DXA Bone Density T score Lumbar spine from -4.0 to -3.6

[pink9182]

Two years ago my DXA Bone Density T score lumbar spine was-4.0 today it's -3.6.

I understand this is still osteoporosis but the results were a little better. For the past two years I have been taking Marine collagen, vitamin D, calcium, and magnesium. I also started Pilates on 11/2021 and I go 4-5 a week.

I have to see my doctor next week, but was wondering if anyone knows if this is an indication that what I'm doing seems to be working?

Two years ago I tried the Boniva and it affected my stomach and back so I wanted to try a more natural approach.

Any comments will be greatly appreciated!!

[Met00]

You should have a score for your hip and/or femoral neck - what were those on the two scans? Unfortunately DEXA scanning has a wide margin of error and results also can't be compared between two different machines, so if your other score(s) has/haven't improved during that time, it could just be that errors were made in one or both scans. Pilates is supposed to be good for bone health, but you wouldn't see an improvement of that magnitude in just a few months.

[pink9182 in reply to Met00]

Hi Met00, the hip femoral neck changed from -1.8 T score to -1.7. The total left hip changed from -2.0 T score to -1.5. I got both tests in the same hospital. They list the technique as Dual energy absorptiometry (DEXA) performed on Hologic Discovery W - same on both tests. I agree I haven't done Pilates for that long, but I have been taking the supplements for 1.5 years. I don't know if this is realistic and I can't wait to see what the endocrinologist says. Thanks for your reply.

[pink9182 in reply to pink9182]

Sorry - I had forgotten to mention that two years ago I was diagnosed with hypercalcemia. I had high levels of calcium in urine, I started taking hydrochlorothiazide (water pill). And the calcium levels went way down so I'm not losing calcium through urine anymore. Maybe this helped too.

[Pte82 in reply to pink9182]

pink9182, a more natural approach includes, in addition to calcium, magnesium, vitamin C and D but with the addition of boron and also annatto tocotrienol for your bones, joints and especially for your back. Dr Jorge Flechas MD has a youtube on boron worth your time. He also states it also stopped him from losing height. You can also get an intro by searching on "nothing boring about boron". Annatto tocotrienol offers many benefits, it's bone preservation ability is expanded in the attached link. Always consult your health care professional before using any supplement.

pubmed.ncbi.nlm.nih.gov/293...

[pink9182 in reply to Pte82]

Thank you so much for your reply and your advice. I will definitely look into your recommendations. Thanks again

[Met00 in reply to pink9182]

I would imagine that stopping the calcium loss is the main reason why your bone density has improved. The same thing can happen when hyperparathyroidism is treated, which can cause too much calcium to be retained in the blood. In that case, I would definitely be happy that your density has improved! I would question your poor spine scores though, as there's such a huge difference between those and your hip and femoral neck scores. The latter scores are only osteopenia, yet your spine score is well into the osteoporosis range; to me that suggests an error with your spine score, perhaps caused by poor alignment on the scanner, for example.

Many of us take Vit K2-MK7 (90-180mcg) or K2-MK4 (45mg) to help direct calcium to our bones. I also take boron, zinc and Vitamin C, and try to exercise regularly, including resistance training with weights and exercise bands.

[pink9182 in reply to Met00]

Thanks so much for your replies. I appreciate your time and your help. I will look into incorporating those into my daily routine. Thanks!!

[Aerobics-Instructor in reply to pink9182]

Was it hypercalcemia (too much calcium in the blood) or hypercalciuria (too much calcium in the urine) you had? or both? I suspect your blood calcium was low (ish) while your urine calcium was too high -- i.e. hypercalciuria). Thiazides usually increase calcium in the blood, by reducing its loss in urine: "By increasing calcium reabsorption from the luminal membrane into the interstitium in exchange for sodium, thiazides reduce urine calcium levels and increase blood calcium. However, if indicated, this effect of thiazide diuretics makes thiazides useful for nephrolithiasis and osteoporosis treatment. Decreased urinary calcium decreases stone development in the kidney, and increased blood calcium is beneficial for patients with osteoporosis and promotes bone health."

I would guess it's mainly the Thiazides that helped your T scores. But they can have side effects. I hope your T scores continue to improve!

[pink9182 in reply to Aerobics-Instructor]

It was too much calcium in the urine. Blood levels were ok. Yes I was scared to take them but I didn't have too many choices. The doctors could not find anything that would be causing this condition. I hope I dont have to take the water pill forever but the endocrinologist hasn't discussed this with me yet. This is all so scary and the treatments for osteoporosis seem worse than the disease. Thanks so much for responding. I have never posted anywhere before but I was so excited of the small progress, I wanted to share with others who understand our condition. Thanks!

[Aerobics-Instructor in reply to pink9182]

I also had too much calcium in urine, with normal blood levels and normal parathyroid hormone. After testing for other causes, doc told me to cut calcium consumption to 300 mg a day total (so no dairy products or supplements). That worked, but I'm worried I won't have enough calcium for my bones. My T score was -3.2 spine, and -1.6 hips. I'm on alendronate (Fosamax) which might stop the decline, but I wonder if your plan is better. At least your T score improved!

[pink9182 in reply to Aerobics-Instructor]

This condition is so confusing, frustrating, and scary. The doctors scare us about the fragility of the bones and the meds have so many scary side effects. We don't know what to do. I'm trying to live a normal life as I'm 59 but this is always in the back of my mind. I did try Boniva and Fosamax but both affected my stomach and back. Another doctor wants me to try Prolia but what do I do after I have to stop it and then try the pills that make me sick. I'm just scared to death about the horrible side effects. I never had a fracture and I exercise and try to watch what I eat. I'm happy with my last scan and I just hope my endocrinologist agrees with what I'm doing. Even if he doesn't agree, I think I'll continue for two more years and see what the next dexa shows.

[Aerobics-Instructor in reply to pink9182]

You may not want to add a bunch of supplements if you already have a very healthy diet (lots of dark green veggies, nuts, etc) as what you are doing now seems to be working. Once you start taking more and more supplements, you'll never know which one helped your scores, and it probably was just the Thiazides. Also, have your vitamin D levels checked, if you can. My mom was taking just 2000 IU a day and then found out her blood levels were too high.

[pink9182 in reply to Aerobics-Instructor]

You are absolutely right. I do eat a lot of dark green veggies, berries, bananas, nuts, and others. I asked my endocrinologist about Vitamin A and he said my levels are fine and too much vit A can actually be harmful. I also asked him about boron and he did not recommended as that's a metal and can also be harmful. My vitamin D levels are well too. I do take 5000 IUs of vitamin D because of the osteoporosis and it seems to be good for me. I saw my doctor last week and he was happy with my progress. I was praying my numbers wouldn't get worse because the meds do not agree with me so I was ecstatic when they actually improved. I will continue doing what I'm doing and hopefully the numbers will slowly improve. Thanks for your support!!

[TLT23 in reply to pink9182]

I agree with you 100% I'm always thinking of how I can get stronger bones without taking the medications recommended by doctors. They shouldn't be prescribed at all, in my opinion. It doesn't sound like anyone has actually reversed the bone loss yet!

[kdc06514 in reply to pink9182]

You could consider an infusion, like reclast

[Watercolorgirl in reply to Aerobics-Instructor]

Please be super careful. It's so easy to fracture at -3.2. My spine was at 3.2 also and just lifting something I broke it and then just getting out of a low chair twice broke it. Then 2 more compression fractures after that. 5 compression fractures total. With all the 5 inch height loss my hips are now at -3.7. Had to have 1 full hip replacement and now need another. I can barely walk and cant get out of my hospital bed by myself. My life is miserable all due to prednisone. If you get a break which I hope you don't get them to put you on tymlos. It reversed my osteoporosis to osteopenia but it was given to me too late. The destruction has already been done from prednisone use. Negligent Dr and big pharma. I'm a shell of who I was at age 57 now. I suffer greatly everyday. I'm very depressed and cry a lot. I was an athlete. Tennis golf and Mountain biking. Now i can barely do anything with set back after set back. I try to do Pt when I'm able but keep getting muscle pulls ECT. Its a never ending torturous cycle. Osteoporosis, the silent torturous disease.

[Aerobics-Instructor in reply to Watercolorgirl]

Wow- Thank you for the warning. I am so sorry to hear how devastating those spinal fractures have been for you! As someone who has always been active, I understand how terrible it must be to have to give up so many things. I know Prednisone has really bad effects on bone density, and other things, but I am surprised that you fractured so easily when your T was only -3.2. If my DEXA is worse in March, I will ask about Tymlos as I think it can help rebuild bone, not just slow the loss. I will pray for you.

[FearFracture in reply to Met00]

My 80 y.o. mother, who is taking alendronate for osteoporosis, just went in for a DEXA scan. The technician gave her a copy of the results when she was leaving, but the technician only did a scan of her lower spine and left hip. Frankly, I'm furious. what is the dang point. I told my mother she needs to go back and tell them they have to scan her right hip as well at their expense.

[pink9182 in reply to FearFracture]

Hi, hmmm... when I got mine they did my spine and only the left hip. I thought that was strange but didn't question it. I don't know why they only did one hip. I hope your mom is doing well with her meds. Thanks for your reply

[HeronNS in reply to pink9182]

They only did lumbar spine and hip (I forget which one) when I had scans. I believe this is standard practice unless there is a definite need for other. Some people have arms and smaller bones scanned as well, and I have no idea why. Although it's very low dose, radiation is involved.

[pink9182 in reply to HeronNS]

This is good information. Thanks for clarification.😊

[FearFracture in reply to pink9182]

Thanks. On the DEXA she had done yesterday, it shows that her lumbar spine and her total left femur are in the normal range or greater than -1. Her left femoral neck is -2.2 (osteopenic) but there are no comparison data from previous years.

Based on her lumbar and total femur comparison data, it looks like for a about 2 years she slipped slightly into osteopenia range and her doctor put her on alendronate. She's been taking it for approximately 3 years. I don't know what he will recommend during her next visit but personally I think she should take a holiday and another DEXA scan next year.

We both also have hypothyroidism too and we both take levothyroxine and recently her endocrinologist cut her dose from 125 mcg/day to 75 mcg/day, which I think caused other issues. Low thyroid hormone can cause depression like symptoms and if you need to cut the dose back, which can happen especially as one ages, I don't think you should cut it back so drastically all at once. He should have tapered her off the 125 mcg / day so she could adjust to the change.

I see the same endocrinologist that she sees and I'm currently looking for a new doctor for a variety of reasons (note, he did not consider my height, 4'11" when he prescribed osteo-meds and according to Dr. Ott's BMAD calculator courses.washington.edu/bone... my t-scores are better than the DEXA scans show, and I think someone treating osteoporosis should be aware that smaller people can have skewed DEXA results).

[HeronNS in reply to FearFracture]

As I indicated in reply to pink9182 I think this is standard practice.

[Met00 in reply to FearFracture]

I don't know about in the US, but in the UK you normally just have a scan of your left hip and L1-L4

[HeronNS in reply to Met00]

I'm in Canada and same for us.

[FearFracture in reply to Met00]

Mine have been of both.

[kdc06514 in reply to FearFracture]

They always do one hip. Presumably they have good reason to think they are similar and the machines are designed to do just one.

[JustSayNo]

Of course this is progress and of course what you’re doing is responsible for that. (IMO, of course!) Happy for you. 😊

[pink9182 in reply to JustSayNo]

Thanks so much for your support!!

[dcdream]

can you share the dosages of each of the supplements and collagen you are taking cause your results are good and I would like to try them. Also are you over age 68? Just curious if this helps on older folks versus younger?

[pink9182 in reply to dcdream]

Sure!! I just turned 60. I'm 5'3" 115 lbs. I'm not promoting any products, but I figured I could share the brands that I use.

1. Citracal Petites +D3 - 2 caplets daily. Vitamin D 12.5 mcg (500 IU), Calcium 400 mg.

2. Peak Performance Advanced D+K - 1 capsule daily. Vitamin D 125 mcg (5000 IU), Vitamin K 100 mcg, Vitamin K2 125 mcg.

3. Peak Performance 3 in 1 Advanced Magnesium serving size is 3 capsules but I only take 1 (3 were too much for my stomach). Magnesium 200mg but since I only take 1 capsule, 200/3=66.6 mg.

4. Truvani Marine Collagen Wild caught Unflavored - 1 scoop daily protein 11g, Collagen Peptides (Type I & III) 11.5g and Collagen Peptides Type II 500 mg.

I take these every morning with my breakfast. Please let me know if you have any other questions. Take care!!

[Pte82 in reply to pink9182]

pink9182, suggest adding 3 mg of boron to your protocal and watch Ryan Talor's youtube video titled #1 Mineral To BOOST Collagen.

[pink9182 in reply to Pte82]

Hi, I was going to add boron to my list of supplements but when I asked my endocrinologist how much I could safely take he did not recommend it. He said that's a metal and did not think I should take it. So I did not pursue it. I will watch the video you recommended. Thanks so much!!

[Pte82 in reply to pink9182]

Glad you will watch the video

[kdc06514 in reply to pink9182]

Minerals are metals essentially. Boron is a mineral and small doses seem to be good for bones. You do have to limit the dose to avoid problems.

[dcdream]

Thanks so much for the info. I already do everything as you without the truvani collagen, which interests me after reading your scores. I've had osteoporosis since age 58 and have not been on drugs for it. However, as it's gotten worse, my doctor is really pushing hard to take fosamax or reclast. Good luck with your scores and it will be interesting to see how it goes. I also work out daily, hike 6 days a week, pilates 2x per week, yoga 2 x per week, weights 3 times per week. My doctor feels I can't eat my way out of this nor work out of this by physical activity. Who knows.

[pink9182 in reply to dcdream]

My doctor worn me out two years ago and I took Boniva I had really bad side effects then I tried another med last year that I was supposed to take once a week and same side effects. That’s when I decided to try more natural options and the osteoporosis is improving so I’m going to continue with what I’m doing. I wish you the best.

[dcdream]

You're so fortunate to be able to turn this around. What side effects did you have? My doctor is telling me to do the once a week fosamax but is pushing reclast instead to avoid stomach issues.

[pink9182 in reply to dcdream]

With the Boniva (took two doses) and the Fosamax (took one dose) I got really bad heartburn and a backache for two weeks, even heartburn meds did not help. I know this is a lifelong commitment but I have to do what I feel its best for me. I hope science comes up with better drugs for Osteoporosis, the side effects of the current drugs are very scary to me.

[dcdream in reply to pink9182]

That's exactly what I've been thinking for 10 years since I was diagnosed with osteoporosis at age 58. The drug companies do not seem to have the interest to fund new drugs regardless of the side effects that make women apprehensive about taking said meds. I am reading research coming out of Asian countries and Europe that are looking for new drugs to treat osteoporosis. I continue to wait and hope. Thanks for the marine collagen info as I am taking everything else you mentioned already. Perhaps that may help me too.

[Watercolorgirl in reply to dcdream]

fosamax causes lots of side effects. Reclast is better. It is an infusion once a year.

[pink9182]

I hope it helps. I'm waiting for better meds and making my bones stronger with my supplements and exercises. I'll see in 2 years if things progressed a little more. Wish you the best!!

[FearFracture]

Here are my results after 1.5 yrs on alendronate (from Jan 2020 to July 2021 and 1 zoledronic acid infusion (had the infusion in November 2021):

GE Lunar DEXA results

July 2019 July 2021 December 2022

LUMBAR SPINE

L1 -4.5 -3.8 -4.1

L2 -4.3 -4.2 -4.2

L3 -3.7 -3.3 -3.5

L4 -3.4 -3.5 -2.9

Total L Spine -3.9 -3.7 -3.6

RIGHT HIP

Right Neck -2.7 -3.1 -2.9

Total Right Femur -3.0 -3.0 -2.8

LEFT HIP

Left Neck -3.3 -3.2 -3.1

Total Left Femur -3.4 -2.9 -3.0

In addition to the osteo-meds, I made a lot of changes to my diet and supplement and exercise program and I am considering not having another zoledronic acid infusion this year and instead trying to continue to improve my bones naturally. I'm also considering trying HRT.