Multiple symptoms, possible thyroid or just more Dysautonomia issues?
I am a 20 year old female with average weight and height. So lately I've been feeling absolutely horrible with a bunch of random symptoms. I've been known to have TSH levels on the higher side and I have dysautonomia (diagnosed 2 years ago), but I can't see an endocrinologist for another two weeks. Does this sound like a thyroid issue?
Symptoms and duration:
dizziness (6 years)
palpitations (6 years)
chest pain (6 years)
syncope/near syncope (average 2 times a month, 6 years)
body tremors/twitching (2 years)
cold hands, feet, hips (2 years)
purple fingernails/toes (2 years)
insomnia (off and on for 8 years, constant for 2 years)
joint/bone pain: knees, skull, ribs, left arm, shins (2 years)
headaches (18 months)
nausea (9 months)
So these are my "normal" symptoms, but for the past two months things have been more off than usual including:
constipation, but not hard stools (won't go for 3 days)
straining to pass gas
lower left abdominal pain
lower left back pain
late periods (not pregnant)
extreme insomnia (I'll be up for 2 days at a time)
RE: a part of your symptoms, have they made sure you weren't iron deficient (which can cause rapid heart rate, dizziness, headache)? Have they, with your headaches and dizziness, done a brain MRI and with your headaches and rapid heart rate, checked for Chiari's malformation?
I think it would be smart for the endocrinologist to do a complete work-up with your set of symptoms. Have they done this before?
Have they checked with plasma free metanephrines (fasting blood test) to rule out pheochromocytoma?
Have they ruled out Addison's disease?
Have they looked at your cortisol levels?
With the insomnia, have they looked at your melatonin level?
Your growth hormone indicater- IGF-1?
Your calcium levels?
Have you been checked for sleep apnea? Had a sleep study done?
You mentioned you've been known to have TSH on the higher side, and I'm glad they have come to the step of referring you to an endocrinologist... how long have you been getting these higher side TSH levels? Did your primary care doctor ever order a free T4 level to go along with that?
What were your iron and your ferritin levels at last check?
Hopefully the radiologist would have spotted a Chiari malformation if you had one.
What testing was done before you received the diagnosis of dysautonomia?
The pineal gland (your brain's internal alarm clock), which produces melatonin, is an important one to be properly functioning in regards to sleep. Hopefully, the endocrinologist will be willing to check on your melatonin with your sleep problems.
I guess the neurologist would not conduct the sleep study if you told him/her what I saw in one spot above, where you say you have constant insomnia, which would seem to indicate you've gotten no sleep for the last two years. But if you do have times when you sleep, there are sleep center type neurologists that specifically specialize just in that and I wonder if you could get a referral from your primary care doctor to one of these kind?
I wonder if you've had a holter monitor test done and if so, if you had tachycardia in the night. I know I've experience where my heart beating too fast kept me awake.
Have you seen a GI specialist for testing on your bowel peristalsis, since you are having issues with irregularity of movements and difficulty passing gas?
My TSH levels have been above 4.5 since 2010 with my most recent being 6.0.
I can't seem to find any iron or ferritin results in my labs.
Before my dysautonomia diagnosis I've had a holter moniter, 30 day event monitor, tilt table test, stress test, and 2 cardiac ablations.
I sleep about 4 hours a night (I'm in bed for 9 hours), and some nights I don't sleep at all. I've been thinking about switching neurologists, but I'm hoping this is a thyroid issue and I won't have to add another doctor to my list (I have 6 already).
Haven't seen my GI specialist for the peristalsis yet. Those symptoms have seemed to wax and wane lately so it's not exactly at the top of my list (I don't have a car and it's really hard to find rides to appointments).
I passed out this Friday and because I was shaking so badly my friends took me to the ER thinking I had a seizure. That's when I found out my TSH was 6, I'll know more when I get faxed the full results tomorrow. Seeing my cardiologist tomorrow as well.
Sounds like your primary care doctor should have ordered more than TSH clear back in 2010 with the result you got back then!
Do you have copies of all your previous labs (re: iron and ferritin)? I was iron deficient in the past myself where my CBC was not affected at the time. I believe it was affecting me, even so, with more tiredness, more tachycardia, and more shortness of breath.
Did you have S.V.T.- is that why you had the ablations? It sounds like you had quite a bit of testing for the dysautonomia, but that they didn't rule out some things during the process of testing.
Well, if you were to get a sleep specialist, if it turns out your thyroid isn't causing the insomnia, 7 is the perfect number! :0)
I used to live fairly near where you do! Public transportation on the bus isn't safe in that area for a young lady! Does your medical insurance provide any offer of transportation to a limited number of medical appointments per calendar year you could take advantage of?
Let me know how your cardiologist appointment goes? I know that some with ablations who have P.O.T.S. wind up becoming pacemaker dependent because ablations is typically not a plus if you have that particular form (do you)?
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