Author Topic: Iwillbeatthis treatment and case diary  (Read 1555 times)

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #45 on: May 11, 2021, 07:45:48 AM »

My endo says one adrenal gland is producing way too much aldosterone. She prescribed something similar to (but not the same as) spironalactone.

If I were younger, doc would recommend surgery to remove adrenal gland.

Evidence points towards I also have aldosterone issues:

CYP1A2 homozygous mutation - consequences I have 5% activity compared to the wild type version - This gene is important for aldosterone and cortisol synthesis.

Curcumin causes me big issues and that inhibits this enzyme

Wake up some mornings with bad kidney pain, dilated pupils, speech issues, weak urine flow. Things like SAM E make it a lot worse.

Low potassium and sodium in hair , Low sodium in urine , funny because I have a high salt diet....

Kidney beef (glandular extract) helps stregthen the kidneys seems to stop my kidney pain.

Quote from Amy Yasko:

"Mutations can occur that affect the activity of the ACE (angiotensin
converting enzyme). Up regulations in activity of this enzyme lead to
higher than expected conversion of angiotensin I to angiotensin II. High
levels of angiotensin II in turn increase the level of aldosterone. High
levels of aldosterone lead to decreased excretion of sodium in the urine
and increased excretion of potassium in the urine. This suggests that low
sodium and high potassium on a urine essential element test may reflect
aldosterone excess and may indicate ACE up regulations. In animal studies
high levels of angiotensin II were correlated with increased anxiety and
decreases in learning and memory.

Support for ACE mutations in this pathway can include Kidney Support RNA,
OraKidney, OraAdrenal, Stress and Anxiety Support RNA. BioNativus
multiminerals can be used for a general mineral support.

Aldosterone can also be regarded as a stress hormone as its levels are
elevated in the blood following stressful situations. Consequently, even
in the absence of an ACE upregulation, situations of chronic stress can
result in increased levels of aldosterone causing sodium retention and
increased potassium excretion. This excess potassium is excreted provided
that the kidneys are functioning properly. In the event that kidney
function is compromised, it can lead to the retention of potassium in the
body.

While the initial effect of increased aldosterone is the retention of
sodium and increased secretion of potassium, over time, as the adrenals
become fatigued and unable to release adequate amounts of aldosterone
and/or cortisol the levels of potassium start to rise and sodium levels
may begin to fall in the body. When this occurs it can result in increased
retention of potassium.

In cases of imbalances in sodium and potassium excretion it is worthwhile
to consider adrenal and kidney support. Also reducing stress is helpful as
aldosterone is basically acting like a stress hormone.

General support for the adrenals and kidneys in the absence of specific
ACE mutations includes OraKidney, OraAdrenal, Stress and Kidney Support
RNA.

On a related note, licorice is often used for a number of healing
purposes. It should be recognized, however, that licorice inhibits
enzymes that break down aldosterone and cortisol and so its use may be non
ideal for those with imbalances in these regions. The use of licorice can
lead to increased levels of aldosterone. Licorice can also cause an
increased craving for salt, loss of potassium and increased water intake.
This may be related to its inhibition of the enzyme11 beta hydroxysteroid
dehydrogenase. Grapefruit juice also inhibits the activity of this enzyme.

Phosphatidyl serine is reported to help to control excess cortisol in the
body in addition to its role in the back door synthesis of methionine."



demografx

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Re: Iwillbeatthis treatment and case diary
« Reply #46 on: May 13, 2021, 09:57:57 AM »

My endo says one adrenal gland is producing way too much aldosterone. She prescribed...
[see below]

If I were younger, doc would recommend surgery to remove adrenal gland.

Evidence points towards I also have aldosterone issues......


I found the Rx I mentioned above in my post:
eplerenone
https://www.drugs.com/mtm/eplerenone.html
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #47 on: May 19, 2021, 04:26:17 AM »
I'm sick of these stupid arrogant NHS GPs they are the absolute worst. I have had kidney dysfunction and pain since friday, purple feet, intense inter cranial pressure, rashes on chest and kidneys, muscle pain and spasms around kindeys and chest, irregular heart beat and palpitations, and this has all been so bad I haven't been able to do anything normal daily activities. I didn't realise my dads electrolyte supplement had 100% Daily Value of potassium citrate and it seems to have started from this I was also taking potassium phosphate drops tiny dose 4% of Daily value, I was also taking a quarter of lithium ortrate pill which also can affect potassium balance and kidney function, either way it started from taking these so probably either potassium was too high/ or there was an electrolyte imbalance.

When I eat meat, even a small amount triggers bad kidney pain, and last night I had a small steak and couldn't sleep last night as the pain was discomforting while lying down, I was considering going to hospital but didn't want to get in trouble for going for going for a non life threatening injury at 3am, I also didn't have nausea or chest pain at the time. I took benfotiamine last night (a much more bioavailable form of B1) and it seemed to make it better, woke up this morning with no pain now.
 
I couldn't get an appointment until today and the doctor I spoke to was so arrogant and dismissive he wouldn't want to do blood urea nitrogen test which actually looks at how your kidneys are breaking down protein, all he wants to do is a kidney function test which I've done before and urine protein test, which probably wouldn't show anything either as I have urine strips at home and they show protein is fine but Urine Gravity is elevated at the highest value indicating an electrolyte imbalance and kidney dysfunction. They didn't want to do an albumin test either, this is a more sensitive dipstick test which can detect a tiny amount of protein called albumin in the urine and should be taken if protein urine test is negative.

I never get taken seriously by these doctors and its a major problem, I told the doctors a few years ago that I have tried drugs like LSD, ketamine, weed, mdma recreationally a few times when they asked me and because I said that they put Drug abuse as one of the significant events on my medical file..... And I have medically unexplained on my profile when the tests they have done have mainly just been FBCs and never any kind of proper investigation. Because of these two things I can never make any progress or get taken seriously when I have an issue, what a joke... I never even try to get any help from them for POIS or autonomic dysfunction but things like kidney pain and infection symptoms I have been trying to get help with.
« Last Edit: May 19, 2021, 05:24:50 AM by Iwillbeatthis »

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #48 on: May 23, 2021, 11:41:45 AM »
On friday night I couldn't sleep because my calf was in so much pain, lying on my side or front made the pain a lot worse. The veins on my right calf had become thick and also was visible going round the calf, my other calf has nothing like this., the morning after the pain from my calf had gone. I attached a pic bellow. I was also getting tons of pressure in my abdomen which felt very tense and wasn't related to my bowels. I was in extreme distress and felt serious these whole nine days but it seems to be getting better now, I couldn't even do a simple activity like write a post or an email. I also had temporary feelings of coldness.

My leg never swelled up and the vein is only visible when standing, I'm unsure whether this is a blood clot or not. My feet were turning red and purply at the joints and toes and my heel soles also were sore to walk on at times. It felt like the fluid and blood pressure kept switching in my body from high to low.

All of this whole crisis was induced from taking potassium and not even large amounts, I suspect there is some dysfunctional potassium channels as potassium and sodium were low in hair and at the lowest range for urine, but blood shows potassium as low end of normal... Hair tests for minerals give a wider view of whats going on with your mineral balance as they can show whats been going on in a three month period rather than blood tests which just show you whats going on at one specific time and this can be affected by meals etc. Minerals also deposit in your tissues which is another reason why hair tests can be more helpful.

My dysautonomia from showers also had stopped when the first week of using potassium before this crisis started.
« Last Edit: May 23, 2021, 12:00:24 PM by Iwillbeatthis »

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #49 on: May 23, 2021, 11:52:24 AM »
On friday night I couldn't sleep because my calf was in so much pain, lying on my side or front made the pain a lot worse. The veins on my right calf had become thick and also was visible going round the calf, my other calf has nothing like this., the morning after the pain from my calf had gone. I attached a pic bellow. I was also getting tons of pressure in my abdomen which felt very tense and wasn't related to my bowels. I was in extreme distress and felt serious these whole nine days but it seems to be getting better now.


I had to get tests done privately for the first time as the NHS doctors were being completely unhelpful in wanting to do any proper investigation.

My kidney function tests are getting lower since the one I did a few months ago
now my  GFR (Glomerular Filtration Rate)is at 79 from a test this week, the test this week was also done when I didn’t have the kidney pain,   a few months ago my GFR was 89, before then 95.

The average GFR for my age group is 116, a GFR from 60-89 indicates kidney damage with mild loss of kidney function according to https://www.kidney.org/atoz/content/gfr.

NHS normal ranges are 70-130 so I guess my result isn’t low enough for them to investigate properly with scans and stuff..

“This test is a measure of how well the kidneys are removing wastes and excess fluid from the blood. It is calculated from the serum creatinine level using age and gender with adjustment for those of African American descent.  Normal GFR can vary according to age (as you get older it can decrease). The normal value for GFR is 90 or above. A GFR below 60 is a sign that the kidneys are not working properly. Once the GFR decreases below 15, one is at high risk for needing treatment for kidney failure, such as dialysis or a kidney transplant.”

Urine strips  at home showed my urine specific gravity was at highest value, this indicates significant dehydration and electrolyte imbalance, I told the GP this he didn’t even know what urine gravity was even though its a measure on every standard urine analysis strip they use everyday….

My lymphocytes dropped from 1.6 a few months ago to the lowest range value at 1.0 in this test a few days ago, this makes me think this is all some immunological reaction happening with my blood vessels. They dropped the same like this when I had swollen arteries on my head too a few years ago. I also have high Anti nuclear antibodies, and a high result for one of the phospholipid antibodies which could cause blood clots.


HAEMATOLOGY
Haemoglobin 157 g/L (--*) (130 - 170)
Red blood cells 5.12 x 10^12/L (-*-) (4.5 - 5.5)
Haematocrit 0.453 L/L (-*-) (0.40 - 0.50)
MCV 88.6 fL (*--) (83 - 101)
MCH 30.6 pg (--*) (27 - 32)
MCHC 346 g/L (---)* (315 - 345)
RDW 10.7 % *(---) (10.9 - 15.7)

MCHC and RDW were just slightly outside the normal ranges unsure if it means anything or not, usually my Full blood count shows nothing but the standard NHS test also doesn’t include MCHC.

Aldosterone SERUM/PLASMA 632 pmol/l See below

Reference range:
Resting < 640 pmol/l
Upright 61 - 970 pmol/l
Result from Referral Laboratory ID

Aldosterone was just inside the highest range, never had tested this before.

BUN and albimum were normal which makes me think, this is something rarer, there are two rare kidney syndromes Bartter syndrome and Gitelman syndrome. These syndromes impair the kidney's ability to reabsorb salt and cause imbalances in various electrolyte and fluid concentrations in the body.

Here is a case showing a person with sjorjens developing Bartter syndrome
https://www.sjkdt.org/article.asp?issn=1319-2442;year=2020;volume=31;issue=5;spage=1144;epage=1147;aulast=Fraj

This persons kidneys tests and electrolytes were all normal until they did a Electromyography

Blood electrolytes were normal, I wonder what urine electrolytes would have shown.

I've attached full blood test results bellow which show more things, I think the next step is to get a CT scan of abdomen privately however today my symptoms have improved a lot as I have been avoiding potassium and meat, yesterday I didn't eat any meals as appetite had gone. Kidney pain and leg, feet pain have stopped now I only have slight pressure in abdomen.
« Last Edit: May 23, 2021, 11:56:20 AM by Iwillbeatthis »

Muon

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Re: Iwillbeatthis treatment and case diary
« Reply #50 on: May 23, 2021, 04:17:37 PM »
https://en.wikipedia.org/wiki/Urine_specific_gravity

dehydration
decreased blood flow to the kidney

It could be both. Decreased blood flow leading to dehydration. I'm thirsty when leaving a POIS episode. The abdomen... sometimes i feel my heart rate in there. Impression I get from vascular system in general: Inflammation in certain segments of blood vessels, spasm, bulging, tension in other parts, weird peristaltic motion. I think the vascular system is a major player. I encountered this disease, autoimmune cause which affects blood vessel segments: https://www.sciencedirect.com/science/article/pii/S009167492100734X

I wonder if low lymphocytes stem from infiltration of tissue, like blood vessel wall. Inflammation in wall could attract these cells. I now start to suspect that certain injuries in my body are artery related. Inflamed parts could affect peristalsis. But then again these pesky mast cells surround blood vessels as well. I get bubbly urine after symptomatic episodes.

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #51 on: May 27, 2021, 01:14:53 PM »
https://www.youtube.com/watch?v=jlv6nxrSWiQ&t=5269s - Personalized Medicine to treat Autism using off-label generic drugs

Good watch, we could use some of the treatments mentioned in this video for POIS. This man has successfully treated his son with severe autism by reading all the scientific literature on autism and using a personalised treatment therapy with off label generic drugs.

Some of the genes he mentioned at the end I realised I have mutations for such as:

SLC1A2 homozygous for both variants - encodes glutamate transporter GLT-1, responsible for 90% of glutamate uptake
GPX 1 - Glutathione oxidative stress
BDNF - homozygous
MTHFD1 - 3 distinct enzymatic activities related to folate. Causes disturbed methionine synthesis and autism

4 Features of Autism mentioned in the video:

Neuroinflammation
Channelopathies and DEGs
Oxidative Stress
Central Hormonal Dysfunction
 

« Last Edit: May 27, 2021, 01:25:24 PM by Iwillbeatthis »

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #52 on: May 28, 2021, 04:11:24 PM »
I bought the Nebula Genomics premium membership which compares your own DNA results to the large clinical studies done on genetics.

Most of the studies for each condition are comparing a combination of 50-200 gene variants and then ranking your risk based on variants with positive effect sizes and negative effect sizes.

I was in the 100th percentile  meaning very high genetic deposition for Primary biliary cirrhosis, Venous thromboembolism (blood clots), Primary open-angle glaucoma, Apolipoprotein B level, Mosaic loss of chromosome Y, higher vitamin D level.


99th percentile - very high genetic deposition for Melanoma, Cerebral cortex thickness, Migraine, bone mineral density, daytime napping, larger heart stroke volume

97th/ 96th percentile (very high genetic deposition) for Larger brain volume, pulmonary fibrosis, tourettes

89 - 92 percentiles - High genetic deposition for Lewy body dementia, Autoimmune thyroid disease, Alzheimer's disease,  larger left ventricular end-diastolic volume, larger cortical surface area, higher blood iron level, lung adenocarcinoma, squamous cell lung carcinoma,  retinal detachment


How they calculate your genetic predisposition "To calculate your genetic predisposition to venous thromboembolism we summed up the effects of genetic variants that were linked to venous thromboembolism in the study that this report is based on. These variants can be found in the table below. The variants highlighted in green have positive effect sizes and increase your genetic predisposition to venous thromboembolism. The variants highlighted in blue have negative effects sizes and decrease your genetic predisposition to venous thromboembolism. Variants that are not highlighted are not found in your genome and do not affect your genetic predisposition to venous thromboembolism. By adding up the effect sizes of the highlighted variants we calculated your polygenic score for venous thromboembolism to be 1.42. To determine whether your score is high or low, we compared it to the scores of 5,000 other Nebula Genomics users.We found that your polygenic score for venous thromboembolism is in the 100th percentile. This means that it is higher than the polygenic scores 100% of people. We consider this to be a very high genetic predisposition to venous thromboembolism. However, please note that genetic predispositions do not account for important non-genetic factors like lifestyle. Furthermore, the genetics of most traits has not been fully understood yet and many associations between traits and genetic variants remain unknown. For additional explanations, click on the column titles in the table below and visit our Nebula Library tutorial."

I'm considering getting my whole genome sequenced by this company,  23andMe and AncestryDNA only decode 0.02% of your DNA while Nebula decode 100%. This way I can look more in depth at my genes and access rarer ones. It costs 300 dollars to do this, the sequencing of the first ever human genome cost over $3 billion lol.
« Last Edit: May 28, 2021, 04:36:29 PM by Iwillbeatthis »

Muon

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Re: Iwillbeatthis treatment and case diary
« Reply #53 on: June 07, 2021, 05:19:41 AM »
I was in the 100th percentile  meaning very high genetic deposition for Primary biliary cirrhosis, Venous thromboembolism (blood clots), Primary open-angle glaucoma, Apolipoprotein B level, Mosaic loss of chromosome Y, higher vitamin D level.

https://en.wikipedia.org/wiki/D-dimer