I am in the middle of a diagnosis and would really love some advice as im so stressed.
My GP said that my platlets are higher than normal (aparently since 2020, but I was only told they were high this past January). She suspected ET so ordered the Jak2 test which came back positive. I have fatigue, itching am lightheaded and have a rash that comes and goes. Im absolutely exhausted. She thought I may have lupus and tested for every auto immune deseas imaginable which all came back negative. She wants to send me to a rhumatologist as she doesnt think I have a blood issue. Wouldnt prolonged high platlets and positive Jak2 indicate a blood issue? Should I be pushing to see a heamatologist?
Hi @MiaGrace a great big welcome to our forum I am so glad that you have found us.
You, must be so stressed with the not knowing and feeling fatigued.
I am certainly not a medical person this is just my personal experience.
GP’s often go through a series of opinions and tests to rule things out and come to a diagnosis.
Did you ask why they were sending you to a rheumatologist?
I am under a rheumatologist and haematologist for different conditions.
It is up to you but you you will see in the referral letter, if you get a copy, what you are being referred for, perhaps the itching and rash.
If a rheumatology condition gets ruled out then you can ask for a referral to a haematologist.
Don’t be afraid of writing down all your questions and make sure you ask them all at your appointments.
You have entered into a world of forever waiting on tests and appointments, the waiting and not knowing are the worst feelings and perhaps make stress and fatigue worse.
I will copy this to @GemmaBloodCancerUK for you and if you want to talk to someone the Blood Cancer Support Line is there for you.
Be kind to yourself,
Please keep posting, perhaps stress makes fatigue worse, but stress is also so natural.
Thank you so much for all of the information! I have been reading through some of the other posts and everyone on this forum seems so lovely.
I am currently living in Australia so I dont think I can use the help line. However I did mange to see a different GP this morning who after looking at my blood tests has given me a referal to see a heamatologist. The GP said to hold off on seeing the rheumatologist for the moment.
The referal says that ive had thrombocytosis since 2017 (thats news to me!) JAK 2 mutation. Plts slowly increasing.
I spoke to the heamatolgists assistant on the phone and she said the dr will want to do his own blood tests. She will get back to me with an appointment date.
I feel mentaly soooo much better now that things are moving forward.
So I have been booked in to see the heamatologist tomorrow afternoon. He has a good reputation so im hoping to be able to get to the bottom of whats going on with me.
Hi MiaGrace,
I’m in the UK and was originally diagnosed with ET just over 2 years ago, just as covid started to rear it’s ugly head. I only found out through routine blood tests, it still took a few months to get a firm diagnosis. I hope you’re on the right road to getting a diagnosis and the treatment you require. I have recently started taking Hydroxycarbamide, to reduce my platelet levels and starting to feel a little more like my old self. Good luck and look forward to hearing how you get on.
Dear @MiaGrace, welcome to the forum and I am really glad to hear that you are finding the support you need. Although you are in Australia we can still communicate via the Forum and I can also find you some resources locally if you need? I am sure the team you are seeing will help you but do let me know if you need anything?
It must be a relief that things are moving forward now.
Wishing you well and do keep in touch.
Kind regards
Gemma
Hi Taz
That must have been so scary being diagnosed at the beginning of Covid. You are very strong.
How are you finding the Hydroxy? I read on the internet that Aspirin is often used as well. I cant take aspirin as it does a real number on my stomach.
Im feeling quite calm at the moment as I just went for a long walk. My appointment is at 3:30pm so im just going to try and relax until then.
Im not really sure what to expect or what questions to ask the specilist at this point but he has wonderful patient reviews so that makes me feel not as nervous.
Good morning MiaGrace,
Hope you’re appointment went well,
walking is a great therapy, I walk loads with my dogs (the dogs are great therapy too). I also struggle with aspirin, I do take 1 a day but feel I should take out shares in Renie. Look forward to hearing from you soon, how you got on.
Im home now and so drained and feeling numb.
The specialist said I have ET. He was talking about it in stages 1 & 2. He thinks I have stage 2 as im JAK2 positive and because of the symptoms im experiencing. I have a BMB booked for next Friday then im booked to see the specialist the Friday after.
He said he also thinks that I have a conective tissue disorder so has ordered more blood tests.
He also loged on to my past blood test acount and saw that in 2017 I was diagnosed with something called Prothrombin mutation. I never knew! He said it is very dangerous. Im not even going to google it at the moment as I dont think I can take anymore bad news!
The good news though is that the specialist was so lovely and that I got to see him so quickly. He works out of a private hospital but bulk bills (Australian term meaning that medicare covers everything as he doesnt over charge for his fee). This is almost unheard of here. I realise how lucky I am for that.
I wasnt very brave im afraid. I burst in to tears as soon as he started talking about ET. Then cried all the way home in the car.
Hi @MiaGrace . I think you have a lot to take in and i am not surprised that you cried. Any diagnosis is a lot to take in and everyone on here has gone through it. Sounds like you have a good doctor and I am sure all will become clear over the next few days/weeks.
Do be careful where you google and only look at the proper health sites as you could end up worrying about something unnecessarily. I would imagine the doctor will provide details and direct you to websites that can be trusted.
All the best
x
Oh @MiaGrace, any diagnosis Is a shock and also all the medical terminology is so overwhelming and confusing.
I am so, so impressed that you took in so much information.
It is not about being brave, the tears are a release so natural with shock and I would have got through a box of tissues, at least.
I am so glad that the specialist was so lovely, yes, it must make such a difference.
Now is the time to really look after yourself and be kind to yourself.
Please keep posting.
Hi Erica
I know how you feel. So frustrated and anxious.
I had very similar symptoms: chest tightness, at times chest pain, difficulty breathing, feeling exhausted…. All blood work normal, cardiac tests normal, respirologist sent me for a CT scan which showed swollen lymph nodes in my chest ….
A subsequent PET scan and lymph node biopsy diagnosed stage 3 Non Hodgkin’s Lymphoma. I’m in the Watch & Wait program. Still not feeling the best but at least I know why.
Hi @Margie great to hear from you.
As I read your similar symptoms, I was really there with you with the feelings.
There is information on the Blood Cancer UK website on Non Hodgkin’s Lymphoma and watch and wait and the Blood Cancer UK support line is there for you if you would like to talk to someone. Of course we on our forum are also here to support you and to share our experiences
Look after yourself and please keep posting…
Hi MiaGrace, I get how you’re feeling, so worrying, with a lot to take in. Good to hear you can get a health care plan, it’s times like now I really appreciate our NHS. I hope you’re other tests go okay and you’re soon on the right treatment to help you feel better x
Hi
I had high platelets and JAK2. Nobody committed themselves but I was treated as if ET. I was assigned to a haematologist who incidentally considered the possibility of lupus but gave me hydroxycarbamide. It lowered both the platelets and the red cells. If I had JAK2 I would certainly want to see a haematologist.
Jumbo4
Hello @Margie, so sorry to hear that you have been feeling well and that you have a new diagnosis. As @Erica said we do have information on our webpages but do give us a call if you would like to talk through the information or need any other support How to contact Blood Cancer UK | Blood Cancer UK. Kind regards Gemma