Pituitary / Hypothalamus Failure

[OpsDave70]

Just wondering if anyone has had damage to their pituitary and/or hypothalamus because of Behçet’s. Mine were destroyed because of inflammation and lack of blood flow, as physically proven in a surgical biopsy. Also, does anyone have Central’s Diabetes Insipidus? This condition is related to pituitary failure, and it is not the same as insulin/sugar diabetes mellitus. Also wondering if anyone has had inflammation of the brain and/or high fluid pressure. Thanks!

[TrevisZierten]

Hey Dave, I've had a Pituitary problems for years where I've been told by my Endocrinologist that she is confident that it is a secondary problem to my underlying disease. I have high IGF-1, high Prolactin, low and high testosterone, high ACTH, low cortisol, but these all fluctuate in crazy ways. I have the HLA B-51 gene and severe mouth ulcers but no other ulcers. I am completely crippled by my disease. My autonomic nervous system is destroyed and this can be connected to the Hypothalamus. I also have a severe muscle myopathy where I cannot use any muscle in my body without having severe flares. I have crippling pain in my forehead that absolutely does not go away. The pain has become so severe that I feel like I'm going to stroke out from it. The pain is now radiating into my chest putting severe pressure on my heart. After seeing your post, I am sure that the Behcets has caused my Pituitary problems. I hope I can get a brain biopsy to confirm this as well. Does anything come back in your blood work via Pituitary or anything else? And Why did they decide to do a brain biopsy on you? Glad to see your post. Hope to hear back from you. Take care.

[OpsDave70 in reply to TrevisZierten]

I have autonomic dysfunction as well! Are you in the United States? I have the best autonomic nervous system doctor in the world up at Harvard. I can put you in touch with him if it would be helpful. I have very similar pain to yours. Almost scary! I’ve been getting Botox injections to help with the head pain. It works well, but I don’t like the side effects. You’ll have to weigh the benefit vs. side effects with Botox, but you’ll be shocked at how well it works for the pain.

I had an MRI to see why I had central diabetes insipidus, nicknamed “water diabetes”. It is extremely rare, and doctors will only be able to figure it out if they’re really good at endocrinology. There was a small tumor on my pituitary, as seen on the MRI, and my endocrinologist felt like it would be good for future treatment to remove the small tumor. When they got in there to remove the tumor, they also found a lot of scar tissue and the little tube that connects the hypothalamus to the pituitary had atrophied. They also determined that my pituitary was killed because of inflammation leading to loss of blood flow. Because of this biopsy, and because of my set of symptoms, my doctors are suspicious that I may have Neuro-Behçet’s, the most wicked form of the disease. I also have had severe chest pain radiating to the top of my head, along with blood pressure spikes that, oddly enough, can be helped by laying down with my back on the floor and my legs up in a chair. Totally counterintuitive, but it works when nothing else will help with the pain.

I do have some questions: Do you have POTS? Does your bladder spasm? When you do too much muscular activity, have you had your CK level checked? I recently was hospitalized after working out in the yard. Diagnosed with Rhabdomylosis. It is where dead muscle tissue gets into the blood stream (omg the painful muscles) and the cells can kill the kidneys. When you have a muscle flare, are you referring to Rhabdo??

Warmest Regards,

Dave

[TrevisZierten in reply to OpsDave70]

Wow. I can't believe how similar our stories are. I'm so glad we got in touch. I'd love to know more about your autonomic doctor. I wasn't diagnosed with pots but my autonomic system is absolutely destroyed. My brain is going haywire, causing signals to misfire from my brain to my heart and gut. Everything is super overactive so I'm revved up, like hitting the gas at 150 mph. While slamming the breaks at the same time. I'm even getting like brain and body zaps. It's horrible.

As for my muscles, my CK levels and Myoglobin are elevated after using my muscles. Rhabdo is a good way to put it but it looks like I have an actual muscle myopathy as well. I have positive ANA, RNP, SMOOTH MUSCLE and GLYCOPROTEIN antibodies. Not sure if these antibodies are actually attacking my muscles?

As for my Pituitary. I had regular MRIs where nothing showed but years ago I had an MRI that focused on Pituitary and it showed an 8mm lesion where my Pineal Gland is. A few docs told me it's probably nothing but I'm not too sure about that. I literally feel like something is eating my brain. My pain in my head absolutely never goes away and it is a 10/10. I normally cannot even read or write anything without causing severe problems. I have to find someone who is willing to take this seriously and quick because I'm afraid of what will come next. I believe whole heartedly that I also have Neuro Behcets because of the severe neurological problems but because lesions are not shown on the MRI as of now I am not diagnosed with Neuro Behcets. However, the odd part is my disease attacks me neurologically more than it attacks me anywhere else.

Oh and my bladder does not spasm. I'm sure that's not a great symptom to deal with. Do you get the canker sores? How did you get diagnosed with Behcets? Do you have the HLA B-51 gene? Perhaps this Hypothalamus is what is causing our Autonomic problems? How are you coping with your disease? I've been completely out of work for over 6 years because of it. Are you able to work? Lastly, how much working out did you do and High was your CK level after working out in the yard? Great hearing back from you!

Stay strong,

Trev

[OpsDave70 in reply to TrevisZierten]

Wow Trev, your response might as well have been written by me! Very similar. I have found that certain medications make the body zaps worse. I was on a very high Effexor dose for pain what couldn’t be controlled, and when I came off of it, I had a crazy amount of body zaps. It reduced over time. I see Dr. Gladstone Sellers in Atlanta, as he has several Behçet’s patients and has been great with helping get me on my feet. I see Dr. Gary Myerson, who is a rheumatologist. In Boston, I see Dr. Christopher Gibbons, who is an autonomic nervous system doctor. There are only a few autonomic specialists in the United States, and he is one of them. He’s affiliated with Harvard and works at Beth Israel Deaconess in Boston. My pituitary/endocrinologist is in San Francisco at UCSF, Dr. Lewis Blevins. There would be a lot of travel involved for you, but I spent over 20 years trying to find the right doctors. I feel like I have been to the ends of the earth.

I’ve been out of work for a year. The combo of Plaquenil, Humira and Methotrexate are just now starting to work. I think I may be able to go back to work in a few months.

Interesting that you also have trouble reading and that you have eye issues. You describe exactly what I am going through. I have to take a lot of time reading because my eyes and brain don’t seem to get along. Hope this helps! Where are you located?

[TrevisZierten in reply to OpsDave70]

Hey Dave,

Thanks for the list of docs. I will def look into them. I'm glad the combination of medications are working for you. I live in South Jersey so those doctors are pretty far but that is expected when you are looking for docs who specialize in our disease. I will stay in touch with you and fill you in over time. Were your CK levels elevated when you got Rhabdo?

[OpsDave70 in reply to TrevisZierten]

Yes, CK was 4900 and other things in my bloodwork were off as well. The CK is what I was admitted to the hospital for.

[bethexit25 in reply to OpsDave70]

HI there. Don't often reply just mostly read posts especially since I'm in the USA. Was thrilled to see these posts from people here. I am in New Jersey and currently in care of Rheu at Penn Medicine. We have managed to keep me under control with azathioprine but I would say just surviving not thriving. Often time my bizarre symptoms just keep them dumbfounded. Question - with your above symptoms - have any of you experienced larygospasms ?

[OpsDave70 in reply to bethexit25]

Hello. Symptoms/diagnoses include oral and genital ulcers, POTS, pituitary failure, pancreatic exocrine insufficiency, Central Diabetes Insipidus, cardiac SVT, severe head-to-toe body pain, dry eyes and probably others that I am forgetting .. Regarding laryngospasms, I do have difficulty some swallowing and have to be extremely careful not to choke. I am on Humira, Methotrexate, Plaquenil and meds to replace missing endocrine hormones. Just getting by right now. Would love to attain “thriving” status, but my current situation is a heck of a lot better than it was before treatment.

[Michja]

Hi sorry to read about all your troubles. Just wondering if either of you have tried Gabapentin? Helped my daughter with all her horrendous head problems. Have either of you had the uveitis or the pressure build up in the eye? Also just to let you OpsDave you don't need to be HLA B-51 positive to have BD. My daughter is on heaps of different medication and 4 weekly infliximab and my son and myself are just on Colchercine, none of us are HLA B-51 positive.

I was really interested to learn about the pituitary tumor as my sister has just been told she has the exact same thing. The doctors don't know how long its been there .BUT she's having very similar symptoms to you both but at 40 she's now in menopause and has a few othe issues. all related to the pituitary area. Did the specialist remove the tumor and was it encased in another cell? To explain. the Dr said it was a circular cell with the tumor inside it. Apparently not touching the pituitary gland. Please note ny sister does not have BD but does have terrible ulcers in and around her mouth. Interesting she may have BD after all?

All the very best to both of you.

[OpsDave70]

Sorry to hear about your BD. The Cleveland Clinic specialist who gave me the initial diagnosis said that I do not have the gene, but the gene is only so-so as a definitive marker. It took longer to finally confirm my diagnosis because of the gene not being present, and BD was finally confirmed a couple years later when I had pituitary surgery to remove a small tumor and a lot of scar tissue that had formed along with it. The surgeon said he clipped part of the pituitary itself as part of the biopsy, but he did not specifically say that the small tumor was actually attached to the pituitary. I assume it was because the surgeon took part of the pituitary with the tumor and scar tissue. There were “nest” cells and other cells that indicated that the tumor and inflammatory event that killed my pituitary had been there for a long time. The surgeon also confirmed that as part of the inflammatory event, the blood vessels supplying the pituitary with blood had dried up from inflammation - called ischemia. The biopsy results unequivocally showed BD, and the diagnosis led to my current treatment. I do take Gabapentin. 3600mg per day helps with the severe body pain and headaches. I have continuous migraine, and for that’s i have been getting Botox shots. The shots work quite well, but the side effects are too much for me and I will not continue with it. I was hospitalized with Rhabdomylosis a day after getting the shots, but my doctors don’t think it was the Botox. Have any of you been checked for Central Diabetes Insipidus?

I feel relieved to have met someone with similar problems as I have. My doctors keep calling me ultra-complicated, and it makes me feel kind of nervous about how long I might live. None of my doctors will tell me what they think about longevity, but the combo of meds I am on seem to be controlling my BD better than before.

If your sister is getting severe mouth sores. I would think, based on your family history, that her ulcers would be a huge red flag. Plaquenil at 200mg 2x/day is excellent at controlling ulcers in the mouth. Have you tried it? I only rarely get mouth ulcers now, and when I do get them, they are very small and heal very quickly.

Thanks!!

Dave

[TrevisZierten]

Hey Michja, I have not tried Gaba but I probably should now that you both say that it helps with the head pain. I don't have uveitis but all of my pain in my head is in my forehead and behind my eyes. There is so much pressure there that it feels like something is about to break open and burst out. I can't believe so many people in your family have Behcets. Perhaps it is hereditary. I do have the HLA B-51 gene but who knows what that really means? Although I have the gene and almost constant mouth ulcers, I still do not fit your Happy Meal, mouth ulcers, genital ulcers, uveitis Behcets Diagnosis. However, I really do think that diseases have minds of their own, as do our bodies have different blood types, chemical makeup and also, we all come from different backgrounds which is what makes us who we are today. So no wonder why we see so many different types and spins of this disease that we call Behcets. Perhaps each one of our unique bodies are trying to fight our unique disease in its own unique way? Having a disease that works outside of the corporate box has helped me to see things in a whole new light where I can see things as clear as day that I could not see before. I pray for peace And closure for your souls as I feel, at least for me, that having closure and peace in all of this is better than even having less physical pain at times. I am not happy about getting sick but I know it has made me a more humble man than I was 8 years ago. I can now see people who I could not see before and when the good Lord passes by my face, lo, I see Him. Back then, I could not see anything besides my own desires and dreams but perhaps not only for me, but for others also, it is good that this thorn in my flesh took me off my tracks. For if I never got sick, everything, and I mean everyone in my life would be different today. There is no possible way that I would have the privlidge or the honor of meeting wonderful people like yourselves in this here chat group. For even if I did meet you guys, I could not possibly appreciate you guys the way I do now. For what good is it to know someone if you do not appreciate them? So maybe this disease was not in any way written down in my own playbook but now that she sent an all out blitz when I least expected it, I have to as a man change my gameplan if I want to survive. I wish you all well and my prayers are being sent out into both of your households. Thank you for sharing your stories here. God bless!