SpinachHands
Senior Member
- Messages
- 144
- Location
- United Kingdom
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!
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!