Saturday, April 02, 2016

ITP Update

I've got a stack of emails in my inbox asking how I'm doing on my ITP-busting mission. There aren't many things people email me about, but that is one of them, and it's always nice to hear from others that are on the ITP rollercoaster. Hello!

So, how am I doing? Have I managed to 'healthy live' myself into a drug-free remission?

Not really. But, I'm doing ok.

It's been nearly four years since I found out I have ITP. At first I thought I contracted it after suffering glandular fever in 2009, but in talking with family, I now think that I may have had it since childhood.

I particularly remember at times my legs and forearms being covered with bruises and people asking me if I'd fallen off my horse. I remember being inexplicably fatigued, unable to keep up in cross-country runs, falling asleep in high-school. So.. who knows?

The only normal platelet test I have on record is from 2003, and that was 173,000. The normal range for platelets is 150,000-450,000, so, 173,000 is low-normal. In 2009 my platelets were at 100,000, and at the end of 2012 they were also 100,000, rising to 107,000 a few months later. Since then, it's been mostly downhill. My most recent tests (approximately every 3-4 weeks) have been 57,000, 54,000, 67,000, 57,000. Since August 2014 all counts have been between 54,000 and 85,000.

However, over the years, I have seen a few trends, things that 'possibly' correlate with either lower or higher platelet counts. As you can imagine, I've tried quite a few things over the past four years, nearly everything that anyone suggested might help platelet count or immune system modulation. 

Things that seem to help:

* Vitamin C intake at about 5g a day
* Probiotics, particularly lactobacillus rhamnosis
* Turmeric
* Gluten-free diet
* Consistent strength exercise and (especially) yoga. The count of 173,000 in 2003 was when I was training for a bodybuilding competition. I was very, very fit.
* Lower body fat levels
* Minimal intake of caffeine and alcohol
* Maca powder
* The 'happiness factor'. I'm going to elaborate on that later in this post

Things I'm on the fence about (i.e. seemed to help at first, but the effect was not sustained, or I didn't keep it up):

* High dose vitamin D (first count after starting it was 95,000, next was 75,000)
* Vitamin E supplementation
* Intake of dairy products. Whey protein does seem to increase my counts: at my highest counts I was was drinking it every day, and I have a personal theory (i.e. I've seen no science on this) about the immunoglobulins in it. These can confuse the immune system temporarily (this is how an IVIG infusion works) and I'm not sure if that's a good thing for someone trying to reduce a particular antibody.  I've been off dairy for about two years now, but it's filed in my brain as something to investigate further.
* Grape seed extract and green tea (this was part of a diet designed to influence the Th1/Th2 balance, but I did not continue with it as it didn't seem to be working, and was really complicated)
* Boswellia (I want to try this again, but was using a product sample and ran out)
* Vitamin A (I'm trying this now)
* Alcohol and caffeine abstinence (no difference between complete abstinence and a 'now and then' approach although counts trend higher when I'm not addicted to caffeine)
* Digestive Enzymes
* No added salt (hated it, didn't keep it up)
* Higher protein intake (generally higher counts, but I've also had a few high counts on a lower protein diet. Consistently higher counts have been with higher protein intake.)
* Eating shellfish (mussels, oysters)
* Exotic mushroom extracts (Reishi, Shitake)
* Fermented foods (When I'm drinking a lot of kefir and kombucha counts trend lower, but it might be coincidence)
* Plant-based/vegan diet (my lowest counts happened when I started a plant-based diet, but I've also had a couple of unexpected spikes into the 80's)
* High dose K2 (I think this has no effect, but I've only been on it for two months)
* Low fat diet
* Intermittent fasting (This had a slight positive effect, but it triggered some binge eating after a few months).

Things I think had no effect:

* Paleo Autoimmune diet (however, this was super useful as it removed suspicion from everything excluded: all grains, legumes, seeds, nuts, dairy and eggs)
* All other strict exclusion diets, with the possible exception of gluten
* Omega 3 supplementation
* Papaya leaf extract (had high hopes for this effect)
* Sesame seed oil
* Mastic gum
* Juicing and smoothies

Things which I'm pretty sure lower my count:

* L-lysine supplementation (have tried it a few times, counts dropped each time)
* Regular gluten consumption
* Complete alcohol abstinence (yes, weirdly, but I've also had a few spikes while alcohol-free. I think alcohol abstinence has coincided with times when I've been trying to adhere to a diet as pure as what a monk on a mountain would eat. That is: making myself miserable)
* Melatonin 
* Ketogenic diet
* Low protein diet (?)

And the one thing which I know lowers my count:

* Stress! It's so bad for you!

As for symptoms, there are two things that seem to affect my symptoms without affecting my platelet count (i.e. they affect function of the platelets I do have), and those are:

* Green vege intake (vitamin K1 intake, I'd say). More = fewer bruises and bleeds
* Alcohol.

A combination of stress and too many wines in the evenings can be relied on to see me wake up one day looking like this:

Forearms, elbows, knees and hips are my bruisy places, and sometimes the tops of my hands. I used to hide them but now I don't care. All my friends know what its about.

Keep in mind that we are dealing with three things here: platelet destruction by the immune system, platelet production by bone marrow and platelet function. As I cannot get an antibody or platelet function test every week ($$$), it is impossible to really know which aspect of ITP is being affected by anything!

Lastly, as I only test every 3-4 weeks, I could just be catching some random ups and downs. In other words, as regards all of the above:


There is one other thing that I feel confident about, and that's the previously mentioned 'happiness factor'. I keep pretty good journals, and it's clear that higher platelet counts have correlated closely with times of my life when things were going well, and I was feeling happy, optimistic and relaxed. These were times when I'd say I felt most like the 'me that I want to be' and had things to look forward to.

A few things happened between highest and lowest counts. For a start I injured my shoulder, which stopped my daily yoga practice, then I injured my back, which stopped all exercise for a while.  Then I came under some stress with my university research project, said 'yes' to too many volunteer activities, experienced unrelenting time pressure and had that feeling where life is squishing the joy out of your soul.

I also realise in retrospect that I created stress for myself by trying to micromanage my nutrition.  At times it has seemed that the harder I try, the more I restrict my diet, the lower my counts get. I don't think that's because of what I was eating, or not eating per se, but because I was getting tizzy three times a day about food. I was going down the deep dark rabbit hole of trying to find a food trigger for ITP: 'omg, it's gluten! no, it's PUFA's! maybe it's nuts and seeds! maybe it's eggs! it could be grains! it could be red meat! starches? sugars! plant toxins! etc etc... etfreakingcetera'. It was much better to eat delicious meals with fresh ingredients and just chill out about it all.

Ok, what now?

What I'm doing at the moment is just getting myself back into a generally healthy low-stress lifestyle and mindset. Nothing complicated.

* Healthy nutrition, mostly plant-based, whole foods, things I like
* Reduced alcohol and caffeine to 'now and then' (alcohol is no problem, caffeine is a  WIP as I'm currently very addicted (yes, again... you may judge me harshly for this, I deserve it)).
* Exercise (2-3 days weights, 2-3 days yoga)
* Time management and time out
* Sleep 8-9 hours a night
* Positive self-talk (sounds very new-agey doesn't it? Works for me though)
* Fun and relaxation
* Avoiding stressful interactions, including online (Facebook groups... ugh... why do I do it to myself?).

I'm also going to try a few things that I think raised my platelet count, but in a more coordinated manner, starting with the vitamin C (5-10g a day) and lactobacillus rhamnosus. I'll continue that April to July, see if anything changes and get back to you.

That's it, apologies for the novel, but there's a lot to say! If you are an ITPer, please comment me below, let me know how you are doing, and if you've found anything that helps / doesn't help.

Next weekend I think it's time for a recipe. :) I'll write another ITP post at the beginning of July.

1 comment:

  1. Well, can't say you haven't tried. I wonder if the dairy is confounded with the protein intake. But I guess you've teased that one out.

    "caffeine is a WIP as I'm currently very addicted". Seriously I don't think anyone is in a postition to make judgment on you over that. We all have our little foilbles. Mine is late nights and FB! Not that I get into slinging matches with vegans or anything...but I guess your nutritionist hackles would rise at times as mine would with comments on phlebotomy!


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