Help!

[gallach]

Hi all,

Sorry to bother buy I wondered could anyone on this great site help me…I seem to be a loss to the medical profession!

I am a 34 yr old male in London who suffered persistent atrial fibrillation (used to be really sporty so that was the give away) and hashimotos from the age of 29.

Life has been tough since particularly as I used to be so active.

I have had two cardioversions, two ablations and am now on NDT for my thyroid as well as choosing a gluten,dairy and grain free diet.

The docs would give me a 3rd ablation in a moment but I really don’t want it if I cant get to the route of my issue. Which the heart ops and thyroid meds haven’t seem to do as yet as although my irregular episodes have minimised I still feel so tired…… and this is 1 year into my quite restrictive diet.

I did some Cyrex tests and they confirmed I was a the very least gluten sensitive and carried the celiac gene. I also had some food allergies – namely eggs, amaranth, sesame, milk butrophilyn with a whole host of other grains being in the inconclusive range.

Most interestingly and I hope you guys might be able to help me out there, is that I had an Acumen test done and it said I was hyperventilating at a cellular level (always found it difficult to breath whilst running – though I put that down to finding out I had an irregular heart issue) and my red cell fructose 6 phosphate exceeded metabolic capacity by double. It also said that I had fructose 1 phosphate in my cells as an adduct.

Could these be the reasons my ATP might be depleted (I don’t know if it is) and why I feel so sluggish? I read that too much fructose in the liver causes toxins through the body and maybe that is a possibility (I am extremely pale with dark sunken circles under my eyes which I just cant get rid of).

The test house commented that maybe I consumed too much sucrose and fructose and that can cause F1P in cells???

How on earth do I get the F1P out of my cells and going fructose/sucrose free is the only way forward I think?

My doc is looking to send me for a hydrogen breath test to take fructose, glucose and lactulose. Unsure if this is a good idea if I am not metabolising/absorbing fructose properly but I coudnt probably feel any more tired than I do currently. I think the doc is wanting to exclude IBS but I saw the fructose thing and just thought it would be worth talking to you good people. My white and red blood cell count seem to be on the wane in the last 6 months also which I guess means my liver is struggling. Please correct me on any of this as I am by no means sure what im typing is even making sense let alone factual.!!

Sorry for taking up your time.

Best wishes,

Paul

[gallach]

I also forgot to mention I did a comprehensive fatty acid profile and my good cholesterol was shockingly low so have tried to up my fats.

Thought maybe as fat is 1/3 of the cell wall and that I don't have much of it on the cell membrane that this was letting adducts and toxins in?

It all sounds a bit science fiction to me!

I shouldn't laugh really as no doc has a clue what to do next even though they have been very supportive but all of the above are just my own grasping for a next move not a docs opinion. They are at a but of a loss and just call me an extremely complicated case....

[colormist]

"How on earth do I get the F1P out of my cells and going fructose/sucrose free is the only way forward I think?"

This is one of the many curiosities about Hereditary Fructose Intolerance that I have been mulling over. I know HFIers can't process fructose and it gets hung up in our liver, but what happens to it after it is hung up in the liver? Eventually it is flushed out through the kidneys, but how does that process even go about happening? From what you've wrote, it sounds like it might get flushed out of the liver somehow and just hang out in the body until the kidneys get around to doing their thing.

The short answer to your question is "I don't know". I'm not sure if you have HFI. If you had HFI, I would tell you to stop eating all fructose, sucrose, etc and start drinking more water. Lots and lots of water to help your kidneys do their thing. Maybe the same instructions would work for your system, though.

If you need the HFI diet, I have the guidelines on my Pinterest board: www.pinterest.com/colormist/fructose-free-diet/

[christopher]

Hi!

I am sorry to hear you are struggling! I have been trying to figure out some weird health issues for a while myself. As for the reduced activity level, one sympathizes. I also used to be a lot more active, but when my heart rate during exercise suddenly started to rise way higher than normal at the same intensities, running was´t really all that much fun anymore.

I am going to steal what colormist´s suggested to me, and suggest you start taking note of everything you eat, like a food diary. Mind you, I would strongly recommend you jot down everything that goes into your mouth, not just food but also supplements, chewing gums/breath mints, beverages, medicines, etc. I would also make a note of the time they´re ingested, as well as noting times you experience symptoms or sensations that you feel are strange. Other things you might want to consider tracking are how you feel each day in general and making a note of you´ve slept. It´s a big job, but it might be worth it!

As for how HFI-sufferers get rid of the accumulated toxins from the fructose, I have no idea. I suppose the body rids itself of them somehow. It also might depend on which kind of HFI you´re talking about, as there are two different kinds of HFI that are symptomatic (3 if you count fructoseuria, which is benign) - one in which the enzyme aldolase B that breaks down fructose-1-P is defective, and another in which there is a deficiency of fructose-1,6-biphosphatase. So, they are both defects in the metabolism of fructose, but vary in cause and somewhat in effects/symptoms. I´ve personally found the following link to be very enlightening, but if you spend some time googling you can find quite a lot of information and studies on these disorders. ( eknygos.lsmuni.lt/springer/223/II%20Part/135-142.pdf )

[christopher]

Another thing you might want to try, if you´re like me - curious and impatient - I don´t see the harm in getting yourself one of those devices to measure your blood sugar at home. If you do though, I would strongly suggest you go about it smartly and keep notes of your recordings - same as with the food diary.