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Suggest Treatment For Hypophysitis

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Posted on Thu, 7 Sep 2017
Question: I am a physician, FP. Was a computer systems analyst/programmer for 8 years, then entered DO school in Michigan. Worked along US Mexican Border at high volume emergency departments for 15 years,
then 8 years as a hospitalist/ icu, 5 years in the rural Philippines at 150 bed hospital, 50,000 patient drawing area, two physicians. Office practice, Nursing home.
Now 66, recently discovered health care problem, suspect hypopituitary-pituitary-adrenal pathology,
consulted an endocrinologist, whom diagnosed hypophysitis, Inflammation of the Pituitary.
As I worked for years as a professional researcher, work in many front line patient care scenarios, have seen personally most infectious disease, many chronic pathologies, and many unusual combinations. My skill was that I had a very wide experience, and could put together pathologies that involved multiple systems, and have been doing well in this niche, for those patients that have been to many doctors and never got a diagnosis.

So, though I am well read, intelligent, I do know my limitations.

I would like to talk with a physician that has treated patients for HYPOPHYSITIS, so that I can understand what they know about the patients that they have treated and the ups and downs.

It took me 3 weeks to understand basic maintenance therapy for myself, because my GI tract has been
having edema and thus problems with absorption. It was rough. But I know it better now,

The literature tells about the illness and associated illness, however the therapy is just matter of fact.

As a physician, for any given pathology/ diagnosis, one therapy never works for everyone. There are always multiple therapies, because one does not work for all.

In the literature, the discussion on therapy is
Therapy: Glucocorticoids.
That is it. Some get a little deeper, but little.
Hydrocortisone is the main stay, 10 mg to 20 mg is ideal, once in the am, but many people have to
take hydrocortisone in early am and at noon.
Dexamethasone is 10 times more potent than hydrocortisone.
Crisis is a term for Hypophysitis, I got crisis from a tooth removal, lasted 2 weeks changed from 15 mg
of hydrocortisone to 100 mg, IM.
Then fell, hit my head with a laceration requiring 2 sutures, talked my son thru it. Another two weeks of crisis, at 100 mg of injectable hydrocortisone. Then with insomnia, took clonidine to sleep,
clonidine caused constipation, which caused another crisis, and am into the second week for that.

One must be able to sleep thus one has to take short acting steroids
Hydrocortisone, Prednisone, methyl prednisilone, dexamethasone.

If one take medium or long acting glucocorticoids, they run the risk of not going to sleep for up to the length of the steroid.

If I could just listen to a physician that treats these patients, the treatments, the problems, the ups and downs, the actual mgs.

1. Maintenance Therapy with glucocorticoids appears to be the mainstay in western medicine.
Must be preparted to adjust for "crisis", may be ten times your regular dose in a few hours of crisis.

2. Growth hormone and testosterone, this is being used, the literature is sparse. Outcomes are sparse. It has been stated to make cures. It is used in men.

3. There is a Chinese Medicine therapy, lasts 4 to 6 weeks. Includes acupuncture, Moxibustion,
chinese herbal therapies.

4. Cosyntropin therapy. I read on 5 individuals that took 250 mics of cosyntropin, IM, once per day,
prescribed 30 days worth. They took the cosyntropin IM, 250 mics once per day, at around 8 to 25
days, each of these 5 patients went into complete rebuild, kick start, their pituitary started working and they became normal again.

5. The D.C.s and the Naturopaths use Panax 1500 mg (Ilhwa has been repeated studied to be the top of the line product), Pregnenolone (as a precursor), DHEA 100 mg they use as a kick start.

6. Low dose naltrexone for autoimmune pitutitary disorders. (from 2 months to two years of therapy)

7. Naturopathic Therapy, maintenance, using thyroid hormone, and diet,

8. Surgical Therapies,

9. For infectious etiologies, the anti infective therapies.

This is considered a rare disease. Though am well read and have been on the front lines of physician-patient interactions, have seen over 200,000 patients. My experience in Hypophysitis is
low to lower.

It would be a great relief to listen to a physician that has treated over 100 of these patients and to better understand the therapies that they have used, the successes and failure.

Would like an answer by a physician that has taken care of over 100 cases of Hypophysitis and/or similar.
ThanKs

XXXX
doctor
Answered by Dr. Binu Parameswaran Pillai (9 hours later)
Brief Answer:
Hypophysitis and its course

Detailed Answer:
Dear Dr XXXXXXX

Good day. Noted your history. Thank you for the detailed history. I currently work in Muscat and prior to that, in few other countries as well. I have treated several cases of hypophysitis. Most of them were lymphocytic hypophysitis, few auto immune hypophysitis, few tuberculosis related hypophysitis, couple of sarcoid related hypophysitis and one B cell lymphoma related hypophysitis,.

Hence the treatment is also based on the cause of hypophysitits. If treatable, we have to treat the underlying cause. Generally we run tests for tuberculosis, sarcoidosis, pituitary antibodies. High dose steroids may work as a treatment in some cases, but not in all cases.
In many cases, hypophysitis settles over a time and pituitary regains the function. But in half of the cases atleast, some hormone deficiency and even an empty sella may occur. Most neuro surgeons prefer not to do a trans nasal trans sphenoid pituitary biopsy for diagnosis eventhough it is recommended in many cases to obtain a sample for diagnosis. If the surgeon is not skilled, that might result in pituitary injury.

Then comes the replacement therapy. As you know, depending on the extent of hypophysitis, both anterior and posterior pitutary hormone deficiencies may occur. Commonly, there will be hypocortisolism, hypothyroidism, hypogonadism and diabetes insipidus. Sometimes, i have also seen growth hormone deficiency.

As you said, typically we prefer to use short acting steroids like hydrocortisone 15-20 mg per day in split doses and the last dose no later than 4 pm. If you give a late night steroid as replacement, there coud be sleep issues as well as a slow recvery of HPA axis. Yourself and close familymembers should be aware about steroid crisis in an event of sickness. You need to double or triple the oral hydrocortisone during a febrile illness. If you develop a diarrheal disease, vomiting, a surgical procedure , they will have to give you intravenous steroids till the high stress period is over. I am sure you are aware of this. It is better to carry a steroid alert card/wrist band with you.

Thyroid hormone is given as a once daily morning dose. Testosterone as gel or Depot injections. Diabetes Insipidus is treated with Minrin nasal spray or tablets. Many patients can manage by drinking water at day time and they need the spray only in the night to avoid nocturia.

Eventually many patients recover from lymphocytic/autoimmune hypophysitis over a period of several months. Noticed severe headache in many patients initially which will also settle with time. We may have to do a Synacthen test to determine the recovery of your HPA axis before deciding to stop the steroid replacement treatment.

As practicing endocrinologist, i am not aware about the alternative /naturopathy treatments for hypophysitis.

regards
Binu

Above answer was peer-reviewed by : Dr. Nagamani Ng
doctor
Answered by
Dr.
Dr. Binu Parameswaran Pillai

Endocrinologist

Practicing since :2003

Answered : 1435 Questions

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Suggest Treatment For Hypophysitis

Brief Answer: Hypophysitis and its course Detailed Answer: Dear Dr XXXXXXX Good day. Noted your history. Thank you for the detailed history. I currently work in Muscat and prior to that, in few other countries as well. I have treated several cases of hypophysitis. Most of them were lymphocytic hypophysitis, few auto immune hypophysitis, few tuberculosis related hypophysitis, couple of sarcoid related hypophysitis and one B cell lymphoma related hypophysitis,. Hence the treatment is also based on the cause of hypophysitits. If treatable, we have to treat the underlying cause. Generally we run tests for tuberculosis, sarcoidosis, pituitary antibodies. High dose steroids may work as a treatment in some cases, but not in all cases. In many cases, hypophysitis settles over a time and pituitary regains the function. But in half of the cases atleast, some hormone deficiency and even an empty sella may occur. Most neuro surgeons prefer not to do a trans nasal trans sphenoid pituitary biopsy for diagnosis eventhough it is recommended in many cases to obtain a sample for diagnosis. If the surgeon is not skilled, that might result in pituitary injury. Then comes the replacement therapy. As you know, depending on the extent of hypophysitis, both anterior and posterior pitutary hormone deficiencies may occur. Commonly, there will be hypocortisolism, hypothyroidism, hypogonadism and diabetes insipidus. Sometimes, i have also seen growth hormone deficiency. As you said, typically we prefer to use short acting steroids like hydrocortisone 15-20 mg per day in split doses and the last dose no later than 4 pm. If you give a late night steroid as replacement, there coud be sleep issues as well as a slow recvery of HPA axis. Yourself and close familymembers should be aware about steroid crisis in an event of sickness. You need to double or triple the oral hydrocortisone during a febrile illness. If you develop a diarrheal disease, vomiting, a surgical procedure , they will have to give you intravenous steroids till the high stress period is over. I am sure you are aware of this. It is better to carry a steroid alert card/wrist band with you. Thyroid hormone is given as a once daily morning dose. Testosterone as gel or Depot injections. Diabetes Insipidus is treated with Minrin nasal spray or tablets. Many patients can manage by drinking water at day time and they need the spray only in the night to avoid nocturia. Eventually many patients recover from lymphocytic/autoimmune hypophysitis over a period of several months. Noticed severe headache in many patients initially which will also settle with time. We may have to do a Synacthen test to determine the recovery of your HPA axis before deciding to stop the steroid replacement treatment. As practicing endocrinologist, i am not aware about the alternative /naturopathy treatments for hypophysitis. regards Binu