

[rtoth256]

Some notes for tonight... Approximately 1.2L of fluid currently, 6 grams of sodium, 1.2 grams of potassium, 18mg of iron (supplemental form).

• Supine BP measurements were 106/64 and 100/59. Heart rate was 92 and 90.
  • This is worrying: she's borderline tachycardic in bed at random moments, sometimes for long, long periods.
    • Is this characteristic of POTS? Elevated supine heart rate? How many others experience this?
    • I'm worried this might go beyond POTS, and is instead just heart failure.
• Standing BP measurements were 110/85, 107/84, 109/88. Heart rates were 104, 105, 110.
  • Sodium is doing something. Elevating it is slowly rising her BP, but I'm worried how much of this is the tachycardia.
  • She's more easily slipping into tachycardia. I don't know whether we're uncovering her hyperadrenergic POTS symptoms or if we're inducing them with the increased sodium/hypervolemia...
• Picking up the fludrocortisone prescription tomorrow. Fingers crossed for effectiveness.

She didn't tolerate the standing BP measurement well, definitely worse than yesterday. I don't know whether to attribute this to heart rate or.. anything else.

We're more than likely going to have her back on Metoprolol Succinate again and will continue ramping up the sodium until we start seeing positive effects. It's having some interesting effects on her blood sugar, I don't know if it's a cause/effect relationship, but I'm still data gathering.

Thank you all for your continued support and contributions. It does mean a lot. We've also got a case manager researching different in-state and out-of-state resources. I've linked them to this thread (hi there! thanks for reading this!). It's worth noting that the timeline in the original post is incomplete, and I'll be updating it soon (depending on availability).

We're getting closer...

EDIT: Just reviewed her historical cardiac data.

Something is deeply wrong, and I'm unsure as to whether this increased sodium is.. good for long term use. On the 29th, after washing her hair sitting down in the shower, her average heart rate skyrocketed into the 160+ range according to what I'm seeing from Cardiogram, and stayed there for at least an hour. I don't know whether this was a sensor error, but I'm concerned.

Her resting heart rate has increased from 72 on the 27th to 80 today, roughly corresponding with the increased sodium intake.

Her blood glucose is also spiking heavily, even in the presence of 4+ units of bolus insulin.

I'm glad I've been slowly tapering her up on sodium, because she's more easily becoming tachycardic. I don't know if we should continue this, but am interested in if this is something anybody else has experienced. I'm reaching out to her Endocrinologist and Cardiologist with these results.

[RecipeForDisaster]

Just a couple of quick points… beta blockers can raise blood glucose. Obviously, they mask tachycardia, too. I’m hypovolemic and do OK on a little bit of midodrine. I can’t tolerate very much, but it does help me.

 

I don’t think heart failure is too likely from this description, but obviously I don’t know. Has she had an echo? My HR was hitting 180 from just walking (I am very fit) before I got it under control with metoprolol. I could not tolerate more than the 75mg I’m on, though. My HR ends up getting too low, and I have escape beats.
 

Did she have her arms raised when washing her hair? I really can’t tolerate that and it would spike my HR for sure.

[MomtoGiuliana]

7 hours ago, rtoth256 said:

after washing her hair sitting down in the shower, her average heart rate skyrocketed into the 160+ range according to what I'm seeing from Cardiogram, and stayed there for at least an hour. I don't know whether this was a sensor error, but I'm concerned.

Showering is a significant trigger for many of us.  When my POTS was severe or I am in a flare my hr can get this high basically doing "nothing".  Showering is a trigger bc the warm water causes vasodilation.  That combined with standing or even sitting and putting arms overhead is enough to trigger a big hr increase.  I used to feel so badly after showers I would have to lie down to recover for 15 min or more.  When I moved showers to night instead of morning it was easier.  At night I think we tend to be better hydrated, not sure if there are diurnal hormone shifts that also play a role.  Does she tend to feel better later in the day?

[MomtoGiuliana]

7 hours ago, rtoth256 said:

Is this characteristic of POTS? Elevated supine heart rate?

Yes definitely.  When I am in a flare my hr can be in 90s and above lying down.  

[Looking_for_light]

@rtoth256 You're among friends here - we've got your backs. We've no offline support, which inevitably makes things even tougher. 

In your wife's case, TTT was used to arrive at PoTS diagnosis - wonder if ppl here know if that definitive diagnosis rules OH out, as could be wrong, but recall that PoTS and OH don't exist in same person? 

OH doesn't fit our case. 

Hope this helps. 

 

[Looking_for_light]

Regarding ablutions, anyone with H PoTS -

do baths (no shower present) bring even more symptoms, such as extra OVERWHELMING extra fatigue and weakness, especially leg, but bring warmth to the body, esp ice cold extremities? Is this due to vasodilation?

Anyone with mcas - are baths a big trigger?! 

Thanks!  

[radiohfan23]

Been there myself. 41 male. Condition started in my late 20s, got rough, bed bound, immobile, etc. But I am vastly improved now. Here's what I've learned.

Don't forget the basics:

 - Consistent fresh air, and getting sun on her face is much more powerful than you'd believe. The body is not meant to be sedentary. Think of these things as nutrients. The more time outdoors (start slow if necessary, but don't give up, it'll likely be an uncomfortable stress at first - this can also be a nice bonding experience, evenings are a nice gentle time to get some air)

 - Try and look further than the size of a room. Seems strange, but looking at far away objects (outdoors) causes a reset of sorts and eases the stress on the nervous system from all the screens. She's likely frustrated at being subjected to the same narrow view everyday.

 - grass on bare feet may help, not sure, but worth a shot.

 

Exercise:

 - Never to strain or discomfort, but stretching, moving, I found for myself, is vital (I started with a little pedal bike in bed, then moved up to a recumbent bike

- Stretching will help circulation. I found elevating my legs will freshen the stagnant blood flow (I would do this every day for a bit - it would trigger urge to urinate, this is good, meant I was filtering stale blood). 

- I found walking is ideal

Supplementation/Meds. (Names are linked to the ones I use)

*Of course, adding exercise (stress) is not good if your wife doesn't have the constitution to endure it. Remember, exercise recovery is when one adds strength, she must have the ability to recover and for that I've found some supplements that have allowed me to do this.

- I do not take any meds. For me, what I've taken only added symptoms. Once I shifted my thinking to giving my body what it needs for me to push myself (through exercise) into recovery rather than attempting to "fix" or alleviate symptoms, I found what I needed to make massive improvements. I've gone from bed ridden to walking a mile plus at fast pace daily and I lift weights now, too. I am almost completely self reliant and live a near normal life.

 

 - This is my favorite. Sold on amazon. Only discovered it recently, but I find it gives me something I was most definitely missing. Have improved a lot in the few months I've started it.

5HTP  - Serotonin booster and importantly, a nice natural antihistamine. I take a modest dosage every night and balance it out with: Get one with b6 to aid absorption. I take this one. (only one capsule)

L-Tyrosine - Dopamine booster. Again, only take a modest amount, but it helps with motivation/drive/energy in a natural way.

Vitamin C/Quercetin.

 - I take this most nights and it helps keep me regular while holding my allergies in check.

Morning Smoothie

I mentioned allergies. I believe histamine to be a major component/cause of POTS for me. It causes major inflammation. Look up DAO, it's an enzyme that some lack, which breaks down excess histamine. Look into histamine intolerance and dietary ideas. For me eating apples helps a lot, too.

 - I sprout peas (in the dark) and add them to my morning pea protein/blueberry/kale smoothie. Pea sprouts, sprouted in the dark produce DAO and using it improves my allergies dramatically.

Auto sprouters are nice, Mine was like $20. (Just change the water daily) - I throw a small handful of pea sprouts (get the ones meant for sprouting) into each smoothie. A full batch is ready in a few days and lasts a few weeks in the fridge. A good snack as well to help if she's feeling inflammation (she'll know the feeling). 

My heart goes out to you, this condition is difficult to understand when you're not in it. And it puts a massive stress on our loved ones.

If I think of anything else I'll add it. And feel free to reach out if you need me.

Joe

[Guest KiminOrlando]

Does she actually lose consciousness? If she keeps standing will she hit the floor? If so, this could also introduce Neurocardiogenic Syncope. If not, that is relevant. 

Just for reference, I'm on 50 MG of Metoprolol ER 1x a day. They don't want to give me too much because it can cause OH. My cardiologist says prescribing that drug to POTS patients is an art, not a science. You want to control the heart rate, but not so much that it drops the BP. Not enough of that drug causes the heart to pump too fast so it doesn't have time to fill with blood, therefore pumping partially empty. Did a cardiologist write your script or is a general practitioner trying to figure this out? 

I think the fludrocortisone is really going to help. Maybe then the beta blocker will be more help.

[rtoth256]

  

9 hours ago, MomtoGiuliana said:

When I am in a flare my hr can be in 90s and above lying down. 

That's wild! This definitely hasn't been her normal behavior prior to increased... well, everything. I'm glad it's some amount of expected behavior.

9 hours ago, MomtoGiuliana said:

Does she tend to feel better later in the day?

Not entirely. I think it really depends on movement for her: I can visibly see a change in her extremities as she continues to move. Trying to think of how we can get her to move more, hopefully the fludrocortisone (which we just picked up) will help with this and dampen the impact of her symptoms.

8 hours ago, Looking_for_light said:

In your wife's case, TTT was used to arrive at PoTS diagnosis - wonder if ppl here know if that definitive diagnosis rules OH out, as could be wrong, but recall that PoTS and OH don't exist in same person? 

This is really the crux of my concern: we haven't narrowed down a subtype, but I'm starting to think she's both hypovolemic and hyperadrenergic. The good part is: we got more Metoprolol Succinate! We'll be trying the fludrocortisone first and then tapering beta blockers if we see BP improvements independent of heart rate. One step at a time...

2 hours ago, radiohfan23 said:

You're not running a marathon, you're just making the first stride. 

This is the mindset I've been adopting lately. Small wins.

1 hour ago, KiminOrlando said:

My cardiologist says prescribing that drug to POTS patients is an art, not a science. You want to control the heart rate, but not so much that it drops the BP. Not enough of that drug causes the heart to pump too fast so it doesn't have time to fill with blood, therefore pumping partially empty. Did a cardiologist write your script or is a general practitioner trying to figure this out? 

Her cardiologist, but I'm not sure his background of treating POTS patients. She currently doesn't have a primary care provider, so we're (in the words of our new case manager) "running our own ICU". I'm feeling more and more that both the blockers and the sodium (plus retention) will work, it's a matter of tuning the dosages and keeping track of vitals.

1 hour ago, KiminOrlando said:

I think the fludrocortisone is really going to help. Maybe then the beta blocker will be more help.

Definitely. We're excited to try fludrocortisone. Going to start tomorrow, and I've got low dose calcium supplements to offset the potential losses.

Her standing BP today (after standing for like, 10 minutes, and walking around/sitting in a car for a small car ride) was actually kind of impressive: 120/91, 109/86, 109/97, 110/91. Heart rates were 98, 94, 99, 110.

She took in 7g of sodium this morning and is keeping up with fluid intake. We're now doing spaced doses over at maximum 2 hours so she can mix it in with meals better. We'll more than likely dial this back tomorrow when she starts fludrocortisone, I'm interested in how fludrocortisone is mixed with high sodium intake. I don't want to induce hypernatremia or hypocalcemia/hypokalemia, so this'll be a cautious exploration of dosing.

Thank you all again for your support. She reads this thread every day to keep up. It means a lot. ♥️

Small wins.

[rtoth256]

Her blood work came back. Still trying to process what I'm reading.

• Elevated Histamine levels of 2.6ng/mL.
• Early Sjogren's Panel only shows two abnormalities.
  • CA6 IGG/IGM Antibodies are elevated beyond normal ranges.
    • 25.9 EU/mL and 34.2 EU/mL respectively.
• Low Tumor Necrosis Factor Alpha.
  • I've read that this can be a confirmed indicator of autoimmunity.
• Negative for Sjogren's Antibodies.
• Her iron is extremely low. Ferratin level was 6ng/mL.
  • ...guess I was right about supplementing iron. Making the inference from "she ate steaks, she felt better" to supplementing her with iron was the right move.
  • The question of why she's got an iron deficiency needs to be answered. We need to get her into a hematologist.
• There's no evidence for GAD65 antibody response.
  • The ELISA assay didn't show any antibody response from her high concentration of GAD65 antibodies.
  • This doesn't mean she won't develop it, just that her antibody concentrations are probably too low.
  • We need to have this re-checked.

The rest of the results need interpretation, I'm waiting for their interpretation by her autonomic doctor.

My current questions...

• How can her iron be this low?
  • Can this be a reliable cause of chronic daily headaches?
  • She had an elevated level of Methemoglobin in the ER. Can something be siphoning her iron into a form that isn't able to be oxygenated?
• Can her low iron be the secondary cause of her POTS/OH/Headache?
  • I'm doing research into this, so any help would be appreciated.
• Can the CA6 antibody results be caused by a latent COVID infection?
  • She contracted COVID on October 16th and stopped having symptoms/testing positive well before November 15th, when the blood work was taken.
  • ...She still tested COVID positive in the ER. In fact, the ER doctor noted that she's fighting some kind of infection and noted bacteria in her urine. We weren't sure if this was due to her incontinence during her syncopal episode, her cycle, or what. They were also stumped.
• Does this look like MCAS?
  • Her histamine levels are high. I have yet to establish reference levels for MCAS.
  • We haven't tested for histamine levels in urine.
• ... a slew of others that I can't express coherently.

This was a bombshell. I won't be sleeping tonight. So much to search for.

...I'm glad I sprung for the 65mg iron tablets in addition to the low-dose supplements...

She really needs to see a hematologist, and someone to assess how she's absorbing nutrients. This could all be coming from her gut.

[RecipeForDisaster]

33 minutes ago, rtoth256 said:

Her blood work came back. Still trying to process what I'm reading.

• Elevated Histamine levels of 2.6ng/mL.
• Early Sjogren's Panel only shows two abnormalities.
  • CA6 IGG/IGM Antibodies are elevated beyond normal ranges.
    • 25.9 EU/mL and 34.2 EU/mL respectively.
• Low Tumor Necrosis Factor Alpha.
  • I've read that this can be a confirmed indicator of autoimmunity.
• Negative for Sjogren's Antibodies.
• Her iron is extremely low. Ferratin level was 6ng/mL.
  • ...guess I was right about supplementing iron. Making the inference from "she ate steaks, she felt better" to supplementing her with iron was the right move.
  • The question of why she's got an iron deficiency needs to be answered. We need to get her into a hematologist.
• There's no evidence for GAD65 antibody response.
  • The ELISA assay didn't show any antibody response from her high concentration of GAD65 antibodies.
  • This doesn't mean she won't develop it, just that her antibody concentrations are probably too low.
  • We need to have this re-checked.

The rest of the results need interpretation, I'm waiting for their interpretation by her autonomic doctor.

My current questions...

• How can her iron be this low?
  • Can this be a reliable cause of chronic daily headaches?
  • She had an elevated level of Methemoglobin in the ER. Can something be siphoning her iron into a form that isn't able to be oxygenated?
• Can her low iron be the secondary cause of her POTS/OH/Headache?
  • I'm doing research into this, so any help would be appreciated.
• Can the CA6 antibody results be caused by a latent COVID infection?
  • She contracted COVID on October 16th and stopped having symptoms/testing positive well before November 15th, when the blood work was taken.
  • ...She still tested COVID positive in the ER. In fact, the ER doctor noted that she's fighting some kind of infection and noted bacteria in her urine. We weren't sure if this was due to her incontinence during her syncopal episode, her cycle, or what. They were also stumped.
• Does this look like MCAS?
  • Her histamine levels are high. I have yet to establish reference levels for MCAS.
  • We haven't tested for histamine levels in urine.
• ... a slew of others that I can't express coherently.

This was a bombshell. I won't be sleeping tonight. So much to search for.

...I'm glad I sprung for the 65mg iron tablets in addition to the low-dose supplements...

She really needs to see a hematologist, and someone to assess how she's absorbing nutrients. This could all be coming from her gut.

My ferritin was also 6. It’s not always easy to absorb iron you eat, especially without acid, and you can’t absorb a ton of it at once. Seeing a hematologist is a great idea. I had to get IV iron infusions and now maintain (I hope) with iron polysaccharide with vitamin C added - ferrous sulfate can be hard to tolerate if you take it on an empty stomach, which works better…. I tolerated it but it didn’t help me enough. My absorption is not great across the board and we don’t know why. I’m low in almost everything, and I’m probably thinner than I should be. It’s not celiac. Plus, if she’s premenopausal, she’s losing -some- blood. 
 

Tryptase in blood/urine is usually tested for MCAS. Sometimes a 24 hour urine collection is done.

[rtoth256]

9 minutes ago, RecipeForDisaster said:

Tryptase in blood/urine is usually tested for MCAS.

Her Tryptase blood level was 3.5mcg/L, so I'm not sure if this is indicative of MCAS.

12 minutes ago, RecipeForDisaster said:

I had to get IV iron infusions and now maintain (I hope) with iron polysaccharide with vitamin C added - ferrous sulfate can be hard to tolerate if you take it on an empty stomach, which works better…. I tolerated it but it didn’t help me enough. My absorption is not great across the board and we don’t know why. I’m low in almost everything, and I’m probably thinner than I should be. It’s not celiac. Plus, if she’s premenopausal, she’s losing -some- blood. 

How intense/debilitating were your symptoms before you started upping your iron via infusions/oral supplements?

[MikeO]

1 hour ago, rtoth256 said:

Does this look like MCAS?

This video from UW Wisconsin explains MCAS pretty well.

 

[RecipeForDisaster]

8 hours ago, rtoth256 said:

Her Tryptase blood level was 3.5mcg/L, so I'm not sure if this is indicative of MCAS.

How intense/debilitating were your symptoms before you started upping your iron via infusions/oral supplements?

When they were working me up for MCAS (I don’t think I have it), they did a 24 hour urine tryptase and had me try to trigger symptoms as much as I could that day.

Well, I’m pretty sick, so stuff like always being cold, pale, and exhausted were tough to pin on the iron. We tried oral supplements for a long time (more than a year?), without much improvement, before going IV. I’m not sure I’m much better, but I keep getting worse overall, so it’s hard to say. I always wonder if I would have gotten worse quicker if not for this or that.   But I do not feel better, and there is so much going on, that the waters are very muddy.