Author Topic: continual low HB  (Read 917 times)

Offline sue

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continual low HB
« on: January 23, 2010, 12:06:09 PM »
I am having continual problems with a low HB.  Like most people I suffer with nosebleeds and gut bleeds.  I have regular iron infusions every three weeks and additional blood transfusions when required. This does boost my HB in the short term  but after a couple of weeks I am back to square one with an HB that is rarely  above 8.5 and at the moment is 7.3.  I take tranexamic acid, have had my nose lasered three times, my stomach is lasered every two months and my small bowel has been lasered at a specialist unit in London twice but still I am unable to maintain good HB levels which means I struggle at times.  All my specialists are trying their best and my haematologist is being particularly helpful and trying everything he can to help me.  Does anyone have any ideas or suffer from the same problem?  I have tried many of the products suggested to reduce nosebleeds but without much success.

Offline Matt

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Re: continual low HB
« Reply #1 on: January 23, 2010, 02:21:07 PM »
Welcome to the site.

I'm probably being a bit dense here, but what does HB stand for?

Offline philbarto

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Re: continual low HB
« Reply #2 on: January 23, 2010, 07:48:07 PM »
HB haemaglobin or red cell blood count male 15 to 16 female 12 to 14 no of red cells to 100mg of blood low blood count breathlessness etc
SUE read member philbarto post about youngs procedure which should rid you of nosebleeds

Offline stevesmash

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Re: continual low HB
« Reply #3 on: February 07, 2010, 06:14:39 PM »
Hi Sue, My HB levels never seem to get above 8. Ive had transfusions & lazer treatment with the constant use of iron tabs. Every time the levels seem to rise I am knocked back with a big bleed. Has your GP refereed you to the heamatologist and has any further treatments been advised. I would seriously think twice about the Young proceedure as I dont think I could cope with having my airways completely blocked off. The Tranex acids help stem the flow of blood but still go to work with limited confidence of keeping a clean shirt.
Good luck Steve.

Offline Erica

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Re: continual low HB
« Reply #4 on: March 10, 2010, 09:44:04 PM »
Hi
I have been attending the hospital for years now. I am lucky in that my ENT doctor diagnosed HHT and refered me to heamatology unit at the Royal. They have been terrific.  At one time my ferratin level was undetectable but at my last visit it was the highest it has been in years. I have had several laser procedures to both nostrils but the last one just made things worse. I had Youngs Proceedure to the right nostril hence the better levels last time.
KEEP TAKING THE IRON TABLETS!
You do not realise how tired a low HB level effects you. You begin to think it is normal. It wasn't until mine were good that I realised being breathless climbing a slight incline was not normal

Offline stevesmash

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Re: continual low HB
« Reply #5 on: March 24, 2010, 07:52:55 PM »
Hi, I may be teaching you all to suck eggs, but i have changed my iron tabs to slow release "ferrograd" for 2 month and no stomach probs!

Offline Carolanne

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Re: continual low HB
« Reply #6 on: April 12, 2010, 06:01:56 PM »
Hi,
I too have a constant low HB, due to gastric bleeds.  These started after pregnancy 33 years ago and have never got any better.  I have had my stomach and duodenum ones lasered, but they do return, as they have on my lips and tongue and in my nose.   My nose bleeds are manageable and not only occur spasmodically. 
Eventually, having lived on an HB of between 5 and 8.5, averaging 7.5 for all these years, I was referred for intravenous iron weekly.  After over 2 years, I have finally got a ferritin (iron stores) level of between 49 and 65.  We aim for 100.  My HB has still gone up and down from 7.8 to 10.2 and averages 8.5 now.  The trick is to get some iron stores for the HB to pull on.   Without them your HB will continue to plummet.  I have also noticed that stress and infections pull on my HB.  I dont know why and neither do the consultants. 
This is the best knowledge I can offer you.
Regards...........