30 Years Cushing’s Free!

 

Today is the 30th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 30 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even though I’m when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

Giving Thanks, Day 15: November 1, 2017

From http://www.maryo.co/giving-thanks-day-15-november-1-2017/

I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.

 

It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.

 

I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

 

There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.

 

I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.

 

There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.

 

So, I am very thankful that, for the moment, I am headache/migraine free!

 

Medic Alert Bracelets

This was posted today on Facebook from Jeannie Middlebrooks, an EMS provider. She says “Anyone can message me with questions too!”

I have seen alot of people recently asking for advice as to what to put on their Medic Alert Bracelets, What Kind to buy, etc.
The most common things I see are that bracelets are being bought that look like “normal jewelry” because they don’t want it to stick out.

The other thing is that they are putting the IMPORTANT information on the BACK of the bracelet

Guys I have been in EMS 16 years, and recently Diagnosed SAI this past april. so I have a few things to say on this subject. You can take it for what it’s worth, but please understand this is coming from someone who lives in the heat of the moment taking care of people like us when that moment counts.. When we find an unconscious patient we have several things that we are attempting to do to save that patient, granted looking for a medic alert tag is important, but it is not more important that keeping a compromised airway open, checking vitals, getting an IV, asking family for a history, etc. Looking for a medic alert is usually done en route to the hospital if it is not blatantly obvious upon arrival.

#1 Anything that looks pictures I have posted below, I can 100% promise you, will be looked over in the heat of the moment if you are unconscious. Your family will more than likely be on edge and forget to tell us, or you will be by yourself and no one will know to tell us to look. It looks like standard jewelry.. so I’m not going to look at it.. therefore missing your life threatening emergency.. and if I am one of MILLIONS of first responders that are unfamiliar with Adrenal Insufficiency, I will NOT recognize the signs and symptoms, and you will NOT get the care you need pre-hospital.. leaving your body without the necessary cortisol for that much longer.

#2- If you place your Pertinent information on the back of your bracelet, PLEASE make sure that the medic alert symbol is on the front of the bracelet, BIG AND RED… don’t make it small and pink, or the same color as the bracelet.. yet again. we will overlook it in the moment..

#3- Necklaces are a bad idea.. They almost always get tucked into a shirt, and we almost NEVER see them. they are easily moved.

#4- Your medic alert tag should have your name. What you Suffer From, That you are Steroid Dependant. Where your Injection Kit is location (if applicable), Instructions to give the meds or you will die.. (This alerts bystanders to give you the injection as well.. I can say this because I had a bystander do it based solely on my Medic Alert tag.. she found it, drew it up, and gave it to me), and an emergency contact who can give responders information they need. If you have more than one Critical condition. List the most life threatening in order.

Please Please Please don’t take this post the wrong way. I am saying all of this coming from someone who lives in these moments every day. I know how many first responders are not familiar with the disease that can so easily kill us, and if you are willing to risk your life for the sake of a “pretty” bracelet, then I can’t stop you.. nor can anyone here.. Just know that it is a HUGE risk…

 

medic-alert

What is Addison’s disease?

The adrenal glands are located just above each kidney. They work together with the hypothalamus and pituitary glands in the brain to keep the human body in a stable, constant condition. The pituitary gland, often referred to as the “master” gland, is about the size of a pea and is considered the most important part of a system called the Endocrine System.

In general, the Endocrine System is in charge of body processes that happen slowly, such as cell growth. Faster processes like breathing and body movement are controlled by the Nervous System.

What normally happens is the hypothalamus produces something called “corticotrophin releasing hormone” or CRH. CRH then causes the pituitary gland to produce ACTH leading to the production of Cortisol and ADH by the adrenal glands.

More at Trinidad Express Newspapers: Features | What is Addison’s disease?.

Hypercortisolism Is Associated With Increased Coronary Arterial Atherosclerosis

Hypercortisolism Is Associated With Increased Coronary Arterial Atherosclerosis: Analysis of Noninvasive Coronary Angiography Using Multidetector Computerized Tomography

Journal of Clinical Endocrinology and Metabolism, 05/21/2013  Clinical Article

  1. Nicola M. Neary*,
  2. O. Julian Booker*,
  3. Brent S. Abel,
  4. Jatin R. Matta,
  5. Nancy Muldoon,
  6. Ninet Sinaii,
  7. Roderic I. Pettigrew,
  8. Lynnette K. Nieman and
  9. Ahmed M. Gharib

Author Affiliations


  1. Program in Reproductive and Adult Endocrinology (N.M.N., L.K.N., B.S.A.), Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland 20892; Laboratory of Cardiac Energetics (O.J.B.), National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, Maryland 20892; Integrative Cardiovascular Imaging Laboratory (J.R.M., R.I.P., A.M.G.), National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, Maryland 20892; Critical Care Medicine (N.M.), Clinical Center, National Institutes of Health, Bethesda, Maryland 20892; and Biostatistics and Clinical Epidemiology Service (N.S.), Clinical Center, National Institutes of Health, Bethesda, Maryland 20892
  1. Address all correspondence and requests for reprints to: Ahmed M. Gharib, MB, ChB, National Institutes of Health, Building 10, Room 3-5340, Mail Stop Code 1263, 10 Center Drive, Bethesda, MD 20892. E-mail: agharib@mail.nih.gov.
  1. * N.M.N. and O.J.B. contributed equally to this work.

Abstract

Background: Observational studies show that glucocorticoid therapy and the endogenous hypercortisolism of Cushing’s syndrome (CS) are associated with increased rates of cardiovascular morbidity and mortality. However, the causes of these findings remain largely unknown.

Objective: To determine whether CS patients have increased coronary atherosclerosis.

Design: A prospective case-control study was performed.

Setting: Subjects were evaulated in a clinical research center.

Subjects: Fifteen consecutive patients with ACTH-dependent CS, 14 due to an ectopic source and 1 due to pituitary Cushing’s disease were recruited. Eleven patients were studied when hypercortisolemic; 4 patients were eucortisolemic due to medication (3) or cyclic hypercortisolism (1). Fifteen control subjects with at least one risk factor for cardiac disease were matched 1:1 for age, sex, and body mass index.

Primary outcome variables: Agatston score a measure of calcified plaque and non-calcified coronary plaque volume were quantified using a multidetector CT (MDCT) coronary angiogram scan. Additional variables included fasting lipids, blood pressure, history of hypertension or diabetes, and 24-hour urine free cortisol excretion.

Results: CS patients had significantly greater noncalcified plaque volume and Agatston score (noncalcified plaque volume [mm3] median [interquartile ranges]: CS 49.5 [31.4, 102.5], controls 17.9 [2.6, 25.3], P < .001; Agatston score: CS 70.6 [0, 253.1], controls 0 [0, 7.6]; P < .05). CS patients had higher systolic and diastolic blood pressures than controls (systolic: CS 143 mm Hg [135, 173]; controls, 134 [123, 136], P < .02; diastolic CS: 86 [80, 99], controls, 76 [72, 84], P < .05).

Conclusions: Increased coronary calcifications and noncalcified coronary plaque volumes are present in patients with active or previous hypercortisolism. Increased atherosclerosis may contribute to the increased rates of cardiovascular morbidity and mortality in patients with glucocorticoid excess.

  • Received October 29, 2012.
  • Accepted March 7, 2013.

From JCEM

Other Stuff, Part 1: Cushing’s

Based on one of the comments for my first post (The Beginning), I’m going to mention some of our past medical misadventures here, too.

This one was mine, and it was a doozy!

Seven Dwarves of Cushing's

From a recent post on one of my blogs: A Quarter of a Century

I had my one, and only, pituitary surgery on this date in 1987.  Of course, I was trying to get a diagnosis for several years before that.

I know it’s hard to get a diagnosis now – imagine how hard it was over 30 years ago – before the Internet, Facebook, Twitter, message boards, chatrooms.  No online support – no support anywhere.

Finding any information possible at the Public Library.  Days that you feel like death warmed over, heading out to the library to Xerox medical articles you don’t understand, poring over them at home, trying to find any kernel of hope for what you have.  Then trying to convince doctors when your family doesn’t even believe you.

Finally, a doctor believes you…but he’s the wrong kind of doctor so he sends you away.  Another year goes by.  The endo recommends surgery but there are only 3 possibilities anywhere.  NIH – close by and free, Montreal – they speak French – and San Francisco.

After a diagnosis, 6 weeks of inpatient testing at the NIH.

From my bio at http://www.cushings-help.com/maryos_story.htm

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

 

My whole, long journey with diagnosing and treating Cushings can be found in my bio at http://www.cushings-help.com/maryos_story.htm

Want to read more about Cushing’s?  Check out some of this info: http://www.cushiewiki.com/