GP thinks I might have CLL Freaking Out

[jhatx]

Back in March 2019 my bloodwork came back with high RBC, Hemoglobin, and Hematocrit due to side effects of testosterone therapy

RBC6.11x10e6/uL4.14 – 5.80

Hemoglobin18.313.0 -17.7

Hematocrit55.637.5 – 51.0

Only other thing that was off was a Lymph count at 4.1. The test clinic recommends therapeutic phlebotomies and over about a 3 month period I do 5 of them.

Fast forward to October and I have more bloodwork done here are the results of the CBC:

CBC, Platelet Ct, and Diff 01

WBC 12.2 High x10E3/uL 3.4 - 10.8 01

RBC 5.93 High x10E6/uL 4.14 - 5.80 01

Hemoglobin 14.3 g/dL 13.0 - 17.7 01

Hematocrit 46.6 % 37.5 - 51.0 01

MCV 79 fL 79 - 97 01

MCH 24.1 Low pg 26.6 - 33.0 01

MCHC 30.7 Low g/dL 31.5 - 35.7 01

RDW 17.8 High % 12.3 - 15.4 01

Platelets 225 x10E3/uL 150 - 450 01

Neutrophils 37 % Not Estab. 01

Lymphs 54 % Not Estab. 01

Monocytes 7 % Not Estab. 01

Eos 2 % Not Estab. 01

Basos 0 % Not Estab. 01

Neutrophils (Absolute) 4.5 x10E3/uL 1.4 - 7.0 01

Lymphs (Absolute) 6.6 High x10E3/uL 0.7 - 3.1 01

Monocytes(Absolute) 0.8 x10E3/uL 0.1 - 0.9 01

Eos (Absolute) 0.3 x10E3/uL 0.0 - 0.4 01

Baso (Absolute) 0.0 x10E3/uL 0.0 - 0.2 01

Immature Granulocytes 0 % Not Estab. 01

Immature Grans (Abs) 0.0 x10E3/uL 0.0 - 0.1 01

Estradiol 19.7 pg/mL 7.6 - 42.6 01

I have an appointment at my regular doctors office in November to discuss my concerns. I am told that the anemia looking items are due to all of the blood donations and will work their way out on their own. I am also told that I always have borderline high lymph count and not to worry.

In December I go in for my annual physical and BW. Everything is about the same with minor improvement. I meet with a different doctor and he tells me he is very concerned with my bloodwork with my Lymphs at 5.6 and WBC at 11.4. He believes I may have CLL and refered me to a hematologist / oncologist. Of course, I can’t see him for a few weeks so I sit in a mental hell.

Over the last 5 – 6 months leading into the bloodwork results I have been in a crazy depression, anxiety, dark place like I have never been before. So lots of extreme stress.

It will be another week before I see a hematologists

Any ideas or thoughts??????? I am really scared.

[PlanetaryKim]

Hi jhatx. I am not a doctor. But to me this doesn't look like CLL. The only thing that even remotely points that direction is your barely elevated lymphocytes (which is responsible for the barely elevated white count). All your other numbers are actually going the "wrong way" for it to be CLL. If by any chance it is a CLL, there are a variety of good treatments now, and more becoming available all the time. many/most of us with CLL are living a good and normal life - either with or without treatment.

But as I say, your bloodwork alone does not really shout out CLL to me. Have you been experiencing any of the classic "B" symptoms? Intermittent fever, drenching night sweats, swollen nodes, unintended weight loss exceeding 10% of body weight, unexplained fatigue?

[jhatx in reply to PlanetaryKim]

I am not having any of the B symptoms at all. I feel healthy. Workout 3-5 times a week, eat decent etc.

just super crazy anxiety waiting to meet with a doctor.

[jhatx in reply to PlanetaryKim]

What are the other numbers that are going in the opposite direction.

[PlanetaryKim in reply to jhatx]

Red blood cells, hemoglobin and absolute neutrophils would (eventually) be going low, not normal or high if CLL. Really, the only thing you've got here on this blood work is slight elevated lymphocytes. And that can be due to many different things. GPs generally don't know much about CLL. But I know it's always stressful when waiting for information to come in from doctor visits and test results. Hope you get some answers soon!

[JigFettler Volunteer]

You distress at your current situation is very understandable.

I agree with PlanetaryKim - one can't make a diagnosis of CLL on the basis of those blood results!

What is "therapeutic phlebotomy" by the way?

How much blood do you give in the "blood donations"? !

5 donations in 3 months for basic blood work won't affect any results. I have Haemochromotosis and gave 500mls every 2 weeks for 10 months with no effect on my numbers - over all! Only the iron level dropped.

Have you had any other blood results, B12, Folate, Ferritin, Thyroid and so on?

The uncertainty is awful. All of us on this Forum know how that feels.

Best wishes

Jig

[jhatx in reply to JigFettler]

That is just a blood donation by a prescription.

I have not had those other BW items. Will do this week. I’m sure with all the donations my iron / ferratin are messed up.

[MsLockYourPosts Passed Volunteer in reply to jhatx]

I’m confused about “a blood donation by prescription” - “therapeutic phlebotomy”. Was this because your iron level was high or did your doctor give you another explanation for taking blood? It doesn’t sound like you are talking about blood tests. This group is very international, so sometimes terms get confusing. We have joked, in the past, about words that are part of everyday use in one country, but offensive in another.

Try to not get ahead of yourself, and stay away from Google. There is an incredible amount of incorrect and old information there. If you want to read about CLL go to cllsociety.org and just read the section called The Basics. But, don’t use that to self diagnose! Your counts could indicate any number of things, some of them having to do with insignificant causes. Something, for example, as simple as being very hydrated for one set of labs and dehydrated for the next can affect your hemoglobin.

It’s good that your doctor is paying attention to your labs and that you will see a hematologist to rule any possible problems in or out. Try to not overreact while waiting for the appointment. I know. Easy for me to say. You can always come here with questions, or just to connect with someone who understands when you are feeling stressed. And, of course, let us know what the hematologist has to say.

[JigFettler Volunteer in reply to jhatx]

I would estimate it's very unlikely that "normal" bloods for regular testing, which will be no more than 20ml of blood total, will mess with results.

Living with the uncertainty is tough though. Focus on the moment you are in, emerse yourself in the "green" of nature if you are able to, always so therapeutic for me.

Jig

[Big_Dee]

Hello jhatx

M-m-m-m, testosterone therapy? When I was first diagnosed with CLL, I was also being tested for high testosterone which was double normal amount. There concern that the high testosterone may have contributed to my CLL. I did not ever take any testosterone supplements and testosterone did decline over time. It was thought that my high testosterone might be my night sweats, not so lucky. Testosterone is a hormone with some unverified cancer fighting properties. I am not a doctor, but I would not worry too much. Blessings.

[jhatx]

I had low testosterone so I started therapy for it about 5 years ago. I do testosterone injections. One of the side effects of it is polycythemia (increased HCT, RBC, and hemoglobin). That is why the doctor had me do the blood donations at 1 to 1.5 pints per donation. I think it was way to aggressive and has created more issues.

[4Glory]

This site is a great resource if firmly diagnosed with CLL or SLL (and CLL society too, as mentioned above). The doc would most likely send you to hematologist for testing (flow cytometry & FISH). It's good they're watching over you so closely. Best wishes for answers but also know sometimes it takes awhile!

[jhatx]

I was finally able to meet with the oncologist / hematologist and go over the flow cytometry results. He said my GP was way of base. I do have MBL and to keep an eye on it. My count was 1.2 so far below the 5 threshold to be CLL. I am cd38 and zap70 negative.