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Back After 5 Days In The Hospital


Rene S.
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Hi. Well, I had my vacation for the summer in a place where no one should have to stay! My cardio called last Thurs (after seeing him on Tues) and said he wanted to admit me to the hospital because he was so concerned over my weight loss. Well, i have never felt more like a human pin cushion/guinea pig.

Did the gastric emptying study (eat radioactive egg!) and I have a severe case of gastroparesis. Explains the constant nausea, lack of interest in food and getting full and sick fast and inability to gain weight.

I'm to follow up with a known specialist shortly. For now they have told me small meals frequently. Easier said than done.

Also, my ANA came back high and are testing me for lupus and sclerderma.

My main concern is that my ferritin level keeps dropping. It's now down to 6.7 and my hemoglobin (11.7), RBC (3.94) and Hemocrit (34.5) have also dropped.

I'm to start on slow-fe iron supplements (47.5mg). Of course, I worry over reactions. I always thought that post menopausal women shouldn't take iron supplementation? I'm to take one a day and perhaps up it to 2. Is this too high a dose?

Is any one on iron supplements that is post menopausal? Any side effects to the meds?

Also, since my b/p tends to run on the high side, is there a problem with iron supplements and b/p?

I'm also now experiencing severe dizziness and lack of coordination, along with shortness of breath, headache, tachycardia (more so than usual), palpitations and some numbness in finger tips and toes. This has me concerned since it's only been for the past few days. My family dr (who isn't the best) thinks it's from the anemia but I'm scared that it's symptoms of a stroke. I know, I worry too much.

Also, I now seem to have developed esophogeal spasms but I feel as if they are coronary spasm (variant). The dr. says wait till I see the new dysautonomic specialist who may be able to shed some light on this.

This is so frustrating. It seems to me that more and more symptoms are developing over time.

Can anyone relate to the post menopausal anemia and whether or not you are supplementing with iron? How much and which brand?

Thank you all for being here for me.

Rene

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Hi Rene, I have had problems with gastroparesis, but sometimes I do better than others... I'm at a decent weight now, if anything I'm a bit overweight. My ANA consistently runs high and stains pink and speckled--they've tested me for scleraderma and lupus too... My great aunt (grandmother's sister on mom's side) died from scleraderma. However I'm pre-peri menopausal right now. Dr. Grubb has forewarned me that when my hormone levels drop off post menopause, I will probably experience significant increases in symptoms of my autonomic issues.

Are you on any type of hormone therapy? For me, I think the risks of becoming completely incapacitated from dysautonomia outweighs the risks of hormone supplementation--again, for ME--we're all different.

Nina

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i have a lot of Gastro problems and i have lost A LOT of weight, with trouble gaining as well. I don't know if have gastroparesis or whatever, but i def have esophageal spasms, Acid reflux, IBS etc. I have found that so far i have had success getting more calories eating a diet high in healthy fats. I take flax oil(3-4tbspoons), and eat alot of almonds, and drink Orange juice every meal. You'd be surprised how many calories those additions can add. For example a bag of almond crunch, i snack on that alot, is easy to eat and contains approx 800 calories right there. This may not work for you but it might!

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Personally, I would be concerned about the iron deficiency anemia. Two pills of iron/day if you are anemic is not too much. Your blood levels do have to be checked every three months so you are not overdoing it.

Iron is absorbed better when taken with Vitamin C. Iron can cause constipation.

Being anemic can cause dizziness, fatigue and make you more susceptible to illness.

I hope the doctors figure out how to address your gastroparesis issue.

Get better soon!

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I too have gastroparesis, esophageal spasms, heart burn, colitis symptoms... I'm broke from my mouth to my rear. I'm also anemic and used to take slow fe, but it wasn't regulating so now I'm on FE C (iron with vitamin C for absorbtion.) not sure if its helping yet. As for the small meals throughout the day, I too was hesitant. I'm never hungry and how do you eat that much? But my sister-in-law helped me get on a schedule. When I first wake up I'm supposed to drink an ensure and eat an orange, banana, or grapefruit. Then at 10 or 11 another fruit. Noon is a small lunch. 2 or 3 is a fruit. 6 is dinner. Then a snack before bed. Basically it is the equivalent of eating one meal scattered out all day. It really helps.

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Hi Rene, I have had problems with gastroparesis, but sometimes I do better than others... I'm at a decent weight now, if anything I'm a bit overweight. My ANA consistently runs high and stains pink and speckled--they've tested me for scleraderma and lupus too... My great aunt (grandmother's sister on mom's side) died from scleraderma. However I'm pre-peri menopausal right now. Dr. Grubb has forewarned me that when my hormone levels drop off post menopause, I will probably experience significant increases in symptoms of my autonomic issues.

Are you on any type of hormone therapy? For me, I think the risks of becoming completely incapacitated from dysautonomia outweighs the risks of hormone supplementation--again, for ME--we're all different.

Nina

Hi Nina,

Yes, my ANA was "speckled". Glad you didn't test positive for lupus or scleraderma.

As for the hormones, having gone through very early meno at 43, I was supplementing with HRT for 5 years and when this dysautonomia struck back in Oct (I had one v-tach incident) they threw me off the hrt and low dose lexapro. Set my body into a tailspin. I tried back in April to get back on the hrt and I felt lousy. I wish they would have left me alone! Nina, how do you increase your appetite with the gastroparesis? I'm supposed to see a Dr. Fisher at Temple next week. Hopefully he will have an answer because I really need to get the weight up!

Be well!

Rene

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i have a lot of Gastro problems and i have lost A LOT of weight, with trouble gaining as well. I don't know if have gastroparesis or whatever, but i def have esophageal spasms, Acid reflux, IBS etc. I have found that so far i have had success getting more calories eating a diet high in healthy fats. I take flax oil(3-4tbspoons), and eat alot of almonds, and drink Orange juice every meal. You'd be surprised how many calories those additions can add. For example a bag of almond crunch, i snack on that alot, is easy to eat and contains approx 800 calories right there. This may not work for you but it might!

I just wish I could get an appetite to eat! Drinking ensures are getting old! OJ really affects my reflux. I will look into the almond crunch. And I do eat almond butter straight out of the jar!

Thank you!

Rene

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I too have gastroparesis, esophageal spasms, heart burn, colitis symptoms... I'm broke from my mouth to my rear. I'm also anemic and used to take slow fe, but it wasn't regulating so now I'm on FE C (iron with vitamin C for absorbtion.) not sure if its helping yet. As for the small meals throughout the day, I too was hesitant. I'm never hungry and how do you eat that much? But my sister-in-law helped me get on a schedule. When I first wake up I'm supposed to drink an ensure and eat an orange, banana, or grapefruit. Then at 10 or 11 another fruit. Noon is a small lunch. 2 or 3 is a fruit. 6 is dinner. Then a snack before bed. Basically it is the equivalent of eating one meal scattered out all day. It really helps.

Chrissy, sounds like we're in the same boat. Yup, from the mouth to the rear. Thanks for the suggestions. They did say in hospital that small frequent meals vs. large meals but yet when I was there they were giving me large meals with 2 ensures included! No way was that happening!

Rene

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Thanks, Futurehope. I appreciate your advice! I did take one Slow Fe today and it might be my imagination but I feel even more nauseated! My dr. did tell me she wanted my blood rechecked in 3 months.

Rene

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Thanks, sweet Jenn. It s was the 2nd cardio but he never followed through! Just gave me a list of specialists to see via his NP.

Hugs back

Rene

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RENE,

no wonder you have been a mess sweetheart! hey, I was just in for 4 days.Too bad we weren't together! I was on slow flow Fe last starting last summer summer when my ferritin level was 4, as I could barely walk, or do any anything. It's a symptom when your iron is so low. I just had another test today as I started abnormal bleeding again. I started to have symptoms again.

the doc said the combo is the best for people like you and I sensitive (i'm actually allergic to full strength iron pills ) Your iron is what make your heart work right. I was so low that they were going to do a blood transfusion. I started beans and other foods high in iron. Never take more pills or hesitate about taking then as iron levels and being anemic make you feel terrible.

Google it for yourself and see. My ana is very high. They are always waiting for Lupus or sojourns syndrome or some autoimmune disease to pot out with me. HANG IN THERE GIRLFRIEND! I missed you and hope they are on to some thing. I wish you well.

blessings and love,

bellamia~

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i have a lot of Gastro problems and i have lost A LOT of weight, with trouble gaining as well. I don't know if have gastroparesis or whatever, but i def have esophageal spasms, Acid reflux, IBS etc. I have found that so far i have had success getting more calories eating a diet high in healthy fats. I take flax oil(3-4tbspoons), and eat alot of almonds, and drink Orange juice every meal. You'd be surprised how many calories those additions can add. For example a bag of almond crunch, i snack on that alot, is easy to eat and contains approx 800 calories right there. This may not work for you but it might!

I just wish I could get an appetite to eat! Drinking ensures are getting old! OJ really affects my reflux. I will look into the almond crunch. And I do eat almond butter straight out of the jar!

Thank you!

Rene

Yeah almond crunch tastes amazing. You can get it also from iherb.com i order snacks from there, also pumpkin seeds are high calories as well. These all have omega-3's which are good for you. Also try flax oil by the tablespoon, 1 tablespoon = 120 calories with great omega-3.s Also for orange juice Try low acid no pulp orange juice. Its alot less strong that regular OJ and has same calories and better taste in my opinion. So far all of these have been good for me, and i think i feel a bit better sometimes(MAYBE) because of these foods. I also have been eating Japanese sticky rice, delicious and seems to be acceptable for my body also. You can get this in microwavable forms at some stores. Those are the main things i've been using as a staple for my diet, i also eat a lot of fruit. Hopefully some of these things will work for you for extra calories! Also i usually have no appetite but it has slowly increased since i have been lifting weights and eating more fats. But the real trick to gaining weight is consistency, which is HARD for us. Oen day we feel so terrible we can't eat, the next day we eat fine, so therefore we get nowhere. Just gotta keep on trying everyday thats what i am trying my best to do.

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I've been tested for every autoimmune disease you can think of and I always come up negative... which I suppose I'm glad about b/c those aren't any easier to deal with than what I've already been diagnosed with.

Rene, pm me to let me know about your appt with Dr. Fisher. I'm a Temple grad student--I'm down there often.

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rene,

since i've left the hospital, it hurts to eat. i only want liquid. i only lost 2 lbs. but all my liquids have high calorie content.

the ensure i put on the blender with milk, next i'll add fruit to it,

gatorade, chicken noodle soup, i need to listen to my body. it's grouchy now, stop eating at the first sign of pain. take my stomach meds

as hard as they are to get in me 3 times a day.

be careful with flaxseed oil, it contains estrogen, 3 tbs is a lot a day. many of us are estrogen sensitive and it makes our pots flare.

i will take one cap a day due to this, and being allergic to the fish oils.

make sure you take the slow fe on food first.

be well bellamia~ B):)

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Oh Rene,

I am not up to writing much, but thank goodness someone FINALLY took you seriously enough to admit you and take a look! I am glad they determined the cause of the I symptoms.... but now to treat it is another battle. In terms of the iron deficiency, be sure that you get that colonoscopy done to check for anything going on there. Have you had the occult stool cards to check for blood loss in the stool? The iron can cause a lot of constipation and GI upset, so start slowly with that, and as someone else suggested, take it with orange juice if you can (just be sure it is not the OJ with added calcium which would interfer with absorption of the iron). I also have a speckled ANA. I have had 3 doctors in the past month tell me to re-consult with a rheumatologist because they feel like with all of my symptoms, there must be something rheumatological going on. I have been worked up multiple times over the past 5 years with no specific findings. Good luck honey - hang in there. I am sending prayers and a smile!

~ Michelle B)

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