• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Has anybody tried Hydrocortisone therapy?

MNC

Messages
205
Hi,

I would like to know the experiences of those who have tried Hydrocortisone therapy. Pure hydrocortisone in low doses, not big ones or mixed with other things.

Two years ago I took the saliva cortisol test (stress test) and the 4 samples of the day where ridiculously low. The one who told me to take this test was Dr.Neville from www.chronicfatigue.org, the one who follows the work of the deceased Dr.Poesnecker in his clinic in America.

I have also read studies where it is apparently being successful in treating depression resistant to antidepressants. And I do suffer that all my life too. Antidepresssants only make me worse and I do suffer depression/anxiety/insomnia/stress intolerance much before having full CFS.

I also found this interesting study where Dr.Hortolf says that 95% of the patients get cured or improve a lot under low dose Hydrocortisone.

http://www.ei-resource.org/news/chr...or-chronic-fatigue-syndrome-and-fibromyalgia/

Or this one (in which someone named Simon Wessely was part): http://www.kcl.ac.uk/content/1/c6/01/47/68/29Cleare1999.pdf

If anyone has experience with it I will appreciate it. On Thursday I met a CFS doctor who says I am Celiac and to stop eating gluten and also gave me low dose cortisone, but normal cortisone (Deflazacort) instead of Hydrocortisone. I suggested him if we could try Hydro but he said he had no experience with it. As far s I know, CFS people may respond well to Hydro, but not to the normal one.

Any input will be appreciated.

Thanks in advance.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Hi,

I would like to know the experiences of those who have tried Hydrocortisone therapy. Pure hydrocortisone in low doses, not big ones or mixed with other things.

I've tried low dose hydrocortisone. I did badly on it. It caused me immuno-suppression and my infections seemed to go wild.

I also found this interesting study where Dr.Hortolf says that 95% of the patients get cured or improve a lot under low dose Hydrocortisone.

http://www.ei-resource.org/news/chr...or-chronic-fatigue-syndrome-and-fibromyalgia/

The 95% figure is rubbish. A minority of CFS patients do well on h/c. But many do really badly. If XMRV is the cause of ME/CFS (or even a passenger, though I don't see how that could happen), then I would be cautious taking hydrocortisone, as we know that XMRV has a glucocorticoid response element.
 

CBS

Senior Member
Messages
1,522
Hi MNC,

In some ways I suspect that I am a bit unusual in that I responded very well to low doses of hydrocortisone for a period. I was put on hydrocortisone after extensive testing and a lot of evidence of mid brain (hypothalmic/pituitary damage, the most notable is florid diabetes insipidus- PM me if you want more details) most likely the result of viral and parasitic (toxo) infections. I still need low doses with close monitoring but for me hydrocortisone is not a panacea.

I agree with Garcia that the 95% figure is rubbish. I also would advise you not to do it unless under the close supervision of an endocrinologist and with strong evidence of a significant adrenal or pituitary problem. Even though I need it, the recent work on XMRV makes me a bit anxious about both the glucocorticoid and androgen stimulating replication (I have huge androgen deficits but I responded horribly to replacement - do much better without).

Significant adrenal insufficiency is a medical emergency and corticosteroid replacement is a must in that situation but serum cortisol values are notoriously unstable (they vary dramatically throughout the day). Over use of steroids is easy to do (several studies have shown that with long term use, 5 mg (of hydrocortisone) too much can mean the difference between good health and significant problems later in life - dosing cycles across the course of a day are also important - the body does not respond well to repeated unnatural spikes). The scary part is that if you respond positively (feel better on hydrocortisone), that extra 5 mg actually will feel good and give you a bit of a boost in the short term.

Garcia is also right about the immuno-suppressive qualities of corticosteroids. I strongly advise against experimenting with steroids.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I took the HC back in February of 2009 and it was DISASTROUS. It over stimulated my adrenals real badly and then crashed them.
I got it on the advice of the Holtorf doctors. I don't recommend them or it.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
On Thursday I met a CFS doctor who says I am Celiac and to stop eating gluten and also gave me low dose cortisone, but normal cortisone (Deflazacort) instead of Hydrocortisone. I suggested him if we could try Hydro but he said he had no experience with it.

Hi MNC,

I'm a celiac too ... I've never heard of anyone being told that they were a celiac and told to give up gluten AND take steroids. Typically, when celiacs give up gluten, their villi begin to heal within a few days. I'm not sure why anyone would take steroids at this point .. Everyone I've met has been told to give their bodies a chance to heal. It takes awhile for the gluten antibodies to get out of your system.

Did you have any labs drawn ? Did you get a biopsy for celiac disease ? It's best to do these tests prior giving up gluten because your numbers will drop and your villi will begin to heal quickly ... So, this way your medical records indicate that you have celiac disease. This come in handy if you're hospitalized and require GF food.

X ...
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I strongly agree with Xchocoholic.

There's a possibility that your gluten intolerance is THE reason for your poor adrenal function and thus, low cortisol. Just my two cents, but I'd avoid steroids for now, and at least wait and see how things go as your gut heals and you are able to then finally get the nutrients your body (and of course your adrenals) need and have been unable to get because of the intestinal damage.

We had an older woman in our local support group who after a lot of testing found out she had many issues, including several infections and lyme disease. But she also found out she was extremely gluten intolerant -- she had celiac. Just by cutting out all gluten, and starting a rotation diet so that her gut could heal, plus adding probiotics, her energy level SOARED within about 6-8 months, even before she started treating the lyme, etc.

She's in her mid-sixties and has been cross-country skiing during the winter and hiking during the summer, for the past 3 years.


best regards,

Dan
 

MNC

Messages
205
Thank you for your replies.

xchocoholic: The story goes like this, it's a bit complicated. An old CFS mate called me some months ago to tell me she is completely cured. She told me she had met a doctor (rheumatologist) who is dedicated to CFS/FMS and has found that many patients actually are celiac. I called him and went to see him (after waiting ages because he is so busy). He told me that 40% of his patients are recovering by going gluten free, and I do believe him. I think he is absolutely honest and a good person. Just my feeling. He works for the Social Security and the consultations are for free. He is not making money out of it.

So he ordered a lot of tests, including celiac ones. All my tests were normal except for blood copper, which he always asks to every patient. He told me I have the lowest copper he has ever seen. He checked a diagnostics book and over the internet in the Up To Date medical database in front of me and the possible reasons for low copper are a few. The most likely in my case are two: adrenal dysfunction and intestinal malabsorption. (I had also checked this on the internet myself). I have had low blood copper for more than 10 years at least, because I saw it in many other tests I took in the past.

OK, so he said that many times the Celiac tests are normal and he goes to the biopsy (as in my friend's case). He said I was too ill for the biopsy and that all my signs and symptoms to him sounded like celiac for his experience. He asked me if I wanted to try to go off gluten as I had not many more treatment options and little to lose (most of us feel better gluten free and so do I as I tried it before). And he also suggested to take copper supplements and low dose cortisone (starting ver very small and upping it).

I have been taking copper supplements for some months and it didn't improve my tests outcome. He admits he doesn't know what low copper may mean and how serious it can be for my health. So that is why he tried this 3-side approach; gluten-copper-cortisone.

So, what I know for sure is that this friend is doing great gluten free. She says she has been ill all her life and now feels better than ever after a few months off gluten. We met in person and spoke many times in the past and I do believe her 1000%. I also believe the doctor. He told me he will be presenting his results in some congress and he hopes he will be getting funds from our social security to have more resources and more people working with him (I had to wait 3 months between one appointment and this second one as he is so busy).

And that is the story. By now I am only gluten free (three days) and I don't know what to do about the cortisone. That is why I asked here. I really fear cortisone from past experiences.

Again, thanks to all of you for your replies. A hard decision for me.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Again, thanks to all of you for your replies. A hard decision for me.

Hi MNC,

Remarkable story about the doctor looking for and treating celiac's disease. Thanks for posting; something about makes me think I should look into this more closely.

Regarding low-dose HC: I've been doing low-dose hydrocortisone (approx. 20-25 mg/day) for over ten years and would be almost non-functional without it. I created a post a couple years ago about some of my experiences; I'll paste it below in case you have an interest.

Good luck with whatever you decide to do. If you do decide to give it a try, I would suggest looking at it as a "trial" run. Trust your gut instincts as to whether to proceed or not. I've tried two prescriptions in the past where I never took a second dose; just knew it wasn't for me. But I would never have known had I not tried.

Best Regards, Wayne
...........................................

“Safe Uses of Cortisol” by William Jeffries.

I considered this book (and still do) the most authoritative literature on low-dose hydrocortisone I’ve been able to find. Dr. Jeffries devoted his entire career to researching and developing a low-dose hydrocortisone protocol for people with CFS, FM, arthritis, post-viral syndrome, mononucleosis, HPA axis dysfunction, hypoglycemia, and many other conditions including infertility. He found even marginal adrenal insufficiency can have big effects. Some highlights I’ll mention for now:

1. The average body makes approx. 40 mg cortisol/day. If you have adrenal insufficiency, the adrenal glands are constantly trying to increase cortisol levels, and being unable to do so, virtually never fully rest. By supplementing with enough cortisol (Cortef) to bring levels back up to normal, the whole body starts to function better and the adrenal glands get a chance to start resting and hopefully start rejuvenating.

2. The average dose necessary to bring cortisol levels to normal are 20-30 mg per day. As long as you keep the amount below 40 mg/day, your adrenal glands will not shut down, which is a problem with higher dose supplementation. He goes into detail the history of cortisone, and how the initial promise of it became obscured when early high dose supplementation created many of the problems that doctors are currently concerned with. Unfortunately, most doctors know nothing about the safety of lower doses.

3. Cortef / hydrocortisone has the same molecular structure as our body’s natural cortisol. Prednisone and most of the other synthetic “souped-up” products that are often prescribed are on average about 4 times more potent than cortisol. Each pharamaceutical company had to come up with their own unique molecular formula so they could get a patent and get in on this market. Supplementing with these can be very problematic on a long-term basis.

4. He has little confidence in any of the current tests to measure cortisol levels, including the Cortrosyn Stimulation Test or the Adrenal Stress Index test. He says our cortisol levels fluctuate too much to get an accurate snapshot of the true status of adrenal function. He instead relies primarily on a patient’s response to a trial supplementation. He starts out at 20 mg/day for about 1-2 weeks. If no improvement is noticed, he increases it to 30 mg/day. If there is still no improvement in symptoms, he usually determines that adrenal insufficiency is not the problem, and takes another 2-4 weeks to gradually withdraw the supplementation. In other words, if you don’t need it, your body won’t respond to it.

I’ve been taking 20-25 mg/day of Cortef for about 8 years now and I believe it is the difference between my being about 20-25% functional as opposed to being about half that or less. All the “side effects” have been good. To name a few: better digestion, better stress response, increased ability to relax, better sleep, and more.

I’ve experimented with two other brands of hydrocortisone. I believe one was a compounding pharmacy product and another a brand name I can’t remember. Neither of them were good for me at all (gave me a very disconcerting feeling). Only the Cortef works for me.

My initial dose of 5 mg felt like I had drunk too much coffee and went outside and walked like I hadn’t walked in ages. I realize now that my body was so unused to having this degree of energy coursing through my system, and needed time adjusting to it. But gradually increasing the amount over a two week period brought me to appropriate and comfortable levels. I now feel very confident that this is both safe and highly beneficial for me.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
To all those who do well on h/c, have any of you tested positive for XMRV? If so could you PM me (if you are willing), as I'd be very interested to hear of such a combination.
 

alice1

Senior Member
Messages
457
Location
Toronto
a friend with cfs went on low dose cortef for 2 years,she's off it now and is still doing well.
good luck with your decision.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
In 2002 I was ok on it. It helped. Since my adrenals are worse now, it makes them worse. It literally puts me in bed. I can't take Isocort either or ACE. My adrenals are reacting to everything. When your adrenals are really low, what should help actually harms.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
...........................................

“Safe Uses of Cortisol” by William Jeffries.

I considered this book (and still do) the most authoritative literature on low-dose hydrocortisone I’ve been able to find. Dr. Jeffries devoted his entire career to researching and developing a low-dose hydrocortisone protocol for people with CFS, FM, arthritis, post-viral syndrome, mononucleosis, HPA axis dysfunction, hypoglycemia, and many other conditions including infertility. He found even marginal adrenal insufficiency can have big effects.

My initial dose of 5 mg felt like I had drunk too much coffee and went outside and walked like I hadn’t walked in ages. I realize now that my body was so unused to having this degree of energy coursing through my system, and needed time adjusting to it. But gradually increasing the amount over a two week period brought me to appropriate and comfortable levels. I now feel very confident that this is both safe and highly beneficial for me.

Hi Wayne--

I read that book by Jeffries, and it made total logical sense. Given the fact that my saliva cortisol tests indicated LOW cortisol, and that I had almost all the symptoms of adrenal fatigue, it was the logical conclusion that hydrocortisone (HC) would be helpful for me.

But the REALITY of taking HC turned out VERY DIFFERENTLY from the THEORY that it would be "good for me." In fact, HC was one of the two most detrimental things I have ever taken. (The other is iodine which I have written about extensively on another thread.)

HC OVER-stimulated my adrenals so badly that I ended up with the worst anxiety of my life, which lasted three months after I had stopped taking the HC. It also caused severe heart palpitations and arrhythmia, and greatly worsened my insomnia. The over-stimulating effects were followed by an adrenal crash, which brought me to a point of exhaustion much worse than where I had been before I began the HC, and which I am still recovering from more than a year later.

My point is be careful with this stuff. Not everything you read in a book will turn out to be the right thing for you. When HC turns out to be NOT right for you, it can be quite damaging. I am living proof of that.
 

sela

Senior Member
Messages
122
Location
marin co, ca
i got on the adrenal bandwagon last summer. at first it was amazing. i got to actually hike! i had energy! i needed more and more and more. and i mean that if i didn't have it i crashed into a million pieces. i was up to 60 mg per day. all of a sudden it stopped working. i tapered off and then quickly realized i didn't need to taper, i just stopped. it is as if the pills were sugar pills, nada. but i had less energy than ever after this effort . whole exercise lasted about 3 months. nine months later, i am worse than i was a year ago.
i used the forum that branched off stop the thyroid madness. there is an adrenal guru who is now into rt3. you can call and consult with her. though no one could explain why i needed so much and then why it suddenly stopped working. i feel the cortef may have damaged me somehow.
it's powerful stuff.
 

CBS

Senior Member
Messages
1,522
40 mg/day is not a standard replacement dose

Numerous peer reviewed articles would argue strongly that 40 mg is way too much for long term use (15-20 is the typical replacement dose for someone with primary or secondary adrenal insufficiency - caused by pituitary dysfunction or ironically by overuse of steroids). You also need to think about natural circadian patterns of ACTH release.

At the least, excessive long-term dosing carries the risk of bone density depletion, suppression of existing (residual?) adrenal capacity, GH problems and immuno-suppression. Hip fractures (and poor healing due to osteoporosis) are common with excessive long term use of HC. Forty mg/day is a "stress dose" that should not be used for more than a few days, when someone with primary or secondary adrenal insufficiency has an infection, is vomiting, or has sustained an injury.

________________________________________________________

Correction of cortisol overreplacement ameliorates morbidities in patients with hypopituitarism: a pilot study.


[FONT=&quot]Danilowicz K, Bruno OD, Manavela M, Gomez RM, Barkan A.[/FONT]
Division of Endocrinology, Hospital de Clnicas, Avenida Crdoba 2351, 5 degrees piso, 1120, Ciudad Autnoma de Buenos Aires, Argentina.
Abstract

CONTEXT: Hypopituitarism in adults is known to be associated with deleterious effects on body composition, lipid profile and quality of life (QoL). This was attributed to GH deficiency. The potential role of glucocorticoid overreplacement had never been investigated. OBJECTIVE: To investigate whether reduction in glucocorticoid replacement dose to more physiological one could ameliorate the "AO-GHD"-attributed symptomatology in patients with hypopituitarism. Design Eleven patients with panhypopituitarism taking 20-30 mg/day of hydrocortisone, but on no GH replacement were switched to 10-15 mg of hydrocortisone daily. Both basally and 6-12 months later, their body mass index, body composition by dual-energy X-ray absorptiometry, lipid profile, and the score of quality of life, QOL-AGHDA were measured. RESULTS: Within 6-12 months of lower hydrocortisone dose, subjects lost an average of 7.1 kg of total body fat and 4.1 kg of abdominal fat. No changes were seen in lean body mass, bone mineral content and HOMA-IR. Plasma total cholesterol and triglyceride concentrations decreased significantly (< 0.05) and the QoL improved (P = 0.018). CONCLUSIONS: Our pilot study suggests that decreasing the glucocorticoid replacement dose to approximately 15 mg/day is beneficial in terms of patients' body composition, lipid profile and quality of life.

________________________________________________________


[FONT=&quot]J Clin Endocrinol Metab. 2006[/FONT] Oct;91(10):3954-61. Epub 2006 Aug 8.
The impact of glucocorticoid replacement regimens on metabolic outcome and comorbidity in hypopituitary patients.

[FONT=&quot]Filipsson H, Monson JP, Koltowska-Hggstrm M, Mattsson A, Johannsson G.
Department of Endocrinology, Grna Strket 8, Sahlgrenska University Hospital, S-413 45 Gteborg, Sweden.[/FONT]

Abstract

BACKGROUND: Hypopituitary patients with untreated GH deficiency and patients on inappropriately high doses of glucocorticoid (GC) share certain clinical features. OBJECTIVE: The aim of the study was to examine the influence of GC substitution on clinical characteristics in hypopituitary patients before and after GH replacement therapy. METHOD: A total of 2424 hypopituitary patients within the KIMS (Pfizer International Metabolic Database) were grouped according to ACTH status. Comparisons were performed between subjects on hydrocortisone (HC) (n = 1186), cortisone acetate (CA) (n = 487), and prednisolone/dexamethasone (n = 52), and ACTH-sufficient patients (AS) (n = 717) before and after 1 yr of GH treatment in terms of body mass index, waist and hip circumference, blood pressure, glucose, glycosylated hemoglobin (HbA1c), serum lipids, IGF-I, and comorbidity. Hydrocortisone equivalent (HCeq) doses were calculated, and measurements were adjusted for sex and age. RESULTS: At baseline, the HC group had increased total cholesterol, triglycerides, waist circumference, and HbA1c, and the prednisolone/dexamethasone group had increased waist/hip ratio as compared with AS. After HCeq dose adjustment, the HC group retained higher HbA1c than the CA group. GC-treated patients showed a dose-related increase in serum IGF-I, body mass index, triglycerides, low-density lipoprotein cholesterol and total cholesterol levels. Subjects with HCeq doses less than 20 mg/d (n = 328) at baseline did not differ from AS in metabolic endpoints. The 1-yr metabolic response to GH was similar in all GC groups and dose categories. All new cases of diabetes (n = 12), stroke (n = 8), and myocardial infarction (n = 3) during GH treatment occurred in GC-treated subjects. CONCLUSION: HCeq doses of at least 20 mg/d in adults with hypopituitarism are associated with an unfavorable metabolic profile. CA replacement may have metabolic advantages compared with other GCs.
________________________________________________________

[FONT=&quot]J Endocrinol Invest. 2005[/FONT] Jul-Aug;28(7):632-7.
Comparison of different regimens of glucocorticoid replacement therapy in patients with hypoadrenalism.

[FONT=&quot]Barbetta L, Dall'Asta C, Re T, Lib R, Costa E, Ambrosi B.[/FONT]
Endocrinology Unit, Department of Medical and Surgical Sciences, Istituto Policlinico San Donato, University of Milano, Milano, Italy.
Abstract

Since the optimal glucocorticoid replacement needs to avoid over and under treatment, the adequacy of different daily cortisone acetate (CA) doses was assessed in 34 patients with primary and central hypoadrenalism. The conventional twice CA 37.5 mg/day dose was administered to all patients (A regimen: 25 mg at 07:00 h, 12.5 mg at 15:00 h), while in 2 subgroups of 12 patients the dose was shifted on 2 thrice daily regimens (B: 25 mg at 07:00, 6.25 mg at 12: 00, 6.25 mg at 17:00; C: 12.5 mg, 12.5 mg, 12.5 mg). In other 12 patients the conventional dose was reduced to a thrice 25 mg/day administration (D regimen: 12.5 mg, 6.25 mg, 6.25 mg). In all patients, urinary free cortisol (UFC) excretion and cortisol day curves were evaluated. During the CA 37.5 mg administration, nadir cortisol levels were significantly higher with the thrice daily regimens (143 +/- 31 on B and 151 +/- 34 nmol/l on C) than with the conventional twice (85 +/- 16 nmol/l). Moreover, UFC, morning cortisol levels and mean cortisol day curves were similar in each group. Finally, during D regimen nadir cortisol levels were higher than in A and similar to B and C regimens. No difference in UFC and in cortisol day curves by reducing the CA dose was found. In conclusion, the thrice daily cortisone regimens, in which more physiological cortisol levels are achieved, perform better as replacement therapy. The administration of 25 mg/day CA confirms that replacement therapy is more adequate with a lower dose, particularly in patients with central hypoadrenalism.

________________________________________________________

[FONT=&quot]Clin Endocrinol (Oxf). 2004 Jun;60(6):688-93.[/FONT]
Conventional glucocorticoid replacement overtreats adult hypopituitary patients with partial ACTH deficiency.
[FONT=&quot]Agha A, Liew A, Finucane F, Baker L, O'Kelly P, Tormey W, Thompson CJ.[/FONT]
Department of Endocrinology, Beaumont Hospital, Dublin, Ireland.
Abstract

BACKGROUND: Glucocorticoid therapy is associated with potentially serious side-effects, but there is no information available regarding glucocorticoid requirement in adult hypopituitary patients with partial ACTH deficiency. SUBJECTS: Ten male adult hypopituitary patients with partial ACTH deficiency, baseline plasma cortisol > 200 nmol/l but a peak stimulated cortisol < 500 nmol/l and 10 matched healthy male control volunteers participated. DESIGN: Patients were assigned, in a random order, to a cross-over protocol of treatment for 1 week with full dose hydrocortisone (10 mg twice daily), half-dose hydrocortisone (5 mg twice daily), or no treatment. All patients completed all three of the treatment limbs. MEASUREMENTS: Following each treatment schedule, patients underwent an 11-h cortisol day curve (CDC), and the results were compared with those from the 10 control volunteers on no glucocorticoid treatment. RESULTS: The integrated CDC values were significantly higher in patients taking a full dose of hydrocortisone compared to controls (P < 0.001). There was no significant difference in the integrated CDC between patients on half-dose (P = 0.37) or no hydrocortisone treatment (P = 0.13), compared to control subjects. Peak postabsorption cortisol values were higher in patients receiving full-dose hydrocortisone treatment compared to controls (P < 0.001). There was no significant difference in plasma sodium concentration, blood pressure or corticosteroid-binding globulin between patients on any treatment schedule and controls. CONCLUSION: Adult patients with pituitary disease and partial ACTH deficiency have a cortisol secretory pattern comparable to that of healthy controls. Conventional full-dose replacement with 10 mg twice daily of hydrocortisone produces hypercortisolaemia, whereas half-dose produces a CDC that is not statistically different from that of healthy controls. The results suggest that current conventional glucocorticoid replacement overtreats patients with partial ACTH deficiency under normal unstressed physiological conditions.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
i got on the adrenal bandwagon last summer. at first it was amazing. i got to actually hike! i had energy! i needed more and more and more. and i mean that if i didn't have it i crashed into a million pieces. i was up to 60 mg per day. all of a sudden it stopped working. i tapered off and then quickly realized i didn't need to taper, i just stopped. it is as if the pills were sugar pills, nada. but i had less energy than ever after this effort . whole exercise lasted about 3 months. nine months later, i am worse than i was a year ago.

i used the forum that branched off stop the thyroid madness. there is an adrenal guru who is now into rt3. you can call and consult with her. though no one could explain why i needed so much and then why it suddenly stopped working. i feel the cortef may have damaged me somehow.
it's powerful stuff.

Hi Sela--

I know that yahoo forum that you're talking about with the adrenal guru--Valerie Taylor. I think the way that she is dispensing medical advice regarding a PRESCRIPTION HORMONE is incredibly dangerous. (She is actually a dog groomer by profession.) Valerie almost consistently recommends RAISING one's dose of HC, and several times made comments about how even 40 mg of HC is NOT a high dose. Here is one of her direct quotes, in response to someone's question on that forum. All typos (which she is habitual with) are hers:

POST FROM YAHOO FORUM MEMBER: "I am also questioning if high doses of HC are best for EVERYONE. We are all different in our biochemistry. Maybe some of us are just too sensitive to HC to be able to handle a larger dose."

RESPONSE FROM VALERIE "OK I have to step in here. FIRST, 40 mg a day is NOT a high dose of HC. In a stressful situatioin your body can make 200-3000 mg of cortisol in a HEARTBEAT. SO whether NORMAL reaplacement doses are for everyoine.. WHY WOULDN'T they be? We are only taking about replacing a BIOIDENTICAL hormon that you are low in. Intolerance of ti is ALWAYS from improper dosing in my experience. Or something ELSE goig on perhaps some supplement or food you couls be reacting to. HC ios NOT a drug that some people migh tbe sensitive to, though some MAY be sensitive to the fikllers in the tablet."

This is VERY extreme, inaccurate and dangerous advice, and there is A LOT of it on that Yahoo adrenal (and thyroid) forum. If I had followed Valerie's "advice," to take an even higher dose, I could have ended up in even worse trouble than the ordeal I had to contend with.

I wrote an email to Mary Shomon (the author of several books on the thyroid) to ask her opinion about some of Valerie's advice, and she responded back to me that she receives MANY emails regularly from people on the yahoo thyroid and yahoo adrenals forums who have become seriously ill from dosing too high on HC and thyroid, some of whom have in fact ended up in the emergency room with near heart attacks.

IMO hormone therapy of any kind should ONLY be done under the supervision of a VERY SKILLED and EXPERIENCED health professional, with many years of experience and a lot of understanding of individual sensitivities to these powerful drugs.
 

CBS

Senior Member
Messages
1,522
Retinal detatchemnt and excess cortisol

I left out retinal detachment (central serous retinopathy) as another known complication of excessive steroid use: http://en.wikipedia.org/wiki/Central_serous_retinopathy

CSR is a fluid detachment of macula layers from their supporting tissue. This allows choroidal fluid to leak into the subretinal space. The buildup of fluid seems to occur because of small breaks in the retinal pigment epithelium.
<snip>
CSR has also been associated with cortisol and corticosteroids, and persons with higher levels of cortisol than normal also have a higher propensity to suffer from CSR. Cortisol is a hormone secreted by the adrenal cortex which allows the body to deal with stress, which may explain the CSR-stress association. There is extensive evidence to the effect that corticosteroids ("cortisone") --- commonly used to treat inflammations, allergies, skin conditions and even certain eye conditions --- can trigger CSR, aggravate it and cause relapses.[2][3][4]
The incidence of CSR in persons with Cushing's syndrome is 5%. Cushing's syndrome is characterized by very high cortisol levels.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
To all those who do well on h/c, have any of you tested positive for XMRV? If so could you PM me (if you are willing), as I'd be very interested to hear of such a combination.

Hi Garcia,

I haven't been tested yet for XMRV, but am hoping this will happen soon, perhaps this year yet. I'll likely post my test results when I eventually get them, and will try to remember to include that I'm taking low-dose hydrocortisone.

Regards, Wayne
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I know that yahoo forum that you're talking about with the adrenal guru--Valerie Taylor. I think the way that she is dispensing medical advice regarding a PRESCRIPTION HORMONE is incredibly dangerous.

Hi Dreambirdie,

I would agree with your assessment. In fact, this woman comes across as sort of a "nut case". I occasionally run across these kinds of people. They get a little bit of information and then try to come across as an expert, on any given number of topics. It seems they often do this more to bolster their own ego than to dispense information as accurately as possible.

I believe you're absolutely correct that people should use the utmost discrimination when listening to people like this (or even doctors for that matter), especially when it comes to some critical decisions like supplementing with HC or anything else.

I find it sad to hear of testimonials from people who take various antibiotics or whatever, and suddenly find their lives changed forever, often because they followed strict protocols instead of tuning into whether what they were supplementing with was really appropriate. Anyway, your cautionary notes are well taken; I understand where you're coming from.

Best, Wayne
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
He admits he doesn't know what low copper may mean and how serious it can be for my health.

hi again,

I posted a thread on celiac disease in the research section that may help you ...

As luck would have it, the author of "Recognizing Celiac Disease" was recently at my support group and gave a lecture on copper deficiency. Here's a link to her book ...

http://www.amazon.com/Recognizing-Celiac-Disease-Associated-Complications/dp/0978862643

I'm sure you could google copper deficiency and get more info too though ...

HTH ... X

PS. Thanks everyone for sharing your info on steroid therapy here. One never knows what one may have to try one day ...