Jezza
Well-known member
Hi there,
I've been away from this forum some time since I was hoping to get some results to share before posting again. I have some interesting lab results now, however no clear cut diagnosis yet much less a solution to the sweating. Still, it would be great if more people with HH have done this test/will do these tests to see how they compare, since there were definitely some irregularities.
First of all, to paint a picture, I just turned 23 and have generalised HH. Also, I'm pretty much convinced it's due to an endocrine disorder of some sort, be it primary or secondary. Could be nerve damage too, but in that case I would think it wouldn't follow patterns at all and on top of that, there would be now way to solve that in our livetimes, but I digress, let's stick to endocrine disorder.
Aside from the HH (for completeness sake) I have some problems like headaches, joint pains (knees/back) and also irritable skin/eyes plus some problems with my ears. However, a medic could say these are all genetically caused problems and obviously I don't know whether or not that's true or not. Fact is, if I wouldn't have HH I probably wouldn't seek medical attention or maybe just if it would remain the same over time for these problems. Otherwise I'm 1.90/80Kg, so nothing unhealthy about that.
I would say my HH started out with mild occasional palmoplantar HH when I was 12/13, but that was nothing like it is now. From when I was about 15/16 y/o (which for me was even before I really started growing/hitting puberty) it got rapidly worse and spread to the rest of my body. Nowadays, sometimes in cases where there's no stress at all, I'm completely normal, no noticeable sweating. However, if there's only the slightest reason to stress of any kind (be it social, danger, excitement, exercise, waking up etc) it's like a switch goes on and boom, sweating like an idiot, sometimes just bad, sometimes like 'I didn't even know I had this much fluid in me', in which case it is usually coupled with some other symptoms (pounding heart, fast heartrate, nervousness, heatsensation etc). In the latter case the sweatdrops poor down my back, croutch, knees, even my belly and of course hands feet and axillae. Strangely my head oftentimes remains relatively dry, however there is some flushing involved and the occasional drips on my upper lip.
That's the situation...Now the findings.
First of all, a blood test for TSH/T4 (thyroid) came back 7.2/20.7...The normal range for TSH is till about 3 and for T4 12-24. This means that the level of thyroid stimulating hormone is elevated beyond the normal value eventhough the thyroid hormone itself is relatively high. Although the latter is technically within normal range you'd expect it to be much less given the amount of TSH, since it's a feedback mechanism.
Meanwhile, a urinary catecholamine test (screen for pheochromocytoma) was normal, the levels were even lower than average. This was a little disappointing for me since all my symptoms fitted in very nicely with pheochromocytoma (I know that sounds iffy and weird, but it's true).
However, a blood test was done for hyperglycemia, and it came back at 18...after which the doc (endocrinologist) told me I was a diabetic, which would normally be the logical explanation with that value. I didn't really see myself being a diabetic but I was happy to believe it if it was the cause of the sweating, plus it can also be a sign of pheochromocytoma or elevated cortisol, but then, the test to confirm it (which is a test for average blood sugar over a longer period) was negative...
Then, after a low-dose dexamethasone suppression test (screening for cortisol levels), the blood value was at 92. There is some debate about normal values but the hospital used below 50 as normal, and the fact is that 98% of people have a below 50 value after this test (it can be false positive in case of heavy depression, but I wouldn't say I have that although obviously without HH things could be much better). So it is once again weird. But again, urinary cortisol levels (average 48h) showed no marked elevation, eventhough they were on the high side of what is considered normal.
I still have to do some further test, with 3 to 4 week intervals it doesn't go as fast as one would like, so I don't know yet what comes from all of this neither if it will help treating my HH in the end but at least I now have some confirmation that certain hormone values in my blood related to seating aren't normal...Which increases my believe even further that something is off.
Either way I would encourage all of you to press on your medics to do some of these tests because unfortunately in the medical world HH patients are still oftentimes collateral damage. In fact, a dermatologist I encountered twice told me that normally no test are done at all on people who come in with HH as primary complaint since they'd only find some kind of cause in 10% of the cases. Meaning to his opinion, 10% of people with HH unknowingly walk around with an undiagnosed underlying condition because the medical world chooses so. Collateral damage indeed...
Personally, I think it is possible/plausable that there might be an intermittent elevation (possibly under the influence of normal stress) of sweat inducing hormones due to some endocrine disorder. Hence the 'normal' average values and elevated incidental values. You might say that in that case symptoms would be more clear, but mind you that people with for instance pheochromocytoma or even pituitary adenoma often are treated by medics for years before someone finds out the underlying cause.
For pheochromocytoma for instance, the average time till diagnosis is about 7 years, while looking at the symptoms you would say you would notice in about a 2 days. It's really not that clear cut and actually rather complicated, but my reasoning is --> sweating is regulated by the endocrine system, so if the sweating isn't correct, the endocrine system is corrupted somewhere which might be identifiable and therefore treatable.
I would go as far as saying that people with HH are made to believe it's idiopathic. People established some 100 years ago that things don't just exist out of nothing. And also, I don't believe HH is genetic because I'm basically living proof of that (I know, sample size etc...). I do believe however that an endocrine disorder causing HH can be partly genetic and cause HH in more than 1 family member, but that is something else as saying HH is genetic. So, in other words, once again, don't just believe medics when they say HH is just inherently part of you, but push for testing. It's the only way we'll ever progress with finding a solution for this mess.
I've been away from this forum some time since I was hoping to get some results to share before posting again. I have some interesting lab results now, however no clear cut diagnosis yet much less a solution to the sweating. Still, it would be great if more people with HH have done this test/will do these tests to see how they compare, since there were definitely some irregularities.
First of all, to paint a picture, I just turned 23 and have generalised HH. Also, I'm pretty much convinced it's due to an endocrine disorder of some sort, be it primary or secondary. Could be nerve damage too, but in that case I would think it wouldn't follow patterns at all and on top of that, there would be now way to solve that in our livetimes, but I digress, let's stick to endocrine disorder.
Aside from the HH (for completeness sake) I have some problems like headaches, joint pains (knees/back) and also irritable skin/eyes plus some problems with my ears. However, a medic could say these are all genetically caused problems and obviously I don't know whether or not that's true or not. Fact is, if I wouldn't have HH I probably wouldn't seek medical attention or maybe just if it would remain the same over time for these problems. Otherwise I'm 1.90/80Kg, so nothing unhealthy about that.
I would say my HH started out with mild occasional palmoplantar HH when I was 12/13, but that was nothing like it is now. From when I was about 15/16 y/o (which for me was even before I really started growing/hitting puberty) it got rapidly worse and spread to the rest of my body. Nowadays, sometimes in cases where there's no stress at all, I'm completely normal, no noticeable sweating. However, if there's only the slightest reason to stress of any kind (be it social, danger, excitement, exercise, waking up etc) it's like a switch goes on and boom, sweating like an idiot, sometimes just bad, sometimes like 'I didn't even know I had this much fluid in me', in which case it is usually coupled with some other symptoms (pounding heart, fast heartrate, nervousness, heatsensation etc). In the latter case the sweatdrops poor down my back, croutch, knees, even my belly and of course hands feet and axillae. Strangely my head oftentimes remains relatively dry, however there is some flushing involved and the occasional drips on my upper lip.
That's the situation...Now the findings.
First of all, a blood test for TSH/T4 (thyroid) came back 7.2/20.7...The normal range for TSH is till about 3 and for T4 12-24. This means that the level of thyroid stimulating hormone is elevated beyond the normal value eventhough the thyroid hormone itself is relatively high. Although the latter is technically within normal range you'd expect it to be much less given the amount of TSH, since it's a feedback mechanism.
Meanwhile, a urinary catecholamine test (screen for pheochromocytoma) was normal, the levels were even lower than average. This was a little disappointing for me since all my symptoms fitted in very nicely with pheochromocytoma (I know that sounds iffy and weird, but it's true).
However, a blood test was done for hyperglycemia, and it came back at 18...after which the doc (endocrinologist) told me I was a diabetic, which would normally be the logical explanation with that value. I didn't really see myself being a diabetic but I was happy to believe it if it was the cause of the sweating, plus it can also be a sign of pheochromocytoma or elevated cortisol, but then, the test to confirm it (which is a test for average blood sugar over a longer period) was negative...
Then, after a low-dose dexamethasone suppression test (screening for cortisol levels), the blood value was at 92. There is some debate about normal values but the hospital used below 50 as normal, and the fact is that 98% of people have a below 50 value after this test (it can be false positive in case of heavy depression, but I wouldn't say I have that although obviously without HH things could be much better). So it is once again weird. But again, urinary cortisol levels (average 48h) showed no marked elevation, eventhough they were on the high side of what is considered normal.
I still have to do some further test, with 3 to 4 week intervals it doesn't go as fast as one would like, so I don't know yet what comes from all of this neither if it will help treating my HH in the end but at least I now have some confirmation that certain hormone values in my blood related to seating aren't normal...Which increases my believe even further that something is off.
Either way I would encourage all of you to press on your medics to do some of these tests because unfortunately in the medical world HH patients are still oftentimes collateral damage. In fact, a dermatologist I encountered twice told me that normally no test are done at all on people who come in with HH as primary complaint since they'd only find some kind of cause in 10% of the cases. Meaning to his opinion, 10% of people with HH unknowingly walk around with an undiagnosed underlying condition because the medical world chooses so. Collateral damage indeed...
Personally, I think it is possible/plausable that there might be an intermittent elevation (possibly under the influence of normal stress) of sweat inducing hormones due to some endocrine disorder. Hence the 'normal' average values and elevated incidental values. You might say that in that case symptoms would be more clear, but mind you that people with for instance pheochromocytoma or even pituitary adenoma often are treated by medics for years before someone finds out the underlying cause.
For pheochromocytoma for instance, the average time till diagnosis is about 7 years, while looking at the symptoms you would say you would notice in about a 2 days. It's really not that clear cut and actually rather complicated, but my reasoning is --> sweating is regulated by the endocrine system, so if the sweating isn't correct, the endocrine system is corrupted somewhere which might be identifiable and therefore treatable.
I would go as far as saying that people with HH are made to believe it's idiopathic. People established some 100 years ago that things don't just exist out of nothing. And also, I don't believe HH is genetic because I'm basically living proof of that (I know, sample size etc...). I do believe however that an endocrine disorder causing HH can be partly genetic and cause HH in more than 1 family member, but that is something else as saying HH is genetic. So, in other words, once again, don't just believe medics when they say HH is just inherently part of you, but push for testing. It's the only way we'll ever progress with finding a solution for this mess.