Polycythemia, Oh Bugger

Just a bit of a rant here about - well me.

So, having been diagnosed diabetic in Feb this year I’ve been having lots of blood tests. These have showed increased haemoglobin levels which haven’t dropped over the last 9 months so I was referred to a consultant.

More tests ensued and the guy dealing with me reckons I have Polycythemia - a genetic disorder which makes my bone marrow produce too many red cells. A LOT too many.

On whatever scale he used I scored 20 where I should be around 6. Apparently at this level I should be getting blinding headaches but they assume because I’m fit I’ve been spared these. Effectively my blood is far too thick.

So, next week I’ve got to go for a spinal tap and bone marrow biopsy (nice - not) and they’ve taken even more blood for a JAK2 genetic test which isn’t 100% accurate but may help with further diagnosis.

Good job they found it as without treatment it will just get worse (quickly) and then I’ll suffer a massive thrombosis or heart attack and will have to carry on posting on T-Nation in the next life.

So, no more AAS as it increases red cells too, regular phlebotomies (taking out up to a pint of blood each time) and possibly injections of interferon every day.

Bugger. As if I haven’t had enough shit to deal with over the last year or so. Ah well - I can handle it.

The one good thing is that it’s been found and the doc said that I should keep lifting heavy and eating well as it’ll all help.

So, wish me luck for next Tuesday! I’m not looking forward to the procedures after the descriptions I was given. Anyone else been through a spinal tap or bone marrow extraction? Would like to know what they’re like from first hand experience…

Hang in there mate :slight_smile:

Hey Ren, you already know you are in my prayers and I have the nurses outfit already picked out for you!

Seriously though…we are all here to cheer you on! We’ve got your back!

Nurse B-3

[quote]Renton wrote:
Just a bit of a rant here about - well me.

So, having been diagnosed diabetic in Feb this year I’ve been having lots of blood tests. These have showed increased haemoglobin levels which haven’t dropped over the last 9 months so I was referred to a consultant.

More tests ensued and the guy dealing with me reckons I have Polycythemia - a genetic disorder which makes my bone marrow produce too many red cells. A LOT too many.

On whatever scale he used I scored 20 where I should be around 6. Apparently at this level I should be getting blinding headaches but they assume because I’m fit I’ve been spared these. Effectively my blood is far too thick.

So next week I’ve got to go for a spinal tap and bone marrow biopsy (nice - not) and they’ve taken even more blood for a JAK2 genetic test which isn’t 100% accurate but may help with further diagnosis.

Good job they found it as without treatment it will just get worse (quickly) and then I’ll suffer a massive thrombosis or heart attack and will have to carry on posting on T-Nation in the next life.

So, no more AAS as it increases red cells too, regular phlebotomies (taking out up to a pint of blood each time) and possibly injections of interferon every day.

Bugger. As if I haven’t had enough shit to deal with over the last year or so. Ah well - I can handle it.

The one good thing is that it’s been found and the doc said that I should keep lifting heavy and eating well as it’ll all help.

So, wish me luck for next Tuesday! I’m not looking forward to the procedures after the descriptions I was given. Anyone else been through a spinal tap or bone marrow extraction? Would like to know what they’re like from first hand experience.[/quote]

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.

I have never had a bone marrow biopsy or a spinal tap, though I have seen the procedure done. I’m not really sure what to tell you about it that you probably haven’t had described to you. Those procedures are not fun and I’m sorry you have to go through them.

I really don’t understand why they are doing the spinal tap to help diagnose this, unless they are really just making sure they are covering all their bases.

Luckaly polycythemia is treatable and once the origin of it is known you will be able to get it under better control. I wish you all the best in the up coming weeks.

What type of diabetes were you diagnosed with? You seem too young and fit to get type 2. I myself have type 1, but I was young when I was diagnosed.
Good luck!

DrSkeptix had some interesting info. I can’t contribute much here, but I am interested if what he says has any connection with your situation.

Since you have higher hemoglobin levels, have you experienced an increase in aerobic endurance? I’d imagine it’s sort of like a natural EPO, in a not so healthy way.

[quote]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.
[/quote]

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]rondastarr wrote:
I have never had a bone marrow biopsy or a spinal tap, though I have seen the procedure done. I’m not really sure what to tell you about it that you probably haven’t had described to you. Those procedures are not fun and I’m sorry you have to go through them.

I really don’t understand why they are doing the spinal tap to help diagnose this, unless they are really just making sure they are covering all their bases.

Luckaly polycythemia is treatable and once the origin of it is known you will be able to get it under better control. I wish you all the best in the up coming weeks.

What type of diabetes were you diagnosed with? You seem too young and fit to get type 2. I myself have type 1, but I was young when I was diagnosed.
Good luck![/quote]

Thanks for the luck! I’m not actually too worried about this any more as I know it can be controled but it was a bit of a shock nontheless!

I’m slow onset type 1 diabetic (LADA). I have GAD65 antibodies which attack beta cells (Gotta love the NHS - It’s an expensive test by all accounts but my doc just signed me up without even breaking a sweat) - I currently respond fairly well to type 2 medication but this will slowly shift as my insulin production decreases.

[quote]Schwarzenegger wrote:
DrSkeptix had some interesting info. I can’t contribute much here, but I am interested if what he says has any connection with your situation.

Since you have higher hemoglobin levels, have you experienced an increase in aerobic endurance? I’d imagine it’s sort of like a natural EPO, in a not so healthy way.[/quote]

Yes - aerobic endurance seems to be increased. When I’ve climbed at high altitude in the past and aclimatised, then come back down to sea level, it’s sort of like that. There’s a constant mild headache at the moment which I didn’t experience when coming off a climb but I don’t know if this is to do with the thicker blood or just a low grade illness that’s going round (loads of people round here are suffering with stuff like that at the moment).

[quote]BodyBldgBabe wrote:
Hey Ren, you already know you are in my prayers and I have the nurses outfit already picked out for you!

Seriously though…we are all here to cheer you on! We’ve got your back!

Nurse B-3[/quote]

:-))))))))))))))))

[quote]Renton wrote:
Schwarzenegger wrote:
DrSkeptix had some interesting info. I can’t contribute much here, but I am interested if what he says has any connection with your situation.

Since you have higher hemoglobin levels, have you experienced an increase in aerobic endurance? I’d imagine it’s sort of like a natural EPO, in a not so healthy way.

Yes - aerobic endurance seems to be increased. When I’ve climbed at high altitude in the past and aclimatised, then come back down to sea level, it’s sort of like that. There’s a constant mild headache at the moment which I didn’t experience when coming off a climb but I don’t know if this is to do with the thicker blood or just a low grade illness that’s going round (loads of people round here are suffering with stuff like that at the moment).[/quote]

Uh oh!

Headache can be part of PCV if the Hct is more than 55 to 60. But then, definitely do NOT do an spinal tap unless there is a goddamn good reason to do so! Second, if you have secondary PCV and a headache, a CT or MRI is indicated before any consideration of spinal tap ( I will explain later, if needed.)

If AAS and AIs were stopped 3 months ago, is something else afoot? Smoking? Residing at altitude (unlikely causation even at the top of Ben Nevis)

Proteinuria in diabetes is important…and a private affair. Scare your doctor by asking him about hyporeninemic hypoaldosteronism and its effects on total body water. (Just kidding)

Time for numbers…pm me if you like, but trust no medical advice given by internet. Especially mine.

[quote]DrSkeptix wrote:
Renton wrote:
Schwarzenegger wrote:
DrSkeptix had some interesting info. I can’t contribute much here, but I am interested if what he says has any connection with your situation.

Since you have higher hemoglobin levels, have you experienced an increase in aerobic endurance? I’d imagine it’s sort of like a natural EPO, in a not so healthy way.

Yes - aerobic endurance seems to be increased. When I’ve climbed at high altitude in the past and aclimatised, then come back down to sea level, it’s sort of like that. There’s a constant mild headache at the moment which I didn’t experience when coming off a climb but I don’t know if this is to do with the thicker blood or just a low grade illness that’s going round (loads of people round here are suffering with stuff like that at the moment).

Uh oh!

Headache can be part of PCV if the Hct is more than 55 to 60. But then, definitely do NOT do an spinal tap unless there is a goddamn good reason to do so! Second, if you have secondary PCV and a headache, a CT or MRI is indicated before any consideration of spinal tap ( I will explain later, if needed.)

If AAS and AIs were stopped 3 months ago, is something else afoot? Smoking? Residing at altitude (unlikely causation even at the top of Ben Nevis)

Proteinuria in diabetes is important…and a private affair. Scare your doctor by asking him about hyporeninemic hypoaldosteronism and its effects on total body water. (Just kidding)

Time for numbers…pm me if you like, but trust no medical advice given by internet. Especially mine.[/quote]

DrS - many thanks for the response. The only numbers I have are what I’ve remembered and they may be off but I’ll get more solid info next week.

No smoking, (other than a joint once in a while) and I live 12 meters above sea level so altitude is not going to be an issue. I don’t drink excessively either - but recently I’ve dropped this down further to not drinking at all.

Will get some propper readings and pm them to you.

I know what you mean about not trusting internet advice, but I do like to be able to ask a few extra questions when I’m with my doc.

Thanks again.

Damn Renton, I hope everything turns out good for you big guy. Can’t have you gettin all sick on me and not have someone to go on a rant with. If I actually prayed,you’d be in them, but I don’t, so I wish you good luck with everything!
Keep on Keepin’ on.

[quote]BodyBldgBabe wrote:
Hey Ren, you already know you are in my prayers and I have the nurses outfit already picked out for you!..

Nurse B-3[/quote]

Just to cheer this forum up, we are going to need visual evidence of this B-3.

[quote]football061 wrote:
BodyBldgBabe wrote:
Hey Ren, you already know you are in my prayers and I have the nurses outfit already picked out for you!..

Nurse B-3

Just to cheer this forum up, we are going to need visual evidence of this B-3. [/quote]

Due to all the new HIPAA regulations regarding patient/nurse confidentiality, you’ll have to go directly to the patient and sign a release form! lol

[quote]football061 wrote:
BodyBldgBabe wrote:
Hey Ren, you already know you are in my prayers and I have the nurses outfit already picked out for you!..

Nurse B-3

Just to cheer this forum up, we are going to need visual evidence of this B-3. [/quote]

S’ok mate - I’ll set up a live video feed.

Thx to all for the well wishes.

[quote]Renton wrote:
football061 wrote:
BodyBldgBabe wrote:
Hey Ren, you already know you are in my prayers and I have the nurses outfit already picked out for you!..

Nurse B-3

Just to cheer this forum up, we are going to need visual evidence of this B-3.

S’ok mate - I’ll set up a live video feed.

Thx to all for the well wishes.[/quote]

Anytime bro.

Keep us posted. God Bless.

Hey Ren…
Best of luck tomorrow big guy! You’ll be in our thoughts & prayers. Defenitely let us know your okay.

B-3
@};-