As if having cirhossis wasn't bad enough, I seem to be gaining a new illness every month. Recently my face dropped on left side along with chronic pains in my left foot, elbow and ear. Turned out to be bells palsy and periphial neuropathy which I have to now take pregablin tablets for life. The latest worry which I nèd advice on is my platelets. They have always been low but last month had a blood test and was told they were low and to have another test 4 weeks later. Learned that normal is 150 plus, and my first test came back at 60, then today I phoned up for latest result and its 51.
Do you get offered a platelet transfusion? My dentist won't do my teeth for risk of bleeding. Have a doctor's appt Monday and have left a message for my hepatologist but has anyone else had this and what treatment is there. I get tired easily but the worry is draining.
Hope your all okay. Thanks for reading my rambling
Julie x
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jules45
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My hubbies platelets were down at 22 at one point, he certainly needed a platelet transfusion before a liver biopsy but never had them any other time. We had to tell hubbies dentist his INR (clotting time) but it made no difference, he managed to do extractions etc. when they needed done.
Thanks Katie. I'm glad of your advice. Supposed to be having endoscopy and possible banding on 20th. Can't believe my hepatologist is doing it. Normally I'm farmed out to a spare gastro. It might not go ahead now (wishful thinking)
Try not to worry too much about the platelets. Mine have been around 30-40-50 mark for 5 years. If I need dental work it is done in Kings, with a platelet transfusion before hand, the platelets are a clotting agent and only last 24 hours before they die off, so there's no point in having transfusions unless you need surgery. It is good that they're keeping an eye on the readings, perhaps they hope it's a temporary thing, but in the big picture with everything else you have been going through it is not one of the biggest things to worry about, just be careful not to cut yourself and make sure you're not taking warfarin or aspirin which thin the blood. Apologies if I'm stating the obvious, but when I found out I knew absolutely nothing and was very scared too.
Thanks for the hug x. There's just been a decline for whatever reason. Living in the middle of nowhere makes the situation more worrying if I did cut myself so I don't recycle tin cans and watch using a knife. Mine have been on the low side for a few years but now they just keep dropping. Would it explain tiredness? I wouldn't mind a transfusion to see if it improves my energy
i know that the do give platelet transfusions as i had cryoglobulinemia a very rare disorder which was a secondary illness to hep c and if my platelets didnt improve i was getting one but when i started the hep c treatment the cryoglobulinemia dissapeared. i wish you well. my daughter had bells palsy she thought it was a stroke at the time. she has recovered now. i wish you all the very best.love grace xoxo.
Hi Grace, the bells palsy gave me a fright. I've noticed a significant weakness on my left side. The neuropathy feels like someone is stabbing you with stinging nettles. Tablets work at least. The platelet issue is one that I think about like "what happens if they drop to nothing".? I will see the doctor on Monday and see what she says and post an update
all the very best to you i looked at your lovely picture and like so many on here you are so young. your flowers are so lovely. and you look lovely too. i do hope that your recover. all my blessing and love. grace xoxo 🤗
Hello dear. I too have some neuropathy, it began in 2004 with the Ribavarin and Interferon for a year, shots. I am not yet on any medication for it. I fear a bit those signs of possible Palsey but its known we can end up developing Parkinson's disease with cirrhosis as badly as I have it. I do have low Platelets. No they will not inject them. Mine have dropped to 11 and for quite awhile they were 18. I have survived one major bleed out. I got thru it alone. After that I got my Platelets up to 70 but they linger around there. I just do not much worry about it. The liver cannot recieve them and they are thrown off into our Spleen which causes it to swell but can create some doozies of other major problems with the Spleen. I just keep cycling. I am often flying downhill in heavy traffic at 15, 25, even 35 miles per hour on a race bike, it weighs nothing, I weigh nothing, the tires are like thin as pencil points. I think there is one food that builds Platelets. I am sure its in my diet but cannot recall which food it is. I will find out and get back to you with that info. I think its eggs but let me check, eggs for sure are the only food that creates Albuium. So I eat them. Orange juice creates bile but it should be organic or fresh squeezed. I could not live without OJ as I cannot take Lacutose, I really cannot take every day even the lowest amount of Spironolacatone. They create potassium/sodium imbalance in my brain and I could go into black out or coma, thats what hppened with my bleed out. I am really sorry for how much this will weigh on you. We have to soldier on, we have to be able to buck up on demand. Jeez, I feel like its all I have in my life, I feel like every second I am monitoring my health. You have already been thru far more, I hope you find some peace, maybe walking will grant you peace. Bless you, you are a great gal.
Hi, thank you for such a thoughtful reply. I've learned a lot today since my post. I do feel like there's something going on with the left side of my body. I feel like my body is trying to have a stroke some days, mainly losing balance so my right leg is having to compensate for lack of sensation in left. My face as well but was told bells palsy then I thought"why have I got that?". I do soldier on breaking the pain barrier especially when I'm having liver cramp and have to go with it till it passes. I take Spironolactone and furosimide both duiretics. With ref the spleen, my tummy is big due to enlarged spleen and liver.
How did you get your platelets up to 70 and how did you feel when they were 11 to 18. Did your Gp call you in for a chat? Parkinson's seems realistic.
Most days I bury my head in the sand but certain symptoms give me a reminder.
I read about a condition called Thrombocytopenia ages ago. Can't remember if it still applies to me or not. I'll have to look it up again.
We are all brave on here and I'm grateful for the time and thought my replies bring.
I am concerned about your losing your balance. When were your last blood labs. That sounds like what happens to me when my potassium and sodium levels are off kilter. It seems I heard you say you are being banded again soon. I wonder if your platelets are lower due to some bleeding. I have it internally at times because I see how black my stools are. My platelet level went up a little after I killed the virus. Wow, I think of you as being the biggest soldier. I am very aware of the things I have read here you must come to terms with. I sure hope I did not cause you for one second to feel like you were not soldiering on all along. I am not so sure I could handle as much as you do and you handle it with such humility and grace.
Thanks for that, your reply was very useful. My full bloòds didn't pick up an issue with electrolytes. Just platelets. You and everyone else soldier on and I bury my head in the sand. At least I'm seeing doctor on Monday to see what she says. Probably nothing but I'll post an update titled "update" so you know it's me
Here are the top 10 ways to increase a low platelet count naturally.
1. Papaya
Both the papaya fruit and its leaves can help increase a low platelet count within just a few days. In 2009, researchers at the Asian Institute of Science and Technology in Malaysia found that papaya leaf juice can increase the platelet count of people diagnosed with dengue fever.
Eat ripe papaya or drink a glass of papaya juice with a little lemon juice 2 or 3 times daily.
You can also pound a few papaya leaves without the stalk using a pestle and mortar to extract the juice. Drink 2 tablespoons of this bitter juice 2 times a day.
2. Wheatgrass
According to a 2011 study published in International Journal of Universal Pharmacy and Life Sciences, wheatgrass can be beneficial in increasing platelet count.
In fact, it can produce significant increases in hemoglobin, red blood cell, total white blood cell and differential white blood cell counts. This happens because wheatgrass is high in chlorophyll with a molecular structure almost identical to the hemoglobin molecule in human blood.
Simply drink ½ cup of wheatgrass juice mixed with a little lemon juice daily.
3. Pumpkin
Pumpkin is another helpful food to improve your low platelet count. It is rich in vitamin A that helps support proper platelet development. It also regulates the proteins produced in the cells, which is important to raise the platelet level.
Thankyou so much for that information grace, I have written it down. anne x x x
hi Julie im matt just wanted to say hi and i loved reading your post ,,i also suffer with cirrhosis,,and im learning alot on here ,,im being seen to and will have my second appt with hep doc 7th nov ,,,,i was very keen to read about your neuropathy because that is something i went through in the early stages ,,by my own diagnosis ,,and i still suffer bouts from time to time ,,,im booked in to see doc on the 18th so ill make it known i want to try some meds to numb the feelings ,,im fine right now but early days i could have lost it totally ,,im so glad your getting on ok ,,,this is a wonderful place to chat on ,,and the advice is second to none from fellow sufferers who i class as friends now ,,,,,also btw when i was approx 17/18 i had bells palsy and it lasted for approx 2 weeks and was the oddest thing ,,,,,i was talking like Joseph Merrick,,,,so if its not cleared up as yet ,,it will ok be positive ,,,anyway you take care and have a good wknd all the best Matt
Hi Matt, I agree with youŕ comment about the people on here. Whatever the problem there's always someone who takes the time to offer support., I've been ill for nearly 7 years, twiçe having liver failure. The tablet for neuropathy is called pregablin in case you get it again. You too have a nice weekend.
Sorry to hear about the Bell's palsy.. a colleague of mine just happened to him but just facial. He's on steroids which screws up the sleep patterns. Any idea of grade? Is it improving?
Hi, thanks for reply. The bells palsy lasted about a week but the neuropathy is for ever. Had an attack on left foot this morning and took 2 tablets straight away and I was fine
Yeah hi julie my names bri ive got hepc cirrhosis enlarged sleen p h t etc but the thing I was interested in was rhe neuropathy as ive had that on my left side my head face mainly for last 20 odd years and it is like a nettle sting feeling bang on that is do u get it affected your eye as well as I get strange kaleidoscope sensation in my left eye area then it tends to mess with the vision for about an hour all the bestbri
Hi, I saw the doctor after putting up with agonising pain and he took no notice at first. I went back, saw a lady doctor who ruled out diabetics and put me on pregablin tablets which stop the attack straight away. Hope this helps
Hi jules my husband has neuropathic pain in his arm as a result of shingles has had it for six years at first he was screaming with pain literally was referred to a pain clinic he takes pregablin and slow release tramadol, but he was also trialled on a new chilli patch specifically for neuropathy its called qutenza the idea is it kills off the nerves enabling them to regrow unfortunately along with all his other illnesses he had a heart attack so treatment had to be stopped not sure where you live but if in uk might be worth enquiring about them they really do help with pain karen x
If you live in wales then why dont you ask to be referred to a pain clinic george goes to the walton neurology centre that where the pain clinic is based in liverpool. Karen x
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