High GGT post treatment for Acute Myeloid Leukaemia

Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver problems. I had an ultrasound performed 3 months ago which showed nothing to be concerned about but since then not only has GGT been rising but bilirubin has risen from normal to 27. I have had a great many blood transfusions for anaemia- my ferritin level got to 5000 at one point. An MRI showed a mild build up of iron in my liver but not serious enough to treat. I take anti viral medication, a small amount of steroids. My consultant haematologist admits he is foxed. I guess I should ask him to repeat the ultrasound?

Any other thoughts would be gratefully received.

Thank you

Gail

[Chelle_]

Gail. Have you a diagnosed liver disease? It might be worth asking your question on MPNVoice or on the leukaemia site. Regardless I think you should speak to your GP. I have a rare blood cancer and speak to my doctors as often as possible. Good luck x

[Hidden in reply to Chelle_]

Thank you Chelle. No I have not been diagnosed with a liver disease. I see my consultant heamotologist weekly and we discuss my liver function as part of that consultation. He does not seem too concerned at this stage but I am worrying and trying to understand what is going on. I have also asked the question on the Anthony Nolan site.

If you don’t mind me asking what type of blood cancer do you have? Have you undergone stem cell treatment?

Thanks again Chelle

Gail

[Chelle_ in reply to Hidden]

Hi Gail. I have Myeloproliforative Neoplasm Polycynthymia Vera so part of the Leukaemia Family. I won’t go stem cell transplant until it becomes myelofibrosis. Xx

[Hidden in reply to Chelle_]

Good luck Chelle. If you do need a transplant- and I am sure you will know this - get yourself as physically fit as possible beforehand. The chemo is pretty brutal but doable. I took this advice and came through the procedure itself well with only minor muscle wastage.

Best wishes

Gail

[Chelle_ in reply to Hidden]

Ha thank you. I am currently on the liver transplant waiting list. I am on chemo tablets, have been for a long time, they aren't nice but nothing in comparison to the real thing. I hope they sort your iron levels out soon. xx

[Hidden]

Transfusion related iron overload is notorious for causing liver issues and CAN be treated with a chelator like deferasirox or deferoxamine.

A followup MRI might be more helpful than ultrasound to show whether your iron issue has progressed to a point where treatment is indicated.

As iron has been documented high in both blood labs and MRI, I would keep pestering those doc's for continued (new) monitoring and possible treatment to resolve your symptoms.

A wise man named Sherlock Holmes once said: When you have eliminated the impossible, whatever remains, however improbable, must be the truth!

[Hidden in reply to Hidden]

Thank you Metanoia. Yes I will push for further investigation. I have taken Exjade for short spells to knock the ferritin level down but have struggled with it so when the build up was mild we agreed not to treat it. I will re visit this. The MRI scan took place a month or so ago so probably too soon to request another- but thanks for the advice to request that rather than an Ultrasound.

Loved the Sherlock Holmes quote. Very appropriate!

Thanks again for your response

Gail