Hypopituitarism Support Group

hi everyone !

I had my first bone density screening about 3 weeks ago. This is a risk assessment heel ultrasound scan rather than diagnosis/full bone density scan.

My T- Score was -2.3 "moderate risk..see your physician" it says.

The "moderate risk" score is from -1.3 to -2.5. Mine at -2.3, is rather close to the "severe risk" score of -2.5 .

Is this possibly related to hypopit? Have you all been tested for osteoporosis?

I honestly thought I would be low risk..no genetic history in the family, until 2 years ago I ran and lifted weights. Until something got worse and I ended up here

I have never had estrogen tests, but my calcium level looked ok in 3/11.

I am underweight and have a lifelong history of ovarian cysts and messed up periods. I am postmenopausal (just).

I am not sure what to do next?...the screening was a community health type thing, but by full MDs.

yikes

I have osteopenia, which is the stage before osteoporosis. So....I would ask for a full screening. They look at the hip bone, spine, and wrist.

Have you had your growth hormone level checked? Growth hormone can be affected (lowered) by SAI and is a cause of osteoporosis. Also talk to your doctor about estrogen replacement. Do you take calcium, vitamin D and magnesium? These all help with bone replacement as well.

I also have osteopenia, but originally (5 yrs ago) was diagnosed with full osteoporosis. That was the point where I decided to try GH. I have improved my bone density significantly since I began GH injections. I also feel much better overall (more energy, exercise tolerance...). Hope this helps.

Lisa

I have bone scans every two years.

My endo told me cortisol replacements are very hard on bones, and couldnt emphasize enough the importance to take calcium.

Also if your GH level is low, you are at risk.

Thank you all for the wise words!

I remember I asked my endo about GH tests when I first met him, he said they weren't usual or something?? sigh...

I will ask again.

I do take calcium and D supplements but at pretty minimal levels.

I have made an appt for tomorrow with my endo to bring him the test results and talk about it.

I expect he will order a full scan first for a better look.

From what I have read now, bone density changes very very slowly over time. To be closing in on "severe risk" it seems like it must be something that has been going on for awhile. Peices of the puzzle...sigh.

you all are a huge help, this sorta took me by surprise

I'm confused about the cortisol replacements being hard on the bones. I had read that taking oral steroids can double the risk for severe vitamin D deficiency which can lead to bone disease or muscle weakness. When I asked my son's Endo about this (he is 2, and taking Hydrocortisone, synthroid and GH injections), she said no -- because it is a replacement of what the body should be making -- she explained that it is a REPLACEMENT dose, not a THERAPEUTIC dose. Any time we raise concerns over long-term use of HC, we are reassured that because it is a REPLACEMENT dose, that some of the concerns associated with using HC aren't applicable in this situation. But then I come on here, and read about people having to take high amounts of calcium supplements and vitamin D, etc. When I mention this to our Endo, she said she disagrees. I just like to be informed so I know what to expect for my son's future...

Your endo is correct. One problem that adults have is that many have not been put on growth hormone, or have been put on it late. Lack of GH in adults leads to osteoporosis. Also chronic steroid replacement at too high of a level leads to brittle bones. Properly managed, your son's HC is replacing what his body would be making on its own - which makes those sweet little bones grow, and explore, and get into all sorts of trouble!

THANK YOU for this!! I read every entry on here....and don't understand half of it, but keep reading it all, just in case things pop up that I need to look into/ask our Endo about. When I read what others are taking...and then our Endo tells us the opposite...it makes me doubt. So I REALLY appreciate your quick response and clarification (THANK YOU)

I just came from my endo with orders for a DEXA scan and serum Vit D test,

electrolytes and tsh refresher tests.

Will see what he thinks after the full scan, but in answer to my "why me" wonderment...he said that my biggest risk is my small bones. I am 5'10" but my bones are very tiny, fragile.

A few yesrs before menopause I was found by a DEXA scan to have osteoporosis - with no obvious cause. The only thing they told me was since I'd been totally wheelchair-bound for 15 years, there had been no weight-bearing on my legs/hips, and that is known to be a major contributer to bone loss. To have healthy bones, you really need to have exercise! Most of the time osteopenia/osteoporosis in women occurs after menopause.

I was put on Fosamax, a common treatment given to people are who have osteopenia or osteoporosis. And I had yearly DEXA scans after that.

When I fell and broke my wrist in 2010, the Dr told me to stop the Fosamax - it wasn't working as well as it should. I was instead put on Forteo. Look that up and learn about it - it is a daily SubQ injection of a synthetic type of growth hormone. Expensive - unrealistic to use unless your insurance will help pay for it. And you can only use it for 2 yrs in a lifetime. But it can make a dramatic improvement in bone density. The reason for the 2-yr max is because it is still considered 'experimental'- a multi-year study has not yet been completed in the USA. In drug studies, super-high doses given to rats caused some to develop bone cancer, so it is being carfully monitored in humans (no cases, as far I know). I inderstand Forteo is considered safer in other countries than in the USA.

Make sure you take calcium suplements. Take both calcium citratre (like Citracal) and calcium carbonate (like Oscal) - that will make sure you're allowing both types of calcium to enter your system - they are absorbed at different rates. Make sure you have some food in your belly when taking calcium carbonate supplements - that way you won't feel like you've swallowed a brick. Calcium carbonate supplements are inexpensive and what are commonly found in anything advertised as containing a source of calcium.

Some people like the chewable calcium supplements - they're pretty good. The least expensive form of calcium supplement I've found is the antacid Tums! The only problem with Tums is they don't contain Vit D and you'd need to get a good, inexpensive Vit D supplement. Another good source of calcium is Orange Juice with calcium added - one nice thing about that is calcium carbonate reduces the acidity of the OJ and is therefore easy to drink a full glass all at once. There are several natural food sources that contain calcium - brocolli is an example.

As far as the relationship between loss of calcium in the bones and AI - it appears much depends on the extent of GH from the pit; and from what I understand bone loss is also a symptom of hypothyroid issues. Both are interrelated.

Bones are constantly in flux losing mass as well as getting mass replaced - they never stay the same. High doseages of steroid, like prednisone, taken for extended periods so time have long been known to alter that equality of bone loss and bone gain - more is lost than gained. Fortunatley, most of the time when people take high dosages of steroid it is for a short-term duration, the dosage is quickly tapered off, and there is minimal effect on the bones.

When high doesages must be taken for a long time, it is almost inevitable that bone loss will occur - most of the time this is because the steroid is taken **on top of** what the body is normally producing - it is an extra boost and is higher than norm. Smaller dosages, though, when used as a replacement for what the body is **not** producing as in SAI, are not as much of a threat. Steroids are not then considered a supplement.

I suspect that once you start the calcium and Vit D supplements, ensure you exercise well, possibly start on Fosamaox or some other medication, and find out where you stand as far as AI/throid issues and treat them, you'll see an improvement in the bone scans.