(Those of you that are from New Zealand will understand this ad, for others, it’s about the “Yeah Right”. Basically, it means what is on the left, is a complete fabrication.)
I belong to several on line support groups for Adrenal Insufficiency (Addison’s Disease) to both help others with Adrenal Insufficiency (AI) and to get assistance with questions Derek and I have about AI.
One thing that annoys many who have struggled to get a true diagnosis, and the correct treatment for AI once diagnosed, is the people that post that they had AI, diagnosed by this herbalist, or that naturiopath, or some Dietitian with a Dr in front of their name and even once by a chiropractor. None of these people have access to the correct blood tests for a definitive diagnosis of either SAI or PAI. They then tell everyone how they have had this miraculous cure by neck manipulation, taking this herbal mixture, or that vitamin concoction, or eating this menu of food. They then try to convince those who have the condition, to stop their steroids, take these natural cures, and they will be cured. “Here, read this, it will fix you.”
If you truly believe you have this condition, go to the UK Addison’s Disease Self Help Group for a fantastic resource on how to get diagnosed, and treated. Some people have difficulty finding a Dr that understands blood tests enough to correctly interpret the results, or that put their symptoms down to anorexia, depression, psychosis etc.
Here I am talking about, those who come in asking about everyone elses symptoms, so they can copy them, to make it sound like they have the condition.
I have also had people come to me personally and tell me that they heard about a natural cure for AI.
Some of the sites they refer you to look like genuine medical sites. They even claim to be by Dr’s.
And that is not to say that the “Dr’s” don’t have a Doctorate. One particular one has a Doctorate, but in fact it is in nutrition. But he has developed a great, natural cure for AI. He is not a medical practitioner, can not do blood tests (and does not recommend blood tests). He is a multimillionaire by selling “snake oil” aimed at those with “Adrenal Fatigue”. Unfortunately people thing that Addison’s is simply Adrenal Fatigue and can be cured naturally.
Another such site was posted on one of the support groups recently. Not to encourage us to use the cure, but in share frustration that the member posting it, had yet again been told that they can stop taking steroids, and just eat natural herbs, vitamins, and other cures.
I have also heard someone was told that they could go through a IVIG (immunoglobulin exchange) and they could stop their steroids because fixing the immune system would fix the already damaged Adrenal Glands. Fixing the immune system is great, and can stop an inflammatory attack from doing further damage (it even be used during CAPS), but it will not repair the damage already done.
AI does not only last while you are suffering an attack by your immune system, it is the resultant damage. Even once the attack is over, the damage is permanent.
Sadly some people believe these sites, and can end up in Hospital, fighting for their lives.
The cure this week: Vitamins, Liquorice and Green Tea. (Warning Signs Of Adrenal Insufficiency And Natural Methods Of Treatment)
The issue I have with this one isn’t taking vitamins, it isn’t eating liquorice, or drinking green tea. All of things, in moderation, can be good for you.
The issue is people miss quote research, meaning their solutions can be dangerously wrong.
This study looked at the effect of Grapefruit Juice and Licorice on Cortisol.
Conclusion Licorice and in particular GFJ increased cortisol available to tissues in the hours following oral CA administration. Both patients and physicians should be aware of these interactions.
The most important thing about this study (which is what people use to say stop the cortisol and start eating licorice) is that it helps prolong the life of the cortisol in your body.
This sounds great, but it has been shown that over eating of such things as licorice WILL cause other medical conditions especially in Addisonians. The reason. Addisonians (especially primary) suffer from high potassium which must always be kept under control and licorice can increase your potassium levels.
The catch? To help extend the life of cortisol in the body, you must first HAVE cortisol in the body. Addison’s Disease/Adrenal Insufficiency means you no longer naturally produce cortisol. What you have in your body is what you take via replacement therapy. With secondary AI you may actually produce a little, but not enough to live. It doesn’t matter if you don’t have a math degree, you should still know that 0 x anything will still be 0.
Are you getting the point yet?
You can’t increase the effect of something you don’t have. For this particular website to say you should stop taking steroids and start taking their “cure” is actually dangerous.
Education doesn’t always work
As said earlier, I have very recently been the victim of this myself. I spent some time explaining to someone, the problems with Adrenal Insufficiency, what it was, what Derek had to take to stay alive.
I have now been told twice by this person that natural treatments will fix Derek. I should get him off all his medication, and give him “Adrenal Support”, which I discovered when I looked up the product I was told about, was in fact animal adrenal glands with other herbs and vitamins.
Wow, if only. Unfortunately this was the “cure” from 1890’s to 1950’s when they found Hydrocortisone allowing Addison’s sufferers to actually be able to get out of bed (although some still can’t), a lucky some to work, and if lucky (and the medical profession don’t kill you first) to live a longer life.
I am sure I have said before, hydrocortisone is not a Cure for Addison’s disease. There is no cure. Hydrocortisone and fludrocortisone are what is currently used to keep the Addisonian Patient alive. The average Life expectancy is now found to be reduced on average but a lot longer than in 1942 when it was still less than 2 years and where if you had to have surgery, got an infection or even a tooth extraction, it would probably kill you.
Why, oh why, would anyone go backwards to “natural cures” that would if you were really lucky, keep you alive (but in bed and in pain) for no more than 2 years over the synthetic hydrocortisone that is available today.
If you are reading this please DO NOT tell your friend who has Adrenal Insufficiency, either primary or secondary, that you have read about a cure. You will only achieve 2 things.
- The loss of a good friend (if they were one to start with)
- Manage to make yourself look stupid.