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Posted

So depressed and discouraged here.

For one thing I missed my appointment at the hemotologist and my treatment will be delayed now.

I'm thinking of calling and seeing if they want to go ahead and schedule me for an iron treatment...and I guess we'll have to figure out at what frequency I need them.

I'd really like to not have to go every week.

My last one was November 11 th so let's see it took me 2 1/2 months to get back down to a ferritin of 14.8. I can't even believe it.

The only thing I can think of is these heavy periods I've been having.

Last month I had a clot so large that it fit in both hands held out.

When this happens I just cry and shudder.

It didn't come out on it's own I had to assist it.

I am so sorry to write such graphic things but I don't know how else to explain what I'm dealing with.

Okay here is the thing. I'm having chest pain and something else I think this anemia affects thinking too because I just feel really out of it.

So the fears come and at times they are illogical but then I second guess myself and think oh everybody or other people have periods like this too and they are okay.

Part of my problem is that I do have the chemical, drug, and food sensitivities that some of the others have here so taking iron at home has been very difficult.

And it makes it hard to think about having a surgery or any procedure at all.

How can I have anything for pain when it looks like all narcotics are sulfites?

Well I told the nurse who did just briefly glance at my labs for me today. I could see them laying there on the counter about the heavy periods and that my hunch is heavy bleeding she said get into your gyno like ASAP when she saw the huge drop in ferritin from Nov to Jan.

Now the thing that is crazy is I don't know how long I've been struggling with this low iron.

I remember years ago having a ferritin level of 15 when I was still working.

I was super tired, I don't hardly even remember not being tired.

But I don't remember the chest pain then.

Maybe some of the slow thinking....feeling in a daze...finding it hard to do things.

The only good news is it hasn't been low long enough to affect other things.

All the other numbers looked normal.

It's the ferritin only that was low.

So I'm thinking I'm gonna need at least 1 treatment maybe 2 per month til something changes?

I have the gyno appt set up for tomorrow at 10 I just happened to see she does the ablation that can be done of the uterus right in her office.

It's a very short procedure if I'm a candidate and only takes 5 minutes.

I am fortunate that I have 4 children already and am getting up there in age and with my health in general another pregnancy was not going to happen so it won't affect me negatively in that way.

I might try the ablation first and see if I can't avoid a major surgery and see if the ablation works for me and continue with iron treatments in the meanwhile.

I guess maybe if I could get in and get a treatment it would help bring me out of this funk a bit.

I would feel better be able to think a little better and hopefully the chest pain would stop.

I should maybe call and see if they can't get me scheduled if that is okay.

I cannot even remember where my levels were...my thinking is much impaired so I'm going to try to look back here where I wrote them down.

Posted

lieze,

Sorry to hear you're going thru this. I had a similiar experience years ago and my gyn gave me

a shot to slow down my bleeding. I can't remember what it was but your gyn will know what it is.

I was told that I might need multiple shots but didn't. Ablation didn't work for me.

I suffered thru peri menopause hot flashes, spotting, etc. for years after this shot tho. I just never had the clots or massive loss of blood again. fwiw. If I had to do this over again, I'd get a total hysterectomy and avoid the peri menopause. Anytime, I had a strong estrogen surge my symptoms, esp allergies, made me to sick to function.

Good luck .. D

Posted

I wonder if it was progesterone?

I guess what happens at my age is you are not really making an egg.

The egg contains the progesterone which controls the bleeding and is like the turn off.

With no progesterone the bleeding just gets wacky is my understanding.

So I guess first question is-can I tolerate the progesterone or whatever shot it is or will I react to it?

Is that an option to just go in and get that monthly to slow my bleeding as soon as the period starts?

It might be worth a shot but here again I'm gonna get scared to death of an allergic reaction.

Posted

I have a ton of allergies too and I was ok with it. I really didn't have a choice. At that point

I had a standing order for a transfusion if I showed up at the er again. I was too weak even think

of having a hysterectomy at that time but I was told that it was an option ..

I was told that it would only take a few shots total not monthly.

Fwiw. I had to change gyns

while this was going on in order to get better care. My new gyn gave me the shot very quickly after he saw my records.

If I hadn't been so sick, I'd have pursued legal action against the old gyn. Even the er doctor couldn't

believe how useless she was.

Posted

I also have extremely heavy periods since my twins and I also get anemic every month because I bleed so heavy. I've never had a clot that big but I've had them probably 3 to 4 inches in diameter. They scare me also because my doc told me anything bigger than a quarter is too much blood. Great! Have you ever had an ultrasound done since the bleeding? Fibroids can cause massive bleeding like that and are very common. The pill could also help and may even help your pots if it is worse on relation to your menstrual cycle. I'm sorry your dealing with this. I hate it and getting anemic every month does not help my pots at all.

Posted

I'm sorry you had that trouble with your gyno.

I've felt similar with my family doctor blowing off my anemia issues.

I guess I've made it this far but oh my I feel horrible.

At least we know now what my issue is or at least one of them and I can hopefully get family to quit calling me lazy.

Okay I'll go open minded and maybe a shot will do it.

I had thought of that a whole year ago that time I stood up and I was gushing every where.

My gut told me go to ER and get a shot!!

Then I thought where did that come from.

I swear my memory has really taken a hit with all of this.

I might have learned about that at some point in my nurses training or just heard it as a personal story but my memory is shot.

I thought I was hallucinating or something.

Thanks for sharing with me.

II won't go in pushing ablation if they offer the shot I'll take it.

I'll get my nerve worked up for that.

Posted

Okay when all this started it may have been three years ago as I said my memory is shot!

But that is what I was seeing as a first symptom was weird things going on with my cycle.

I remember going into my boss and saying I think I have a bad case of menopause.

So at that point I found a gyno -mine had moved.

They helped me a lot and did hormone testing etc.

That all came back normal but I know doesn't mean much there is such a wide variation of norm.

They did do an ultrasound at that point they didn't find anything but said my uterus looked large.

Well I thought after 4 babies maybe that's normal. I mean I don't know if you'd ever really go back to normal.

I had space issues too with my babies where they were big and I didn't have enough room.

My one son was born with his foot bent up.

Daughter with some leg nerve issues that still exist cause they didn't have enough room.

And I physically would hurt just from the size of the baby.

So I wonder if my uterus didn't get stretched to kingdom come another reason why I would want to make sure the ablation was safe for me.

But at that point they said my uterus was healthy and a hysterectomy would not be in my best interest.

I think they will most likely do another ultrasound since it's been at least 2 years and maybe try other measures first.

Posted

The upside in going to the er was that my blood loss due to menses was measured. In just a day or two, it dropped

enough to worry the er doctor. I have no idea what test determine that tho.

On a really gross note, I left the er exam room in need of a good cleaning .. Tmi ..

Posted

Oh I know what you mean.

Of all things when I had my cardiac ablation I was on mine.

I think I was laying on a chux pad and everytime I would roll over to be put on the bed pan the nurses would scream oh my god there is blood everywhere!

It was horrible and embaressing!

You know I'm not sure my hemoglobin always reflects my low ferritin.

I guess I am really happy to finally know why I feel like death.

And that there is a way to fix it hopefully.

Posted

I wish I could remember what test that was that showed my blood loss.

Good luck tomorrow. I was thinking you may want to make sure you have allergy meds with you.

I have a really good idea of how you're feeling so I hope you get some relief tomorrow.

Please let us know how it goes. Tc .. D

Posted

Leize, I've been wondering how your iron infusions were going! So, just one so far, huh?? Definitely get those heavy periods under control. That would be a huge first step. I had an ablation back in 2000, and it worked great. I only had enough of a drop of blood every month for me to know I was on my period. Let us know how your appt. goes!

Posted

I had four iron infusions one each week the last one was Nov 11 then the next week I had labs drawn.

The following week after that -my appointment and I believe at that time my ferritin level had come up to 70.

Where it helped was my iron absorption was only 3% and that has stayed in the normal low level at about 20% or low 20's anyway.

So I do feel better than before I started the treatments but still not good with an iron level of 14.

I can tell my mood has really sunk.

I'm dreading just getting up and walking to another room and I didn't realize how much that reflects where my iron is.

But those are some of the signs for me along with the chest pain.

I really guess I need to wait to talk to him before I jump to conclusions.

When I started though my ferritin was 13 and now I'm just 14.8.

How did I survive all this time without those iron treatments?

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