Low hemoglobin

[9896150629]

Hi! I'm new on here, Louise.

I have been diagnosed as CLL in August 2021.

I have low hemoglobin any suggestions for bring ing it up would be appreciated.

[Panz]

Welcome to our community…this is a super place to be as we have loads of intelligent and caring people. I have had issues with my hemoglobin all 33 years that I have had CLL. Being a vegetarian it is a challenge….I eat a lot of spinach fresh and cooked plus golden raisins. They also have me on a Rx that is a heavy B complex and loads of iron.

Wishing you only the very best on your journey….just remember you are not alone!

Panz 🙏💕🙂☘️

[AussieNeil Administrator]

Hi Louise,

I've deleted your other post where you asked "Any suggestions for naturally raising my hemoglobin? It's at 7.2".

I must inform you that you may be facing a serious risk to your health. If your haemoglobin continues to fall, you risk organ damage when your haemoglobin drops below 6. In Australia, you already meet the requirement for red blood cell transfusions (haemoglobin under 8.0).

From your profile, you are being treated for AutoImmune Haemolytic Anaemia (AIHA), which is more common with a CLL diagnosis. AIHA occurs when rogue B-lymphocytes produce antibodies that attack and destroy your red blood cells. There are a number of ways that this can be countered, beginning with the steroid treatment you are currently on. High dose IgG can sometimes work. If you consider this as an immunity transplant from other people, it's natural, rather than a drug based treatment. Likewise if other drug based interventions don't work a splenectomy (spleen removal) can work well, but then it's standard to be on maintenance antibiotics, because without a spleen, you are at higher risk of serious infections.

As you live in the USA, you do qualify for a free second opinion from the CLL Society's Expert Access Program, which I strongly recommend you explore: cllsociety.org/cll-society-...

Neil

[AussieNeil Administrator in reply to AussieNeil]

This recent post by Jm954 covers the role of the newer CLL treatments for AIHA:

healthunlocked.com/cllsuppo...

[SofiaDeo]

Hi, welcome to the group no one really wants to join. One odd thing about our diagnosis compared to many others, is that one may never need to treat the CLL. So even though it is generally chronic, like all chronic conditions there are circumstances that can mean one would wise to act urgently. Even if we feel mostly fine, a grossly abnormal lab reading may indicate organs are becoming damaged. Your AIHA is likely being caused by CLL cells. So "pulling out the nail in your body instead of taking another medicine as a band aid" probably isn't a long term plan. In your case, it seems your CLL cells are "the nail" in your body. Your docs have worked with you to see if just controlling the AIHA a bit (with the prednisone) would stabilize you, but your count is still dropping. You're not stabile, you are declining. And your level now is almost decreased to dangerously low. Please see/speak with someone sooner rather than later. I am one of those that decided to get treatment shortly after diagnosis because I was severely symptomatic. And I am still around a decade later. Sometimes it hurts to "pull out the nail", but.

AussieNeil gave you some great information, we also have a lot of "pinned posts" where you can learn more about our disease & this site. You can also search for posts from others about their anemia, AIHA, and any other health issues. The second opinion is great & useful. If you're not near a "CLL specialist" for routine care, it is possible to discuss overall treatment strategy with a specialist and do the bloodwork, monitoring, etc. with a local hematologist-oncologist. But please pick something to counteract your dropping blood level.

I'll also mention that your post is not "locked", it is "open", so anyone on the Internet can see it. Locked posts means it's private to our community, which I like. I don't mind commenting on posts and asking questions, but I don't want the whole Internet to see it, just us here. You can changed your post to locked if you edit it.

[LeoPa]

I wish I knew what you are talking about.

[MV29]

You must watch this AIHA very carefully as it can turn on a dime. In 2019 I was trending downward over a number of months. Having gone from around 11 to 10 to 9. My CLL specialist did not like the trend, so as I left on vacation she suggested that after about 3 or 4 weeks away, I find a lab and run a count for her. But when the lab ran the number I was already in big trouble. I was called by the affiliated hospital hematology to immediately come in for transfusions. Just that fast I had dropped to 6 in just 3 weeks. A cautionary tale. Nothing to fool around with. My doctors told me it was a dyer situation because sometimes no matter what they do they are not able to stop the slide. In the end massive steroids saved the day, but led to bone death and pulmonary embolisms. Everything stable now and I was told that once a critical episode like that happens it rarely repeats. Take care and stay vigilant.

[AussieNeil Administrator in reply to MV29]

Thank you for sharing your personal experiences illustrating why AIHA needs to be quickly addressed.

[chif888]

You may have come across the following web page ?google.com/search?q=bleedin...

There may be some good answers for your query ?

[chif888]

Oops ! Sorry that I had wrongfully placed the platelet web instead of the hemoglobin web. The hemoglobin web should be medicalnewstoday.com/articl...

[Veebeegeebee]

Hi Louise, this is a really good site to be with. Many wise people with lots of answers who can provide links for one to connect to. Lots of those people have similar complaints to yourself and have “been there and done that” also, so can relate to your illness as well. It is a really caring community worldwide. Best wishes for your journey to better health, Veronica.