I was diagnosed with DI about 11 years ago. It took doctors 7 months to finally figure out what it was. During that time, although I was severely dehydrated, I gained almost 80 pounds. I thought that after I was diagnosed that the weight would come off. It didn’t. i am still having a difficult time to lose weight consistently. I don’t know if it has to do with my DI or something else. Has anyone else had this issue?
YES!!! I have had the same experience. I gained weight very fast when I came down with DI. I had never had a problem with my weight before, even after having two children. I am 30lbs over weight in my opinion and I eat very little. I am active also. The weight is all around my middle and face. I have been doing a little research on the internet and I am going to get my doctor to do the blood test to check the level of Cortisol. Below I pasted some information I have found that I think is worth reading since we already know that my pit gland is not functioning correctly. I don’t know that this is my problem but I think it is worth looking into. (see below)
A cortisol test is done to measure the level of the hormone cortisol in the blood, which may indicate problems with the adrenal glands or pituitary gland. Cortisol is produced by the adrenal glands. Cortisol levels increase when the pituitary gland releases another hormone called adrenocorticotropic hormone (ACTH).
Cortisol has many functions. It helps the body break down food for energy (metabolism), and it helps the body manage stress. Cortisol levels can be affected by many conditions, such as physical or emotional stress, strenuous activity, infection, or injury.
Normally, cortisol levels rise during the early morning hours and are highest in midmorning (about 7 a.m.). They drop very low in the evening and during the early phase of sleep. However, if you sleep during the day and are up at night, this pattern may be reversed. The absence of this daily variation (diurnal rhythm) in cortisol levels may be one of the first signs of overactive adrenal glands, especially Cushing’s syndrome.
Two blood samples may be taken: one in the morning and another in the afternoon. This test can also be done on a sample of urine collected over 24 hours (24-hour urine sample).
I know you posted this a while ago, but I am new to the website and YES, I am going through the same thing. I gained 60 pounds in the 3 months it took for my diganosis and I have had trouble getting it off as well. I have worked HARD since May of this year at the gym and eating healthy and CANNOT lose any weight. I actually have an appointment with my doctor on Tuesday because I want her to draw some blood work in terms of this so I am glad I saw this posting. I was diagnosed 8 years ago as well and never had weight problems before that either. I will let you know how mine turns out, but I am glad to see there are others as well.
Please let me know how you make out. My son had about a 30lb weight gain and has not been able to get it off. He if very active in sports and eats healthier than anyone I know.
I was diagnosed with DI after the birth of my first child 33 years ago, I had not had a problem with weight gain until I had a hysterectomy at 42 and since then I have gained 80 lbs. and no matter what I do I can not get it off. I have gone to 3 different endocrinologists complaining about this and still no answers.
Recently, I switched to a D.O. and he has run Food Toxic Syndrome tests and discovered 15 food allergies, still no weight loss being on the program for 12 weeks. I have had CT’s and MRI’s run on my abdomen and pelvis…results nothing! I, too, have done the blood test, and urine test for Cushing’s Syndrome which turned out negative and I am in the process of doing the saliva test to check cortisol levels.
This has been extremely frustrating for the last 15 years. I also have hypothyroid disease which was diagnosed about 10 years ago…thinking it was probably the answer to weight gain,but taking synthroid has not helped in that area…just a month ago my new doctor put me on Armor Thyroid and still no change.
I would love to stay in touch with those of you who have this problem…of no matter what we do we can’t seem to lose weight! I am actively seeking God for His wisdom and answers and aggressively researching for medical information.
I can’t help but think, it has got to be related to the DI. Tomorrow, I will go back to my D.O. He is also concerned that my body is insulin resistant and is trying me on a low dosage of Metformin. In a month I have not noticed any difference!?!
I will keep those of u who are interested posted and maybe we can be a help to each other.
I will let you know how my appointment goes. I know that when I was diagnosed that my doctor thought in the begining it might have been cushings because my weight gain and the fact that it was in my face and belly. I don’t think he ever tested me for it though when the DI came back positive. He attributed my weight gain to the massive amounts of Slushies I was drinking (high sugar).
For those of you who have been gaining weight, yet are physically active and maintaining a healthy diet, could you be retaining too much fluids? You know, do you still drink large amounts of fluids once you’ve taken your DDAVP? That could be the problem.
You’re on the DDAVP but you still drink lots of fluids and go void maybe twice a day. Just a thought. In my situation, I have a problem gaining weight. I eat constantly, sleep throughout the day when I don’t have to work, but I haven’t gained a pound. I’m 25, 5’3 and weigh 110lbs. My weight fluctuates but never goes above 113 lbs. The highest I’ve gone since I’ve been diagnosed 4 years ago was 120lbs (but that was because I went on a fast food diet for about 3 weeks).
Have you tried going on a low carb diet? Someone close to me has tried it and she started seeing results within weeks. She’s still on it and her weight is still dropping. The only down side of it? Well, once you get back eating them carbs, you start gaining weight again. But I’m sure eating carbs moderately won’t hurt you so bad once you reach your ideal weight. You know what else might work? A stationary bike. 15-20 mins a day 3 or 4 days a week might also help. Did it in physical therapy and within 2 weeks I’d started to see some changes.
I went to my doc today. She is going to run a thyroid and cortosol test, but she really doesn’t think that is the problem. I have really high cholesterol as well so she is going to send me to see a nutritionist as well. Maybe they will come up with some type of diet that works for me with low sodium. It is so hard to eat that way when my husband loves steak and potatoes! I guess I just have to put my foot down and say no to the sodium!!! Oh well. I will let you know how the nutrition counseling goes. Maybe someone will tell me how to eat healthy for a person with DI. But 10 bucks the nutritionist won’t know what DI is either!!!
To those with weight problems and DI.
I went to my Dr. last week and lost 6 lbs. PTL, I hope it continues and is just not a fluid loss. I still continue to drink a lot even with the DDAVP.What is the average intake of fluid most of you drink that have been on the DDAVP? I probably still consume 64 fluid ozs. at least.
My exercise routine is pretty intense, so much so that I have been told to cut back… I have tried low carb diets…Atkins, South Beach, Hilton Head Metabolism, LA Weight Loss, Weight Watchers,Hoodia, etc. u name it …I’ve tried it without much success.
I will continue with the saliva test for cortisol levels re: Cushings Syndrome and stay on Metformin and Armor Thyroid until I see my Dr. in January.
Hope everyone has blessed holidays,