Thanks to a very kind collaborator, i have some copeptin (marker of AVP) data, compared to my pre-vaccine measures👇🏻👇🏻👇🏻
Whilst not all samples were taken in ideal conditions, it is clear something funky is (or was) going on with my AVP. some thoughts🧵 #postvac#LongCovid#POTS
1. What i find MOST interesting is that under the most controlled conditions (9am, no fluid), my copeptin was much lower than pre-vaccine on the same day my cortisol came back much lower than pre-vaccine
I then had a synacthen test which came back normal about 6 weeks later. this was confusing. I had just come off clopidogrel and was relapsing *HARD*.
Hypothesis 1: relapse = stress = higher cortisol
This is an expected response to illness
Buuuut, between my low cortisol measure in August, and my synacthen test in October, we started me on salt because we learnt i wasn't producing detectable levels of aldosterone (which helps you retain salt). in essence, i was peeing out all the salt i consumed
So at my synacthen test, i had had my morning slow sodium, 2.4 g NaCl.
Hypothesis 2: salt intake was a sufficient stimulus to produce AVP = ACTH = higher cortisol
(both hypotheses could be correct ofc)
2. AVP is quite sensitive. Even the taste of water has been reported to reduce it. A bolus of fluid can lower AVP for several hours. This is why i put the time, salt, and fluid intake on the graph, along with a roughly equivalent measure from pre-vaccine pubmed.ncbi.nlm.nih.gov/29242971/
What we can see is that from the measures taken, regardless of the time, food, or fluid intake, prior to the synacthen test my copeptin was about the same as my pre-vaccine measure after a normal day (with food and fluid)
in other words, my copeptin was abnormally low. Essentially, my generally low salt diet wasn't enough of an osmotic stimulus to boost AVP.
Whether there's a pathological side of it is unclear.
3. My most recent measure was an odd one. it was semi-controlled since i had not eaten or drunk anything (except a sip to take meds), but it was also quite late in the day. my copeptin came back quite high. levels you can see in e.g. diabetes, cardiovascular disease (if chronic)
This suggests my AVP *is* responding to osmotic stimuli as it should.
Has whatever malfunction been fixed? Was the fix as simple as salt, or was there co-pathology? i don't know.
4. Most of last year/early this year, i suffered with varying levels of excessive thirst
If you read most thirst literature, it will say or hint at high AVP being a key trigger to thirst. im less convinced
explained here: hydrationforhealth.com/en/hydration-s…
and here:
2. Cholinergic dysregulation: the cholinergic system regulates thirst, saliva, and drinking behaviours (see my talk/paper linked above). I am currently experimenting with choline:
3. Neurological inflammation/damage: thirst is regulated in the brain. I have MCAS (potential neuroinflammation), platelet activation, clotting, etc. these can all cause chaos in the brain.
what is FASCINATING is that shortly after my blood test in March 2023...
i was finally put on steroids to help the relapse. Since then, my thirst has normalised. im even having to *remember* to drink to help POTS. did steroids dampen neuroinflammation?
We can infer from my Oct 2022 (synacthen test) & March 2023 copeptin that my AVP is working again
so it is (a) normal, (b) responsive to osmotic challenges
Yet my thirst is LOWER than when my AVP was abnormally low
This suggests that even if my model of thirst isnt entirely correct, the premise that thirst is (unsurprisingly) more complex than AVP & osmolality IS correct
Anyway, there's some off the cuff, slightly jumbled thoughts... i didn't go into interactions with RAAS or other meds either. its complex!
@DeansKevin has some ideas about my thyroid, i will see if i can collate my thyroid data and correlate it to copeptin
but to summarise, my HPA axis definitely had something funky going on. it was acting distinctly different compared to pre-vaccine, and this is supported by cortisol measures.
except the living it, i do find it cool being part of my own hydration experiment. if you watch the talk i did linked above, that was during my initial "recovery" from the vac. you can see me fighting brain fog & i had to keep lying down when recording as i felt so sick & dizzy..
....the signs of POTS were there & i was completely oblivious. the irony of this illness is amazing:
1. research vaccine effectiveness: get vaccine injured 2. research hydration: vaccine dysregulates my AVP, aldosterone 3. research appetite: vaccine causes my appetite to wild
🙃
Pilot Findings on SARS-CoV-2 Vaccine-Induced Pituitary Diseases: A Mini Review from Diagnosis to Pathophysiology ncbi.nlm.nih.gov/pmc/articles/P…
Paper discusses cases of pituitary dysfunction post-vaccine (and COVID)
this includes things like diabetes insipidus which many of us have symptoms of, as well as other common symptoms like weakness and headaches...sounds familiar!
authors highlight how non-specific these symptoms are so are easily dismissed and not investigated
there's a lot of nuance in the paper about the cases they discussed so it's unclear how well this translates to cases like mine, but they discuss inflammation, endothelial dysfunction, and ischaemia as likely causes
depending on the problem, patients were treated with desmopressin (AVP analogue) and/or steroids.
for those with hypophysitis, steroids seemed to help. this is interesting to me, since my thirst has been fixed since (low dose) steroids...
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I dont think #POTS experts realise how all-consuming the first line treatments can be:
🚰Drink loads of water...that you can't retain because part of POTS is water-retaining endocrine dysfunction (and going to toilet every 30 minutes with orthostatic intolerance is a breeze 🙄)
🧦Wear compression garments...which are ridiculously hard to put on (especially in those with energy limiting comorbidities like ME), and are incredibly uncomfortable, especially in the heat when you need them most
🪑Be upright as much as possible...even though your literal issue is being upright. And sleeping propped upright is of course super comfortable 🫠
COVID-19 vaccines and adverse events of special interest: A multinational Global Vaccine Data Network (GVDN) cohort study of 99 million vaccinated individuals
Summary of key findings:
- Patients often had a high symptom burden
- Most tests came back normal, especially for mRNA recipients
- #MCAS and #POTS targeted therapies generally seemed most effective with few side effects
- Experience of healthcare was poor
We also ran some cluster analyses to see if we could identify patients with similar symptoms and link these to other things like test results. Unfortunately we did not find any notable clusters; possibly because the sample is too small, and/or because the disease is heterogeneous
When i was employed by @NHSGrampian i wrote a generic letter to your doctor about key things to look for in #longcovid/#postvac:
The aim was to give drs some direction based on emerging evidence as the NHS has offered nothing helpful in terms of guidance dontbelievehype.co.uk/covid-%26-vacc…
I was told to remove any reference that i worked in the NHS which i had initially written in the letter.
The NHS didnt want any association with *checks notes* evidence. It was deemed "too risky".
Its almost like they had an expert employed and deliberately chose not to listen and act accordingly... And now theyre being sued for negligence. I feel like this might have been avoidable, especially so in Grampian's case...
If we look a bit closer at the results, it does look like a subgroup of IVIG patients get distinctively better (> 20 % improvement), and other get a bit or significantly worse.
From this, I surmise that we could maybe predict most will experience light improvement with albumin, but the outcome is less predictable with IVIG, though favouring improvement to some extent.
Fatigue and tiredness are different. Simple way to show this:
First generation antihistamines block histamine action in the brain. Histamines are a wakefulness molecule. Hence a side effect is drowsiness and tiredness.
But these drugs can also significantly relieve fatigue.
If fatigue was a form of tiredness, this would be unlikely to happen, especially considering the other mechanisms of action with first gen antihistamines which are not conducive to wakefulness
This suggests at least for some people with fatigue, their fatigue is caused by excess histamine. This may also explain the (poorly named) "wired & tired" feeling many patients experience. Histamine is keeping them awake ("wired") whilst *also* triggering fatigue ("tired")