What could be affecting my haemoglobin?

[nellietheelephamt]

I am not looking for specific advice but for ideas of where to look next.

Since 3 January I have had 9 or 10 units of packed blood cells. The last double transfusion was 27 February and a week later my hgb was 73 again, 74 before the transfusion and lab normal is 115-165.

I'm 27 months I have had a failed upper GI endoscopy, a capsule endoscopy, an MRI scan, 2 CT scans and my bone marrow biopsy was cancelled. I've also had 9 or 10 negative Q-Fit tests.

No further appointments at the hospital as my GP has been asked to monitor the Hgb and arrange transfusions.

Blood tests (smear) show micro and macrocyres plus abnormal shaped cells, target, pencil and oval. The RBC is normal.

[hunter5582]

Sorry to hear about the continuing problems. It sounds like you still do not have a clear diagnosis. Your case is complex and there are no clear answers. What you are describing is beyond the scope of a GP to manage alone, though that doctor should be part of the treatment team. I cannot understand why hematology/oncology would not still be involved in your case until they have definitively ruled out MPN, MDS, or another blood disorder or combined disorder. I do not knowhow they could do this without a bone marrow biopsy.

I believe gastroenterology also discharged you. Did you ever get a clear answer from them about GI status? Did they definitively rule out liver disease? If no one else has an answer, was rheumatology consulted regarding any possible autoimmune disease?

I would not want to guess what is going on to cause the issues you are having. It could be any of a number of things or a combination of conditions. It may be that you are dealing with something quite rare. I know you have been around and around with the Health Board regarding the quality of your care. You have consulted privately as well. Please do not give up. Keep pushing for an answer. Require your system of care to provide effective services. It is doubtless exhausting, but it is necessary to ensure you get the answers you need.

Wishing you stamina and success moving forward.

[nellietheelephamt in reply to hunter5582]

No diagnosis, just anaemia which in my book is a symptom.

No GI issues found and two haemotologists have told me that haemotology does not deal with anaemia as it is a GI problem 90% or 95% of the time. The remainder never have a diagnosis.

My GP asked endocrinology to give an opinion but I missed the appointment due to miscommunication and because I was having a transfusion that day. I have a history of endocrine tumours.

So at the moment there are no further investigations. My GP is seeking board approval for an out of area multi-disciplinary team referral but that can take a while for a ruling and I am not hopeful it will be approved. Off the record I have been told my case is on the pile of incurables.

[hunter5582 in reply to nellietheelephamt]

It sounds like access to the outside multidisciplinary team is the best way to go. It seems likely that there is more than one thing going on.

You are correct that "anemia" is a symptom. It means that there is a deficiency in RBC/HGB. There are different causes for anemia, with GI bleeding being only one cause. There is also Hemolytic, Iron Deficiency, Folate Deficiency, Vit B-12 Deficiency, Aplastic, Thalassemia, just to name a few. Treating the anemia requires an accurate diagnosis as to the cause.

Wishing you success moving forward.

[Goose2023]

the advise from hunter5582 is pretty much spot on....you definitley need a bone marrow biopsy to rule out an mpn ....transfusions are not good....your iron levels will esculate and then you will need to take more tablets....your hb will bottom out ....have been their....get a diagnosis by being referred to a specialist heamatogist or oncologist.....your normal doctor is not equipped to do the job......all the best

[nellietheelephamt in reply to Goose2023]

I don't absorb the iron from tablets and the infusion had horrendous side effects and the benefit lasted less than 48 hours......

My poor GP is tearing her hair out as we hit brick walls. The referral out of area was blocked as there is a local haemo but she said she doesn't see patients with anaemia as it is a GI issue or unexplained so that was a dead end. The previous haemo was the one who ordered the biopsy but failed to order the anaesthetic so it didn't happen even though my notes say it did. The review I asked for came up with that no result = negative result and, of course the notes are always correct. Even the form that states I am biologically male ( interesting as my birth certificate says I am female and I have birthed 3 children ) has never been corrected.

[Amethist]

Not sure if this will be helpful in your case, but copper maybe required to treat anaemia.

Perhaps ask your gp for a cerulopasmin test to check your levels .

pmc.ncbi.nlm.nih.gov/articl...

[Gipsy123]

Dear Nellie

I agree with Hunter: the blood film urgently needs a BMB to confirm. You don’t say where you are, but your GP can ask for shared care with an MPN expert team. Thats how I was able to have Guys now re involved in my care ( I’d moved to Scotland but had returned to England) Sounds like have a good GP. People speak highly of Manchester, too.

Don’t give up b

[nellietheelephamt in reply to Gipsy123]

I'm in Scotland and the health care here is dire. My GP has asked for shared care several times but has been refused due to budget constraints. The haemo refuses to become involved as she doesn't do anaemia. Dr D, who I saw privately in December, thought the anaemia would mask any other BMB findings.

My next blood transfusion will be 3 units and should have been tomorrow but the lady who does the transfusions is on well deserved leave for 2 weeks so I will have to wait. And no, there is no one else to step in and cover.

I know someone with a pancreatic tumour who was refused referral to the centre of excellence in Edinburgh as the health board admin said he could be treated locally. It took several appeals for him to get a PET scan in Edinburgh by which time things had progressed.

I am also waiting for a blood test to establish how well my single adrenal gland is working. Letter with instructions dictated in January and received 4 March by which time things have moved on of course.

[Gipsy123 in reply to nellietheelephamt]

My heart goes out to you- one of the factors that lead to my leaving Edinburgh and returning to previous home near Dorking was accessing the English NHS. It has its problems, too but not on the scale you are experiencing. Don’t know what else to suggest- but maintain the rage.

[nellietheelephamt in reply to Gipsy123]

Oh I am a "difficult" patient I have been informed. When I asked how and why apparently I ask questions!!!! This has not lead to better treatment but resulted in me being at the bottom of the pile. The one who is cancelled or overlooked. Once I was left in outpatients unseen after all staff had left. The cleaning gentleman had to let me out as I'd been locked in.

The excuse was that the clinic was running late and receptionist had left so the specialist was unaware I was still there.