Cold, Weak, Lightheaded, Constipated, Bloated - No Diagnosis

[john redman]

Dear Group. I don't have a diagnosis. My main symptoms are feeling extremely cold, being very sensitive to cold, being lightheaded when I sit or stand, headache after sitting or standing, being weak, bloating and constipation. My thyroid tests are normal with a TSH of 3.17. I have had two neck operations for herniated disks and am wondering if this is coming from my neck. But it seems like dysautonomia patients are supposed to be hot not cold. On a home blood pressure machine my Systolic blood pressure falls as much as 30 points upon standing and my pulse rate goes up as many as 30 beats. Drinking caffeine and eating salt helps a little bit for about 1 day, then are useless. I am essentially bedridden from this. Please help with any ideas of where to go or what to do in the USA. I would like to go south for the winter because of the cold intolerance.

[Dizzy Dame]

Hi John,

A systolic BP falling more than 20 points upon standing qualifies you for orthostatic hypotension. Plus not all autonomic patients are hot...I've met several who are cold all the time (from the low BP).

I'd recommend seeing a neurologist or electrophysiologist (a type of cardiologist) right away to evaluate you and hopefully get you on some medications that can raise your BP. Salt and fluids can help to expand your blood volume, but there are many drugs on the market that can help even more. Plus, the symptoms you're experiencing can be a sign of many different disease processes, so getting everything looked at by a physician who understands the ANS would be very good.

We've all been where you are now: confused, sick and scared, but we're all here to help answer your quesitons, and to let you know that you're not alone.

-Lauren

[MomtoGiuliana]

I have thyroid disease and have done a lot of reading/research. You may have done some reading as well since you mentioned TSH. A TSH of 3.17 may be indicative of hypothyroidism according to some sources. Will your doctor test it again? Every person is different, but I know I feel best when my TSH is under 2.0.

Feeling cold is a hypothyroid symptom--it can also be a dysautonomia symptom.

Have you been evaluated by an electrophysiologist or had a tilt table test?

Hope you get some answers and relief soon.

Katherine

[Ernie]

Hi,

You have to be evaluated by a general practitioner and then sent to the right specialty. It might be cardiology, neurology or something else.

[john redman]

Thanks for all the responses. Now for the big question! Does anything really help someone with my symptoms?

[Sophia3]

Part of Dysautonomia is body temperature DYSREGULATION..thus we need access to heat and AC because we get hypothermia easy and heat exhaustion easily.

Hope you get a doctor to give you a tilt table test to give you a valid dx, and rules out other things as well.

Whether or not meds help you varies from individual and the underlying cause. Most complicated to answer that...could be yes, could be no, could be sometimes. Good luck.

[Tanzanite]

Also, get your adrenals checked, can cause those symptoms.

[Dizzy Dame]

I have many of the same symptoms you have when I'm off medication. My systolic BP usually drops 10-20 points when I stand, and I get dizzy, lightheaded etc. I'm on two medications that help constrict the blood vessles, and I can say without them I'd be bedridden, or close to it. On my meds I'm a part-time student, and while I'm still pretty darn disabled by my symptoms, they're nowhere near as disabling as they would be if I were med-free.

So the answer to your question is a quasi-yes. For many people with your symptoms, medications do help. But everyone is different, and you won't know how you'll do until you and your doctor begin testing things out.

[lthomas521]

In January 2003, the American Association of Clinical Endocrinologists (AACE) recommended that doctors "consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now."

That was over 3 1/2 years ago. Hasn't your doctor been paying attention?

Another possibility is that you have a mitochondrial problem. Thyroxine works by increasing the number and activity of mitochondria in cells. Common treatments for mitochondrial disease include vitamin and mineral supplements. See www.umdf.org