Going crazy!

[gr8kids]

Looking for support please 🙏 I'm 45, had hysterectomy 2016 due to endometriosis, so 6 months ago when i started feeling rubbish, i thought it was just the menopause kicking my ass again. I usually walk a few miles a day and keep physically busy on our farm. It started off with me getting tired quickly when being active and got worse from there. I have fatigue, muscle weakness, memory fuzzy and a few headaches for no reason. Been to doctors and had tests done for blood, urine and faeces. I see the doctor on Tuesday. In the mean time, I've gone through my results and scared myself silly. What's worried me the most is my hemoglobin 16,7 and hematocrit is 50%. So I've done the usual, and checked Google, that's come with possible Polycythemia. That's serious illness, if that was the case then i would surely be losing weight and that isn't happening. I can't unread any of that now and it's driving me crazy 😔

[Aime]

Hi, please don’t get so upset until you find out exactly what you have got as a large variety of things can affect your blood counts. The best trustworthy information can be found on the MPN voice website. In the meantime you need to be referred to a haematologist who specialises in PV to discover if that is the reason for your blood counts. We are individuals in respect of conditions we have and meds we take but my gp needed 3 months of blood tests before I was referred.

If you had PV, it is not a death sentence. There are many folk on this forum who have had it for years and are still alive and kicking. Keep in touch, you will get plenty of support from the lovely people on this forum. Kindest regards Aime x😻

[gr8kids in reply to Aime]

Thank you Aime. It's so tough being ok and not overthinking things when i feel rubbish. I don't want to feel like this anymore.

[Aime in reply to gr8kids]

6 months isn’t long for your body to adjust post hysterectomy either but keep in touch. X Aime 😻

[gr8kids in reply to Aime]

I had a hysterectomy in 2016

[Eadaoin in reply to Aime]

It took me a year to fully recover from a hysterectomy. Be patient with your body. Best wishes.

[gr8kids in reply to Eadaoin]

I had the hysterectomy in 2016 as i said in my post.

[Aime in reply to gr8kids]

I’m in a quandary myself again as I was diagnosed with PV in 2012, rediagnosed over 2 years ago with idiopathic erythrocytosis which just meant I still had too many red blood cells, cause unknown.

Since then, my hematocrit and ferritin have remained low without any venesections and my NHS haematologist says I shouldn’t be concerned despite having a load of symptoms and my private haematologist who I saw over 2 years ago says he’s not so happy and to ask my gp to do more blood tests. I spoke to my gp today and he’s asking for a raft of blood tests plus urinalysis over 24 hours as he wants to rule out anything nasty. My thoughts were - here we go again, another curved ball but will just have to wait until blood tests are done next wed and for all results, hopefully by the end of next week. Determined to follow my own advice - there’s no point wasting energy worrying about things which may never be! 🤣🤣kindest regards Aime xx😻😻

[gr8kids in reply to Aime]

I hope your results aren't bad and you start feeling better soon x

[hunter5582 in reply to Aime]

The don't worry until you need to plan is a good plan. It actually sound likes the doc is just being thorough and ruling out things that at this point are a bit unlikely. Must say I am a bit surprised they did not do the 24 hour urine screen some time ago given your presentation. A few months ago I had great fun with blood tests. Had labs run on orders from both my Endocrinologist and Integrative Med doc at the same time. It was almost like having a therapeutic phlebotomy! I sent the results to the MPN Specialist. He wrote back "Wow - that is a lot of blood work!" 😄😏

Hope you get more clarity from the new lab work.

[Aime in reply to hunter5582]

Thank you.x😻😻

[mark382]

The unknown is the worst part for anyone. Your brain and emotions go into overdrive. Its only national as we are human with human emotions. Polycythaemia isn't that bad, I've had it fir 12 years and other than fatigue hitting me from no where, I lived a near normal life. Mine is managed by aspirin and venesections. I intend living a normal life span and as someone once said I'm more likley to die with it than from it. So, yes you will be anxious about not knowing, but if Polycythaemia, don't worry. Lots of us have it and will give you support and benefit of our experience. Take care and keep safe.

[gr8kids in reply to mark382]

Thank you Mark for your encouraging words.

[hunter5582]

Welcome to the forum. Glad you found your way here.

At this point, you are going to have to wait for a diagnostic workup to determine what is going on. It may start with a check for the JAK2 mutation, which 95% of people with PV have. If you are positive for a MPN, then it is very important to see a MPN Specialist as most hematologists only rarely treat MPNs. Here is a list just in case you need it.

mpnforum.com/list-hem./

I was diagnosed with a MPN about 30 years ago. It presented as ET initially. About 7 years ago it progressed to PV. I have lived a rich life and continue to do so at age 65. I plan to continue to do so for some time to come. Even if you do turn out to have PV, know that many of us are able to manage this disease. Yes, PV can be serious, but there are treatment options and these options have improved greatly. The treatment options continue to evolve and improve.

Please stay in touch and let us know what you find out. Meanwhile hang in there.

[gr8kids in reply to hunter5582]

Thank you. I will definitely keep you updated either way. Sometimes people can overthink things because of fear of being ill. Having a supportive ear to listen to the worries and soothe, is gratefully received 🙏