Went to my new/old doctor today - was I too harsh?


(Jane) #41

My company offers both and they used to contribute to both if you got an annual physical. I switched from an FSA to HSA several years ago because the “use it or lose it” was too frustrating. You needed a crystal ball to figure out what your medical expenses would be in the upcoming year.


(Bacon is a many-splendoured thing) #42

And that is why the FSA is so appealing to employers, since they get to keep what you don’t use.


(Jane) #43

Yep :+1:


(Ruth E Holleran) #44

How did you get hold of a CGM??! That intrigues me.


#45

I think when MD is translated into Latin, that becomes the definition :rofl:

To be fair, my Doc’s practice is an MD and a DO, and they practice exactly the same, but the MD became a Doc in India and I think that’s most of the reason why.


#46

Wow, I’m just bubbling with so much to say I don’t know where to begin. And I certainly can’t share it all in just a few paragraphs. Sorry about that, there is a lot to add.

I think this thread has two main points, one being about the quality of doctors and how reliable they are in these present days, and one being about the necessity and value of testing and avenues to obtain those tests. My bubbles are entirely related to the first point. Lol

First I’d like to say that you were not too harsh. Your review seemed fair and honest. If it comes off as overly negative or harsh, it is not your fault because that was your true experience, and that is more the fault of the doctor. Nobody should feel intimidated to not tell the truth, and sometimes there just is no nice way to say something that has to be said.

The ancient hippocratic oath may be dated, (and initially sworn to Greek Gods, LOL) but it still served the sacred purpose all these years of holding doctors accountable to remain upright when dealing with other people’s lives because those people were blindly trusting them to be doing so. It states, "Now if I carry out this oath, and break it not, may I gain for ever reputation among all men for my life and for my art; but if I break it and forswear myself, may the opposite befall me." And 2300 years later, the opposite that befalls them are negative online reviews which will shed true light on their art. The oaths they took do come to fruition.

Doctors also need to realize that they are dealing with a higher level of intelligence in their patients these days, and need to offer the same respect to them that they feel they are due themselves. Dr. Nadir Ali in his 2019 video about 'Why LDL cholesterol goes up with low carb diet and is it bad for health?’ said it best. He gives a warning to his medical colleagues near the beginning of the video saying that 1) Medical knowledge is no longer the monopoly of physicians, 2) citizen scientists have more insight into issues since they can think outside the box, 3) the change he made to his own profession was due to a “grass roots effort”, from patients demanding that their doctors change, and 4) unless the medical organizations and societies heed his warning, and bring a change from the top down, they were going to get “buggy whipped.” (He’s a funny guy, Lol.)

Don’t feel badly about your review. That doctor needed to be buggy whipped.

I have a Masters Degree in Computer Science, and a rather high IQ, but I left my career to take care of three kids with disabilities for 25 long years, which was rather expensive to boot without a second income. We all know what happens when money becomes scarce and stress is abundant: a woman doesn’t exactly look like the professional she once was. I cannot tell you how many times in the past 25 years I have been disrespected by a doctor and/or belittled for not being capable of understanding what they do. I would never assume that they did not have the capacity to understand how a computer works, they just chose a different subject to specialize in than I did, but we both could have excelled at the other’s choice and can understand whatever the other tries to explain. That kind of respect may have been less necessary 1,000 years ago, or even 200 years ago, and reserved solely for those of “educational means”, but in an era where education has been properly made available to all it is absolutely necessary to provide equal respect to every patient. It is much harder to discern just by looking at someone what their educational wealth is.

And it may have been hard for word of mouth to get around about their careless behavior and treatment years ago, but that is no longer the case. They are either in this because they love the ethical oaths that they have sworn to and desire to truly help others have a healthier, happier life, and will continue to do the additional hard work every single year of their practice, (that we all are doing, btw,) by enriching themselves to stay up with the actual science, or … they are not cut from such an honorable cloth after all, and are in it solely for the money - in which case their work will speak for itself through … you got it - online reviews.

Interestingly, while there aren’t many lines to the original oath, one of the ones important enough to be included states, "I will use those dietary regimens which will benefit my patients according to my greatest ability and judgment, and I will do no harm or injustice to them." So I find it strange that diet has been the one thing after all these years that doctors have failed to be properly trained in or to properly train themselves in, and it’s not for a lack of sufficient material, which is available to all of us today, not just doctors. More and more the patients are educating their doctors, and it really should be the other way around! Possibly those schools forgoing the hippocratic oath in favor of new ones or self-written ones made a bad choice, (ahem Harvard Medical…) because I think they may have misunderstood this key line in the original and omitted it. It’s a shame how many doctors took this oath and then turned around and began to take monthly payouts by drug companies to line their pockets with, just by prescribing their drug or promoting their biased science. Even worse is how many medical societies and organizations meant to protect the public are comfortably in the pharmaceutical pockets as well and also promote their “science.” It appears to the rest of us that many forgot their oaths, and this is one of the primary reasons so many of us are starting to doubt doctors and hospitals today, and see them almost as untrustworthy as lawyers! (Apologies to my lawyer friends: like doctors, there are many reputable and upstanding lawyers out there, they are just the minority and you need to hunt for them, that’s all. Lol)

The hippocratic oath goes on to say, "Neither will I administer a poison to anybody when asked to do so, nor will I suggest such a course." Now this has mostly been criticized for not supporting assisted suicides, etc. But I believe there was more to the word poison than just the obvious. Anything that can make someone much worse or to become seriously ill, or kill them slowly over the course of many years could be considered a poison. Sugar anyone?? I believe that sentence served a purpose beyond assisted suicide to ensure doctors remained reverent with what they prescribe somebody to do for their health.

I can’t fit in this same post my next share about my own experiences and needs to fire doctors here in America, and why, so I’ll make one more post for that.


What is going on with fluid draining out of my body?
#47

(Cont.)

I too have a few negative reviews I still need to leave about specific doctors over problems with a few last year. But what happened was so bad that my bitterness still reigns strong today so I still haven’t written them. I don’t want any doctor to take the easy way out and dismiss my review because it is unprofessionally laced with bitterness, I want them to seriously consider changing. That’s the purpose of leaving one. Unfortunately I need more time for my bitterness to fade and be replaced by a forgiving heart. It will happen, it just hasn’t yet. This was my life being messed with.

I’m in America, just outside of Chicago. We have all the same problems as Canada seems to have. Most seem to be dependent on the quality of insurance one has, however, my husband has about the best insurance you can find in America, and I still have had terrible experiences with doctors and specialists that shook the confidence I once had in the medical communities.

I have been sick for many years, and a lot may have been triggered by severely stressful situations caused by outside forces, but that didn’t stop the plethora of prescription drugs thrown at me for the symptoms. Had I been on this diet back then, I am certain my symptoms would have been less, and therefore the drugs in my system less with less side effects caused by those drugs, (weight gain anyone?) The stress stopped three years ago, but still I was slowly getting worse. I thought it was all due to my becoming obese due to the stress (5’2”, small boned, previously near 190lbs,) and my two ruptured discs in my lower back. Obesity and back problems were the cause of all my aches and deep muscle/bone pain, the loss of 3/4 of the hair on my head, and my depression, anxiety, and insomnia. I even blamed my kidney stone I had two years ago on both! Well, they may have contributed, but they were not the cause. I would still have had a hit to my health because I would still have borne significant stress, but it never would have been as severe as it was. Diet was the key. Yet the only help diet wise I was given in the past ten years was two years ago by the nutritionist in my doctor’s office who convinced me that I should be eating margarine, and never touch butter again, (repeated that one several times,) and to stay away from eggs, to never eat red meat, and to make sure that the majority of my calories were coming from healthy grains and higher carb vegetables. No other diet advice was offered by anyone, and after I lost 14 lbs following the nutritionist advice and came back so excited to share my numbers thinking she would be encouraging and supporting, and proud of me! Instead, all she did was rush through the appointment, ignore my numbers and charts I brought, and chastise me for having two steaks during those six weeks and returning to butter (I hate the taste of margarine.) I never got a beaming smile from her with a genuine “Great Job!” like I thought I would. Not one positive smile or comment. Hear the air squealing from my deflated balloon? It had such a devastating affect on me and caused me to feel like I was truly alone in all this. I lost all motivation and excitement to continue and gained the weight back within two months. That’s on me, but doctors have a lot of power over our emotions with their care. I fired her. LOL

And I also had a very serious condition that was slowly killing me that all the doctors failed to diagnose. Had I trusted the doctors I saw at first last year, I’d be sitting here typing this with significant pain, probably be in tears, been awake for three days straight, still be a high stroke risk, and sicker than ever before - oh, and practically bald.

But I did what you did - and I fired doctors until I reached those that listened to me.

The result? …

… I’m sitting here instead well rested, 10 hours of sleep last night with 8 of them uninterrupted, almost pain free, and more energized and alive than I have been since I was in my 20s. (I’m 56) I’m 9 weeks in for keto and down to 171. My goal is 135 but I am doing it slowly and responsibly. I want this to last and to be sustainable. But how I feel? It is absolutely priceless. I never thought I’d ever say this, but if I had to choose between feeling this good and being fat, or feeling like I used to but pretty and thin? I’d choose to stay fat in a heart beat. We make these diets about weight loss but forget that how we feel is actually far more valuable in the end. Luckily we do lose weight too. hee hee My hair is getting thick again. I haven’t felt depressed since last December and I’ve not had a single anxiety attack or even an anxious moment. I feel more level emotionally. I have energy that lasts all day long without any midday slumps. My vitamins are actually working for the first time in years now that nothing is interfering with them, either diet or medical conditions. And I’m off of over 7 medications completely. Two of those I had been on for more than 20 years.

So what was killing me and how have I been cured? Surely it wasn’t just Keto?
Well, firing doctors was the first step…and a very necessary one to get to the truth behind my medical problems, and a healthier diet.

Whenever I tried to be active in any way, I injured myself or broke something. That makes getting fit awfully difficult. I had displaced two ribs rebuilding our deck two summers ago, and I was just so sick of being so sick, so I started physical therapy. It has always helped me avoid back surgery. I did 4 straight months 3x week faithfully and it wasn’t doing a darn thing to help or strengthen me. She stopped treating me, recommending steroid injections for my back so that I could get benefit from future therapy.

And this is the point where my faith in the medical world began to crumble.

I went to a specialist at my orthopedics to get the injections ordered, and she delayed any back injections for over 6 months!!, treating me as you would someone with no previous back injuries or problems, ignoring that I was just coming from a lot of physical therapy work, causing me to lose whatever progress I did make in all those months and needing to start from square one whenever I returned to it. That wasted time and money. I was furious. She told me that when it came to my lower back, it was best to start from scratch. I disagreed. I only got the first injection after complaining repeatedly for those six months. However, she refused to let me do general anesthesia despite my record showing that the last time it was done with only local it went very badly. My record clearly states that I need general for this procedure and why. I also had an EMG two months before I saw her, and the neurologist reported that I had something that apparently is a real condition that I can’t remember the name of, but it’s extra sensitive nerves or something, where I feel pain much, much, more severely than the average human being. I could have cried because I always thought I was just a weak crybaby. :rofl: He commented on my bravery during the test in spite of the immense pain, pointing to it being a valid diagnosis. God Bless that sweet man! Cuz I do try really hard to always get through the pain and not be a baby, but sometimes it really hurts that bad. It’s nice to know it’s not all in my head. Still, even with his report, the ortho Dr refused to do my injection with general anesthesia, pointing to my age being too old for anethesia! OMG, how do people my age get surgery?? I chose to be brave. Hey, maybe I could handle it now I thought? Maybe I can pretend I’m in the trenches of a war zone and the only way our side wins is if I don’t scream? All I have to do is grin and bear it and get through 10 minutes of pain. That’s all. I have that kind of spirit, so maybe I could do it. So I stopped arguing with her and told her fine, I’ll try it. I * Felt * EVERYTHING! - I tried so hard to stay still, and it is impossible to explain the pain I was feeling but at one point it took two assistants to hold my upper body down so that she could finish and all I could do was cry and scream. Even though I was still crying, I asked eagerly “did I do ok? did you get it?” afraid she couldn’t and would be angry with me. As she came around the table and removed her gloves she laughed and said, “ya, I got it. We will use general for the next injection. You convinced me.” It wasn’t until later that night when I thought back on that and I wanted to punch her. I had a medical history showing everything she saw that day, and she wouldn’t take my word for it. She had to torture me first to believe me. I fired her the next week. I found someone else to do the second injection. I didn’t much like his bedside manner, so I will need a new doctor for my back in the future.

However, the only thing the first ortho did right was note my then age of 55 and order a Dexa scan. It came back with a -3.6 T-score for my spine and a -2.9 for my hip and wrist. We discovered that I had severe, advanced osteoporosis and the bones of an 88 year old. But why? I’m too young. What caused it?? We were rebuilding our porch last year during this time and I was being ever so careful with my back, not knowing about my osteoporosis yet. I chose to lay on my stomach on a pillow when I had to remove caulk from the floorboards - to protect my back. Well the friction along with my weight on my ribs caused me to break one of my front ribs! That started four months of pure sheer hell that comes in second to my most painful experience ever, my kidney stone which needed a surgery to remove being the first. LOL. My rib keeps rebreaking even today while my bones are still so weak. I forget what they call it but it’s a fracture that won’t heal because what little weaving of bone happens to repair it gets easily broken again with the slightest of pressure, like rolling over on my side in bed, and for the first time in my life I cannot find any doctor that specializes in broken bones! Whenever I asked who to see, even the orthopedics couldn’t tell me. How nuts is that? And this is America, and I can afford to see any doctor I choose to. But no one knows who to see about my rib?

My gallbladder was reflexively removed 13 years earlier as a Hail Mary for resolving pain I got in my upper right chest and shoulder. (gas? LOL) Nobody first considered diet, beyond “stop eating all fatty foods.” Well even when I did that I still had a lot of acid reflux and these sharp heart attack pains. There was no serious consideration of the science of our gut and what all could be causing my symptoms. Just rip out my gallbladder and tell me I don’t really need it anyway. (Not joking, that’s what I was told,) Then they put me on Omeprazole 40mg every day because afterwards I couldn’t eat any kind of food without vomiting. They never sat me down and helped me understand that relying on it long term would cause osteoporosis and I should work with them to find a better resolution to wean me off of it before 6 months. No they didn’t do that, but rather the GI told me I could take it the rest of my life without any concerns. :flushed: So that’s what I did! Thirteen long years at 40mg! At the time of my osteo diagnosis, I blamed it on Omeprazole. But the ortho didn’t believe Omeprazole could cause it, only contribute to the severity. Are they all protecting each other from malpractice??

She only wanted to refer me to a nurse in the women’s health clinic who “manages” osteoporosis. They don’t do further testing at all, and only monitor patients after they are placed on osteo drugs to strengthen their bones. Drugs with significant side effects, and even more severe ones if there is a different cause of that osteoporosis! No testing would be done to find out the root cause, to find out why a young 55 year old woman would suddenly have severe, advanced osteoporosis that normally is only seen in 80 and 90 years olds. It bothered me that such a severe advanced condition wouldn’t be handled with more seriousness, by a doctor specializing in such. I was told no doctor specializes in osteoporosis. smh

My primary care agreed with me. I adore her - mostly. Though she has started to distance herself from me the more educated I am becoming, (why is that???) but I still love her anyway. She listens, makes me laugh, and considers patiently anything I say. We have conversations - which I believe is what you had wanted from your doctor and didn’t get. She did a blood test of my PTH and calcium, and agreed with me that I should see an Endocrinologist for my osteoporosis, and not just a nurse, since the numbers were a little “elevated.” Well, they were more than a little elevated, they were very elevated and we didn’t know this.

Enter the next problem in healthcare: blood testing. For the entire year of 2021, I was left to deteriorate for another full year due to inaccurately read tests and improper reporting of the blood test results. See, someone who is 55 has very different “normal” ranges than say, a healthy 20 year old. In my area in America, most blood test results report the norms of an average healthy 20 year old. How asinine is that? My PTH and calcium tests kept being reported as either in the “normal” range or “slightly elevated” when in fact they were very high. A healthy 20 year old may have a PTH that falls between 12 and 88. They can have an 88 and still be considered in the “normal” range. But a 55 year old should never be above 65! The healthy range for an older adult is 15-65. Only the first PTH test done by my own doctor was reported with that proper normal range, and my result was a 76. Combined with my slightly elevated calcium levels (more on that later,) a 76 should have been considered too high, not slightly elevated. The other six tests I had the rest of the year (done by the same outpatient center) were reported with 12-88 as the normal range. So my 79, and my 89 and my 94 were all reported as “normal” or “slightly elevated” on the results when in actuality they were way too high for my age.

Enter the second problem in the system: doctors ignoring these differences, rushing through appointments, being careless with patient symptoms, and blindly following outdated and unsubstantiated “normal” zones for tests. Like Calcium. Most specialists won’t consider hyperparathyroidism until you have had very high levels of calcium, like over 11 and 12. Again, they reflexively glance down at a blood report with yellow/green/red bars, green indicating normal ranges for a 20 year old, and if you are still close to green, it’s ok. With parathyroid tumors, it is NOT ok. It is not how high your calcium is, it’s how long you have lived with an elevated level above 10.0. Period. Someone with a consistent 10.1 like I had can have a far worse condition than someone who has a 12 or 13, and the data clearly shows that usually the lower scores of 10.0-10.5 had more symptoms and all more severe.

The medical community is having a really hard time adopting the truth about their approach to hyperparathyroidism, because the truth is ugly, that they mistreated thousands upon thousands, never questioning their science, and probably caused some very severe health issues and/or deaths by neglecting so many. That’s a big pill to swallow and why it is taking them so long. (It’s probably the same reason so many are dragging their feet to embrace low carb and all its science.) There is a plethora of data that the Norman Parathyroid Clinic in Tampa has collected over 30 years from 55,000 patients and surgeries for hyperparathyroidism. It clearly debunks the former wisdom, and clearly shows how that former wisdom had been randomly selected as an interim until further study could be done and they reconvened, which never happened. Instead it was adopted as medically sound and scientifically proven guidelines. For 30 years Dr. Norman has provided the very data they were waiting for! He has tried to be heard and was always brushed off as an alarmist. Many top universities and surgeons are finally coming around and now have the respect for Dr Norman and his clinic today that they should have had 20 years ago, but too many still don’t, and how many lives were lost while the medical community was buffing out their egos?

That first endocrinologist I went to simply gave a reflexive glance at the test results to see where the little arrow fell on the color chart. She didn’t notice or question what the normal range was or see that those weren’t the normal ranges for my age. The specialist did not take the time to be careful. She interrupted me mid-sentence like a robot every time I tried to tell her about one of my 16 symptoms, saying “that has nothing to do with an endocrine system.” Really? Hair loss? That’s one of the primary symptoms! Insomnia? That’s primary too! Kidney stones? Well since my faulty blood test reports showed me near normal, it couldn’t possibly be endocrine related. No doubt it was due to my osteoporosis. Yes, but what caused that in someone so young?? She stared at her computer the entire time I was in there and never looked at me. I was unable to finish sharing all my symptoms, and she said I definitely did not have a parathyroid problem, and my osteoporosis was simply caused by too many active osteoclasts. Again, why? She didn’t think I had any educational insight worthy of any respect at all so did not offer me the courtesy to discuss anything and rushed me out of there before I could ask anything else. When I asked very detailed questions of her in a follow up email, she proceeded to answer questions I never even asked. I thought I was in the twilight zone. :rofl: Looking closer, I noticed she didn’t read my email carefully, skipped words, and made inaccurate assumptions about what I must have asked. I called her out on it, and told her that if she couldn’t give me the same respect and courtesy that I was giving to her and anything she said, that I would like to see a new doctor. She apologized profusely, agreed that she rushed through it, then answered each question properly. She also told me she understood if I didn’t feel she was a good fit and had no problem with me switching doctors. That was the only thing she did right in my short time with her.

I fired her too. And when I tried to find a new doctor, those I chose refused to see me because in our area, seeing a doctor just once meant I was an established patient of theirs. I even got her blessing to switch and they all blackballed me. Ya, America, even with the best insurance plan out there.

I started to research my symptoms on my own and became convinced I had hyperparathyroidism. It’s a very, very serious issue, far more serious than high cholesterol or high blood pressure, especially if left untreated because it slowly kills organs and causes heart and kidney diseases and more. It can rob someone of 8-10 years of their life. Yet they put more time and attention into monitoring our cholesterol and blood pressure?? And they fail to properly monitor for hyperparathyroidism?

I was accepted by the Northwestern University Northwestern Medicine Endocrinology department to see an endocrinologist there that I hand picked since reviews said she “listens” and is patient, and doesn’t rush through appointments. She was all that and more, ever so understanding and took the time to explain everything clearly to me. She showed me my actual dexa scan images so I could fully understand just how serious my condition was. She practically prescribed bubble wrap until my bones grew back and became stronger. She did say it was wrong to not find the source of the osteoporosis before choosing any treatment because I was just too young for my scores, and that source was important. While there was an outside chance that I just randomly developed too many osteoclasts without any cause to point to, it would be rather rare, so worth the time to investigate more. And she didn’t think Omeprazole all on its own could cause my severity. She ordered oodles of tests to rule out everything under the sun. I felt so validated!

But…she too ruled out hyperparathyroidism. Why? Because of improperly reported test results telling her my numbers were normal, that’s why, and she was also guided by her department to adopt the old thinking that calcium wasn’t high enough. She ordered osteoporosis drugs and I was three days away from the intravenous injection. Yet she let me have any test I asked for because I was scared to start the drugs. So I pushed for an ultrasound that isn’t very reliable at all for parathyroid tumors, but I was grasping at straws because on paper all my symptoms pointed to hyperparathyroidism and if I DID have that, then the osteoporosis drug treatment would be a very bad thing to do to me. I had 16 of the 22 indicators for parathyroid tumors. Most people the Norman Parathyroid Clinic in Tampa operates on have only 5 or 6 symptoms at time of diagnosis! I also wanted the ultrasound because the sestamibi scan I got previously, (also not reliable outside of the hands of an actual surgeon,) didn’t find anything but what it thought were “fatty cysts.” I’d like to meet THAT radiologist! Thankfully I must have been laying just right because the ultrasound did find something, but the radiologist felt they were an experienced endocrine surgeon themselves for the day, and ruled out parathyroidism in the report. :joy: So the endo still sent me to see one of their endocrine surgeons just to be certain, because the ultrasound disagreed with that report.

In the meantime while waiting for that appointment, I found the website to Norman Parathyroid Clinic in Tampa and read everything. I was now absolutely certain of my diagnosis. I would have to fly down for an in person appointment because I couldn’t afford the $1700 teleappt cost that insurance doesn’t cover. It’s cheaper for me to fly and pay for a hotel.

Two days before going, I had the appointment with the Northwestern surgeon, and all I can say is there will be a second scathing review soon. I had fired her in my head halfway through the appointment. I have never been more offended and talked down to in my life! At one point she gave a belittling laugh, stumbled over her words, and said I couldn’t possibly understand not being a surgeon myself, while placing her hand on her chest and shaking her head like I was a foolish child. :flushed::unamused: She’s lucky it was teleconference or I would have slapped her and gladly paid any legal fines for doing so. :sweat_smile: She did tell me that the sestamibi scan WAS misread, and there WAS a parathyroid tumor! They realize this two months later? And only because I kept pushing the matter with everyone did I get in to see her when I did, otherwise they were trying to hold me off until February of this year just for the first appt! She said I indeed had hyperparathyroidism and yes I needed a surgery soon and she would try to fit me in before the end of January. But she said they only saw one. She said, “…less than 15% of people have more than one so it’s a very good chance that this is all you have. We can cure you.” So that means it’s an 85% success rate. I’m sorry, I was 55 with the bones of an 88 year old, I need better than 85%. In actuality, 20% of people will have more than one, and if I were one of them, it would drastically shorten my life because at such a young age I would be left to live just like I had been living in all that pain and anxiety, while organs slowly deteriorated as would my health and the quality of my life would be horrible, until one of the other tumors showed up on a scan one day, IF it ever did. Then I would have to pay for a second surgery, and maybe a third. Hear the cha-ching? All while I’m having a sickly and miserable life and removing years from my life that can never be given back. That HAS to violate the medical oaths!

I asked why they wouldn’t test the other three parathyroid glands while already in there since they are all so close together and usually right behind the thyroid, like NPC in Tampa does it, and the first words out of her mouth were like a gossiping school girl telling me how another girl has an STD or something. She went right for their jugular to make me doubt them as a legitimate clinic! “Well you know, be careful, they have blah blah blah…” Whyyyy do that? If it were true, which it wasn’t, you wouldn’t have to say anything at all. It’s despicable and unprofessional to trash the competition when you are a doctor! Especially without firm, documented evidence. She said it was voodoo science (kid you not!) that they had no way to accurately test the health of the other glands (not true, so incredibly false,) and that it was irresponsible to turn a half hour surgery into hours long going on a goose chase to see if there were more tumors. See … that’s how a surgeon with less experience would see it. And none of the surgeons in the top hospital in Chicago seemed to have enough experience. But NPC does, and they can test all 4 parathyroids and be done and have me sewed back up in under 13 minutes, before a drop of blood even appears. Not even 20-30 minutes that it would take other surgeons to remove just one. And if one of them isn’t where they usually are, no - they don’t go looking for it. But they do test what is there. So I asked her what data she could share with me to show me that their way was the more responsible approach, because if it were, why should I spend the money to go to Tampa twice to have surgery there? She said they didn’t have any data to support their approach, and if I wanted further discussion about that to make another appointment. Well that’s what this appointment was for!

Thankfully my endocrinologist (not the surgeon) told me she heard great things about NPC and she would support my going there for surgery. I’ll always be grateful for her honesty.

Two days later I was sitting in the Tampa clinic’s office and being shown how I had a huge tumor, and most likely a second and where it was, and walked through a ton of data showing why they do what they do the way that they do it, and how they are able to ensure any remaining glands are functioning properly. They shared the science with me!! They did not rush me out of there and gave me time to absorb what they were saying, and waited for questions to develop. That takes time. I hate how doctors say quickly, “anymore questions?” and give you but 10 seconds to process and see. I loved how respected I was, and how they really understood my thinking and could explain anything that I asked in logical, sound ways. I appreciated that they recognized my level of intelligence, and did not base it on my stay-at-home-mommy attire. But even better was seeing first hand that they were the opposite what the Chicago surgeon tried to lead me to believe. They actually had the high character to defend the Chicago doctors after hearing what she said about them! They were so professional and gracious and helped me understand why other hospitals do it the way that they do and why they would never attempt to test the other three glands because they don’t have the same skill or experience and it would be irresponsible. Absolutely dignified to the core in the face of social harassment. I can only hope to learn to become so dignified in my own conflicts. (I guess that starts with stopping my wanting to slap every doctor I come across that tries to hurt or insult me. :joy:)

A week later I flew back for a surgery and guess what? I had three, T H R E E, huge tumors removed! I was even given a picture of the uglies in life size. I was blown away. One didn’t show on the scans at all. Proof positive that if I had stayed with Chicago I would be dying sooner. The part of the hippocratic oath of “…, and I will do no harm or injustice to them.” was certainly ignored by the surgeon at NWMedicine. Her greatest ability and judgment to do no harm or injustice to me would have been to recommend I saw NPC if I could since they can offer a 100% cure, not an 85% one, and if I couldn’t afford to go there they would do their absolute best and we would pray I was part of that 85%. I could have respected THAT.

Sure enough, I am sitting here 100% cured because of a surgeon in Florida who remained steadfast against a huge current from the medical community to do what he knew was right all these years and keep his head down and simply collect the data. God Bless him.

And because I questioned absolutely everything and everyone and I refused to believe what I was being told by multiple doctors from different offices if I couldn’t understand their reasoning, all who turned out to be wrong. And look at that, I have no training as a doctor, and yet my research was better than theirs.

So yes, times are changing. Doctors are failing to keep up. Fire your doctors when something doesn’t feel right. Fire them when they don’t give you enough time to fully understand. Fire them when they interrupt you or ignore your symptoms, or talk down to you or belittle you. And fire them when they fail to carefully read test results or answer your many questions about those results. How can we possibly respect them and what they do if they don’t honor us with that same respect?

Just make sure you roll up your sleeves and do that necessary research yourself, and do it well. It makes a huge difference to your care.


(Michael) #48

Wow, thank you for sharing your story (all of it :slight_smile: ). I am so glad you are cured and finally had your health issues resolved. I forgot to mention this quip within my review, but at one point this doctor I saw (after I was suggesting lp(a) was for coronary risk, not diabetes), said to me, “what is your background?”. I replied with “theoretical physics”. She replied that she “would not discuss health protocols/issues with you since you are not a doctor, I will only discuss/debate medical issues with another doctor”. As you noted, extreme hubris, and completely unfounded. Having studied Einstein’s theory of general relativity, quantum mechanics and super-string theory for a few years and written a few published journal papers, I am confident that given enough time, I can understand most concepts. My background in biology is particularly weak, but I am starting to catch up. Fair warning to all doctors!!


#49

I’m glad to hear you were OK with my sharing!

It was so long that I woke up this morning feeling a bit chagrined and thought I should really come back and delete most of it out of courtesy to others. I don’t have time today to spend trying to just shorten it. So I’m very relieved that it was the OP that read through it and could relate.

I do understand how doctors don’t always have enough time during an appointment to give us a college level training session to “bring us up to speed” on what they themselves already understand, just like a car mechanic, or a carpenter, or even an investment counselor - their jobs are much easier if we just trust them to know and do what is best. It can be highly frustrating when someone doesnt take our word for it when we know our craft well and know that they would understand if we had the time to explain. I’ve been on that side of the fence many times in my own career. But there are so many different approaches nowadays in every field and not all are beneficial or cost effective, so we want to know logic and reasoning first before hiring someone to do the work. And when it comes to our health and related quality of life, which in turn impacts our own ability to make our own livelihood, or even life or death, it should be expected to help someone understand, and they need to learn how to do that.

TheHippocratic oath does make reference to only divulging what should be considered holy secrets of their profession to others in their profession: “And whatsoever I shall see or hear in the course of my profession, as well as outside my profession in my intercourse with men, if it be what should not be published abroad, I will never divulge, holding such things to be holy secrets.”
But I never understood it especially “if it be what should not be published abroad.” And “Secrets” ?? Lol Really? This is my life, you will have zero secrets from me about that.

I think some doctors today have taken that part just a bit too far out of sheer arrogance, trying to cling to a time when that separation of knowledge made them higher and more important. Again it was for a time when education was limited to a very scant few so it would have been like trying to educate a bunch of five year olds on stem cell research or something and there just wouldn’t have been time or patience when they knew their audience had not developed the necessary critical thinking skills to teach. I guess most people were like that compared to doctors hundreds and thousands of years ago. It’s just not that way anymore.

And I’ve had enough experiences with doctors who have tried to explain and got it down to a great mini session in just a few minutes, so I know it’s possible to share more than some do. But if their only reason for trying to maintain that monopoly on the science is fear of being questioned or called out on doing something wrong, they don’t deserve their degree. Being questioned is a gift because it enables the potential for even more growth and advancement.


#50

Outside the US you can walk into a pharmacy and either order one or buy it off the shelf without a prescription. Although many countries use mmol so you would need to multiply by 18 to get the correlation. Also there is a US company called Levels which I have not used, where you sign up for their service and they have their own doctors prescribe one for you. Finally, if you have a good relationship with your doctor and are prediabetic (or not) they may be willing to prescribe one for you. The downside is that insurance may not cover it but I am told Costco (which is the best place to get prescriptions without insurance as they also give you their own discount card although you may have to ask, started this when my dog got sick a few years ago), especially if you are a member or through Good RX are good options for cheaper sensors. Insurance coverage is always a separate issue from whether a prescription can be issued


#51

Wow what a story. I am surprised they spoke to you that way. While I try to avoid doctors, I sometimes accompany friends and relatives. I present as an overweight 50s mom type who does not dress particularly well. I have no medical training and barely took science in college. At some point during any discussion I get asked what my medical background is. This is not said sarcastically but usually because I know the buzzwords, and have some experience with family in most areas. However I have a good friend who is having something diagnosed, and we are running to some of the same roadblocks. I am trying to convince her to get a second opinion

While my background is not medical at all, I am sure unless they are getting a huge surgery fee they are not upset to see a patient who asks a lot of questions and questions their treatment to seek care elsewhere. Think of it this way, if you are spending a significant portion of your time with one patient and you have 50 others to see that day how is that effective. I think GPs are allocated some ridiculous amount of time per patient https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2254573/ this article is from 2000, I am sure it is less today. I am not saying it is ok. Thats why if there are other consequences those may have more influence


(Ruth E Holleran) #52

Apparently my doctor cannot prescribe a CGM without meeting markers I’m not going to reach–wildly out of control diabetes, hospital stay–and I don’t think it is insurance telling him this. Federal rules of some sort.

I have already given up on BlueCrossBlue Shield. That company changed what glucose monitor it would pay for, a poor one, so I am buying my own strips for the Contour Next I purchased myself.

LEVELS looks interesting and I see how they can get around that, just as Direct Labs has one doctor to sign off on the blood tests. I am very grateful for this model. I’m looking into it. Thanks so much for your reply.


(Edith) #53

Wow! That’s all I have to say. Wow!

But, since you have written down all of that information in your post, maybe you can use some of it in your reviews. I would say it sounded honest and not snarky or unprofessional.

I’m curious: did you ever let your Northwestern surgeon know what was found by the doctors in FL?


#54

No I didn’t. Again, I was too angry about it. I write things in my notes app first and I had three separate drafts of a letter to the surgeon the week after my surgery and none were ever fit to send. :joy: There is no nice way to tell someone they are not working in the best interests of their patients at all, and their arrogant bedside manner is appalling.

I only let my endocrinologist know about what happened with my surgery since she continues my care and supported my going there, but she was a lot more distant about it than before I left and didn’t allow much time to talk about my experience there, which was sad for both of us. I have a hunch the higher ups had a word or two with her. LOL. I made sure to upload the photo of my tumors to my account though. :joy: I figured either she might tell the surgeon herself or if the surgeon was curious and looked at my account they could see the results. I have a hunch she may have looked because they were nervous about me during my appt. Some higher up doctor who looked like the head of the department kept coming into the room to listen for a few minutes at a time, which is odd. She is one of their longest held surgeons and supposedly second best, so it wasn’t “training” or an intern or residency thing. They knew I was trying to choose between them and Tampa before my appt and they were oddly abuzz about it. Plus, she later edited the “after appointment letter” she initially posted to my account, like almost a month or two later, and the revised version tries to spin what really happened and outright lies about some things that she or I said. She even said I said things that I never did! Major CYA going on. Funny thing is I print off everything the minute I see it, so I have both copies. :rofl: I’m not stupid. But what can I possibly do with it? Nothing unless I was interested in suing people, which I’m not. I did send her a quick note that simply said “what an odd update to the facts that were already accurately documented previously.” And left it at that. Nothing but the sound of crickets …

About a month after my surgery, I did fill out a feedback form for the hospital’s endocrinology department as a whole and their surgery department, praising my endocrinologist profusely but criticizing the surgeon. And I did give rather critical feedback about the surgery department in general and their philosophy on this disease, letting them know what I shared here and how I believe they are hurting others and why. I never heard a single peep out of them. All I can say is if I was running a department and read my review, I would have been on the phone to that person in the blink of an eye to get as much information and details as I could to fully understand where all the mistakes were made so that I could rectify those areas asap. But no, these guys seem to believe they are above reproach, at least this particular department, and that’s disturbing to me. I told them that too. Lol

They probably stored my feedback in the back of some dusty closet. :joy:


(BuckRimfire) #55

Is ANYONE here able to get a real Kraft test? Having patients hanging around the lab for five hours doesn’t sound like something that very many practices would like.

These guys will do one by mail with blood spots on paper that you can prepare at home.


This is just a half-hour to hour drive (depending on traffic and regard for the speed limits) from me, but I know nothing about them or whether their test works well. You could ask if they will mail the test package to Canada. If they won’t, you could probably find a work-around in the form of someone (ahem) in the US who would order it for you, mail it to you, receive the completed samples from you, then mail them by US Post to the lab.

I never did a Kraft test because by the time I heard about it, of course I had been keto for several months, and that is said to affect the results. My understanding is that you’d have go back to eating a “standard” diet for quite a while (months, I think) before taking the test to get your “true” Kraft profile if you’re already keto.


(Michael) #56

I think you might be talking about initial insulin response being dampened due to pancreatic inactivity. Apparently when you have been keto/carnivore for a while, you pancreas can still produce lots of insulin, but it needs some warm up time to get going again for first response to carbs. For this reason, it is recommended for very low carb eaters to have enough carbs (like 100g or something) to reacclimate your pancreas to reacting with an initial first insulin response (as normal) before the follow up secondary insulin response kicks in. The warm up time I read was 3 days of re-introducing carbs - not months. Assuming that this is the issue to which you were referring, and that my understanding of the insulin response is correct.


(BuckRimfire) #57

Not that I’m defending Harvard, or that Harvard needs me to defend them, but it’s interesting that David Ludwig and Walter Willet are both at the Harvard Chan School. I’ve always wondered if those guys fight constantly, ignore each other, or get along despite what seem to me like irreconcilable differences between their advice.

edit: It would almost be worth going to a Ketofest or Low Carb Down Under conference just to ask the participants who might know the gossip about this question first-hand. edit 2: Maybe I should start a topic here to ask if anyone knows such gossip.


(BuckRimfire) #58

I can’t remember specifically what I read, or the mechanism. I don’t think it was as short as three days, since I wouldn’t have thought that was too daunting. It may have been weeks, not months, but I can’t recall.

We went on a two-week high-carb vacation last year, so that might have done it. I don’t have much interest in the Kraft test for myself, since I don’t have a family history of diabetes or signs of metabolic syndrome. I’m probably in the lucky 12% who resist the high-carb diet well. I’d be interested in seeing which profile my spousal critter falls in, since she does have a diabetic parent and the metabolic syndrome profile, but she wouldn’t be interested enough in the results of the test to stab her fingers six times in one morning!


(BuckRimfire) #59

Why would you delete all that work??? If someone doesn’t want to read it, don’t cost nothin’ to scroll past it…


#60

The state of medical insurance in the US is abysmal. My doctor after much badgering ordered a non-generic GM. I have a high deductible so I have to pay 100% of cost. The test strips are outrageously priced but my thought was that after a few months and meeting my deductible, my insurance would pick up a portion of the cost.

Wrong! My doctor is only able to prescribe(dictated by whom? Insurance?) 100 test strips a month. This means I’ll never meet the deductible. I can buy them over the counter but at a price four times my generic strips. I wanted this meter because of accuracy.

He also said that because I’ve lowered my HbA1C to a level, while still diabetic, deemed acceptable to insurance?, I can only have my A1C levels tested once every six months…

Exactly!