Polycythemia, Oh Bugger

Well after waiting for an hour and a half I saw another doctor today who said that as my JAK-2 tests hadn’t come back yet there was no point in doing any investigations.

He also scrapped off the spinal tap because he said it’s not needed in this case (just leaving me with the possibility of the bone marrow test if the blood results come through negative).

So I was sent home again.

This guy at least wasn’t a cover all bases for the hell of it type.

Just a shame they couldn’t have phoned me to let me know it wasn’t worth going in. Now roll on the 19th Dec when I go back to clinic - hopefully the results should be back then.

Hopefully you be able to call before your next appointment so you will not have to make an unnecessary trip.

I’m glad that spinal bit is out of there because it just didn’t seem necessary. Lets hope they they find what they are looking for in your blood test so you can avoid any more tests for now.
:slight_smile:

I don’t know enough about your condition to contribute anything useful, other than it seems like your level of fitness is letting you get away with a lot more physiological stress than the average person. Good on ya for that.

I myself was diagnosed with a chronic auto-immune condition in August 2006 and it has not gone into remission. I lost my job this past March and had to withdraw from the university for the Spring 2007 semester. Sucks, because it is such a stress on my relationship and on my family, not to mention I cannot work yet until I get better and I’ve lost almost 40 pounds since being diagnosed.

Best of luck to you, man. Remember, to be strong minded means to walk away from any situation and feel like you gained something. I hope there’s some light for you at the end of the tunnel.

[quote]Renton wrote:
DrSkeptix wrote:
Wait. Stop.

Anabolic steroids alone are a cause for polycythemia. Even aromatase inhibitors alone can elevate testosterone sufficiently (in men only) to cause secondary polycythemia. Also, if I understand correctly, and you have diabetes, there is a tricky little piece of kidney physiology that can cause false elevations of the red count.

If you do not have other findings of primary polycythemia–a big spleen, high neutrophils or high platelets–ask your doctor if you can stop your AAS for one month and re-check.

JAK-2 is often not elevated and I have not found it generally useful; I have no clue why a spinal tap is indicated (which I have had twice). You do not want an unnecessary bone marrow biopsy. It hurts, it costs, and if I am correct, it coould lead to misdiagnoses.

SO…ask your doctor if you should just stop AAS and AIs and re-check; after all, what is the hurry? And tell him that you heard it on the internet.

Phew - thanks for the post! The spinal tap is a cover all bases thing as they are checking me for cancer too (well that’s the impression I got - there was a lot of information in a short time).

My last cycle finished over 3 months ago - could this still be an effect from that? My Doc is fully aware of my use of AAS and the types/dosages I was on.

Maybe the kidney physiology you mention has something to do with it. I’ve shown increased protein levels since I was diagnosed diabetic and although in all other respects my kidney tests show no problems the protein issue persists.

I’ll discuss all your points with my doc though next week.

Many thanks.

[edit] I actually have a low platelet count. Should have made it clearer in my original post about my AAS usage.[/quote]

I’m chiming in a bit late here to say sorry to hear of those polycythemia and diabetes diagnoses, but it sounds like you’ve got a handle on things both mentally and physically.

I definitely think AAS use would have skewed the readings, since it causes erythropoiesis, increasing red blood cell production. Anabolic steroid use is known to cause Secondary polycythemia, but it should be a temporary condition which will eventually subside upon cessation of AAS. I do not believe your diagnosis should be pinned down to a genetic disorder (Primary polycythemia, I take it).

There is also Relative polycythemia which is apparent rise of the erythrocyte level in the blood; however, the underlying cause is reduced blood plasma. This is often caused by fluid loss eg. burns, dehydration and stress.

You aren’t showing the symptoms such as headaches, weakness, dizziness (vertigo), and/or a ringing noise in the ear (tinnitus), or itching (pruritis), especially after a hot bath, so it looks like your body is making use of the extra red blood cells right now and not finding them to be a problem…

I haven’t found anything that says polycythemia is associated with low platelet count; in fact it should be the opposite and cause higher platelet readings, should it not? I believe the platelets to be the irritating factor causing the above symptoms in this disease, and not the red blod cells, since they are associated with clotting. In my opinion.

If you have a low platelet count, in fact that should decrease the chances of troublesome clots forming.

I don’t know - your initial doctor’s diagnosis does not sound consistent to me and he seems to have ignored the fact that you used AAS which would have shown an increased red blood cell count in any case. I strongly think there is a good chance you are being misdiagnosed - however, with these things if they really DO appear, it’s best to detect and treat them early.

Anyway, don’t take this as an internet diagnosis as I am not an MD; but those are just my thoughts on the matter.

Hey Ren,

Just checking in to see how the procedure went today. I would ask if we are having a boy, but no one would get that little joke.

Hope it went well. Update us as soon as you can.

B-3

Hey Ren,
Geezes man you got some great advice and info on here! Screw webMD you have T-Nation! Anyway man I wish you the best and hope everything turns out alright!! Hopefully without too many painful tests!

[quote]BodyBldgBabe wrote:
Hey Ren,

Just checking in to see how the procedure went today. I would ask if we are having a boy, but no one would get that little joke.

Hope it went well. Update us as soon as you can.

B-3[/quote]

It’s twins! lol

Well - I got in there this morning for the ultrasound check. Just two nurses there to start off. I was aked to take off my shirt and lie down. The two girls in there did a double take when I got shirtless!

Honest truth, within 2 minutes of getting half naked there were half a dozen of them in the room pretending (badly and blatently) to ask a question or get a box of gloves or whatever. Made me laugh and real good for the ego.

Anyhow the scan went well but it’s inconclusive. My spleen is large as is my liver but I was told that because of my height & size this could just be normal for me. They’ve sent the data off to my consultant for a better look.

So that was about it other than she found a lump on my liver - she said a name (maybe began with an F or Ph?) but I can’t remember it. She said it’s nothing to worry about but they may have me back in a few months to check it again.

So, roll on next Wednesday (19th) now so I can get my blood results and probably proded and poked again!

[quote]CrewPierce wrote:
Hey Ren,
Geezes man you got some great advice and info on here! Screw webMD you have T-Nation! Anyway man I wish you the best and hope everything turns out alright!! Hopefully without too many painful tests![/quote]

Damn straight mate. Why would anyone go anywhere else for advice? You get serious replies, piss takes, and pictures of hot girls wearing very little. What could be better?

Glad to hear your ego enjoyed itself :wink:
It is odd to me that your spleen is as large as your liver. It should be about the size of your fist. Having your spleen that large would indicate to me that there is an increased destruction of RBCs.

This would make since with the polycythemia diagnoses plus the fact that you have not suffered any symptoms. The enlarged spleen would also explain your low platlet count as a certain amount of platlets are stored there generally.

Try not to get hit in the stomach. Having your spleen that large might cause some problems in that case.

There are a handful of of possible diagnosis that would lead splenomegaly, a few of which involve the liver.

I wish I could get a sample of your blood and take a look at it, lol.
Thanks for keeping us updated :slight_smile:
Good luck!

[quote]JohnnyBlaze wrote:
Renton wrote:
DrSkeptix wrote:
Wait. Stop.

I haven’t found anything that says polycythemia is associated with low platelet count; in fact it should be the opposite and cause higher platelet readings, should it not? I believe the platelets to be the irritating factor causing the above symptoms in this disease, and not the red blod cells, since they are associated with clotting. In my opinion.

If you have a low platelet count, in fact that should decrease the chances of troublesome clots forming.

Anyway, don’t take this as an internet diagnosis as I am not an MD; but those are just my thoughts on the matter.[/quote]

Helpful factoids:

  1. Rheology. When the hematocrit (percentage of packed red cells) rises above 55%, microvascular bloodflow decreases. Consequently oxygen delivery to tissues actually falls, despite the higher concentrations of oxygen-carrying hemoglobin.

  2. Other things equal, the chance of pathologic clotting rises directly with higher hematocrit.

  3. In primary polycythemia, the clotting disorder is directly related to the hematocrit; the higher platelet level is an independent risk factor for clots, but is not entirely responsible for pathologic clots.

We are still on stop…and waiting

Best wishes