Questioning lab results? Hoping someone can help!

[Milescircus]

I’m down to getting iron transfusions only monthly now along with b12 injections and don’t seem to have any more energy or I can’t seem to tell or feel any difference. I’m tired or if I sit down I’m out.. as long as I’m up I can do things.. I do most of the things here at home as fortunately I’m able to stay home. I have Autoimmune Atrophic Gastritis, or Chronic Gastritis I guess, and Hashimotos, severe Restless Leg Syndrome, I take a lot of medicine already but I do take Lasix and Potassium (Klorcon) for a past diagnosis shortness of breath on exertion and edema of the lower extremities. It was 2 years ago and I could barely walk or even eat without stopping to breathe. I had a BNP and a chest X-ray, BNP was 30 then, chest X-ray was negative, later had an echo, negative, then had a positive D-dimer and a Chest CT that was negative. I’m living in a different state now, still on same medications, edema under control but 2 weekends ago I started having shortness of breath again. Walking up and down the stairs, one end of the house to the other and just regular activity. I already had an appt with my primary care dr the following Monday for a yearly exam so I planned to bring it up then. My blood pressure was normal, nurse marked my resp rate as 16 and pulse ox as 99% however I know it was 97% ( you know nowadays you can see your whole visit on my chart apps) I explained past experiences and new problem and she sent me for BNP and chest X-ray. I went that day, BNP was 240, chest X-ray was negative. The lab result for the BNP showed 0-249 as the cut off? But from what I read anything above 50 is suspicious? I never even got a call about the results. My question is does anyone else have experience with this? I’m a 45 year old female. I know age plays a part with lab cutoff. I know that there are really high numbers, I’m not trying to say mine is very high just wonder if it’s high enough to warrant concern? Thanks for anyone’s help!

[Foggyme Administrator]

Hi Milescircus. So sorry to her that you're feeling so unwell at the moment.

It sounds like you've got quite a complicated medical history and given what you say above, I don't think that you current problems are due to your Pernicious Anaemia or B12 deficiency.

This forum mainly deals with Pernicious Anaemia and B12 deficiency so it's unlikely that forum members will be able to address your questions in any detail.

But just a couple of thoughts...

Just wondering about your previous positive D-dimmer test - are you on any blood thinners (warfrin etc.). Here's more information about the D-dimmer test:

labtestsonline.org/tests/d-...

BNP blood test - this is usually done to assess problems with the heart or circulatory systems and DNP levels can raise or lower according to disease activity. The fact that you have become more unwell and that your previous BNP level of 50 is now raised to 249 may be indicative of changes tokyournundelying medical condition. When treated or medicated appropriately BNP levels can drop - and that can obviously improve symptoms and stabilise your condition.

Here's more information about BNP tests:

labtestsonline.org.uk/tests...

I hasten to add that I'm not a medic and these are issues that do not normally appear in this forum, so I can only comment in very general terms about the BNP blood test. And being UK based, I have very little knowledge of the healthcare system in the USA, so can't suggest further actions you could take.

As a first step...I would suggest that your go back to the doctor you consulted to further discuss your current health issues and the changes to your BNP levels. Your doctor should want to investigate further (cardiac stress test / lung function tests etc.) or perhaps adjust or change your current medications. And they will be able to consider the changes to your DNP levels and your current health issues in conjunction with your full medical history.

Hope you get the help you need and that your health begins to improve soon.

Good luck and take care.

👍

[mchenrydad in reply to Foggyme]

Shortness of breathe can point to cardiac functions. Just had this problem. Went in failed a stress test and wound up having three stents placed. Pernicious Anaemia does have an affect on your heart. As my neuropathy gets worse, so doe my heart.

[Foggyme Administrator in reply to mchenrydad]

Hi mchenrydad. Just to clarify...

My reply to mchenrydad was suggesting that her current symptoms are due to other health issues (cardio-vascular / pulmonary) rather than being the symptoms of B12 deficency (bourn out by test results etc.).

So...not my intention to debate the possible connection between CVD and B12 deficency (low folate/high homocysteine being one possible cause) but sorry, haven't the time to debate that now.

Hope the stents are working for you. About the neuropathy - if this is worsening, just wondering if you've seen a neurologist? Many causes for neuropathy, B12 deficency being only one...and if B12 is the cause, treatment with th right frequency of injections usually halts progress (even if it doesn't cure all the neurolgical damage / symptoms).

So...a couple of possibilities: either you need more frequent B12 injections or there may be some other cause for the worsening peripheral neuropathy. Worth investigating.

👍

[mchenrydad in reply to Foggyme]

After going thru Mayo and numerous other DR's They have told me that my heart issues are caused by severe PA that went untreated for yes. Even on shots once a week mine still progresses. I have had several heart attacks, and arteries clog up constantly. Only symptom is loss of breath and an increase in the . " Sighs"

My point is due to the PA, Doctors ignored clogged arteries until to late.

[Foggyme Administrator in reply to mchenrydad]

Sorry you've had such a terrible time...doctors here are not much better...the symptoms of PA and / or B12 deficency (from whatever cause) often get ignored or misdiagnosed for years. And once it is diagnosed, the possibility that symptoms may have other causes then gets ignored too (as happened to you).

Worth noting that many here have to have injections daily (or even twice daily) to get and stay well - perhaps your doctors would consider increasing the frequency of your injections. May or may not make a difference - but surely worth a try?

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

👍

[Milescircus in reply to Foggyme]

Hello foggyme, thanks for taking time to respond. I did realize that this forum dealt mostly with PA when I posted I just knew that everyone is always so helpful and knowledgeable I just thought possibly someone might have a breadcrumb for me to follow. I am not on any blood thinners following the positive D-dimer, as I suppose they felt it was negative and chest CT was negative. I belong to several forum here on health unlocked but looked and didn’t see anything along the lines of cardiac to ask my question. So thanks for your answers and for the info from mcgenrydad as well.

[Foggyme Administrator in reply to Milescircus]

Hi Milescircus. Please don't worry about posting an 'off-topic' question. People often do and I only mentioned it so that you wouldn’t be too disappointed if you didn't get too many replies 😉.

You could try posting your question in the British Heart Foundation forum. If you include 'Qestion about Heart Failure' in the title, that should attract forum members who have had BNP tests before, and they may be able to share their experiences with you. Here's a link to that forum:

healthunlocked.com/bhf

And here's a link to the British Heart Foundation website - may find some useful,information there too.

bhf.org.uk

Not sure if these count a breadcrumbs...but nibble away and see 😉😀.

I sincerely hope that your doctors in the USA take you seriously (because they should) and find a way to lessen your current symptoms and help you back to better health.

Very best of luck...I'd be interested to hear how you get on.

👍

[Milescircus in reply to Foggyme]

Thank you for the info. I will keep you posted.