Hgb decrease/low ferritin & drop CONCERNED! HELP!

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Hi,

My sympathies go out to all you guys out there with the dreaded ‘C’.
I very recently lost my very dear wife to ph+ALL/L. Totally devastated.

I learnt a lot about blood for obvious reasons.

I have concerns about myself.

I had IDA last year,had endo and gast results concluded h,pylori infection,mild gastritis and duodenal erosion and inflammation.

hgb level was 9.9 and ferritin was through the floor .5

H.pylori eradicated and treatment with PPI (omeprazole)

initially was given oral iron but couldn’t tolerate so was sent to haematology.In irony it was my wifes consultant that seen me.

Had to have two infusions of Ferrinject and blood level recovered and remained stable until Feb of this year. Average hgb readings retained 14.6 up 15.6 this Feb with ferritin levels being around 80-100.

My diet has been very poor and I am on fortijuice x 2 daily and eating what little I can when I can as I have had bowel problems since being diagnosed with IDA in April of last year.

My concerns are…….

My Hgb was 15.6 on the 5th of Feb this year and I thought my bloods were looking very good.

THEN!

Had a FBC on the 28th of this month and my Hgb has dropped to 13.7 and my ferritin level has dropped to 30.

My concerns are…Have I had a bleed? gastric possibly??. OR could it be an error at the lab?

I know what you will all say…

NO! I am not passing any blood (not that I have seen) and had several FOBT done over the year and all are negative.

Is a drop of 1.9 of my hgb and ferritin drop of 58 radical over 8 weeks??

I would really appreciate anyone’s comments that could be helpful.

Many thanks,good will and wishes to all…

Dean

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Hi Dean, a great big welcome to the Bloodwise community forum. Your post and questions are far too technical for me and we cannot give you medical advice, but your questions seem to be best answered by someone in your medical team. However I really sense your worry and concern and I have found for me that ‘me and my head’ are not good with ‘not knowing’.I have found this community forum is a very supportive place, so please do let us know how you get on and take care of yourself.

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Hello dean,
I was very sorry to hear that you lost your beloved wife to blood cancer recently. I feel the best place to explore your concerns about your own health is with your general practitioner as no one in the forum is qualified to answer such a technical subject. However if you want to share your story of your experiences of caring for your wife I am sure it would be cathartic and also help anyone else going through the same thing. We are all here to support each other no matter what the circumstances.
Best wishes
Alfie

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Hi Erica,
Thank you so much for your welcome to the forum.
It appears that you and I have the same perspective on a ‘need to know’ basis which reflects on everything that we do.
Definitely not the best way to be when you have an chronic disease.
I am so glad though that your maintenance therapy is keeping your illness under control.
Thank you again for your kind words,
Dean

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Hi Alfie,
Thank you for your welcome and reply.
We was introduced to ‘Bloodwise’ when my dear wife was initially diagnosed in June 2016.
Unfortunately though I spent most of my time researching what Rose had so I had the ability to push for every treatment option available.
Hence my technical questions regarding my own blood I unfortunately became medically aware.

Just as a note to EVERYONE that is on this forum…When my wife was diagnosed I was totally unaware and as a family just how much destruction is caused not only to the person that is ill but the total overwhelming aspect on absolutely every aspect of life.

Everybody must stay strong and positive.What will be will be.

From what I learnt and pushed for regarding funding for my wife’s treatment…the Governing bodies and Government have a lot to answer for.Its a total disgrace.

Also,IF the infection scenario gets you or your loved one…ALLWAYS ask at A&E that any of the medical team caring for you are qualified to touch your Pic or Hic line.DONT let anyone touch it if they are not.

Thanks for your welcome Alfie,Dean

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Dear dean, thank you for your comments. I agree a diagnosis of a life threatening cancer has a massive impact on everyone involved in the patients life. My husband has been a rock for me during my treatment for primary plasma cell leukemia and I could not have made it this far without him. So I know you will have done all you could to make sure your wife got the best possible treatment. I have recently been given access to a drug via the cancer drugs fund so maybe things are moving forward a little. It’s sounds as though things are still very raw for you are receiving any kind of counselling to help you process your grief.
Best wishes
Alfie

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Hi Alfie,
My wife went through almost three years of intense chemo and a stem cell transplant.
I researched it to the enth degree, to the point were I advised the consultant for a final bone marrow biopsy after he went weeks beyond the recovery advised period for inotuzamab.I could see Rose (my wife) was not recovering and her counts were failing to recover.
We finally had the terminal diagnosis after the BMB in January.All the team at our hospital did their upmost and best to attempt a cure.Rose passed away in her sleep very peacefully, too which I am very grateful for.
My eldest daughter was her main carer 24/7 as I was working and my youngest is in her teens.Its all been very hard and as I said, many nievely watch the TV about cancer etc, as we did until Rose was diagnosed.

I am far from being a doctor, however your type of disease has a good prognosis and response to treatment, you should get a good remission period and stay on maintenance therapy for a long time.

Keep going and remain totally positive all the way.

I am not having any counselling, I have been on a ‘priority’ list for 13 months now. And as you can obviously sense from my forum entry…I need it, but I also need help with a physical problem that I have. too which I am struggling to obtain.

I am even more so annoyed at the level of care I am not getting from my GP.Hence my above concerns regarding my own blood tests, She has failed to do her job by not comparing them to the last BT taken eight weeks ago.She has just observed most recent and marked as satisfactory, too which I know after comparing my blood’s there is something definitely up.

After threatening suicide with my GP two weeks ago, I have finally got an appointment to see a gastro regarding my problems, GP deems my issue’s of stress…you know your own body and this is definitely an issue.

So sorry to go on.You have your own woes.

My most upmost sincerest wishes are with you and your family.Keep fighting and stay well.

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Hi dean
My heart goes out to you and your family. I was meant to have a stem cell transplant but developed cardiomyopathy while receiving chemotherapy and combined with total kidney failure for which I now receive full time dialysis was deemed to high risk. I finished chemo 3 months ago and am in plateau. Ppcl is extremely rare, 1 person per million of the population but the treatment is similar to that of multiple myeloma expect I did doxorubicin as part of my therapy, hence the heart damage. I am very lucky to still be here as I know of no other survivors who have not had a transplant. However my suffering has been manageable and I am having quality time with my husband who has taken temporary retirement. My haematologist has made me no promises as he has not had much experience of my disease but has managed to get me the latest drugs available for when I relapse. You should remain resolute in getting your health concerns adressed Thank you for all you did for your wife you were obviously totally dedicated to her well being. Have you ever looked on the macmillan website as they have a forum for bereaved family and friends where you can share your thoughts and feelings with people who are going through the grieving process.
Best wishes
Alfie

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Hi Dean, welcome to the forum, I am terribly sorry to hear you recently lost your wife. I can only imagine how hard it was for you and your family, it sounds like you were her biggest advocate and I’m sure she felt lucky to be cared for by you.

I hope you are able to see the gastro doctor soon, and you get some answers as I can sense you are very worried and it would be remiss of me or anyone here to offer medical advice or solutions. I am sorry though you’ve had such a fight with your GP.

You may already be aware, but I would hope Cruse Bereavement Care https://www.cruse.org.uk/ would be able to offer support sooner than a year? And do bear Samaritans in mind too, they’re available 24/7 on 116123.

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