?

Log in

No account? Create an account

Sorting my shit out - Tactical Ninja

Jul. 26th, 2015

11:31 am - Sorting my shit out

Previous Entry Share Next Entry

So the results came back from the doctor. Note accompanying results from doctor:

"Everything normal, however depression can make eczema worse, I think you should come see me about that."

Problem is, I'm not depressed. And I don't think I have eczema either.


I first went to the doctor last year with a weird pain in my back. After doing some tests and discovering that my autoimmune response indicators were up, I was referred to a rheumatologist but couldn't get an appointment because I'm not sick enough*, and the doctor ended up telling me it's a mechanical problem and patting me on the head and sending me away.

A year of doing exercises to fix it and I still have the same pain in the same place. It's not mechanical. It might be OOS-related, but I'm not convinced because I've changed all the things that might cause that as well, for no improvement.

Meanwhile, my mental state has gone downhill, I've developed a weird rash (which the doctor says is eczema), I have been sick twice this year (I never get sick), and it's affecting my work and my study. Here's a list:

weird rash
back pain
depression, low motivation
waking early (3am-5am)
difficulty concentrating
loss of libido
dry skin
worsening PMS
short temper
beaded, ridged fingernails
low tolerance for cold
poor reaction to stress (crying jags, emotional instability)
craving for sweet and salty food
difficulty maintaining stable weight

So off I go back to the doctor. Bung all those symptoms into google and it comes back with hypothyroid every time. Doctor insists it isn't that, but that I must be depressed. I'm like "This doesn't feel like depression" so she sends off for a bunch more tests.

Fast forward to Friday, get the message from the doctor. Thing is, I can look at my own tests, and while she's right in that everything is normal (and the thyroid stuff really is normal), there are a couple of things that are only just:

cortisol level (8am) 291nmol/L (normal range 250-700)
potassium level 5.2 mmol/L (normal range 3.6-5.2)
There is also an elevated level of alkaline phosphatase (93 U/L when normal is 20-90), which the doctor has left a note saying 'minor change of no consequence')

So while these are within the normal range, they are close enough to the parameter that I think it's worth having a look at. I bunged them into google, as you do. Turns out the normal range for morning cortisol is variable, and taking an average of the 20 or so sites I read, google thinks that anything below 350-400 is worth further testing. And elevated potassium goes along with this, to supposedly indicate poor function of the adrenal glands, which can be caused by:

* pituitary gland problems
* prolonged stress
* autoimmune problems

I can tick two of those boxes, so I read further, and found that 'adrenal fatigue' is not a recognised medical problem, but that once it tips over into adrenal failure, it becomes life-threatening and then the medical community recognises it as Addison's disease. Anyway, I discovered a bunch of lists of symptoms associated with adrenal insufficiency, which while often quite broad and vague (aren't they all?), include every single one of the things I'm experiencing.

So I read further, and discovered that the adrenal glands sit on top of your kidneys, which is *exactly* where the pain in my back is located.

Now that's a bunch of coincidences and internet non-doctorial exploration, and I know that humans tend to find patterns where there aren't necessarily any, but to me that's worth considering further.

Especially when I found that in these illnesses, the adrenal glands lose their ability to respond to stress by producing enough of the right hormones to regulate the body, and so instead of rebalancing itself quickly, it takes ages to recover, and/or even minor stress can send you into a tailspin. So last Saturday I pranged my car, on Sunday I wanted to kill myself. On Thursday I had an argument with the insurance company about it, on Friday I didn't have enough energy to go to my pole class. Etc.

Thing is, I'm afraid to go back to the doctor, and go "I read the internet and I disagree with you and I want you to look further into this."

Oh yeah, when I was diagnosed with depression? It was after a prolonged period of stress and the psychiatrist that saw me said I had 'adrenal fatigue'. He prescribed fluoxetine, which apparently raises cortisol levels, so it worked.

If my doctor did that, I'd probably get better, and she'd go "See, I was right! You're depressed!"

I'm not fucking depressed, except by the fact that I've not felt 100% for such a long time.

So I read further. Turns out that there's a lot you can do for yourself by adopting a diet that helps the body to maintain stable levels of blood glucose (which is one of the functions of cortisol) throughout the day.

This diet is basically a modified form of paleo (but with dairy included) - lots of protein, complex carbs, and fat, no sugar or processed foods, loads of vegies, not so much fruit. Apparently the inability to deal with sugar is one of the things that goes with this type of problem.

The other thing is about *when* you eat. The idea being that small, regular meals, each containing some protein, fat, and complex carbs, will help the body not have to work so hard to maintain its balance of hormones. Things like not eating fruit in the morning because too much sugar after fasting is hard work for the adrenals, having a snack before bed to reduce the amount of time fasting, etc.


So I'm willing to give this a go and see if it helps. Meanwhile I've reduced the stress in my life by knocking the Honours on the head, and I'm going to try this for a month and see what happens. I feel better already, but I want a record of consistently feeling better before I'm convinced it's working and not just the novelty of my newfound freedom.

But there's still the pain in my back, and I'd like to get to the bottom of it, which means going to the doctor.

I think I need to find another doctor, tbh. This one seems determined to tell me I'm depressed without looking further into what might be causing it. Bollocks to that.

* For those who are thinking 'death panels!' think again. Our government would like to turn our health system into a US-like user pays model, and part of what that means is that state funding is not covering as much as it used to, and so the bar for who gets to see a specialist has been raised unless you have insurance and can afford to go private. Fuck that noise.

Comments:

[User Picture]
From:springheel_jack
Date:July 26th, 2015 12:01 am (UTC)
(Link)
did they do a tsh?
(Reply) (Thread)
[User Picture]
From:tatjna
Date:July 26th, 2015 12:07 am (UTC)
(Link)
Yes.
(Reply) (Parent) (Thread)
From:(Anonymous)
Date:July 26th, 2015 01:40 am (UTC)
(Link)
The thing that sceptical chronically well people don't understand about unusual illness is that not everything fits easily into medical boxes. That is why people end up doing crazier and crazier alternative things. Sometimes it even works. It takes a long time for scientific research to catch up and even longer for things to be implemented into mainstream practice. When things are complex, it is particularly hard to design research that can show clear and obvious treatment results. The diet you mention is pretty much what my body responds best to, but I have this secret love affair with toast a pies. I wonder if this guy can help, he has written a book RE adrenal fatigue: http://www.adrenalfatigue.co.nz/dr-james-wilson/

Isa
(Reply) (Parent) (Thread)
[User Picture]
From:tatjna
Date:July 26th, 2015 01:44 am (UTC)
(Link)
Yes, I ran across his name, and that site, a number of times during my research on this. It has a lot of interesting info, but unfortunately does that thing where it drip feeds you a bit of information, then goes "BUY THIS BOOK!" which for me is generally a cue to click away.

The theory is supported by a fair bit of surrounding information though, and there's a test that can be done to detect abnormal cortisol levels over and above the one I've already done. That's what I want to push my doctor for, because it would likely confirm or rule out adrenal problems.
(Reply) (Parent) (Thread)
From:(Anonymous)
Date:July 26th, 2015 12:25 am (UTC)
(Link)
I strongly recommend you go to
http://www.thyroidsupportnz.co.nz/contact.html#regional
and contact the Wellington email address. The person that will reach has a great deal of expertise about this kind of thing.
I'm sure she will say that the normal ranges aren't the be-all and end-all. What feels right for one person may feel terrible for another. She will probably tell you that there are more tests that may be needed for thyroid stuff, beyond the usual TSH, free T3 and free T4 which I believe you've had. She also knows a lot about the interactions between thyroid and auto-immune problems.
Best of luck
Mary
(Reply) (Thread)
[User Picture]
From:girlguitarist
Date:July 26th, 2015 01:31 am (UTC)
(Link)
I hope you get this figured out! It drives me crazy how ill you need to be for them to admit you have a real problem and not depression (it took my liver shutting down from Hep A for them to stop saying I was depressed). I wish Dr. Google could write prescriptions for you :)
(Reply) (Thread)
[User Picture]
From:pythia
Date:July 26th, 2015 07:05 am (UTC)
(Link)
Well, that all sounds like a bag of sweaty balls. I'm sorry you're having to put up with all this, and i really do know ow hard it is, but stick to your guns. In the end, it's YOUR body, and you're the only who can really know what it's like to exist as you, in that body. Thus, I think you're more qualified than a doctor to be diagnosing yourself, really. :P
(Reply) (Thread)
[User Picture]
From:jaelle_n_gilla
Date:July 26th, 2015 09:13 am (UTC)
(Link)
Oh bummer! I hate when they go "We tested you and medically you are fine!" while you are still going: "But I'm in paaaiiiiiin, dammit!"

I also do the internet search when I disagree with a doctor but as you know yourself - we can see patterns where sometimes there aren't any. I'd say, son#t be afraid to go to your doctor and tell them you want further tests until they found out what's wrong. I think that's a valid and reasonable demand.

I would not put too much weight onto individual test values that were within range. There is a reason these ranges are so wide. It's because people can have values even below and above the "normal ranges" and still be perfectly healthy (and remain so). Also, all kinds of factors can go into the variation. E.g. not drinking enough before the test would raise the Hct and sodium levels, simply because the blood gets thicker. You say you wake up at 3-5am, so if you didn't drink or eat before the blood test, that might account for that. Also, you said you craved salty food... So your intake was probably higher too.

The low cortisol is usually considered a good thing. Again, if your usual sleep cycle ends early, your level of 8am is worth the level of someone else's 11am cortisol, and 290 would be perfectly fine.

I know little about alkaline phosphatase, only that it's a liver value and is affected (like most liver values) by what you ate and drank in the last few days. But of course also by several possible problems and diseases.

The trouble with the internet is that discussion about potentially serious or deadly illnesses take up a big volume while harmless stuff doesn't get discussed much. From your symptoms it could just as well be some simple under-nourishment with vitamins or minerals. I know at least one case where iron tablets helped a variety of symptoms that were bothering a friend to the extend that she thought she was terminally ill.

You are probably giving me the eye by now, but my suggestion, if you want it, would be to try some broad range vitamin and mineral supplements and at the same time pester your doctor until they find out what's wrong or make it better some other, generic way.

I hope they find out what's wrong soon and I hope it's something simple, and treatable. Don't concern yourself overly much with all the horrors you find on the 'net! *hugs*
(Reply) (Thread)
[User Picture]
From:tatjna
Date:July 26th, 2015 09:28 am (UTC)
(Link)
Don't worry, I'm not easily scared into thinking I have Ebola. I've already considered most of what you've mentioned and decided that I will try altering what and how I eat. If I'm still getting symptoms after a month I'll revisit it with a different doctor.
(Reply) (Parent) (Thread)
[User Picture]
From:jaelle_n_gilla
Date:July 26th, 2015 09:49 am (UTC)
(Link)
Healthy eating is a good thing, no matter what you do or don't have. From my own experience, while I work I can never muster the discipline to eat healthy(er) so I usually start with vitamin supplements. Faster and easier (if not quite as good as eating right) *sigh*

Do you remember Arnold Schwarzenegger in Kindergarten Cop? There is this wonderful quote where he comes in after a tough night with a headache and one of the little treasures screams: "It's probably a tumor!" It has become our in-joke when one of us whines about some symptom or other ;-) Of course so far it never was, so the joke never took a wrong turn.
(Reply) (Parent) (Thread)
[User Picture]
From:richaarde
Date:July 26th, 2015 01:00 pm (UTC)
(Link)
Definitely find a different doctor. The one you have now is a moron.
(Reply) (Thread)
[User Picture]
From:meri_sielu
Date:July 26th, 2015 04:36 pm (UTC)
(Link)
A second opinion from a different doctor might not be a bad idea, it's your health at the end of the day and you know best. *hugs*
(Reply) (Thread)
[User Picture]
From:kehleyr
Date:July 27th, 2015 12:52 pm (UTC)
(Link)
Yes this is what I was thinking as well!
(Reply) (Parent) (Thread)
[User Picture]
From:wildilocks
Date:July 27th, 2015 01:43 pm (UTC)
(Link)
I know you do healthy fit acro stuff, but have you considered something more meditative and stretchy/relaxed rather than engaged? yes, I do mean yoga, especially restorative / yin. I think could really help a lot (along with diet which sounds like a good bet). always better with less simple carbs, which we have too much easy access to in the modern world.
(Reply) (Thread)
[User Picture]
From:belenen
Date:August 4th, 2015 05:34 am (UTC)
(Link)
wow, WOW, reading this I am overwhelmed by the similarities to something my partner is facing. This is a public post but I wanna double-check -- is it okay if I share it with them?
(Reply) (Thread)
[User Picture]
From:tatjna
Date:August 4th, 2015 05:35 am (UTC)
(Link)
Fine by me. :)
(Reply) (Parent) (Thread)