I guess I can''t vasoconstrict

[Shane]

Really scratching my head on this one.  As I have said I was negative on the TTT for OH and POTS, but really believe there is some ANS dysfunction here.

I don't get blood pooling in my legs,  I do get a bit lightheaded (initially) when I stand up (HR settles quickly never tachy), I could stand up for hours, not suffering most of the other orthostatic symptoms, but...

       I take a hot shower, step out and dry off...might as well go to bed I am gassed.

       I wake up in the AM after a great warm sleep, on first movement I get a chill in my back and suffer with low temps for at least 1/2 the day.

       Fatigued and feel like its 9PM all day.

Its like my ANS doesn't know how to vasoconstrict anymore (strangely I'd assume I have blood polling or worse dizziness) 

I've read the factor "sympathetic withdrawl" which seems to say that part of the ANS isn't getting activated.  

My theory is lack of vasoconstriction is causing these symptoms and robbing my energy... does that make sense?

 

[Delta]

Hi, Shane,

I've had the "shower thing" you mention, only with hot baths, which I prefer to showers unless I'm washing my hair . . . I've always liked them pretty hot, and I'd be fine when I go in but wiped out when I come out.  At first I thought it was just a hard day at work but I finally realized it was the heat.  So I take them not quite so hot now.  One of our nieces was telling me how she got woozy when taking a hot bath so I told her when that happens, turn on the cold water fast for relief!  I'm not sure how vasoconstriction plays into this, as I am still learning, myself!  (Re: the TTT, my understanding is that someone will not necessarily test positive every time because symptoms aren't the same every day).  Good luck!! 👍

[yogini]

If you are generally fine standing it doesn't sound like you have trouble with vasoconstriction. 

[Pistol]

@Shane - To me eveything you describe sounds like OH. TTT's are not the golden standard ( as per my autonomic specialist ) and there are many false-negatives (less often false-positives but they happen too). Do you have a way to measure your BP at home? It probably would be best if you take your BP during these episodes and keep a record of your readings as well as your symptoms.  That way you can present them to your doc. 

[Shane]

Thanks everyone.  

I've been thinking if wasn't being bombed with low temps 96-97 (basically all day), I don't think I'd really be that non-functional.  My body just doesn't feel warm ever, except maybe at 9-10pm.  Seems to burn all my energy all day. 

I have noticed my resting heart rate is often around 55, do know that it matters.

Has anyone had success with a drug that helps with body temps?

[StayAtHomeMom]

Curious, have you ever had your thyroid or cortisol checked? Other things besides autonomic dysfunction can cause what you describe. 

 

Starting heart rate doesn't matter that much. It is the jump that matters. For example if you start at 50 and stand up and it stays 80 you could have POTS. 

[ks42]

I agree with StayAtHomeMom - there are many other things that can cause the symptoms you're describing other than autonomic issues, or issues with vasoconstriction. Hypothyroidism runs in my family, and all the family members who have it experience low body temp, wooziness getting out of the shower or in hot temps, and low resting heart rate. One of them has adrenal issues as well (that would be found with a cortisol test) that she believes causes some of those symptoms.

[Shane]

All endocrine tests, TSH, T3 free, Antibodies, serum Cortisol ... all normal.. T4 free (above normal), Reverse T3 (above normal)  Endo seems unconcerned.

Have CRH stimulation test next week.  I assume if I had a thyroid problem it would already have shown up.

[ks42]

Interesting. I have a friend with above normal reverse T3 and free T4, with normal TSH and free T3. She was diagnosed with Thyroid Resistance Syndrome. It is my understanding that thyroid resistance syndrome can present with all the classic thyroid symptoms. It's apparently pretty rare, though, and maybe your endo's already ruled that out.

[yogini]

On 6/20/2018 at 7:57 AM, Pistol said:

@Shane - To me eveything you describe sounds like OH. TTT's are not the golden standard ( as per my autonomic specialist ) and there are many false-negatives (less often false-positives but they happen too). Do you have a way to measure your BP at home? It probably would be best if you take your BP during these episodes and keep a record of your readings as well as your symptoms.  That way you can present them to your doc. 

You're very right that the you can have dysautonomia without a positive TTT.   

But Shane he says that he can stand for hours without getting orthostatic symptoms - other than feeling initially lightheaded (which is what some normal, healthy people experience).  The part about being ale to stand for hours without getting symptoms makes me think it isn't OH.  People with OH and POTS have symptoms being on their feet for prolonged periods - maybe not all the time, but at least sometimes.

[Shane]

@ks42thank you. I will ask the Endo about this, I do know from reading on this Reverse T3 is basically ignored by most Endos I only found it by paying for the labs myself.

@yoginithank you. That is helpful, I only am bothered with the head rush/pounding for like at worst 30 seconds, and as I said I could stand for hours.  Also, would agree with OH but I just tried a poor mans OH test at home and no change in BP, as well during the TTT my BP stayed constant as well.

In the running still for me are: 1. orthostatic "something" 2. Endocrine 3. (maybe I guess) CFS 4. Looking for something else like (say) sleep apnea but I don't see at 21 and not overweight and I don't snore so seems remote. Can't shake the fact that I am just hammered by hot showers, wake times/morning are brutal, and fatigue doing nearly nothing (plus no diagnosis after all these tests) just seems like autonomic dysfunction to me.

[Guest KiminOrlando]

What time of day were your cortisol levels taken? 8am?

Have they looked at metabolic type diseases?

[Shane]

@KiminOrlando thank you. It was taken at 9:00 AM and apparently was a bit above normal. Don't know the exact number. Can you give me an example of a metabolic type disease?

[Guest KiminOrlando]

I wish I could remember the names. Many are genetic, so you would have noticed problems from birth. Those can generally be ruled out. It was the spontaneous mutations that they were looking for in me. I remember they also took a bone marrow biopsy because they thought my mitochondrial DNA had been impacted somehow. All were negative for me. 

I wish I could help you more. All of this is a long shot anyway. I would try a place like Mayo or Cleveland Clinic where they check for all this weird stuff. It doesn't sound like you even have typical symptoms of a rare disease, which makes things even more difficult to find help outside of these big clinics.

If you go or when somebody figures this out, please update us. Every little mystery that is solved can help someone else. I hope you find answers and I will keep you in the back of my mind as I continue to read and learn about my issues in case I blindly stumble on something that sounds like you.

[ks42]

Yes, endos certainly seem divided on whether or not T3 and T4 by themselves are diagnostic of anything - some endos tend to just dismiss them if not in the setting of abnormal TSH. However, I went through several endos before I found the one I'm with currently (she travels around teaching other endos how to diagnose things) and she says any abnormality in any thyroid hormone - T3, T4, TSH, TPO - whether by itself or together with other thyroid abnormalities - is cause for further investigation and could likely indicate thyroid disorder. She also feels the same of any cortisol abnormality - slightly high or slightly low she says should not be ignored, and can indicate issues with adrenals, pituitary, etc. So you say your cortisol was slightly above normal - that's still an abnormal result that I would personally pursue, although it sounds like you have a CRH stim test coming up, so sounds like your endo has that covered

Also, it has been my experience that they're generally pretty strict about drawing cortisol exactly at 8am, because that's the only time it's really accurate, for the lab values they're using. I had mine thrown out twice because once it was drawn at 8:30 and another time at 8:40 due to the fact that the lab was busy and didn't get to me right at 8. Now if I have a cortisol scheduled, I always tell the lab when I check in that it's an 8am cortisol, and if they haven't gotten to me by 8:15, I leave and reschedule.

Again, I'd mention that brutal symptoms in the early mornings, symptoms brought on by heat (like hot showers) and fatigue from doing nothing at all, are not exclusive to autonomic dysfunction in any way. In fact, those symptoms don't exist in all cases of autonomic dysfunction, which is why they're not used as diagnostic criteria for autonomic issues (at least not at the autonomic centers I've been to). They are, however, incredibly common in a large number of other diseases, including metabolic, endocrine, a plethora of autoimmune diseases, and even some neurological / neuromuscular diseases. Not saying you *don't* have an autonomic issue (only your doctors can do that), just saying there's a lot of stuff out there to look at (or perhaps you've already ruled it out, and that's how you came back to autonomic dysfunction?).