Is edema/water renetion part of symptom list for AI?

[Chanasky]

I'm just asking because I'm dealing with chronic generalized edema condition (undiagnosed) and am trying to make sure my docs haven't overlooked anything

[Chanasky]

That's alright. I forget stuff myself sometimes. I was pretty certain that low TSH is hyper, especially when combined with a high T4. I know that sometimes during treatment for hypo, the patient might get prescribed too high dose medication and wind up with a low TSH as a result but that doesn't mean that they weren't hypo from the start. It's just a side effect of too much meds

[rumpled]

I get it confused but this is from a website. Now I am lost lol... Brain fart sorry.

"A high TSH result may mean that:

The person tested has an underactive thyroid gland that is not responding adequately"

"A low TSH result may indicate:

An overactive thyroid gland (hyperthyroidism)
Excessive amounts of thyroid hormone medication in those who are being treated for an underactive (or removed) thyroid gland"

[Chanasky]

Hmm, interesting. Thanks for the detailed reply. I think I actually had a dynamic MRI of pituitary. I know that the MRI was of the pituitary gland itself in addition to the regular MRI. I'm not sure it was an actual "dynamic" MRI, though. I don't recall that term being used but maybe I just forgot.

Lower TSH is hypo?? According to who? I've always been told that I am slightly hyper.

Too much conflicting info with all this medical stuff, imo.  

[rumpled]

I know MANY people who had "clean" "normal" MRIs at one or two times and later found they did have tumors, either with that MRI or a properly done one. I had a tumor show up after 12 years that I had symptoms for, but never saw until I had a dynamic pituitary MRI. So it is common for error, sadly.

If you had an MRI without contrast... you really missed out. These lesions are so tiny as it is. I would not go for another scan though until you get a good doc to order the scan - aka a dynamic pituitary scan.

The tests are not unreliable per se, it is just that the body changes all the time. Cortisol normally goes up and down, prolactin can go up and down with illness. So you should have several sets of testing to really get a good view of how you are. It does take time...

I had pitting edema with high cortisol, I get a bit of edema now when I don't manage my salt now.

Low end TSH is actually... hypo! TSH is opposite of normal. I have central hypothyroidism and my TSH is .0006, .0004 or something like that, depending on the date.

[Chanasky]

I'm actually very slightly hyperthyroid (low end TSH and higher end T3) so hypothyroid issues are definitely ruled out in my case, if that's what you were suspecting. I've always tended toward hyper, ever since I was a kid, but I've never been out of range to any significant degree

[Chanasky]

I'm sorry. I'm not understanding the first part of your comment. A clear MRI is fairly common in regards to what?

One of the biggest problems I've had with docs is that they are never definitive about anything and when I ask around I get far too many contradictory opinions about things.

The MRI, for example, was supposed to rule out a tumor. But when I saw another endo, he recommended I get another one with contrast dye and a closeup images of pituitary gland itself, because he didn't trust the previous scan and wanted to read it himself.

At what point do you just trust the test results, move on and take the hypothetical disease off the table of possibilities?. I mean, in theory, I guess I could have a pituitary tumor that went undetected twice. I could also wind up going for a half dozen MRIs and still not know for sure whether I have a tumor or not in the end b/c of the theoretical possibility that it was missed yet again. If the tests are this unreliable then the docs should at least tell us about it.

I'm a person who prefers facts to theories and speculation but that's all the docs seem to do at this point and I''m already two years into this nightmare

The generalized pitting edema seems to be a major issue for me but the docs sort of blow that off and look into all these other peripheral issues like the GI stuff and hormones. Personally, I believe that they'll continue chasing their tails if they don't include the massive edema in the dx. If the disease in question doesn't include pitting edema then I suspect I don't have it.

I don't know. It's all very confusing to me

Thanks for the input, though. I really appreciate it. I don't really communicate with anyone about all this stuff and it's nice to talk with others who have been through a similar situation

[Endra]

Don't forget that if your cortisol is low you won't metabolize thyroid well.   Water retention can be thyroid as well.   Just a thought.

Are your cortisol levels normal?  Have they done a stim test?

[rumpled]

A clear MRI is fairly common.  Elevated cortisol can lower testosterone.

It is hard when you are out if the box, that is why pit patients typically take years and years (a decade or more) to get diagnosed, and why we can do so poorly after care as we got treated so late.

You still have to keep dogging it to rule out other causes, but I would see if you can find a surgeon to read the film, or next time get a dynamic pituitary MRI so your film may show the lesion if it exists.

From what I know, Cleveland is a conservative clinic.

[Chanasky]

The docs initially suspected that I might have a pituitary tumor due to very low testosterone (both free and total levels which seem to be due to pituitary hypofunction per my blood work) and all my together symptoms but after two MRIs, they tell me I'm clear on that front. My main issues are generalized edema, low T, major inflammation in my GI tract and generally feeling very unwell for a very long time now. They keep telling me to go the Cleveland Clinic. It seems that once they rule out obvious, common causes (heart failure, liver, kidney, etc), they basically give up and you're on your own. It's very disheartening

[rumpled]

Then perhaps you can experiment a bit and try to add more sodium and fluids and see if the edema goes down.

It may be a renin/aldosterone issue with the low bp?

[Chanasky]

I don't have a diagnosed disease, though, and that's the problems. I've been walking around with this edema for awhile but no answers from docs. I've been tested extensively for heart, liver and kidney issues but nothing turned up. I was curious if other diseases, like an adrenal issue, could be causing the chronic water retention. The edema is generalized everywhere, not just legs or feet. I can even feel it in my neck and arms when I turn my head or bend my arms

[rumpled]

Your body is fighting to hold on to liquid so it holds. So when you are puffy (unless you have just had a bunch) you can also be dehydrated. I know when my body wonky, I need more salt and fluids. Try it and see it if works.

If ankles only are swollen though I would see doc, may be heart or kidneys.

[Chanasky]

Yeah, but why would that be the case? It seems a bit odd that I should have all these issues balancing fluids.

[rumpled]

I would add more salt. I know it sounds weird but it sounds like you need more salt and fluids then.

[Chanasky]

K is on the low side of normal and NA is right in the middle

[rumpled]

Are your K and NA at opposite ends of ranges? The doc may not pick up on the issue if you are in range, but opposite.

If they both sit middle then odds are against the renin/aldosterone issue.

[Chanasky]

Thanks for reply. Potassium and sodium are normal but I haven't had aldosterone/renin checked. My bp is quite low, though, and always has been

[rumpled]

I had that with elevated cortisol but now low.

How is your sodium and potassium ? It may be a renin/aldosterone issue?