Latest test results

[Cja1956]

Hello, all, I had my routine blood work yesterday and luckily, I can say that my numbers are holding steady. My hematologist seems happy with my results since they have improved so much from when I started seeing her last year. But I still have bouts of fatigue, shortness of breath, and sometimes feel unsteady on my feet. So now she wants me to have an MRI of my brain and see a pulmonologist. I have had ET since 2008 and post ET MF, diagnosed last year. Everything was normal yesterday except for the following: LDH 276, RBC 3.07, MCV 118.2, MCH 38.4, and platelets 600. I thought having the symptoms mentioned above were normal when you have an mpn. I don’t understand what she wants me to have all these other tests. Can anyone shed light on this?

[socrates_8]

Hey Cindy...

You're right about the symptoms being oft reported in MPN, as they are etc...

Sounds like your anemia might becoming more pronounced (?)

Sounds to me that your doctor might be trying to understand why you are currently experiencing the problems that you are reporting to her(?)

Is she an MPN specialist?

Are you now on Ruxolitinib Cindy? And if so, what is your dose now?

Remember too, it is not always wise to look at our Blood Counts in isolation, but rather via trying to recognise their trending values, (mine usually go up & down like a small roller-coaster)

However, you do have a few rather interesting results in your bloods. Like you, my LDH is often too high, and my last few have ranged from 318-325. Your RBC are quite low at 3.07, (mine 4.06), however... what is really interesting are your other values:

MCV: 118.2 (Very high)

"What is an MCV blood test? - medlineplus.gov/lab-tests/m...

MCV stands for mean corpuscular volume. There are three main types of corpuscles (blood cells) in your blood–red blood cells, white blood cells, and platelets. An MCV blood test measures the average size of your red blood cells, also known as erythrocytes. Red blood cells move oxygen from your lungs to every cell in your body. Your cells need oxygen to grow, reproduce, and stay healthy. If your red blood cells are too small or too large, it could be a sign of a blood disorder such as anemia, a vitamin deficiency, or other medical condition."

MCH: 38.4 also quite high - makes me wonder if you are taking any supplements for B12 deficiency?

webmd.com/a-to-z-guides/wha...

"High MCH value can often be caused by anemia due to a deficiency of B vitamins, particularly B-12 and folate. Both of these vitamins are required by your body in order to make red blood cells. These types of anemia can develop if your diet is low in B vitamins or if your body does not absorb B-12 or folate properly"

Anyways, keep us Posted as to how things progress Cindy, stay safe & well out there...

Steve

[Cja1956 in reply to socrates_8]

Hi, Steve, thank you for your informative answer. You are a wealth of information. So to answer some of your questions.

1. I found my doctor last year on the mpnconnect website as the mpn specialist in my area.

2. I was on Ruxolitinib and hydrea when I first saw her but she took me off and put me on fedratinib, instead. My hmg was 8.9 last year, now it’s 11.8, which is normal.

3. My LDH was has been as high as 900 but, now, a little high but much improved.

I was taking a B12 supplement for a while, I think I’ll go back on it. I see several people mentioned it here.

Thanks again. I’ll keep you posted. Stay safe and well.

All the best,

Cindy

[jointpain]

As Steve says the very high MCV does indicate a serious vitamin B12 deficiency together with the breathlessness and unsteadiness I would ask for a pernicious anemia test. Immediately.

Wishing you all the best.

[Cja1956 in reply to jointpain]

Thank you. I appreciate your response and advice. I’m going to start taking my B12 supplement again. I didn’t know there was a specific pernicious anemia test. I’ll look into it.

[jointpain in reply to Cja1956]

You should hold back on the B12 supplements until a B12 serum blood test is done

[JediReject]

Hi Cindy , , bit of a mixed bag there though I love the fact you honed in on the positive aspects which are your overall improvement and you remain stable. . OK so a couple of counts are high / low and I guess along with your shortness of breath and unsteadiness your Hem is wanting to rule out any other causes.

Sometimes we can focus solely on our bloods and think any symptom is directly related.

I'd be happy if my Consultant was airing on the side of caution and testing my vital organs if only to check all is in order.

Good Luck going forwards

Chris

[Cja1956 in reply to JediReject]

Thanks, Chris. Good to hear from you. This is the second time she suggested the MRI, so I guess this time I’ll do it. And I guess it can’t hurt to see a pulmonologist.

Thanks again. Hope all is well.

Cindy

[Wyebird]

Maybe you are unsteady on your feet due to shortness of breath- I still get short of breath . That’s my fatigue warning. I used to collapse- lung function tests revealed hypoventilation syndrome . Physio cured it.

At one time I also became lightheaded and a reduction in anagrelide corrected that

[Cja1956 in reply to Wyebird]

Thank you. My old hematologist put me on anegrelide a while ago and I got heart palpitations from that. Perhaps the physical therapy will help with my breathing. That’s something I can look into, as well.

[Wyebird in reply to Cja1956]

I reduced anagrelide from two a day to 10 a week. After a year and good bloods I stated I felt spaced out. So anagrelide was reduced to 9 a week and hydroxi increased. Straight away I felt better. Just a drop of one tablet made a huge improvement. It seems that my body took a year to reach saturation point.

Also I was collapsing prior to ET diagnosis. Proof that fatigue isn’t in my head and is caused by ET.

Prior to ET my body was able to cope with improper breathing technique.

[Cja1956 in reply to Wyebird]

Yes, I agree. It takes a while to balance out the meds. Glad you’re doing better.

[Wyebird in reply to Cja1956]

I suggest you don’t ask for a physio but for a lung specialist. I did lung function tests then saw him. He in turn referred me for physio. Good luck

[Cja1956 in reply to Wyebird]

I agree. My doctor prescribed lung function tests with a pulmonologist. So I’ll probably go that route.

Thanks.

[Wyebird in reply to Cja1956]

Good but if results negative maybe worth mention the syndrome xx

[hunter5582]

You have a very smart hematologist who is thinking holistically about your health. MPNs are complex disorders and we often present with co-occurring disorders that can complicate the situation. A brain MRI and pulmonology consult are logical and prudent steps. The only thing I would suggest is to consider the whole range of nutrition in what is going on, not just Vitamin B. You may find that there are defficiencies you are not aware of. When my Integrative Med doc ran a NutrEval panel, we found I was severely Vit. B/Folate deficient, moderately Vit. D and Magnesium deficient, and had significant elevation in Mercury levels. Nutrition does really matter and is often overlooked.

All the best.

[Cja1956 in reply to hunter5582]

Thanks, Hunter. Always appreciate your advice.