Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: irish on August 31, 2018, 02:26:12 PM

Title: Anyone having unusual causes of anemia???
Post by: irish on August 31, 2018, 02:26:12 PM
I have been having anemia much of the time for the past 3 years and off and on for 10 years before that. I have been diagnosed with a borderline case of pancreatic enzyme insufficiency that is better when I use OTC enzymes from Walmart per my GI docs approval.

I have a arteriovenous malformation in my colon that isn't very big but docs told me to be aware that I could bleed at anytime. Sooo I have had 4 IV iron infusions in the past 2 1/2 years and headed for more. I had a colonoscopy and esophagoscopy last week and everything was good except for yeast in esophagus and now ono Fluconazol.

I am to have the test where you swallow the pellet and pictures are taken of your small intestine for the next 8 hours to check for lesions, autoimmune, etc. If this is negative we are back to ground zero. I keep mentioning that maybe it is from the Sjogrens. I also did a whole lot of research ono Hashimotos and low and behold I found one of the main symptoms of Hashimotos is anemia.

Anyone have any other suggestions. I want to just take iron on a daily basis cause I am not crazy about doing the IV iron. Thanks. Irish
Title: Re: Anyone having unusual causes of anemia???
Post by: Joe S. on August 31, 2018, 08:01:39 PM
I may not be a good one to comment on this as I have had iron issues since I was a young child. At that time I was fed blood dishes to try to bring my iron up. Then came vitamins that had additional iron. I took those for many years. So in my teens and twenties my iron was normal. For the past 20 years my iron has been low.

I do not have suggestions for you but this may be an issue related to sjogrens. I was very dry as a child and told to suck on a small rose quarts rock to stay moist. No, I never swallowed it. This indicates that I was dry as a child. This dryness extended to skin and other issues that I have to this day. I lean to low iron as part of my overall condition.
Title: Re: Anyone having unusual causes of anemia???
Post by: katie1111 on September 01, 2018, 05:07:04 AM
I have also had anemia for several years.  I had a bone marrow biopsy, but have never found the cause. I have been taking daily iron for several years.  Last year my hemoglobin started dropping again for no apparent reason and after about a year ago, with no change in medication, started going up again.  Who knows why.  I am hoping that the oral iron will continue to work.  I have given up trying to figure out what's going on.  I just try to "roll with the tide."  I had pancreatic problems when my gall bladder became inflamed and had to be removed.  It took about 2 years for my pancreatic enzymes to get back to normal.  I also have been diagnosed with autoimmune gastritis which is very rare.  I have to give myself B12 shots.  I wish I could help you, but all I can suggest is get a surf board and continue to roll with the tide.  My doctor says he enjoys looking at my blood work results because he has no idea what to expect.

Katie1111

Title: Re: Anyone having unusual causes of anemia???
Post by: irish on September 01, 2018, 10:51:32 AM
Thanks for the info. I go through life just planning my life around my hemoglobin. It is amazing how our body does get used to these low numbers. Sometimes I am so short of breath and other times not so bad.

Yes, it is fun when you get your blood work back to see what the numbers are and especially the ferritin. I still think it is related to the anemia of chronic disease. You are lucky you got that gastritis diagnosis because the B12 can really help. Good luck. I will just keep paddling. Irish
Title: Re: Anyone having unusual causes of anemia???
Post by: aussie mum on September 01, 2018, 01:56:10 PM
Both of my daughters have low level anemia which has never been explained.

Daughter No 1 has taken iron tablets on and off,  since she was 16.

Daughter No 2 had a period of needing B12 injections. She doesn't take the daily iron as regularly as she should. She needed an iron infusion in her first pregnancy, which caused a trip back to hospital with heart palpitations. Twas a bit scary at the time.

My instincts are that the gut of autoimmune sufferers does not absorb things like iron and B12 properly. Often requiring intravenous methods. I assume dryness is part of the cause.

When it comes down to it,  the Doctors don't seem to know either. We all just have to bumble along,  treating affects without knowing the cause.

I wonder if the liquid iron would be absorbed any better.

Hope you get some answers Irish.
Title: Re: Anyone having unusual causes of anemia???
Post by: SjoGirl on September 03, 2018, 10:37:53 AM
Mine is the result of autoimmune disease. I produce platelets, but they are destroyed quickly which leaves me anemic. Now one of my meds adds to the issue.

I am upright and able to accomplish most of what I want so I quite questioning so much. I'm not suggesting that you not get to the bottom of what might be ailing you, I simply have given up fighting or fretting about it as there is little that can be done about it (taking iron does not help).
Title: Re: Anyone having unusual causes of anemia???
Post by: Carolina on September 04, 2018, 01:02:28 PM
Hi Irish, mine is idiopathic.  No cause could ever be found.   I think it's related to my immune disorder.  It started about 3 years before my neuropathy was diagnosed, and was profound.

All of my conditions are caused by my immune disorder.

But I'm lucky I can treat the anemia with Iron tablets twice a day.

Regards,  Elaine
Title: Re: Anyone having unusual causes of anemia???
Post by: vrystaat on September 04, 2018, 01:41:41 PM
I have had Macrocytic Anemia for over 10 years. Lab tests confirm this diagnosis, but not the cause. I believe it has to be due to my Sjögren's Syndrome.
It worsens my fatigue.   

Best wishes to everyone.