Pituitary Network Association - Highlights Newsletter

Good Morning Mr. Knutzen,
    I am from Ecuador in South America. My daughter is 11 years old and has growth hormone deficit. She also has a micro adenoma in her pituitary. I would like to know if this tumour is producing the deficit. Could she use growth hormone? She has to take a surgery or pharmacology treatment. I have all exams about this disease. Test of growth hormone, magnetic resonance, test of insulin, etc. My husband and I are desperate, please could you help us? Thanks
- Worried Parents

Dear Parents,
   Without removal of the pituitary tumor there is no guarantee that growth hormone will work and that it might not do her harm. A very good pediatric endocrinologist should first examine her, then a pediatric neurosurgeon. You should be able to find these experts both in Brazil and Argentina if not in your own country. With proper help she should have a full and rich life and make you a grandmother. Have your doctors in Ecuador help you do the research for experts. Buena Ventura??. Good Luck. Of course the experts exist here in the U.S. also.
- Robert Knutzen

Mr. Knutzen:
   Thanks for your answer, but I have visited a pediatric endocrinologist. She is my daughter’s doctor. In Ecuador we do not have any pediatric neurosurgeons. I could go to U.S. more easily than Brazil. Do you know any doctors in Indianapolis please? I need your help.
– Worried mother

Dear Worried Mother,
   On our web site (www.pituitary.org) you will see the only experts we know of. I am certain that at the University of Virginia and the Children's Hospital in Los Angeles and at the University of Wisconsin as well as University Of California, San Francisco there are experts who can help. God Bless, we wish your daughter all the best. Good Luck.
- Robert Knutzen

Dear PNA,
   Hi...it's possible that I have acromegaly. I will have some more tests done in the next few days...but from what I've read...it's a big chance.
   If I decided to go to surgery...will I get my face, body, hands, feet and everything back to normal? I live in Argentina...is there a surgeon that you've heard of in Buenos Aires?
   Thanks in advance...I hope everything is a false alarm.
- Patient

Dear patient,
   This is a very difficult question to answer. Your body will lose its swelling and excess water. That will be gone in a few days after surgery. However, actual bone growth will not recede on its own and may, if you decide, require reconstructive surgery. As for a very competent, skilled surgeon, I do not know. However, a very fine Professor at Emory University, and a leader among neurosurgeons, will get a copy of this and hopefully send you a name in Argentina. Buena Fortuna, Adios.
- Robert Knutzen

Dear Patient,
   I suggest she see Dr. A in Buenos Aires.
- From Emory University Doctor

Dear PNA,
   I have the very best news. As you recommended I made an appointment with Dr. A but as I'm away from home and did not have the means to follow the treatment with him I saw the neurosurgeon in my health insurance.
   It turned out that my neurosurgeon has very good experience with his practice and with adenomas as well. I asked for some references and at least five doctors said he was a genius and a very good surgeon.
   I loved him the second I met him. Really professional, calmed and I felt very confident. A week after that I had the MRI and the diagnosis was absolute...I had the tumor and acromegaly.
   The surgery was scheduled immediately for February 6th and after 8 days of hospitalization I'm back home with almost everything under control. My blood pressure is back to normal, my blood sugar level is normal and the thirst and excessive urination disappeared already. I have lost about 18 lbs. A mildly numb palate that I hope goes away is the only weird sensation I have.
   I have supplements of hydro cortisone at least for a month and next Monday I'll see an endocrinologist whose expertise is in acromegaly for new test and a diet.
   And all this because of your guidance and prompt response. I had no idea it was a neurosurgeon I had to see to be treated.
   Thank you all. I only wanted to let you know that the web page was the tool that led me to you and everything happened in less than a month. Thank you, thank you, thank you!!!!
My best regards,
- Patient

Dear PNA,
   My friend and I both had brain surgery in London. I won't go into details of the many incidences of negligence and abuse and libel in all too many hospitals. Sadly, 20 years on, and I'm disabled and disfigured for life.
   However, what is of immediate concern to my friend who lives in England (and myself in Scotland), is that all too many hospitals when we go in haven't a clue what diabetes insipidus is. Too often the nurses have wasted National Health Service money on doing the blood prick in our fingers/thumb and we have to humour them, when our condition is nothing like diabetes mellitus.
   We could have easily died when all too often a nurse discusses giving us insulin and once even went to give me an insulin injection, when we don't have insulin. What will happen when we are too old or in a coma to fight for ourselves? Even recently in Glasgow, where the nursing staff is exceptionally nice, I'd just come out of the surgical theatre and immediately started to urinate. I was left lying on top of a bedpan constantly peeing for (I said 7) they said 3 hours without a break when I had prolapsed discs, osteoporosis and degenerative spine. I was so exhausted with the peeing; I eventually asked to see a doctor. Although I'd never asked to see one before or after, the doctor refused to come and said it was merely post op urinating. As I knew I wouldn't last until night time when my drug was due, I had my own and when I'd come out of the anaesthetic enough, I got the drug and it stopped the urinating. Why didn't anyone in the hospital know the side effect of my disease? What if I'd not been allowed to self medicate?
   Can you imagine how you'd feel peeing non-stop for hours just after an operation? I would have been better off at home. However, although once I'd taken the drug the urinating ceased. Usually I need an injection after surgery, but this hospital didn't have a clue as they obviously hadn't got any injection to hand. But sadly this is not rare.
   When I was in another hospital, the nurse refused me my drugs for two hours in the early afternoon when I was chronically ill and failed to understand that I wasn't a nuisance patient not waiting for the evening ward round. In an Edinburgh hospital the registrar had failed to read the list of drugs and conditions I had typed up prior to admission to try and ensure they would not mess up (as all too often hospitals for some reason can't get the drugs right). But the registrar managed to forget the diabetes insipidus desmopressin. But when I asked the ward manager she totally ignored me and all too often one feels like one's in a prison hospital - they way some of them behave.
   So, not wishing to die, I had to phone an ex-husband in England to phone the hospital to give me my drug. These hospitals don't want a patient to self-medicate in order to ensure the patient gets the correct drugs...that's a laugh!
   But I would ask you to ensure that all medics and nursing staff are given training on diabetes so they aren't so foolish as to think when they read the word 'diabetes' that it is mellitus and not insipidus. One day it will cost us our lives if something isn't done.
- Patient

Dear PNA,
I am now 29, but was 26 when diagnosed. I had a 5mm adenoma. I was told it was too small to be causing my symptoms, and was put on medications and sent from one doc to another. After almost two years of this, I found this site, joined the PNA, and began researching doctors who were specialists in pituitary endocrinology but could not find anyone in my state. I knew that my choices were to stay here and continue to get more ill, or leave the state and get help. I did just that. I began interviewing doctors listed on this site as pituitary specialists and got my insurance to agree to a consult. When I arrived, I was shocked to find the difference in care. First, the doctors were appalled at the lack of care I had received and the false information I had been told. So, I ended up having my 5mm tumor surgically removed because I was not responding to medications. I wanted to become pregnant and I was told the medications would help. They did not work for me as they do for many. However, after my successful surgery and follow-ups, I was finally given clearance to begin trying for a baby. I am due next month. Please research, join PNA, and be your own medical advocate even if it means leaving your state.

Dear PNA,
   My friend is a woman of 36. She was diagnosed with acromegaly in December 2003. She had an operation in April 2004, but the tumor was not fully removed. After that she was on octreotide (Sandostatin). Since November 2005 she took pegvisomant (somavert). In February 2006 she had gamma knife radiosurgery but she was not declared stable or cured. She had other pituitary hormones checked regularly and they were still normal. She is no longer on any hormonal medication. In October 2007 she had her first child, a healthy girl, and is breastfeeding.
   Yet she still has one complaint that baffles her doctor. On and off she has mysterious and frightening attacks. The symptoms include feeling trembling and shaking inside, whereas externally there is nothing to see. It is a bit like having had a bad fright, without the fast heart rate. This feeling does not diminish for a few minutes.
   Sometimes she feels stressed, sometimes feeble, but always at a reduced level of consciousness. As if she may fall down / faint any minute. She experiences very bad coordination: she bumps into tables etc., drops things, and feels very unsure of her movements.
   Feelings of hunger accompany this. Having a snack can diminish symptoms but only when the attack has not progressed very much. If she has a substantial meal during a full-blown attack – it reduces her symptoms but does not take them away.
   After an attack she feels unwell for quite some time. A new attack sometimes strikes in just two or three hours.
   It is unclear what triggers the symptoms and what they are. A lot of “maybes” are going around: At first she suspected a connection to medication (pegvisomant), but she does not use medication anymore and still has the attacks. There may be a connection to an empty stomach, or to physical and/or psychological exertion. The symptoms seem like hypoglycemia, but blood sugar levels are normal. Etcetera, etcetera.
   Since she never knows when this will strike again, my friend feels extremely shaky about herself. She is insecure about leaving the house, insecure being home alone with the baby.
   If anybody can shed any light on these attacks, experiences them too, knows more about them, maybe even has a remedy, will they please mail me? My friend has given me permission to look for information this way. I am doing this as a service to her as she does not have the energy to do it herself. I will forward your emails to her.
   I DO HOPE THERE IS SOMEBODY OUT THERE WHO CAN HELP!!
- Patient’s friend

Dear patient’s friend.
   Try Dr. B. He is the Chief of Endocrinology and very, very good. Good Luck.
- Robert Knutzen

Dear Mr. Knutzen,
   Thanks for your prompt reaction. I will pass the information on to my friend.
– Patient’s friend

Editor’s note: If you have some advice for this person, please email Barbara@pituitary.org and we’ll put you in touch.

Dear PNA,
   I write from Melbourne, Australia. My wife has Cushing's Syndrome. It is planned that her adrenal glands will be removed in late March without an identified cause and I write to request your thoughts/ideas. We are very happy with our specialist and I thought that I would also canvass your opinion, hoping that you might be aware of new research that explains her elevated levels of cortisol.
   Briefly, her symptoms are classic of a Cushing's patient and her visual appearance is classic of a Cushing's patient. The results of the many tests have identified that her adrenal glands are the problem (not the pituitary glands). The Dexamethasone Suppression test revealed that she had no response to low level doses of dexamethasone but interestingly she did have a muted response to high levels of dexamethasone.
   Her cortisol levels are estimated to be approx. 8 times too high. There are no tumors from any MRI/other scans. Unusually she has very itchy upper arms and top of the back, normally in the evening and throughout the night, which can be alleviated by reducing the air temperature or applying a sports balm that provides a cooling sensation.
   She does not suffer from depression, alcohol abuse, high estrogen levels, acute illness or stress, and is not taking any other medication other than the contraceptive pill.
   She is in her early 30's. A possible explanation is primary pigmented nodular adrenocortical disease, which we can't diagnose until after the removal of the adrenal glands. She will have petrosal sinus sampling within three weeks.
Many thanks in advance for any help you can provide. Kind regards.
- Patient’s husband

Dear Patient’s husband,
   Try calling Dr. D (found on our web site). Though she primarily works with children she is brilliant in the field of endocrinology. I wish you the very best of luck. You write as though you are in the medical field yourself.)
- Robert Knutzen

Dear Robert,
   Thank you for the information that you have provided. I have forwarded your email to my wife. We will contact Dr. D as suggested. You have been generous with your time. I hope to email you in a few months with news that everything is fixed! Kind regards
- Patient’s husband

   I'm a 21 year old female. I have been struggling with several (many treatment-resistant) symptoms for some time, many that seem to point toward the possibility of a pituitary issue. My hypothyroidism causes a hormonal imbalance that leads my menstrual cycles to occur every 14-19 days (I am currently taking progesterone to correct this and it has been of little to no help). I also experience chronic fatigue and have difficulty remaining awake during the day (this is helped with Adderall in addition to thyroid medication). I have an inappropriate sleep pattern in that I am able to sleep 20 hours per day without difficulty, with no drug use. I often have no response to very loud alarm clocks. I also have poor circulation, major depression that is resistant to drug treatment, anxiety, and a possible diagnosis of bipolar II disorder.
   I'm working with an endocrinologist for the issue with my menstrual cycles. She recently ordered a test for prolactin levels, which came back normal. This is a frequent problem, things seem to be “normal” but I am not fine.
   At this point, I’m very frustrated, I'm concerned about the causes of some of these issues and would very much like to explore the possibility of or rule out other problems before pursuing more aggressive treatments (full HRT for my menstrual cycles, ECT for the depression). I'm waiting to hear from my endocrinologist on her thoughts regarding writing me a script for an MRI for pituitary imaging. I've called the folks at the ABC hospital and would be forwarding the results to them.
   Am I correct in pushing to try to find an underlying cause or something that all of my doctors and I may be missing? I am seeing a number of great doctors but I am treated separately and very little of what I experience medically seems to make much sense. Are there any suggestions for communicating with my doctors? I would like to advocate for myself, but I have no desire to alienate the medical professionals who've been helping me. I am not opposed to treatments, but I'm so frustrated at this point that I'd like to find a cause for some of what I struggle with, instead of somewhat blindly treating symptoms.
Thank you so much for your time.
- Patient

Dear Patient,
   Your letter is a little scary: why is your doctor treating you for an irregular menstrual cycle before he/she/you know what caused it? That is irresponsible. First, you need a thorough hormonal workup - but only under the supervision of a pituitary endocrinologist. No one else will do. Find the best, interview him/her, and then make an appointment. Do not fool around with this. Pituitary disorders can be fatal and definitely take a heavy toll on your health.
- Robert Knutzen

Dear Robert,
   Thank you so much for your reply! I actually just had an MRI (which appeared to be normal, according to the doctor who read the films), and I'm making an appointment with the endocrinology unit at a hospital mentioned on your site. Thank you again, and hopefully things will be cleared up here before too long!
- Patient

Dear Patient,
   I am despairing of your doctor. What does an MRI have to do with diagnosing you? About 40% of pituitary tumors are too small to be seen by an MRI!!!! Size has nothing to do with the damage they cause. Good Luck. If your doctors do not know this they are not the best! They are a menace to patients and society. Honesty should compel them to say, “Hmmmm, I don't know this field of medicine, let me refer you to someone who does.” You found our web site - -so could they!
- Robert Knutzen

Dear Robert-
   Thank you for all the time you've taken to get back to me. I've been trying to track down and make appointments with endocrinologists and specialists and some won't see me because I'm also hypothyroid and I'm currently medicated for that (Armour thyroid), and others don't have appointments until late May. I'm currently a self-referral. Do you know if I would have any luck in moving an appointment time closer if I could get one of my doctors to call? Also, would you have any additional recommendations on people or places to contact? Thanks so much.
- Patient

Hello PNA,
    I am wondering if a prolactinoma and hypothyroidism is a regular combination. It is certainly difficult! We know for sure there is a tumor via MRI.
- Patient

Dear patient,
   We don’t know how regular it is but it certainly happens. The tumor is where? Who is your endocrinologist and how skilled is he/she?
- BK

Dear Robert,
   Thank you for your response. The tumour is on the pituitary, secreting prolactin. I’ve had treatment for hypothyroidism off and on for 20 years. Lately it was very severe and engorgement (I am female) was increasing. My weight gain was quite marked as well. The MRI shows pituitary tumor. I was never referred to endocrinologist. I was told it is better to "live with the tumour" then put up with the effects of treating it.

Notes:
• Use of imipramine for 22 years
• Use risperdal 6-8 months
• Severe degenerating of thoracic disk causing abdominal and back pain. MRI shows "break"

Thank you, again.
- Patient

Dear Patient,
   Whose health are we concerned about here? Yours or the doctor’s? Change doctors immediately. You are not, by law or otherwise, forced to live in pain or misery. Get competent help, now!
- Robert Knutzen

Dear PNA,
   The only reason for my email is to let you know that I am a patient who has been almost totally cured from a prolactinoma. It was 9 cc before, and is now 1.6 cc. With Dostinex treatment from Pfizer, I took the first pill twice a week for a year. But the reduction in size was not significant. Then, before going to surgery, my doctors elevated the dose up to 8 pills per week, and a reduction of 20% was reached in just two weeks. So the surgery was cancelled. I never had it.
   The size of the tumor, according to the last MRI, was 1.6 cc. My current dosage is not more than 1-2 pills every two weeks. My prolactin level in September 2005, when the tumor was detected, was around 3,600. My prolactin level is now.
   In case you want more information, please feel free to contact me. I am providing this information to your institution only with the idea of helping other patients and also medical doctors with this valuable information. I live in Mexico.
- Patient

Dear Patient,
   This is very nice of you. However, this has been known for a very long time and Dostinex is frequently used in the U.S. Thank you, again. Muchas Gracias. There is a caveat, however. Almost cured is good, but not good enough. We are still trying to find the perfect solution.
- Robert Knutzen

Dear PNA,
I am seeking advice and a doctor in N.C. if possible. But, at this point I would travel anywhere! I have been dealing with this problem I believe for almost 9 years now and I need help! When I was pregnant in 1998-99 I began having terrible headaches and I had a terrible pregnancy as well. But, with the heart arrhythmia I had a CT scan normal and was given heart arrhythmia meds. About 2 months after the birth, I noticed I was tired all the time and I still had heart arrhythmia but my heart rate would fly and beat really fast. I started to have panic attacks as well so I went to see a cardiologist. He ran lots of test and told me I had a nervous heart and the rate was fast so he gave me meds for that. Soon I started gaining weight, I had dry skin, my memory was sorta fogged, like when I knew an answer but couldn't get my mouth to say it, or I'd forget things. I never had or have the energy to do things like before. My sex life is not affected because I do not have one anymore. I have to make myself have one for my poor husband. I also developed problems with my monthly period and developed an ovarian cyst and had a hysterectomy by 2004. My body aches and I have to urinate so often. Well, in 2006 I sought out a doctor to finally help me. As we were talking he noticed my left eye moved in a bit and sent me for a MRI which showed a tumor (non cancerous) on my pituitary gland. He ran lots of test and nothing!! He stated that my levels were ok. He thought maybe the tumor grows and then shrinks from time to time and he basically says I have to learn to live with it. Well, I can't. I really need some good advice and help. I feel like I am going crazy and I want to be just me again and I can't. I want to run and play with my kids and be a good wife and mom and I can't. If at all possible, could you please at least give me a name of a doctor I could see? I would greatly appreciate it.
Thanks.
- Patient

Dear Robert,
   I am a research coordinator working in Toronto at the Hospital for Sick Children. I volunteered to participate in a research project where I work which involved having an MRI of the brain. The radiologist who read the scan reported an incidental finding of what looked like a "hemorrhagic or proteinacious cyst in the inter media of the pituitary gland." She suggested clinical follow up, although she has stated that the cyst is small. Coincidentally, I saw an endocrinologist a couple of years ago because of some abnormal test results that were suggestive of pituitary dysfunction (I can't remember what the results were exactly but at first one doctor thought I had hyperthyroidism (or hypo – I can't remember which) and then another doctor found that I had abnormally low testosterone levels. There was no follow up with the endocrinologist since he retired shortly after I saw him.
   I also have some symptoms that are somewhat bothersome (I have had headaches since I was 12, I’m very sensitive to stress, and have more hair than normal in some places although not extremely so). I am going to try to get referred to Dr. Ezzat. His clinic is right across the street from where I work.
   I am just curious about the statistics and was hoping you could clarify. If one in five have a pituitary tumor, doesn't this suggest that it is something normal and not to be concerned about? That seemed to be the attitude of my radiologist. She told me about the pathology findings and said that these things are rarely of clinical significance. I am just worried about being treated and possibly doing more harm than good. I suspect that there are problems with my hormone levels and that this may have negative implications in the short and long run, but I also doubt myself at times and think that perhaps I'm a latent hypochondriac.
   Thanks for any insights/feedback you can offer. Best regards.
- Patient

Dear Patient,
   Trust Dr. Ezzat and the PNA in this. No, your radiologist and previous endocrinologist are/were wrong. First: the size of the cyst or tumor has very little if any bearing on the clinical significance of the symptoms. So far you have already been bothered/troubled and sought help, for years. What more does your doctor need to be convinced? I am not going to embarrass you by asking you more about symptoms. Tell it to Dr. Ezzat, he will tell you what treatment you need. Statistically I only have one question: Just because they are many, does that mean diabetes is not significant? The reasoning is incomprehensible. There are millions like you across the world who are dismissed out of hand, even though they go to their doctors with complaints and what to us are clear and absolute symptoms. See Dr. Ezzat and get help. It does not get better by itself as you already know! All the best.
- Robert K.

Dear PNA,
   Thanks for your feedback and insights! I hope I didn't annoy you with my questions. I'm not skeptical, but just curious. Perhaps there are people out there that are skeptical for whatever reason. I just worry about getting my hopes up as I've been let down a few times by doctors when I tried to pursue information related to my abnormal test results. It just seems like people look at you and think that because you are young and look healthy, you must be fine.
   I understand that Dr. Ezzat is a renowned expert in this area and I look forward to meeting him. Best regards.
- Patient

Dear Patient,
   He is my doctor and teacher. Get the Pituitary Patient Resource Guide. Read, read, read! Why would you be skeptical? Did you lie to yourself about the headaches and unusual hair growth? You are not annoying me, your (hopefully former) doctors are! All the best. - Robert K.

Dear Bob,
As you may remember, I am also a fellow acromegaly survivor. I have attended several PNA seminars, one in Orlando and one in Palm Desert. We are now in the process of trying to get a hold on the diagnosis of my 38 year old step-son. As of 7:00PM tonight we know that it is a very large macro adenoma, pressing on his optic nerve. He has had vision problems with one eye and also a drooping eyelid on the same eye. Of course the whole family is confused, concerned and very frustrated. I didn't meet you until after my diagnosis, surgery and recovery period. Knowing you now, I am sure you and the PNA would have made my "brain journey" calmer and more positive for myself and the whole family/friend circle. I plan to get my stepson (wish he were not a step – I love him like my own) involved with you and the entire PNA group. I hope your profound knowledge of pituitary tumors and all of our prayers will guide him through this difficult, but manageable journey.
I will be in touch with you within the next few days with more information about his tumor and to get your suggestions for neurosurgeons and endocrinologists. Very truly and very sincerely yours.
– Patient’s Stepmom.

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