Autonomic nervous system

[Scottietottie]

Hi 

I've been having blood tests every 6 to 8 weeks for over a year now to try to get my thyroid stabilised. Having been stable - I suddenly went hyper - so they reduced the meds in stages. Eventually I swung hypo again - so now the meds are on the increase.

Any symptom I complained of to my GP she blamed on being hyper. Well when I swung hypo and the symptoms were still there - she had to listen. She did listen - but didn't come up with an answer. She suggested a second menopause but it sounds - and feels - really implausible.

I went home and put 5 symptoms into a search engine and it came back with autonomic nervous system dysfunction. Next time I saw the GP I asked her if it could be. She says it sounds reasonable - and it quite possibly is. Says it can go along with autoimmune. Nothing to be done about it though. New normal coming up.

Take care - Scottie 

[ohiolady]

Scottie,

What are the five symptoms?  I have autonomic dysfunction with Sjogrens.  I am much better now since my blood pressure isn't dropping to 78/48 on a daily basis.  I, also, go through periods of heart rate elevation.  I have gastroparesis.

Sorry, Scottie.

Anna

[anita]

Ditto...what were the five symptoms?

There are many of us here with autonomic dysfunction along with our autoimmune disease...it's quite common actually to have a type of peripheral neuropathy (autonomic is oart of the peripheral system).

[Carolina]

It's funny, I guess I don't have autonomic neuropathy since I don't have gastroparesis and I don't have POTS.  I do get dizzy when I stand up, but evidently my blood pressure doesn't drop, AND I don't have serious dizziness.  It may be more from my PN in my legs and the change in position upsets my balance.

I DO find that my bowel issues have resolved since I started taking gabapentin, however.  Don't know why, perhaps a side effect.  So NO MORE Raisin bran after YEARS of eating it every day.  I sort of miss it!  Odd.

I have a friends with Hashimoto's Anita, and she swears by some sort of treatment for her thyroid and also says that the adrenals should be checked since they are often affected too.

I don't know what exactly she does, she isn't using synthetic thyroxin but 'real thyroxin' I think, but I don't know.

I assume you know all about this, but if you want I can ask her.  She says she had her thyroid treated for years and until she changed the medication she felt terrible.

We all like medical miracles of course.  But I always tend to be skeptical, and thyroid isn't my issue so I don't pay close attention.

Hugs, Elaine

Best wishes Scottie!

[Nymph]

Interesting. I suspected hyperthyroid for awhile and my symptoms turned out to be POTS. Supposedly it's the epinephrine rush-reaction to get your blood back up to your head that causes the shakey, anxious feelings, racing heart, etc. I hope that you find answers and a helpful treatment. Most of the time I am ok if I take my salt tabs, drink tons of water and wear compression hose. But everybody's different.

[irish]

Scottie,  That is very interesting about your thyroid. My son has a very unstable thyroid and he has the same symptom for hypo or hyper. He has had a terrible time getting the doctors to listen, but he finally would walk into the clinic and tell them "you will check my TSH" and it was usually to high or too low and that was why he was having symptoms.

This is the son who has Hashimotos and Hashimotos Encephalopathy with extremely high antithyroperoxidase levels. This is being treated with Mathotrexate 25 mgm a month. I am wondering if you have had this level checked Scottie?? Just wondering if the autonomic and thyroperoxidase can be related. Good luck. Irish

[Scottietottie]

Hi 

I think the only thing they have been checking thyroid-wise is TSH T4 and T3. In fact I am not even sure they check T3. I may mention it to her if it doesn't stabilise soon.

5 symptoms - ridiculous sweating and hot flashes that send hubby to the far side of the bed. Says its like sleeping next to a radiator (goes along with heat intolerance), frequent urination and an inability to hold it which is getting worse. Same beginning to happen with bowels. (TMI?) dizziness when I make sudden head movements. Permanently fast pulse and burning feet. Bad balance.

Blood pressure usually OK but went ridiculously low when I was put on beta blockers so I stopped taking them.

My GP helpfully suggested a second menopause - but I really don't think it is.

Take care - Scottie 

[genko_b]

Hi Scottie:

It all sounds familiar. All of those things come and go with me. My blood pressure used to be really labile (up and down), but has stabilized pretty well recently. Heart  beat races for no apparent reason, then slows down. Gastroparesis also come and goes.

The most annoying is the temperature malfunction. Sometimes very hot, sometimes very cold, with no relationship to the actual temperature in the room. And I went through menopause years ago.

Take care,

Genko

[Pbrain]

Couple thoughts. First, do you have Hashimoto's as a cause of your hypothyroidism? I once read that you can have bursts of hypothyroid. My understanding-may be incorrect, was that the thyroid makes t4 but that during an active immune attack of the thyroid, there's a dumping of t4 during the attack. Idk

Also, I also have adrenal insufficiency (secondary, so I can be ok but am sunk by stressors (mental, physical, and physiological). Postural hypotension can be a symptom but more so from jack if mineralocorticoid. Eat salty stuff and drink a lot of fluids and see if that helps. If you're also very tired, it's worth seeing an endocrinologist about.

AND at times, my autonomic nervous system us all over the place (like now). Diagnosed as dysautonomia. No cure for this, for me. It's also hard to find a doc who will treat it. I ended up at a cardiologist's office because my Endo wouldn't and my neuro wouldn't deal with it (this was a couple ys ago).

[Carolina]

Scottie, all of your symptoms were mine at one time.  I wound up with profound peripheral neuropathy, diagnosed about 5 years into the symptoms .   The neuropathy began developing  about the time the horrific hot flashes with sweat pouring off my face, literally dripping from the ends of my hair started.

At the time I was over 20 years POST Menopausal.  My balance issues got worse, the bladder and bowel issues got worse.......I had anemia, IC, torn meniscus in both knees.  It just kept coming at me.

And my last major diagnosis, CVID, came after about 6 years into the symptoms you describe.  Oh and small fiber neuropathy and a total deficiency of copper (who knows why?).

In my humble opinion it's all the same thing, Immune System Disorder.  Generalized AND specific attacks on my organs/systems.

I feel lucky that my thyroid, kidneys, and lungs have been spared so far.  Of course I don't walk very well...I have canes but don't use them.

I've had PT, and it doesn't help much even tho' everyone thinks it will.

I woke up exhausted today.  I have no idea why except that it's cloudy and going to rain and maybe that's why?

Right now I"m tired of the whole thing.....the complexity, the medications, the mysteries, the changes, the constant changes.

Well, of course, except for the medications, I've just described LIFE, haven't I.  Time to buck up, put on my big girl panties and 'get over myself'.

Hugs,  Elaine