Hi there. I'm new here so bear with my questions. I had an aunt on my mother's side who had PV. She is no longer with us. Since early 2016 my annual labs have shown high platelets (range 140 to 400) starting at 417 in 2016, 423 in 2017, 430 in 2018, in March 2019 it was 449 and 2 weeks ago in April it was 474. I have also had high ferritin levels each year as well ranging from 316 up to 448 (range for females is 50 to 150). My (now fired) doctor totally ignored these results and my new doctor is the one who flagged this and referred me to a hematologist. I'm waiting for my f/u visit with the hematologist to get the results of the hereditary hemochromatosis genetic testing. The high ferritin indicates possible iron overload and I guess HH has to be ruled out. He also ran a complete workup looking at auto-immune and inflammatory conditions, infections, etc. My WBC and absolute neutrophil counts were elevated this last lab test, but there is no underlying infection that can be determined. All the other lab test he ran are all normal. I do not have a UTI or sinus infection and do not have any stomach or bowel issues that would indicate a bacterial issue.
I ended up having a complete thyroidectomy back in 2012 for suspected cancer but turns out it was Hashimoto's. For a few years after my thyroid was removed I was feeling great. Then in late 2015 I started feeling run down with overwhelming fatigue returning intermittently. I was going thru menopause and had chalked it up to that, but despite hormone replacement and hormone levels being optimal I was not feeling any better. Early this year I started feeling worse. I started experiencing muscle fatigue, itching all over at times especially at night when trying to get to sleep, the overwhelming brain fog type fatigue is almost daily, and joint pain. In late March I noticed lymph node discomfort that started in the submandibular area then moved to cervical neck area and next to the occipital area. I don't feel any swelling though. I also started running a low grade fever that comes and goes.
My hematologist was quite irritated and kept mumbling about my former doctor ignoring the abnormal test results for years. He just didn't understand why.
Thanks for reading my book....I'm just concerned and was hoping someone might have some insight.
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Shellbi
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Welcome. Looks like you have found a doctor who is good at going through the list of things to rule out. Unfortunately all I can do is offer support. Until you have a diagnosis it’s all just a waiting game. I was diagnosed in 2016 with PV. I had low iron levels. Sending you ehugs if needed.
You are doing all the right things - starting with getting competent medical advice and care. When you have the follow up with the hematologist, you'll have a better idea of what any underlying condition might be, and if so, if it can be treated. At least you, and hopefully your haematologist, have the possibility of an MPN on their radar. I too had a long series of raised platelet levels, when I finally had access to my records and looked at the blood counts over the years -but my GPs hadn't noticed. I was diagnosed with what turned out to be myelofibrosis three years ago, after a bone marrow biopsy and testing positive for JAK2 (and, it now seems, TET2 as well).
Would it have made any difference if I'd known several years earlier that I had an MPN ? it might not have made a great difference to my ultimate life expectancy , but knowing that I had a life limiting disease might well have altered some of the practical choices I made.
Keep in touch, and let us know how things work out.
Thank you. Interestingly enough, I had my dna raw data run thru Promethease and had 4 different SNP’s show homozygous for the JAK2 mutatation. Not sure exactly what that means and am planning on discussing this with the doctor at my next visit.
Wow...your story is very much like mine. My doctor also ignored my results for years until I called her out on it. My platelet count is in the same range as yours. I also have elevated WBC and neutrophils almost every time I've had labwork for the past 15 years. I also suffer from joint pain and low grade fevers off and on...mostly on. I don't have hemachromatosis though. I was iron deficient for some time. And I have an aunt with PV on my mothers side. I've had ET for 15 years. My platelets never have gone over 533k that I know of so it seems my ET is very slow moving. I'll be interested in knowing what you find out.
Wow! Very similar indeed. I’m beginning to think I don’t have Hemochromatosis as my 23andme results did not show that I have either of the 2 main HFE mutations. If you don’t mind me asking; how old were you at diagnosis? I’m 53.
Sounds like you are on the right track. Would expect that doc is checking for JAK2 mutation and possibly CALR and MPL. If you turn out JAK2+, be sure to have them do a JAK2 Mutation Quantitative Analysis. How many of the JAK2 alleles are mutated bears on your treatment if your are JAK2+. There is a rare form called Familial JAK2 that does occur. With a family hx of PV, it is worth being aware of. I am JAK2+ PV - first known in my family. Oddly, my daughter is also JAK2+, but is asymptomatic. My JAK2 burden = 25%, which has something to do with why my symptoms are so mild. Be ware that the JAK2 signaling system, in addition to increasing hematopoiesis, also can increase the production of inflammatory cytokines. Increased cytokine load is thought to be responsible for many of the secondary symptoms we all experience with MPNs. Hope you get some answers soon.
Hi Shelbie and welcome! I didn’t mind your “book” 😁. I was shocked to hear about the thyroid removal! Actually horrified! I have Hashimoto’s. I know that when Hashimotos starts, there are already major problems with our immune system and our bodies start playing havoc. After years of havoc and finally ending up with ET as well, I went to a holistic doctor, a great dietician in addition to my hemo. I’m on the AutoImmune Paleo diet, eat almost only organic, take supplements, keep a check on my minerals, metals, vitamins and hormones. I’m trying to not just keep them in the normal range, but to get them in optimal range.Im also getting all mercury fillings out, carefully. Within 18 months, I have rid myself of so many deficiencies, cholesterine, brain fog, incontinence, swollen lymph nodes, depression, food intolerances, eczema, the list goes on. My blood is also better. Energy better. Nerves better. Everyone, who I see with so many different things going on as you and myself, has a basic immune problem that conventional doctors have no idea about. They can only treat with drugs, which make us more sick. Try to find someone to get to the bottom of your body’s functional household and get your body back on track. I wish you all the best.
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