rtoth256

Findings from today... Vitamin D levels are back to normal. Optimal levels. Vitamin B12 levels are near the top of the range. Iron still needs some time to work, but iron saturation seems better (Ferritin wasn't checked, but our new Hematologist should check it). Renin and Aldosterone levels were checked, but we don't have results yet. Praying for a negative result... This'd fit so much. Tomorrow, we try Fludrocortisone. Please work. Please.

A lot of the problem is that the left hand isn't talking to the right hand, left foot to right foot, left hemisphere to right hemisphere, etc. Our team of "experts" is from a limited class of doctors from a primary care clinic that does not specialize or even deal with multi-focal problems like hers. Her endocrinologist hasn't given her a full endocrine workup, which I want. Her cardiologist hasn't done a standing echo or stress test, or a full cardiac workup (he's also unresponsive). Her neurologist totally bailed on us claiming that "it's a functional disorder" (keywords: "all in your head"). Her rheumatologist screened her for lupus, then bailed on us. Our autonomic physician is unresponsive for weeks. Everybody's pointing to "the experts": our doctors cannot help us. We need a team of specialists that communicate with each-other. Her case manager is pursuing admittance to the Cleveland Clinic and Mayo Arizona. Provided she can travel or do telemedicine, I imagine that will provide more fruitful results. Much of what I read here tells me that this is a common problem among sufferers of chronic illness: that there isn't a team of people overseeing your care and giving you the (to quote Dr. Blair Grubb) "million dollar work-up". We're not even sure if she's diabetic anymore, her honeymoon period should have ended months ago. This is the rut we will, more than likely, be stuck in until we can get to a team of specialists to take her case. Until then, ruling out the easily treatable causes of this is all I can do.

I've spent most of the morning chasing down vitamins and minerals, and have come to the realization that she hasn't had a full vitamin panel yet. I'm going to ask her endocrinologist to order one today, we have a pre-existing appointment. Her Vitamin D level (25OH) the day her symptoms started was 16.0 ng/mL. That's in the range of "insufficient" (vs. "deficiency") for the clinical lab, but it's below the "sufficient" level. This, combined with her iron panel shows me we need to be tackling this more aggressively. She has been supplementing with 2000 units/day since July 13th, so if she doesn't show elevated Vitamin D, we may have some clue. I'm also tracing down other possible causes. She had a lot of meat on the nights before the 13th and 14th, and she showed some improvement in vitals when fed large amounts of red meat, but not on iron supplements. Breaking that down, that may point to a Thiamine deficiency. All of this started about a month and a half after dietary changes due to her diabetes... I'm wondering what we got rid of that was keeping her alive.

Definitely not. We'll ask for a referral!

Will do, I'm curious if this is commonplace. In the past, she's had much slower drip rates: sometimes 2 liters over 2 hours, sometimes less, sometimes more. No symptom improvement. Not sure what an EP is, can you clarify? She's been to the emergency room several times. We have a referral to Hematology and I'm looking to get her iron levels checked at the end of the week. Her heart rate is still high during her sleep (85-90s), but she isn't tachycardic anymore. Still piecing this all together.. I still have yet to trial H1/H2 blockers. I think those might be a bit safer than beta blockers in the short term. If the elevated histamine is the problem, it sounds loosely like something MCAS related? Worth a shot. Benadryl doesn't do a thing, so it might be H2 and GI related... Will get a referral to a GI doc. Something I've been fixating on lately: she has incredibly dark circles under and over her eyes these days. Like, really dark. Comparing to older photos, this is definitely a symptom. They don't get better with rest. Maybe she's not actually absorbing her supplements..?

I'm also wondering what her Plasma Histamine level is now.. They never measured it. I'll have her new PCP check it on Friday.

What a day. So, for starters.. she couldn't sleep. Like, at all. Kept jerking, tossing and turning. So, I stayed up through the night with her until the clinic opened in the morning: I was determined to get her iron sucrose. After reviewing her heart rate data... something struck me as a little frightening: her resting heart rate is slowly rising by the day. By a lot. From 72 on the 28th, to 79 on the 30th, to 80 on the 1st, to 81 on the 3rd, 82 on the 4th, and finally 88 today, the 5th. We went to the clinic to have them run a full iron panel, CBC and CMP. Some notes: Her Serum Iron is 50ug/dL. Her Iron Binding Capacity is 501 ug/dL Her Percent Saturation is 10% (presuming this means iron saturation). Her Serum Transferrin is 358mg/dL. Her white blood cell count is 9.2 K/uL, which is on the high end of normal. Her red blood cell count is 4.75 M/uL, which is middle of the road. Her Hemoglobin is 12.5 g/dL. Her Hematocrit is 37.8%. Her MCH is 26.4pg, which is about 0.6pg below the floor for "low". Her MCV is 79.5pg. Same thing, 0.5pg below the floor for "low". Her RDW is 13%. All day, she was tachycardic: laying down, sitting, walking. Her heart rate rarely if ever dropped below 100 regardless of what she was doing. I don't understand this. The clinic saw her and pumped 1.25L of saline through her. After the first liter didn't do anything, she decided to stop the second a quarter of the way through. The doctor didn't diagnose her with being anemic, but did diagnose her with an iron deficiency, noting that iron deficiency alone "couldn't cause her symptoms". I had my doubts, so I took her to the ER for an iron sucrose infusion. She had the infusion, being tachycardic the whole time, and showed no improvement. I have yet to take standing BP or any vitals since we left the ER, as we both essentially passed out after being awake for over 24 hours. Before, during and after infusions of saline and iron sucrose, she's been tachycardic. Significantly tachycardic. Like, a max heart rate of 160 tachycardic. I'm worried about why she's responding to iron like this: the resting heart rate increases line up with increased iron supplementation (65mg). Is this "get worse before you get better" pattern normal for those with iron deficiency and getting treatment, or have we kicked off a process that shows another underlying problem? She doesn't kick when sleeping or trying to sleep anymore, and fell asleep within minutes, though I'm not sure if that's exhaustion or the iron doing its thing. Very confusing.. I do not want to start her on any new medication to control her heart rate without at least having a plausible explanation why it's so high.

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?

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.

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

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.

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

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.

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.

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.