Low Iron Levels and Weakness

I, also had very low iron levels, 90 days after Auto SCT. My Bone Marrow Biopsy, at the time,, also said "no iron stores". I recieved 2 iron infusions, and my iron levels have been normal since then. I also developed hypo thyroidism, found after the iron was corrected, and am now on medication for that. My thyroid level is coming down, but I still have fatigue and weakness, which is a side effect of my high dose maintenance, Pomalyst. The chemo and then the SCT did a number on me. I nap when I feel like it. I was told last week, that I have reached Stringent Complete Response, so our prayers have been answered. I am a long way from my normal, but take one day at a time. I hope they find, and correct your wife's issues. Best wishes to you both!

@lisal64 You just had your 1st transplant birthday this month! That’s awesome! A hearty congratulations and a huge smile for reaching the Stringent Complete Response! That’s the ultimate goal of using your own stem cells for remission of multiple myeloma. I’m thrilled for you because I know this hasn’t been easy by any means but it’s a positive milestone in your ongoing journey of recovery. You must feel pretty energized mentally with that good news!

I am sorry you’re having the side effects of the medication your taking.
The fatigue and weakness from the Pomalsyst would be really frustrating to cope with. Especially now after hitting a secure remission point, you want to get on with life at full speed. Chemo and the transplant does take its toll on the body. Having an autologous SCT you were spared any graft vs host issues but it doesn’t come without its own share of recovery issues and collateral damage. The first year is the hardest so keep the faith! You’re doing amazingly well and your positivity will keep you propelled! ☺️

How long will you be on the Pomalyst? Is this a long term maintenance medication that can be reduced or eliminated over time?

Wishing you a steady recovery, Lisa! Lori

@deechase, How much is ‘a healthy amount of B12’, please? Thanks.

@ quimbie
Good morning,
I take iron to increase my Hemoglobin for frequent blood product donations. I’ve never taken vitron-c so don’t know how well it works.
I take an iron only supplement and originally took a vitamin C tablet with it to help absorbsion but it didn’t increase my Hemoglobin because I was eating cereal with milk and the calcium binds to iron and the iron is eliminated. Now I’m using orange juice instead of milk and my Hemoglobin jumped from 11 to nearly 15.
Take care,
Jake

Can low iron levels be attributed to long term treatment of Type 1Diabetes? After 30 years of erratically unsuccessful treatment to maintain glucose levels, now at 72 have very low energy and dizziness/nausea. Doctors (all types) have not been able to help. Janet

Thank you for reply. I am big milk drinker so maybe I need to look at that. So many variables that sometimes not sure which is best. I do the best I can with what I have to work with. Thanks.

Well, I'm not a health care provider, so I can't say for sure, but I found this information WebMD:

I would check with your health care provider to be sure what is right for you.

Hello @jrlynch, Janet, and welcome to Mayo Clinic Connect. As I have a friend who dealt with low levels of iron and anemia, I am familiar with one cause and that is Celiac Disease. It can be diagnosed by having a GI specialist do an endoscopy. Other tests might diagnose gluten sensitivity but do not diagnose Celiac Disease.

Here is some information from Mayo Clinic's website about Celiac Disease, https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220.

In this article, there is information on what the symptoms are for adults who have Celiac Disease. You might take a look at them. Do doctors think that diabetes treatments are related to low iron levels?

I'm wondering also if you are currently seeing a good endocrinologist or are you just seeing a PCP? If you are not with an endocrinologist now, I would recommend asking for a referral to one.

How do you feel day-to-day Janet?

Lori, thank you for your kind and encouraging words! My family and I are thrilled with my SCR . My MM specialist wants me to continue the Pomalyst for a year, then repeat BMB. He did talk about tweaking the dose later, as a possibility. Right now, I am afraid to rock the boat, and am ok with continuing. I will have labs checked every 2 months, locally. I may decide to see if they can lower the dose later, if my numbers stay down. It was a trade off: Pomalyst 4 mg with NO DEXAMETHASONE! I was happy that my maintenance did not include the Dexamethasone, as I had really bad side effects from 8 months total, of the 40 mg dose ,weekly. My eyesight is worse than ever now, too. Possibly from the steroids. I am a nurse, and have decided that this fact is a blessing and a curse, as a patient. I have been my own advocate, and am so thankful that I have been able to learn so much about MM. My nursing Med- Surg book (from 28 years ago), only had 1 long paragraph about MM. I have been blessed to recieve care at Mayo, as well. I wish all of us with MM could reach SCR, and pray for a cure soon, too! Thank you again for your support!

Going on 9 months now. Shortness of breath, extreme fatigue when exerting. Checked out with VA . pulmonary good, no blood clots, EKG and Echo good, suspected Pancreas Cancer negative, two colonoscopy good, WBC & RBC good. Recent stress test good.
NOTE: Prior Prostrate Cancer, radical performed over 15 years ago. PSA came back up within last 17 months. Cancer in lymph nodes picked up on PET scan. However, being treated with quarterly Eli guard shots, PSA now at 0.01. Previous systemic colitis, that’s good now.
Recent Iron BT showed saturation rate (low) 17, Iron very low side of normal.
Help! Thank you!