I know this has come up a few times but I'm still confused. I'm recently diagnosed, I'm 43. All my appointment have been on the phone which makes it a bit harder to connect. I don't understand how alcohol affects the condition. The first doctor I spoke to said to stop drinking entirely, my Macmillan nurse said to stick to the recommended units and the next doctor I spoke to said I could have a glass of wine a night. I need a clear steer so I can decide whether and how much I am drinking from now on and explain it to people who dismiss me saying ' oh all doctors will tell you to stop drinking and smoking, that's just what they do'. I gather it varies from person to person but can anyone explain the rationale behind limiting alcohol intake.
Essential Thrombocythemia and Alcohol: I know this... - MPN Voice
Essential Thrombocythemia and Alcohol
This is a tricky one, there is no obvious reason to not drink except for the fact that it can dehydrate you which will not help with levels & how you are feeling. Some people find drinking even a glass of wine makes them feel a lot worse so don't drink. My hubby actually is always a lot better after a couple of drinks but it's mindful of sticking with the recommended units a week. So if you are getting conflicting advise from your medical professionals ut probably comes down to your own personal thought on it & presuming that whatever meds you take won't pose an issue.
I agree with Chaz1, its tough to advise as we are all different.
When our blood is a bit thicker for whatever reason being dehydrated is obviously not a good thing, some people also have knock on issues with the liver so alcohol can be an issue there.
I personally enjoy a beer or two, but always try to have 2 or 3 consecutive days alcohol free a week....and keep well hydrated, but then that advice would be relevant to someone who doesnt have a medical condition too, just perhaps more so for us.
Ive also started doing extended alcohol free periods....January and October...not for charity but just for me, and i find its a good cleanser.
You will know how you feel, your doctor will keep an eye on your blood counts and if your doctor says dont drink just ask why, and what the areas of concern are.
If you feel ok after a glass of wine or two, your counts are fairly good and not being impacted by it, then i think why not...the old saying about ' a little of what you fancy ' and all that.
With you being newly diagnosed its going to take you time to work out what works and doesnt, and that isnt just with regard to alcohol....maybe some trial and error.
I wouldnt worry if you get something wrong, we all do, our bodies are resilent and forgiving even with our conditions....if you do, learn from it and adapt....its repeated mistakes that cost us, and even that applies regardless of if we have a condition or not. (Within reason of course, i wouldnt recommend an all nighter followed by throwing tv's out of a hotel window rock star style 
)
Hi queeniethequeen,
I have been drinking alcohol all of my MPN journey 20+ years and with several different medications.
You are the expert on you, and only you know your limits and how it effects you. My advice is to drink more water than usual on and the day after alcohol consumption, and to not drink excessively, Life is for living and our conditions are life limiting enough, if you enjoy a drink then have one. While working out what works for you air on the side of caution. I have downloaded a drinkless app and log my alcohol use, and have at least 1 day a week off, and the odd dry week here and there.
Good luck and have fun.
Ourlife
Not much to add to the 2 great replies so far.
I would just like to re enforce the de hydration factor of alcohol. I enjoy social drinking (within the current uk unit guidelines) but have found that drinking water or squash after an alcoholic drink or having a glass of water in between drinks in a pub etc really helps.
For those that enjoy a responsible social drink I think, even with ET, there are benefits to be had in the form of reduced stress levels.
Hi Queenie,
I lived in England and now live in Austria. I Personally find that both these cultures drink a lot. 1-2 glasses of something each evening is well-anchored and seen as normal in these societies. I have an occasional glass of wine a week, when I’m having dinner with friends. They often drink 3-5 glasses with dinner when with guest. They are really needing alcohol to be able to 1. relax and 2. to have fun.
Since my ET and doing 3 years of clean foods, and detox, I have found that Alcohol causes changes in my body, if it’s more than 1/8l glass of a good red wine. Worst of all is Champagne or any white sparkly wine! I get dizzy, brainless and feel Like I’m in another dimension, even after a very small amount. My nasal passages are dry in the night and I wake up with dry, swollen eyes, even when I’ve drunk a lot of water.
Fact: I am by nature extremely aware of Changes in my body. Since cleaning all the chemicals out of my life, my senses are more acute. Most people are numbed up by the chemical load from out foods, drinks, air, cosmetics (that all end up in our blood stream), high sugar intake, etc. that they hardly feel differences when drinking.
Fact: We know that alcohol dehydrates, kills brain cells and causes sugar spikes in the blood stream. After years of regular consumption, it can lead to diabetes and eventually some form of dementia, especially In women. Some people’s detox pathways are amazing because of their genes. These are the ones that take a licking and keep in ticking. I’m not one of them. It’s also one of the reasons I have ET.
If alcohol is consumed, it should be organic. wine and beer seen incredibly packed with pesticides. They should be drunk in moderation and with food, so as to avoid the sugar spikes. For most people, red wine is much better tolerated and digestible than white or rosé, unless one has a histamine problem. In that case alcohol should be avoided completely.
Note: the alcohol consumption guidelines are not good for everyone. The government and medical system has allowed all the Food additives that are causing havoc in our living, long term. Why should we trust what they say? Just listen to your own body. We are all different.
A fun Case:
My great-aunt, Angela, living in the mountains of Greece, drank a very small glass of her own red wine (no pesticides, etc.) with every single lunch, Her whole life after working the fields and taking care of the livestock in the morning. She died at 106 and was self-sufficient till 105. The red wine helped her digestion, blood flow and relaxed her a bit. She also swished the last bit of it around her mouth to clean her teeth after her meal. 😁 🍷
Sorry for writing so much. Anag
Thank you so much for your reply. Its very helpful and I love love love the story about your great aunt. When you say about the 'reason I have ET' I thought they didnt know what causes it. Could you say more please?
I had a lot of chronic low grade inflammation for decades: my mouth was absolutely full of amalgam fillings, eczema on my face, leaky gut, intolerances, massive stress because of my young daughter with rheumatism (almost became blind), I was letting go of my very successful opera career and my parent remember and dying and alone in Greece, I living in Austria. I was also on 200mcg of thyroid hormone! Basically my doctor put it to sleep so that my body doesn’t recognize it working and tries to kill it. My motor was running 1000mpn.
At the time my illness started, I was feeling surges of brain fog, dizziness, my eyes felt like they were swelling. It was surges of thrombocytes, thick blood that wouldn’t get to my capillaries in my eyes (caused low pressure glaucoma-which has now stopped getting worse) and the numbness and sometimes pain in my toes and fingers. I suffered a massive burnout.
There was havoc in my body. I can almost pinpoint the exact time when my illness started. 1/2 year before my mother died. Feb/March/April 2011. When my mother was terminal and I had incompetent support and was dealing with corrupt doctors in Greece. She passed Oct 2011 and then I had my dad to take care of. I have all my blood test from back then. When I looked at them, I found the beginning. Thrombos we’re going up on an average of 50-60K annually
Since changing to the AutoImmune paleo diet, fixing my leaky gut, amalgams out (I went through utter dementia for a year and kept detoxing the mercury during this time) and stopped eating food my body didn’t like. I have a whole new life. Toxins and Stress are huge factors in every illness. We have to work against the modern lifestyle. It’s robbing us of a happy, healthy life.
ncbi.nlm.nih.gov/pmc/articl... This is info regarding stress an platelets.
You have already heard this plenty, but the bottom line is that a reasonable level of alcohol consumption is OK. What matters is your overall attention to your health. When managing a chronic medical condition like ET, we have to take good care of our bodies to improve our odds and reduce the problems associated with secondary health issues. Reducing exposure to all toxins in the food/beverage chain and general environment is in our best interests.
All the best.
I heard wine is made from grapes and fruit is good for me that’s what a Chinese doctor said 😂 lol with plenty of water
Yes to red wine in particular. Resveratrol is good for you. Dark chocolate is loaded with antioxidants. Red wine + dark chocolate is very good for you! WIth plenty of water.
cool Hunter 😂
A personal favorite = Homemade Chocolate Mousse with shaved dark chocolate + a delicious red dessert wine. I am sure that combination cures many ills. If not, it sure does taste good!
sounds good 🍷
Hi queeniethequeen , , , lots of advice , all sound and relevant. . Something else I think worth considering and what I do quite a bit is dilute my drinks to kid myself I'm having a bigger drink than I really am. . . Which works well with my beers coz I just add diet lemonade to make a shandy so I get a couple out of a small bottle rather than drink 2 or 3 bottles. The slight fizz means that a couple of glasses is enough for me.
Sometimes instead of a glass of red wine I have a small measure of Port in a wine glass and top with diet lemonade.
Or you could maybe have a small measure of gin in a gin glass, top up with tonic and put some fruit in.
There's a number of ways you can take in less alcohol either by adding a mixer or making your drink more interesting and still feel you've had a drink.
Of course what some folk forget is that by adding lemonade, coke or mixers you are diluting the taste not the alcohol content so it's handy to have a measure.
I know what I'm saying isn't earth shattering but it's just an alternative approach so you can continue to enjoy a drink without worrying too much about its effect.
Cheers - Chris
Hi Chris & greetings! My first thought in reading your post was what really neat suggestions you have. Then I realized your post went pretty unnoticed & I was amazed!! That means folks are sufficiently confident of, & used to, you being around. I got so happy knowing that your health is sufficiently good (apparently) that your posting isn’t cause for great notice. You’re considered just like everyone else!!! That is something to celebrate, with one of your great suggestions. Stay well my friend. Katie
Haha yes Katie , I sometimes felt guilty about hijacking other folks posts replying to those asking of me so it's an astute observation.
My problem is and I've made no secret of it , I've always liked my beer and a little vino. Never spirits. Prior to my SCT I was drinking way above my recommended units then in August 15 stopped abruptly to ready myself for transplant.
I could easily lapse back into my old ways as in the past 18 months I've been able to enjoy a drink again. But it seems a really daft thing to do after all my life saving treatment. Whilst I occasionally have a few pints I mostly try to behave and drink my shandy and maybe have one bottle of ale.
Apparently yes I am reasonably well hough feel I'm aging fast for some reason though I'm young at heart.
Kind Regards Chris
I think so too and I drink water with my wine 🍷
I've never stopped drinking for my MPN. But it is very important to stay hydrated as dehydration is not good for us people with thick blood.
Hi queeniethequeen
I enjoy going out drinking, but realised I needed to cut down my intake , so I started drinking diet coke but found that I wasn’t enjoying myself like I would if drinking alcohol, so I started Drinking non alcohol cider or larger and found I felt part of the group again , and the add bonus is you can drink home 😀
With ET it’s of course important to live according to current knowledge about good vascular health. That means sticking to alchol limits that health authorities ageee on according to the research that has been done. Stay well hydrated and extra hydrated when drinking alcohol. With ET we also live normal or near-normal life spans so my philosophy is to live fairly healthy but also have fun and live life!
queenie, alcohol causes loss of magnesium. Magnesium prevents platelets from sticking together, It's critical for health. Search on "krispin magnesium" for more info
Thank you!!!! I needed that😁 I need to be able to explain to people. And myself
Having to justify oneself to others because you don’t want to have alcohol, or drink just a glass is stressful! I’ve been there too! 💗
This is interesting. I'm newly diagnosed with ET and exploring alcohol use (I love wine). Alcohol appears to be a magnesium diuretic, but it seems that the link between alcohol and magnesium deficiency is an issue for chronic alcohol over indulgers/alcoholics. It seems that moderate alcohol use would not lead to magnesium deficiency. Magnesium supplementation is generally a good idea and perhaps can counter-affect any minimal impact from alcohol?
Interested in more resources in this if there are any. I looked up "krispin magnesium" and didn't find anything definitive. Does this refer to a person?
Any further resources in this thread would be appreciated.
Cheers
Life is too short anyway. Enjoy it as you please and have no regrets. We can always be told do this, don't do that, but the fact is we are all different so what works for 1 might not work for you......
hi I still have my drinks I was on Hydrea for 2 years and now on Anagrelide when I drink I always have water with it it makes a big difference
Life is too short....try it and see how you feel..what works for one isn't the same for another.....I personally love a wine (bottle, lol!)
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