What would you do?

Long story short (for those who don't know) I was diagnosed with itp in December 2012. I've since had a remission, fertility treatment and a beautiful baby boy! I'm pretty familiar with my own personal brand of ITP & I know it bucks some normal trends that people usually find.

I know some things make my count go up - hormone treatments, eating an unhealthy diet, drinking alcohol and being pregnant.

Equally some things make my count drop - healthy eating, losing weight and not being on the pill.

Ever since my steroid treatments ended in march 2014, I'm at least a stone heavier than I'm happy with. And I'm currently trying to lose some post baby weight and eat healthily & exercise. So of course my counts are down - 34 today.

So I'm potentially facing the following dilemma:
Eat badly and have good counts vs eat well, lose weight (& feel good about myself again) but need treatment for itp.

I know this is personal preference so I'm asking what YOU would do in this situation??

Unhealthy eating will surely take it's toll in other ways eventually?

Oh & I've only ever had steroids & ivig treatments. I refused others as they weren't considered safe enough for pregnancy/fertility treatment.

Hey Kat....what a question!

I avoided answering this because I hoped someone else would, but no one did.

(Deep breath) - Ok, I would not sacrifice my general health for the sake of platelets. According to your theory, if you drink alcohol and eat junk, your counts will go up. In the long term, you will end up with bigger problems than lower than normal platelets.

Can you be a bit more specific about your difference between 'junk' food and 'healthy' food? It is well known that things like sugar, salt and refined flour can cause systemic problems, so I do have a hard time believing that junk is responsible for a higher platelet count. Those foods, in excess, will make you feel like crap and can do damage to your body. Losing weight is a good thing and again, I would not encourage being overweight to gain a few platelets. This is a very odd dilemma you have going on here. Most people find that choosing a healthier lifestyle makes them feel better and can sometimes have a positive affect on ITP. I'd try the healthier route for a while and see what happens. You might not get the platelet drop that you are expecting this time.

I agree with Sandi I would be inclined to have a healthy weight with lower platelets. Low platelets will not lead to things such as type 2 diabetes and all its associated side effects.

Lol sandi - I do try & be awkward!! By healthy food I mean fruit, veg, lean protein, low sugar, low processed food. And by junk I mean high fat & high sugar foods.

Eg healthy vs junk
Breakfast - fruit, plain yogurt & porridge vs sugared cereal
Lunch - cous cous salad with feta vs sausage roll
Dinner - veggie pasta bake with bacon vs pizza

Plus lots of chocolate & beer on the "junk" diet!

This pattern has been noticeable for about 18 months. One day on a healthy diet I got green bruises on my feet just from walking & my count had dropped from 54 to 22 in 24 hrs with no other changes I could determine. Along with the hormonal issues, my haemo *thinks* a higher body fat level may maintain higher oestrogen levels as it is metabolised in fat - and I have a very clear link between hormones & higher counts.

I agree that a healthy diet makes me feel better. But my blood seems to disagree.

Mrsb - agreed! Type 2 diabetes & other issues could potentially be harder in the long run!!

Just feeling with a count of 34 like I don't have much wriggle room.

Why don't you do both? Alternate days or something.

Katsim,

I'm curious about your hormones affecting your platelets. I am currently nursing my 11 month old daughter. As she has started nursing less due to eating more table foods, I have noticed my platelets are higher. I know that as I nurse less, my estrogen levels are rising... As opposed to being nearly depleted when first nursing a newborn. I've often wondered if this is just a coincidence or if I will continue to see a rise in platelets as she weans. I've never been able to find any info on this, until I read your post on your estrogen levels...please tell me more!

Taz:

I have heard that women can experience a rise in counts after breastfeeding is finished.

Really?? Wow. This is so interesting to me. I know it could be coincidence, but would love it if it's not. I did mention it to my hematologist and he said it's possible. But I asked lightly because I had never really heard of a correlation with the two and he didn't elaborate. I guess we'll see what happens in the next few months.

Here's a thought

If the estrogen levels rise after breast feeding. Could your eating habbits just be a coincidence? Were you breast feeding and eating healthy than stopped breast feeding so enjoy the bad stuff you avoided while being pregnant and breast feeding?

I found an article on the effect of female hormone such as estrogen on ITP. It looks like that estrogen or similar ones can lower the platelet counts. Here is the article. Hope you can open it.

onlinelibrary.wiley.com/store/10.1111/j.1538-7836.2004.00644.x/asset/j.1538-7836.2004.00644.x.pdf;jsessionid=478376D6CB6CEE8416A1AA560962744E.f04t03?v=1&t=if952oey&s=34accd251b2824af300745f305c482eed577d967

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I tried to open the article from the copied site but it did not work for me. So I will write the title and authors' names so you can find it using them.

"Adverse effect of estrogen therapy in a subset of women with ITP" by Onel and Bussell. The paper was published on 2004 so probably you guys already knew this information.

Taz - my platelet count soared when I was breastfeeding & then plummeted when I stopped. But they also increased during pregnancy when most women's drop - I seem to do the opposite of most women in relation to platelets & hormones. My haemo had a guess at the oestrogen thing but honestly he says I'm a little weird!! Lol!! Hope your counts keep climbing

Winifred - I was ravenous whilst I breastfed & (beer excluded obviously!) my diet was pretty poor because I'd eat anything & everything in sight!! The trend became obvious before I had my little boy and so I chose to eat more & keep higher counts whilst trying to conceive, just to avoid treatments.

Forevertwentyone - I've seen this article and again, my own personal brand of ITP seems to go against the grain.

I really am a weirdo lol!!! :woohoo:

I've been eating a good diet for 11 days now. My count was 34 on Monday. Today I have a nosebleed & bruising that I don't recall causing. I've lost 1lb so I'm going slow and I really am eating quite a lot, so I'm not starving myself. Ah well, will see what Mondays blood test brings.

Good luck, Kat! I hope you can get it all sorted out. It is a strange situation. The main thing though is that you got that baby that you thought would never be possible! I think you should go with a mixture of foods...eat the junk in moderation. Maybe everything will sort itself out in time.

I count my lucky stars every day sandi! I'm
Lucky to have my children and blessed to appreciate them both so much!!!

I weighed up my options - I ate some junk & had a blood test. My count was at 70 - then I did a crash diet for 7 days and lost 7lbs. I ignored my extra bruises - watched out for more serious signs - and am now eating healthily with some junk mixed in to try & maintain both my weight & platelets. My bruises are fading so I'm hoping my count is ok. Will find out next week!

Let us know!

It's possible that if you were to find the right probiotic or probiotics you could eat healthy and have higher counts. Your gut microbia could be messed up which could theoretically be contributing to your ITP. It's one big guesswork but could bring results if successful. There are places you can have a stool sample analyzed to see if your Microbiome is messed up but don't know if it is available where you are.

Katsim,
I was recently watching this video and doctor started talking about people who can't eat healthy food. Maybe you will find it helpful. It is a long video, but at 16.19 he starts talking about those patients of his.

www.youtube.com/watch?v=Ea-VzpdKwrc

Chronic Inflammation is the body's worse enemy.