firewatcher

Sometimes, pituitary death does not occur immediately. Necrosis can take a while; in some cases up to 30 years. Sheehan's syndrome is slow pituitary necrosis due to lack of bloodflow to the pituitary (most commonly after a severe drop in BP with childbirth.) If she had pituitary damage due to the concussion and a recurrent drop in BP from NMH, she may have ongoing pituitary damage from lack of circulation to her pituitary. If all her hormones are tanking you need to be careful, a crisis could happen very suddenly. Sheehan's is very rare, and most common in India. A US doc probably would not even think of it or consider it. Her neuroendocrinologist should suspect it or something like it given her pituitary damage.

My OB/GYN suspects this for me since my hormones are slowly dwindling after a huge drop in BP after the birth of my son (8 years ago.) I ended up in shock boots with a really annoying nurse stationed at my bedside.

Be vigilant! Don't accept: "It couldn't possibly be that...it's so rare..."

Good luck!

There is a huge difference in the run of the mill endo and a pituitary endo. Most just deal with thyroid and diabetes, not pituitary issues. I am on HRT for low FsH, LH and Estradiol. I trialled Progesterone and it worsened me and did nothing to regulate my periods. You'll know fairly quickly once she's on it if it would help. Most docs will want you to try it for 5-10 days and stop to see if you get a period. I get grumpy/moody within a day or two. My OB/GYN wanted me on Prometrium to counteract the unopposed estrogen and give me a regular cycle, but it doesn't do that for me. Unfortunately when you deal with endocrine issues, it gets really complicated. Good luck!

If she has confirmed DI, she has pituitary damage.

Concussion is a KNOWN cause for hypopituitarism and she seems to fit the critera. If that adenoma is swelling and receding it would cause crazy fluctuations in hormones. Did you take her to a pituitray endocrinologist? There can be delayed pituitary damage due to damaged blood flow. Have you asked her if she has any breast discharge? It may not be estrogen causing her breasts to swell, but prolactin.

just a couple thoughts...

Has she had her pituitary checked?

I found this:

The Fertility Effects Of Femara. World News Today, April 14, 2009

Fertility problems pester nearly one in every four women, regardless of age, health issues, and race. To help address this increasing issue, scientists have struggled to find the rootstock of the problem of infertility as well as medical ways to assist women in their desire to have children. The idea of Femara and fertility use is one of the most doggedly debated ideas in medical circles.

Femara and fertility treatments are constantly being revamped and reworked to gain a woman?s chances of becoming pregnant. There are two different instances in which fertility drugs can be useful: one, women who are not able to ovulate on their own can be medically stimulated to dream up and release an egg, and two, women that are already ovulating can be stimulated to have an increased chance of pregnancy by the release of multiple eggs during an ovulation return.

However, this change in hormonal levels because of fertility treatments does not always have the desired effects. For one, some women can have multiple births as the end result of taking medications like Gonal F and Follistim. And the increase in hormones can also be problematic for those women with a predisposition or a information of breast cancer. However, Femara and fertility treatments are not linked with increasing the hormonal levels, which makes the Femara a safer alternative for a larger group of women.

Women with breast cancer find that Femara and fertility concerns are congruent. Because Femara, also known as letrozole, is an aromatase inhibitor, it decreases the hull?s ability to produce the hormone estrogen, vital in the conception and pregnancy process. What Femara can do is work with conventional infertility treatments to regulate the amounts of estrogen that are in the body, allowing the woman to have an increased chance of pregnancy without the forebodings of too much estrogen in the body. Or it can be used by itself and naturally increase one?s chances of becoming pregnant.

Other advantages to Femara and fertility is the irritable metabolism of the chemical in the body, which allows it to work on the short term, rather than remaining in the body and affecting the resulting pregnancy as some super ovulation infertility treatment methods can do. In its methodology, Femara can help fertility by allowing the corpse to produce more of its own estrogen in a natural manner by the stimulation of the pituitary gland, rather than introducing additional estrogen in the treatment itself. When the enzyme in Femara suppresses the output of estrogen, rather than the estrogen receptors, this allows the pituitary gland to be activated.

There are some potential side effects to this reduction of estrogen, however, when using Femara and fertility treatments. Hot flashes, mamma tenderness, and minor headaches have all been reported with the use of Femara. Some studies have also shown that there is a risk of birth defects in those that are compelling Femara when they are already pregnant.

Femara and fertility treatments utilizing aromatase are shown to be significantly more impressive in women who have already failed with the use of traditional treatments: Clomid and Serophene, for example. In scientific studies, patients using Femara were capable to ovulate nine out of twelve months and of these twelve patients, three conceived while on the Femara.

Additional studies have shown that Femara and fertility are unmistakably linked. When patients have used Femara, there was an increase in the thickening of the uterine wall, which allowed for firmer egg implantation once the egg was fertilized. This event seems to allow for fewer miscarriages than the traditional fertility treatments. Treatment with Femara seems to be more effective in younger patients than in older women, however, the rates of good are high for those that have already failed with traditional treatments.

I took propranolol for a week and it made my bp higher than normal as well. I don't think it was when it was worn off though. I chopped it up to the fact that since it was keeping my heartrate from being elevated then my body had to manage and keep me upright somehow, so it would raise bp. This is probably a good thing for some, but for me it made me feel worse. I have POTS and I can walk around for the most part without feeling like I'm going to pass out. When I was on propranolol I felt like I would pass out and vomit at the same time. My heartrate was nice and low and my chest pain was gone though. :/ I lasted a week on it before deciding it wasn't for me.

If the heart rate is low and the blood pressure is high on propranolol, it could be from unopposed alpha receptor stimulation or beta 2 antagonism from a non-selective beta blocker. For example in pheochromocytoma (a high adrenaline state from a tumor), pure beta blockers are contraindicated due to unopposed alpha stimulation. Alpha receptors on blood vessels cause constriction when stimulated. POTS patients can often produce high levels of adrenaline. It's interesting, but I notice Dr. Grubb mentions using Labaetalol or Coreg in hyperadrenergic POTS patients. He doesn't specifically mention other beta blockers in his review article. These are mixed beta/ alpha agonists. Even patients not on any medication may when heart rate is lower, blood pressure is higher.

Gggrrrrrrrrrrrrr.......

I went through a cardiology fiasco for something like this six months ago! I was suddenly developing bradycardia (42-50 BPM) and chest pain with hypertension when upright. I finally thought I had narrowed it down to high serum osmolality since it only happened when my dDAVP wore off. Any of the three cardiologists I've seen should have thought of unopposed adrenaline/alpha stimulation...they all told me to ignore it: "Chest pain is common in POTS patients..." I see the cardiologist in a week; guess what I'll be asking him!

For those of you who made it in, what were the exclusion criteria? I seem to remember that I did not qualify when I looked at the exclusion criteria, but I can't find it anymore.

Thanks

Propranolol has been a wonder drug for me. I have upright hypertension, tachycardia and tremors and it has been the only thing to help all those. I also have supine bradycardia (low 40's BPM) so my docs decided that once daily was enough for me, and only before noon. 20mg tends to last for about twelve hours in my body and evenings/nights are not a big deal for me: I'm not as super-tachy as in the mornings.

According to my neurologist, I have had an ongoing "transformed migraine" every day for four years. It is not as bad as my "regular" migraines, but can get there with too much stimulation. Initially, Klonopin or Lyrica both helped. Unfortunately, I needed to keep increasing the dose to get the same effect. Three months ago, I began acupuncture because I did not want to go any higher on the meds. I have now been able to come down to 1/3 of what I had been on and not had an increase in the severity of my headache. Right now, it is the best that it has been in those four years. Sleep deprivation and too much stress/stimulation will cause my headache to spike, but it does not get to the same intensity as before.

If you decide to find an acupuncturist, make sure that they do it ALL the time, not just once or twice a week. Experience is key to success. Also, don't think that an MD acupuncturist is better than a non-MD, you want to find one with more experience, not more titles.

Good luck, I can totally empathize!

Bella,

That was one of the first things that my GP checked for. I have multiple heavy metals exposure from my work, but I am extremely careful. My serum and hair levels all came back within normal limits. He still thinks that I must have some odd, so far untested exposure to something. I'm not so sure since I've had symptoms for most of my life. He says that the only other patient he's seen with symptoms like mine had a heavy metal toxicity from well water.

If you are truly concerned, do a hair test. It checks as far back as you've had the hair.

Personally, I am in that lifetime category. I am improving somewhat, but I have doubts as to whether I will ever get back to anything close to normal, since I've never been "normal."

From Dr. Grubb's article: "Postural Tachycardia Syndrome." 2008

article full text

"At present, only limited data are available on the prognosis of patients with POTS. Investigations are presently underway analyzing the outcomes of patients (overall, as well as within different subgroups); however, some basic trends have been observed. Over one half of the patients with postviral onset POTS appear to make a reasonable recovery over a 2- to 5-year period, with recovery defined as the relative absence of orthostatic symptoms alone with the ability to perform the activities of daily living with minimal restriction. However, some patients do not recover, and a small subset will worsen over time. For the most part, the younger the patient, the better the prognosis. In general, close to 90% of patients will respond to a combination of physical therapy and pharmacotherapy. Patients with the hyperadrenergic form of POTS usually require therapy indefinitely. The prognosis of those patients with secondary POTS is usually determined by the prognosis of the underlying disorder."

PLEASE, only do one at a time! Klonopin is bad enough to come off of! Tell your doc, take it super-slow and be extra good to yourself while you go. I tried to come off my Klonopin and have cut back by 2/3, but I still need that .25mg a day. The other meds just don't work as well without it. Be careful and don't go too fast.

At my worst, I had episodes like this too: flushing, tachy, sudden loose stools, etc. They calmed down once I found the right medicine combo (klonopin and inderal + singulair.) I was also tested for mastocytosis and it was negative. I don't have anything to give, other than understanding. Hang in there!

Chrissy, I feel your pain! It is the beginning of "Doctor Season" for me: time my my 6 month/yearly check-ins with all my docs. I have labs drawn today. All of them say: "Well, THAT's not normal...but it must be normal for you." They don't look any further than the paper on the desk.

Honestly, simple sleep deprivation could cause your head feelings. It totally screws up your brain chemistry and hormones. But, so does any of the other things you've mentioned. All I can say is get copies of everything and keep it for yourself. I've brought labs back to my docs that have been flagged as "abnormal" and asked questions, only to have them tell me they had not looked at that part! I try NOT to see docs anymore, they give me too much grief.

I briefly took bystolic, but stopped when it did not help with the other ANS symptoms (tremor, shakiness, etc.) I have upright hypertension, and bystolic did nothing for that. It also gave me insomnia and a vicious morning headache...I think it lasted too long in my system. I went back to morning Propranolol.

Does an acute inflammatory response temporarily attenuate parasympathetic reactivation?

Jae SY, Heffernan KS, Park SH, Jung SH, Yoon ES, Kim EJ, Ahn ES, Fernhall B.

Clin Auton Res. 2010 Aug;20(4):229-33. Epub 2010 May 1.

Department of Sports Informatics, The Health and Integrative Physiology Laboratory, University of Seoul, 90 Jeonnong-dong, Dongdaemun-gu, Seoul, 130-743, South Korea. syjae@uos.ac.kr

Abstract

PURPOSE: Although observational studies suggest that inflammatory markers are associated with autonomic nervous system function, the causal relationship of this is not clear. We tested the hypothesis that acute inflammation will temporarily attenuate vagal reactivation as measured by heart rate recovery after exercise.

METHODS: In this double-blind randomized study, 24 healthy subjects were assigned to receive either an influenza vaccine (n = 15) as a model to generate a systemic inflammatory response or a sham vaccine (n = 9). Heart rate recovery after exercise testing was used as an index of parasympathetic nervous function and was calculated as the difference between maximal heart rate during the test and heart rate 1 and 2 min after cessation of exercise. Both blood analysis and treadmill exercise stress tests were conducted before and 48 h after each vaccination.

RESULTS: Inflammatory marker, log C-reactive protein (1.9 +/- 1.2 to 2.8 +/- 1.4, p < 0.05) was significantly increased after the influenza vaccine. Heart rate recovery 1 was significantly attenuated 48 h after the influenza vaccination (23.4 +/- 6.4 to 20.5 +/- 4.9, p < 0.05) but not sham vaccination.

CONCLUSIONS: These findings show that acute inflammation is associated with a temporary deterioration in cardiac autonomic nervous system function in healthy subjects.

PMID: 20437076

Unfortunately, it appears that vaccination causes a "temporary deterioration" of cardiac ANS function with even healthy people, so its got to do it doubly so with us. I don't know if I will be getting mine this year; it is a which is worse scenario, the flu or the vaccine. Try to rest up and not stress yourself!

I used to get leg cramps before I regulated my electrolytes. I was going hyponatremic (low blood sodium) due to water loading. Once I realized what was happening and switched to Thermotabs and gatorade these stopped. Are you drinking too much water?

Please don't feel ashamed. Most of us rejoice in someone with improvement! It gives us hope that we'll get better too! I agree with the slow and easy approach. Just do what you can and slowly work up to it. Improvement is a wonderful thing!

At this point, I take one of the American Heart Association articles on POTS like the "Renin-Aldosterone Paradox" to the new doc. I pull it out and say: "I have been diagnosed with this (underlining POTS) by this doctor (underlining the doc at Vanderbilt that dxed me.) Then I give them the article. I don't get any argument after that. If you have any articles written by your diagnosing doctor you could do this too. Good luck, I hate finding new doctors!

My endocrinologist also prescribed a SNRI for me (Pritiq.) It seemed to be the wrong thing to do, so I called my doc at Vanderbilt. He said that for me a SNRI was absolutely counterindicated: I was NOT to take it, so I didn't. I am in the hyper-adrenergic POTS group and have orthostatic hypertension. However, Dr. Grubb apparently uses these in hyper-POTS without problems. I think it will be an individual response, like everything else. What works for one, will not work for another. If you decide to take it, just be careful and listen to your body!

Julie,

Lyme's disease can tank your white count. Could that be your cause?

I had that early in June & was treated...could it still be affecting me???

American Lyme disease foundation

It is a co-infection borne along with Lyme's Disease that tanks your white count. I don't know if it would still effect your immune system or not. Ask your infectious disease doc. Just be careful! Don't be around sick people!!!!!!!!

Julie,

Lyme's disease can tank your white count. Could that be your cause?

My PT and I did some research about two months ago and we have a similar theory. For me, the anaerobic threshold is extremely low, so as soon as I get my HR up beyond 130ish I move into the anaerobic zone. The sticky part is that to increase respiration, my brain then gets over oxygenated, despite the muscles working anaerobically and the brain then shuts things (like eyesight) down with vasoconstriction because it thinks that I am hyperventilating. The only way that I can move without parts just quitting is to control my breathing....basically taking one breath for everyone else's two or three. My O2 turnover is very high due to high hematocrit/RBC and my labs are always high for serum CO2 and chloride. It is a nasty cycle for me and it only makes sense on certain days (today NOT being one of them.....sorry if this made no sense.)

Sophia,

EarthMother has a vegetarian cookbook on Amazon.com. It is called "the 30 day vegetarian," I think. You could PM her for tips or ideas.

I see a therapist to vent. She sees many chronic illness patients and I just can't unload it all on my family; they already worry enough.

Before my official dx, I was told it was a pituitary tumor, Parkinson's, Mitral Valve Prolapse, bi-polar disorder, and on and on. I would research each one and explore my options until the test results came in negative. After my POTS dx, I did the same, which led me here. Now, it takes a good deal more for me to worry. The doctors have to prove to me that I have whatever first, they usually can't. I spent several years looking at other mothers, wondering: "How do they do it? Why is it so easy for them and not me?" I spent a lot of my life wondering why I couldn't get to sleep at night, why I couldn't get up at the right time, why bright lights gave me such headaches, why I couldn't run like the rest of the kids.....

I finally realized that there was only one thing I DID have control over, my own attitude. I can really only do two things: breathe and adjust my thinking. Some days it just doesn't work and things stink, some days are better. The hardest part is forgiving myself for what I cannot do.