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When Your Doctor Isn't Helpful
More and more I am hearing from people whose doctors refuse to prescribe them the safe, effective drugs they need to regain normal blood sugars. They are told that there is no need to lower A1c below 7%. If they are over 60, they are told that they don't even need to keep their A1cs in the 7% range. Some are told they can only have prescriptions for 30 blood sugar test strips a month. Some are denied any strips.
If cutting carbs and taking metformin doesn't lower their blood sugar to normal levels instead of being prescribed the safer drugs that address insulin deficiency--repaglinide and insulin--these people's doctors insist they take one or more expensive, dangerous incretin drugs like Januvia or Victoza or the even less understood, potentially more dangerous SGLT2 inhibitors like Invokana or Jardiance.
When those drugs aren't effective, these doctors may still tell these people to be patient and refuse to prescribe them insulin until their A1cs are over 11%.
These patients write to me because they are desperate, and they should be. They are experiencing blood sugars high enough to damage their nerves, retinas, and kidneys. I have heard from so many people in this situation lately that I've decided to put the advice I give them on this page, where others in the same predicament can find it, not just those who write to me.
When Is It Essential to Find A New Doctor?
When Your Blood Sugar Is Rising Quickly And Oral Drugs and Diet Aren't Working
There is a form of adult-onset autoimmune diabetes that is frequently misdiagnosed as Type 2, especially in people who are overweight due to having other autoimmune diseases like Thyroid Disease. Unfortunately, many family doctors appear to be completely unaware that this condition exists and don't know enough to refer you to the specialists you need to deal with it.
You can read about this condition, called LADA for short, HERE. The most important characteristic of LADA is that blood sugars get worse over a fairly short period of time after they have reached the diabetic range. The blood sugars characteristic Type 2 Diabetes may worsen suddenly as they reach the diabetic range, but once there, they tend to stabilize. More importantly, the high blood sugars characteristic of true Type 2 Diabetes respond very strongly to your cutting back on carbohydrates. I often hear from people with true Type 2 Diabetes who have dropped their A1cs from the double digit range to the 5% range within a few months just by cutting back on their carbohydrate intake.
But the situation is very different for people with autoimmune diabetes. Their blood sugars will drop in response to carbohydrate reduction, but their average blood sugar will still climb from month to month. This is because their insulin-secreting beta cells are being killed off by an autoimmune attack. If there is any possibility you have LADA you must demand that your doctor run the tests that are used to diagnose this condition or refer you to an endocrinologist who will do them. These tests are the C-peptide test along with the antibody tests (GAD and islet antibodies) that diagnose autoimmune attack on the pancreas.If your doctor won't do these tests you must find another doctor who will. LADA develops slowly, but it is progressive. The earlier you treat it, the less likelihood that high blood sugars will damage your body.
Thin People Diagnosed with Type 2 Diabetes
Quite a few thin people diagnosed with Type 2 Diabetes have written to me, completely baffled, after their doctors have told them their diabetes would go away if they just lost weight. Many others write to me because after lowering their carbohydrate intake to control their blood sugar they find their weight dropping to dangerously low levels. Once again the problem here is physician ignorance.
Very, very few people with true Type 2 Diabetes are thin at diagnosis. Many may have been thin in the past--perhaps even a year or two before diagnosis--but if the problem is the kind of diabetes characterized by strong insulin resistance almost all people with Type 2 Diabetes put on weight as their blood sugars rise out of control. Those who don't, my experience confirms, don't really have Type 2. Almost every one who has written to me with this problem turns out to have either LADA (discussed in the previous paragraph.) or rarely, some form of MODY, discussed HERE.
This problem is especially tough for people of Asian ethnic heritages, as most research on Type 2 has been done in Western European populations. Asians have different diabetes genes than do Western Europeans. In most cases thin people diagnosed with Type 2 diabetes have some unidentified genetic condition which limits their ability to secrete insulin.
In most cases these people do much better if their diabetes is treated with insulin rather than the drugs usually prescribed to people with true Type 2 who are insulin resistant.
Because so few of the general practitioners who diagnose and treat people just diagnosed with Type 2 are even aware that these other conditions exist, it can be extremely hard to get one to refer you to the endocrinologist you need to get appropriate treatment. Many will insist you spend six months each on every new Type 2 drug adding each new drug to the others they previously prescribed before giving you a referral.
When You Are Obese and Not Responding to Drugs Including Insulin
There are a small number of people who have extreme insulin resistance. These people may not respond to dietary changes or even typical doses of insulin. They may find themselves gaining weight even when eating very little. When they gain weight and their blood sugars don't respond to treatment their doctors may accuse the of not taking the drug or not eating the diet--what doctors label "noncompliance." Some are ordered to get weight loss surgery rather than being referred to an expert who can diagnose what is really going on. The problem here may range from an allergy to injected insulin to Cushing's Disease, to any number of rare conditions only a true expert would be aware of.
If you are taking your drugs and cutting way back on carbs but things keep getting worse you will need the help of a very skilled endocrinologist to sort out what is really going on. If the problem is extreme insulin resistance or an insulin allergy, there are special insulins that are formulated for people with your condition which will work much, much better than very high doses family doctors prescribe of common insulins. There are protocols for addressing insulin allergy. But you can't get these drugs or treatments from family doctors or even from most of the supposed "specialists" who practice out of local community hospitals.
Where Do You Find the Really Good Doctors?
Switch Doctors Effectively
If your problem is merely that your family doctor refuses to give you reasonable prescriptions that should help you, or insists that high A1cs are perfectly fine, you may be able to solve your problem simply by finding a new doctor. It may take a couple of "get to know the doctor" visits to find someone you can work with, but they do exist. Make it clear in a polite but firm way at your first meeting that you are knowledgeable about your condition and need a doctor who is a partner who will work with you. Ask outright if they will support your quest to get normal A1cs rather than the ones that reflect blood sugars high enough to cause complications.
If your insurance limits the doctors you can see, you have two choices. One is to ask to see another doctor the insurance will accept. The other is to change insurers at the end of the plan year. Kaiser, for example, is notorious for limiting access to everything from test strips to diagnostic tests and refusing to treat people whose A1cs are at the 7% level that slows down but does not prevent any of the important diabetic complications.
How Do You Find A True Specialist?
If you think you might have a condition that requires the help of an endocrinologist, like LADA or failure to respond to drugs and/or Insulin, it is vital that you find a true specialist. The quality of endocrinologists ranges from abysmally bad, to mediocre, with only a very few practitioners earning the right to call themselves experts. Usually, though not always, these true experts are associated with the big regional specialty hospitals that are associated with well-respected medical schools. The doctors you want to see are the younger doctors who work out of these hospitals. The older ones, from reports I've received from correspondents, tend to have very closed minds, and many, sadly, are on the payrolls of the big drug companies, which skews their advice. However, younger doctors who were trained in the recent past whose grades and performance in their residencies were good enough to get them an appointment at these highly prestigious hospitals can often be very helpful.
A good endocrinologist, like any good doctor, should be willing to work with you as a partner--not hand down commands from on high. They should explain to you why an approach you want to try might not be best for you in terms you can understand. And they should respect you if you do the research it takes to better understand your condition, not tell you not to bother your little head with it.
Understand How Referrals Work
Doctors often don't refer you to real experts. They refer you to the doctors who practice out of their own hospital network. They refer you to the doctors they have built friendships with. Some just refer you to the guys they golf with. Even worse, many doctors work within systems where they are paid more for not referring you or for not prescribing certain drugs. This can make it very difficult for you to get to a real expert if you need one. Your general practitioner may just say, "This is the specialist we always refer to." On being questioned about the doctors at the regional centers they may say, "I don't know anything about them."
Sometimes you can get help in identifying really good doctors from non-medical professionals who come into contact with a lot of people who have serious health conditions. For example, physical therapists, acupuncturists, and pharmacists. These people see the results of various doctors' treatments.
Friends and even Facebook friends who live in your area can often be very helpful too. Just remember, don't ever take a recommendation from a friend seriously unless that friend has had a serious health condition. People who aren't sick often recommend doctors whose greatest strength is their pleasant personality. When someone with diabetes refers you to their doctor, ask them about the treatment they receive. Does their doctor just prescribe the latest, expensive drugs or if they are taking a more thoughtful approach? Ask what blood sugars their doctor is telling them to aim for. Ask them, too, whether their doctor lays down the law or is more open to listening to them when they want to try something.
Sometimes a "Bad" Doctor is Good Enough
If you, like many of us, have limited access to truly good doctors, it is possible you can get by just fine with a doctor who is not all that talented. The key issue here is how well you understand your condition. If you are newly diagnosed, you do need a very good doctor. But if all you need a doctor for is to write you the prescriptions you want to try, you don't need an expert. You just need someone who is willing to work with you and write those prescriptions.
The key thing here is to be realistic about how well you understand your condition. If you don't have much grasp of science--for example if you can't understand the prescribing information for a drug you want to try, you will need a good doctor.
If you have gotten all your information about diabetes from one book that promises that you can cure all that ails you with a single, simple approach, you also need a very good doctor. The world is full of very bad doctors writing very bad books for very good money. Unless you have read five books about diabetes written by doctors prescribing five different approaches, you probably are better off with the help of a very good doctor if you can find one.
But if you are one of us engineer types, and enjoy reading the books, posting and reading on support boards, trying careful experiments, logging your results, and doing all the work it takes to become a "do it yourself" diabetes expert, a helpful doctor who doesn't really know much about diabetes may suffice.
Consider Seeing a Diabetes Educator
If you aren't getting what you need from diet and diabetes drugs the answer is almost certainly insulin. But family doctors do not have the time to teach patients diagnosed with Type 2 how to use insulin. So often when you are prescribed insulin you are given ineffective doses that don't give you the control you need to stay healthy.
People with Type 1 are sent to people who specialize in teaching them how to use insulin. These people are called Diabetes Educators. They are different from the nurse that your family doctor may hand you over to who teaches you how to inject Diabetes Educators are certified and must have extensive experience that your doctor's nurse probably doesn't have. If you are having trouble with high blood sugars despite an insulin it is worth demanding that your doctor send you to a Diabetes Educator. They should teach you how to use meal time insulin to match the carbohydrates in your meals and how to adjust your doses of basal insulin. Once you understand the principles of using insulin properly you should be able to get much better control.
When You Can't Find The Doctor You Need
If your only access to doctors is through a rigid, deficient national health service or an employer-sponsored plan that limits your access to any but their own doctors there are still some helpful strategies that people who have written to me have found useful.
Be a Squeaky Wheel
Be persistent. Don't be polite. Raise your voice. Keep making appointments. Whittle down your demand to the one essential thing you need--whether it be an insulin prescription or a referral to a different doctor or a specialist. Figure out exactly what your one essential demand is and keep demanding it until the doctor, just to get rid of you, gives in. This happens more than you would expect.
Few of us have been trained to pitch fits to get what we need and most of us pride ourselves on our good manners. But my own experience has been that sometimes you have to scream at the receptionist to get that vital appointment they have insisted is impossible to schedule. Sometimes you have to yell at the doctor to get to see a different doctor who is more competent. And sometimes you have to write letters or even storm into the offices of the person running the whole operation to get what competent doctors would have given you without pressure.
So if you really need help, don't wait politely to be given it. Demand it. You're paying for it, whether through your insurance premiums or your taxes. The doctor is being paid to treat you with the expectation that they will provide you the care you deserve.
Support For Those Who Need Financial Help
If lack of money or insurance is keeping you from seeing the doctors you need local social service hotline may be able to point you to doctors who will see you for free.
If you think you may have autoimmune diabetes, tell them you think you have Type 1 Diabetes and ask them to point you to emergency help that should be able to you a diagnosis and the care you need.
There are also so-called compassionate care programs run by the big insulin companies that will help you pay for the prescriptions you need if you are financially limited.
Sites like NeedyMeds.org may also point you to helpful resources. You can find links to the patient assistance departments of many diabetes drug makers HERE
The Nuclear Option: Go Fund Me
If you are trapped in a situation where you can't see a good doctor but have insurance that prevents you from taking advantage of compassionate programs you may have to go outside the system and pay what it costs to see a true expert.
This will be expensive and it may be appropriate to turn to crowd funding help to pay for it.
Remember, though, you only get one chance to try this approach, and there are a lot of people with serious health issues competing for the dollars you are asking for. So it important not to exercise this option until you have exhausted all other options. But it is possible to raise money to pay for the specialist appointments you need through the web fundraising source Go Fund Me.
The appropriate time to invoke this solution is when your A1c has been over 8% for many months, though you've taken all the safe drugs your doctor will prescribe, and tried a ketogenic diet. If at that point you still have high blood sugars that are getting worse and the only doctor you can see keeps shrugging and saying, "Give it time," do the research to find a true expert endocrinologist who will help you and then start your campaign.
Be Careful if You Are Desperate
Before you resort to crowdfunding, make sure that what you are paying for is true helpful medical treatment. Too many people with chronic disease fall prey to shysters who charge huge amounts for worthless treatments.
Be Wary of Quacks and Shysters
Do not fall prey to the temptation to spend your money on "alternative practitioners" you find on the web who promise some cure that they claim you haven't heard about because mainstream doctors are trying to suppress it to keep their jobs. This claim is very effective in enriching shysters but is NEVER true.
Quacks pay for very effective marketing campaigns that make them sound very legitimate. Many will appear compassionate and only interested in helping you--for a hefty price.
For example, there is currently no stem cell treatment for diabetes anywhere in the world that is effective. Some stem cell treatments are so dangerous they can ruin your life. Don't let anyone talk you into raising the tens of thousands of dollars these scam treatments cost. There are real stem cell treatments being studied in research projects, but none are at the point where they are appropriate for general use
Do not let any doctor talk you into getting "free care" by participating in a clinical trial for any new drug for diabetes.
There are no drugs currently under development for diabetes that would be worth taking the very real risks such trial present. The drugs under development are all quite dangerous, while there are far less dangerous, proven treatments, like properly-prescribed insulin that work well.
Be careful verging on paranoid about any supposed cure or miracle supplement you hear about in social media.
Companies selling these products hire people to post on social media, often under dozens of different names each with its own made up persona.
Health-related products on Amazon are often reviewed by paid reviewers, too. Click on the profiles of many 5 star reviews for many supplements and you will see that the reviewer reviewed 30 or 40 other products over the past week, after never before posting a review. Often they never again posted reviews after posting those 30 or 40 (paid) reviews.
Mainstream medicine can and does treat people with every form of diabetes very well--you just have to find the doctors who know what they are doing.
It Can Be Done and You Can Do It
I want to finish this page by telling you that though I do hear from a lot of people whose doctors are failing them, in almost every case after I have corresponded with them, I hear from them a few months later and what they have to tell me then is that they have been able to get the help they need. This applies to those trapped in closed provider systems, those with incompetent doctors, and those with mysterious symptoms and elusive diagnoses.
Sometimes they have to see more than one doctor to get the help they need. But when people persist they get that help.
You can too!