Hospital blood test and gp blood test

[Robeets_33]

I have blood tests every 3 months at QE, they only seem to test for platelets and certain tests. Had a 12 month general blood test at GP last month, they have sent my results to consultant who rang me today to say uric acid higher than normal which is a side effect of MF, I am surprised that I wasn't tested for this at my hospital blood tests. They will send a note to gp that if I suffer with an episode of gout to prescribe medication but didnt want to overload me on medication

[Cat1001954]

Hi my consultant always gets urea and electrolytes and liver function blood tests And cbc every 3months

[Plate in reply to Cat1001954]

Yes, I have the done. I think a full blood panel every time I go is for preventative medicine and watching trends of some components of the blood. HU is not a kind drug to the rest of the organs like liver and kidneys.

We must advocate for ourselves to get the health care we need!

[Cat1001954]

I’m going tomoro for bloods as my consultant appointment next week

[Robeets_33 in reply to Cat1001954]

Hope all well, I am due blood tests at hospital tomorrow and telephone consultation on Thursday but consultant double booked, I explained I haven't had blood test until tomorrow, she will call me Friday if any problems but if none will send a letter

[Cat1001954]

hope you get on ok

[Robeets_33 in reply to Cat1001954]

Thank you. I may ask why they only do certain tests, and not all the relevant general tests required

[Cat1001954]

I have quite a few things tested each time so ask them to do yours good luck

[Robeets_33 in reply to Cat1001954]

Definitely will do, thanks 😊

[Cat1001954 in reply to Robeets_33]

Bye if you don’t ask you won’t know good luck x

[hunter5582]

For any patient with a MPN there is more to monitoring than a CBC. It will normally also include a CMP and other tests like uric acid. When taking Pegasys (or other meds) it is important to monitor liver and kidney function. If your uric acid levels are elevated, you would also want to know what your other kidney function numbers look like. When there is an anomaly on kidney numbers detected, it is also common to check your kidney function numbers more often than every three months.

Suggest that obtain all of your labs for the last year. You can review the trend lines and compare to when you initiated or changed dose on any medications. This will allow you to have an informed discussion with your hematologist. I am able to easily obtain a summary of all of my labs that shows all of my labs in columns for as far back as i request. Nearly every portal I use allows me to do this myself. I can also request it from providers whenever I wish.

A while back I had some of my kidney numbers a bit off. After nephrology assessment all was determined to be OK. I just needed to make a more concerted effort to drink more water. I upped my water intake and the kidney numbers returned to normal. This was important since I was starting on Pegasys at the time. I drink approx 2 liters (64oz+) of water per day.

Wishing you all the best.

[Robeets_33 in reply to hunter5582]

Thank you so much. I will ask after I have had my blood test tomorrow, she said if I had a flare up of gout, which was when my GP tested, as i had a sore middle toe some weeks ago, then to contact my GP and she would prescribe a tablet a day, but didn't want to overload on medication. My platelets have reduced to 525 so I was hoping to reduce the Pegasys from 90mg per week but she said not.

[hunter5582]

I certainly understand not wanting to add meds. One of the more common gout meds is Allopurinol, which a number of people on this forum take. They can give the best feedback should that be needed.

I have also had sore toes, but it was due to the JAK2 PV directly. My doc calls it "PV toes." Fortunately it resolved.

Suggest you ask for all of your lab results while you are in getting your blood test tomorrow, If they can't access them, they can likely tell you where to get them.

All the best.

[Jean24]

My Husband under the QE and they do only certain blood tests, it was only he was put forward for a trial that they realized he had liver problem due to too much iron in his blood. They took about 11 tubes of blood for all the tests that had to be carried out. Now they test for that when he's got his consultant appointment. They test for what you are under the hospital for. Hope that helps.

[Robeets_33 in reply to Jean24]

Thanks Jean, that is helpful, I have MF, I will ask for a print out of the results. It seems strange but they do not send my blood results to my GP.

Thanks again. Jude

[ciye in reply to Robeets_33]

My local hospital use an app that lets you see all of your records including blood results. The nhs app has all my gp blood tests results on there, I just asked surgery to ok it.

[Robeets_33 in reply to ciye]

Thank you, I will definitely look into this.