Starting over to get a diagnosis

[Wanderland]

Hi! I'm new to this (but slightly not) and I just need help with having a better way to advocate with my doctors.

History: 7 years ago I started retaining water/gaining weight, but I also didn't know that I had a heart arrhythmia at the time. Saw two cardiologists and did a stress test (and blacked out) and a tilt table test (and blacked out), but my heart rate didn't do what the doctors considered "classic POTS tachycardia" so I was diagnosed with orthostatic intolerance and that I probably got overheated due to my anhidrosis. I was put on a medication to manage my water retention.

Flash forward to now, my weight is so hard to keep consistent. I still have water retention issues. But this year, I've been tired....like I could fall asleep at work if I let myself, tired. 

Symptoms: lethargic, light sleeper, never feel rested after sleep, exercise intolerance (even though I've worked out 4 times a week in a studio since 2018) because my heart rate spikes to around 140 and then it'll drop below 60, struggling with maintaining my weight, water retention, brain fog, difficulties with memory recall, difficulty learning new information, poor balance, difficulty regulating and adjusting to temperature changes. My face shape/jawline can get more round and puffy but it could be water retention?

.....oh, and sometime this year I developed a hump on the back of my neck.

My blood work is "normal", but probably not optimal. Endocrinologist: I have 2 nodules on my thyroid, but those are benign, so no thyroid medication because my TSH, T3, and T4 are "normal". Allergist: I have a mild dust allergy, but nothing else.  Dermatologist thought I had an internal inflammatory condition like CIRS. Natural Medicine doctor tried to put me on 7 daily supplements and dietary restrictions saying that my blood work and a diagnosis didn't matter.

I'm going to have a sleep study consult because I have restless legs at night and I've become more and more of a light sleeper, even if I try to get 9 hours of sleep and I take an OTC sleep aid nightly.  My new cardiologist is going to have me do a stress test again and a 2 week heart monitor to determine if I now meet criteria for POTS or still in a general dysautonomia category. 

I'm so worried that I'm doing all of this and I'm going to get the same answer I got 7 years ago: general dysautonomia with a medication for water retention.

I am mildly worried about Cushings because of the hump on my back, but I don't have the blood work to back that up and my grandmother also had a hump.

How can I advocate with my doctors when my blood work is normal and I just may not be "sick enough" for medication or additional testing? I've already had doctors tell me that it could be anxiety or somatic, but after 7 years, I know that isn't true. Any helpful suggestions to advocate without coming across like I WANT TO BE SICK?

 

[MomtoGiuliana]

Welcome to the forum.

Sorry you are having so many difficulties and not good answers.

This may be helpful to you:

 

[Sarah Tee]

@Wanderland, I’m sorry you didn’t get much help when you last tried.

This lecture from Dysautonomia Int. might be helpful:

https://vimeo.com/641527663