I’ve always been brushed off when bringing up my suspected Oxytocin deficiency. I became Panhypopituitary in 1998, when the trauma following the delivery of my second child caused part of my brain to die. It’s called Sheehan’s Syndrome, and it was assumed that the posterior pituitary, which controls Oxytocin, wasn’t affected by my illness. It was assumed but there was no research into it- either way. Nevermind the fact that my MRI showed my entire pituitary was “without mass”. There wasn’t a test to confirm an Oxytocin deficiency and it didn’t really matter because no replacement drug was available.
The truth is, not much is known about Oxytocin, even today. Word check doesn’t even recognize it as a real word! Well, there is new information. Thanks to a fellow Sheehan’s patient, I found the one lab in the world that does a 24-hour urine Oxytocin test! (Meridian Valley Lab – wesite http://meridianvalleylab.com/) I ordered the test kit with my endo’s approval, collected my urine for 24 hours, and shipped it across the country. My results were 216 in a range of 250-1300. Definitely deficient. My endo looked at the results and asked if I wanted to be a guinea pig. An opportunity to move science? YES! An opportunity to pave the way for others? YES! I will be that guinea pig.
My endo contacted the pharmacy and prescibed Oxytocin replacement for me. Felt like the longest week of my life waiting for the compounded nasal spray. I started treatment 11 March, 2015. I am on a very low starter dose once a day. I’ve decided to blog my way through this journey. I think the most important feedback for me will come from my husband and my children. My hope is that Oxytocin will help balance my endocrine system and promote better over all health; that it will be one more piece missing from the puzzle that is the endocrine system.
DAY ONE – Wednesday 11 March
I have to admit that I wasn’t looking for any effects right away. I noticed something right away tho, can’t really put my finger on it. I’m not sure. It is probably me being excited about the opportunity to start Oxytocin replacement therapy. I noticed a skip in my step on my way into to work this morning. I haven’t felt that in a long time.
DAY TWO – Thursday 12 March
Last night I came down with terrible body aches, sore throat and chest congestion. Of course! What wonderful timing my body has. Today has been spent sleeping off this nasty bug. Only thing remarkable as far as Oxytocin replacement- it is not convenient to use a nasal spray when you have a sore throat.
DAY THREE – Friday 13 March
The first part of the day was rough, but by afternoon I was feeling a bit better. My husband noted how extremely rare that is for me. Normally, even a 24-hour bug will stay with me for two weeks or longer. This one seems to be on the out already.
DAY FOUR – Saturday 14 March
Insomnia last night. Ugh. I literally laid in bed over six hours wide awake, finally fell asleep around 6am, slept lightly off and on for about 3 hours. Wondering if I need Melatonin replacement with the Oxytocin. I was going to wait until Oxytocin was balanced but I might need to start asap.
DAY FIVE – Sunday 15 March
My husband notices I am “calmer” in his words, he also said “like easier going, not as irritable.” I noticed my chronic back pain has subsided some.
DAY SIX – Monday 16 March
I do not like the smell/taste of the nasal spray. I am still having trouble sleeping. Thinking of trying melatonin tonight. Tomorrow marks one week, I think I will up the dose to two sprays, once a day. The original script was for one to two sprays, once a day. I think that’s reasonable.
DAY SEVEN – Tuesday 17 March
Melatonin (starter dose) didn’t seem to make a difference. Things I noticed today. My whole body seems more in rhythm, and I believe once I get Oxytocin to a proper level, we will need to retest and possibly change many other replacement hormones.
DAY EIGHT – Wednesday 18 March
Okay, this is not cool. Round two of the chest cold has returned. My husband’s is back too, so I don’t question my immune system being any more compromised than his. Did I mention how difficult it is to use a nasal spray with sinus congestion and a sore throat? Ugh. No new remarks regarding Oxytocin. Tonight marks the 3rd time trying Melatonin. One thing I have noticed with that, I seem to have amplified emotions for anger and sadness since starting on it.
DAY NINE – Thursday 19 March
I woke up today! I slept through the night! For years, I have laid down and fallen asleep very quickly, but never felt like I hit that “deep” sleep. Usually, I feel like I close my eyes at night and open them in the morning but never get rested. I couldn’t stop myself from smiling.
DAY TEN – Friday 20 March
Well, that sleep thing was short lived. I woke up several time through the night. I’m still fighting this cold. Oxytocin seems to be good for me, I feel like everything endocrine is more in sync. I also feel it is helping me fight the cold, I seem to be recovering just as quickly as my husband.
DAY ELEVEN – Saturday 21 March
Seriously throwing around the thought that Melatonin is not good for me. It seems to amplify anything negative. Besides, it’s hard to decipher what is going on with Oxytocin replacement when I have something else new going on.
DAY TWELVE – Sunday 22 March
Stopping Melatonin for now, I may try again later after I balance Oxytocin and after I am on ADH replacement. I am starting to shake the cold finally! Did I mention how hard it is to use a nasal spray with a cold? I have been taking extra hydrocortisone to help fight the bug. Looking back now, I wish I would have realized it was probably that was keeping me awake at night. I shouldn’t have bothered with Melatonin until after my body had become accustomed to the Oxytocin.
DAY THIRTEEN – Monday 23 March
Over the weekend I noticed a few things. I find it easier to touch people. I find it easier to mean the words I love you. I find it easier to accept and welcome touching from other people. I only woke up once last night to use the bathroom.
DAY FOURTEEN – Tuesday 24 March
I have stopped Melatonin. I have decided that I cannot make any changes to my replacement therapy until I have given Oxytocin a fair trial itself. I have noticed I am healing faster with Oxytocin. I only got up once to use the bathroom again last night, so I would say it is definitely improving my Diabetes Insipidus.
DAY FIFTEEN – Wednesday 25 March
I slept through the night again last night. Seems to be better quality sleep. I wouldn’t say it’s great but I can say it is a great improvement. I think the cold is finally gone and I am getting used to the nasal spray. The original script was for one to two sprays once a day. I am using two sprays, but haven’t noticed any changes since increasing. I am going to split the two sprays into one spray twice a day. Same dose, just dosed differently.
DAY SIXTEEN – Thursday 26 March
Changing the dosing made a HUGE difference! I noticed I had more energy in the afternoon both yesterday and today. I didn’t feel the exhaustion to which I am so accustomed. I felt positive emotions that I haven’t recognized/remembered feeling in a long time. Can’t really place my finger on them but it seems Oxytocin is allowing my endocrine system to have better rhythm and flow as one unit.
DAY SEVENTEEN – Friday 27 March
Today was a rough day. My insurance only covered a 21 day supply of Oxytocin. I have been working since Tuesday to get the next supply approved so I didn’t have any missed doses. On Wednesday, I was told that everything was in order and they would be delivering the next supply on Thursday. When the Oxytocin wasn’t delivered, I called the pharmacy to find out why. I found out that the insurance was requiring a Prior Authorization since the Pharmacy raises the price. Couldn’t get an answer as to why the price changed. Couldn’t get an answer as to why the insurance waited to the last minute to require one, when they didn’t require one last month. I spent hours on the phone, starting at 9am, between my endo’s office, my insurance company and the compounding pharmacy to find out that no one moved quick enough and, being 5:00pm on Friday, we had to call it for the weekend. I was told by the pharmacy that the soonest I could get my next supply of Oxytocin is the end of next week. What? I was devastated, I completely fell apart. I have been without for 17 years, finally get the treatment, to have it ripped from me because of my insurance company! We had dinner plans with friends that we had to cancel because the effect this had on me.
DAY EIGHTEEN – Saturday 28 March
I slept through the night again last night. Can I tell you how amazing that feels? It feels amazing! I woke up still trying to wrap my head around yesterday’s events. I realized that I only did one dose of Oxytocin yesterday, and I wonder if that had any impact on my reaction to the events. But then I realized I have to choose to be happy. No medication can make me happy. Sure they all balance together to help me feel human but I have to choose to be happy when I wake up. Today I decided that I will do just that every day for the rest of my life.
DAY NINETEEN – Sunday 29 March
Nothing remarkable today. I chose to be happy as I rolled out of bed. I may have slept through the night again last night, I don’t recall waking up to use the bathroom. I have set an alarm on my phone for 9am tomorrow morning to call my endo’s office, my insurance company and the pharmacy. I WILL have my next supply of Oxytocin before I run out.
DAY TWENTY – Monday 30 March
The Prior Auth has been submitted and is pending with the insurance company. It is on emergency status. I demanded the pharmacy start the compound, assuming it will be approved. I WILL have my next supply on Wednesday. Oxytocin is helping me in so many ways. Everything seems easier. Everything. Being happy is easier. Smiling is easier. Loving, hugging and touching is easier. Cooking and cleaning is easier. Walking and exercise is easier. My body seems to be working better overall.
DAY TWENTY ONE – Tuesday 31 March
I am still finding out what exactly Oxytocin does for me. I know the current research only reveals a small part of what this hormone’s role in our bodies. I find myself singing happy songs and dancing around. I find myself running up the stairs, and even taking two at a time. I am having dreams and sleeping better. Even on this low starter dose, the benefits keep showing, new ones every day!
DAY TWENTY TWO – Wednesday 1 April
I noticed one new thing. today I seem to handle stress better and need less hydrocortisone on the “bad” days, and the recovery time after illness and bad days seems shorter and easier. They messed up my new prescription. I will not be able to increase my dose, and may have to decrease to make this last to the next fill. Ugh. I’m really anxious to get to the proper long term dose so I can feel the full effects.
DAY TWENTY THREE – Thursday 2 April
Hold onto your shorts, I’ve developed a theory. I’ve often heard the pituitary described as the ignition (like as in an auto engine.) My theory is that Oxytocin works as the belt in that engine (endocrine system), making all the components work properly. The pituitary starts the belt, Oxytocin runs through the endocrine system, making each organ function as it should.
DAY TWENTY FOUR – Friday 3 April
I realized today that I haven’t felt my chronic back pain in over a week. That is such a great feeling. My chronic back pain started about 6 years ago. I noticed a difference right after starting Oxytocin. I also had a depo-medrol injection. I believe the two worked together for a common goal. I wouldn’t call Oxytocin a miracle drug but I will say that it is vital.
DAY TWENTY FIVE – Saturday 4 April
I am sleeping through the night almost every night. That is rare with my diabetes insipidus. The Oxytocin seems to be improving the symptoms of my ADH deficiency. I am having dreams, I think every night. I haven’t had dreams in a long time. I would have them every once in a while. Now, I kinda feel crazy when I wake up from a dream. The funny thing about that is dreaming is normal…
DAY TWENTY SIX – Sunday 5 April
I am feeling more rested and my body seems to be more in sync. I am finding it easier to be happy and enjoy things. I feel myself slowing down and living in the moments.
DAY TWENTY SEVEN – Monday 6 April
I understand why researchers call Oxytocin the love hormone or the cuddle hormone. Hugging, kissing, simply loving and saying I love you is easier when you have more Oxytocin. I’ve noticed an increased desire to be around people. I’ve noticed myself desiring hugs and contact with others. I’ve noticed myself touching more and expressing my love more. It wasn’t that I didn’t love before, I think it was just harder to show.
DAY TWENTY EIGHT – Tuesday 7 April
Nothing remarkable today, but I have a thought. When we put researcher’s knowledge of the molecules with our experience as “Oxytocin replacement guinea pigs” we pave the way for Oxytocin to be added to hormone replacement therapy for all deficient patients.
DAY TWENTY NINE – Wednesday 8 April
One thing I’ve noticed but don’t think I’ve mentioned yet. The only negative thing I’ve noticed lately. I’m not sure that Oxytocin is even responsible for it. I’ve had an increased appetite lately. I’m hungry all the time. When mealtime comes around, I am insatiable. It sucks, I hope it’s not related and tapers off soon. I need to commence beach body, not eat more and gain more!
DAY THIRTY – Thursday 9 April
I see my endo tomorrow. I am excited to tell him the things I have noticed. I am also excited about increasing from my starter dose. We will need to remeasure all my hormone levels to see if Oxytocin is affecting anything. I am grateful for the opportunity to try Oxytocin. I believe it is vital to the entire endocrine system. I am thankful that a deficiency test is finally available. If you are hypopit or PHP I strongly recommend you order the test and rule out or confirm a deficiency. I am happy that my endo was on board with replacement therapy. If you are found deficient and your endo isn’t on board with replacing, I strongly recommend you find a new endo. I am excited to see what else I will notice as I increase to a good level. I guess being a guinea pig isn’t all that bad!