Thank you for your reply. I have talked with Dr. McCormick twice. I do have his book and have read it. I did do the tests correctly in terms of timing, fasting and no supplements. I also do see a doctor at Mayo Clinic since last November. I did have an endocrinologist locally that was knowledgeable. I also have been using the Exogen bone stimulator. I keep wondering if there is some other underlying cause to the low bone turnover. I was recently prescribed Tymlos but I am not sure I really want to start another med. I have taken this in 2018 for 15 months and then again from August 2022 through February 2023 when I switched to Evenity for 5 months which I discontinued due to side effects. I have taken HRT since 2018 when I hit menopause. If it is not too personal, I am curious about the genetic and metabolic issues that you have faced. I also discovered I have MGUS in 2023 because of some bloodwork I had done looking for any autoimmune disease. Thank you for your help and I certainly wish you a healthy and pain free future.
Dear Lisanne,
My symptoms and history showed evdicnce of HPP ( hypophospatasia) which has similar charaterististc to other genetic connective tissue defects; therefore I took a genetic test coverign many general sketetal dysplasias. I have clinical indications of conncetive tissue disorder and HPP but genetic tests ( which have some limitations) indicated a different disorder - of unknown significance. I have a history of nutritinal defeciencies and high homocysteine. Homosycteine is correlated with increased risk of fracture and I have fratured many bones in my adult life - so tha t is part of my story and its rebalance is part of my healing. We all need to find out what is out of balance and correct it so the body can heal. After my original diagnosis, i dscovered I had high vit D, high urine cal and had been drinking bad water ( water softener water chemicals were causing havoc in my system - I had to start drinking spring water) had to balance these issues - it is a process for me and I pray Im getting to the point where I am regaining and beginning to build. I am concerned about the meds that must follow Tymlos - but I feel I can sort through and make the best possible choice for the best outcome. I pray you too find good guidance and path to recovery.
Dear Lisanne,
My symptoms and history showed evdicnce of HPP ( hypophospatasia) which has similar charaterististc to other genetic connective tissue defects; therefore I took a genetic test coverign many general sketetal dysplasias. I have clinical indications of conncetive tissue disorder and HPP but genetic tests ( which have some limitations) indicated a different disorder - of unknown significance. I have a history of nutritinal defeciencies and high homocysteine. Homosycteine is correlated with increased risk of fracture and I have fratured many bones in my adult life - so tha t is part of my story and its rebalance is part of my healing. We all need to find out what is out of balance and correct it so the body can heal. After my original diagnosis, i dscovered I had high vit D, high urine cal and had been drinking bad water ( water softener water chemicals were causing havoc in my system - I had to start drinking spring water) had to balance these issues - it is a process for me and I pray Im getting to the point where I am regaining and beginning to build. I am concerned about the meds that must follow Tymlos - but I feel I can sort through and make the best possible choice for the best outcome. I pray you too find good guidance and path to recovery.
I was worried about HPP when I started to research recurrent slow to heal metatarsal fractures. I do have low ALP but my B6 and PEA were normal. They would not give me the genetic test. I am so sorry for all of your fractures. I do hope that you are on your way to finding the best treatment for the long term. How will you decide what to take next?
I was worried about HPP when I started to research recurrent slow to heal metatarsal fractures. I do have low ALP but my B6 and PEA were normal. They would not give me the genetic test. I am so sorry for all of your fractures. I do hope that you are on your way to finding the best treatment for the long term. How will you decide what to take next?
Dear Lisanne
My docs wanted to check both ALP and Bone SPecific ALP ( BSAP) YOu may want to consider having BSAP done. You say you have low ALP - so maybe BSAP is also defeicent. That may help you figure out what happening.
Meanwhile to have the genetic test, per my understadning, there must be enough criteria to suspect HPP. Although recurrent foot fratures are a major criteria - I believe there must be more. MY sister also has recurrent foot fractures and we both have teeth problems. ALso remember gentic tests are sometimes linited too - medicine and knowledge is grwoing in this field and new information is beign learned each day. I do not have a clear path forward after tymlos yet --- will continue to check bone markers and talk to as m any people on my team as possible... ANd pray!! Sneidng my best thoughts and prayers to you too.
Dear Lisanne
My docs wanted to check both ALP and Bone SPecific ALP ( BSAP) YOu may want to consider having BSAP done. You say you have low ALP - so maybe BSAP is also defeicent. That may help you figure out what happening.
Meanwhile to have the genetic test, per my understadning, there must be enough criteria to suspect HPP. Although recurrent foot fratures are a major criteria - I believe there must be more. MY sister also has recurrent foot fractures and we both have teeth problems. ALso remember gentic tests are sometimes linited too - medicine and knowledge is grwoing in this field and new information is beign learned each day. I do not have a clear path forward after tymlos yet --- will continue to check bone markers and talk to as m any people on my team as possible... ANd pray!! Sneidng my best thoughts and prayers to you too.
I will ask about BSAP. Does your sister also have HPP? I am glad you have a team that you can consult with about your case. I agree medicine is always moving forward with new and better information. Sometimes it is hard to get the correct information and we cannot always rely on our physician for the optimal answers. Sending you prayers and happy thoughts as well! Thank you for answering my questions.
Dear Lisanne,
I do not know if my sister has HPP. She does not have OP. HPP is independent of OP but is worse when OP is present. However, There is a genetic connective disorder condition in our family. How that effects OP is unknown.
Everyone has varitions in genes of unknown significance - so it is not always an easy way to find answers.
Get the best help you can - and nourish yourself as best is proper for your body type. There is not one answer in this complex disease; there are many causes and there is hope. Sending postitive thoughts and prayers.
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Dear Lisanne,
My symptoms and history showed evdicnce of HPP ( hypophospatasia) which has similar charaterististc to other genetic connective tissue defects; therefore I took a genetic test coverign many general sketetal dysplasias. I have clinical indications of conncetive tissue disorder and HPP but genetic tests ( which have some limitations) indicated a different disorder - of unknown significance. I have a history of nutritinal defeciencies and high homocysteine. Homosycteine is correlated with increased risk of fracture and I have fratured many bones in my adult life - so tha t is part of my story and its rebalance is part of my healing. We all need to find out what is out of balance and correct it so the body can heal. After my original diagnosis, i dscovered I had high vit D, high urine cal and had been drinking bad water ( water softener water chemicals were causing havoc in my system - I had to start drinking spring water) had to balance these issues - it is a process for me and I pray Im getting to the point where I am regaining and beginning to build. I am concerned about the meds that must follow Tymlos - but I feel I can sort through and make the best possible choice for the best outcome. I pray you too find good guidance and path to recovery.
YOu will find insight in below article.
We are all different and the proportion of CTX to P1NP is also very important ( resortion/formation ).
If you are on medicne - then btm will also be influenced. SO there is not one clear answer.
https://food4healthybones.com/wp-content/uploads/2022/10/The-Importance-Of-Bone-Markers-With-Dr.-Keith-McCormick.pdf
I was worried about HPP when I started to research recurrent slow to heal metatarsal fractures. I do have low ALP but my B6 and PEA were normal. They would not give me the genetic test. I am so sorry for all of your fractures. I do hope that you are on your way to finding the best treatment for the long term. How will you decide what to take next?
Dear Lisanne
My docs wanted to check both ALP and Bone SPecific ALP ( BSAP) YOu may want to consider having BSAP done. You say you have low ALP - so maybe BSAP is also defeicent. That may help you figure out what happening.
Meanwhile to have the genetic test, per my understadning, there must be enough criteria to suspect HPP. Although recurrent foot fratures are a major criteria - I believe there must be more. MY sister also has recurrent foot fractures and we both have teeth problems. ALso remember gentic tests are sometimes linited too - medicine and knowledge is grwoing in this field and new information is beign learned each day. I do not have a clear path forward after tymlos yet --- will continue to check bone markers and talk to as m any people on my team as possible... ANd pray!! Sneidng my best thoughts and prayers to you too.
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2 ReactionsI will ask about BSAP. Does your sister also have HPP? I am glad you have a team that you can consult with about your case. I agree medicine is always moving forward with new and better information. Sometimes it is hard to get the correct information and we cannot always rely on our physician for the optimal answers. Sending you prayers and happy thoughts as well! Thank you for answering my questions.
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1 ReactionDear Lisanne,
I do not know if my sister has HPP. She does not have OP. HPP is independent of OP but is worse when OP is present. However, There is a genetic connective disorder condition in our family. How that effects OP is unknown.
Everyone has varitions in genes of unknown significance - so it is not always an easy way to find answers.
Get the best help you can - and nourish yourself as best is proper for your body type. There is not one answer in this complex disease; there are many causes and there is hope. Sending postitive thoughts and prayers.
Did anyone answer this?
I'm 70 and my first one was 390 early 2024 and Oct 2025 now 340. I'll ask the Dr but the appointment is not right away.