Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Need your help Molly with some research

Need to find as much info about Adrenal Cushings Syndrome, Hereditary Fructose Intolerance, and how they elevate liver enzymes. Hoping to get into seeing a Endrocrinologist in Montreal. (Dr. Andre Lacroix)

According to my last Cortisol test - I should be a shoe in for Adrenal Cushings Syndrome. Anything over 50nM on a Saliva test, you would be diagnosed with Cushings. My last test results showed my reading to be 60nM.

Until diagnosed (another rare diseases), I sit back and wait for diagnoses.

Hugs
Gerri

OK hon - Just picked this up now. Will get to it tomorrow, in daylight as night time eyes are not much good. Should be an interestng search. (Thanks for asking me).

Have a good w'end Gerri - scritches to Makaylah.

Just fell over this - might find some useful info:

http://www.aboutcushings.com/support-groups.jsp

Your guide to
Cushing’s support groups
Encouragement, advice, and support from people living with Cushing’s syndrome
If you have Cushing’s syndrome, it can make a difference to know that there are support groups with caring people who want to help you. Many of these people have or had Cushing’s syndrome. They want to share what they’ve learned about living with this challenging condition, and let you know that you don't have to deal with it alone.

Below is a list of Cushing’s support groups, along with links to their Web sites.

Cushing’s Help and Support
www.cushings-help.com

Cushing’s Support and Research Foundation
www.csrf.net

Cushing's Understanding Support & Help Organization
www.cush.org

Pituitary Network Association
www.pituitary.org

Next, read some commonly asked questions about Cushing’s syndrome

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Specifics tomorrow Gerri. OK hon? (Stinky ole DX to be handling - strewth.)

Molly C

Gerri,

I am interested also as I am being looked at for the same thing. Have been waiting for the blood work then will decide if Im going to do the saliva test or she said take a pill and come back for bloodwork at different times.

Good idea girl,

Hugs

Thanks Molly I am already registered at most. I do appreciate your help - during daylight is good.

Looking for any other information you may find.

Hugs
Gerri (and of course kisses from Makaylah)

Hi Lisa, my saliva test two years ago showed my cortisol was high at 60nM, any thing over 50nM is a cushing diagnoses. My symptoms have worsen since then. Can't take any med to bring it undercontrol Don't know what is related to Sacriliitis or anything else I am dealing with. Really have to hear the possible diagnoses of cushings from the specialist. My NP/MD said he will put a referral into one of the best Endrocrinologist in Canada. Dr. Andre Lacroix out of Montreal. So now I wait - could take a while - having cushings with everything else is totally not good.

Another friend has been pushing me to get seen now. Cushings can be life or death. I have a cyst on left Adrenal gland - so possible looking at Adrenal Cushings Syndrome.

Oh well, nothing new for me finding these rare diseases.

Hugs
Gerri

Gerri - there are nearly 600,000 'hits'!! Have pulled a few... Many of the links were same, same - overlapping of information. Not of that much interest, reaad one read many as twere. Will do a different search now and see what I can find.

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http://www.healthcentral.com/ency/408/000407.html

Cushing's syndrome - adrenal tumor / Although they may develop in anyone at any age, adrenal tumors are more common in adults -- 70% of all adrenal tumors occur in adults. They are found in women more often than men and are relatively rare. It occurs in 6 out of every 1,000,000 people.

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Following s from Life Extension - informative and interesting overview.

http://www.lef.org/protocols/prtcl-002.shtml

Factors that May be Overlooked in Diagnosis
(snip...) "Synthetic hydrocortisone drugs (corticosteroids) became available in the late 1940s and were heralded as a miraculous treatment for rheumatoid arthritis due to their suppression of the immune system. However, it did not take long to learn that there was a serious price to pay for chronic corticosteroid use. People taking synthetic hydrocortisone developed many symptoms and physical abnormalities such as the symptoms of Cushing's syndrome, resulting from the body's overexposure to corticosteroids.

"As a result of these adverse reactions, an often irrational approach developed in the medical community to the question of relative adrenal function. A person who has total failure of the adrenal glands is said to have Addison's disease even though low steroid levels can also be caused by failure of the hypothalamus , thalamus, and pituitary areas of the brain. In this case, the adrenal glands still function. In the case of Cushing's syndrome, the disease may manifest due to physical abnormality or as the result of corticosteroid use.

"When a physician evaluates a patient relying solely upon laboratory data, the patient is considered either normal or having Addison's disease or Cushing's syndrome. There may be no analysis of other contributing factors. This protocol is directed only at the function of the adrenal glands. However, just as in thyroid dysfunction (see the Thyroid Deficiency protocol), normal laboratory tests do not exclude what some physicians refer to as adrenal fatigue (or relative Cushing's or Addisonian states).

"The association of impaired immune function and the administration of synthetic corticosteroids ha ve s blurred an important fact. Decreased levels of corticosteroids also impair immune function. What further complicates the matter is the fact that it is now thought that the continual overproduction of cortisol, not in the range that would produce Cushing's syndrome, contributes to immune suppression, atherosclerosis, brain cell injury, and accelerated aging.

Cushings Syndrome
Drugs such as ketoconazole, aminoglutethimide, or metyrapone may also be given to suppress cortisol metabolism and secretion. The European drug KH3 (the active ingredient is procaine), which can block some of the cell-damaging effects of cortisol and help protect against cortisol toxicity, is beneficial for Cushing's disease. KH3 has been also known for its beneficial effects in aging and depressed people (Cohen et al. 1974; Hall et al. 1983). A suggestion would be to take 1-2 KH3 capsules in the morning on an empty stomach and 1-2 KH3 capsules in mid-afternoon, also on an empty stomach.

Licorice / "...as a tea. It helps to reduce the amount of hydrocortisone broken down by the liver, thereby reducing the workload of the adrenal glands. "...It is best to stay with teas or supplements. "...Licorice is also a demulcent (an oily substance that reduces irritation), which makes it soothing to the digestive tract. Deglycyrrhized licorice (DGL) is made by removing the glycyrrhizin. For the adrenal effects, only real licorice should be used, not DGL.

"Long-term use of licorice containing more than 1 gram of glycyrrhizin (the amount in approximately 10 grams of licorice root) daily can cause increased blood pressure and water retention (edema) (Schambelan 1994). High doses of licorice should only be taken under the care of a qualified health professional.

Pantothenic Acid
Pantothenic acid (vitamin B5) activates the adrenal glands. It is a precursor of acetyl CoA (a part of the Krebs's cycle which produces cellular energy) and acetylcholine (a primary neurotransmitter). Pantothenic acid deficiency results in adrenal insufficiency, which is characterized by fatigue, headache, sleep disturbances, nausea, and abdominal discomfort (Tarasov et al. 1985; Smith et al. 1996; Murray et al. 1997).

L-Theanine
L-theanine is an amino acid found in green tea that produces a calming effect in the brain. It works by increasing gamma-aminobutyric acid (GABA) that is a relaxer and creates a sense of well-being. L-theanine may be taken to help modulate mood and relieve stress in many health conditions (Abe et al. 1995; Kobayashi et al. 1998; Juneja et al. 1999). (more...)

(continues with more on alternative remedies - quite interesting. Also gives links to complementary medecine and to where to purchase herbal/complementary products.)
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http://www.peoriaendocrine.com/articles/adrenal/2005_cushings_adrenal_incident_endo_cl_na.pdf

Subclinical Cushing’s Syndrome in Adrenal Incidentalomas

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http://health.allrefer.com/health/cushings-syndrome-adrenal-tumor-info.html

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http://www.ncbi.nlm.nih.gov/pubmed/15850852

Endocrinol Metab Clin North Am. 2005 Jun;34(2):441-58, x.

Bilateral adrenal Cushing's syndrome: macronodular adrenal hyperplasia and primary pigmented nodular adrenocortical disease.
Lacroix A, Bourdeau I.

Department of Medicine, Hôtel-Dieu du Centre Hospitalier de l'Université de Montréal, 3840 Saint-Urbain Street, Montreal, Quebec H2W 1T8, Canada. andre.lacroix@umontreal.ca

Abstract
Corticotropin (ACTH)-independent bilateral macronodular adrenal hyperplasia (AIMAH) and primary pigmented nodular adrenocortical disease (PPNAD) are responsible for approximately 10% of adrenal Cushing's syndrome. AIMAH also can be present as subclinical bilateral incidentalomas in sporadic or familial forms. Diverse aberrant hormone receptors have been found to be implicated in the regulation of steroidogenesis and pathophysiology of AIMAH. PPNAD can be found alone or in the context of Carney complex, a multiple endocrine neoplasia syndrome. Additionally, it can be secondary to mutations of type 1 alpha-regulatory subunit of cAMP-dependent protein kinase A (PRKARIA). Strategies for the investigation and treatment of AIMAH and PPNAD are discussed.

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http://www.ncbi.nlm.nih.gov/pubmed?term=%22Lacroix%20A%22%5BAuthor%5D

16 pages papers by Lacroix on PubMed (I always like to check out any papers written up by my/one's consultants.)
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OK now to search out 'Hereditary Fructose Intolerance'. 39,700 hits, many of which will be overlappng information. Will see first IF anythng of particular interest in this first search, before going into other searches. It is most likely that in fact you have searched all of the most pertinent information anyways!
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Hereditary fructose intolerance: Information from Answers.com
Hereditary Fructose Intolerance Definition Hereditary fructose intolerance is a metabolic disorder in which the small intestine cannot process.
www.answers.com/topic/hereditary-fructose-intolerance...

What is Fructose Intolerance? | Fructose News and Articles
Fructose intolerance refers to both hereditary fructose intolerance and fructose malabsorption. Fructose malabsorption is a condition in which intestinal ...
fructose.biz/what-is-fructose/intolerance.html

Fructose 1-Phosphate Aldolase Deficiency (Fructose Intolerance ...
24 Mar 2009 ... Within the next 4-5 years, the enzyme defect in aldolase B isozyme in the liver was demonstrated, and hereditary fructose intolerance (HFI) ...
emedicine.medscape.com/article/944548-overview

(Gerri - looks to be more paediatric than adult, as if hereditary then will be obvious when 'child takes sweets'. OK. Different search criteria - 'adult' refers.)

Adult hereditary fructose intolerance
21 May 2009 ... Lameire N, Mussche M, Baele G, Kint J, Ringoir S. Hereditary fructose intolerance: a difficult diagnosis in the adult. Am J Med. ...
www.ncbi.nlm.nih.gov/pmc/articles/PMC2684612/

[PDF] TWO CASES OF HEREDITARY FRUCTOSE INTOLERANCE ...
(1991) Adult hereditary fructose intolerance. Arch. Intern. Med. 151(4), 773-6. 7. Montgomery, Conway, Spector. Biochemistry: A case oriented approach. ...
http://www.ncbi.nlm.nih.gov/pubmed/6680153

(see also related citations and pubMed Central Articles - right hand side.)

Hereditary fructose intolerance: A difficult diagnosis in the ...
Hereditary Fructose Intolerance: A Difficult Diagnosis in the Adult NORBERT LAMEIRE, M.D. MONIQUE MUSSCHE, M.D. GASTON BAELE, M.D. JOS KINT, Ph.D. SEVERIN ...
linkinghub.elsevier.com/retrieve/pii/0002934378907672

http://www.cigna.com/healthinfo/nord227.html
For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html.

Fructose Intolerance and IBS - Fructose Intolerance and ...
28 Dec 2010 ... One study looked specifically at fructose intolerance in adults diagnosed with IBS. ... Hereditary Fructose Intolerance Medline Plus. ...
ibs.about.com/od/symptomsofib1/a/fructose.htm

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Going to leave this one with you Gerri as from digging around and opening a few links for cursory glance 'seems' like a bit of an 'out on a limb'?

Happy to check out more for you, perhaps a different criteria?

Thanks Molly it's going to take me a while to read all this info lol.

You are thorough.

Hugs me and lots kisses from Makaylah.

Makaylah getting little notty lately - think it's the weather and not being able to get her out as much as she needs

Gerri

I also thought they were referring to children - since I stopped the fructose sugar my IBS and GERDs not as bad.

Hugs

Gerri