I am not an endocrinologist nor am I a physician. I have great respect for those who attempt to understand the complicated world of endocrinology as it has been revealed to me through my son's panhypopituitary status. It has certainly taught me how complex and convoluted it is to manage all his missing hormones.
That said, my son continues to benefit from a reduced appetite on the oxytocin overall. HOWEVER, there have been some "side effects" and other confounding variables that we are still trying to figure out. To lay out the observations:
1. He seems to be more tired after having started oxytocin. He has been more sleepy, for example, in the middle of the day when he would not be normally. He did appear to have some symptoms of illness so we ended up having to "stress dose" by doubling up on his hydrocortisone. This seemed to allay the day time somnolence.
There has been some discussion among others who take oxytocin that other hormones become affected by the addition of a new one (in our case, oxytocin)- some report that corticosteroids will require raising, some report that they require lowering. Who the heck knows or could understand that?! Because oxytocin is also made in the hypothalamus and released in the posterior pituitary and has antidiuretic properties, some also report being able to eliminate or greatly reduce vasopressin replacement (DDAVP) while on oxytocin- this has certainly not been the case for Sasha who continues to take an extremely high amount of the DDAVP (anti-diuretic hormone) AND still manages to have very high sodium levels.
2. Despite his lowered appetite, Sasha has put on some weight very recently (2 kilos in the last week). We know that this is not "water weight" since he has Diabetes Insipidus and since we measure his sodium levels with his weight. Some theories to possibly explain his recent and rapid weight gain with lowered appetite:
a) His double dose of corticosteroids may have caused an increase in his weight since he was double dosed in the last week due to illness.
b) His other hormones (thyroid and growth, for example) may also be thrown off by the addition of the oxytocin. We had these levels tested today and are awaiting the results to see if they will require changing/raising since both insufficient GH and insufficient thyroid replacement can cause weight gain.
c) We just returned from a weekend at a family camp where they did not serve our usual low carb food choices. He did not overeat by normal people's standards but because he has HO and is a hyperinsulin secreter, carbohydrates are like crack cocaine for him. Even eating a little bit more (as in adding one sugary dessert per day and one serving of bread or potatoes per day) has historically caused him to gain 5 pounds in one weekend!
Strangely enough, when we returned home from the family camp yesterday afternoon, we got back to our normal low carb lifestyle. Sasha ate a salad for lunch and was happily sated by it. He ate another hearty low carb salad for dinner and didn't even finish it. I don't think he even asked for a dessert. For breakfast today he ate his normal breakfast (omelette, small serving of fruit) and for lunch he had a tostada with carnitas. His appetite was quite modest and he appeared to be quite satisfied in the way we have observed him to be since his oxytocin has been working.
We have a working hypothesis that the combination of the the increased steroids in the last 5 days and the increased carbs over the weekend may have caused the weight gain. We are waiting to find out about his GH and thyroid levels to see if they may also require raising. I will keep you posted as I learn more and try to figure out this mysterious thing we call the endocrine system!
Feel free to share your comments and observations about this post, especially if you have personal or professional experience adding oxytocin to your cocktail of HRT medications! Thank you!
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