Have you ever researched dysautonomia? There is forum on here and there is info on ndrf's (National Dysautonomia Research Foundation) web site (it's an org). Did they also test your plasma free metaneprhines & catecholamines? These can be an issue with a rare tumor on an adrenal gland called a pheochromocytoma... however, usually you would have episodes of high BP with that. But, if you had dysautonomia, the catecholamines and plasma free metanephrines can often have out of range numbers.
Did they do a separate MRI of pituitary (different from general MRI scan)? If you have a large enough adenoma, it can cause headache... but they might want to do a complete endocrine testing if they haven't already to see if anything comes back out of the ordinary before ordering it.
Have you looked into fibromyalgia, one of the spectrum of dysautonomia disorders?
hi thanks you for your reply.
I hadnt ever heard of that untill you just said it then. I looked it up online and ALOT of the sumptoms im feeling come up under that list!
Also im sorry to sound supid but i dont even know what my 'plasma free metanephrines' are so im pretty sure theyve never tested anything like that!
and no i dont think they did a mri of mituitary..just a general one. They only really did that because they could see how distressed i was becoming by it all and realised if they didnt do something id just get worse.
Is this a common thing and how would i go about mentioning this to my doctor? what are the tests for a diagnosis?
Your reply has been brilliant, its nice to know theres still people out there who want to help!
I'm not sure which thing you are talking about that you looked up. Dysautonomia affects a lot of people and there are different ways it affects them.
Pheochromocytoma is rare, usually benign, but can be deadly if it goes undiagnosed. Plasma free metanephrines is one of the most sensitive tests to screen for this tumor of an adrenal gland. It also can show if you have a hyperadrenergic state (which may be being caused by dysautonomia). If I recall correctly from my reading in the past, it tests the inactive metabolites of your catecholamines- epinephrine (adrenaline) and norepinephrine (noradrenaline).
You may want to get your catecholamines (active epineprhine and norepinephrine) tested as well. I have dysautonomia in the form of postural orthostatic tachycardia syndrome (P.O.T.S.), and nearly always one of these levels is outside the normal range when I am tested. I am still waiting to see if they will rule out the diagnosis of pheochromoctyoma with me. But likely, I just have the hyperadrergic form of P.O.T.S..
If you want to get tested for fibromyalgia, you probably would get the best help from a rheumatologist knowledgable about it. They test "trigger points" to see if you have it.
If they test all the hormones produced by your pituitary and any of them comes outside the normal range, they may be willing to do an MRI scan. There are however, non-functioning adenomas of the pituitary as well that don't emit hormones.
Regarding your thyroid- did they test just TSH, or did they test T3, T4, and calcitonin as well?
Thanks for your kind remarks!
hi thanks for replying again, i looked up Dysautonomia (Which i'd never heard of before) so im sure the doctors have never even considered this. It lists so many of the symptoms i am feeling, But when i was looking up i found that It said quite alot it could be diagnosed through an echocardiogram in some cases..which i had and the cardiologist said was normal. But maybe if i do have this its just not that particular type.
How was you diagnosed with this?
Im going to print of as much infromation as possible and take it into my doctors along with some of your messages which have been so helpful! you certainly seem to know what your talking about.
As for my thyroid test i think it was just the most basic testing TSH. And would a tumour on the glands not show up on a general MRI then?
Thanks so much for helping me with this.
I was diagnosed with Postural Orthostatic Tachycardia Test by means of a "tilt table" test. It was performed by an electrophysiologist. When they gave me nitroglycerine and tilted me up a second time, it was too much for my body and I passed out.
If you haven't already, check the ndrf website (its an org). They have helpful information and a section where articles are posted. There is a whole spectrum of disorders that fall into the "dysautonomia" family. Potsplace is another website (this one's a com) you might check out. P.O.T.S. is only one form of dysautonomia. Hypovolomia can be a problem with some people with dysautonomia.
The pituitary gland takes a special MRI separate from a general brain MRI.
Another thing someone told me to get checked (I'm a migraine sufferer), but I think would show on a general brain MRI is Chiarri malformation.
If they are willing to do another blood test for the thyroid, I recommend try especially to get T3 checked.
Don't forget catecholamines and definitely plasma free metanephrines regarding your heart rate! I wish you well and keep me posted, please!