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

[supertired]

This case seems really complicated. I agree with a previous poster that you really ought to get to one of the good specialty/diagnostic centers.

If I had to venture a guess, I would say your wife’s POTS is not primary, but secondary to something else… perhaps an autoimmune condition. Every person is a little bit different, but the autonomic symptoms you describe seem a little weird… there seems to be something autonomic happening… but it would be great if you could figure out why. With some blood tests showing that some of the autoimmune markers are popping, plus the previous mention of an MRI result showing some kind of vasculitis, I would maybe look in that direction. The autoimmune conditions are pretty ill-defined, really, so seek the advice of a rheumatologist… they may be able to shed some light. If your wife had Covid and/or any other type of infection, that kind of underlying condition could definitely make things worse for a good long while after. Plus, a vasculitis type condition could explain the ever present headaches.

Just a suggestion… add a rheumatologist to your ever expanding list of specialists, plus make sure you’re getting thoroughly worked up by cardiology… ask for a proper ultrasound, a bubble test, and maybe a Level 3 CPET… the heart symptoms to me are most immediately of concern (and life threatening) if someone missed something before they started prescribing all these meds you’ve listed so far. (I didn’t see any mention of a cardiac workup, other than the Holter type monitor?)

Also, as people on here will tell you, this is a marathon… it really takes a while to evaluate how a med will affect you. So don’t run through them too fast trying to evaluate so quickly. Start low, go slow… as they say. Plus, we all have good days and bad days, good hours and bad hours. They don’t always exactly correlate with much. (As a systems person/engineer you’re going to want to think that… but it doesn’t always work that way!)

Just my two cents… (I feel the need for a disclaimer… this isn’t medical advice, seek the advice of your physician, etc., etc.) The trying to get the correct diagnosis phase of all of this is the worsssssssst… I know you’re feeling exasperated. Keep at it, keep on top of it. See all the specialists you think might be related - you never quite know which one may have the breakthrough help for you. Hugs to you both.

[Pistol]

@rtoth256in the fall of 2021 I was hospitalized with respiratory failure from COVID pneumonia. While in the hospital they started me on steroids and after a week I was discharged. A week later I developed a high fever, swollen and painful ankles. Went to the rheumatologist and all my inflammatory markers were extremely elevated. Then I developed red pinpoint dots all over my legs. Turned out I also had developed sepsis and the extreme stress on my immune system had cause reactive arthritis and immuneresponse vasculitis. After another week of hopitalization and two weeks of home IV antibiotics I was as good as new. During this time I was placed on steroids a few times and the symptoms improved while on it but only masked the inflammatory response. 

I am mentioning this because even the rheumatologist could not understand why my markers kept going up while I was on the steroids until they found the sepsis. So, theoretically ANY underlying infection can cause a severe reaction like your wife's - but infections are not necessarily easy to pinpoint. They consulted an infectious specialist in my case. I hope they will get to the bottom of this. In my case I went to my good old "only POTS" self, so keep up hope!

[RecipeForDisaster]

Oh, regarding the iron, I wanted to say that you still need to get the ferritin fixed, even if it doesn’t help symptoms or if you don’t feel symptoms from it being low, because it will definitely come back to bite you down the road if you leave it that low. I did get a little anemic from it, and that is definitely not good for someone with hypovolemia. I’m very glad I did the infusions and got my levels up. I always say, I don’t need another reason to do poorly!

 

My other half has a low ferritin now, because he does double red cell donations as often as he can. Unfortunately, I think he will have to stop those. He’s been taking my good iron for a long time.

[rtoth256]

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.

[rtoth256]

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.

[Pistol]

@rtoth256 most people respond poorly to iron infusions in the beginning. The most noticeable benefit from them usually is an increase in energy, but often the benefits are not noticeable for a while. There are posts about other members here that had iron infusions and reported their responses, you may want to search our archives?

[RecipeForDisaster]

1 hour ago, Pistol said:

@rtoth256 most people respond poorly to iron infusions in the beginning. The most noticeable benefit from them usually is an increase in energy, but often the benefits are not noticeable for a while. There are posts about other members here that had iron infusions and reported their responses, you may want to search our archives?

Yes, actually, IV iron can be very hard on you. I didn’t have much trouble with it, but it seems most people do. It also would not help too quickly if it was going to. It’s a bummer the saline didn’t help, but I’m guessing it was run too fast - if I get a liter quickly, I don’t feel better, either. 

[MomtoGiuliana]

You said you don't want to start a medication to control her hr without first understanding why it is so high.  I haven't followed all of your posts--has she been seen by an EP?  

I agree w above that IV saline is more valuable when administered slowly, in my experience.  Usually tho (with POTS) it should provide some improvement in symptoms even if small and temporary.  (Might still feel poorly but maybe not quite as poorly.)

[rtoth256]

10 hours ago, Pistol said:

There are posts about other members here that had iron infusions and reported their responses, you may want to search our archives?

Will do, I'm curious if this is commonplace.

9 hours ago, RecipeForDisaster said:

It’s a bummer the saline didn’t help, but I’m guessing it was run too fast - if I get a liter quickly, I don’t feel better, either. 

In the past, she's had much slower drip rates: sometimes 2 liters over 2 hours, sometimes less, sometimes more. No symptom improvement.

3 hours ago, MomtoGiuliana said:

You said you don't want to start a medication to control her hr without first understanding why it is so high.  I haven't followed all of your posts--has she been seen by an EP?  

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..?

[MomtoGiuliana]

27 minutes ago, rtoth256 said:

Not sure what an EP is, can you clarify? She's been to the emergency room several times.

Electrophysiologist.  This is a cardiologist who specializes in heart rhythm abnormalities.  They often diagnose and treat POTS and other forms of dysautonomia.

[rtoth256]

1 minute ago, MomtoGiuliana said:

Electrophysiologist

Definitely not. We'll ask for a referral!

[Pistol]

3 hours ago, rtoth256 said:

In the past, she's had much slower drip rates: sometimes 2 liters over 2 hours, sometimes less, sometimes more. No symptom improvement.

Well, that is really fast! Usually - in my experience - IV fluids for POTS should be infused AT LEAST at 1 liter over 4 hours. Anything faster goes right through. I have received boluses ( very fast ) in ER and had minimal effect. When infused slowly I perk right up and the results last several days, if not longer ( for me they reset the ANS ). I now received infusions over a half a day twice a week and am better controlled then ever!

[RecipeForDisaster]

15 hours ago, Pistol said:

Well, that is really fast! Usually - in my experience - IV fluids for POTS should be infused AT LEAST at 1 liter over 4 hours. Anything faster goes right through. I have received boluses ( very fast ) in ER and had minimal effect. When infused slowly I perk right up and the results last several days, if not longer ( for me they reset the ANS ). I now received infusions over a half a day twice a week and am better controlled then ever!

Yes - I’m getting my fluids now and each liter will be run over nine hours! It makes a huge difference for me. An hour or two for a liter would not help me much if at all.

[MikeO]

@rtoth256Sorry that your wife is having so many problems. My only advice i can give is to be careful as to self diagnosing and medicating (this can go bad) especially if one is flying blind. Like you i have one point was convinced that i had MCAS and was about to pull the trigger with the usual benadryl and H1/H2 meds. I am glad i did not. MCAS is a bit of a shoot to diagnose (more than just a simple one time blood test).

What has helped me with my health care providers is to write down on paper symptoms, concerns, what had worked and what has not, questions (like your beta-blocker concern). I have found that when the Dr sees the list i get a different tone with them as well.

As a note it has taken me two years to get where i am today. I did have to prioritize what was needed to worked on. In the past there were so many changes made we never knew what worked and what did not. so we have targeted one thing at a time and has helped me greatly.

Best of Luck

[RecipeForDisaster]

4 hours ago, MikeO said:

@rtoth256Sorry that your wife is having so many problems. My only advice i can give is to be careful as to self diagnosing and medicating (this can go bad) especially if one is flying blind. Like you i have one point was convinced that i had MCAS and was about to pull the trigger with the usual benadryl and H1/H2 meds. I am glad i did not. MCAS is a bit of a shoot to diagnose (more than just a simple one time blood test).

What has helped me with my health care providers is to write down on paper symptoms, concerns, what had worked and what has not, questions (like your beta-blocker concern). I have found that when the Dr sees the list i get a different tone with them as well.

As a note it has taken me two years to get where i am today. I did have to prioritize what was needed to worked on. In the past there were so many changes made we never knew what worked and what did not. so we have targeted one thing at a time and has helped me greatly.

Best of Luck

Great advice. I’m more than a decade in, and since I have gotten worse, with more illnesses joining in over the years, it’s gotten muddier. I’m on so many types of therapeutics and see a lot of different specialists. I do know what helps, and that I’d be much worse off without these tools.

One thing I did with my doctor list is to emphasize and prioritize things on the list, so they would know if it was just something I was mentioning in case it was a clue, OR something I really needed help with. I always try to go into an appt with 3 or fewer "big ticket" items - stuff I desperately needed solved, tests I needed ordered, etc.

[rtoth256]

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.

[MikeO]

21 hours ago, RecipeForDisaster said:

I always try to go into an appt with 3 or fewer "big ticket" items - stuff I desperately needed solved, tests I needed ordered, etc.

I have been doing the same. What i have learned over the years is not to overwhelm your Doc. Have had the lets put you on the anxiety meds talk. My latest complaints was to focus on my hip pain and food issues and GI woes. What has so far came out of the food portion is i have postprandial hypotension, Some food intolerance (no night shades or acidic foods) GI did improve and a new diagnosis of diabetes (sucks). I know i still have more to go but is some progress. 

[MikeO]

2 minutes ago, rtoth256 said:

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.

Here is my vitamin D blood test and yes i was low. But saying this it is not abnormal at times of a year. Sure that is why milk includes vitamin D. I do take 2000 units of D.

 

[MomtoGiuliana]

1 hour ago, rtoth256 said:

she showed some improvement in vitals when fed large amounts of red meat

Some of us see immediate symptom improvement on a very low carb/low glycemic diet.  I know when I was initially very unwell my dr recommended small meals, plenty of fluids with the meal and foods on low glycemic index.  This seems to reduce problems with tachycardia and fatigue and other symptoms after eating, for me.  I would suggest tho that whatever is wrong, there may not be one answer unfortunately.  I hope her general practitioner and endocrinologist can help soon to determine what tests should be done and other specialists seen.  I agree with what others have said here too about communication with doctors.  This is a practiced art in itself and very challenging when undiagnosed and experiencing so many symptoms.  It's helpful to prioritize the most troublesome problems and to laser focus on those.  In my experience, I have heard doctors say things like "if everything is wrong, nothing is", throw up their hands and offer anti-depressant.  

Keeping a diary of symptoms and diet and other factors is definitely helpful as her doctors sort through this.

[rtoth256]

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.

[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.

[DysautonomiaWarrior]

Sometimes serum levels of some vitamins do not reflect whole body stores. B12 is an example. I was low normal on B12 but PCP and I decided on subq cyanocobalamin.  Certain supplements can be destroyed by gut acid, but injections or sublingual are not affected. They produced excruciating foot neuropathy for me. A little known cause I learned with my work with interferon was bone marrow suppression. It just wasn’t putting out enough red cells causing anemia, a known cause of dysautonomia. We would put them on epogen subq for the duration of treatment. Anemia can have many causes, some you don’t expect or even know about. I have Gilbert’s disease where I’m missing the enzyme glucuronyl transferase which breaks down bilirubin, one of the products of red cell degradation and bilirubin builds up in the blood causing anemia. I was always borderline low on all red cell parameters and then 2 hip replacements and the bottom fell out. Transfusion city and systemic inflammatory response syndrome requiring transfusions. And I guess I have a real chip on my shoulder and don’t trust docs further than I can throw ‘em. That’s why I had to diagnose myself mostly.