Hi! I’ve been sick for going on 3 months. One infection after another. As well as feeling worn down all the time. I’ve been having more dizzy spells than usual. And have been weak. I finally got my doctor to refer me to a hematologist. Because I was concerned about my blood results being high. I have been journaling in my health journal about what’s been going on.
Here is one from January 25, 2025: On the 13th of January 2025, I went in to see my doctor due to dizziness, fatigue, and feeling really weak over the weekend. My doctor ordered a work-up. I found out through the patient portal that my white blood cells were high at 11.6 10E3/ul and red blood cells were high at 5.65 x10E6/ul along with hemoglobin at 16.9 g/dl and hematocrit being at 49.2%. Platelets at 442 x10E3/ul, this has been raising slowly over the last 13 months with it only being at 256 x10E3/ul in December of 2023. My vitamin D levels were low at 24.4 ng/mL. Everything else for the CMP14+CBC/D/PLT+TSH looked fine. I have never had numbers this high before. I have been searching for answers for 8 years now trying to figure out why I get random fevers and what seems like infection after infection as well as itching to the point I break skin. With it only seeming to get worse as time goes on. It doesn’t matter how much lotion I use. It also burns when I use it. I’m so itchy. Including at night, which wakes me up. Especially my lower legs above where the bones are as well as other places. I also have my ceiling fan on and an oscillating fan to try and keep me cool at night from sweating so much. I usually sleep with a lightweight blanket. I used to complain a lot even with the thermostat turned up just one degree during the night. (I live in a habilitation home with 4 others.) So during mid-fall I resorted to sleeping with my window open till it got too cold to do so. And I still got sweaty. And I have noticed more sweating during the day even though it’s winter and freezing. I feel very tired even though I get 8-9 hours of sleep at night. I get weak and dizzy spells more so than I used to. And I can’t do my regular activities that I really enjoy such as church, Celebrate Recovery, and sewing a quilt because I get wiped out so quickly. And going to Walmart or other shopping places can be exhausting. I do have bone pain and an overall discomfort and just feel weird, I can’t really describe the feeling. My hands start feeling numb and tingly whenever I’m on the phone with someone. I don’t have an appetite anymore, as I only get hungry once a day now. And I force myself to try and eat. I’m getting at most 500 to 1100 calories a day. 1100 calories is very rare the last few weeks, with it happening only once. I get full rather quickly. I have lost weight unintentionally. I get mild headaches every day. One day this past week was more severe than usual.
I have been throwing up every-time now when I brush my teeth. I was recently diagnosed with thrush. And am taking liquid nystatin for it which doesn’t seem to be helping.
Since January 13th my labs have gone back down to the “normal” range. But I have been having off and on unexplained fevers. And just plain don’t feel well! I still have no appetite. I was referred (after persuading my doctor, she only looked at the white blood cells and basically swept all the other high results under the rug) to a hematologist which is on March 12. I’m hoping that I get clarity and answers on why I keep having these spells!
Hello there @FriendofJesus777, welcome to the forum. I’m sorry to read of your concerns about Myeloproliferative neoplasms (MPN) and those infections you’ve been tolerating over the last few months.
I’m guessing from your spelling and terminology that you might be based in the US. I’m sure you know healthcare is pretty different between the UK and US, as is my experience as a Brit now living in the US.
It sounds like from what you’ve shared that your blood tests have shown normal levels again and you’ve got an appointment soon with a haematologist to check over your concerns. Maybe your worrying test results were caused by those ongoing infections? I’d be tempted to ask your GP/PCP what could be causing those infections and fevers.
Forum members understandably can’t offer medical advice nor check test results as we’re all individuals with our own unique health histories and really need our own doctors to explain test results and symptoms.
Perhaps you’ve heard of LLS based in the US? They’re the nearest equivalent to Blood Cancer UK so you might find more relevant information there.
Do please let us know how it goes seeing a haematologist next month. Hopefully they’ll be able to tell you that you don’t need to worry about blood cancers like Myeloproliferative neoplasms (MPN), I’ll keep my fingers crossed for you @FriendofJesus777.
Hi @FriendofJesus777 a great big welcome to our UK forum.
I certainly cannot better @Duncan insightful response.
Perhaps it might help you for your March 12th appointment to write a clear diary of events and all your fears, questions and practicalities.
I find it helps me at appointments.
Please do let us know how you get on and in between do nice things to divert your mind.
Look after yourself and take care
Definitely write down all those questions ready for you appointment in March. Is there anybody you can speak to in the meantime if you are worried?