A couple of weeks ago I got the results of my bone turnover marker tests and I am hoping there is someone on the platform that is familiar with these tests and who can help me decipher my results.
Yes, I did ask my endocrinologist for help with this but what he said makes no sense and he only mentioned my osteocalcin levels and he had nothing to say about the other tests.
For a little background, I took alendronate from Jan. 2020 to July 2021, stopped because of digestive tract issues, took a 4 month bisphosphonate holiday and had 1 zoledronic acid infusion in November 2021. My endocrinologist never mentioned having bone turnover marker tests or any tests to rule out secondary causes of osteoporosis prior to prescribing osteo-meds. He simply said my bones were "horrible" and that I needed to do something. Meds were his only solution. After having the zoledronic acid infusion in November 2021, I started doing more research and that is when I learned about the bone turnover marker tests and that they should be done prior to starting bisphosphonates and then again about 3 months after taking the meds to make sure the meds are having the desired effect.
I know that bisphosphonates stay in you for a long time. I did until exactly one year (to the day) of having had my zoledronic acid infusion to have the bone turnover marker tests but I don't know if, since the bisphosphonates stay with you a long time, if they can still effect bone turnover markers after a year.
The only thing my endocrinologist said about any of there results is that my Osteocalcin was low. It's my understanding that bisphosphonates lower your Osteocalcin levels or are supposed to. Also, I have Hashimoto's thyroiditis and after my appt with my endocrinologist when he said little to nothing my test results I re-read the bone turnover marker pdf that I have (it's one of the links under my bio for anyone who is interested) and it flat out say that hypothyroidism can cause osteocalcim to be lower.
Any advice, tips, insight you may have, please share.
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Your CTX scores are well within range. My CTX was 1.220 ug/L which is way out of range:
Premenopausal: <0.573 ng/mL
Postmenopausal: 0.104 - 1.008 ng/mL
And I have massive hypercalciuria, higher than anyone has ever seen. So goodie for me. I tried hydrochlorothiazide but my glucose (I'm diabetic) and my serum calcium kept climbing so I had to stop.
Had to look up hypercalciuria. Yikes. Hope you are doing well. My endocrinologist has never tested calcium in my urine--I've wondered about why he hasn't checked it but if anyone could see how he behaves to during my appts, they would understand why I don't get all of my questions answered/concerns addressed. I've tried finding a new endocrinologist but the woman I went to this fall was no better than my current endocrinologist--she told me she would follow up with me about where I could get a DEXA with TBS and, of course, she never got back to me. I don't have time to beg doctors and there staffs to do their jobs. I'm going to get another referral to the only other endocrinologist on my insurance and hopefully she will be better than the guy I am currently seeing.
During my appt with him last week, I went in with my laptop because I had created a spreadsheet of my t-scores for my three DEXAs--If you are interested in seeing my DEXA results they are posted here healthunlocked.com/boneheal... When I made the comment to my endocrinologist that the general trend was that my numbers were going up, he asked, "What numbers are you looking at?" I said my T-scores. Then he said, "The numbers they are compared to change every year." He got me totally confused and by the time I left his office I was thinking how could I and all of the people on HealthUnlocked have this wrong. Then I realized he was referring to Z scores. Who the HELL cares about Z scores and why didn't he ask to see what I was looking at and further more, if he and his freaking office staff would bother to do their jobs and get copies of my full DEXA reports rather than just looking at the waste of time radiologist reports, he could see exactly what I was talking about--he could even have asked to see my spreadsheet but instead, 3 times during the appointment he shoved his computer back so it would hit mine.
Wow, your doctor sounds like alot of my doctors. In addition to them not doing their jobs properly, they are over worked here and are booting patients out of their practices because they have too many. I have no idea where this world is headed but I pity the younger generations and what they have to look forward to.
I say this all the time, anyone who is not trying to stay healthy is a fool. To my knowledge, I didn't do anything to cause my early menopause and given that all my siblings and my mother have Hashimoto's hypothyroidism, it's gotta be genetic. My endocrinologist tried to "blame" my osteoporosis partially on what I ate as a kid, but my sister doesn't have osteoporosis and she is a few years older and our mother fed us the same meals which included a glass of milk. Additionally, my weight has always been within the BMI range for my height and I don't smoke, do drugs, and I rarely drink.
I think I am going to sign up for a Teladoc session and see if I can't find someone to help me interpret the data.
Good luck, I hope you find someone better than what you have now. I have hashimoto's as well, so I have a boat load of endocrine problems. It seems once one thing goes wrong with the endocrine system, it causes a chain reaction for more endocrine/metabolic disorders. My doctors say it's very common to have more than one....
I’m slowly realizing that. I gave up gluten a while back because I have NCGS (non-Celiac gluten sensitivity) and by giving up gluten, I essentially eliminated lots of not good stuff from my diet. I also cut back on added sugars—there are many days, today being one, when I don’t have any added sugars in my diet. Because of this, for the last couple of yrs I’ve been telling ppl there is no way I can get diabetes. Two months ago my PCP ordered some bloodwork and my A1c came back at 5.6.
The normal range is 4.8 to 5.6.
Pre-diabetes range is 5.7 to 6.4
Above 6.4 is diabetes.
I was shocked that my A1c was .1 away from pre-diabetes so I started doing research. Turns out Hashimoto’s is linked to diabetes. It’s all annoying but I’m also aggravated that my endocrinologist doesn’t mention any of this. LOL—while typing this a Rybelsus commercial came on.
I have been controlling type 2 with diet and exercise for 20 years now. When I started my diet my HBA1C was around 5.2. Now my HBA1C is 5.6 to 5.7, slowly creeping up. I do not eat sugar and I don't eat grains or legumes as I can't handle the carbs. I do eat potatoes once in a while as they contain alot of potassium which helps your body create insulin. A good percentage of people with hashimotos end up with Type 2 diabetes. Be careful with your grain substitutes. Rice is used in alot of them and it is pure sugar to the body.
A few yrs ago, I was regularly eating gluten free foods that were made w/ wheat substitutes—but I severely cut back on those and occasionally when I really have the urge for something that resembles bread I aim for Keto products which are made with almond flour.
I’ve read that cinnamon helps so I sprinkle cinnamon on bananas and apples and oatmeal and I also read that apple cider vinegar can help lower A1c. I used to drink a cup of warm water with apple cider vinegar so I might start doing that again.
Do you avoid eating fruit? I’ve always been a big believer that natural sugars are ok to eat, but Dr. Teri Wahls, who pretty much halted/reversed her MS with a paleo-keto type diet (The Wahls Protocol) pretty much emphasizes greens, sulfur vegetables, and meat, especially organ meats—I tried adding liver to my diet but I just can’t do it. I looked up recipes for ppl who don’t like liver, and they say if you cover it in lemon juice for a while before cooking it gets rid of some of the iron-flavor, and makes it more palatable—then i f course you pan fry it with bacon and onions to cover up the flavor. LOL. Bacon is 100% ok on a Keto diet. Another suggestion I found for ppl who don’t like liver but want to eat it is to cut into tiny pieces and freeze it and then just swallow a few pieces of frozen liver—hilarious and it might work but I’m not going to start that at least not yet.
I eat berries (strawberries, blueberries, raspberries and blackberries). That's good that you are not eating the rice substitutes. If I eat rice my glucose stays up for hours, it is the worst thing for me. My diet is pretty limited: any kind of veggie, meat, poultry, fish, cheese, soy milk, sometimes potatoes. I also eat edamame pasta - it's low carb - tastes a bit weird until you get used to it. But I do tend to fall of the wagon and then watch out, I eat EVERYTHING. And I always binge at Christmas.
Because I’m not diabetic, I don’t test my blood sugar levels at home. After reading a few books on bone health, I accepted the philosophy that unless there is a reason to not fast before bloodwork, that all bloodwork should be done fasting—the theory is it gives a much clearer picture.
When my labs come back, my blood sugar levels are always within the normal range, but what surprised me is that they still hover closer to the high end of the normal range even when I’m fasting. However, since they are in the normal range my endocrinologist never mentions anything about my glucose levels.
When my PCP did my A1c test in October 2022, I was shocked it came back at 5.6, given that my glucose levels are never out of range.
Dr. Terry Wahls (the Wahls Protocol) is in favor of monitoring blood sugar levels even for those who aren’t diabetic or pre-diabetic. There are many health gurus who think blood sugar spikes are horrible for everyone, no matter how healthy a person is.
I have not looked into it enough but if it is feasible, at some point, I might try to learn more and start monitoring at home just to try to keep things under control—the problem with trying to stay healthy is that it is so time consuming and the costs can add up.
Gluten-free products, meaning products made w/ wheat substitutes, are often 2 to 4 times the price of products made with wheat, so you save money by just eliminating those foods from your diet. I pretty much cut out coffee and diet colas to help my bones so that was a savings. In 2022, I think at most I’ve had 12 oz of a caffeine diet beverage and in January of 2022, I gradually switched my 1/2 caf coffee to full decaf and then gave it up altogether. I was coffee free (except on long road trips, when I need the jolt) for about 6 months and have decided that a little 1/2 caf and decaf won’t hurt so I’m back to drinking about one 1/2 caf a day, but my 8 oz coffees contain approximately 1/4 cup 1% milk so I figure the negative effects of the little bit of caffeine I’m getting are offset by the milk. Also coffee is the #1 source of antioxidants so, unlike colas, it does offer some health benefits.
I bought a glucometer way before my doctor diagnosed me with diabetes. I have managed to keep my fasting glucose in the low 5's. When pre-diabetic your post meal glucose is what you need to watch. You are likely spiking after eating. Once your fasting glucose goes south diabetes gets very hard to treat. Keep your fasting glucose low for as long as you can with diet and exercise.
@Cwbsi my highest urine calcium was 12.91 mmol with a reference range of 2.50-7.50 mmol/day. I'm 5'3" and small boned, that is a huge amount of calcium leaving my body everyday.
My endocrinologist never ordered that test so I have no idea—again, I’m not thrilled with him. I “tried” a different endocrinologist in October. My insurance doesn’t require referrals to see a specialist, but endocrinologists in my area won’t accept new patients w/o a referral—between requesting the referral, actually getting the referral, and then getting an appt, it took me about 6 months to get in to see her. Unfortunately, she didn’t seem any better than my current endocrinologist so I don’t plan to go back to her. Without really looking at my 2019 and 2021 DEXA reports, she said my current endocrinologist made the right decision prescribing bisphosphonates. Additionally, when I told her I was considering not having another infusion this year, she said there is no research to back up that that would work. Neither she nor my current endocrinologist could tell me where I could get a DEXA w/ TBS—how can any doctor claim to treat osteoporosis and during all the years they were supposedly treating osteoporosis never have considered sending someone for a DEXA w/ TBS. She did say that she would get back to me with the name of an imaging facility that can do a DEXA w/ TBS and, of course, she never did. When I ask her about the 24-hour urine calcium test she said it’s no longer considered necessary or useful—Dr. Brown of BetterBones.com still has it listed as a test she recommends having done and when I took an older relative to see an endocrinologist (in another city) in March 2022, he made her do the 24-hour urine calcium test.
I can tell my current/original endocrinologist that I want it done and he will order it. What do you think? And if you recommend that I have the 24-hour urine calcium test done, what do I have to do to prepare—meaning do I have to avoid calcium supplements while doing it or anything like that.
I would definitely ask for a 24 hour urine test. I just eat what I normally eat, but I have read some people who have taken the test are told not to take supplements. My doctor said calcium is calcium no matter what the source, but I'm wondering if she is right about that. I would discontinue your supplements for a few days before and during the test.
I believe 24-hour urine calcium test is standard for the initial osteoporosis workup in the US. Well, it might be different for women, but it's one of the tests they run for men to figure out the cause.
The endocrinologist I see annually at a local academic medical center orders a 24 hour urine calcium, sodium & creatinine test each year, along with blood tests for CTX (resorption )& P1NP (formation) bone turnover markers, Vit D, magnesium, phosphorus, intact PTH (parathyroid hormone), CMP (metabolic panel to check electrolytes, renal & hepatic function). Best to consume normal calcium intake while doing 24 hour calcium urine for most accurate results. The urine sodium is to check if your normal diet has excess of sodium - too much sodium can affect calcium absorption/cause loss of calcium in urine. Urine creatinine measurement shows if 24 hour urine collection is complete/in normal range. These 3 urine tests are done on one 24 hour collection of urine (collected in a “hat” and poured in jug each void, stored in frig until returned to lab). As far as blood tests, I always do fasting 12 hours, at same lab, roughly same time of morning - so that I can control what variables I can. CTX needs to be drawn no later than 10am (8-10am) as levels tend to go lower later in the day. Also, for PTH (and any other thyroid tests & Vit. D), it is recommended to hold any biotin supplements (or other supplements containing biotin) for at least 3 days before labs are drawn as some labs use tests that biotin can interfere with and skew results high or low. My endocrinologist advises to hold biotin for 5 days (I hold 7 days to be on safe side as my B vitamin comtains 10x RDA for biotin).
I have quite a bit of medical training. I frequently wonder how people navigate the medical system and all the docs who are epic failures. When I hear the stories about poor communication. FIRE THAT DOC, and move on to another and another. Get 2, 3, and 4 opinions. One year my pcp was so awful with no better options around. I saw 5 specialist and my concerns were vindicated all 5 times. Keep looking view ratings and reviews. Trust yourself. If communication is bad, move on. Fortunately, I now have a full team of docs that are rock stars.
My son in law and 2 coworkers are diabetics. It’s not just about not eating sugar. You must give up bad carbs because they have starch which turns to sugar. Learn about good and bad carbs . Eat under 60 good carbs a day. Do a search on “ what foods should a pre diabetic eat and avoid. I know you must give up white rice , potato’s, white breads , oranges and orange juice . You might also want to talk to a nutritionalist as they can help and explain foods and carbs . You may st read food labels and see how many carbs are in the food and fiber. You subtract the fiber from the total number of carbs . The number you’re left with is the carb count you want to know because you add that number to the rest of what you’re eating and do the same carb count on those. You do not want the total of all to be over 60 for each meal.
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