Who Has Seen An Endocrinologist? Was It Helpful?

[westernmass]

Since I've been taking Anatomy & Physiology as prerequisites for my grad program, I've recently learned about how intertwined the endocrine and nervous systems are. Epinephrine, NE, aldosterone, ADH, etc. etc....there seems to be so much overlap and all related to dysautonomia. It makes me wonder if I'm missing out on something. Has anyone seen an endo and had success? What issues seem to be common with POTS/dys? What sorts of tests or treatments are available? Has it been helpful (or a waste of time?)?

Just curious I think it's important to approach our issues from as holistic a viewpoint as possible since it's all connected. Would love to hear experiences and opinions!

[Guest Hanice]

I went last month and my tests came back NORMAL to my disappointment. I did a 24hr urine catch for catecholamines, creatine, cortisal, tsh, and I don't remember the others. I think it's a good option. Just make sure you are symptomatic that day, (but safely) I actually had a very good relaxing day that day that made me think that my results were probably a false negative. I didn't have one panicked attack or episode (which never really normally happens) I'm always cringing in fear of what I'm going to feel next and that day I was just feeling great! Arrgh!

They wanted to do the test via blood sample but I refused because:

1. That vein was still messed up from that week because I had gone to the hospital and they drew my blood.

2. Because I have low blood volume and that dangerous. IMO (that's what I told her and she got all mad and threatened, like I was telling the master how to do her job bla bla bla)

and 3. I KNEW about the test beforehand, I knew that the URINE results yeild more accurate results (which I also told her and she got even more angry at me)

The doctor ended up telling me that thats not the way they do things and I just felt like being my regular-old feisty-self, but decided I should just tough it and let it go. But I would have told her something along the lines of "be more humble mam, just because you dont know about something I do, doesn't make me think less of you, you should embrace it and take the opportunity to learn about it instead and you shouldnt think that every patient is going to require the same care, we are not robots and we all require different care"

Well that was my case. I do think that it's a great test just remember to NOT be calm the day you do the test! Gl!

[Chaos]

I think it depends on the endo, but by and large, I don't know that many on here have had much success with them. You would THINK that they should be interested because of how much overlap there is between the systems, but for the most part, I think most endos these days are so overwhelmed with diabetic patients and other "known" diseases that they are like most docs we find....not interested in us.

I have an endo I see who actually knew about POTS before I saw him, but he doesn't really do anything for me related to POTS. He follows me for my reactive hypoglycemia and what appears-to-be-developing-hashimotos but until I go into full blown diabetes or thyroid disease, I think he's just marking time.

[Guest Alex]

Westernmass,

I have and he has been helpful in ruling out a bunch of other conditions that may mimic POTS (he has checked my thyroid, my pancreas, my pituitary, and my adrenals...can't remember if there was anything else). I had a bunch of blood work, urine tests, an abdo/pelvic CT scan, a pituitary MRI but everything came back OK. I might go back though to see one given that lately my prolactin levels are quite elevated (3.5 times the normal!) and none of the drs I'm seeing now has been able to figure out a cause for that.

Hanice,

as far as the blood draw - if they wanted to check your catecholamines via blood work, that is a test that offers different and more accurate info than the 24 h urinary fractionated metanephrines. The blood work is more sensitive, while the urine test is more specific (not more accurate). The urine test is actually used first in low suspicion pheochromocytoma cases, to avoid the trauma and the costs associated with the blood work, or sometimes it's used to confirm the results of the blood work (depends on the doctor though).

A standing catecholamines blood test, aside from being used as part of the evaluation for a pheochromocytoma, can help a dr tell if you have hyper POTS. There is a very strict protocol for this blood test though and it has to be followed or the results might be skewed. Being upset or stressed during the test is a big no no and may lead to misdiagnosing! To the best of my knowledge, there is no other test that can be substituted for this as the very diagnosing criteria for hyper POTS is based on this test.

Also, for what it's worth, blood work for someone with low blood volume is OK as long as they don't draw a lot of vials. I had as many as 20 vials drawn in one session and I was fine, but we're all different and I'm not trying to generalize

Alex

Edited July 31, 2013 by alex74alex

[Guest Hanice]

Alex

From what I understand is that the urine test is the most accurate because the blood test is only done at one time, the measurements change through out the day, the urine catch is what they refer to after the blood test, for more accurate results.

I don't mean to provoke panicked in yourself on the day of the tests. For me to feel normal lately is impossible but it just so happened that on my exam day I was in a spa-like trance. That would definitely not wield accurate results if that's not my normal way of being.

I didn't want to draw blood unless it was essential. She ended up asking the other doctor and he said they didn't need it. More blood for me!

[looneymom]

I think it might be worth the effort to go see this type of doctor. My son was having sleep issues and I was wondering about his cortisol levels. His cortisol levels are fine but other things showed up. I'm in the process of trying to figure out what other abnormal test mean. My son was able to see an endocrinologist/immunologist doctor. This is a really good combination if you can find one.

[sue1234]

I've been seeing an endo way before my POTS began. I have a history of hypoglycemia and thyroid issues. The thyroid is under control, the hypoglycemia continues to be out of control on a day to day basis.

I feel a good endo work-up is essential to any POTS patient. One needs to know if their thyroid is working properly. From what my doctor told me, hypothyroid can cause an altered ADH, which would affect water balance. My ADH was low twice, but I didn't like the way I felt taking the meds for it.

It seems there is a group of us that fight low blood sugar. Not sure what's up with that, but an endo would follow that.

My adrenals have been tested thoroughly for both Addison's(which would cause lightheadedness) and Cushing's(which could cause other things I experience). I tend to have high-normal cortisol, but nothing concrete. I had a pituitary MRI that a neurosurgeon found two questionable "spots" on, but he said if I ever had abnormal labs, they should be more fully investigated.

So, an endo can be helpful. I feel I am like quite a few here, where labs are almost abnormal, but not quite.

I forgot to add: I have also been tested multiple times for a pheochromocytoma of the pancreas due to the flushes and altering blood pressure. All the testing came back normal.

[Hope]

Yes, I've seen one. I think Endo's can be very helpful to people who have conditions that they are testing for. For me they came up with nothing. They took a lot of blood, and I had already been drained of quite a bit at that time. My next ER visit is when they did the 24 hour urine, still nothing. I think it just depends on what you have. I believe my POTS is more autoimmune stemming from CFS and several viruses that I live with so the Endo was just a dead end for me. With that said, don't let them think your crazy if they don't find anything there! Like many doctors, this one was quick to point to "needing a phyciatrist" because she couldn't find what was wrong. How egocentric for them to think that if they can't figure it out that it's in your head.

[kayjay]

Alex

From what I understand is that the urine test is the most accurate because the blood test is only done at one time, the measurements change through out the day, the urine catch is what they refer to after the blood test, for more accurate results.

I don't mean to provoke panicked in yourself on the day of the tests. For me to feel normal lately is impossible but it just so happened that on my exam day I was in a spa-like trance. That would definitely not wield accurate results if that's not my normal way of being.

I didn't want to draw blood unless it was essential. She ended up asking the other doctor and he said they didn't need it. More blood for me!

Actually the reverse is true. I have false positive pheo tests with a 24 hour urine... every time.

The plasma test is more specific and accurate. It should be NOT be a single blood draw. A doctor who knows what they are going will take a baseline after you are set sing in a dark quiet room. Then you are permitted to walk around or sit up for about 10min. The second draw is compared to the first.

Thankfully it's a small amount of blood

[Freaked]

I went to an endo and thus far waste of time. Had already had urine catecholamines which were normal (on a very asymptomatic day with a lot of xanax). He seemed to think I had some sort of blood sugar issue (I have severe eating-related symps) but didn't seem concerned. He said I had a goitre and ordered a blood test for TPO antibodies, but then I got a letter saying the lab hadn't checked for them at all and to get the test done myself. So.

But I do think POTS may be a very endocrine issue, relating to renin, aldosterone, ADH and maybe adrenaline (hard to know if adrenaline issues are a cause or effect or both). I know this is a theory many specialists have regarding our low blood volumes, but I'm not sure what if any research has been done. The fact that fludrocortisone helps many potsies provides some evidence. If they could figure out where the broken link in that chain was and supplement it directly, it might be almost a cure.

[Guest Alex]

I think we're talking about different tests then, because as Kayjay said above, the blood work is more specific and accurate if done properly, and fortunately it's just 2 vials of blood

The nurse has to poke you in advance and leave the IV in as even the trauma of the needle poke can influence the results of the test. Then there is one vial of blood drawn after spending 30 min in a dark, quiet, temperature controlled room where you have to be as calm and relaxed as possible, you are to refrain from talking, watching TV, etc and another one taken after 10 min of being upright and walking around.

The test is used for evaluating a pheo as well as for determining your type of POTS. While for pheos there are other tests, there is no other test for hyper POTS - at least not that I know of and for some people knowing the type of POTS they are dealing with may make a difference in the way they manage their symptoms.

Also, not only being as relaxed as possible during the blood test helps, but also there are certain foods and meds that should be avoided for both the blood work and the 24 urine catch as again even the meds and the foods can influence the test results - the labs where I had these tests done provided me with very detailed info about my diet and med regimen for the few days preceding the test as well as the day of the test.

Alex