Turns Out Carnitine Deficiency Is Not My Underlying Issue

  By Harry | April 6, 2013 - 1:04 pm | , , ,
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Yep, it turns out Carnitine deficiency is not my underlying issue, it took a week or so but after reducing my zinc and vitamin B6/P5P considerably because I was thinking/hoping perhaps all I needed was the Carnitine – I went downhill again.

For about 3 weeks I felt superb though when I was taking both the carnitine and my Pyroluria supplements. I’m currently building…building…building with increased doses of zinc/b6/P5P and I feel I have a pretty good point to aim for with these supplements. I’m still sticking to a low FODMAPS diet, not sure if I mentioned before but my wife makes a pretty nice gluten free/glucose sweetened muffin, so really enjoying those. I’m also doing a lot of walking again, as it has always seemed to help, particularly when I go first thing in the morning.

I did get tested for Carnitine deficiency (blood test) but I’m still waiting on those results. I will post about the result when I get them back.

There have been a few comments lately and thank you for those. Have been rather slack at responding, my interest in blogging seems to go up and down a fair bit depending on how I am feeling. My interests/hobbies tend to jump around a lot depending on how I am feeling actually, kind of fun in some ways as I am always getting new things to focus on but also kind of annoying in other ways as I don’t have a lot stickability in my interests.

Perhaps I shouldn’t have changed my blog name from PyroluriaLife as I still suffer from Pyroluria, but I do like the new title as working my way to health is quite a journey.

Anyway, feeling reasonably motivated to write today, so may respond to some comments. Hope your health journey is going well.

 

Carnitine Deficiency

  By Harry | March 9, 2013 - 3:20 pm | , , ,
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Well…hello there.

It’s been a while, so I thought I would post up another update as I have some new information to share. I’m still following a low FODMAP’s diet and the other dietary modification I have made is to stop eating hard-to-digest red meat such as steak. I also have been eating quite a few kiwifruit to keep food moving through my system (if I don’t, I tend to get a bit blocked up).

The above news isn’t really my big news though, my big news (which is given away by my blog post title) is that I started taking Carnitine supplements again and – as I have experienced in the past – it makes me feel really good. So I have bumped up the Carnitine and greatly reduced my Vitamin B6/P5P and Zinc supplements. There are genetic diseases that lead to Carnitine deficiency so this is the avenue I am investigating. Taking Carnitine makes me feel superb, especially at work where I am super focussed now. Energy levels are also great. I think I am really onto something, but I’ve thought that many times before, so I will try not to be too enthusiastic.

I take two forms of Carnitine: Jarrow Formula L-Carnitine 500mg and Doctors Best Acetyl-L-Carnitine 588mg. One of each in the morning and one of each in the afternoon. Key thing is to take it on an empty stomach. If you want to try it yourself, I would suggest you try the Doctors Best Acetyl-L-Carnitine 588mg first – especially if you have brain symptoms.

Carnitine deficiency matches my symptoms in the following ways:

  • Gut issues including decreased motility
  • Muscle fatigue and weakness
  • Low blood sugar/hypoglycemia
  • Brain function abnormalities
  • Fatigue after intense exercise
  • Some evidence to suggestion that alcohol consumption can lead to a Carnitine deficiency ie my bad reaction to alcohol

There does appear to be a number of underlying issues that can cause a Carnitine depletion. One interesting one relates to inability to process fatty acids, particularly long chain fatty acids (which is pretty much all fatty acids we eat). This would also explain the hypoglycaemia that I used to get, in that once I had run out of glucose for energy I couldn’t just metabolise fat. One fatty acid that is recommended, if I have this underlying issue, is coconut oil, as it contains medium chain fatty acids. So I am adding this to my diet.

Another interesting point to note is that for Carnitine to be produced in the body the following cofactors are needed:

  • Lysine
  • Methionine
  • Niacin
  • B6
  • Vitamin C
  • Iron

Obviously I was already taking Niacin, B6 and Vitamin C as part of my Pyroluria treatment, perhaps this is why the Pyroluria treatment benefited me.

Let me know your thoughts on this theory, particularly if you have tried and had success with Carnitine.

Fructose Malabsorption

  By Harry | December 28, 2012 - 12:27 pm | , ,
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I thought I better post up an update as I haven't posted for a while. The main reason I haven't posted for a while is that I couldn't get any consistency with my health but I feel that perhaps going forward I may be able to.

About a month ago I set myself off again when I started eating fruit, examples of the fruit that I was eating included grapes, blueberry jam, apples and watermelon. I've known for a long time that I have a problem with sugar but every so often I try fruit again (because it is natural). I'm not very good with moderation, I often go overboard when I start eating a food group again.

My wife has previously mentioned Fructose Malabsorption before but I didn't think it was that relevant because I didn't eat much sugar anyway. I did some more research and it does look to be the factor that is setting me off. I've been eating a fructose malabsorption diet for the past couple of weeks and is going very well. There was one blip along the way when I started eating oat bran again and it clogged me up.

I was hoping that I didn't have Pyroluria and only a Fructose Malabsorption issue (Fructose Malabsorption is very well known and main stream, whereas Pyroluria is not) but I have tried reducing my supplements twice now and both times I felt like crap until I increased my dosages again. There is still a tiny amount of hope though that I might only have a single condition, as can take up to 6 weeks on the Fructose Malabsorption diet before the full health result appears.

I feel this realisation could be very relevant to people suffering from Pyroluria or Blastocystis Hominis, so it was important for me to post it up.

I have actually taken it a bit further than just restricting Fructose and I am following a low FODMAP diet. You can search for low FODMAP information via google but I am using an iPad app for it, which is published by Monash University in Australia (where they specifically test each item). The app costs about $10 but it works really well, it's actually designed for iPhone but when blown up on the iPad it looks fine and works well.

Monash University Low Fodmap App

It's a weird diet, gluten free, dairy free but not necassarily sugar free – some fruits are alright, some forms of sugar are alright, some vegetables also need to be avoided. It's actually a much more broad range of foods than I was eating. I've even been making blueberry muffins with gluten free flour and glucose as the sweetener.

I'm going to get tested next year for the specific items that are FODMAPS, it's just a breath test after a fructose and other FODMAP challenge.

My digestion hasn't worked this well for a long period of time…but I don't want to get my hopes up just yet. I'll keep you posted.