Wellness

[I am still oxox]

I had a follow up with the Hematologist to go over the results of my bone marrow test, there is good news and there is vague news. After waiting 1 hour and 15 minutes for my 8;30 appt I finally got to talk to him,

I do not have Lymphoma but apparently my bone marrow is lacking in iron.

The doc goes on to say well the blood has to be going some where. 

You could have stomach, cancer or a bleeding ulcer or a few other things I did not even comprehend, and you need an endoscopy and a colonoscopy to see what is going on.

He was so matter a fact about all of this, no feeling or compassion.

I am going to see a second Hematologist right after New Years,  but I have no real answer and I can not help but worrying.

ETA - so of course I think every twinge or pain is a waiting sign of more trouble 

[software]

Sometimes  people never find the source of the problem.

So you eliminate the BIG stuff.

So glad you do not have lymphoma, but it is relatively easy to treat.

Let the doctor do their job, get your compassion from your family.

[Reba055]

Don’t get too upset. My ferritin (iron stores) tanks. I have to get iron infusions, yet my hemoglobin is ok usually. My B12 is also very low. They suspected bleeding from somewhere. I’ve had every test imaginable and it’s all ok. They have no explanation as to why it’s happening. So you will have to follow up to exclude things but all could be just fine.  I was diagnosed with MGUS which is a precursor to Multiple Myeloma but it is monitored and may or may not ever progress to that. As of now my bloodwork for that has improved. Good luck to you!

[Vivian]

About twenty years ago, I went to my yearly endoscopy at a cancer hospital in upstate NY. My father had died of gastric cancer and I got checked out every year because I exhibited some of the symptoms that my father did.

When I showed up, I was told that my doctor had retired and I’d be tested by one of his residents. No one had told me about this in advance but I had traveled for three hours and was not about to turn around, Results of the endoscopy were inconclusive. I might have had a pre-cancerous lesion but there was no certainty about it. I called the head of the department to get further information and she was clueless, but she offered to take me on as her patient. I said NO.

I switched to another doctor and hospital but to this day I do not know what that other endoscopy revealed. The fact that I am alive 20 years later makes me think that the iffy diagnosis of years ago was wrong. Nevertheless, it is very frustrating to deal with such incompetence.

[house_cat]

I had a similar diagnosis at age 13. They were never able to find a reason for it, but my condition has a name - which I've forgotten, but I'll find it for you.  Anyway, my point is that I'm still alive and kickin' at 60 years old.  I'm under the care of a specialist at UCLA Medical Center, but all he really does is check my blood twice a year and assure me that I'm fine.

What I'm trying to say is, don't jump to dreadful conclusions. 

[I am still oxox]

Thank you all for the responses I am feeling more encouraged

[Laura14]

@I am still oxox  A hard lesson I learned a few years ago is that the doctors and technology don't know what we expect them to know. 

For three years straight the medical community scared me to death with my mammograms until I finally realized that the real answer was the technology just isn't good enough to see inside for a true definitive answer from them. 

It's the best they can do at present and I wish someone would have just said that to me before I was looking around a holiday dinner table wondering if I was going to be there next year and paying lots of money I didn't have for more unclear tests.  

They do the best they can with the tools they have and then it's literally their best guess.  They can't or won't say that for liability issues and patients usually won't accept that answer even if it's the only one the doctor has.  

And as far as iron levels, I've been anemia prone all my life because I have a genetic trait for Mediterranean anemia which means my red blood cells are smaller and can't get the iron around my body like they need to.  

It sounds like he thinks you are missing blood which is why he is suggesting possible bleeding out in your stomach or intestines or some other place and it's just being excreted which would automatically lower your iron levels.

You would know if you have an ulcer or stomach bleeding.  That is zero fun to have.  And if no one has detected blood in your stools or urine, you're probably good there too on the cancer end. 

Keep jumping the hoops and hopefully you'll hit someone who has more experience who will look at your results and give you a better answer.  It's literally all you can do.    

Good luck!    

[hckynut]

@Reba055

I too need Iron Infusions and have had 30+ since 2008. Mine started from my bleeding Colon, which took 6  Colonoscopies and 2 Double Balloon Enteroscopies to find and repair. Also Anemic(7.1 hemoglobin) during much of that time.

Now up to 15 Colonoscopies and 5 Double Balloon Enteroscopies, 20 gallons of Go/NuLytley. My Hemoglobin now is up to 14.7-15.3, but even with those numbers my Ferritin sometimes drops down below my minimum, which is 36. When that happens I get another Iron Infusion. Had Anaphylactic Shock during 1 of them, and it was almost "lights out" for me.

Colon repair is still holding from the last one in 2016. I still check for blood loss every day as I know that Right Colon can start bleeding at any time. To me an Endoscopy or Colonoscopy is just another thing I need to do, and never give either much thought while waiting to have them done. Just another fact of my life.

Best to you,

hckynut

[hckynut]

@I am still oxox

Glad that Lymphoma has been ruled out. Neither an Endoscopy or Colonoscopy are painful procedures. My wife has had a Bleeding Ulcer repaired, and I have had my bleeding Right Colon repaired several times.

I understand very well the hours spent to find bleeding sources. Spent over a month in the hospital in 2008 having Colonoscopy after Colonoscopy done, along with swallowing a Camera Pill to try to locate the bleed. After 2 Double Balloon Enteroscopies, the bleeding was repaired and lasted for about 3 years.

Nobody likes the unknown, but many things in the Medical Field take many procedures to locate sources of problems. For me, I take a mental note of any new pain I experience, and mentally monitor it. If it continues, I see a doctor, and don't spend any time worrying about what it might be.

"every twinge or pain is a waiting sign of trouble"?  To me that is a waste of energy. If I got concerned about those types of things? It would/could be a 24/7 waste of my energy, and needlessly. I understand some people's worry, but that too is something anyone can work on to control. Needless stress is not good for anyone.

I hope you get your answer sooner rather than later.

hckynut

[SilleeMee]

When I was in my 30s I went completely bald for no apparent reason. I went to eight different doctors, some were GPs while others were specialists and one DO. I was offered anything from Rx sedatives to scalp injections and Rx topical treatments. Nothing made my hair grow back. I was bald for about a year until it started coming back on its own. So even if you seek the help of professionals to explain or give you a valid diagnosis, they may not always be able to help.

eta - I was never given a valid diagnosis for why I lost all of my hair...including one eye brow btw.