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Joel's Log

My health has improved significantly and my serum retinol is still high. I don't follow a restrictive nutritionally unsound diet though, cutting out food groups and worrying about tiny amounts of carotenoids is doing it wrong IMO.

After a year and a half I'm still full of vA but I saw major benefits soon after going low vA. When the process takes so long I think we tend to forget about previous symptoms and how we felt. Dropping intake of vA is an immediate relief for the body.

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BellaJennypuddleduck

I’m going for the slow approach to reducing vA in the body. It’s accumulated for years so I’m not going to get rid of it overnight. I’ve eliminated the major sources of incoming vA & am supporting my detoxification pathways for outgoing vA so it should slowly reduce. 

@are - I shall try & give you my current take on your question about what is actually happening. 

Anything that knocks this vA detox process off the slow & steady can cause bottlenecks in the system with corresponding increases of certain forms of vA in the blood and therefore symptoms. For example, anything that agitates vA dumping from the liver can put too much vA into the system for the body to cope with (Garrett Smith work) so too much sun, exercise, stress, for example, can cause a flare up in symptoms. Even if one is not ‘agitating’ vA from the liver too quickly anything that slows down the enzymes for the processing/detoxification of vA can cause problem back ups. These things are many (see GS detox programme). A back up of retinaldehyde can cause B1 depletion which can cause particular symptoms (I’ve definitely had this one). Then if one is not actually getting the vA ladened toxic bile out of the body then this can just re-circulate. Soluble fibre & Karen Hurd’s work I’ve found useful for this (however need to be very careful to start slow). Unfortunately blood tests only measure one form of vA - retinol - they don’t measure retinaldehyde, retinoic acid, retinoic acid metabolites, retinyl esters (storage form that can leak into blood). A panel testing all those could be so helpful in all this but it doesn’t exist. 

What I’m trying to say is that all sorts of things can go wrong with the vA detox that can create symptoms. I feel I’ve done many things wrong over the last 2 years (I could make a list!!). However, each time when I think carefully I’ve done something to either agitate the amount of vA coming out the liver or block it’s processing (4 key enzyme steps). Life gets in the way of always being sensible I find, but slow & steady is the least painful way to do the vA detox imo.

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Curious ObserverpuddleduckRachellil chickOuraniaArena

Great post, @JAJ,  And I agree.   Even before attempting lowered VA I can see looking back that what I called my "lack of resiliency" was doing things that stirred up VA.  You don't need to be on a lowered-VA diet for detox woes to be going on.

Jenny and puddleduck have reacted to this post.
Jennypuddleduck

Thanks a lot @jaj and the rest ❤️

Update:

 

Blood values:

21/10/2020:

Vitamin A: 400ug/l (200 - 1000 norm)

Coeurloplasmin: 0,16 (0,2 - 0,6 norm)

 

Condition:

Relatively unchanged. Due to my chronic illness ME/CFS, it is difficult to assess what exactly comes from Accutane/Vitamin A. I think the dry eyes almost certainly, which I only have at night when my eyes are closed. The dryness varies a lot, I think it increases with a higher fat diet, but not always, but seeing low fat is not good for me either. So the dry eyes are not much better than before the diet, when I ate normally. They were only just a lot worse for a while, I suspect it was Phosphatatidycholine Liquid intake, but I'm not sure -  I'll test it again. So I have not yet observed any extreme progress, fluctuating in the condition like before the detoxification. My hair would feel rather thinner and worse (but this can have umpteen reasons). My skin still dry, but I noticed that especially on the face, I can be remove skin sebum with the fingernail after a warm bath or shower, which maybe means that my skin is a bit oily again and not quite as dry anymore, but I don't know for sure whether that wasn't the case before the diet, I never paid attention. Dry elbow and very dry face skin after shaving beard still the same.I have very low sex hormones, not sure if these are related to Accutane or ME / CFS or both. Well, I definitely had the hope that if it comes from Accutane, my values would improve with the diet, but hormone levels unchanged or rather worse.

So the bottom line, overall I haven't been able to establish any clear improvements through the diet so far, but I can't really judge it from the overall situation either. My very flu-like condition/feeling, which I only have since the ME/CFS outbreak is still very severe and the same. So I don't think it will change with the diet anymore, because I didn't had it in the months after the Accutane end.

In spite of everything, I maintain that I suspect that Accutane played may a part in my outbreak of the disease and that the diet is not a fault at all, but also has no noticeable influence on my condition, since I did not have any deterioration from food ever, which is rich in vitamin A before the diet.

 

Regardless of my not improving condition, I will stay on the diet until next summer, my current diet and planned diet until summer 2021:

 

Breakfast foods:

almond milk, spelled flakes, millet flakes, oat flakes, honey, buckwheat sprouts, sunflower seeds, apples, bananas, grapes, pears, pineapples, blueberries, dates, macadamia nuts, Brazil nuts , Almond butter, millet bread, spelled bread, white egg, applesauce/-juice, coconut- (rare)

Lunch & dinner:

Basmati rice, whole grain rice, rice pudding, quinoa, rice noodles, potatoes, cucumber, radishes, rump steak, chicken, turkey meat, black&kidney beans, onions, garlic, ginger, cauliflower, kohlrabi/cabbage, parsnips, celeriac, mushrooms, bamboo shoots, beetroot, artichokes , salt, pepper

 

( Of course I only eat a some foods from the list and not all every day, for example for breakfast only one kind of fruit - either apple, bananas or beeries. At noon and in the evening I often eat several vegetables)

 

Oil / fat per day:

• 1-1.5 tablespoons -> Omega 3 oil (walnut-chia-thistle-linseed oil)

• For bread and pan: sunflower / olive oil (75ml for one bread (2-4days))

• almond butter, nuts, seeds

• 400mg vitamin E capsules from rice oil a day

 

My plan:

I will continue the diet and hope to reach a value of <100 ug/l by summer 2021, so I would have brought my value from 670 to <100 within 16 months, which is significant and should have a significant influence on my condition, and it should have an impact on my complaints. But even if I don't reach that <100 level, I'll stop. Then I will return to normal nutrition and only avoid the real vitamin A/retinol bombs, as I have recognized the danger of Vitmain A and I will have a lifelong respect for it and feel a very very deep remorse for the 1 year of taking Accutane. But  from personal experience, reports etc. - I dont believe that vitamin A is to 100% a poison, I think small amounts are necessary to support the body. Mindfulness of vitamin A will remain.

 

Thanks for reading and thank you Grant for your help, informations, insights and the whole work!

Joel

Thanks for the update! You keep dropping on your serum retinol levels, very good! Hope you feel better soon!
At least you are not feeling worse! =)

Joel has reacted to this post.
Joel

@joel your ceruloplasmin is crazy high. No copper test? High ceruloplasmin like this means your body is in stage 3 of chronic/adrenal fatigue, general adaptation syndrome or how you want to call it... Once that ceruloplasmin drops and copper becomes biounavailable like in my case. It will be much harder to recover... Do you have symptoms of high copper like racing mind, nervous energy, emotional, unstable mood, impatience, higher blood pressure, water retention, pounding heart etc..? Is it hard for you to just be calm and rest? How is your sleep? You can keep doing low A, but I think it's not the cause of chronic/adrenal fatigue. It looks like you eat a lot of copper rich foods. It's not good for you. You need to keep protein from meat/beef high and keep copper intake around 2mg a day. Your zinc:copper ratio should be 10:1... If you push it to the point of ceruloplasmin deficiency. Your CFS will be 10 times worse.. I was 5 years at home. Not able to do nothing. Just walking outside and thinking about suicide. Not fun... I see you were taking copper supplements? Drop it.. You probably need more chromium, molybdenum B vitamins especially B1. Things that most people are deficient in. Nobody is deficient in copper. It is in every food basically..

@are Thank you! 🙂 Yes, I am curious how my value will be next summer ;D

I know the blood value is not as meaningful, but at least it does not fluctuate extremely, but decreases continuously, which I think is a good sign and speaks for more meaningfulness than values with much fluctuations.

 

@jiri I think you are wrong, 0.16 is less than 0.2 and therefore my value is slightly decreased.Except laboratory / medicine values differ from mathematics. Unfortunately, it only says conspicuously and not whether the value is too high or too low. But I thought 0.2-0.6 is the same as 0.20-0.60 and I got 0.16 ... hope I'm not wrong.

My copper serum value (which is of little informative value - I know) is slightly lowered. I had the assumption that my copper value and therefore also my ceruloplasmin is reduced due to my long term intake of zinc and/or the copper intake in the intestine is reduced as a result. Try to take zinc at a longer distance from food now and take an additional 2mg supp of copper from time to time.

@joel Sorry I read that wrong. So if it's already low you are stage 4.. Serum copper test doesn't have little value when you test also ceruloplasmin at the same time so you can see how much is that copper is free unbound. You didn't answered my questions about symptoms. So if your copper and ceruloplasmin is low. You should start to have copper deficiency symptoms. But you will not solve this by taking copper + eating high copper foods. You don't understand this. Copper is maybe the strongest neurostimulant and it will keep your adrenals depleted/exhausted. It is not about taking more copper. It is about giving the body chance to relax and recover. So your ceruloplasmin will go up again. Which is impossible if you pound more copper. Also by taking zinc when your serum copper is already low doesn't help you at all. It only make copper deficiency symptoms worse. You should start taking zinc, vit C, some molybdenum only during "copper dump" where the body will dump copper to the blood. You can see that dump on blood test when that copper will be crazy high and you feel it. I talked about it before.. Do what you wan't I can't convince every single person with this issue. I am just saying my experience. I was there. Taking copper, eating high copper foods. It doesn't work like that..

Vitamin A 02/13/21:
0.30mg/l  (Norm: 0.30-0.90mg/l)

I'll probably quit the diet in the next few weeks.  After almost a year I don't see any improvement....in my dry eyes either (which only have at night and are made much worse by cannabis and phosphatidycholine, don't know whether there is another cause for this beside VitA, possibly autonomous nervous system&co).
Unfortunately I also got more symptoms night sweats,numbness, drowsiness etc.
in that year and levels for example TSH and cortisol have worsened.
It was worth a try with my Accutane history but I think I should now realize that I have to concentrate on other things.
I will probably test phosphatydycholine infusions soon, I have read a lot of positive things about it and I am curious what effect it has on my dry eyes.
Primarily I will try this for my disease (M.E.), but it can possibly help with many different health problems.
I can tell you how it went, maybe someone wants to try it too.
I would be interested in how it affects a body that clearly has a VitA Toxcity.
All the best to you and good health!