Platelets and Alcohol

Hi Everyone! I'm still in the "we can't call it ITP yet, we have to do 1 million other tests first" phase, however I did get some good news today...
I went to my hemo for my follow up to my initial consult 2 weeks ago. At that time he told me not to drink any alcohol, as he thought may low count may be due to a hyper-sensitivity to alcohol. (I am not a huge drinker, but I love my nightly red wine and I tend to sometimes over do it on the weekends---at least I'm honest? ) So I did not touch a drop of alcohol and my count was up to 82000 from 69000 2 weeks ago.
I'm praying that this is the begining of a steady climb and I can finally have a reason for this debacle! I go back in 2 more weeks for another count. (ps my liver functions were also slightly elevated).
I know it's probably way too soon to celebrate, but I thought I'd share my encouraging news

Hi, I also have a sensitivity to alcohol - similar social use and gamma gt liver enzymes elevated. I gave it up when diagnosed, which is now over the 6 months period when my haemo says it officially becomes ITP. My platelets have continued to rise very slowly, with only one dip, but are still just below 100.
With luck (and good management) hopefully we can both report normal levels in the not too distant future.

Sally- so glad to hear I'm not alone! Please let me know your progress and I will do the same. How slowly have your platelets been increasing if you don't mind my asking?
I will keep you in my thoughts

VERY slowly, but as long as they keep increasing they can go as slowly as they like. I am still going through menopause and have been seriously detoxing so no big expectations or stress.
Good luck and good health

did your doctor do a bone marrow bx to diagnose ITP or was did he think it was strictly alcohol-related?

No Jenna, Bone marrow biopsies are not usually required to diagnose ITP - Sandi posted a great explanation of it a few weeks back. Diagnosis is usually a matter of ruling out everything else.
Platelets are funny things and I was just reading a recent post by Sandi talking about how it is often difficult to say what caused someone's ITP.
I believe it has to do with a few things: a genetic propensity (or inheritance), chronic physiological stress caused by underlying illnesses or an imbalance in lifestyle factors, and then sometimes an acute episode such as a virus, vaccination, allergic reaction, drugs etc. When any or all of these tip the physiological balance it causes inflammation and a significant change in our immune system and hello Itp.
Anyway, this is my theory as a relative newcomer to Itp. Would love to hear what other people have to say about it.
Sorry Jenna, I'm sure it's more than what you wanted to know. Your question just got me started.:blink:
I hope your platelets behave themselves and go quickly into the normal range and Itp is ruled out.
Best wishes, Sally

Thanks Sally! I definately appreciate your input! I am just so confused as I'm sure are so many others. My Dr. made it sound like, although a BM bx was not necessary to dx ITP, it was necessary to rule out other cancers etc that might be causing the low count. However, ALL my other counts are normal (except for a couple of my liver enzymes) and I feel great-no fatigue, no bleeding, working out 4-6 times/week, currently not drinking, etc. It seems like most people on here have low platelets a few consecutive times and BAM! they are dx with ITP....why is my Dr. making this so difficult!! LOL It's not the ITP that has me super nervous...its all the other what ifs...grrr
Thanks for letting me vent!

Jenna:

ITP is a diagnosis of exclusion, meaning that when all else has been ruled out, ITP is the diagnosis. However, most doctors don't do tons of tests to rule out those "other" things. Usually, all that is needed is the CBC; they can tell by that if there are any other unusual things going on such as low reds or high whites, etc. They also go by the patient - if they have any unusual symptoms such as weight loss, fevers, lumps, etc. Some doctors just automatically do the bone marrow biopsy. Mine did. I was newly diagnosed and didn't know any better. I don't know if I would have turned it down or not knowing what I know now.

I was pretty much diagnosed with ITP from the beginning, even before the bone marrow biopsy and before my counts had dropped more than once. He did a CBC, chest X-ray and that was it.

Forget about the "what-ifs". That will drive you crazy. Some people have been diagnosed with other autoimmune disorders years after ITP and found out that actually, ITP was the first symptom. There was no way to know that at first because the other autoimmune disorder had not developed enough to be diagnosed. It is rare but it does happen and should not be something you spend time worrying about. Having every test under the sun does not ensure that you don't have something else lurking around. All that does is rule it out for now. Very few people ever have to deal with more than ITP and I can't remember anyone coming here after a BMB telling us they had cancer. THAT is how unusual that would be. If you feel great, then you are! That's the important thing.

Sandi is right Jenna - If you feel good then that is all that matters. Enjoy the moment.
I don't spend any more time than I have to in surgeries or hospitals, so if a doctor is wanting to do any tests I make sure I understand why they want to do it before I consent to it. If you still don't understand after the doctor's explanation this forum is a great place to clarify things.
Look after yourself, listen to you body and trust - I have to keep reminding myself of this

Thank you Sandi and Sally--if it wasn't for this website, I'm not sure what I would do. I am a nervous person by nature, so even the slightest problem tends to send me spiraling, unfortunately. I think that because the hema Im seeing is primarily an oncologist, that he is being overly cautious (and in turn driving me nuts!lol).

I will be taking your advice, however--I need to accept the fact that I am a healthy 26 year old and stop looking for things that could possibly go wrong.

Thanks again for your continued support....it means more than you know!
-Jenna

Most of us see oncologists. It's weird at first, but you get used to it.

Hi Jenna,

I was diagnosed Dec 2008 - with me they pretty much admitted me to a ward from A&E (late Sunday night), did more bloods on the Monday and then the aspiration on the Tuesday (went home on the Wednesday). They said to me it was to test for leukemia as if i was making plenty of platelets then they could rule it out - apparently my bone marrow is very healthy, so my platelets are getting munched elsewhere. Platelet-wise, I responded well to the steroids (although the side effects weren't exactly a picnic), so ITP it is.

I seem to react very badly to alcohol - last March I got complacent; I was at 147 and it was my Grandad's 90th birthday - so 4 days of eating, drinking and being merry ensued. My next count I was at 36 - whoops! So with the exception of Christmas (where I really pushed the boat out and had a small glass of rose with my work's xmas lunch and a week later a bowl of tiramisu which has a dash of rum - shocking eh?), I've not touched a drop since May. People keep trying to sway me, but I've been good! Thankfully I've got some very understanding friends, and if I'm in a cocktail bar, it's all about the virgin mojitos and no one else needs to be any the wiser that it's alcohol free

I wish there was a way to see if bone marrow was healthy WITHOUT doing an aspiration....ahh in a perfect world.....
Well, alcohol is the only consistant thing in my life style that I can equate it to. (although I do realize that there is not always an explanation at all)....It seems that my counts have been slowly decreasing for the past few years, but alittle more quickly this past year. My hemo explained that women tend to be more sensitive to the effects of alcohol on bone marrow, which makes sense that after quite a few years of moderate drinking that I would now be having an issue. I have not touched a drop of alcohol since the first week of february- so I continue to pray that my platelets will continue to climb. I need to try those virgin mojitos! lol <cheers!>
thanks for your input....hearing everyone elses stories help me to keep my sanity

Has your doctor given you a reason for the bone marrow biopsy. I was told a biopsy would not be required until I was older (60-70y.o). If it is cancer that they are trying to rule out, I think they should be able to tell from your blood tests- they did with me. Otherwise I would just trust that your bone marrow IS healthy and get on with living.
I found guided meditations helped me get through the stressful period when initially diagnosed. Oasis meditation.com. has free online meditations for all different states of mind etc. and different lengths. They were great to listen to at bedtime. They are harder to download now than they used to be, unfortuneately, and each session needs a seperate file before downloading or you wake up in the middle of the next one or something else.

That's what my doc said about bone marrow biopsy too that I will only need it when I'm 60.

That seems to be the concensus of everything I read online-no bone marrow bx unless older than 60. The only reasoning my Dr gave me about the bx was that it was necessary to ensure that the 'factory' was working correctly, and that there were no early cancers. But, again, all other counts are fine. I see him again on Thur, and am going to tell him that I would like to be monitored for a while and that I am not ready for any invasive tests. My primary MD told me when he first referred me to the hema, that he was sure that he would just track my platelets for a few months and take it from there (my primary MD did not seem overly concerned at all about the entire situation). He assured me that the hema would only do a biopsy if my counts fell to a dangerous level-or if other sx presented. I'm gonna take his initial advice to the bank and keep hoping that my counts have increased more on Thur.

Good luck. Keep us posted

Initially the not being able to drink for long stretches makes you panic - i'm not a big drinker, but when i'm out with friends and there's a bottle of rose making its way round the table, I do get very jealous! It's an annoyance, but my health and well-being come first; the agreement with my haema is that we'll treat if i drop below 20, and as my last count was 32, that doesn't give me much leeway! I do salsa and theatre in my spare time, so the idea of being so ill that i'd have to stop doing those doesn't really appeal. What annoys me though is the number of people i know who i tell that I can't drink because I have a medical condition and they make it out as though this is quite possibly the worst thing that could happen to anyone, and they refuse to believe that I could possibly have a good night without getting drunk or that I could be happy in my life when I don't know if or when I'll next be able to drink. I don't feel sorry for myself, so why should they? i still have a full and active life (and i know when I need to take time to rest) and in the last year or two, I've really worked out what and who makes me happy. I've got a friend who was diagnosed with leukemia recently so compared to him, I've got off lightly.

lol, wine is my absolute weekness....that has been the worst part of all of this so far (well, aside from having 20 tubes of blood drawn during the past month!)
I agree, I try to catch myself everytime I start to complain about not being able to drink. I think about others out there who have soooo much worse to deal with. This is so minor when you put it into perspective. My husband his been very supposrtive too, which helps. It's very hard to adjust to ordering water or diet coke when going out to dinner on a Friday night, but hey, it's much better for my body anyway! All in all friends have been pretty supportive too. The kicker is that we have an all inclusive vacation booked to Mexico at the beginning of april!!! I am praying that I figure this all out and can have at least a few drinks while I'm there....ahhh what timing!

My ITP has never stopped me from having a drink or two or whatever I want. I'm not a big drinker, I usually just have one Bloody Mary when my husband and I go to my parents on Sat's for supper and dominoes. It doesn't bother me to go out and not have a drink, it's the prices that stop me from having one.

I've never not had a drink since ITP - we just got back from Maui: sunsets on the beach & pina coladas [made by a bartender with a heavy hand] just about every night, watching the whales.

I think there is a difference in drinking and drinking. I don't drink to excess, haven't since I was in my early 20s.

Agree Melinda, but also really big differences in drinking between people - I have never been able to have more than two drinks in my whole life without getting very sick, and one drink really hits me pretty hard. I assume it's something with how my body metabolizes the alcohol and it's really different from most of the people I know. Drinking to excess for me = two drinks and = sick. I've never noticed an affect on my platelets, I do have one drink most nights but stopped when my counts were very low due to headaches. But I bet it's similar to how other drugs affect some people's counts and not others, like quinine.

There is a known affect on platelets of alcoholic level drinking - the extreme bruising you sometimes see on severe alcoholics is due to low platelets (combined with bumps obviously).
Erica

I don't drink very often, not cause of the low platelets, but because I don't feel I need to get drunk all the time to have fun. I had 3 southo and cokes last night for my parents 30th wedding anniversary party (they were married on Valentines day 30 years ago this year) and I might have a couple next weekend at my two cousins joint engagement party's, but I probally won't have anything else for long tone after that. I havent noticed a difference with my counts after I drink, a few every so often won't Hurt u, just as long as u don't drink too much or too often

Erica - my daughter with Graves has a hard time with alcohol too. I've read that metabolism can speed up with Graves and alcohol hits faster and harder than most people. You'd think that would change if the TSH is normal and it has gotten better for her, but she still has to watch how much she drinks.

Sunsets on the beach at Maui watching whales sounds absolutely magical - who needs rum?
I really enjoy lime and coconut juice. The problem is that it is usually difficult to buy nice healthy drinks that don't have sugar or preservatives added

I've got Graves too as you know - but alcohol doesn't hit me any faster than it did before Graves. Could it be the medication?

No, this was before the medication. She'd have 3 beers and be out cold. None of us could understand her severe reaction and I was pretty concerned. After she was diagnosed, I happened on an article about Graves and alcohol metabolism. That explained her bizarre reactions. She does much better now, but still has to watch.

So that started before her Graves diagnosis - it didn't, and hasn't happened with me. Very interesting though.

Yeah, about two years before the diagnosis. It got better once she treated. It never occurred to me that something was wrong - I got mad at her on vacation once. Bad Mom.

sally wrote: Sunsets on the beach at Maui watching whales sounds absolutely magical - who needs rum?
I really enjoy lime and coconut juice. The problem is that it is usually difficult to buy nice healthy drinks that don't have sugar or preservatives added

I'd happily trade alcohol for watching whales at sunset on a beach!

But I agree - finding soft drinks which aren't packed with sugar is difficult. People do say "surely not drinking alcohol is good for you" but then it's what you drink instead - coke, lemonade, appletiser, J2O, fruit juice and even the virgin mojitos - all loaded with sugar! All very well giving your liver a break, but not if you're going to give yourself diabetes instead!

I try and balance the fizzy/sweet stuff with glasses of either tap water or sparkling water. At least when I'm dancing I usually get so hot that I only want water anyway!