Wednesday, March 21, 2018

The 120 Day Cycle of Blood. Pro's and Con's list of Iron Intake and Side Effects. The Crisis Point Of Low Ferritin/Anemia.

*My blog patterns show that during transitional months or generally around this time, my output of blog posts are higher. It's how I cope I suppose... This post is another addition to my fellow Low Ferritin sufferers. You often search my blog for posts. I hope this adds some validation, knowledge or fellowship to your journey.*

The 120 Day Cycle of Blood:

My Internist warned me the last time we talked in January about the 120 day cycle of blood. With all my reading I actually did not know this important fact. He said, " I know you are trying to convince me that you could take less iron. I understand quality of life issues and we will try it your way. But I can almost guarantee you that around April you will be back in my office needing to be hospitalized. I am continually surprised at your resilience this way, but the body has it's cycles. Would you PLEASE consider the iron infusions (I talk about why that is the last resort HERE.) If not, I could see you needing an emergency blood transfusion by summer."

To which I argued some more about my plans ect. and he replied, "The body has 120 day cycle of blood. Your blood work is ok right now in terms of Hemoglobin you are borderline and not considered Anemic by ONE Point. For the first time in over a year. But your Ferritin fell to a 5, and it is not finished falling. That is an unacceptable way to live. It is tough on your whole system. And THIS is the good news. You are benefiting from the iron input you quit mid November. Around the 120 day mark from the last time you were regularly taking large amounts of iron, you will feel a drastic difference. If I took blood work then you would be considered Anemic and you would probably be at a 2 for Ferritin again. Now let's talk infusions..."

I will readily admit that I did not listen fully. I DID tuck that information away to see how it would pan out. I tend to test what is told to me.
He was right.
He did allow me to propose a reasonable ish plan of moderate iron intake and not to be re tested until the Summer. He smiled at one point and said, "I really do admire the way you live your life. I like how you tell me honestly that you won't do something. Most people lie to me and then just don't take the pills. At least you tell me when you have not. I appreciate your honesty and the fact that you regularly walk on your treadmill, are conscious of your diet, and try to live life to the fullest while having this issue. But at the same time, you can not just ignore it. You can't keep running on fumes. Basically you are the car and you fuelled up years ago, and your car has managed to chug along but it's going to quit eventually. Are you prepared for that? The only thing that would save it at the point would be a blood transfusion if we are lucky and catch it. How do you feel about that?"

Honestly, at the time I felt like I was beating it- I was Superwoman. The iron was in my system from November but I wasn't suffering the quality of life side effects of the pills. For the first time in a year I felt strong. My workouts were regular and I could do more in a week than usual. I began to read again. I could sing. I was sleeping regularly long hours again. Life was pretty good. So I thought maybe my life was turning around. Thus, I stubbornly stuck to my plan.

About a week ago I hit the 120 day mark. My life fell apart almost over night. I could not make it through a work out without all my muscles seizing up. I was no longer sleeping through the night or getting more than 3 hours of sleep. My pain levels went up. I was panicky because I could not seem to catch a breath. My limbs were constantly frozen and my nail beds were purple and cold. My hair was falling out in large, alarming lumps. Stairs were once again my enemy. I was asking my children to grab me things because it took too much energy to get up. It was almost like black magic. Immediately I was different and each day the quality went down a little more.

And of course, it didn't really click until last night. I thought it was because my cycle was late. I blamed it all on women's issues. But my cycle has not been late since November. Being late was also something that happened when I am lower on iron. For the last few days, I was dizzy and out of breath. Yesterday it was so scary, I took a large dose of iron at supper and a couple hours later I felt, if I stayed in bed, that I had a little burst of oxygen. I felt like I was hooked up to one of those lovely nose masks at the hospital. I was craving Coca Cola (I have not consumed sodas or pop in over a decade besides club soda so this was unusual) and rocks. And then it all clicked.

Low iron also causes insomnia ironically. A sufferer can be 'organ weary' exhausted, and still not be able to sleep. I have to admit, that was the main reason I first considered iron transfusions. I read some stories where women said that for the first time in years, they slept through the night. I was desperate for that...but then in November things started to improve so I thought...maybe? Maybe this is the end of a phase?

Low ferritin is NOT a phase. It is cyclical to a point. For someone who can be intelligent, I can also be pretty dumb. It's annoying that I convinced myself of this.

The Negative Symptoms of Taking Iron:
*These symptoms are different for everyone and depend on dosage too. These symptoms are what I experienced on a regular high dosage after charting for commonalities. Many of these are proven on multiple medical resources. This is the Pros and Cons list I gave to my doctor.*

Upsides of Iron:
- Helps the bone weary tired (minimally but definitely helps with breathlessness.)
-Less out of breath after taking it awhile
-Prevents heart attack and stroke apparently
-Less hair loss after time on it
-Slight memory improvement after awhile
-The obvious point of storing Ferritin and getting Hemoglobin to "normal" levels.
-My nail beds stop being purple most of the time.

Downsides of Iron:

- Can grow unknown cancer or add to risks later in life
- Aids in bowel disease/ Can help trigger later bowel diseases.
-Causes Bowel Inflammation (this is a real problem that messes with life.)
-Constipation and Bloating (to the point of needing...well, NOT FUN.)
-Panicky feelings at first and suppressed feelings…happens each time. I am either numb, panicky or angry on iron ( maybe due to liver processing) but it is real and it is frustrating. Whenever I am off for a few days I get back to a "normal" range of emotion. This has also been proven on multiple iron forums for many women.
-Night Terrors. These are different from nightmares and happen each time I take iron and are done as soon as I quit. They are gruesome, terrifying and I don't know where the horror show comes from because I am careful what I put in my mind...this is one of the toughest aspects for me.
-My family admits I am crankier on iron. This is also due to the sensory overload causing an over run system from all the side effects.
-Stomach pain.
-"Pregnancy like hunger." Or "Diabetic Hunger" pains. High doses of Iron make me DESPERATE for food when it is time to eat. The stomach is more inflamed and hunger pains are more pronounced. I was diabetic during one of my pregnancies. That drop in blood sugar felt similar to what it feels like around mealtime after taking large amounts of iron.
-Gut and liver pains.
-Fatigue (of a different kind from all the symptoms.)
-Insomnia! (This point you can't win either way. The ONLY time when this is not an issue for me is when I am in a 120 day cycle benefiting from previous iron consumption but not currently taking iron. Then, and only then, I get semi regularly, satisfying sleeps.)
- Vivid dreams and nightmares that disturb my sleep which go away after a few weeks off iron.
-Remembering to take it is a problem and stress due to executive functioning which is draining.
-Blurry eyes (that are fine off of iron.)
- Unpleasant taste (metallic.)
- Headaches that ease up when I am off iron unless I am very low and then headaches are a problem anyway due to the lack of oxygen. Really you can't win with some of these points.
-WEIGHT GAIN. The last three times I have tested this - it takes 3 weeks OFF of iron and I do nothing different and I start to lose weight. Happens every time. But I need to get to the three week mark and not take it all to get to this point. And I only lose about five pounds total after.

                                                             The Crisis and Fall Out:

As you can see, I feel better overall off of iron therapy, until my levels fall so low that I'm desperate again for the iron. Off of the pills I have a better quality of life but then eventually my iron drops and my quality of life falls again anyway. I have written multiple posts about this in my Low Ferritin label. THIS post explains the constant Catch 22.

When I actually counted the days down and realized what was happening to me last night, I went into a trance. I put my headphones on and traced the sun patterns on a lamp that was sitting next to me. Repetitively. I didn't realize tears were streaming down my face until I looked up and my whole family was surrounding me. It probably did not help that I was listening to the song, "Where do Broken Hearts Go." Ha. I took my headphones off and explained what was wrong. My son said, "I heard you working out and you sounded horrible. I wanted to tell you to stop. So guys we will have to take turns doing mommy's dishes because it will kill her." My husband added, "Maybe you should stop working out? If you have to drink coffee just to get through treadmill time and you are out of breath, maybe it's not for you right now?" That is when my face crumpled and I full out sobbed. My daughter crooned, "Oh no, I hate it when mommy cries. Mommy and (her brother) when they cry are heartbreaking because they rarely full out cry and it seems so...well just heartbreaking..."

They were all sweetly consoling me. If you have had chronic illness you probably understand why I cried. It is that moment when you feel like life is going good, you've "got this", you finally feel capable. And then it all comes crashing down.

I had gone on the treadmill every day, without fail, other than a few times of sickness, since October. I forced myself to do at least 20 minutes on days that I felt like I could not take another step. I felt accomplished for this discipline. It also improved my mood, blood pressure, and felt like I was doing SOMETHING. To think of giving up the one time of day I felt accomplished, happy and good, was asking a lot. I think I will still walk 20 minutes every day instead of 40 but I will have to keep my pace below 2.4. That is when I get out of breath now, so that will have to be my limit. That is devastating enough. Obviously if I get to the point I have been at before, I won't even be able to do that. I am hoping not to get there. But it seems like it could be inevitable.

I was also crying because I HATE being helpless and in a Catch 22. Those are the worst. I am dreading the next few months. I have to take large amounts of iron again to feel better in 120 days. I have to feel terrible AND suffer the side effects of the pills and not feel the results for months. That is not something I am good at. Yet, I also feel I have no choice. I hate feeling like I have zero choices. But, at the same time, I have to remind myself I DID benefit for January and February, and I did technically choose it.

"Some nights I stay up, cashing in my bad luck, some nights I call it a draw. Some nights I wish my lips could build a castle, some nights I wish they'd just fall off..." I guess I had a couple months of goodness. Sometimes it's a draw...while others, well, it could be worse. Yet, that does not negate the struggle. I will admit to nights re- researching into Iron Transfusions but I just can not see myself doing that without being unconscious and having someone else choose it for me. It's one of those irreconcilable moments we all face in some regards...

I had one book left in a series I was reading...and five days ago I quit reading. That isn't coincidence. When my iron falls, I can barely concentrate on things. I lose interest in most pursuits. I go to "survival" mode. At the time, I wondered what was happening because I NEVER quit the last book in a series I love. In fact, I gobble up books that I enjoy, and especially can not wait to read the ending. I stopped playing 'Snitch' at lunch time with my family. I just sat in the corner of the couch and stared off into space. Again, I blamed it on a severe cycle of hormones. But, now that the pieces are together, within context, everything ties into my blood. If I do end up getting my cycle, that will also worsen my state due to the heavy amounts I tend to bleed. So yay. It is all looking so good right now.

That was sarcasm. To which I have also had a lot of lately. Soon I will not have energy for that either. I know how this goes. I have been here before. (Again, see the bottom label for more.) All I can do in these moments is hold on tightly to what I DO have. Gratitude mixed with reality. I need to face up to reality and do what I need to do to survive my predicament and be the best I can be within reasonable choices, but I also need to remind myself to be grateful for what I have and what is in my life. Beginning with this guy...

I have been there for him, and he has been there for me. I tend to be his rock emotionally and he is mine physically. He likes it when I need him (for some reason.) When my iron is low, he tends to step up his energy level. I am lucky "I'm in love with my best friend. Lucky to have been where I have been...Lucky to be coming home again...Lucky we're in love in every way...You (he) make (s) it easier when life get's hard."

Some people go through this alone. If you are one of those people, please try to find support. Ultimately, know that perhaps hospitalization is a good route. I have managed to avoid it BECAUSE of my support system and my large aversion to hospitals in general...but if you do not have anyone, these times are serious, and perhaps you should consider options that are opposite of mine. Please remember that this is not medical advice but my own experiences in this realm of Chronic Disease. Some of my choices have sucked. Others I am quite proud of. Most have equalled out to neutral (benefits and downsides either way.) In other words, don't make my choices if they do not feel right to you. Find your own way...and hang in there. That is what I'm telling myself, "This too shall pass. It's all a cycle. Try to embrace what you can, choose the better options, grieve what you need to, and BE whom you are AT THIS MOMENT. That is all you can really do."

Songs mentioned: Where do Broken Hearts Go?- Whitney Housten

Some Nights- Fun

Lucky- Colbie Caillat and Jason Mraz


Anonymous said...

Just read your post. I am sorry you are going through this. It is awful. I still think you need thyroid medicine too - C.

Kmarie said...

C: I know you have mentioned that Desiccated natural Thyroid stuff. I just feel I have to get my other issues sorted first and then maybe I will finally pay to have a Natural Medicines Dr. figure out the rest... SOmetimes I do wonder if my thyroid nodule, even though it has shrunk, DOES affect my absorption or other issues somehow...or hormone production. The body IS connected and one thing can not be treated in isolation - I agree - but I am too tired to find another thing that may be wrong with me right now.:) Thank you and I will keep it in mind.

S said...

Thank you for sharing the post. I will get my ferritin and iron checked soon. My thyroid is now under control ( with meds) and I am feeling much better after MANY YEARS. I agree with you that with chronic illness, many issues are not solved permanently but they rather go through a cycle, of ups and downs. Hope you feel better soon. For me, even thyroid meds took 7 months to adjust in my body and hope it continues to stay the same way. Also that chronic illness changes a person in many ways, we become more vulnerable and more sensitive ( this has resulted in many complications in my social life and relationships). I am still not sure if I can go back to my pre-illness days (both physically and mentally) but writing about our illness gives us some perspective about where we are heading into life in general and what all we can do to cope better. Our limitations (of the moment) not only gives us a new perspective on life about what is valuable to us or what is insignificant or what needs immediate attention and care, but also changes/transforms how we look at ourselves and the world. We actually get a new pair of eyes which may not have a better vision but a different kind of vision :). Keep writing, dear friend

Kmarie said...

I am so glad your thyroid is under control after many months! That is SUCH good news! Yes, you are right- it takes many years to get chronic illness under control and then it is not even solved but a cycle. I am glad you are going to get a ferritin test too.
Yes it does change the landscape of relationships:( Some for good and bad...I dont think I can go to my pre illness days ever again either. Too much has changed. Again, some for the better but a lot not as well.
You are right- it does give a new perspective.. which is part of the good. I love your second last sentence:)
Thank you. I am glad I am on this journey with you!
I read a quote that said that INFJ and INFP often take refuge in one another because even though they are both introverts they find each other unobtrusive to each others private space and not to feel any pressure to be anything other than what they are. They also tend to share interests on some level...and I find that with you:)