New (fatigued!) user looking for ideas :-)

[PEF]

Have you been checked for a parathyroid problem? Have you had your serum calcium checked? Your serum calcium MUST never be at 10 or over. It should be solidly in the 9's which may take several tests to determine. If your calcium is suspicious, high 9's, spiking into the 10's, you need to have a parathyroid hormone test (PTH). Unfortunately most doctors have no idea how to correctly read these tests so they most often miss the problem until the patient has such bad symptoms that they go to a Endocrinologist, who often miss the problem also. Here is the website that will tell you all about it. Don't settle for your doctor telling you that your calcium is not a problem. You need to see the number yourself.

http://www.parathyroid.com

I just read about a woman whose calcium is consistently over 10. Her PCP will not allow her to see an Endo. She feels horrible, is exhausted all the time, but her ass-hole PCP thinks she does NOT have hyperparathyroidism, which she surely does.

[49er]

Have you been checked for a parathyroid problem? Have you had your serum calcium checked? Your serum calcium MUST never be at 10 or over. It should be solidly in the 9's which may take several tests to determine. If your calcium is suspicious, high 9's, spiking into the 10's, you need to have a parathyroid hormone test (PTH). Unfortunately most doctors have no idea how to correctly read these tests so they most often miss the problem until the patient has such bad symptoms that they go to a Endocrinologist, who often miss the problem also. Here is the website that will tell you all about it. Don't settle for your doctor telling you that your calcium is not a problem. You need to see the number yourself.

http://www.parathyroid.com

I just read about a woman whose calcium is consistently over 10. Her PCP will not allow her to see an Endo. She feels horrible, is exhausted all the time, but her ass-hole PCP thinks she does NOT have hyperparathyroidism, which she surely does.

Unfortunately, in my lab report, the normal range provided is 8.7 to 10.3. I had read the same thing as you PEF but it sounds like it is going to be pretty hard getting doctors to take this issue seriously if this is what is being reported as normal.

[SleepyEyes21]

Thanks to all for your interest and help, massively appreciated. I’ll try and take the comments in turn…!

Julie – I actually sleep on my front, totally unable to sleep any other way!

Kaibyrd – Glad to hear you’ve got to the bottom of it! I was actually tested for Lyme disease, came back negative. Interesting you say that the blood tests aren’t 100% effective, will look into it. Didn’t have any of the other symptoms associated with Lyme disease though (no rashes, joint pain etc), but probably worth another look given I’m currently stuck for diagnosis!

SleepyEyes – Thanks for the detail! Seems that Mono has been ruled out. I recently went to see an experienced ME/Chronic Fatigue Syndrome specialist here in London. Obviously fascinated by my rare issue, but said I just didn’t fit the bill for ME as other than fatigue, I don’t have any of the other symptoms associated with it. He has referred me to his colleague (more on the physician side of things), so we’ll see where that goes. And yes, I’ve had pretty thorough physical exams, and a whole range of blood tests (liver, kidney, thyroid etc etc). All negative.

Mask – I don’t have the details with me, but it’s one that fits just under the nostrils, not the mouth/face. Fits well, I sleep ok with it, and the machine (Philips Respironics) doesn’t show any leaks occurring. I’ll keep using the machine, though I’ve again used it the last 5 weeks or so with no impact.

Catathrenia – very little research on it as it’s quite newly identified. But it’s effectively a holding of breath, accompanied with a low murmuring/groaning sound (it’s also called “sleep-groaning”) and a heavy exhalation at the end. Symptoms – in theory, nothing. The research that’s been done suggests there are no negative health/sleep issues with it, and that more than anything it’s just disruptive for your partner if it bothers them.

Hi Mark, thanks for the info on catathrenia; that's pretty much what I've found out also, altho I didn't know it's only been newly identified.

Are your consultants/ doctors all in one place of business? One of the best approaches for you could be if all of your doctors are consulting and communicating with each other, if they aren't already doing so. If your doctors won't communicate between themselves, I would recommend that you try to find either a medical place that specializes in breathing disorders or unidentified medical disorders; these types of places will have teams of medical professionals from many specialties (ie: sleep, respiratory, neurology, etc.) that will coordinate, communicate, and work together for your care. This is called a multi-disciplinary approach.

If you don't want to switch docs/ consultants right now, consider seeing a neurologist for a consult if you haven't already. If you have seen one and he/ she found nothing, I would recommend asking for a referral to a specialized clinic/ hospital for sleep disorders.

[PEF]

Hi 49er - Yes, the normal lab upper limit is set in most places as 10.2 to 10.5. However, this is misleading because the numbers vary by age group. For people up to 20 years of age, over 10 can be normal. However, in people who are solidly in adulthood, over 10 is never normal, especially if the PTH value is not very low. Often people with hyperparathyroidism have both serum calcium and PTH within the normal ranges, like I did. I probably had this for 12 years and suffered terribly, and got terrible osteoporosis because my calcium was being leached from my bones into my blood. No doctor thought I had it. I tumbled to it and read about it on parathyroid.com. The upshot was that I ignored my doctors and went to Tampa for surgery. I did in fact have a parathyroid adenoma.

[MasterMark]

First off - thanks to all of you for your time, interest and expertise! Hugely appreciated.

PEF - thanks for the info re parathyroid, not something I'd come across before, so definitely worth exploring. Just checked my last set of blood tests for Serum Calcium. Measured in mmol/L (as we do here in the UK, not mg/dL as for you in the US), the range is 2.10-2.55. I came in at 2.53. Will discuss this with the physician when I next see him. Thanks for bringing it up!

Sleepyeyes - There has indeed been some communication between the various consultants I've seen, which is good. The neurologist had actually been my first port of call, and it was he who suggested the sleep study and sent me to the sleep clinic. I'm going to download the latest CPAP data from my machine. If the information comes back pretty "clean", it will probably confirm the clinic's suspicion that I have some kind of medical issue which is NOT sleep-related. If I can't figure out what it IS, I guess I can keep eliminating what it is NOT!!

[MasterMark]

Hi 49er - Yes, the normal lab upper limit is set in most places as 10.2 to 10.5. However, this is misleading because the numbers vary by age group. For people up to 20 years of age, over 10 can be normal. However, in people who are solidly in adulthood, over 10 is never normal, especially if the PTH value is not very low. Often people with hyperparathyroidism have both serum calcium and PTH within the normal ranges, like I did. I probably had this for 12 years and suffered terribly, and got terrible osteoporosis because my calcium was being leached from my bones into my blood. No doctor thought I had it. I tumbled to it and read about it on parathyroid.com. The upshot was that I ignored my doctors and went to Tampa for surgery. I did in fact have a parathyroid adenoma.

Hi PEF. So, I looked at my most recent blood tests. My serum calcium came in at 2.53 mmol/L, which corresponds to 10.12 on your scale. However, corrected for my serum albumin, it falls to 9.24 which would seem to be "comfortable." That said, I did have low Vitamin D (55 nmol/L, where 25 - 75 is considered insufficient). Given that the test was done just after a 2 week holiday in the sun, I imagine my Vit D level was at an all-time high!

Either way, no harm in getting it checked out as you suggest, so I'll give it a go. Thanks again for the suggestion!