New here, could really use some help!

[PowellSixO]

So I finally got my blood work back from a couple weeks ago. It’s all over the place. I had slowly started reducing my testosterone dose for about a week before this blood draw. I don’t know how my free t went so high!? Any way, I feel like shit today. Hoping for good sleep tonight, and a better day tomorrow.

 

[PowellSixO]

How did my estrogen and testosterone levels go up on a lower dose? It doesn’t make sense. My CBC w/ diff came back verifying that I do have low wbc. I went to an oncologist and hematologist yesterday and they took like 11 viles of blood. I have no idea what they’re testing exactly. But hopefully I’ll get some answers. I’m desperate for some relief.

 

[sammmy]

Neutrophil count is low, most probably they are testing for infection.

 

[Blackhawk]

So I finally got my blood work back from a couple weeks ago. It’s all over the place. I had slowly started reducing my testosterone dose for about a week before this blood draw. I don’t know how my free t went so high!? Any way, I feel like shit today. Hoping for good sleep tonight, and a better day tomorrow. View attachment 15823View attachment 15825View attachment 15824

Google neutropenia pronto.

Your neutrophils are Grade 3 neutropenia. At 0.5 you will be grade 4 at extreme risk for infections of all kinds.

I was severely neutropenic from leukemia last year. Due to neutropenia, I had numerous life threatening infections including sinus ,cellulitis, fungal pneumonia, and pleural effusions requiring thoracentesis. These required multiple hospitalizations for a total of around three weeks as inpatient.

Cancer and cancer treatments can cause neutropenia, along with a number of other drugs. You need your cause determined and treatment if necessary. I currently have to inject GCSF (granulocyte colony stimulating factor) about every 2 weeks. The cancer drug I am on causes neutropenia.

Do not screw around with this. You need to be seen pronto. And if you develop any infection or a fever go to the ER and announce your neutrophils are that low. Febrile neutropenia can kill you quickly. They are "first line" cells that defend against infection. They are a critically important part of your immune system and response.

 

[PowellSixO]

Google neutropenia pronto.

Your neutrophils are Grade 3 neutropenia. At 0.5 you will be grade 4 at extreme risk for infections of all kinds.

I was severely neutropenic from leukemia last year and had numerous life threatening infections including fungal pneumonia requiring multiple hospitalizations.

Cancer and cancer treatments can cause neutropenia, along with a number of other drugs. You need your cause determined and treatment if necessary. I currently have to inject GCSF (granulocyte colony stimulating factor) about every 2 weeks. The cancer drug I am on causes neutropenia.

Do not screw around with this. You need to be seen pronto. And if you develop any infection or a fever go to the ER and announce your neutrophils are that low. Febrile neutropenia can kill you quickly. They are "first line" cells that defend against infection. They are a critically important part of your immune system and response.

I appreciate your input. I really hope they find something out. I’ve been suffering with something unknown for a while now, and feel like shit most days anymore. If I get a fever or something, I’ll be sure to go right to the ER. It doesn’t help that I’m in the middle of a move from Arizona to Oklahoma right now. Not to mention switching jobs and insurance. It’s been pretty stressful. I’ll probably be starting over on my search for an answer once I settle in, in Oklahoma. I hope I at least get answer here, before I leave next week.

 

[sammmy]

Cancer and cancer treatments can cause neutropenia, along with a number of other drugs. You need your cause determined and treatment if necessary. I currently have to inject GCSF (granulocyte colony stimulating factor) about every 2 weeks. The cancer drug I am on causes neutropenia.

To Blackhawk only: you might want to research the herb Astragalus and discuss it with your doctor as a supportive therapy after the cancer treatment. I got interested in it because I saw randomly two reviews on Amazon that it "increased their neutrophils" and my neutrophils are at the lower end of normal, leading to daily sinus pressures / headaches. There is a human study in vivo with what appears a high dose Astragalus that indeed found increase in most kinds of WBC but they assume it is due to mobilization of the immune system into the blood circulation, not production of new blood cells:


Characterization of the Physiological Response following In Vivo Administration of Astragalus membranaceus

Given the rapid peak in circulating WBC populations we
suspect that AM stimulates a mobilization of the immune
cells into circulation from peripheral tissues/organs rather
than hematopoietic formation of new cells from the bone
marrow. It is possible that AM acts to stimulate immune cell
mobilization leading to broad, systemic scanning of potential
antigens as if “positioning” the immune cells for activity. It is
then reasonable to infer that following mobilization, with no
antigen present to continue activation of the immune cascade,
the response is subsequently diminished and circulating cell
populations are normalized by 24 hours after treatment. Surprisingly,
administration of AM did not increase circulating
levels of NK-cells.

 

[Blackhawk]

To Blackhawk only: you might want to research the herb Astragalus and discuss it with your doctor as a supportive therapy after the cancer treatment. I got interested in it because I saw randomly two reviews on Amazon that it "increased their neutrophils" and my neutrophils are at the lower end of normal, leading to daily sinus pressures / headaches. There is a human study in vivo with what appears a high dose Astragalus that indeed found increase in most kinds of WBC but they assume it is due to mobilization of the immune system into the blood circulation, not production of new blood cells:


Characterization of the Physiological Response following In Vivo Administration of Astragalus membranaceus

Thanks for that, while I appreciate the optimism, "After the cancer treatment" is probably a pipe dream. There is one possibility down the road (CAR-T) which I may have to resort to, I would go for it sooner than later if I could, but there are too many hurdles for now including bankrupting us.

What I have is not like solid tumor cancer nor a plethora of other blood cancers that can be effectively killed or eradicated from the body. It is a chronic and incurable cancer. I may reach some level of remission when I can pause the anti cancer drugs, but from there anything that stimulates the immune system has the potential to increase my cancer cell proliferation again. My cancer cells are B-cells. and they ARE part of the immune system! Stimulate the immune system to produce white cells, you are also stimulating the cancer.

I read the discussion in that article and followed up with a more general search on things which I know to be problems with a host of herbs, roots, mushrooms, anti oxidants and other supplements etc. There are numerous questionable aspects of Astralagus with my cancer and its potential drug interactions. In the article, the effects associated with B-cells are not strongly conclusive, and mentioned only as an aside to the other immune effects. That it affects IL-6 alone and that is not well defined related to B-cells is enough to make me avoid it altogether.

 

[sammmy]

I hope you get in remission.

Astragalus as a part of Traditional Chinese Medicine has shaky medical studies. The best overview I could find is at the Sloan Kettering Cancer Center: Astragalus Review

One of the references [47] mentions using Astragalus for acute myeloid leukemia.

 

[sammmy]

PowellSixO, you have to find the cause of your severely low neutrophils. Please do not postpone it and do not start herbal or supplement "treatments". It can be extremely dangerous.

 

[PowellSixO]

PowellSixO, you have to find the cause of your severely low neutrophils. Please do not postpone it and do not start herbal or supplement "treatments". It can be extremely dangerous.

I understand that it’s very important. I’m trying my best, but the doctors are super slow it seems. Hopefully I’ll find something out soon. It’s nerve racking knowing how awful I feel, and how serious this may be. Yet I can’t seem to get anywhere with the doctors.

On top of it all I’m in the middle of moving and buying a house. Some days I don’t feel like I’ll be around for much longer.

 

[PowellSixO]

PowellSixO, you have to find the cause of your severely low neutrophils. Please do not postpone it and do not start herbal or supplement "treatments". It can be extremely dangerous.

Any chance this could have been caused by trt? Any chance it will improve now that I’m off?

 

[sammmy]

It is unlikely to be related to TRT. Your initial post in this thread had low neutrophils but not that low. You should look at the values during your TRT and discuss that with your doctors. Getting "diagnosed" on an internet forum is not a good idea. That's what doctors are for. They must be available to ask them questions.

 

[PowellSixO]

It is unlikely to be related to TRT. Your initial post in this thread had low neutrophils but not that low. You should look at the values during your TRT and discuss that with your doctors. Getting "diagnosed" on an internet forum is not a good idea. That's what doctors are for. They must be available to ask them questions.

Yes I agree that a forum is not a good place to get a diagnosis. The hematologist I spoke with said that polycythemia is something she’s seen in multiple trt patients. It matches some of my symptoms, and would explain my low neutrophil and wbc levels. It’s all speculation until the results come in. My mind is just all over the place with possibilities right now. I know I shouldn’t do that, but it’s difficult not to. I’ll be sure to update once I hear something.

 

[PowellSixO]

Well I’ll keep up my log of quitting trt cold turkey. I’m feeling really well the last couple of days honestly. Lower anxiety than I can remember for a while now. I don’t seem to over heat as easily. My sleep has improved ten fold! I’m still taking 6.25 mg of ambien to fall asleep, but I fall asleep fast, and sleep solid without waking up. I’ve been getting 7.5-8 hours of sleep the last 3 nights. Libido is low, or at least I don’t think about sex that often. It has not seemed to effect my ability to get and maintain wood. Ejaculation is more gratifying now though, which is a plus. I’ve bottomed out on weight loss. Holding 200 lbs now. My thoughts are getting much more clear. I am a bit on the emotional side. I’m guessing from higher e levels. I have not heard anything from the doctor yet. The negative things I would say are low energy, and strength doesn’t seem as good. Brain fog does kick my ass sometimes. But overall I would say I’m improving. I feel like I’m headed in a positive direction at least.

 

[sammmy]

Well day one in the books. I was surprised to already notice a difference. Not sure if it’s in my head, but I definitely felt a lot of brain fog today. Hard to concentrate, and my eyes felt weird. I felt uncomfortable focusing on things with my eyes for a long time. Almost felt like I was on the verge of a headache all day, that never came.

Do you still get the weird eye feeling that you reported it first on July 17? Your second blood test was done also on July 17 and reflects your state on that day. Your current state seems better.

 

[PowellSixO]

Do you still get the weird eye feeling that you reported it first on July 17? Your second blood test was done also on July 17 and reflects your state on that day. Your current state seems better.

My eyes are much improved. I did notice I had a moment this morning that images fluttered if I starred. But it only lasted for 20 seconds maybe. Other than that I’ve been good the rest of the day. I have noticed that my eyes are not as sensitive to light now. There’s actually been a great improvement in light sensitivity.

 

[sammmy]

Your doctors have to be informed of the eye symptoms - dizziness/nausea when trying to focus, eye sensitivity, sinus pressures and headaches can be all signs of an infection, frequently a viral one by Herpes family viruses (CMV, HSV1, HSV2, Varicella, etc) and yes most people already have a few of those.

Your doctors have to do CBC again to see where your neutrophils stand and if they are still low to give you some prophylactic antiviral while trying to figure out the neutrophils.

 

[PowellSixO]

Your doctors have to be informed of the eye symptoms - dizziness/nausea when trying to focus, eye sensitivity, sinus pressures and headaches can be all signs of an infection, frequently a viral one by Herpes family viruses (CMV, HSV1, HSV2, Varicella, etc) and yes most people already have a few of those.

Your doctors have to do CBC again to see where your neutrophils stand and if they are still low to give you some prophylactic antiviral while trying to figure out the neutrophils.

I have let them know all of my symptoms. I will suggest this to my doctor. I’m really hoping that we finally get somewhere with my recent blood work.

 

[PowellSixO]

So week 3 was definitely the worst!! All of my symptoms seemed to be magnified. Then like magic I woke up this last Friday and went 3 days with almost zero symptoms at all. No anxiety, no light sensitivity, no mood swings, great sleep with no ambien, and had energy enough that I went running and swimming. It was sooooo weird to feel like a normal human being again. Today was super stressful with moving and vehicle problems, but I still stayed feeling great. I had a brief moment of anxiety creep up, but it went away almost immediately. Tomorrow I’ll post more about my latest blood draw, and what my dr said.

 

[PowellSixO]

So my doctor said that everything looked very good on my last blood draw. My wbc and neutrofils were back up into normal ranges, and that my wb cells looked perfect. Bone marrow appeared to be healthy. Liver looked healthy. Everything looked really good. The only number she was concerned about was my hematocrit level. It was within the normal range, but at the very high end of normal. Her opinion was that I’m just having hormonal induced anxiety and panic attacks. She said it’s not completely uncommon for some men, to just not be able to tolerate trt. Sleep problems, blood pressure issues, high hematocrit, anxiety, and other issues. She recommended I stay off for a while (6-12 months), and see if I continue to improve. Then at that time re evaluate if trt is for me.