I learned the hard way when iron deficiency went undiagnosed because my hemoglobin was just above normal- sad to say it, but luckily I became anemic and that’s when I hit the research hard. Not once did a doctor order a ferritin even though I was high risk as a runner and heavy periods. I’m also a dietitian but that training also falls short. Now I can read labs and often just order my own. Thanks for all you do. This is an amazing piece!
My 16 yo daughter has an iron deficiency too. She had a fibroid in her uterus and then suddenly it disappeared. I fear our doctor is not a great diagnostician.
About 9 years ago I stopped taking statins and BP medicine. They were doing nothing. I was not overweight, exercising all the time, climbing hiking skiing but my bp and cholesterol were in the wrong place and staying there. I felt like crap and the last straw was skiing with my son and at the bottom of a tough run, his body had a hallucination halo around it. I changed my diet, started reading everything I could. My BP started to go down (still 145/85 but that is lower than before) after I read about and started taking capsaican. (There were some other changes I made but it feels like that was the main one). I have just become a subscriber because of the blood test information that you provided and this posting. "You shouldn't trust me". When someone in your position says this, the trust begins. Thank you.
I have someone I trust, more than anyone. He is a Biochemist and he also lost his daughter. I read and research a lot but always find my way back to him. So far, so good.
I have also learnt to advocate for myself and follow a metabolic approach to run alongside hospital intervention.
Of course, it’s Chris Woollams who started up the UK website CANCERactive. Chris is in his mid 70s and now lives in Thailand. I had a very long online session with him and he sent me some very detailed information, including signposting me to relevant parts of the website and papers. He also sent me a suggested protocol to follow. I was already doing about 75% of this from earlier research. Chris is genuine, extremely knowledgeable and has an Oxford Degree in biochemistry, specialising in. cancer.
I’ve have a wonderful primary care doctor who refuses to stick to 15 minutes. He refuses to be controlled by the “system”. Best doctor I’ve had as an adult. I’m 77 years old. . He has explained things to me like you do. Unfortunately he is moving out of state to follow his spouse. I’ve learned to ask questions. Thank you for more questions I can ask whenever I see the doctor who replaces him. Or go searching again for one who will listen.
Having a front-row seat to the disease management system taught me that medication and treatment plans are only part of the story. Lasting health often comes down to habits, mindset, and support. That realization inspired me to become a Duke Certified Health & Well-Being Coach. People know what to do they just don't know how to do it. I wanted to play a role in helping people build the habits, confidence and resilience needed to improve their health, prevent illness, and thrive.
Here is an example. My oncologists were so worried about my white blood count. Wbc was 2.7 to 3.5 almost always. Every 3 weeks for years now. Since my diet change. Prior to my diet change it was higher like 4.1 to 5. For 3 years now it has been lower. They wanted to do a bone marrow test. I said no thanks. I held off , I dug deep and....I remembered when I had an acute non cancer related issue and my wbc went to 6. From 2.8 a week prior. Clearly my wbc CAN respond and did. Doctors rarely look(they dont have time or the training) on how different factors can effect numbers
About two years ago I woke up,with sharp abdominal pain, the kind where you scream. Next day I,went to the prompt care, which is run by the octopus health organization that wants to own it all. The attending nurse said, almost directly, “Why did you come here? We can’t do anything” and sent me to ER. Few hours later I was in an exam room, the physician drew blood, ran labs, and had me look at them on my phone while he told me there wasn’t much to see but to run it past my primary, which I did and like always, unsuccessfully.
I could go,on about what’s going on with care, but by now it’s not that uncommon, more like,the norm. Ingres up in a time family doctors made house calls with that little black bag. I maintain no illusions, but what we face now is the exact opposite. This will not be news to many.
I agree with the “never trust anyone” mindset in the sense that we should all do our own research and advocate for ourselves. That approach has helped me more than once, and I continue to use it to track my own progress and changes. Thanks for sharing. You took the words right out of my mouth. 😊
Yes you learn easier as a patient and many clinicians until they become patients themselves never learn this so they continue to think everything is working well and that is so far from the truth
learned a lot about integrative approach from Robert Goldstein a vet who I found doing research for my German Shepherd dog who had undiagnosed hypothyroidism. He wrote a homemade diet and used homeopathic supplements. He always wanted blood work before an appointment and that’s where I learned to look for optimal numbers as he wanted her to be in the middle range not on either end. He told me I had worked a miracle with her as I was consistent and followed his plan starting with 20 oz a day of organic boiled chicken breasts.
Later I had a crown replaced by a new to me dentist which got infected right away. At the time of crown replacement I felt like he didn’t sterilize area right before putting crown on. I noticed, as original dentist who put crown on did that step and I remembered him telling me. New dentist put me on 2 weeks of amoxicillin which took the swelling down only to reappear because he didn’t address the cause so he gave me two more weeks of amoxicillin and then told me I needed to go have gum surgery, which I had to go out of town for and did and then had another week of amoxicillin. After that, I had major diarrhea and over many months lost 30 pounds down to 90 lbs. When I tried to ask him any question, he immediately tried to shut me down and became really angry. So I never went back to him.
After several doctors including gastroenterologist and having a colonoscopy, I was just told to eat more fiber. It’s a long story and it took years of physical therapy and when I saw the head of the digestive department at Stanford I learned about celiac. That was in 2012. All my doctor could see was terrible terrible diseases. When I asked to see a nutritionist, she said there wasn’t really one only a dietitian at the hospital who worked with people who had diabetes. At some point when I was so thin that all my ribs were showing front and back. I told her I want you to see what my body looks like. Doctors didn’t know anything about nutrition. To me that’s like having a car and not knowing how to check the oil or put gas in it. Nutrition is our fuel for the body and mind.
So everything I eat from 2012 has been made from scratch following the specific carbohydrate diet following Elaine Gottschall, a biochemist, “Breaking the Vicious Cycle” book that has wonderful recipes along with the science of what is happening. Her daughter was sick and she went back to school to get PHD and do the work. I have 8 SCD cookbooks and her diet is followed world wide.
So I realized that I have to rely on myself to find the right information and follow Elaine’s book. Ten years later when I saw my original doctor at the gym when I was working out, she told me I healed myself. I had muscles and weighed 123 lbs. Though I have had to be aware daily and each meal of what & when I’m eating and the supplements I’m taking.
In the last year, though I have lost 28 pounds and though I’m in better shape physically because of using my weights, and exercise I don’t have a gallbladder which makes it difficult to digest fats and your body needs good fats. Again in the medical field my FNP doesn’t have any idea what to check. I’ve asked for a full thyroid panel because of tiredness at times and the vet used to want to do T4 and free T4 and T3 to check Lupa’s thyroid. The FNP that I am seeing says I don’t need it because my TSH is normal. I am going to be 78 this year. I don’t feel sick and am working hard using AI to help me with my SCD diet and also Pancreatic Enzymes along with ox bile.
In 2022 for 5 months I was the best I’ve been and for the first time in 10 years I didn’t have to take any Pancreatic Enzymes. I was eating 6 kinds of nuts & nut butter which are fats and health cookies that I made, lots of different organic berries. I don’t use sugar. I use organic wild honey to bake with. Blueberry muffins with almond flour. No additives, pure food. Then I had changed doctors and she went from a private practice to a corporate practice and everything changed. I became very stressed from the way she was treating me. I couldn’t believe the trust I had put in her and after several visits I said, that’s it, can’t go back to her. I live in a very small town so not a lot of doctors and I have some prescriptions.
What's compelling is that info alone rarely tells the story. Healthcare is longitudinal, and the meaning often emerges through context and trends over time rather than any single result. Technology should help clinicians see that story more clearly, not simply pile on data.
I agree completely. That's where I think AI can have its greatest impact, not making the decision, but returning attention and by revealing patterns that support better clinical judgment.
I visited my doctor recently with a list of labs in hand. He rejected running many of them, including a full thyroid panel...and I have a history of Hashimoto's! Several numbers were abnormal, so at my followup, I expect to be told that I'm eligible for additional labs. Frustrating, but I looked at the labs I did get as the first domino getting pushed over. It gave me the needed incentive to follow an eating plan that's worked well in the past (AIP).
Thank you for being another source of support in my journey back to health, Dagmara!
I agree, but as a state-paid caregiver, the insurance is $25/month, and I plan to get what I can out of them for free, and THEN I'll get a better partner! An interesting tidbit...10 years ago, just after I was diagnosed, I met a Chiropractor who does CRS (Contact Reflex Analysis), and she set me on a totally different path with her testing. She said my thyroid was strong and healthy, but my liver was struggling to keep up. I changed my diet and took targeted supplementation, and my entire health picture changed...lost 40lbs in 18 months, TSH went to normal low levels, ultrasound showed a normal thyroid. My plan is to get myself back in the same saddle, and see if the same plan will work twice! I got sloppy in the middle years, eating pretty much anything I wanted. So...back to a structured plan I go!!
First of all, I’m so sorry for the loss of your precious daughter. And deep gratitude to you for all the ways you share your wisdom and heart with the world. You’re validating my experience of how difficult it can be to get additional labs ordered—and how important it is to approach lab testing by seeing and treating the human being as a whole person, rather than as a collection of individual body parts. ❤️🩹🌟💫
I learned the hard way when iron deficiency went undiagnosed because my hemoglobin was just above normal- sad to say it, but luckily I became anemic and that’s when I hit the research hard. Not once did a doctor order a ferritin even though I was high risk as a runner and heavy periods. I’m also a dietitian but that training also falls short. Now I can read labs and often just order my own. Thanks for all you do. This is an amazing piece!
My 16 yo daughter has an iron deficiency too. She had a fibroid in her uterus and then suddenly it disappeared. I fear our doctor is not a great diagnostician.
Sorry to hear that.
About 9 years ago I stopped taking statins and BP medicine. They were doing nothing. I was not overweight, exercising all the time, climbing hiking skiing but my bp and cholesterol were in the wrong place and staying there. I felt like crap and the last straw was skiing with my son and at the bottom of a tough run, his body had a hallucination halo around it. I changed my diet, started reading everything I could. My BP started to go down (still 145/85 but that is lower than before) after I read about and started taking capsaican. (There were some other changes I made but it feels like that was the main one). I have just become a subscriber because of the blood test information that you provided and this posting. "You shouldn't trust me". When someone in your position says this, the trust begins. Thank you.
I should also say, I am 75.
I am so sorry to hear about your daughter.
I have someone I trust, more than anyone. He is a Biochemist and he also lost his daughter. I read and research a lot but always find my way back to him. So far, so good.
I have also learnt to advocate for myself and follow a metabolic approach to run alongside hospital intervention.
Melanie, is this biochemist one you can name? He sounds like someone who'd be on the same page as Dagmara!
Of course, it’s Chris Woollams who started up the UK website CANCERactive. Chris is in his mid 70s and now lives in Thailand. I had a very long online session with him and he sent me some very detailed information, including signposting me to relevant parts of the website and papers. He also sent me a suggested protocol to follow. I was already doing about 75% of this from earlier research. Chris is genuine, extremely knowledgeable and has an Oxford Degree in biochemistry, specialising in. cancer.
Thank you! I'll look him up.
I’m so sorry about the loss of your daughter.
I’ve have a wonderful primary care doctor who refuses to stick to 15 minutes. He refuses to be controlled by the “system”. Best doctor I’ve had as an adult. I’m 77 years old. . He has explained things to me like you do. Unfortunately he is moving out of state to follow his spouse. I’ve learned to ask questions. Thank you for more questions I can ask whenever I see the doctor who replaces him. Or go searching again for one who will listen.
Having a front-row seat to the disease management system taught me that medication and treatment plans are only part of the story. Lasting health often comes down to habits, mindset, and support. That realization inspired me to become a Duke Certified Health & Well-Being Coach. People know what to do they just don't know how to do it. I wanted to play a role in helping people build the habits, confidence and resilience needed to improve their health, prevent illness, and thrive.
Here is an example. My oncologists were so worried about my white blood count. Wbc was 2.7 to 3.5 almost always. Every 3 weeks for years now. Since my diet change. Prior to my diet change it was higher like 4.1 to 5. For 3 years now it has been lower. They wanted to do a bone marrow test. I said no thanks. I held off , I dug deep and....I remembered when I had an acute non cancer related issue and my wbc went to 6. From 2.8 a week prior. Clearly my wbc CAN respond and did. Doctors rarely look(they dont have time or the training) on how different factors can effect numbers
About two years ago I woke up,with sharp abdominal pain, the kind where you scream. Next day I,went to the prompt care, which is run by the octopus health organization that wants to own it all. The attending nurse said, almost directly, “Why did you come here? We can’t do anything” and sent me to ER. Few hours later I was in an exam room, the physician drew blood, ran labs, and had me look at them on my phone while he told me there wasn’t much to see but to run it past my primary, which I did and like always, unsuccessfully.
I could go,on about what’s going on with care, but by now it’s not that uncommon, more like,the norm. Ingres up in a time family doctors made house calls with that little black bag. I maintain no illusions, but what we face now is the exact opposite. This will not be news to many.
To be honest, these days you can't believe anything anymore.....but if someone talks and makes sense then I listen...
I agree with the “never trust anyone” mindset in the sense that we should all do our own research and advocate for ourselves. That approach has helped me more than once, and I continue to use it to track my own progress and changes. Thanks for sharing. You took the words right out of my mouth. 😊
Yes you learn easier as a patient and many clinicians until they become patients themselves never learn this so they continue to think everything is working well and that is so far from the truth
Q: Sadly, What's the difference between God and a Doctor?
A: God doesn't think he / she is a Doctor!
learned a lot about integrative approach from Robert Goldstein a vet who I found doing research for my German Shepherd dog who had undiagnosed hypothyroidism. He wrote a homemade diet and used homeopathic supplements. He always wanted blood work before an appointment and that’s where I learned to look for optimal numbers as he wanted her to be in the middle range not on either end. He told me I had worked a miracle with her as I was consistent and followed his plan starting with 20 oz a day of organic boiled chicken breasts.
Later I had a crown replaced by a new to me dentist which got infected right away. At the time of crown replacement I felt like he didn’t sterilize area right before putting crown on. I noticed, as original dentist who put crown on did that step and I remembered him telling me. New dentist put me on 2 weeks of amoxicillin which took the swelling down only to reappear because he didn’t address the cause so he gave me two more weeks of amoxicillin and then told me I needed to go have gum surgery, which I had to go out of town for and did and then had another week of amoxicillin. After that, I had major diarrhea and over many months lost 30 pounds down to 90 lbs. When I tried to ask him any question, he immediately tried to shut me down and became really angry. So I never went back to him.
After several doctors including gastroenterologist and having a colonoscopy, I was just told to eat more fiber. It’s a long story and it took years of physical therapy and when I saw the head of the digestive department at Stanford I learned about celiac. That was in 2012. All my doctor could see was terrible terrible diseases. When I asked to see a nutritionist, she said there wasn’t really one only a dietitian at the hospital who worked with people who had diabetes. At some point when I was so thin that all my ribs were showing front and back. I told her I want you to see what my body looks like. Doctors didn’t know anything about nutrition. To me that’s like having a car and not knowing how to check the oil or put gas in it. Nutrition is our fuel for the body and mind.
So everything I eat from 2012 has been made from scratch following the specific carbohydrate diet following Elaine Gottschall, a biochemist, “Breaking the Vicious Cycle” book that has wonderful recipes along with the science of what is happening. Her daughter was sick and she went back to school to get PHD and do the work. I have 8 SCD cookbooks and her diet is followed world wide.
So I realized that I have to rely on myself to find the right information and follow Elaine’s book. Ten years later when I saw my original doctor at the gym when I was working out, she told me I healed myself. I had muscles and weighed 123 lbs. Though I have had to be aware daily and each meal of what & when I’m eating and the supplements I’m taking.
In the last year, though I have lost 28 pounds and though I’m in better shape physically because of using my weights, and exercise I don’t have a gallbladder which makes it difficult to digest fats and your body needs good fats. Again in the medical field my FNP doesn’t have any idea what to check. I’ve asked for a full thyroid panel because of tiredness at times and the vet used to want to do T4 and free T4 and T3 to check Lupa’s thyroid. The FNP that I am seeing says I don’t need it because my TSH is normal. I am going to be 78 this year. I don’t feel sick and am working hard using AI to help me with my SCD diet and also Pancreatic Enzymes along with ox bile.
In 2022 for 5 months I was the best I’ve been and for the first time in 10 years I didn’t have to take any Pancreatic Enzymes. I was eating 6 kinds of nuts & nut butter which are fats and health cookies that I made, lots of different organic berries. I don’t use sugar. I use organic wild honey to bake with. Blueberry muffins with almond flour. No additives, pure food. Then I had changed doctors and she went from a private practice to a corporate practice and everything changed. I became very stressed from the way she was treating me. I couldn’t believe the trust I had put in her and after several visits I said, that’s it, can’t go back to her. I live in a very small town so not a lot of doctors and I have some prescriptions.
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What's compelling is that info alone rarely tells the story. Healthcare is longitudinal, and the meaning often emerges through context and trends over time rather than any single result. Technology should help clinicians see that story more clearly, not simply pile on data.
Well we have the technology now- AI when used well in the right hands can be magnificent in watching patterns etc.
I agree completely. That's where I think AI can have its greatest impact, not making the decision, but returning attention and by revealing patterns that support better clinical judgment.
I visited my doctor recently with a list of labs in hand. He rejected running many of them, including a full thyroid panel...and I have a history of Hashimoto's! Several numbers were abnormal, so at my followup, I expect to be told that I'm eligible for additional labs. Frustrating, but I looked at the labs I did get as the first domino getting pushed over. It gave me the needed incentive to follow an eating plan that's worked well in the past (AIP).
Thank you for being another source of support in my journey back to health, Dagmara!
you welcome and honestly if you have hashimotos and your doctor refuses to run full thyroid labs - you need a better partner.
I agree, but as a state-paid caregiver, the insurance is $25/month, and I plan to get what I can out of them for free, and THEN I'll get a better partner! An interesting tidbit...10 years ago, just after I was diagnosed, I met a Chiropractor who does CRS (Contact Reflex Analysis), and she set me on a totally different path with her testing. She said my thyroid was strong and healthy, but my liver was struggling to keep up. I changed my diet and took targeted supplementation, and my entire health picture changed...lost 40lbs in 18 months, TSH went to normal low levels, ultrasound showed a normal thyroid. My plan is to get myself back in the same saddle, and see if the same plan will work twice! I got sloppy in the middle years, eating pretty much anything I wanted. So...back to a structured plan I go!!
Thank you.
First of all, I’m so sorry for the loss of your precious daughter. And deep gratitude to you for all the ways you share your wisdom and heart with the world. You’re validating my experience of how difficult it can be to get additional labs ordered—and how important it is to approach lab testing by seeing and treating the human being as a whole person, rather than as a collection of individual body parts. ❤️🩹🌟💫