Low Iron Levels and Weakness

Posted by Dana, Volunteer Mentor @danab, Jun 24 11:21am

Hi, I am a caregiver to my wife who has just found out She has severe Low Iron Levels. She initially is getting 2 treatments of IV Iron infusion and im Praying she gets her energy back as she went from walking about 4 miles a day to almost not able to get around the house without feeling very weak. Looking for others who may have gone thru similar situation. No other issues except for the low Iron we're noticed on any Labs and a similar situation happen in March where she was hospitalized and ran every test known and could not find a cause. They at that point did not test Iron that I know of.
Thanks

I havent had that expierence but maybe thats because my iron was only slightly depleted the only similarity in my expierence was that I had low energy but that was from other problems

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I have had problems maintaining my Iron level in past and was treated with IV Iron treatments. The IV treatments will help, but may need to be repeated in future. I had to have it repeated multiple times. I think they repeated every 6 months. I no longer need anymore. Testing for Ferritin (iron) is usually not done unless requested. My underlying cause was malabsorption due to surgery on stomach. Anything your wife can eat or drink with high levels of protein will help.

Prior to Iron infusions, provider recommended Vitron-C., a iron supplement formulated with Vitamin C. Vitamin C helps your body better absorb iron.

My tests were ordered and results monitored by a hematologist.

If they ran lab tests, they probably already checked the thyroid. I take thyroid medications and if dosage is off or another medication is interfering with Synthroid, it can also cause the same symptoms. Example, if take an Iron supplement, never take at same time as thyroid medication..

Hope iron infusions help,

Laurie

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I have had a low iron level for years and take Vitron C, which has helped get my ferritin levels out of the danger zone. However, as far as weakness/depleted energy, I have found that taking a healthy amount of vitamin B12 helps tremendously! I also exercise a ton more than I ever have in my life, and that has been a huge help as well. I have increased my protein and believe that is also helpful. Hope your wife finds a solution to this debilitating problem.

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Hello, Dana, @danab I echo the folks above and add a couple of sides. I'm 74, have several issues that make my hormones wonky. Thyroid I take med early, by itself, before breakfast. That seems to be important. Also, I have severe obstructive apnea and use a bipap machine at night. When I had the overnight sleep study test at Mayo a year ago or so, they diagnosed me with restless leg syndrome. I knew my legs hurt all the time in some way, had to keep moving all night long and could never get comfy. With the diagnosis, the doc had ferrous level tested for iron level. My was low off the charts.

She started me taking Vitron-C, it works well. We increased the dosage, but I understand they now find more iron supplementation isn't always a good thing, as the body can't utilize more. It takes a long time to get the levels up and stay up, just how the body works. My levels are down again and I may be heading for IV infusion. But, the doc is staying on top of it and yes, it's helping a lot. With the RLS and energy level and general feeling of malaise is improved. I noticed a huge improvement after a while taking the Vitron-C.

BTW: I let my hair grow out and it's now silver. Had black hair, stopped coloring. After taking iron, my hair is darker, now I'm salt and pepper with much more pepper. Funny, eh? Could make a fortune off that somehow…..

Oh, my grandfather died due to pernicious anemia, so we're watching this iron closely, as the B's. I have B and D deficiencies, so supplement with those and with B12 shots every 2 weeks. Might have those levels ck'd as they also contribute to energy greatly.

Best of luck in your investigation. Blessings to you and your wife.
Elizabeth

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@roch

I have had problems maintaining my Iron level in past and was treated with IV Iron treatments. The IV treatments will help, but may need to be repeated in future. I had to have it repeated multiple times. I think they repeated every 6 months. I no longer need anymore. Testing for Ferritin (iron) is usually not done unless requested. My underlying cause was malabsorption due to surgery on stomach. Anything your wife can eat or drink with high levels of protein will help.

Prior to Iron infusions, provider recommended Vitron-C., a iron supplement formulated with Vitamin C. Vitamin C helps your body better absorb iron.

My tests were ordered and results monitored by a hematologist.

If they ran lab tests, they probably already checked the thyroid. I take thyroid medications and if dosage is off or another medication is interfering with Synthroid, it can also cause the same symptoms. Example, if take an Iron supplement, never take at same time as thyroid medication..

Hope iron infusions help,

Laurie

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I have had low Iron and Ferritin levels for several years. This and my anemia are caused because of poor absorption due to numerous stomach and intestinal surgeries.

I can tell you that when I have an Iron and Ferritin infusion that my fatigue is lessened and my energy increased. I was getting these infusions every 3 months at Vanderbilt Clinic in Tennessee. I also give myself B-12 injections every month and that seems to help but, not as much as the infusions.
Now that I have moved to Jacksonville I am trying to get an appointment at Mayo in order to get established with a Hematologist but getting an appointment is really very difficult.

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This all is interesting to read. I used to be very active until late Fall last year. I walked 3 to 5 miles (speed walking) every day, I had pretty extensive surgery, and it took a while to get well after this. My energy is close to zero now, and i have a hard time to get my rear end out of bed. Because of a problem with my pituitary gland, my body is not making any sex hormones, and I have to introduce them through pills and injections. Because of this, I get a blood tests every three months, but nobody ever tested for my iron levels. How can I convince my physician to take a look at those? (all done by the Mayo Clinic)

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Does she have Peripheral Neuropathy? I do and some days I can barely move.

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@ess77

Hello, Dana, @danab I echo the folks above and add a couple of sides. I'm 74, have several issues that make my hormones wonky. Thyroid I take med early, by itself, before breakfast. That seems to be important. Also, I have severe obstructive apnea and use a bipap machine at night. When I had the overnight sleep study test at Mayo a year ago or so, they diagnosed me with restless leg syndrome. I knew my legs hurt all the time in some way, had to keep moving all night long and could never get comfy. With the diagnosis, the doc had ferrous level tested for iron level. My was low off the charts.

She started me taking Vitron-C, it works well. We increased the dosage, but I understand they now find more iron supplementation isn't always a good thing, as the body can't utilize more. It takes a long time to get the levels up and stay up, just how the body works. My levels are down again and I may be heading for IV infusion. But, the doc is staying on top of it and yes, it's helping a lot. With the RLS and energy level and general feeling of malaise is improved. I noticed a huge improvement after a while taking the Vitron-C.

BTW: I let my hair grow out and it's now silver. Had black hair, stopped coloring. After taking iron, my hair is darker, now I'm salt and pepper with much more pepper. Funny, eh? Could make a fortune off that somehow…..

Oh, my grandfather died due to pernicious anemia, so we're watching this iron closely, as the B's. I have B and D deficiencies, so supplement with those and with B12 shots every 2 weeks. Might have those levels ck'd as they also contribute to energy greatly.

Best of luck in your investigation. Blessings to you and your wife.
Elizabeth

Jump to this post

@patientk @roch @deechase @ess77 @shirlpat @lindes Hi Everyone and Thanks for all the wonderfull advice. She had her first IV yesterday and is feeling the effects today which seems common (I feel the same the day after a IVIG treatment I get every 2 months) but hopeful the next treatment next Thursday will get her back up to a good level. I was mostly happy at least the Infusion did not cause any side effects which for her can be an issue. So they only planned 2 treatmens so far and retest labs the week after Her next treatment.

They did check her B12 and that was fine and she does take vitamin C on a daily bases. So Thanks everyone and Ill follow Up after next week.

@sport1776 No not that I have heard of. They tested so many things when she was in the Hosipital Im not sure if that one was tested. But Thanks Ill keep that in mind.

@lindes I know what you mean Im surprised myself that this wasn't tested in the Hosipital. Her Hemotoligist / Oncologest just out of the Blue decided to check it. So maybe the next time you see your Doctor ask about it.
Have a Blessed Day Everyone
Dana

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@danab

@patientk @roch @deechase @ess77 @shirlpat @lindes Hi Everyone and Thanks for all the wonderfull advice. She had her first IV yesterday and is feeling the effects today which seems common (I feel the same the day after a IVIG treatment I get every 2 months) but hopeful the next treatment next Thursday will get her back up to a good level. I was mostly happy at least the Infusion did not cause any side effects which for her can be an issue. So they only planned 2 treatmens so far and retest labs the week after Her next treatment.

They did check her B12 and that was fine and she does take vitamin C on a daily bases. So Thanks everyone and Ill follow Up after next week.

@sport1776 No not that I have heard of. They tested so many things when she was in the Hosipital Im not sure if that one was tested. But Thanks Ill keep that in mind.

@lindes I know what you mean Im surprised myself that this wasn't tested in the Hosipital. Her Hemotoligist / Oncologest just out of the Blue decided to check it. So maybe the next time you see your Doctor ask about it.
Have a Blessed Day Everyone
Dana

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Dana and all, the ferrous level test is separate and requires a specific request for the test. It's not a normal part of most testing. In fact, even now, I ask various docs to include it in the bloodwork we're, as well as D, B, magnesium. I ask and most often these wonderful doctors are willing and interested in finding those results. Never a problem there.

I find the Vitron C is extremely helpful and noticed quite soon an increase in energy, a different outlook, and improved life. Since the numbers are going back down and nearing concerning levels again, the next step is IV infusion. I actually welcome that day. Then, perhaps the benefits of taking Vitron-C will last longer.. Hope so.

Blessings and may your wife be better and better.
Elizabeth

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Question about the vitron-c. Been taking iron for most of my life and I take c but would taking the vitron-c make any difference than taking the 2 separately? Been anemic most all my life and now osteoporosis. Just curious.

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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!

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@lisal64

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!

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@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

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