A little lost

[inlimbo123]

Hi all,

A few months ago my haematologist adding at the end of a letter to my GP that I am “likely to represent a mild early myeloproliferative disorder.”

Since then, I have seen a private haematologist that echoed his conclusions after doing her own set of tests.

Yesterday was the first time I went back to see the original NHS haematologist who is now saying he believes its not a myeloproliferative neoplasm (MPN), but a genetic disorder (G6PD), however, the private haematologist already knew I had the disorder and ruled that out as a reason for my high platelets and other blood test results. In honesty, I felt fobbed off by the NHS haematologist as if he just wanted me off his caseload.

After the appointment he ordered another set of blood tests that show my platelets were on the rise again (556) and my RBC has dropped below norm to 3.68. This, along with my previous set of results is not explained away by my G6PD so I wanted to ask what the best thing to do is in this instance? My kappa light chains and IG A and M are high, as well as an increased polyclonal gamma globulin which is all linked to myeloma however, the dr seems unbothered but also won’t explain why, perhaps because I am only 28 and do not have the JAK2 gene or any other genetic marker?

I am at a complete loss and my daughter has just begun her 6 week break, I have no energy and all of this is just worrying me to no end. If you have read this far thank you, if you have any advice please let me know!

[Mostew]

I see you are new to the site and just want to say hello. I'm sure you will get some good advice.I can't help unfortunately, but would say change your Heamatoligost . they s hould discuss concerns with you not just write to Gp.

[inlimbo123 in reply to Mostew]

Thanks for your warm welcome, I appreciate it. I agree that it was a really harsh way to find out so I will look into getting a new haematologist.

[EPguy]

This part of your condition:

"My kappa light chains and IG A and M are high, as well as an increased polyclonal gamma globulin "

could be autoimmune related. I had this sort of set checked in that context. Has your Dr ruled that out and/or have you been checked by a rheumatologist?

On the low RBC, Hemolytic anemia comes up with your G6PD:

"Hemolytic anemia is a disorder in which red blood cells are destroyed faster than they can be made. The destruction of red blood cells is called hemolysis"

hopkinsmedicine.org/health/...

I have no knowledge to judge this but for your Dr to rule it out with your low RBC result is curious.

[inlimbo123 in reply to EPguy]

Hello, thanks so much for replying! The private haematologist I saw also thought it might be autoimmune related, so she ran some blood tests and they all came back negative. Though, I have not seen a rheumatologist as of yet.

Hemolytic anemia is indeed something I think I have suffered from, though that would mean my platelets would also decrease not increase it's all really curious indeed

[Shelly1960]

Hi sweet hang in there and don't give up I was like you in limbo for a while and just kept going back and saying how poorly a felt and exhausted eventually a doctor sent me to hematology and I had a bone marrow exploration and got diagnosise. Me for the exhaustion i was told to try manuka honey and lemon and ginger. So each day i melt honey in boiling water and then cut a lemon into slices add to the honey and let it seep over night and drink the next day. Don't know if it helps but feels like I am doing something I also take vitamin d and folic acid each day. Also remember to rest where you can and also now always start my day with a strong proper coffee

[inlimbo123 in reply to Shelly1960]

Hi Shelly, thank you for this. My vitamins are also helping and I can't survive without a good coffee in the morning, will definitely try lemon, ginger and honey too thank you!

[Cassandra61]

I am so sorry you are having such a rough time. You are in the right place here though and everyone will have some information or support to offer. People's kindness and knowledge has got me so far. I think try and find out as much as you can as this will give you confidence in dealing with the NHS etc. Then do all you can to look after yourself and manage your fatigue, tiresome I know. There are some good resources on this site about fatigue. Can anyone help you get through the summer holidays, clubs, play dates or anything? Try to explain what you are going through and ask for a bit of help. Anyway hope you help some support but there is always support on this group. Take care 🌞

[inlimbo123]

Thanks so much for your advice, the blogs on here and forum have been great thus far. I need to work on asking for help in real life but will have to over the holidays, I just feel like a fraud without a solid diagnosis if that makes any sense? Anyway, thanks again!