DEXA: Low T score as well as low thyroid and low testosterone. Anyone else got osteo ?

[PeteB]

Just had a DEXA bone density scan as part of my endo's results capture for diagnosis.

T Score range is -2.9 -> -2.1 (corrected to my ethinicity, sex and age)

So basically not osteopenia but just dropped into full osteoporosis.

At 45 yrs old

Just interested if anyone is taking treatment for osteo?

Has it improved? How long did it take?

Pete

[Ansteynomad]

Oooh, this sounds promising! Astoundingly, despite 38 years of dedicated smoking and everything else, my bones are OK, so I can't help with your query other than to say that my friends of a certain age who are being treated, generally show poor compliance because of side effects. Have a look at the National Osteoporisis Society's website for information.

Has he checked your vitamin D?

[PeteB]

Thanks for the reply.

Vit D is 101.1nmol/L

D2 = 8.3nmol/L

D3 = 92.8 nmol/L

So apparently adequate.....

I do have high calcium in my bloods.... so to me (the layman) I think it's leaching out of the bones or maybe just not getting in, despite good calcium intake.

Could also be the carbonated water I drink? Just a random thought?

No thyroid nodules on ultrasound, yeah.

Endo thinks is a Pituatry thing and lack of testosterone probably causing the bone density loss.

But a whole suit of other blood tests to go and back to endo mid March.

Pete

[bantam12 in reply to PeteB]

High calcium levels are not good, have you had PTH tested ? with osteo and high calcium pth disease should be considered. I have high calcium, high pth and osteopenia and have hyperparathyroidism.

[PeteB in reply to bantam12]

PTH : Para Thyroid Hormone ?

If so, then yes, this is on my next set of blood tests along with bone profile and a million other things.

High calcium not good. Ah. (insert word!)

Quick search reveals...

Primary hyperparathyroidism which leads to hypercalcaemia.

hypercalcaemia = weakness and fatigue, depression, bone pain, muscle soreness (myalgias), cognitive impairment and osteoporosis.

I'm going to stop looking now until I have a diagnosis.

At least we are getting closer I hope.

[Angel_of_the_North]

I think you also need magnesium and boron to make bones, and possibly strontium as well. Taking extra calcium can actually make things worse. I read most people in the Western world have too much calcium and not enough of the others. I don't think you absorb much calcium from carbonated water - it is probably even less effective than calcium carbonate supplements (aka chalk). Phosphorus can cause calcium loss, which might be relevant if you are a big meat eater or drinker of fizzy pop.

[PeteB in reply to Angel_of_the_North]

Yes they say natural (not synthetic) strontium works well.

[PeteB in reply to Angel_of_the_North]

Is phosphorus and phosphate the same thing?

EDIT:

NO

Phosphorous is an element

Phosphate is a molecule (which I think contain phosphorous atoms)

[PeteB]

I have

below range selenium

above range chromium

high range calcium

above range sodium,

below range bicarbonate

very high above range phosphate

I've got £1200 of blood tests and private endo to pay for..... GP still refuses to do anything.

Ahh. No holiday for me

[Ansteynomad]

Pete, I think this is progress, but it may also be time to go and have another chat with your GP, possibly about the things he appears to have missed. If he's becoming aware that there is something going on here, you might have the upper hand.

Use your negotiating skills!

[yenool]

How low is your testosterone? Treating that could make a big difference.

[PeteB in reply to yenool]

13.4nmol/L

Which is above the 10nmol/L low range level to be triggered by GP.

BUT I'm hoping my endo will see that I maybe need more to increase strength and bone mass.

[Jessiepup]

Hi, I have osteoporosis (age 42) gastro has put it down to malabsorption of essential vitamins all my life due to Gluten Intolerace .

I have eventually had an iron infusion,I take magnesium, calcium (not the stuff the NHS prescribes) K2, vitamin D.

Don't take calcium anywhere near Thyroid tablets it stops them working.

I chose not to take the prescription medication due to side effects.

This is an excellent forum

inspire.com/groups/national...

Also the national osteporosis uk website is good and they have a free telephone helpline manned by osteo nurses.

[PeteB in reply to Jessiepup]

Thank you for that link. I'll take a read.

[sirmot]

Hi, I also have osteopenia (used to be osteoporosis, diagnosed in my 30s - age 54 now). In addition to the previous good advice, I would emphasise the need for K2 once again and recommend a book called "Vitamin K2 and the Calcium Paradox" by Dr Kate Rheaume-Bleue. K2 helps get the calcium into the bones. Boron reduces calcium loss in the urine. The type of calcium you take is important. Don't take Calcium Carbonate. Calcium Citrate is much better absorbed, but you may not have to take any. I didn't take any for years. Now I take some. My improvement was largely thanks to supplements, plus natural progesterone. In your case it could be a need for additional testosterone. I would not recommend any of the prescription drugs such as fosamax - in the long term they do harm. The National osteoporosis uk website is very good. I would also recommend the book "The Whole-Body Approach to Osteoporosis" by R. Keith McCormick. It's extremely informative. Good luck!

[PeteB in reply to sirmot]

Thank You

[belwom]

I had a first DEXA-scan at 50, which showed full-blown osteoporosis. The second one, 5 yrs later at a different hospital showed only borderline osteoporosis, so there had actually been an improvement, without me being on medication. I stopped taking alendronate six months or so after my initial diagnosis, due to the side effects. Increasingly, there are reports that it does not work, does not decrease fracture incidence and causes its own problems. I take lithothamnium calcareum (red calcified Irish seaweed), a very high natural source of calcium available in powder form from independent health food shops. I also use a magnesium spray, B12 and D3 drops sublingually and liquid iron Ferroglobin. For subclinical hypothyroidism and intermittant auto-immune thyroiditis I take Nutri Thyroid and Adrenal and have recently added 12.5 mcg of T3. As posters above have said, D3, magnesium, vit K and boron are very important for calcium absorption and to direct the calcium to the bones rather than into soft tissues and arteries. Finally, I have lost confidence in DEXA scans and other tests. You need to make sure you have the scans on the same machine at the same hospital as there are several makes of DEXA scanners and they are calibrated differently. I have been told by a private doctor/osteopath that a DEXA scan once every 4 years should be enough and I agree as I do not want exposure to radiation from a DEXA scan every 18 mths as has been recommended by endo. By the way, the endo's clinical assistant at the first hospital told me : " We do not like treating women in your age group as the medicines have very harsh side effects." Unquote. She also told me to take as much exercise as I could and eat as good a diet as I could and supplements and then we 'could see'. Check out the website saveourbones.com for very useful info on supplements, foods and exercises against osteoporosis. There have also been people on here whose osteoporosis improved as their hypothyroidism was brought under control!

[PeteB in reply to belwom]

I'm always wary of websites that continually site their own publication for you to buy.

Do you purchase the saveoutbones guide?

Thanks

Pete

[belwom in reply to PeteB]

Yes I bought it several years ago and have been referring to it regularly. I find it quite useful. I found the book before I found the website actually - but also through the internet.