Upcoming blood tests for dysautonomia- what should I make sure is included?

[SpinachHands]

My partner recently had an appointment with Dr Claire Taylor, a private Long COVID/dysautonomia specialist in the UK, and she's sending through recommendations for blood tests to our GP. She said about testing morning cortisol levels, and a 24hr urine collection for adrenal issues, I assume the general vitamin and iron levels will be included too. I don't know what else is included in the recommendation from the doctor until her letter arrives, but want to make sure I'm not missing anything off. I also asked that the GP to add testing thyroid function (she said it "probably wasn't necessary" since "we tested it last year and it was fine" but I'm insisting since the dysautonomia started after that last test.)

In general, we're not sure if it's POTS, MCAS, and/or something else. They fluctuate between parasympathetic and sympathetic over-activity, so either fatigue to the point of paralysis combined with muscle weakness, stomach churning, low BP and hr, or a massive rush of adrenaline, panic, muscle tension, increased heart rate and temperature. They can feel it's very distinct from their ME symptoms, and actually their ME has been improving over the past few months underneath this, but the dysautonomia is preventing any kind of pacing or recovery, as it flares up unpredictably and can last for hours or days, and is fully debilitating.

In terms of treatment already tried, Dr Taylor prescribed fludrocortisone, famotidine, and ketotifen to try and treat this autonomic dysfunction. The first two massively worsened symptoms and had to be stopped after only a few days. My partner's stayed on the ketotifen for a month now but isn't really noticing any benefit, and does still get a slight symptom flare up after taking it. Their GP tried them on Mirtazapine when the dysautonomia first started, but that left them with a HR of 120 for a 10 hour panic attack. The dysautonomia only started after taking LDN for a few weeks back in Feb, and has been pretty consistent and unabating since.

Long story short, is there anything else I should make sure is being checked in the blood tests that could give us an indication of what could be causing this severe dysautonomia? Just something to give us a direction with what treatment to try next. Thanks!

 

[linusbert]

i definitely would check all electrolytes, thats at least 6,
vitamin D levels.

maybe also b12 by doing methylmalonic acid.

maybe also for checking thiamin status:

Erythrocyte Transketolase Activity (ETKA)





i wonder, does your partner complain about plastics or smell of plastics btw? or unusual smells nobody else is noticing? your partner might be reacting to chemicals in plastic then. those are everywhere. and can trigger mcas and allergy problems.

 

[wabi-sabi]

I would agree it's probably not the thyroid. When you say "fatigue" thyroid is the first thing doctors think of, so that problem tends to get crossed off the list early on. Drawing out blood is hard on us, so you want to avoid unnecessary tests. I vote yes to the iron panel.. That's not always so common a test, so might not have been done before. If you partner is vitamin deficient, you would hope someone has noticed before it got this bad, but you never know. The amount of supplements people take, this seems unlikely, but it depends how well she is able to eat.

If there are tests for MCAS, that might be useful. Prescribing famotidine and ketotifen both imply the doc thinks there's some MCAS involved.

The best tests for dysautonomia I know are the tilt table test or the NASA 10 minute lean test. Interpreting these will tell you something about the type of dysautonomia.

The Dysautonomia International website is a useful resource:
https://www.dysautonomiainternational.org/

 

[Zebra]

Long story short, is there anything else I should make sure is being checked in the blood tests that could give us an indication of what could be causing this severe dysautonomia? Just something to give us a direction with what treatment to try next. Thanks!

I don't think that there are routine blood tests to diagnose what is causing the dysautonomia.

Way back, when I was evaluated at a major dysautonomia clinic (after the full battery of physical tests/exams for dysautonomia), the doctor did send my blood to the Mayo Clinic for autoimmune and/or paraneoplastic conditions that can cause dysautonomia.

Here's a link to the blood test panel:

https://www.mayocliniclabs.com/test-catalog/overview/92121

Maybe they have something similar in the UK?

 

[SpinachHands]

The best tests for dysautonomia I know are the tilt table test or the NASA 10 minute lean test. Interpreting these will tell you something about the type of dysautonomia.

Way back, when I was evaluated at a major dysautonomia clinic (after the full battery of physical tests/exams for dysautonomia), the doctor did send my blood to the Mayo Clinic for autoimmune and/or paraneoplastic conditions that can cause dysautonomia.

Unfortunately my partner is fully bedbound, so would be unable to withstand any physical tests like this. They can't even sit up for a very basic POTS hr/BP test. Their private doc, Dr Claire Taylor, was willing to diagnose POTS based on their symptoms history, and thinks thinks like tilt table tests are often unreliable, and that trying treatment is a good way to see if that was the issue (which I back massively). We think potentially my partner may have actually had POTS since childhood, but there's something else going on with their nervous system on top of that too that only started this year.

 

[linusbert]

We think potentially my partner may have actually had POTS since childhood, but there's something else going on with their nervous system on top of that too that only started this year.

since this year the plastic industry switched materials. i notice this that i am allergic to new plastic devices. where as i wasnt to the exact same device of previous year. i noticed when sending in a broken robot vaccum and got the same model but newer manufacturing as replacement.
i can smell it, its annoying and very intrusive. but seamingly not everyone can smell it. and its everywhere, bible, electric devices, glas boxes for food (the seal) etc. i bought a washing machine and had to return it.
even the water pipes (or boiler) in my new house build last year has a distinct plastic smell especially in hot water. sometimes i am reacting with allergy symptoms when showering.
when i handwashed my cloth with the warm water from the tap it had that smell.. i use cold water now and in a tea cooker that made that cold water boiled. i did not get that smell anymore on my cloth. and i am talking germany here, we have very good and clean water, actually.
i would try to check if this is contributing to the suffering, get rid of any plastics, plastic bottles, packaging, devices etc. buy organic alternatives if possible. get products in glas like yoghurts in glas instead of plastic. water in glas bottles. toothbrush with wood. toothpaste without microplastics at all.. maybe try coconut oil instead.

 

[wabi-sabi]

They can't even sit up for a very basic POTS hr/BP test.

That's a tough place to be. I hope the blood tests turn up something useful.

 

[Violeta]

If you can find a doctor that would prescribe a test for catecholamines, getting tested for neurotransmitters might help.

norepinephrine, dopamine, adrenaline, serotonin and acetylcholine,

You can look it up and see what you think.

Also, looking for B vitamin deficiencies.
Especially thiamine.

https://hormonesmatter.com/thiamine-connection-pots-wernickes-everything-in-between/