Discussions By Condition: I cannot get a diagnosis.

Anaemia, CHF, Oedema, Gastric ulcer

Posted In: I cannot get a diagnosis. 34 Replies
  • Posted By: abbiesmum
  • October 20, 2008
  • 06:02 AM

Hi

I'm hoping someone could shed some light on my symptoms/conditions as I've been ill for almost a year now.

I am a 37 year old female.

In Dec of last year I was admitted to hospital with a Hb level of 2.9, lower limb oedema and heart failure symptoms (presumably from the anaemia).

I was treated with a blood transfusion of 2 units and referred as a day patient to a haemotologist.

From Jan - May I was treated with iron infusions which did not increase my Hb levels to more than 6.0, so I was then given a 'total body dose' of iron (ferritin?) which helped enormously and increased it to 10.5 and then 12.2 (within 3 weeks).

In the meantime (Feb) it was discovered that I had a gastric ulcer of 4-5cm in diameter and I have been taking Omeprazole (initially 40mg, increased to 80mg recently) since. This was not caused by any underlying H Pylori infection.

I have chronic diarrhoea, I vomit almost daily and suffer from extreme nausea. The diarrhoea is being treated by taking coedine phosphate 60mg 4 times daily. I also take Tramadol when the pain is very bad, however, I tend to avoid this as it causes me to sweat profusely.

Over the past 3 months my Hb levels have been falling again (now at 7.5) and I've been suffering from lower leg and ankle oedema, a very swollen abdomen and breathing difficulties when I exert myself. (to the extent that climbing a staircase is fairly laboured for me) This is also especially bad at night and I find it difficult to breathe if I am laying flat.....it is much better for me if I am propped up in bed. It almost feels as if my swollen abdomen (rather than the anaemia!) is causing these breathing difficulties as my diaphragm feels pushed up into my lungs.

Incidently, I was asthmatic as a child, but have had no problems since the age of 16 or so and do not wheeze when I am having these breathing difficulties.

I have had several attempts at further endoscopies which have failed as I have extremely bad veins and any sedation has always been troublesome. I have been unable to tolerate an endoscopy without vomitting profusely and am awaiting a barium meal examination to check on my gastric ulcer.

My haemotologist has now suggested that I have a CT scan and insists that one should have been requested before now. I noticed that she had written that I had an enlarged liver on examination and 'progressive CHF' (I can only find a reference to 'congestive heart failure' if I google this term).

I am due to have a further 'total body dose' iron replacement on Friday of this week and will see the consultant again at this time.

Could anyone shed any light on what they think is wrong? The logical thing for me to do would be to ask, but I'm almost too scared to (if that makes sense!). I feel out of my depth now as I've been to my GP on various occasions and have always been palmed off with 'you have an ulcer and you're anaemic'.

Can anaemia cause heart failure? Should I still have such a large, problematic ulcer after all this time? Or is there possible something more serious wrong with me?

I feel as if I've been ill for such a long time and no end is in sight......any suggestions/possible questions to ask would be greatly appreciated.

Many thanks

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34 Replies:

  • Has anyone looked at celiac disease? http://www.springerlink.com/content/c165771n4444028v/ Also: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1263 Replies
    • October 20, 2008
    • 07:21 PM
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  • Hi Yes, I've been tested 3 times for this - mainly because I'm not very tolerant of red meat - but all the tests came back clear. Thank you so much for your reply.:)
    abbiesmum 24 Replies
    • October 21, 2008
    • 04:44 PM
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  • I'm wondering if you may be having a post-transfusion reaction.
    aquila 1263 Replies
    • October 22, 2008
    • 04:27 PM
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  • The last transfusion I had was in Jan of this year. Any other treatment of my anaemia has been with iron infusions. With regards to Lyme disease - it's almost unheard of where I come from and I've been nowhere near any places I'd be likely to pick this up. Thanks for the suggestions:)
    abbiesmum 24 Replies
    • October 22, 2008
    • 08:42 PM
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  • This is a long shot, but take a look here: http://www.haenet.ro/dl/msm.pdf Your abdominal pain & edema, possibly in your larynx, may be symptoms of hereditary angioedema. Your hematologist may want to check this out for you.
    aquila 1263 Replies
    • October 23, 2008
    • 05:14 PM
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  • Hi Aquila I apologise for the length if time ive taken 2 apolgise.......ive been n hosptial for 5 days. I ave akse my Dr about the condition you decribed as he claims he has already tested me (ty for the suggestion tho.) I now have mocarditis which is being treated by beta-blockers and painkiller. Ty for your continued replys........they are very much appreciated, Kind regards Niccix
    abbiesmum 24 Replies
    • October 29, 2008
    • 11:36 PM
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  • So sorry. The other possibilities are tough to read about. But this may help you get a handle on it: http://www.medicinenet.com/myocarditis/article.htm I found an article on myocarditis related to ulcers, but I have no idea if it's related to your case. Has anyone mentioned Chagas Disease? You say you have had a blood transfusion. You can also get it from travelling outside of the US, like to Mexico or the islands? Try here: http://www.cdc.gov/chagas/factsheet.html
    aquila 1263 Replies
    • October 30, 2008
    • 06:34 PM
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  • I need to know what tests have been done.Standard tests for your condition(besides hemoglobin level,hematocrit,blood feritine level and hemoleucograma)should include:vit B12 test, gastroscopy,x-rays on empty stomach,barritated x-rays.I PRESUME your anaemia is caused by your ulcer or other condition you may have, related to your stomach.
    Anonymous 42789 Replies
    • October 30, 2008
    • 07:46 PM
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  • I would strongly advise people who have totally no clue about any of the conditions presented on this site to stop presenting scenarios which have absolutly NOTHING to do with the presumed condition.
    Anonymous 42789 Replies
    • October 30, 2008
    • 08:00 PM
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  • Med Stud, I've had : B12 - this was checked and initially low, so I was given a course of B12 injections. However, when it was re-checked the level was normal and my haemotologist has since mentioned that only 1 test isn't always reliable and there was probably no deficiency there in the first place. Repeat testing has always revealed my level to be within normal limits. Gastroscopy - I originally had a combined gastroscopy/colonoscopy which only revealed a gastric ulcer. I have had 2 follow up gastroscopies which have only confirmed a diagnosis of a worsening ulcer. A cardiologist I have recently spoken to mentioned that I also had damage to my oesophegus (sp?) which he believed was caused by 'gerd'. However, when I mentioned this to the physician I see for the treatment of my ulcer, he seemed to disagree. The same cardiologist happened to mention that taking high levels of Omeprazole (80mg) could possibly be causing me a problem with iron failing to be absorbed. X-rays/Barriated X-rays - I have had 2 barium meal x-rays which were done on an empty stomach, but no x-rays without barium. Dr's seemed to think this would be of no benefit since they had already asscertained a diagnosis of gastric ulcer. I've also been tested for a condition which I'm at a loss to remember the name of. Apparently this would cause excess gastrin production and cause both gastric and pancreatic ulceration. This was done with a series of blood tests first thing in the morning over 3 consecutive days. As far as I'm aware these came back within a normal range. Yes, the general consensus so far seems to be that my anaemia is caused by the gastric ulcer I have. However, both the haemotologist and cardiologist I see now seem to be looking for other causes as the anaemia has been so severe and hard to treat. It's been mentioned more than once to me that such ill-health is unusual from a simple ulcer which is being kept under control with medication. I understand that they think the recent cardiac problems I have stem from the Coxsackie virus (which I incidently had for almost 4 years as a child, causing peritonitis and kidney problems) and have sent throat swabs and stool samples away for analysis. In the meantime I have been prescribed Atenolol to control any tachycardia. I had a sneaky peek at the ECG readings whilst I was in hospital and all of them indicated either a 'QT' or 'T wave' problem and contained the words 'abnormal ECG'. (At one point I was having an ECG done every 15 minutes in addition to be remotely monitored in a coronary care unit.) This was without exception....no reading was without these words. However, when I enquired as to why this was I was told that the readings were 'normal'. I found it extremely difficult not to become frustrated at the apparent lack of information given to me as my husband was told on the phone by nurses that I had a 'cardiac problem' (although he was given no other information). I am due to have a week long period of ambulatory cardiac monitoring as before this recent diagnosis of myocarditis, I had been suffering from 2-3 hour long incidences of 'SVT' and angina type pain. When the pain is at it's worst my heart rate can be as high as 185 bpm. I had always assumed this was due to such prolonged periods of anaemia and will continue to do so until I'm told otherwise. This also seems to co-incide with me having quite severe oedema to my lower limbs and face (with up to 9lbs of weight gain at it's worst). Every symptom seems to be connected in some way and I can't help feeling that there's a simple explanation which the Drs I've seen so far are missing. I'd appreciate any input of value. I know that there is absolutely no way that I have Chagas since I am not in the USA and havent visited either there or South America in recent years. I'm also in a country which carries almost no risk/reported cases of Lyme disease, live in a city and haven't visited any area of the world where Lyme's is prevalent. To be honest, I feel so ill at this time that I'm willing to sift through the well-intentioned 'scenarios' in the hope that someone may come up with something that's perhaps relevant to my situation. I apologise for the length of this explanation! Thanks for taking the time to reply.
    abbiesmum 24 Replies
    • November 4, 2008
    • 01:56 AM
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  • I would strongly advise people who have totally no clue about any of the conditions presented on this site to stop presenting scenarios which have absolutly NOTHING to do with the presumed condition. I mention chagas disease because althought it is rare, tranfusion-related chagas is not unheard of: "Seven cases of transfusion-associated transmission have been documented in the United States and Canada during the past 20 years; all occurred in immunosuppressed recipients (3--6). Because acute infections often are asymptomatic and the level of awareness of Chagas disease among clinicians is low, cases of transfusion-associated transmission can go undetected." Source: MMWR, at: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5607a2.htm
    aquila 1263 Replies
    • November 4, 2008
    • 05:33 PM
    • 0
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  • Aquila, I had disregarded this as I'm not in the US and can find no references to this condition on any UK website. Would I be correct in assuming that any risk is low if I am not in an area of the world affected by this transfusion complication? Thanks:)
    abbiesmum 24 Replies
    • November 4, 2008
    • 09:03 PM
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  • Aha! Well, greetings from America, British friend! Sorry for the assumption that you were in the US. We are ever so Americentric! Mea culpa. I don't have evidence to answer your question, but people travel the world these days as a matter of course, and yes, I speculate that the same risk is the in the blood supply worldwide.
    aquila 1263 Replies
    • November 5, 2008
    • 09:05 PM
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  • I don`t mean to scare you but the amount of oedema at your lower limbs indicate a decompensated heart failure(which can be caused by a multitude of heart diseases).Do you happen to wake up in the night with a suffocation sensation?
    Anonymous 42789 Replies
    • November 6, 2008
    • 09:15 PM
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  • I don`t mean to scare you but the amount of oedema at your lower limbs indicate a decompensated heart failure(which can be caused by a multitude of heart diseases).Do you happen to wake up in the night with a suffocation sensation? Yes, all the time. I'm hoping this cardiac monitor will shed some light on it. Again, thanks for your reply:)
    abbiesmum 24 Replies
    • November 7, 2008
    • 03:02 AM
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  • I don`t mean to scare you but the amount of oedema at your lower limbs indicate a decompensated heart failure(which can be caused by a multitude of heart diseases).Do you happen to wake up in the night with a suffocation sensation? Hi I dont mean to bother you, but do you have any more advice regarding this? Thanks
    abbiesmum 24 Replies
    • November 15, 2008
    • 05:20 AM
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  • Aha! Well, greetings from America, British friend! Sorry for the assumption that you were in the US. We are ever so Americentric! Mea culpa. I don't have evidence to answer your question, but people travel the world these days as a matter of course, and yes, I speculate that the same risk is the in the blood supply worldwide. Oh no! Don't be silly.....I'm not offended in the slightest! I had my husband ask about this when he went to donate blood and the transfusion nurse said that she'd never heard of any UK-wide cases. In fact, she had to call someone and specifically ask about the condition/disease as she'd never heard of it. Hopefully this means that I'd be at a very low risk of contraction, but thanks for the info anyway. I always appreciate the time and effort people put into any replies. Congrats (?) on your new president!
    abbiesmum 24 Replies
    • November 15, 2008
    • 05:24 AM
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  • Yes anaemia can cause heart failure and CHF does stand for congestive heart failure. The difficulty breathing you are having is also caused by the heart failure as are the limb oedema and swollen abdomen. The gastric ulcer might have been the original cause of the anaemia but the swollen liver indicates some damage there too. Liver damage leads to difficulty in your blood clotting which would have caused you to lose more blood from your ulcer aggravating the anaemia. Personally I would start looking for a cause of the underlying liver problem such as Hepatitis B or C. Liver damage may also have been caused if you have a tendency to drink a lot of alcohol. You say that you don't tolerate red meat very well which would indicate that you don't eat a lot of it. That would aggravate the anaemia as red meat is your body's best and most usable source of Iron. Iron is essential for making Haemoglobin. No haemoglobin means anaemia.
    gungwane 62 Replies
    • November 15, 2008
    • 08:22 AM
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  • 1)It`s the congestive heart failure that is causing the most of the symptoms.2)It seems to me that your doctors already forgot what they`d learned in medical school:the fact that Omeprazole is decreasing the iron absorbtion .Lower ph (acidity)is needed in Duodenum to increase fe solubility which anyway absorbs very small procentage from the daily intake(10 percent) 3)No ,your heart failure is not caused by anemia,but the anemia can agravate it,low hemoglobin(caused by low feritine) carries less oxigen to the tisues,heart (which already is impaired) has to beat more rapidly.4)What worries me most is you heart failure which a life threatning condition5)Start taking vit c and fish oil to increase the iron absorbtion,although it won`t increase much as long as the P.H is still up,problably you should take iron in perfusion,as long as you can`t give up on proton pump inhibitors(omeprazole) for the ulcer2)Have the doctors ruled out Talasemia?
    Anonymous 42789 Replies
    • November 15, 2008
    • 08:14 PM
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  • 3)No ,your heart failure is not caused by anemia,but the anemia can agravate itI beg to differ, heart failure is one of the presenting symptoms of severe Anaemia. The question is what is causing the anaemia. Its true though that coxsaccie virus may have caused some initial damage to the heart that reduced its ability to compensate for the anaemia.
    gungwane 62 Replies
    • November 16, 2008
    • 06:24 AM
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