Since getting diagnosed, I was found to have low Vit D and iron. My GP sent me to a Gastro, who did colonoscopy, BW and biopsies to rule out Celiac. All was negative. But my ferritin level was real low, too. He thought maybe I'm gluten and lactose intolerant. So I was avoiding those things. I eat plenty of red meat and green vegetables, beans, etc.
He gave me a supplement called Ferrex 150 Plus, which I have taken every day for three months. I was able to bring my D level up some with supplements, but my iron is still very low. As I am going through menopause, I have two or three months with no period, so it's not that. My B12 is okay, as is every other level.
Why would my body not be absorbing iron all of a sudden? I asked the pharmacist if the supplement was interacting with my other meds and she checked them all out and said no. I'm not anemic yet, so he says, but I'm sure it's headed that way. Anyone else have problems just with iron? (I also have Hashimoto's and Raynaud's, as well as GERD and restless legs syndrome).
At my wits end! ::) :-\
Hi Babs :)
I'm sorry - I don't know the answer to your question but I know I had a friend who was low in iron once and they gave her shots of it to get it back into her system.
The only time I ever took iron was when I was pregnant and it used to pass right through (probably because I didn't actually need it - it was just standard procedure to give it then) How do I know it passed right through? I used to end up with stools that wouldn't flush! ::) Most embarassing.
I hope the doc keeps an eye on this and gives you shots if necessary.
keep us posted. take care - Scottie :)
babs
i have no idea, but attacking it with diet intake and supplements might help...guinness had a good amount of iron, as do dried apricots,dried figs, baked beans and boiled eggs, maybe that might help, lets hope so, oh and the quinine in soda water helps restless legs as well, as does for some reason i cant say bovril, old nurs ei worked with swore by it for patients, and strangely it works a treat at bedtime
T x
Hi Babs,
I have had iron deficiency anemia for years (along with Sjogren's). The hematologist told me they can be related. My ferritin was also very low (7) and I have tried iron supplements with no luck. The ferritin is your iron stores. Your blood pulls from the ferritin (stores) when there isn't enough iron being absorbed...to keep you from being anemic. Your blood levels will eventually drop if you don't keep your ferritin in a more normal range, or improve your absorption of iron. i receive Ferrlecit IV infusions of iron to keep my ferritin high enough...which keeps my hemoglobin up.
I also have gastroparesis (autonomic dysfunction from the Sjogren's) and my GI believes it is the reason I don't absorb iron via food or oral supplements. If you have problems keeping blood levels (including ferritin) in normal range, then you should consider seeing a hematologist. After all, they are the experts on blood.
Hopes this is helpful.
Anita
I have the opposite problem, I store iron. I do know that vitamin C helps the body to absorb iron. Also, teas, apples, whole grains help the body to pass the iron through more quickly without absorbing it.
Shell fish, red meats, organs and beets help the body to build it's iron stores.
Hope it helps, and good luck to you with it.
Sassie
You've all been very helpful. I really appreciate it. I am going to research gastroparesis, and consider going to a hematologist.
Just a thought....are you taking any stomach acid inhibitors like protonix or nexium or the like? I have read that iron is best absorbed in an acidic environment. Also taught in a nutrition class that drinking a glass of orange juice with iron helps in absorption. Maybe you need a different type of iron with better absorption? Don't know, just some thoughts. Lesley
Hi, there. I also heard that about PPI's. I am on Aciphex. I asked the pharmacist and she said no problem. Go figure!
The pharmacist probably looked it up in her drug books to see if there was a drug interaction and it said no. An absorption problem is not the same as a drug interaction. The iron and the Aciphex probably don't interact together, but the reduction of acid in the stomach can interfere with the absorption of the iron. Lesley
The PPI's can inhibit some of the iron absorption, but generally I would think it is part of the autoimmune complex. I had low ferritin(down to 6) and hemg of 9.6 or something. It happened in a matter of months. I was on iron for a long, long time and the last time ferritin was checked it was up to 38 or so. Not high enough but high enough to be less of a problem.
I saw hematologist and was told to take iron every day of my life. I tried for a while but it drove me crazy with the vitamin C, calcium and then I have to take so many antibiotics and that gets involved. It got so I had to take a pill every 2 hours to get them all in. I gave up taking it. I eat Total every day as it has 100% daily iron requirement. Also, I check the inside of my lower eyelids because when I get anemic they lose the pink color. Docs do the CBC several times a year also.
I am under the impression that this can be an on again-off again problem. If you do the research you will find many articles that refer to the inhibition of the bone marrow that is caused by the autoimmune process and results in anemia for many people. Irish ;D
Those of you that have had iron infusions, can you please tell me more details about the procedure itself?. I have to have one on Friday and I am nervous because the hematologist told me that there are people that are allergic to it. I have reactions to so many things. He said they usually pre medicate with Benadryl and Solumedrol to act as an allergen preventative. I am concerned about reacting to those too. My body just does not like anything foreign chemicals of any kind.
My ferritin is pretty much non existent at 2 ! My hgb two weeks ago was down to 7.6 when I saw the rheumy. Yesterday at the hematologist's office, it had dropped to 6.9. I freaked! I asked him HOW it could have gone down when I have not had any "known" active bleeding in those 2 weeks. That's when he explained that cells only live for so long and without the ferritin/iron stores there is nothing to replenish them. My mind always reels with thoughts of cancer, but he said for right now, he thinks that I just have trouble absorbing and keeping iron in my system. He didn't really see any red flags that say cancer. ::whew::
I would appreciate hearing from everyone, but especially those that have gone through these infusions. I was kind of hoping that a blood transfusion would be the doc's suggestion. But, he said that those are far more risky than iron infusions and that it's much better to let my own cells regenerate as long as we can get the iron built back up.
Thank you for your help!
Hope your eating habits are good. I am one of the very few that push myself to eat 75% of the time due to I usually don't feel hungry.
Dr gave me an antibiotic once (I don't remember the name) but a potential side effect was loss of appetite. I really didn't notice I wasn't eating well. Dr was upset about my iron drop but took me off the med and retested me 2 weeks later. I went from a 6 I think to a 9 in those 2 weeks so he was sure it was the med causing the problem. Read the possible side effects of any med you take.
Also taking a multivitamin w/iron every day helps. Good luck.
Hi, Pisces. Boy, do I eat good! Too good! Lots of many types of food! And I already take many many vitamin supplements. I am on a prescription Iron pill that has magnesium and B and other things in it.
Thanks for your thoughts :-*
I just came from our Houston SJS meeting. I may have the answer. The rheumatologist who was speaking said that SJS can cause us to not secrete enough stomach acid. If there is not enough stomach acide we can become iron deficient because without sufficient acid iron will not absorb well.
Tuckerdog
Thanks, Tucker. That's good to know! New one on me.....
How did your iron infusion go on Friday, Julie? Did they give you the Benadryl and Solumedrol before the iron infusion? How long did the infusion take? How did you feel afterwards? I hope it wasn't too bad and that you managed to rest over the weekend.
I went to see the haematologist last week and I've also got to start iron infusions: twice weekly for four weeks, starting on Tuesday. My Hb is very low but apparently the main concern is my iron stores that are completely depleted and need building up urgently. Like Irish, I've been told to take iron every day for the rest of my life which doesn't fill my heart with joy - the thought of that plus the effects of morphine will leave my poor bowels in quite a state! The haematologist is testing me for Croen's Disease which can prevent you absorbing iron and apparently can develop alongside/after other AIs, particularly SjS.
I had a few months of severe anaemia 8 years ago, had lots of tests and investigations but nothing untoward was discovered and I slowly recovered. Never worked out what caused it. This time I'm pretty sure it's linked to gastroparesis, and the fact that I barely ate for 3 months this summer. I need to get the anaemia sorted out before I can start Cytoxan so I'm keen to get it right asap.
Tucker - lots of us have to take meds to reduce stomach acid particularly if we're taking NSAIDs. Did the rheumy connect that with stomach problems and anaemia? Are we making the problem worse?
Thanks everyone for raising this issue.
Take care - Chickpea
Chickpea,
I made it through the infusion Friday. It took 6 hours. I was given Tylenol, Benadryl, and Solumedrol. I was leary of the Benadryl because those of us with Sjogrens are not to take any decongestants or antihistamines due to their drying effect. I've been hospitalized before with lung hemorrhaging due the severe dryness, so I was pretty concerned. When they injected the Benadryl, it was a head rush, dizzy feeling. Kind of like when you are being put under with general anesthesia and know you are going out. The nurse said that was 'normal' and to just go with it?? They were surprised at how loopy and tired it made me for the whole day (and into the next), but I was not surprised. Medications always hit me hard and last for a long time. I usually try to get doctors to understand that I only need child size dosages of things, but not many of them listen. (I weigh under 100 pounds)
After being given the premeds, I was given a small test dose of iron to make sure I was not going to react adversely to it. It was probably a 45 minute wait after that before they hooked up the continuous bag of iron.
They did have to restart the IV half way through, because it started hurting and I was getting some orange staining under my skin from the needle not being in the vein quite right.
Other than being tired while the infusion was being done, I didn't have any allergic reaction. I kicked back in the lazy boy, covered with several blankets, and dozed most of the day. Glad my husband came with. No way was I alert to drive the hour home.
They told me to expect to have flu-like symptoms for 2-3 days following the infusion. The doctor said that I should not schedule any energetic activities for a couple of weeks, because it would take 2-3 weeks for this iron to really kick in and start rebuilding blood cells. Of course, wouldn't you know it.. the day before the infusion, my period started!! Great! :-[
Since the infusion, I've had terrible rock hard stomach bloating, upper indigestion, and lower IBS pain. I am trying to read and figure out which of the meds did this to me. I have gallstones, IBS and diverticulosis...so... any one of the premeds could have caused inflammation I suppose. I'm hoping it will be very temporary and that my Protonix will get it under control quickly.
When they first told me I'd have to have this infusion, I was hoping that it would be a one time need, but the more I read about it, it may be very difficult for me to keep my iron stores up without them, because my GI tract can not tolerate oral iron. Doc told me to start eating chicken and beef liver.
I've had anemia for years. They have always attributed it to Sjogrens and fibroids, but I've never had my iron stores be almost non existent like this. It's a very unsettling feeling knowing my hemoglobin is at transfusion level lows, and I still have to wait a couple of weeks for the red cell production to start making me feel better. Heart palpitations seem to be a 'little' less erratic since the infusion though, so that gives me hope.
Chickpea, please let us know how your infusion goes. You will be in my thoughts and I wish you the best. It is a comfort to be able to share our stories with each other. Thank you!
-Julie
Chickpea, How are your infusions going? You must be having a different kind than what I had if you are having them twice a week. I had a really rough couple of weeks after the 6 hr infusion I had. I was so weak, I had to call my husband home from an out of town job. Just now starting to get a little energy back. My stomach was a real mess. I expect that was from the premeds they gave me, but I shudder to think I may have to have this again some time. I don't go back for a Hgb/iron recheck for a couple of weeks yet. My iron level was 2 and my Hgb was at 6..and wouldn't you know, the day prior to the infusion, I started that lovely menstrual cycle, so I lost even more before my body had a chance to replenish any red blood cells.
The doc had said there are also iron injections that can be given via IM in the rear, but he said they are painful and expensive. I don't care how painful the shot it. If anyone has had those and had good luck with no side effects, I would love to hear from them as well so I can tell the hematologist that I might want to consider that form of iron if there is a need again.
He did say there was another infusion iron too, but that they put you in the hospital and give it over some 3 days and have to monitor you the whole time.
When I go for my recheck, I need to find out the name of the iron that they gave me so I have it for future reference.
Hope all is going well for you Chickpea!
Julie
Hi Tuckerdog,
Maybe that's the answer why a lot of us have low Vitamin D too. Very interesting, and thanks for the information.
Patze
Hi Julie
Thanks for getting in touch! I've just got home from the 6th of 8 iron infusions I'm having every Tuesday and Friday for four weeks.
I think it must be a different method to the one you had. The first infusion they did a test to see whether I had a reaction to it, just as you mentioned. After 30 minutes they decided it was fine and increased the speed of the pump. Getting the cannula in wasn't a lot of fun because my veins kept collapsing and it was extremely painful. Third time lucky and I didn't even bruise much. In the middle of the night after the first infusion I woke with severe pain across my chest, sort of under the bra level. It lasted about 20 minutes and slowly faded. I mentioned it at the next infusion but they didn't have an explanation.
The second time I had a bad reaction - arm went very cold and my vein was painful - so they slowed the rate of the infusion and since then they've put in a diluted dose at half speed. I have a variety of bruises on my hands and arms, real battle scars! I've been exhausted after each infusion and just need to come home and sleep. I haven't noticed any other changes; apparently it will be 120 days before the iron infusion will register as a change in my Hb or iron stores, both of which were running empty.
I wonder why this method isn't available at your hospital? FYI it's called Venofer - maybe you could ask about it? It's definitely preferable to painful iron injections in your behind! Or to the infusions you had.
Hope you're feeling better soon. Do keep in touch.
Take care - Chickpea
I know I am posting to an old post, but I am considering iron infussions for my low iron
and because I have IC, iron pills badly irritate my bladder. My iron, ferritin was at a 5,
but I was able to get it up to a 12 with supplements until my bladder starting
protesting. One of my drs is recommending it and one isn't.
Just wondering if you ladies (or anyone else with this experience)
think these infussions helped and were worth the side
effects.
If you happen to see this post I would love to know how you are doing!
Thanks!
Hi Holly
Sorry for the delay in replying to your post about iron infusions. I had a series of 8 over 4 weeks in November, and I've just started another series. My Hb is higher than it's been in a while - 10.9 - but my ferritin levels are low. I'm due to have heart surgery soon so the surgeon wanted my blood to be as good as it could be!
I cope fine with the infusions, as long as they're slow. I have 200ml over 2 hours. Any faster and my arms goes cold. I did have a bad headache after the first one of this cycle last week, but I was fine after yesterday's. They certainly do help. I react so badly to iron supplements that I'm considering having regular iron infusions instead of taking the tablets.
Hope you're feeling better soon.
Take care - Chickpea
Me too! I was severely anemic, couldn't climb stairs, almost passing out when I stood up.
I had colonoscopy and gastroendoscopy, NADA.
Turns out anemia is a FREQUENT condition that goes along with Sjogren's. I took iron and brought my iron up, then was told to stop it, and down my iron went again.
Now I just take it twice a day and don't care what the doctors say.
One of the few pleasures I've experienced is having what is called a "unifying diagnosis", so that my anemia and chronic UTI's became part and parcel of Sjogren's instead of just being random horrible things happening to me.
Maybe that's weird to say, but even knowing that my PN is probably related to my pSjS, comforts me. I'd rather have one thing with lots of symptoms than a whole lot of unrelated things. I even think my coronary artery disease is probably caused by inflammation of my arteries, related to Sjogren's. Makes sense to me.
Carolina
AMEN, CARLOLINA... LIKE YOUR IDEA OF ONE THING WITH SYMPTONS!!! ;D
Thank you chickpea and everyone else for your replies!! I am glad to
hear for the most part, chickpea, that your iron infusions went well.
I just saw the hematologist about 1.5 weeks ago to set up iron infusions
at the recommendation of my neurologist. (I see too many "ologists"!!)
The good and bad news is that my ferritin went all the way up to 16 with
the little bit of iron I could tolerate taking, but the bad news is that now
that I am in "normal range" (10-291 is considered normal) he thinks
insurance won't cover the infusions. He suggested taking no iron for
6 weeks and then expects my iron to drop below the 10 mark again...
with my luck it will drop to 11. The neurologists want me to get to
at least a 50 as she thinks many of my neuropathy type symptoms
and vibrating muscles are due to the low iron.... I wish I knew for sure!
I am thinking about calling the hemotologist to send a preappoval to
my insurance for the infusion and see what happens.
Blood work for Celiac has a high rate of false negatives so is not reliable, which many doctors still do not know. Did you have an endoscopy? My GI doc says that a common mistake is that the biopsy is not taken from far enough into the small intestine to be accurate. And was the biopsy evaluated by someone with special training in diagnosis of Celiac Disease? With Celiac, there are subtle changes in the small intestine (other than obvious villi damage) that an untrained pathologist could miss. You might consider having another biopsy (endoscopy, not colonoscopy!) and have it sent to a Celiac Center or other lab that specializes in diagnosis of Celiac for evaluation. If that is not a possibility, then you could try going on the gluten free diet to see if your nutritional deficiencies are resolved. Unexplained Vitamin D and iron deficiencies are typical with Celiac Disease. The gluten free diet is challenging to learn and you would have to do a good bit of research to educate yourself. Good luck!
Hi StephL,
Let me welcome you to the SJS World and family!
Can you tell us a bit more about you so the wonderful members here can get to know you a bit better?
Take care of yourself -
Patze
You sound like me with the same conditions. I have been anemic for the last three times i have had blood drawn. This last time was when I went in because my foot is numb. They called and said I am anemic again and she wants to do more blood work to find out why. I have taken iron supplements for years and it doesn't seem to help. I'm glad they are finely going to search for a reason.
Don't know if this is a possibility BUT do any of the meds you are taking have a possible side effect of either reducing iron or appetite suppressant? Hopefully your doctor would know so you don't have to dive into the medical journals.
I ask cause my iron got very low once and my dr have a fit. Come to find out a side effect of the medicine was appetite suppressant. I'm 105 lbs soaking wet and don't get hungry much -- so that was not something I needed. After he took me off that a month laster my iron was back to normal.
BTW: I hate with a passion the iron tables as they give me an upset stomach!
BTW: I hate with a passion the iron tables as they give me an upset stomach!
[/quote]
I often wonder if the sensitivity to iron tablets is caused by the iron medication or the artificially coloured outer coating of the tablet itself.
Many people have sensitivity to artificial colours and preservatives.
Aussiemum, have you tried the satchets of liquid iron, forget the name (brainfog again) ?
Ask your chemist about it. It is very pleasant to taste and leaves no bitter taste,
and best of all it does not constipate.. It acts quicker too being liquid..
Dolly
Hi everyone!
Sorry it's been a while since I joined in this discussion. I've had a tough six months with all sorts of new and weird symptoms, and a bit of a crisis with my heart valves. I enjoyed reading the discussion, especially Carolina's idea that it helps to see everything as part and parcel of SjS. That makes so much sense to me because otherwise we could be overwhelmed by the flurry of new and odd things to deal with. I don't know about everyone else but I still have to find a doctor who knows enough about SjS to see things that way.
I had a series of 8 iron infusions in November last year and I've just spent most of May having another series of 8. If the Venofer is well diluted and given over at least 2 hours then I don't get too many side effects. The haematologist thought that I shouldn't bother with iron supplements which were upsetting my tummy, but instead rely on regular iron infusions. Anyone else had this advice?
There's a hurry to get my Hb and ferritin levels up so I'm as healthy as can be prior to heart surgery, scheduled for as soon as I'm well enough. I just hope it doesn't coincide with the World Cup because I don't want to miss any of the matches!
Take care - Chickpea
Chickpea, I agree with Caroline, every time I get a new symptom,
I have myself done and finished.. then in my more rational state,
I tell myself not to panic and just wait to see how further the new symptom goes,
Nine out of ten times it goes as mysteriously as it came..
I don't know of anyone personally being treated with blood injections,
but I have heard of many that have,
I'd be guided by your consultant for now, and try to relax,
that will do you more good than bad for your coming operation,
which I hope will be soon for you, and that you can get back to normal quickly.
Ps ..your health comes before The Cup !!!
Dolly
Good to hear from you, Chickpea! Hopefully you are feeling a bit stronger now, and will be able to have the corrective surgery soon.
One of my earlier rheumatologists told me that anemia in one of its several forms is often present in all auto-immune diseases, not just Sjogren's. I don't know why that is. Osteopenia/osteoporosis also is often associated with auto-immune disease. There may be some intrinsic reason, but both are certainly complicated by medications, lack of adequate systematic exercise, and other factors resulting from auto-immune conditions.
Genko
Dolly,
Do you remember the name of the liquid iron you take? I am using SlowFe, but it is constipating.
I just got some cast iron pans from Walmart. I'm going to cook spaghetti sauce (actually everything) in them (let the sauce simmer for a long time and absorb the iron from the pan.)
My ferritin level is 19 which is normal but low. In 2005 my ferritin level was about 120. I wonder where those 100 points went!
I have been very fatigued. A doctor friend told me that 100 would be a good level.
When I speak of fatigue--this is how I experience it: the muscles in my legs feel sluggish and do not have energy to walk; also my brain is not that sharp or sharp for much shorter periods and then needs to rest.
Livvie2
Quote from: tuckerdog on October 10, 2009, 12:52:58 PM
I just came from our Houston SJS meeting. I may have the answer. The rheumatologist who was speaking said that SJS can cause us to not secrete enough stomach acid. If there is not enough stomach acide we can become iron deficient because without sufficient acid iron will not absorb well.
Tuckerdog
Bingo
I take HCI supplements with every meal, it has mellowed out all my GI issues of the past. I was always slightly anemic and had low ferritin levels until I started on HCI on the recommendation of an Osteopath.
HCI=hydrochloric acid
I also use biotene mouthwash with natural enzymes just before I eat, since digestion starts in the mouth (of normal people) and I figure I can use all the help I can get.
I used to have indigestion and took prilosec and zantac. Now the only time I need zantac is when I eat out and don't take HCI. I no longer use prilosec which helps save a little money each month.
PS: low grade systemic candida infections cause anemia also.
Iron needs B12 and intrinsic factor( from your stomach) in order to absorb. Are you taking B12? Vitamins for women during pregnancy has both, and really works to elevate iron level.
I take 2000 mg Vit. D daily. When I feel a cold coming on, I take 50,000 mg to knock it out. Great stuff!
Hope this is helpful!
Pegasus
Babs,
Many years ago my iron was completely depleted!! Even my "back up" ferritin levels were non existent!! I had to be put on iron pills and that was a true misery!! The abdominal pain was unbelievable!! Nevertheless, today my iron levels seem to be better. This was diagnosed way before I was dx with Sjogren's.
Barrie