I have been told that I have lymphocytic Hypophysitis after many years of being referred to as the mystery woman by different consultants. I was told for many years that I have polyglandular autoimmune which has progress over the years and was told last year that I have the above. I would welcome any information/knowledge that you may have about the illness. When did your illness start? What symptoms are you getting and what treatment are you receiving? Anything because I feel completely in the dark as I suspect you do.
I have low cortisol and very low DHEA levels, and have graves disease. and im having problems like you with burning liver, and diarrhoea and chronic pains in stomach.
I am waiting to go to the metabollic unit, as i think all this is connected.
I have been passed from pillar to post over the last 12 years, with daft diagnosis.s along the way. they just havent got a clue.
I think this is all endocrine related?
I have just learned of this disease. I am interested in knowing what symptoms you all were having. I have been told I have a pituitary tumor< but biopsy comes back as normal pituitarty tissue. I have diabetes insipidus and my doctors are stumped as to what I have. After researching this I think it maybe a possibility. I have many other symptoms along with adrenal insuffincency, excessive weight gain, prolactin, and have recently been told I have polymyitosis. Any information of help would be greatly appriciated, I am at my wits end and just want to know what is wrong with me so I can get my life back.
Have you had any updates yet? I know how you feel - it is so frustrating not knowing what is wrong with you. I had similar problems and it was not until I got a very severe head ache (could not open my eyes_) that they took it seriously and diagnosed me with LH.
I had diabetes insipidus first ,followed by adrenal insufficiency, low thyroid (this could be what is causing your weight gain), elevated prolactin (Was lactating).
Because it is such a rare condition doctors often think of it last after considering all the more likely causes like pituitary tumours.
Have you had an MRI? My MRI showed that there was no tumor, but significant enhancement (swelling and it was kind of glowing I think)) around the pituitary stalk which suggested it was inflamed from all the lymphocytes.
Perhaps an MRI could help diagnose you. I am seeing an endocrinologist for my pituitary problem but also an immunologist who really treats the disease itself (As it is an autoimmune thing). Perhaps if you are seeing an endo you could suggest an MRI or see an immunologist.
The great news is that with the help of steroid treatment (which to be honest had horrendous side effects and messed me up a little) the disease is completely treatable. I have had clear MRIs for almost a year now and after 2 years from initially being diagnosed I have recovered almost all of my hormonal function. I still have Mild diabetes insipidus but that is fine with taking minirin once daily before bed but have come off alll my other hormonal meds and steroids, and am only taking methotrexate once a wk to keep the disease at bay.
Hope you have recieved some answers. I would be really interested to hear how it is all going. Hope to hear back from you soon!
I am *so* happy to have found this thread... I've had a bad case of terminal uniqueness since they finally diagnosed me with AH.
Mine started as a 54-month migraine, during which time I went to my GP who didn't believe and would not test. Year later, I go tachycardic(side effect from another med, actually) but the cardiologist test my cortisol levels.... a lucky break. Mine was at 2. Six months later when I finally got into the endocrinologist, he didn't believe I had it either, but tested. My cortisol was at 1 and dropped to 0.5 *with* stimulation. Then my thyroid went out. Then my ovaries. The migraines... still with me.
Fast forward a few years and suddenly I'm feeling horribly overmedicated and strangely enough, everything is working again... I've got ATCH, my adrenals are responding normally, my thyroid test fine... everything...
7 months later it all disappears again... diagnosis of AH.
I'm only on hormone replacements for what my body is not producing. I've also got Sjorgrens.
I want to find a doctor who will take the autoimmune part seriously because I'm starting to have problems with my vision from the disease and it's really starting to scare me. I've also got some really weird nerve issues going on that I've been told could be central neuropathy or part of AH, they're just not sure.
I've kind hit a wall at what to do... suggestions welcome.
361 have you found any answers yet?
only just saw your post - sorry for the late reply.
my problems with autoimmune hypophysitis were only properly taken care of after my migraines got so bad that i finally was referred to an immunologist who treated the underlying autoimmune cause, not just the hormonal, endocrinology based symptoms.
he put me on high dose steroid pulse therapy to decrease the pituitary inflammation - and got rid of my headaches completely (pituitary gland rubbing against my optic nerves - so severe that i could barely see)
and almost all my hormones have repaired themselves over time after this therapy although i am still on small amounts of hormone replacement.
i recommend you see an immunologist if you have not yet and see if he can treat the autoimmune problem.
have you had an MRI? mine was really helpful in proving that I was not making everything up - it showed my pituitary was extremely inflammed. maybe you could do the same as your vision problems/headaches are probably caused by the inflamed pituitary gland rubbing against your optic nerves and they can see this very clearly on an mRI.
Good luck with it al - please let me know how you are going.
The immunologists really only to allergies in the US, but they pointed me to a center i nDenver that's going to try their expert on pituitary disorders on it.
It's nice to be in a large metro area again...
Have any of you heard of LDN treatment? It stands for Low Dose Naltroxen and has very little side effect to none. It's been researched closely and used more frequently with success for any type of autoimmune disease and cancer plus other conditions. It reduces the antibody attack on the system. It's used in place of high dose steroids because of all the negative draw backs to steroids. I was recently diagnosed with AH after 5 years of specialists trying to figure out some of my bizarre symptoms. I have a history of severe HELLP Syndrome during the birth of my child 5 yrs ago and wasn't expected to live. Haven't been the same since. I have Hashi's Thyroiditis, Severe Fibromyalgia, Adrenal Insufficiency (due to AH), CFS, and weird stroke like symptoms that the Neurologist is trying to currently figure out. Anyway, I just wanted to throw the information out there about LDN, especially after seeing that some of you have been on steroids. There are a lot of patients that have Hashimoto Encephalitis and MS that have tapered off of high dose steroids and replaced it with LDN with much success (other forums I've been on). My Neurologist uses it before any steroid treatment because it is so much safer on the body and more effective. I'm up for a Spinal Tap in the next week then will discuss treatment plan using LDN with my Neuro. Good luck to everyone!
In my third trimester of pregnancy I started gaining weight like crazy despite still eating as I always had. After I had my daughter I continued to gain weight. I also didn't feel like myself. I went to my GP who told me I was depressed because I was fat and I was fat because I ate too much. When I told him I would go 3 days without eating and was still gaining he laughed and said "no one your size goes 3 days without eating." A few months later my hands began to tremor constantly. I was afraid I was getting Parkinsons. Then I started behaving in ways I never had before. I was sent to psychiatrist who said i was bipolar and loaded me up on meds. I eventually stopped taking them because they made me feel worse. One night I woke up with the most horrendous headache of my life. I called my mom and she gave me an imetrex because she suffers from migraines. When it didn't help she took me to the er and they gave me pain meds and sent me home. The next morning my head still ached. Noise was excruciating. Light was nauseating and any time I moved even the slightest bit I vomited. She took me back to the er. The ct scan showed nothing (they said) but my white blood count was elevated. They sent me home. The next day I was still no better so she took me back. The new doctor did a spinal tap, ct, and mri. I was then told they were admitting me. It wasn't until I was admitted they told me they found a mass and didn't know what to do. They kept me on heavy doses of dilauded, had a revolving door of doctors, and eventually sent me to a neurosurgeon. The entire time I was there I was out of it and ate nothing...and still gained weight. It was the first time anyone believed me. Today marks the 8 year anniversary of my brain surgery. I was diagnosed with LH. I get mri's yearly. Last year I also started feeling this burning pain in my liver area. I underwent lots of tests and doctors continued to tell me they couldn't find anything wrong. I am amazed to find this and others with the condition saying they have the same pain! it is really hard going to doctors and trying to educate THEM about this condition and it is frustrating to not know all the answers. I do know John Hopkins University was doing research on LH. I participated in their study. the doctors name is Patrizio Caturegli and there is a great website full of information. http://pathology2.jhu.edu/hypophysitis/atjhu.cfm
Dr. Caturegli was awesome at answering questions. The endocrinologist I saw after my surgery told my mom, after she asked how many people he had treated with this, that you will never find a doctor that has treated more than one...it is that rare. Too bad we hit this lottery and not the mega millions!
Suggest you contact Mayo clinic, Endocrinology dept.