Loss of food taste.
Posted , 5 users are following.
Hi everyone.In one of my previews answers I explaned that i was diagnosed about a year ago with ET .I'm on hydroxyurea 500mg 15 pills per week.My platlet count has been lower to 430. My Dr. is very pleased with the progress. But in the last few month I have lost the taste for food.I can't taste salt, Vinagar or lemon. I red that Hydroxyurea can couse this condition .Is anyone have had this problem? I also red that the colesterol drug lovastatin that i 've been on for 8 years can also cause loss of food taste. In a few weeks I'm going for my compleete blood test and talk to my dr's. I love food and it's been hell. Very depressed .Hopefully this is a temporary condition and all will come back to normal.
Justin
0 likes, 12 replies
frances20411 justin23294
Posted
take a Chemo med. (which I have been told it is) so I restricted my diet (on my own) to NO red meats, and any other foods high in iron content. This brought my HCT
down just by doing just that plus an occasional blood letting (Phlebotomy) I live in America. My platelets have always been on the high side for over 40yrs and I
Only drink water and walk. for this problem plus a daily baby aspirin. My platelets are kept under 700. I know that this is Not ideal in the eyes of a physician but I feel my body will take care of itself...
in most cases. I do not recommend this approach to anyone it is only my experience...but I am comfortable with that. I too love food but a mild gall bladder discovery has limited my choices.
I have been battling platelets for over 40yrs. but I am able to function normally (except now with the gall bladder problem). My taste buds are normal except for the food choices I now must make. This message may not be of help for you except consider a diet change. I have never (in personal experience)
met a doctor who ever inquires about what their patient eats...diet Good luck!!.
justin23294 frances20411
Posted
Hi Frances. Thaks for your reply. My Hemotolagist tells me that the reason I have to lower my platlet count is because I had a blood In my lungs a few years ago and a few months later my platlets rose to 680 .He gave me a bone marrow test and the diagnose come back that I have Essential Thumbosyminia (ET) So I have to keep My platlets in check. He says . So I take 2.5 mg of Eliquis twice a day, a baby aspirin in the morning and this dredfull Hydruxyurea . There is no other drug avalable. He says that the chances of oneother blood clot are minimal.I hope he is right. I also live in America and the Hackansack Merdian hopspitals that my hemotolagist blongs have partned with Sloan Kettering and hopfully they will find a cure for this rare blood desorder. Now I hope we can find out what's causing the food tasting loss.
?PS at my age I should not be complaning much . I just turn 81.
frances20411 justin23294
Posted
via this site for your problem. I live in California and I am older than you
by 4yrs. I feel at this stage in the game of life...I am just going to do my best and hope that God helps me thru. I am from NY originally and am
aware of the hospitals you have mention. Again Good luck fellow Senior.
frances20411
Posted
can be confused as either...
justin23294 frances20411
Posted
Justin.
peter98873 justin23294
Posted
I took larger Hydroxycarbamide (Urea) doses over a longer period than you mention but never did it affect my diet. There are some odd symptoms associated with statins
but again, my diet was not affected although I took statins for a number of years. I no longer take them due to some of the uncomfortable symptoms I had to cope with, but intake of food was never a problem. I suggest you explain your symptoms to your doctor when you next visit and request his opinion. I am not aware of any other patient on this site who has mentioned similar symptoms to those you describe.
Good luck.
Peter.
justin23294 peter98873
Posted
Thanks Peter.I'm going for my compleet blootest this week and follow up with my family dr. and my hemotolagist. Hopfully they will have an answer.
peter98873 justin23294
Posted
Hi Justin.
There are other drug treatments available to doctors for your disorder but Hydroxycarbamide is recognised as a first line of treatment and very often is all that is needed. The symptoms associated with this drug are quite often different in many patients and it should be remembered that we are each different in our biological make-up, hence the differences associated with this treatment. Some of the newer treatments used by the doctors to treat PV are still in the embryo stages of research and accordingly quite expensive to supply if they are released for general usage. In your situation I would suggest that you rely upon your haematologist' advice, stay as active as possible, eat healthily, and get on with your life as normally as possible. These type of diseases are referred to as MPN's and in many cases begin with a defective stem cell which mutates into other similar diseases that are associated with these MPN's. There is much you can learn on this subject from others on this site or on regular medical sites published on the internet.
You will note from the variety of answers you receive on this site that it is a very complicated subject . Initially I was diagnosed with PV many years ago and it has slowly progressed to ET and now MF. I have found my haematoilogists very practical and considerate and have no hesitation in seeking their advice when necessary. Try to think things through as you go along and treat your problems if and when they arise. Your forthcoming blood tests is the correct place to begin. Good luck.
peter.
justin23294 peter98873
Posted
Thanks Peter. it's very comforting to me that I'm not alone.
?Justin
Orseblue justin23294
Posted
Hello, I have also got a blood clot, mine is in the portal vein.
My doctor got me on warfarin, it's a pain having to do irn tests constantly.
Every 8 weeks I have 500ml venesection. This has worked for me for a dew years.
My iron reading is now very low so next step will be hydroxyurea.
This does not answer your question just suggesting there are other treatments involving bloodclots.
Hope all goes well at your next appointment and your DR can help you. / Anna
peter98873 Orseblue
Posted
Your comments show just how variable PV can be and the the treatments to control it. It seems your doctor is well versed here and has an interest in your position. If you are prescribed Hydroxycarbamide (Urea) do let your doctor know if you get other symptoms which can be related to your treatment. Some patients semingly take this drug without too much difficulty, whilst others are more deeply affected. One should keep aware of the longer term usage here on higher doses, but it is all controllable. Sorry to read you suffer pain. Mention this to your doctor who can give you pain killing drugs to treat the problem. Hope you are not suffering in
silence. Best wishes for the future.
Peter.
Orseblue peter98873
Posted