Any Of Your Docs Made The Connection: Hypothalamus And Ans???

[CharmedLinz]

Quick and to the point ???

Fingers not working well, Mom had to go get me Dragon today, haven't installed yet.

Just wondering if anybody has had a Doctor that has actually made the connection between the Hypothalamus being in control of the ANS and Endocrine System???

Both my Endocrine System and Autonomic System are really messed up and it seems logical to me to blame this on a malfunction of my Hypothalamus.

Since the Hypothalamus controls both things in a trickle down effect.

Every time I mention this to a Doc and the fact that I have had head trauma and birth trauma they just blow off the Endocrine part as being related at all.

[ramakentesh]

Years ago some did particularly in hypovolumic patients but the research is now focusing on hemo dynamics, peripheral volume regulation and cerebral autoregulation.There are papers pending on autoimmunity as well.

[ramakentesh]

Stuff on autoimmunity is pending

[POTLUCK]

The hypothalamus is in the temporal lobe of the brain, and head trauma often results in Temporal Lobe Epilepsy, and 81% of CFS/ME patients and zero controls had decreased ejection fractions suggestive of dysautonomia, and 90% could be identified by there temporal lobe epileptiform discharges and Temporal lobe epilepsy and they believe that CFS/ME dysautonomia is likely related to the kindling effect of these epielptic discharges. This connection is here...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022475/

I may go back to trying antiepileptics for this, as whatever I had 20 years ago that resulted in Dysphoria/cognitive problems and was diagnosed on EEG as TLE got better on antiepileptics, then after 20 years in 12/09 this similar condition with a postural HR change came about. My original TLE doctor by the way believes TLE is a mitochondrial problem, and uses many of the mito supplements in treating his TLE patients.

[ramakentesh]

THere is some interesting very recent work on CNS function in POTS/CFS/Dysautonomia that looked firstly at various proteins and inflammatory markers in the spinal fluid of patients.

Fast forward to the very recent work on neurocognitive deficets in CFS with POTS and the other work on cerebral lactate levels and the picture is perhaps starting to take shape.

[firewatcher]

I've had three of my docs make the connection. The problem is: there is no way to fix it and almost no way to treat it! We/they don't even understand all the connections between the hypothalamus and the rest of the body! Even now, no one understands what all the hormones do in the body! I can cite countless examples from melatonin levels triggering puberty to vasopressin effecting agression/bonding.

The only thing that I've had in acknowledgement of this was a comment by my OB/GYN: "Either your pituitary or your hypothalamus is shot, there is nothing we can do till it fails completely...and then we just replace the hormones with pills."

HOWEVER! Head trauma is a well known cause of pituitary dysfunction and your pituitary hormone levels should probably be checked just to make sure something can't be done to help. I had to go to a specific Pituitary Endocrinologist for this.

[POTLUCK]

There are many very clear connections. The hypothalmus is a regulator for many of the bodies functions, and recieves feedback from many parts of the body, through many mechanisms. The article above has over 100 references making some of the connections. It seems to me that it is likely that most of the problems of POTS stem from just one thing, but that that thing is likely to be different in different people, with common pathways that result.

There does not seem to be nearly as much research into POTS as other severe medical illnesses. When you consider the level of dehibilitation most of the people on this site have and the number of people who have this illness I would expect more. I suspect part of the problem is the effects are not as visible on the outside.

It also frustrates me that there are so few doctors treating this illness and no algorithm for treatment for the primary care physician. A primary care can begin the basic testing with algorithms developed for most illness, recommend basic treatment and refer to specialists. Instead most doctors do not even know what POTS is. ( and as Claire's hysterical comic illustrates are not always even willing to google it .)

Firewatcher did your doc really suggest your " hypothalamus is shot" as a possibility? That does not really suggest looking into things much.

[jenglynn]

Firewatcher,

Question.... I've been struggling with "thyroid" issues for the last several months. My TSH is hyper ( I think .06 last time- 2 years ago it was 2.2 ) but my T3 and T4 is more between normal and hyper. No one has yet to figure ths out but the pituitary gland has been tossed at me a few times... I've had multiple TBT and 9 concussions. What does the brain injuries do to the pituitary and do you know what signs I would look for? Than you!!!

Jen

[sue1234]

Jen, brain trauma can cause someone to be hypopituitary, not always, but definitely should be looked at closely in someone like you. In the case of thyroid, you would see below range TSH AND below range FT4 and FT3. You would have low ACTH, thus low cortisol. It would make some or all of the pit hormones low, thus not stimulating their target organs in the body to produce hormones. Someone with complete hypopit would need to replace thyroid, cortisol, female hormones and growth hormone (hope I didn't leave one out).

And, I agree with you that researchers are not digging enough to potential causes of all this!

[firewatcher]

Yes, my doc did suggest that either my hypothalamus or pituitary is "shot." I don't have anyone looking into anything at all at the moment. Right now, they expect it and are just waiting...I hope a LONG time!

As for hypo-pit, there can also be vasopressin that needs to be replaced. Head trauma can cause diabetes insipidus as well as incomplete pituitary failure.

[HopeSprings]

I suspect part of the problem is the effects are not as visible on the outside.

Yup, that and the fact that it's probably not going to kill us - although some days it feels like it could.

[issie]

I was looking at the article that Potluck had posted earlier and thought maybe in light of some recent discussion it deserved a repeat. It can explain a lot of our POTS symptoms and although rather long - has some very good information in it.

Take a look at it again and you might find that it might answer some questions that have recently come up.

Issie

[POTLUCK]

Firewatcher,

Just reading your reply. I am sorry they said that about it being "shot" as it really is no way to treat a patient anyways. When you say they expect it and are waiting, you mean to see if levels will change? Does this mean someone is checking and following levels? I hope a LONG time also.

[firewatcher]

POTLUCK,

My endocrinologist does quarterly bloodwork and hormone panels to monitor me. Right now, the female hormones are low, and "barely adequate."