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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.
This is very helpful. I have had many “low” episodes in the last two months and could not figure out why. SO, Why does eating carbs make us crash? My Dr. told to me to have a high protein breakfast and a good carb dinner w/ some protein.
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.
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.
Hi BenP, I read through your posts since last year. It’s good to see your improvements over time. I will take your B6 advice. I too noticed the fish oil making me feel “not so good”.
I realize I’ve had AF (under the surface) for years and it finally starting rearing its ugly head last May, and with occasional fight-or-flight responses even months before then. It was just in the last 3 months that I finally put everything together and all my symptoms match up. There is no help from doctors. I struggled these 3 months at work too and I don’t even know how I made it through. I’m now with family for a month to try and relax a bit. But if I don’t go back to work, I lose a lot. In the end, I know my health is more important than financial/material losses, but who wants to start over years of hard work? Anyways, I’m just wondering how often you had fight-or-flight responses during a typical day (or week). Mine were pretty much constant at their worst and now it’s here and there throughout the day. Ahhhh. Just wondering how much and when indicates a recovery process (and out of this misery) because it seems to change all the time? I want to go back to work but the panic just makes it so hard to concentrate because I’m fighting myself to act normal. And that makes it worse. I’ve always been outgoing and exuberant. I don’t recognize myself at all – this is the pits. How to survive at work???
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.
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.
Ben,
Buddy, I WAS you. We have a very similar story. ” I’m fighting myself to act normal.” That was me. I had to ask myself how could “fighting myself” every really serve me. Your body is sending you a very clear message. It doesn’t want to fight. The hardest lesson to learn in AF is to surrender. I know missing work is so tough and stressful and will hurt your wallet, but you HAVE TO listen to your body and trust that things will be ok. Don’t fight. Be gentle to yourself. The universe whispers,and then it yells and then is body slams. Make sure you listen. You’re not alone. I hope this helps.
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.
Are you going to get a comprehensive stool analysis done? Let us know if it shows up any pathogens or parasites. Gut imbalances and leaky gut syndrome can be big contributors to fatigue.
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 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.
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