FROM OUR MAILBOX

best neurosurgeon to perform the surgery to remove tumors that may be located in a high risk area of the brain.
Very truly,
Patient’s sister

Dear Patient’s sister,
We need to talk, at once. Call the PNA at 805-499-9973.
– Bob Knutzen

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To whom it may concern,
I have question regarding this entity. I was diagnosed with a 5 mm microadenoma about 3 months ago. I am due to repeat the MRI in 30 days.
Labs were minimally abnormal -> borderline low [BL] testosterone, BL growth hormone, BL LH/FSH. Normal TSH, ACTH. Minimally elevated GnRH.
The VA initially said it was nothing. Further pursuit yielded the FSH/LH labs. Then a new provider says it was ok. I took myself outside the VA to an endocrinologist who ordered an MRI for completeness and started me on Depotestosterone.
The MRI showed microadenoma. Now this endocrinologist says it is no big deal and we can just watch it. Am I overly neurotic about these labs and being tired ALL the time with no sex drive? It seems like nobody really cares about this stuff but me, at least amongst the doctors.
Do you have any recommendations for my area?
- Patient

Dear Patient,
Stupidity, ignorance and laziness permeate the medical world. Any pituitary tumor is a big deal. You obviously already have symptoms; anxiety, mood-swings, weight issues, lack of libido for a start. Being married makes it X 2. You must shop the pituitary endocrinologists and centers listed on our web site. Nothing less will do. Only the best are good enough!! Mediocre medical care can be deadly! Get the Pituitary Patient Resource Guide, join the PNA, and attend our conference in December. You cannot walk away from this unscathed. Get Help!
- Robert Knutzen

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Dear PNA,
I passed out a couple weeks ago for an hour. I have been really sick every day since with spells, like I'm going to pass out and can't move my arms or hands and can't really talk. I have been sick for years. My prolactin levels were 66 about 2 years ago, then they went down but I've been post menopausal for 3 years now and I am 42 yrs. old. The ob-gyn did the prolactin test on me but never gave me any diagnosis. The doctors basically have told me there's nothing wrong with me and nothing they can do for me , like I'm crazy. I'm starting to kind of think maybe I am. My new neurologist told me my prolactin levels were only 34 when I passed out and now they are 24 and that is normal but I know that they are supposed to be lower than that when you are post-menopausal. My health insurance only lets me go to so many places. I really think I am going to die. I am not a stupid person, even though that’s how the doctors act. I have a Bachelors degree in business and education and a Masters in education. I do feel retarded now, though. I really need help and don't know what to do. Thanks.
- Patient

Dear Patient,
There is nothing wrong with you that a good doctor cannot make right!!!! Of course you are not crazy! Why are you post-menopausal? Surgically? You are very young for that, otherwise. (There are many other pituitary diseases, besides a prolactinoma!) Were you checked for any other kind? Now, can I assume you have seen a pituitary endocrinologist for this? Ob-gyn, GP's etc. will not do. They are not trained or experienced. I don't care where you have to travel, without proper care you will get sicker. Find the right doctors (on our website), get the Pituitary Patient Resource Guide, join the PNA, get monthly medical updates and get well. The pituitary is a very complex gland, and not nearly enough is understood. Read our web site and get help; you'll be a new woman by 2009. Good Luck.
- Robert Knutzen

Dear Robert,
No, I never had surgery to remove anything. I went to an endocrinologist and before he did any tests on me, he basically told me there was nothing wrong with me and never did a prolactin test on me. Thank you for your advice.
- Patient

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Dear PNA,
My niece is 29 and was diagnosed with a pituitary tumor about nine years ago. For emotional and monetary reasons she has essentially ignored the problem. She does not have insurance and in a very low income bracket, actually poverty level.
Are there resources available to aid her in taking care of this medical condition at your facility or anywhere? Your prompt response is much appreciated as you well know what her prognosis is for her life with this medical problem left unattended.
Thank You.
– Concerned Aunt

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Dear Mr. Knutzen,
I initially contacted you about two months ago in reference to my pituitary situation. You suggested some literature from your organization and that I go to one of the major pituitary centers that the PNA suggests.
Well, I did. I’ve certainly learned much since our initial contact. I’ve basically found a wealth of information from PNA via other support organizations with available online data. I also found the website at Johns Hopkins extremely informative. And then I went on for an evaluation with Dr. A at their Pituitary Center. He has been wonderfully helpful.
It seems that neurosurgical team at ABC Medical Center took my entire pituitary gland five years ago and failed to inform me. The surgeon told me that he had taken only 10%...a small portion. Moreover, the endocrinologist that I’ve seen since then has misdiagnosed a progressively diminishing hypopituitary condition…just the stalk left…extraordinarily low numbers, especially re: growth hormones. I’ve gone for semi –annual blood work and yearly MRIs to see if there might be a recurrence of a tumor…and I don’t even have a pituitary gland for one to grow on! Furthermore, they missed a thyroid deficiency and substantial mass which has luckily turned out to be benign. But the net result is a thyroid that isn’t working either.
I’d like to thank you for your response to my original e-mail and straight forward suggestions about appropriate care. It’s obvious that I wasn’t getting what I needed prior to my trip to Johns Hopkins. And I’d like to ask you several questions if you don’t mind.
(1) What does the usual insurance company say regarding Growth Hormone Replacement Therapy? I’ll be having a test to further identify the severity of growth hormone imbalance and am hoping that my insurance, will cover the monthly injections. I’ve inquired and they rarely cover. Are there any circumstances under which an insurance will pay that might help in my situation?
(2) I’m considering pursuing a legal case against ABC Medical Center and I’m wondering what the success rate of such cases has been in the past. Would you have any references that might help me in this endeavor? I feel that the treatment that I’ve received with this health care organization has been criminal, however, the field of pituitary science re: tumors and correct treatment seems to be historically obscure and I wonder how this plays out in court.
Thank you.
- Patient

Dear Patient,
You are a walking testimonial to the fact that pituitary disorders (patients) are painfully poorly taken care of. I am truly sorry about your condition. Personally I would pursue the medical center for all my costs incurred and for replacement hormones and treatment. No, we do not know of or recommend attorneys. I think this is just the second time in 16 years I have recommended legal action.
Your insurance company, I believe, has to recognize the FDA approval of GH as replacement medication in cases such as yours. If they give you grief get a letter from Johns Hopkins. Then go to the State Insurance Commissioner for help. Once in a while the pharmaceutical company will give you a limited supply of replacement hormones for a short time. Personally, I think ABC Medical Center should a) fight the battle for you or b) pay for your replacement hormones.
You might find our conference in the California desert helpful. Come to the "December in the Desert Conference." It will benefit you greatly. My best to your current doctor. The very best of luck. I am not dismissing you, but we deal in knowledge only and do not ever enter into unfortunate cases. I am sorry.
- Robert Knutzen

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Dear PNA,
Hi. I have been diagnosed with partial Empty Sella. I have continued fatigue, mood swings, trouble with remembering the names of things, weight, and tendencies of mild bi-polar, but the worst is the fatigue. I have been put on numerous anti-depressants, even before the Empty Sella diagnosis. They did not give any positive effects. I would like to find as much information as possible on this area of pituitary dysfunction. My current doctor does a lot in the area of diabetes and insulin resistance and drugs for their treatment. I cannot seem to get a lot of information for what can be done for my particular problems.
Any contacts or information will be greatly appreciated.
Thank you.
- Patient

Dear Patient,
I suspect you need to find a doctor who specializes in pituitary medicine, not diabetes. They are two entirely separate worlds. Find the doctors and medical centers you need on our web site. You may have to travel, because these doctors do not grow on trees. Get the Pituitary Patient Resource Guide and join the PNA. There are no cures for pituitary disorders, but you can improve your life so much with proper care. You'll hardly notice your problems. Come to our conference in December. You will learn a lot and adjust quickly and improve fast. Good Luck.
- Robert Knutzen

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Good afternoon,
I suffered from a craniopharyngioma as child which was removed successfully in Feb 1991 at age 9.
I am well now, but I suffer from many side effects caused by the pressure the tumour in my brain.
The surgeons were forced to remove most of my pituitary gland and stalk to get the tumour out and I have therefore since had to undergo hormone replacement therapy.
I take DDAVP (Desmopressin) for ADHD, Thyroxine and Hydrocortisone. I have also had to have growth hormone & puberty replacement therapy. I am struggling at the moment with depression and would like to speak to someone who has experience in or suffered from a similar condition. I have done research on the internet but a lot of my questions are still unanswered.
I would be very grateful if you could help and advise me of any upcoming seminars/ talks etc.
Thanks,
- Patient

Dear Patient,
We are in California and will have a major conference in December. (Look at our website, ww.pituitary.org and in the upcoming events section of our Highlights newsletter for details.) Virtually all patients with your problems suffer from depression. Until you have all the missing hormones replaced you probably will not get better. Use our web site forums (bulletin boards) to communicate with other patients. Good Luck! Hope to see you in California.
- Robert Knutzen

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Dear PNA,
Can the following symptoms mean something other than a pituitary tumor in a 35 year old woman?
Irregular periods
lactation
alopecia
wt gain of about 1 lb/wk over the last 6 wks
elevated pitocin levels

My daughter-in-law has these symptoms and had an MRI yesterday. I am so worried about her as I am an RN and know that lactation especially is a symptom of a tumor. Any info would be greatly appreciated. She has had thyroid studies that were negative.
Thank you.
– Concerned Mother-In-Law

Dear Concerned Mother-In-Law,
Why would anyone do thyroid studies and not include the pituitary? That is the controlling gland. But yes, these symptoms match. Other questions of vital importance are her libido, mood swings, fatigue, anger, and/or depression? I don't know the expertise of her primary care physician or ob-gyn, but seeing a doctor without pituitary training is a waste of time and money. We learned in 1936 that pituitary tumors strike 24 % of the population. How much did you learn about it in nursing school? Get the best help you can. If the issue is hormonal/pituitary, it warrants any added inconvenience of travel. All the best;
- Robert Knutzen

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From the PNA bulletin boards:
Original post:

Hello. I am new to Cushing’s and pituitary problems. This website has been invaluable, and I am currently reading the book "It's All In Your Head." Lab results have shown:
High triglycerides 159 (ref <150)
High glucose 119 (ref 66-99)
Low to none FSH <.7 (ref 2.5-10.2)
Low to none LH <.2 (ref 1.9-12.5)
High C-Peptide 4.3
High 24 hr. urine 72.8 (ref.4-50)
High Prolactin 98.8 (ref 3-30)
Suppressed the cortisol with 1 mg dexo test

I'm waiting on the results of the saliva and 8 mg dexo suppression test.
Physically I have:
Large trunk,I look rather pregnant, small arms and legs
Large thin purple stretch marks
Bruise easily
Wake up twice nightly, this is a more recent thing
I tire easily and can over react to small things
I know heredity is not always involved, but my mom had a hyperparathroid. She had surgery to remove the problem.
All of this, but the MRI shows no tumor. The results came back as in normal range.
My endo says that we'll redo the 24 hr. urine, and that she'll see me in June. I really think the labs have shown a problem, just not the MRI. What should I ask or do to continue to pursue the problem and find a resolution?
Thanks for your help!

First response on the bulletin board:

I wish you the best in your search for answers. It is very important that you get to a qualified physician who can help you. I am in remission from Cushing's. Your lab work looks familiar to me. Please contact me if I can help you in any way. I would be glad to share my experience with you.

Response 2:

You have high prolactin and high cortisol. I happened to have that and as much as the docs were in denial... they found two distinct lesions once I had surgery. Sadly I had to wait 12 years. Another friend of mine had the same. Make sure you get to the best doctors possible and test all of your hormones.
Up to 40% of the tumors hide - one of mine hid for 12 years so a normal scan is nothing. The fact that this doctor does not know that is sad sad sad. She is not an expert. You can find the tumors other ways - even by sending the films to a surgeon who can see more than a radiologist. Get more testing for sure, but get copies of everything and learn about it all - and make sure you are happy and know what is going on.
Ask more questions!

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Dear PNA,
I was diagnosed by my wife and subsequently confirmed (IGF-1 level was 1,243, then about 1,150) - within the past two weeks. The MRI revealed .7 X .8 X 1.1 AP cm soft tissue nodule, equating to a borderline macro adenoma, according to my endocrinologist. From my understanding, about 50% of my doctor’s work is pituitary and I have been advised that he is the best in my city for my condition. He (and others that should know) has referred me to Dr. A, neurosurgeon.
While reviewing the MRI with me, Dr. A discussed using “interactive MRI” during surgery, I believe because he said my tumor was situated between carotid arteries only .8 cm apart. He said normally that range was about 2 cm and made the surgery more challenging, but he had encountered that before. He seemed evasive about predicting outcome of success with my surgery; however, I was able to get my appointment with him moved up from June 4 to May 7 with help from an anesthesiologist Dr. on staff there. I had probably not done enough research and therefore did not have an adequate list of questions.
My wife, (an RN and Clinical Director, with an MHA) accompanied me to meet with both doctors. As a result, I was less prepared and educated for both meetings - figuring she would know what to ask. Since then, I have spent hours researching this and have concluded that had I taken more aggressive control of my health concerns years ago I probably would have forced a diagnosis. I have begun questioning his nurse and understand that he does about 200 pituitary surgeries per year.
Now, at age 55, I can trace my symptoms back 10-20 years. The last five years have been increasingly difficult as I have most symptoms. Chronic fatigue has led me to quit working (I was a Sales Executive) and I really ran out of the energy required). I have had two carpal tunnel surgeries within the past 12 months and have been treated for sleep apnea for about 10 years (I am a CPAP user). Soft tissue growth has given me constant allergy problems and I am almost 1 year into allergy injections. My jaw and forehead have changed, my hands have swelled, my feet have widened, and I have low grade headaches almost daily. Having learned about this disorder, I am now more aware of all of my associated problems. I believe my eyes are beginning to be affected, with minor fuzziness, and I will see an ophthalmologist next week (I got a referral from my endocrinologist and neurologist). I am scheduled to see the ENT who would assist in surgery next week as well.
Given my history and very low quality of life I have a sense of urgency to move to surgery but have not had time to seek a second opinion and identify appropriate doctors at a Center of Excellence. I expect to get a surgery date soon, and it could be the end of May or early June.
I ordered the PNA resource guide and hope to receive it early next week. I need help in asking the right questions. One concern I have with my experience with the doctors’ offices is that they do not make it easy for me to get my medical records. I have requested them all and told them I would pick them up next week. However, the neurosurgeon’s nurse suggested that the doctor wanted to keep my MRI CD until after surgery. As a result, rather than confront her, I ordered another copy from the film library and will have to pay $17 and indicate to which physician this will go.
This attitude is very concerning to me. I hope to identify one or two Centers of Excellence and figure out how to make contact with the doctors and get my records to them.
I am willing to go anywhere and will pursue this with vigor. I do not know yet if the insurance coverage outside of my hometown will be a problem. Can you help me streamline this process? I need help identifying these facilities and doctors, what questions to ask, and any other considerations to look for.
Any advice and response is much appreciated.
Thanks.
- Patient

Dear Patient,
What you are doing currently is the direction in which you should follow. Getting your MRI is very important and getting educated on the subject matter is extremely important. I think you need to first get the Resource Guide Book, read it and from there, you will have a better idea in your own mind on how you will formulate questions for your new doctor. You need a good pituitary endocrinologist first who can look at your MRI and your other test results and then, between the two of you, you will determine the next course of action. I think that you have it pretty much figured out that you do need to seek a specialist in this field. It is alarming that your current doctor will not release your MRI and does not give you any specific outlook after surgery. Yes, go to our website under Hospital/Medical centers and seek one that is the nearest to your area or state. I think that overall once you get yourself into a physician who is schooled in the field of pituitary medicine, you will have more hope and a better feel as to the next step. We cannot give you specific names of doctors by law but what we can tell you, is that you need one who knows about pituitary hormonal issues. I will forward your e-mail to another expert in this field to see if additional information other than I have stated can be passed along to you. My best to you. – Barbara Shriber, PNA Patient Relations Specialist

Additional response, from PNA CEO Bob Knutzen:

Dear Patient,
Clearly your previous doctors were idiots. Your symptoms, from carpal tunnel syndrome to growing extremities scream acromegaly. How many surgeries like the one contemplated for you has your surgeon performed every year for the past 5 years or more? This is your life we are talking about. Unless you are a willing victim, why would you submit to surgery by anyone less than a recognized expert! At the least, get a second opinion by someone who works with this every day!! Remember, 20% of the population will develop pituitary tumors. Why don't the doctors there know how to diagnose them sooner? Good Luck.
- Robert Knutzen

Dear Barbara and Bob,
Thanks to you both for your responses. I have the guide, have read through half of it, find it most helpful. Hopefully I will have a 2nd opinion appointment established by end of week. Are you able to set my expectations with regard to timeframes I may incur—for example, consultation with appropriate doctors to review records, labs, and MRI and then (if agreed) lead time for scheduled surgery. Based on what I have been told and what I have learned, surgery is appropriate. My quality of life is so bad I cannot wait very long. Regards.
- Patient

Dear Patient,
You must give yourself an extra couple of days. Yes it is urgent, but if done wrong you will suffer permanently! Look in the book and on our web site. Call the Centers you are interested in. Tell them it is an emergency. You tell your insurance company what you want to do and where. Tell them they must have forgotten about pituitary tumors when they wrote your policy. It is not quite like a hangnail! Fight them, appeal, go to the insurance commissioner if you have to, but you are entitled to a second opinion. Tell them it is urgent!!! Good Luck. All of it should only take three weeks from today.
- Robert Knutzen

Dear Bob,
Thanks for your advice. I will see two doctors from your website soon.
- Patient

Dear Bob,
Thanks for your advice and your work with the PNA. I found the patient guide to be invaluable. Once educated, I was able to focus and move forward. I just returned from a most insightful trip, meeting with multiple doctors from your website. All three spent considerable time with me; I did not feel rushed, they were considerate, respectful, and informative.
I have scheduled surgery in mid-July with Dr. A and anticipate getting an octreotide injection next week. I now feel confident and most optimistic that I am on the path to recovery.
Thanks again for all that you and the staff do. Regards.
- Patient

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Dear PNA,
My sister had her pituitary gland severed 8 yrs ago from a botched brain surgery. She is 53 yrs old now and my question is, will she ever get better? Even with all the meds and trips to the hospital she is always sick. Please answer. Thank you.
- Patient’s sister

Dear Patient’s sister,
Which hospitals, which doctors? With expert help many possibilities open. With untrained/unskilled help she simply won't get better on her own.
– Robert K

Dear Mr. Knutzen,
We live an area with one hospital and the doctors are not professional when it comes to the pituitary gland. I once mentioned one medicine my sister takes DDAVP, the nurse thought it was a song!!
- Patient’s sister

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Dear PNA,
My twin and I have had a post-bilateral adrenalectomy, and have developed severe neuro-muscular issues. So far, we have not been able to find a doctor to help us.
We both had Cushing's disease and a prolactinoma. We both had bilateral adrenalectomies. We do not live in the same state but we have seen some of the same doctors.
Our symptoms are something like myasthenia gravis with proximal weakness, trouble swallowing, walking. She also has breathing issues (severe). We have seen doctors, separately, at some well-regarded hospitals and clinics, but it seems that no one can figure this out. Some are blaming this on the steroids from the Cushing's, others on too many doctors (it took me over 12 years to get diagnosed, her many years as well).
Is anyone else out there like this?
Does anyone have any idea what this is?
- Patient

Dear Patient,
This is only an untrained thought, but could you have spinal stenosis, or bulging discs in your lower back as a result of calcium buildup (or deprivation) during a long time of suffering with Cushing’s? It’s just a question.
- Bob K.

Dear Bob,
Thanks but I have no pain like that per se. My twin does, but has no physical abnormality that shows up in testing. I do have bilateral frozen shoulders (which makes doing anything difficult) and she has ultra-weak legs and uses a power chair. Orthopedists and neurologists do like to say steroid myopathy, but it has been more than two years since our steroids have been at normal levels (since our adrenals have been out).
Really, the issues started months after the recovery after the adrenals came out. We both thought that after the BLA, life would finally get back to normal, but whap - we got hit with something else and now we are back on the limbo train of no diagnosis again. They keep vacillating - it is related, then it is not. Then they gave up. We are just wondering if there are more people out there.
- Patient

Dear Patient,
Some autoimmune disorders flare after successful treatment of Cushing’s so they probably should look into things like dermatomyositis, PMR, etc.
This, so far, is the best answer I have. (It may be perfect). But you need a Center of Excellence to help and treat you.
- Bob K.

Dear Bob,
She went to ABC Clinic. I went to YXZ. I got a bit further in that I got complete testing and a muscle biopsy but in the end, we have baffled them. They tried to treat me with IVIG and I almost died from the side effects so now all is on wait and see.
Both of us were professionals, now we are disabled. Both of us are frustrated. We keep trying, but we have no idea where to go anymore. You would think that it would be limited to one freaky rare disease per body, per lifetime... huh? Damn!

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