Porphyria and Adrenal Fatigue
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Porphyria and Adrenal Fatigue
Hi,
Even if I'm doing quite well, no D since July 2015, I'm still very tired and have low energy. So, I wanted to check my "nutritional status", given the fact that I've been on a strict diet since April 2013, which is GF and DF for 3 years, and Soy and Egg free for the last 8 months. I make all meals from scratch, no additives etc. A lot of work, so I thought maybe I could start introducing new food into my diet.
I went to see a new doctor, who is a doctor of orthomolecular medicine. He was openminded, very young, and asked a thousand questions (even if I had answered all kinds of questions online prior to the appointment, regarding sleep, food, intolerances, mood, BMs, etc etc).
For the first time since the 80's I had to undress at a doctor's appointment.. You know, doctors hardly look at their patients, let alone touch them nowadays. The first thing he said was "I'm going to look at your toenails"... After having been weighed, measured, tapped on my back and stomach (as I remember doctors used to do), he asked the permission to take a picture of my toenails, and showed me his iPhone, with several pictures of patients' toenails, and asked me if I could spot a common factor between the nails.
Like most people, I don't like toenails, so I hardly looked at his cell phone. Then he pointed out that all these patients had a brown line just beneath the white top of their tonails, and then I had to look, and he was right.
He said he suspected adrenal fatigue and porphyria. I have heard of the first one, but the latter is quite unknown to me.
I will have to wait 4 weeks due to Easter Holidays etc, to get the results of the blood tests and the 24-hour urine test, to know the result.
He tried to explain via a picture of the hypothalamus which produces pituitary ACTH, and if this production fails it may cause adrenal fatigue.
Have any of you been in touch with porphyria or heard of what symptoms and what treatment it involves?
Lilja
Even if I'm doing quite well, no D since July 2015, I'm still very tired and have low energy. So, I wanted to check my "nutritional status", given the fact that I've been on a strict diet since April 2013, which is GF and DF for 3 years, and Soy and Egg free for the last 8 months. I make all meals from scratch, no additives etc. A lot of work, so I thought maybe I could start introducing new food into my diet.
I went to see a new doctor, who is a doctor of orthomolecular medicine. He was openminded, very young, and asked a thousand questions (even if I had answered all kinds of questions online prior to the appointment, regarding sleep, food, intolerances, mood, BMs, etc etc).
For the first time since the 80's I had to undress at a doctor's appointment.. You know, doctors hardly look at their patients, let alone touch them nowadays. The first thing he said was "I'm going to look at your toenails"... After having been weighed, measured, tapped on my back and stomach (as I remember doctors used to do), he asked the permission to take a picture of my toenails, and showed me his iPhone, with several pictures of patients' toenails, and asked me if I could spot a common factor between the nails.
Like most people, I don't like toenails, so I hardly looked at his cell phone. Then he pointed out that all these patients had a brown line just beneath the white top of their tonails, and then I had to look, and he was right.
He said he suspected adrenal fatigue and porphyria. I have heard of the first one, but the latter is quite unknown to me.
I will have to wait 4 weeks due to Easter Holidays etc, to get the results of the blood tests and the 24-hour urine test, to know the result.
He tried to explain via a picture of the hypothalamus which produces pituitary ACTH, and if this production fails it may cause adrenal fatigue.
Have any of you been in touch with porphyria or heard of what symptoms and what treatment it involves?
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
There are multiple causes of adrenal fatigue - most of which are related to key nutrient/mineral deficiency - and it can be linked to methylation cycle issues
My chiro/kinesioligist was telling me today she met a Chiro/kinesiologist who was high end, treating professional athletes etc, working 80 hours a week, doing triathlons etc, his adrenals got so burnt out, he started going deaf! it took him 2 years to recover, he used diet and liquid herbs.
my experience thus far is that adrenal fatigue is not a root cause condition, it is a symptom of other issues (there are LOADS of practitioners writing articles and doing podcasts on this subject)
I have never heard of porphyria being linked to adrenal fatigue (not saying that it isnt)
cutaneous porphyria Treatment may include:
Oral administration of activated charcoal, which helps to absorb excess porphyrins
Daily supplementation with beta-carotene (vitamin A) as part of long-term treatment.
For Info - from my nutrient bible - nutrients for Adrenal Exhaustion
B5, C, Potassium, Manganese, Magnesium, Copper, Tyrosine
(My adrenals improved big time when I fixed Magnesium and Vit C deficiencies and inflammation / chronic symptoms levels reduced)
My chiro/kinesioligist was telling me today she met a Chiro/kinesiologist who was high end, treating professional athletes etc, working 80 hours a week, doing triathlons etc, his adrenals got so burnt out, he started going deaf! it took him 2 years to recover, he used diet and liquid herbs.
my experience thus far is that adrenal fatigue is not a root cause condition, it is a symptom of other issues (there are LOADS of practitioners writing articles and doing podcasts on this subject)
I have never heard of porphyria being linked to adrenal fatigue (not saying that it isnt)
cutaneous porphyria Treatment may include:
Oral administration of activated charcoal, which helps to absorb excess porphyrins
Daily supplementation with beta-carotene (vitamin A) as part of long-term treatment.
For Info - from my nutrient bible - nutrients for Adrenal Exhaustion
B5, C, Potassium, Manganese, Magnesium, Copper, Tyrosine
(My adrenals improved big time when I fixed Magnesium and Vit C deficiencies and inflammation / chronic symptoms levels reduced)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you, Gabes!
I don't think that adrenal fatigue is easy to treat, but there is a lot of information on the internet, treatment suggestions etc, and the disease is easy to understand and there are things one can do to get better.
However, this porphyria thing freaked me out a little. We are already familiar with diets and supplements, so hopefully this one is also manageable.
Lilja
I don't think that adrenal fatigue is easy to treat, but there is a lot of information on the internet, treatment suggestions etc, and the disease is easy to understand and there are things one can do to get better.
However, this porphyria thing freaked me out a little. We are already familiar with diets and supplements, so hopefully this one is also manageable.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
- jessica329
- Adélie Penguin
- Posts: 214
- Joined: Thu Oct 11, 2012 6:47 pm
- Location: CT
Jessica,
Adrenal fatigue is not an acknowledged medical diagnose, at least not in my country.
There seems to be a range of tests one has to take in order to confirm whether a person suffers from adrenal fatigue or not.
I found this article, but there is a lot of other information on the internet.
http://adrenalfatiguesolution.com/testi ... l-fatigue/
Lilja
Adrenal fatigue is not an acknowledged medical diagnose, at least not in my country.
There seems to be a range of tests one has to take in order to confirm whether a person suffers from adrenal fatigue or not.
I found this article, but there is a lot of other information on the internet.
http://adrenalfatiguesolution.com/testi ... l-fatigue/
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Jessica
the best way to confirm adrenal fatigue is via Saliva tests - 24 hour process at various times of the day.
As Lilja mentioned, in most countries this is not an acknowledged condition by mainstream medicine, you will need to align with a functional practitioner to do the test and get the results.
a good resource for info is Evan Brand, not just Paleo (podcasts and website - free book downloads from his website) he recovered from adrenal fatigue. another good resource is Dave Asprey, Bulletproof radio (podcasts and website)
the best way to confirm adrenal fatigue is via Saliva tests - 24 hour process at various times of the day.
As Lilja mentioned, in most countries this is not an acknowledged condition by mainstream medicine, you will need to align with a functional practitioner to do the test and get the results.
a good resource for info is Evan Brand, not just Paleo (podcasts and website - free book downloads from his website) he recovered from adrenal fatigue. another good resource is Dave Asprey, Bulletproof radio (podcasts and website)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I agree with Gabes here. I checked out porphyria and going from nail issues to porphyria seems a stretch. For what it's worth, I have nail issues too but there has definitely been improvement since I cleaned up my diet.Gabes-Apg wrote:Lilja
after doing some reading I had a thought that the guy may have been a bit over the top about the porphyria.
there are lots of explainations for nail issues (mostly nutritional imbalances/deficiencies)
Jean
Gabes-Apg wrote:Lilja
after doing some reading I had a thought that the guy may have been a bit over the top about the porphyria.
there are lots of explainations for nail issues (mostly nutritional imbalances/deficiencies)
Maybe I was a bit unclear, but the nail issue was linked to adrenal fatigue, not the porphyria.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Jessica,
The Cortisol/DHEAS Saliva Test that Gabes mentioned measures the levels of the stress hormones DHEAS and cortisol in one's saliva, and provides an evaluation of how cortisol levels differ throughout the day (compared with normal patterns).
The lab at the links below is the lab that many of us use to check our vitamin D levels.
Adrenal Stress and Hormone Balance
Saliva Testing Questions
Tex
The Cortisol/DHEAS Saliva Test that Gabes mentioned measures the levels of the stress hormones DHEAS and cortisol in one's saliva, and provides an evaluation of how cortisol levels differ throughout the day (compared with normal patterns).
The lab at the links below is the lab that many of us use to check our vitamin D levels.
Adrenal Stress and Hormone Balance
Saliva Testing Questions
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Gabes and Tex,
I'm reading through some old posts, and notice that I have not answered this one, let alone said "thank you". So, thank you!
The test results from April were:
24-h urine free cortisol was 119 (ref area 45-272)
Serum DHEA-Sulphate was 2.8 (ref area <7,5
Doctors here in Norway are not allowed to prescribe hormons to control cortisol, nor DHEA unless the levels are life threatening, so the real sick people travel to this clinic in Brussels http://www.hertoghe.eu/en/
Travel, consultation, medications etc amount to USD 5.000.- the first time you go there. Then you have to follow up each 3. month the first year, and after that you only go to Belgium once a year.
Since this is very costly, I wonder if there is anything I can do myself to raise the cortisol level other than living a regular life, enough sleep, good nutrition, avoiding stress, etc?
Thanking you in advance,
Lilja
I'm reading through some old posts, and notice that I have not answered this one, let alone said "thank you". So, thank you!
The test results from April were:
24-h urine free cortisol was 119 (ref area 45-272)
Serum DHEA-Sulphate was 2.8 (ref area <7,5
Doctors here in Norway are not allowed to prescribe hormons to control cortisol, nor DHEA unless the levels are life threatening, so the real sick people travel to this clinic in Brussels http://www.hertoghe.eu/en/
Travel, consultation, medications etc amount to USD 5.000.- the first time you go there. Then you have to follow up each 3. month the first year, and after that you only go to Belgium once a year.
Since this is very costly, I wonder if there is anything I can do myself to raise the cortisol level other than living a regular life, enough sleep, good nutrition, avoiding stress, etc?
Thanking you in advance,
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Lilja,
Your lab results look good, so I don't understand why you would want to increase your cortisol levels.
Increasing cortisol by natural methods (or by any methods, for that matter) can be tricky, because many of the herbs used to regulate cortisol can either stimulate production or suppress it, depending on prevailing conditions. But if you want to try to increase your cortisol level, eating grapefruit or other citrus fruits will break down enzymes that limit cortisol production. If you eat it regularly it can help your adrenal glands to boost cortisol production.
The problem of course is that many of us are sensitive to citric acid in larger quantities. And if you read my pancreatic cancer book after I finish it you will see that fructose is one of many foods that significantly boosts the risk of developing pancreatic cancer,
The glycyrrhizin in licorice also inhibits the enzyme that breaks down cortisol. It's considered to be reasonably effective at boosting cortisol levels. But rather than eating the candy, look for licorice herb suppplements or glycyrrhizin supplemlents in tablet or capsule form.
If you're just dealing with low energy or fatigue, maybe you're just low on iron.
There are other herbs that can be tried, but as I mentioned above, these can have opposite effects, depending on conditions.
http://www.livestrong.com/article/42305 ... sol-level/
Tex
Your lab results look good, so I don't understand why you would want to increase your cortisol levels.
Increasing cortisol by natural methods (or by any methods, for that matter) can be tricky, because many of the herbs used to regulate cortisol can either stimulate production or suppress it, depending on prevailing conditions. But if you want to try to increase your cortisol level, eating grapefruit or other citrus fruits will break down enzymes that limit cortisol production. If you eat it regularly it can help your adrenal glands to boost cortisol production.
The problem of course is that many of us are sensitive to citric acid in larger quantities. And if you read my pancreatic cancer book after I finish it you will see that fructose is one of many foods that significantly boosts the risk of developing pancreatic cancer,
The glycyrrhizin in licorice also inhibits the enzyme that breaks down cortisol. It's considered to be reasonably effective at boosting cortisol levels. But rather than eating the candy, look for licorice herb suppplements or glycyrrhizin supplemlents in tablet or capsule form.
If you're just dealing with low energy or fatigue, maybe you're just low on iron.
There are other herbs that can be tried, but as I mentioned above, these can have opposite effects, depending on conditions.
http://www.livestrong.com/article/42305 ... sol-level/
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thank you, Tex!
And thank you for the link regarding herbs to raise cortisol.
Maybe I should be content and relax a bit, not trying to get it all "perfect", and above all not believe everything I read and hear. After all I'm so so much better than I was when I joined your board.
Lilja
And thank you for the link regarding herbs to raise cortisol.
Maybe I should be content and relax a bit, not trying to get it all "perfect", and above all not believe everything I read and hear. After all I'm so so much better than I was when I joined your board.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
I noticed something the other day about a finger nail.
I've seen greatly improved energy levels the last few weeks. It's to the point that I find myself fidgeting and moving around all the time. What helped me was to change my diet up further. I felt there likely was a hidden food allergy. So far I'm enjoying the results.
What I noticed also is that a finger nail has greatly improved. On my left hand, on the ring finger, the nail would be pitted and generally in poor shape. i noticed now that I'm feeling much more energetic, the finger nail pitting has gone away. The finger nail appears quite normal at this point.
I'd like to say with certainty I know what the hidden food allergy is. It's a work in progress but have some clues.
Best of luck in finding answers to what is behind your nails and fatigue problems.
I've seen greatly improved energy levels the last few weeks. It's to the point that I find myself fidgeting and moving around all the time. What helped me was to change my diet up further. I felt there likely was a hidden food allergy. So far I'm enjoying the results.
What I noticed also is that a finger nail has greatly improved. On my left hand, on the ring finger, the nail would be pitted and generally in poor shape. i noticed now that I'm feeling much more energetic, the finger nail pitting has gone away. The finger nail appears quite normal at this point.
I'd like to say with certainty I know what the hidden food allergy is. It's a work in progress but have some clues.
Best of luck in finding answers to what is behind your nails and fatigue problems.