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I finally got my gut biome analysis back and it showed very low E.coli and high B Vulgatus which is common with bowel inflammation. So I have treatment to replenish E.coli levels, heal gut lining and reduce B Vulgatus. Having said that, my fatigue and hypoglycemia is much better just having given up gluten, but perhaps the inflammation issues are part of the reason gluten was triggering my problems.
I am still waiting for my gut biome analysis to come back, its taking for ever. But when I went in to organise the test with a local nutritionist she suggested cutting gluten and dairy. I have had a really good response to cutting gluten, and when trying it again with pasta a very obvious reaction. I’d been eating a lot of bread trying to gain weight, but I was probably doing the wrong thing.
My afternoon energy crashes have all but gone, and my hypoglycemia is calming down. I can eat a bit of sugar and go longer between meals, it is very encouraging so far.
I’ve had a lot of problems with blood sugar, after eating meals and also at around 3am. I’ve been treating for pyroluria which has helped somewhat, but the biggest help for me has been cutting out gluten. Seems to be a link between gluten sensitivity and blood sugar crashes.
Yes, I don’t think the melatonin is a good option from my experience, as you describe, it didn’t feel like quality sleep, and lack of alertness the next day.
I feel like I get caught in a loop, lack of sleep makes me have to push myself harder to get through the day, and I end up more stressed and exhausted, then can’t sleep and around we go. I used the Taurine/L-Theanine/inositol again last night, promotes GABA conversion and lowers glutamate, seems to be helping so far.
Yes, I’ve had a bit of bloating and gas, and some minor gut pain, and also malabsorption issues, losing weight and poor protein absorption. I also had a bad response to probiotic with strep strain in it, so I’m suspecting strep overgrowth (SIBO), or perhaps candida.
I have an appointment with my doctor treating pyroluria in march so hoping to have the results back for that.
My 3pm crashes are pretty much gone, so I think my adrenals are coping better, and my brain is working a lot better, but still getting some periods of low dopamine symptoms (ringing ears, restless leg, foggy thinking, mild fatigue), Tyrosine seems to be helping with that. So getting close now, still it seems pyroluria is a lifetime thing, so it will always have to be managed.
I have used melatonin supplements for helping with sleep, but it can leave me feeling drowsy the following day. There are some other supplements like passionflower extract that helps me, also magnesium (Glycinate) before bed can help and I’ve been having some success with Taurine/L-Theanine supplements. Another that I have heard is helpful is PharmaGABA, which helps increase GABA levels in the brain, low GABA can lead to a jittery, hyped up feeling.
I get tinnitus as well, mine appears to be related to low dopamine production.
I’ve worked on B6, zinc/copper balancing and added tyrosine to my supplements and have had an improvement. I have pyroluria which prevents absorption of B6 and zinc, and also overloads the adrenals causing problems for NT synthesis.
I’m starting to feel better again now, but I’m going to have more of a look into gut issues with a microbial screen and see if there is any overgrowth I can address. I have also added L-Tyrosine which helps produce dopamine, a lot of my symptoms appear to be low dopamine related, and it is a common issue for pyroluria sufferers. The low B6 and zinc contribute to lower neural transmitter production and poor gut conditions.
I was doing really well up to about 2 weeks ago. I started taking biokult probiotics and all of my symptoms returned. Seems the strep strain in biokult isn’t well tolerated by people with pyroluria. Think I’m getting back on top of it now though.
I found my anxiety responded really well to B6/P5P in the mornings, you could try some of that. P5P is the active form of B6, some people have trouble converting it, so taking it as P5P can be more effective. You can order pyrrole urine tests online if you want to test for it.
I was getting a lot of panic attacks a day, triggered by getting kids ready for school, driving, phone ringing, anything where there were numerous tasks to do and a time element. I’d get shallow breathing, dizzy, feelings of being unable to cope, and general freaking out.
So latest update is I’m doing really well, my hypoglycemia is calming down, my energy is building up. I still have to be careful over doing it, but otherwise I’m feeling very good. I’ve been working lots out about the condition and it seems that the connection with B6 and gaba production (the stuff that calms us down at night and regulates our brains responses to input, stress, danger, etc) means that without B6 we are more likely to be in a fight or flight state more often. Any small thing can set us off and each time our adrenals fire up.
There’s lots of interesting info out there about gaba and glutamate on dr lams site. Also I found that fish oil for me was bad for anxiety.
I went through a similar thing. I would get heart palpitations, almost like my heart was hiccupping, dizziness, sleep problems, etc. If you are getting some relief from taurine you could have low gaba production, it is the thing that regulates your brains response to stress. To generate gaba you need B6 and zinc. Some people have problems absorbing b6, so they take p5p.
It may be a good test to try some gaba supplement, it doesn’t always work, because of the brain blood barrier, but sometimes people get good results. You can also look into pyroluria. If you are B6 deficient and your gaba production is down, then your adrenals can get overloaded.
Well for me it is the high GI carbs that make me crash with reactive hypoglycemia. That seems to be caused by problems with insulin and converting carbs into glucose. I’m finding biotin and chromium are helping a lot with this.
I’ve just begun seeing a doctor trained in Pyroluria and he has upped my B6 and zinc supplements and I’m starting to improve again. Looks like I’m getting there.
Another update, I had a bit of stress in September and have been feeling a bit flat, but nothing like the fatigue I felt before starting pyroluria treatment. I’m not having those bad 3pm crashes, and I can do physical activities like mowing or washing the car without collapsing for days afterwards. My sleep is good, and no anxiety attacks, I am far more functional now than I was. Coming up on 3 months of treatment and improvement now and I think this is the answer. Hopefully my story helps some others, it has been a hard journey.
Another update – feeling really good now. Had lots of energy the last week or so, and I feel generally happier. Little things that would get to me in the past, just wash away now, arguments with people that would in the past become something that I would dwell on for days get forgotten about in minutes. I don’t get frustrated with people like I used to, even my driving has calmed down from quite aggressive ‘must get past everyone else’ to just cruising along.
My 3pm energy crashes have gone from needing to lie down, to needing some protein to keep me going to being able to power on. Seems my batteries are holding more storage now. I’m hoping this keeps going.
