New confused diabetic

In nursing school near the end of 1989 I went from a high fat, low carb diet to a high carb, low fat diet recommended in a nutrition class. I gained 20 pounds in a matter of months, and the next year gained weight faster than my wife when she was pregnant. I didn't question authority. But my weight went from 180 to as much as 270 pounds. My blood glucose levels got quite high by 1992, and I had the sense to cut out processed sugars and starches, which caused my weight to drop 20 pounds in a month and get blood glucose levels to the normal range. But I was still trying to follow the low fats dietary advice. I tried out the south beach diet and later took the trouble to read Dr. Atkins Diet Revolution. I started a low carb diet in late 2003 and got my weight down to 190 pounds by 2009.

I recommend writings by Gary Taube, a science writer who got interested in the high carb vs. low carb when investigating low sodium diets recommended by doctors for hypertension. Unless someone renal function was impaired, the low sodium diet had no impact. Sodium levels are hormonally regulated, and one hormone with an impact was insulin. That led to looking into how diet can impact insulin and the role of insulin in fat accumulation. It has long been known that insulin is necessary for fat accumulation. The hypothesis that dietary fat makes you fat, advance by Ansel Keyes of the University of MN, was initially disputed by the AMA, later endorsed. What was know about insulin as a hormone that promotes fat accumulation has been forgotten.

I have consulted with many endocrinologists, and most recommend a high carb, low fat, low calorie diet. I lost my respect for that profession, at least in the US, but not only because of dodgy dietary advice I had received. I had documented thyroid storms beginning in 1979. T4 and T4 levels were high, then dropped to borderline low, then rose and plateaued, then another storm, and so forth. The high and low end reading were falling. The effect left me disable within several years. Consults with endocrinologists were pointless. No one offered any treatment. I hunted through the card catalog at the U of MN medical library in search of journal articles concerning treatment of thyroiditis, and eventually found one by a doctor who had newly diagnosed patients take a 325 mg tablet of Aspirin daily, and saw symptomatic improvement. Patients referred to psychiatry were weaned successfully from psych medications. He then had many patient who had long been disabled try the daily aspirin regime, and most of the saw huge improvements. Most patients on psych medications were successfully weaned from those medications. I tried it out, and within a few month the chronic low grade fever and fatigue went away. I went back to school, studied practical nursing and started working in that field

In 1989, one the eve of starting nursing school, I consulted an endocrinologist who was trained in Germany. She didn't only answer questions, but volunteered some information and encouraged me to educate myself. She did a thorough work up and looked at recorded thyroid labs and expected that I would need thyroid replacement therapy in about 5 years. She was right, but had moved to Florida (which I didn't know until many years later) I could not find an endocrinologist or any doctor willing to treat because my TSH wasn't high enough. By 1997 I had extraordinarily dry skin, very thick, deeply fissured callouses on my heels, and frequent external auditory ear canal infections. An Eye Nose Throat doctor said that this was an endocrine problem, and endocrinologist saw no problem.

By early 2000 I had to cut back to part time work because of fatigue and episodes of high blood pressure if I tried to work more than 3 days per week. By 2003 I was beginning to see myxedema, which began fairly severe by the end of the year. While on a coronary care unit because of a hypertensive episode a resident dismissed my concern about hypothyroidism, and told me that there is no such thing as myxedema, though "myxedema coma" is a valid medical term. I had read about myxedema in medical reference books and medical and nursing textbooks from the 1950s when I worked at a nursing home as a nursing assistant in the 1970s. I saw examples of myxedema, including severe myxedema in a patient who was not being treated for severe hypothyroidism because of insurance and prescribing rules. The idea behind deleting myxedema as well as hypothyroid heart disease (or Hypothyroid Heart Failure) was that doctors would never see it because of a cheap, commercially available test for serum thyroxin levels. Hypothyroidism would be treated early and effectively, and late stage symptoms would never emerge, except in rare cases where the thyroid gland was damaged and surgically removed, and in those cases the myxedema would be quickly reversed. I finally got treated in February 2004, not because severe myxedema and cardiovascular symptoms, but because I saw a primary care doctor who was aware that guidelines for the diagnosis and treatment of hypothyroidism allowed treatment in the presence of symptoms and if TSH was above 2.5. My level was about about 3.0. The doctor refused to order baseline T4 and T3 levels and until pretty well into the therapy, and they were borderline low at that point.

More recently, changes in guidance for doctors allowed my primary doctor to shift from thyroxine to liothyronine replacement because of peripheral neuropathy and signs of hypothyroidism apparently related to poor peripheral conversion of T4 to T3. I recently saw a endocrinologist for another issue, and he did not approve of using cytomel. Thyroxine is the standard, etc. I told him that I don't want an endocrinologist in charge of thyroid replacement therapy or anything else, if I can help it.

For the foregoing reasons, I don't trust endocrinologists, except maybe one who was trained in Germany. Based on what I have read on Mayo Clinic web site, I wouldn't expect to see anything radically different at Mayo than I have seen elsewhere. For example, the term myxedema is used to connote myxedema coma and not the edema one sees in late stage hypothyroidism. Doctors see a lot of myxedmea in women over 50, but have no idea what it is. Hypothyroidism is often not diagnosed until it is late stage because of misplaced confidence in blood tests to diagnose and treat hypothyroidism. I have also seen obesity described as a consequence of overeating and under-exercise and not as the result of a hormonally regulated process of fat accumulation. In my opinion, diet and exercise have effects on hormones that regulate fat accumulation, and what you eat is more important than how much you eat.

@vanin11
I think part of the problem is thinking that a forum like this one has all the answers, can diagnose, and treat diseases, especially diabetes. I really desperately wanted that also. But, when I was diagnosed by my PCP, I found out fast that not all doctors even know about diabetes enough to treat it. I went to an endocrinologist and got some answers. He sent me to a dietician who was no help at all. The main problem is that all people are different. Think about gender, age, other health issues, different medicines, mobility, weight, genetics, and on and on. There is no definitive answer for what to do when someone has diabetes.

Every day for me is different. Some days my blood is in range and some days it is not. I do not know why the discrepancy exists. I always just wanted to go to the dr., get a sheet for what I should do, do it, and be fine. Well, that was pipe dreaming; it did not happen. So, I ordered the Mayo Clinic Diet book and other info from Mayo and joined this forum. I am doing well and don't have to take any meds; I prefer to try to control by diet and exercise, although I am not a lover of exercise. I try to be careful with what I eat, but there are times when I get hungry and want something different, so I might eat more than the allowed portion. I have found for me that mostly vegetables work best. I eat some meat; mostly chicken and beef only once a week. I came to that through experimenting.

Being diagnosed with a disease is like a death: there are stages we probably all have been through. I was so mad at first and went through the cycle until I accepted that this is the way it is. I now try to do the best I can with my health and stay in touch with this forum. There are people on this forum that have dealt with diabetes for many years; some of us are rather new. (I was diagnosed less that two years ago.)The information I've read from people on this site has helped me. Sometimes a suggestion works for me and sometimes not. It's trial and error.

I hope you can get the answers you want. Make peace with what's going on and try to accept it.

Good luck,
retiredteacher

@valb68, I want to invite you, and introduce you to this discussion where others have shared their own experiences and new and confused diabetics.
Please feel free to read thru the conversations and ask any questions that you might have.
Rosemary

The diabetes info is very interesting. I was not familiar with the "dawn phenomenon" ; however, my confusion is due primarily to the fact that I have stage 4 kidney disease also, and the two diets rad
radically oppose each other in many ways. I need to set up another appt. with dietitian/nutritionist to get on track.

I have Found if you don’t eat at night your numbers come down in the morning.
If you can eat by 4:00 PM you have 4 Hrs to get your sugars back down before you go to bed .