Thalassemia or Cushing's disease?

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Offline Bigg

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Thalassemia or Cushing's disease?
« on: December 12, 2008, 04:55:55 PM »
Hi there,

What I found out today has completely messed in my head.  :banghead

But let's start from the beginning. I have more and more proofs that I may have Cushing's disease. The cause of the disease is high cortisol. I had cortisol tested in my 24h urine collection and it was 2,4 times higher than normal range. However the endo I went to said that I can't have Cushing's, because I don't have stretch marks and cortisol has to be 4 times higher than normal range.
As I found out this is not necessary to have stretch marks in Cushing's. Then I found out that high cortisol makes you prone to infections and especially shingles outbreaks (which I have all the time now).

This is the leaflet for hydrocortisone, which is the same as cortisol (Hydrocortisone is the pharmaceutical term for cortisol used for oral administration, http://en.wikipedia.org/wiki/Hydrocortisone)

http://www.answers.com/topic/ciprofloxacin-hydrocortisone

and it warns against taking hydrocortisone if you have:
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infection (like chickenpox, herpes, tuberculosis, or shingles)

Maybe this is not the best description, but anyway recurrent shingles (and other infections) may be explained by high cortisol - Cushing's disease.

Except this, I have many other high-cortisol-related issues - glaucoma, fat belly...

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Ok, that was sound explanation for shingles and this doesn't mean that I can't have thalassemia AND Cushing's, right?

But then I found this:
"Polycythemia as the first manifestation of Cushing's disease"
http://cat.inist.fr/?aModele=afficheN&cpsidt=18286286

This would sugggest that high cortisol might affect blood parameters in a way similar to thalassemia... Actually, to resemble thalassemia, cortisol levels should be not that high...

I do not know the exact mechanism of cortisol action on blood and hemoglobin, and that is my question: what does it do to the blood?

I can't find the answer myself.
I may only speculate that it may be one of the following:
a) Action on erythrocyte membrane to make the erythrocyte break down more easily (this one is most likely).
b) Action on the bone marrow so that it makes more erythrocytes (they are mature at a younger age), and more hemoglobin
c) Action on hemoglobin gene to produce more hemoglobin of one kind and thus it looks even more realistically like thalassemia (least likely)

And to make Cushing's even more probable, my parents do not have any signs of thalassemia in their blood. I have elevated levels of hemoglobin F and A2, but can it be that it is not due to thalassemia, but hypercortisolemia?

And even if I have thalassemia, my hemoglobin level is quite high for a thal - 15,2 was the highest I had (normal 14-18). Never had any problems with anemia...

Well, that's something to think about... I'll keep you posted, how the situation develops, and what the cortisol levels are really like...

Regards,
B.

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Offline Manal

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Re: Thalassemia or Cushing's disease?
« Reply #1 on: December 13, 2008, 04:39:13 AM »
Bigg that is very confusing but actually i will start searching too as i had no idea about this. I will let you know what i find. Did the doctors suggest any tests to do to confirm any of these disorders????

manal

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Offline Bigg

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Re: Thalassemia or Cushing's disease?
« Reply #2 on: December 13, 2008, 11:20:27 AM »
Bigg that is very confusing but actually i will start searching too as i had no idea about this.
Well, it is confusing...
My hemoglobin F and A2 are elevated:

Hemoglobin A2:  5.15 % (normal range: 1.9-3.5%)
Hemoglobin F: 1.3 % (normal range: below 1%)

So this could be possible only if cortisol somehow promotes production of A2 hemoglobin. Hemoglobin F would be be probably elevated in any disease with erythrocyte breakdown.
I just wonder if this is possible at all. But then again my parents do not have any symptoms, and as Andy said some time ago, my hemoglobin is high for a thal and he can't reach that level, even though he's not a thal...
And my hematologist and I, we came to conclusion that there must be something that keeps running blood production at high rates, but we didn't know what it is, until now...
So, everything fits...

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Did the doctors suggest any tests to do to confirm any of these disorders????
One way to check it, would be genetic test for thalassemia, but even for people who have it for sure, the results may be inconclusive - they may have a new mutation, not included in analysis. This would require a complete sequencing of my genes and I really doubt this would be done in my case.

The other way to check it, would be finding if I really have Cushing's disease... This is however difficult too, because many endo doctors can recognize this disease only if you have very well defined symptoms and you have all of them. In my case, I have all except stretch marks... And I don't know what endo should I go, because they do not advertise (like: "Yes, here you can get diagnosed for Cushing's"). So it's kind of a lottery, like always. I repeat this for a long time: every doctor should describe her/his area of interest. that would make things so much easier...
So for now I am doing different tests on my own (and paying for them, unfortunetely I have to wait for the results) and trying to find some conclusive evidence. That is also why I started this thread...

B.

 

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