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Sjogrens Topics => Living With Sjogren's => Topic started by: 4Kids on November 09, 2011, 05:02:25 PM

Title: iron: how does Sjs affect it?
Post by: 4Kids on November 09, 2011, 05:02:25 PM
My iron came back "dangerously low". My hemoglobin is fine at 133. My ferrous? Is 9, and the other 14. I have to be on iron for a year :(

I am on metformin for pcos, and that causes iron loss, correct? I have had heavy bleeding from periods for 18 months now. It is hetter w treatment for pcos but not perfect yet. And when I got sick in April, I couldn't eat for a month due to thrush and not properly for three months. I lost 31 pounds in May alone, that has to have some consequences with iron right?

My hair was falling out and the general consensus is it was the iron causing the problem. I am not sure I am buying that. My hair loss is better since Plaquenil except when I started the iron. The second day of the gel iron supplements caused abshed.

Does anyone have any tips or tricks? How does Sjs mess w your iron exactly? I think I am better to supplement iron and keep up the metformin that stop metformin. I think.

Thanks for any help.
Title: Re: iron: how does Sjs affect it?
Post by: lillibelle on November 09, 2011, 05:36:34 PM
My ferretin was a 1...everything was dangerously so dangerously low.  I tested positive for Pernicious Anemia, as these autoimmune diseases often travel in packs.  Had to receive iv iron every day for 1 week, then every week for 1 one, the every month for 1 year, along with monthly b12 shots.  Besides the b12 injections, which I'll need for the rest of my life, my iron has now been stable for about 5 months.
 

Do you have a good Hematologist?
Title: Re: iron: how does Sjs affect it?
Post by: rnathans on November 09, 2011, 05:45:59 PM
I am the opposite. My hemoglobin is usually low but my iron and ferritin were just tested and are very good.
Title: Re: iron: how does Sjs affect it?
Post by: irish on November 09, 2011, 09:42:57 PM
4kids, The autoimmune disease can affect the bone marrow in the long bones which affects the production of the red blood cells. This aspect of autoimmune can be found online by searches on low ferritin level cause, etc.

My ferritin level was 6 several years ago and I had to take the iron pills 3 times a day along with a vitamin C tablet. I took them for close to a year and I heated taking it. After treating this I didn't take the pills for a while and then had an hematologist appt.He told me to take iron tab once a day for the rest of my life.

My ferritin level has been back up---not in normal range, but much higher and my hemoglobin has been up to 13. I feel that I just shouldn't take an iron pill when my hemoglobin is that high. I had a hysterectomy at age 46 so I have not blood loss to worry about.

I decided long ago to eat cold cereal that had high amounts of iron in it. I can buy a store brand cereal at my local grocery store that is just like Total. It has 100% of all the vitamins and most minerals so that I am getting that every day. Sometimes I eat cold cereal for 2 meals each day. So far this seems to help keep me pretty stable.

I don't know why mine did that at that time but that is the way this darn disease is. I would imagine that the Sjogrens plus your other issues may cause you to have more issues with this for the next few years of your life. At lest if you get the ferritin level up to 30 or so it will be less of a problem. Good luck. Irish ;D
Title: Re: iron: how does Sjs affect it?
Post by: mshistory on November 10, 2011, 05:14:38 AM
I've had mild anemia off and on for years, so I do think it's common with these AI diseases and what Irish wrote makes sense.

As for hair loss, it could be the PCOS that is affecting your hair loss as well - many women with a genetic predisposition to hair loss experience it as a symptom of their PCOS. Of course, it could also be the anemia and/or the SjS! I'm battling hair loss as well, so I know how difficult it is. I wish there were an easy answer for us.
Title: Re: iron: how does Sjs affect it?
Post by: 4Kids on November 10, 2011, 05:51:53 AM
Thanks for all the info.

I assumed pcos caused as well, but why now vs all the years I have had it? Still a real possibility.

I can do cereal and I am not enthused over supplementing either. But I need it up, fast. Am contemplating liver. I do not know if i can make myself eat it. I just started feeling weak and dizzy so I think it was low but functionally low before, but the metformin lowered it. I hope anyway, I am scared it is in my blood now and will cause complications.

I do not have a blood doctor, I am not sure there is one here! My GP gave the order for more iron. Should I call the rheumy and let her know?
Title: Re: iron: how does Sjs affect it?
Post by: Carolina on November 10, 2011, 06:02:14 AM
Dang, 4kids, that just reminded me of ANOTHER co-condition of Sjogren's and other autoimmune conditions that I have.

I began to become anemic in 2005, and by 2007 all markers were dangerously low. 

I started iron, markers got better, I stopped, they got worse (repeat three times).

I had all the standard tests (colonoscopy and gastroendoscopy) to determine a source of blood loss.  Nothing found.

I just take iron tablets twice a day, and all is well.

No wonder I think I must have a 'unifying' diagnosis for all these 'joys' in my life.

But so far, nada.

However, as with my solution to the anemia, taking iron, so with most of the other conditions......treat/alleviate/endure.

Keep us posted.

Hugs

Elaine
Title: Re: iron: how does Sjs affect it?
Post by: LizPetillo on November 10, 2011, 06:26:51 AM
Am contemplating liver. I do not know if i can make myself eat it.

I LOVE LIVER.  Either beef liver smothered in onions or chicken liver in a homemade soup.  YUMMMMMMMMM
Title: Re: iron: how does Sjs affect it?
Post by: Narablueeyes on November 10, 2011, 06:47:11 AM
I have hemachromatosis (single parent) so I'm supposed to give blood to keep it down.  too much is a big worry too.  Seems like "balance" is a huge issue with everything we deal with.  Too much this, not enough of that, I wanna know who's in charge of the scale here!!!
Title: Re: iron: how does Sjs affect it?
Post by: irish on November 10, 2011, 08:39:17 PM
4kids, I don't understand what you mean by "afraid it is in my blood now and will cause complications". Can you explain this remark. I am assuming that you mean that the sjogrens is in your blood.????

The AI disease isn't "in the blood" the AI affects the bone marrow and slows the manufacturing of the red blood cells. I don't know why this process sort of comes and goes in some people and others have it most of their life. Also, some of the medications can cause this also. Not a common side effect but one that will come up periodically.

The big thing is to just take the iron pills and the vitamin C so that you get the hemoglobin up as soon as possible. I did have a colonoscopy to rule out loss of blood through the stools.

The symptoms that I had with this was extreme weakness when I got up to walk. I could not walk 6 steps and my heart was racing and I was terribly short of breath. Cardiology put me in a monitor for 2 weeks and I was to press a button every time I got short of breath and fast heart rate. That is all I did was press the darn button. I could be monitored from 100 miles aways.

Anyway, they had done blood work prior when I was up there and it took long enough for them to get back to me. Alas, it wasn't my heart, it was my low ferritin level and hemoglobin that was causing me such misery. Learn something new everyday don't we. IRish ;D
Title: Re: iron: how does Sjs affect it?
Post by: 4Kids on November 11, 2011, 12:46:02 PM
You know how people say Sjogren's gets in their lungs or thei heart? I am new at this and was afraid the way it messes with bone marrow lift cause cancer or something scary. like that. I am relieved though you think it is a fairly benign thing. Wouldn't it he nice if once the anemia is treated, maybe it will have a positive effect on my dry mouth and throat, dry hair, leg lains and fatigue which i all assumed was from sjs. burning tongue, all the symptoms. I am really hoping.
Title: Re: iron: how does Sjs affect it?
Post by: irish on November 11, 2011, 08:59:05 PM
4kids, I don't mean to make the anemia sound "benign" as some people can really have severe problems. It is something that can happen and not all people get it. Just be sure to take your meds and take the anemia seriously. Make sure to get blood work done as doctor orders.

Also, be aware that the anemia can be caused by gastrointestinal bleeding, bleeding ulcers, or some other medical issue. We get so used to blaming sjogrens for everything and we need to make sure that the anemia isn't caused by other things. Good luck. Irish ;D

P.S. Sjogrens can cause issues with the heart itself. Some people will have arrrthymias or irregular heartbeats that need medical intervention. These autoimmune issues can certainly keep us hopping. The good thing is that not everyone gets everything. We all seem to have our own little corner on certain symptoms.
Title: Re: iron: how does Sjs affect it?
Post by: Nat on November 13, 2011, 11:28:30 AM
I have posted a great deal on the lack of pancreatic enzymes and the central role they play in the development of autoimmune disease. You can directly trace each and every symptom of every autoimmune disease directly back to these missing enzymes. Low iron is a common finding in autoimmune disease. For instance, Dr. Woods, the scientific director of the Fibromyalgia Association of America has found fibromyalgia patients also lack iron. Anemia is a common finding in RA.

The problem in autoimmune disease is that you are unable to absorb the iron you do have. Taking additional may lead to further complications. For instance, lack of B12 is the cause of pernious anemia, but I have posted studies to show that these enzymes in the pancreas are "essential" for the binding and transport of B12 in the body. (you can check my past posts to see the study) Taking supplemental B12 that you cannot properly metabolize has led to an increased risk of cancer and even death in studies. (check past posts)

The same would be true of iron. Here is a study that shows these enzymes regulate iron absorption. Imagine standing at the bus stop with suitcase in hand waiting for a bus that never comes. Loading yourself down with more suitcases won't make the bus come.
http://ndt.oxfordjournals.org/content/23/10/3063.full?keytype=ref&ijkey=IC94FAmKug1SV5n
Title: Re: iron: how does Sjs affect it?
Post by: Pisces24 on November 13, 2011, 12:03:28 PM
Always check any meds (new or old) you are taking for side effects.

I had one once (do not remember the name) that dropped my iron real low. Two weeks off it and iron was just fine.
Title: Re: iron: how does Sjs affect it?
Post by: 4Kids on November 13, 2011, 12:18:25 PM
I have been having extended periods for 18 months. 18-20 day periods, with 12-15 days of heavy bleeding. Nobody can bleed like that without consequences.  I have been under an extreme amount of stress, bith physically and emotionally for the same timeframe. I am doing my best trying to eat the natural foods.
Title: Re: iron: how does Sjs affect it?
Post by: Narablueeyes on November 13, 2011, 12:21:45 PM
I have been having extended periods for 18 months. 18-20 day periods, with 12-15 days of heavy bleeding. Nobody can bleed like that without consequences.  I have been under an extreme amount of stress, bith physically and emotionally for the same timeframe. I am doing my best trying to eat the natural foods.

I had pretty much the exact same thing.  My Ob-Gyn suggested I get a Mirena and for three years I enjoyed one day a month of light spotting.  Had to get a replacement and having to deal with some bleeding but it's getting lighter and lighter every month. 
Title: Re: iron: how does Sjs affect it?
Post by: 4Kids on November 13, 2011, 02:20:24 PM
I am super not.cool with things being inserted or left in me. I couldn't even relax enough through a double dose of whatever they give you to relax and a local anastethic which was supposed to allow me to have an endometrial ablation. I had a traumatic birth with my first son and a simple pap is enough to do me in. I could never stand the pain of an iud or feel comfortable with it in there. Mature... Not so much but that is the way I am.
Title: Re: iron: how does Sjs affect it?
Post by: irish on November 13, 2011, 09:17:03 PM
When a person bleeds that much every month it is very hard to keep replacement of iron going at a fast enough rate even when you are healthy.

I know that raisins are higher in iron as is spinach which is much better in a salad than cooked. Egg yolks have a fair amount and Malt o Meal contains 50% of the daily requirement in a serving plus it is so darn good.

I am assuming that you have had your blood checked for conditions that would prevent clotting. I am wondering what you doc plans to do with you when an endometrial ablation doesn't work. Have you ever had a D&C??? Did it help??

The reason I asked is because I bled a lot all my life with my periods and I also had small hemmorrhages every time I had a baby. When I had by hysterectomy in 1990 by gyne said it was no wonder I bled. He said that the blood vessels feeding my uterus were as big around as his thumb. When he told me that I was really glad to have had that surgery instead of trying to treat the problem medically. I messed with the bleeding about 8 months big time and at age 46 thought this is enough of this. Never sorry and wished I had done it many years earlier.

Hope you can get this taken care of soon one way or the other. Miserable way to live.Irish ;D
Title: Re: iron: how does Sjs affect it?
Post by: 4Kids on November 16, 2011, 11:07:02 AM
They are going to put me under or give me an epidural (spinal) so that I won't feel the pain and maybe then they can. I hope so.

This month I bled for 8 days? Much better, with 3 days of lochia type spotting. 11 days after Metformin  for 2 months and weightloss, only really 5 of heavy bleeding. So I do see that as a real improvement over what I had been suffering though.

After that I don't know. I did have 4 c-sections, and the last 2 I had bleeding that went on forever. So maybe something else will have to be looked at. We will see I guess.

I have done Ferramax once or twice, depending on the day and a liquid called Floradix. I am feeling much better and will have my doctor draw blood in a week or two to compare.

All that iron and no constipation. I think the Metformin and Plaquinel were running anything I got clear out of me. Now the scales are much more balanced in that I don't have the runs and am not constipated.