Monday, 22 February 2016

The internet knows way more than your doctor. Here's proof.

There is an extremely limited amount of information available to endocrinologists in the peer-reviewed literature on rare diseases such as Type 2 polyglandular autoimmune syndrome. Mostly your doctor will base their recommendations on what they know about diabetes and Addison's separately, ignoring the interaction between the two conditions. They often fail to take into account the fact that fluctuating glucocorticoid levels typical of standard Addison's treatment play havoc with blood glucose control.

What does your endo know?

Here is the typical spiel from a large textbook on internal medicine, complete : ".hydrocortisone dosage usually should not be >30mg/day: otherwise, insulin requirements are increased. It is often difficult to completely control hyperglycemia in this syndrome."
Not very reassuring is it. No comment on different drug regimens or the clinical outcome of each.

If your doctor is extremely conscientious, they may search the ncbi database of medical literature for specific articles on the combined conditions. Here is how little they will find.

1. Type 1 diabetes and polyglandular autoimmune syndrome. A review. Lots on diagnosis and theory. Nothing on treatments and outcomes.

2. case report. Pt given cortisone acetate tds. No outcome described.

3. No treatment or outcome described, but interestingly, of the 24% of Addison's only patients who did not take HC as their only glucocorticoid, the commonest treatment was a combination of pred and HC.

4. Single case report. Outcome not reported.

5. , 6, 8, 9, 10, 12, 13 Lab research. No clinical info

7. Single case report. went on HC. Able to work again, re-gained drivers licence. thats it.

11. four patients diagnosed. No treatment of outcomes described.

14. Immunologic endocrine disorders . Clinical , No treatment of outcomes described.

15 No relevance

16. Not diabetes related, but interesting in that is describes as useful a low GI, high fat dietary approach to a complication of Addison's!

17-27. Lab data

28. A second paper on hypoglycemia in Addison's disease. Due to fluctuating HC levels!!! Admits "unphysiological dosing with orally available glucocorticoids. Recommended "Shifting the last hydrocortisone dose to the late evening.." CGM used.

 All others up to 40. No useful treatment or outcome data.

That's the top 40 papers, and more than a thousand pages of pdf on my computer. Pitifully deficient in useful clinical information, isn't it. If you have a polyglandular syndrome you would like to see at least a moderate number of patients tried on different treatments and outcomes recorded. Sorry to disappoint you, but your doctors' scientific resources are not even close to that.

Yes, an extremely obsessive doctor with lots of free time will be able to dig up a few extra cases, but even with those, the total sum of the peer-reviewed literature contains less useful information for me than my own experience with various combinations of treatment.

Soon, lets look at the wealth of information on the internet from actual patients (apart from myself) who have tried lots of different approaches, for long periods of time, and described their outcomes.