Forteo: What is your Experience?

I have been approved to take Forteo for a third year. Since I started Forteo I have noticed that my stomach has become like a round large ball.I am thin, so this is noticeable. I wonder if anyone else has had this happen to them. My internist wants me to have a KobRad Abdominal X-ray. Way too much X-ray exposure for me to have right now, so I wanted to know if this producing stomach is fairly common with Forteo users. I am 77.

Serum PTH has also been known to play an important role in the accumulation of fat through several mechanisms such as https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5729672/
Patient complaints about abdominal fat accumulation are widespread. It wasn't signaled in the clinical trials, so the medical literature will tell you that you are unlikely to experience this adverse effect. Most patients report that their physicians suggest that they are simply eating more or not exercising enough. Cheers to you internest for suggesting imaging. Ask this clever person if an abdominal ultrasound would advantage you.
The link is a bit of a slog, but essentially PTH interferes with the normal death of fat cells and since our bodies keep replacing them anyway we end up with a big belly.
Janflute, is your doctor using bone markers to determine a third year, or is this common practice.

I used Forteo the full 24 months and had no issues as described in your post.

My one remaining parathyroid gland is not working well. Thank you so very much for your very informative reply.

I had very mild tinnitus before Tymlos. Now, on 40 mcg of Tymlos the ringing is very loud at night when I'm trying to sleep. I tried hearing aids, but they do not help when off at night.

Hi @janflute, have you finished 2-year FORTEO already? If so, do you mind sharing your Dexa results? Your case is very interesting in that your remaining parathyroid gland is not working well. Does your lab for pth and calcium level reflect that? The approval of third year of FORTEO is nice! Is the third year treatment for op or hypoparathyroidism or both? I’ve read continuous treatment beyond 2 years with FORTEO may not result in continued bmd increase, although it seems bmd will be maintained. Therefore bone markers maybe very useful in your case, although you’d need a serial of testings. Anyhow, for true and extreme hypoparathyroidism, will the effect of daily bolus of FORTEO mimic that of natural occurring pth, which is fine tuned by serum calcium level at any given moment? Will you be monitored closely re calcium levels as well as by a cardiologist? It’s great that you are under the care of a very skillful endocrinologist! Keep us posted of your treatment progress as your case is so intriguing.

As far as the belly fat issue you raised, I have read many posts describing it. My opinion is our age is the main culprit. I started to have a ‘tummy’ around 57, before using FORTEO. Indeed belly fat is more noticeable in a skinny person. During therapy we all are very focused with nutrition and diet which may cause us to ‘overeat’ a bit. I’m also having a very good appetite. Fatty deposit as a result of excess calories tends to be in the midsection in post menopausal women. In recent months I’ve lost some weight due to increased outdoor activities and a busy schedule and guess what, I notice my tummy a lot flatter! Now I don’t know to be happy with a flatter tummy or to worry about my slight catabolic state, which is not good for bones 🙁

Best wishes!

@mayblin. I hear you. I gained several pounds after making sure I got enough calcium from my diet. It also raised my cholesterol levels, as I was getting a good chunk of it through dairy. Skim milk, fat-free yoghurt, and cheese, plus I also added more nuts and prunes (lots of sugar). Having said that, I did notice even more pounds being added once I started teraparatide 3 months ago. I feel very uncomfortable with the extra 8-10 pounds in total, (130 lbs now versus my ideal “older” weight of 120 lbs). I weighted 103-107 lbs when I was younger. I’m stepping up my exercise, cutting down my calcium through food and supplementing 250-500mg per day, and trying to control my calorie intake more (no more eating 5 prunes a day). Hopefully I’ll lose the weight very gradually. My family doctor suspects I won’t lose bone, as I haven’t had this weight for a long period of time, and if I lose it gradually I should be okay bone wise. But who knows? Thoughts anyone? I don’t feel comfortable with a belly, and I don’t want to get even fatter. It is too hard to lose at this age! I’m 65 years young:)

Started with Fosamax but now Forteo suggested by doc. Wondering if others have experienced many side effects and if benefits have been worth the high cost and daily injections.

Hello @sandybeach4567 - I moved your discussion and combined it with an existing discussion titled, "Forteo: What is your Experience?" - https://connect.mayoclinic.org/discussion/forteo-experience/.

@leeosteo posed a similar question as you and members @janflute, @lkel and @lynn59 all shared their experiences.

@sandybeach4567, how did you do on Fosamax? Did you see any benefit and were able to tolerate the medicine?

I have gained some belly fat but just a couple of pounds in weight.
I had a DXA scan performed in April after 12 months on Forteo. 16% BMD improvement/gain in spine (-3.6 t-score on first DXA), 4% in total left hip. Lani Simpson also confirmed. My endocrinologist is pleased with my results.
Also for the past year, I've been taking Dr. Sherri Betz's online strength-training classes, which are based on the LIFTMOR program. I'm vegetarian and have been on gluten-free diet for over a year since being diagnosed with celiac disease.