Hormone replacement therapy to combat TBI?

Depending on the symptoms, in our practice we do sometimes screen for hormonal deficiencies, and work closely with our Endocrinologists if any abnormalities are found. TBI can increase the risk for pituitary (a gland at the base of the brain that produces hormones) dysfunction and we think the risk is likely higher with increased TBI severity. So far, there doesn’t seem to be much evidence that everyone who experiences a TBI needs to be screened for hormonal problems, we let symptoms guide decision making, and test and treat as needed for this less common situation.

More common after TBI are balance, word finding, and mood changes.

Interesting question and answer. I had a TBI where my face hit a heavy glass door so hard it broke my neck at C-3 level, Tore ligaments in my neck from c2-C5 and I was unconscious between 39-59 minutes. that was 14 months ago. My BP which was normal the day I fell went almost daily of over 200/139, sometimes as high as 230. They just did a work up to see if I had a tumor on my adrenal gland. After the accident they did find doing a CT scan with contrast (with the excessive high BP) a tumor that is at the base of my head sitting on an artery. No tumor found on my adrenal gland but all the hormone numbers, where some were double or triple the normal numbers, were found. Not high enough to indicate a tumor but very high. 7 functions show as "abnormal" I feel awful, I cry at everything, and I am just not myself. It is being ignored and no one wants to discuss the fact how hard I hit my head. I also have vision issues on the one side and my nose is constantly dripping clear liquid. It is not brain fluid they checked for that and said it's allergies ( I do not have allergies). I'm ate a loss and just miserable....Any idea where I should go next...I just can't live like this. I also live with Ehlers Danlos Syndrome (the connected tissue type) and after foot surgery and a mishap I have type 2 Reflex Sympathetic Dystrophy....

Hi, @sadivari and @m2murphy256. I wanted to check back with you and see how you are doing.

sadivari - Are you feeling at all more like yourself? How are the vision issues and the dripping from your nose?

m2murphy256 - how are the balance problems and the word finding problems you mentioned?

Thank you for asking. I am about the same, vision is worsening in one eye and nose still drips without warning. A bit embarrassing in front of people. My vision on the side where my forehead is dented blurs to the point where I can not read. Eye pain behind the upper lid wakes me at night. I was able to get my BP down from in the 200's (upper #) for over a year and a half back to normal range with a combination of 3 pills. In testing for why my BP was as high as 240/169 I had kidney tests done. They thought I might have a tumor on my adrenal gland. I did not, but the blood results show my hormone numbers were double and triple what is normal. I see an endocrinologist Monday. I've read a TBI can affect your hormones. They did find a tumor at the base of my head sitting on an artery. Told it's doing no harm and my head injury has nothing to do with any of my symptoms. I see a different concussion clinic on the 12th. Maybe someone will take this seriously........but not likely. thanks again for checking back.

Happy to check back with you, @sadivari. Glad to hear you are continuing to consult experts with the endocrinologist visit and the concussion clinic. I'm sorry to hear you are not feeling taken seriously.

I can't imagine hitting my head so hard on a glass door that it broke my neck. That is a really hard hit. Having worsening vision and eye pain would be tough, as would nose dripping without warning. I have coughing with no warning at times (related to allergic asthma in my case). It's embarrassing, especially if I'm at church, a concert, a funeral or any large gathering. I sometimes put a cough drop in my mouth to mask the cough for a bit. Sometimes I just bite the bullet (cause it calls attention to itself and looks weird) and go to what really helps me with my cough, calming my airways with inhaling some Albuterol, right in the middle of an auditorium, when some other noise can mask it a bit.

Nice that you were able to get your blood pressure down to normal range. Sounds like you are working hard to get to the bottom of all this.

Hoping that some other members who've talked about TBI can provide some support as you seek answers for these symptoms since you hit your head, especially the high hormone levels. They also may have some ideas related to the worsened vision, eye pain and tumor at the base of your head. If you've not met already, please meet @lakelifelady @slowrunner1 @lkas @IndianaScott @dawnpereda @celia16 @kayabbott @hevykevy @gregd1956 @celia16.

What pills helped bring your blood pressure down to normal? Which hormones were elevated in the blood test?

As we get older our health issues become more complex and treatment more difficult. Are you near a teaching hospital where your mix can be evaluated, more so than unconnected doctors? Have you seen an ophthalmologist regarding the vision changes; dry eye, pressure, or macular issues can be treated and those should be addressed to avoid damage. If dry eye is a factor, then preservative-free eye drops help and gel drops before bed (been there, done that). My moderate TBI was 32 years ago and I still have word-finding problems, but now have a normal EEG, so doctors don't always see the fine print. It would be good to keep a journal of all your symptoms, including taking BP measurements. I hope your endocrinologist visit bears fruit and that you are able to get answers to your health problems, but it is a frustratingly slow process.

Slowrunner here. Oof, you are a fighter! I am a wimp in comparison. That said, the strength you exhibet is to be admired. I marked the 12th on my calender to remind myself to think of you. You might want to take a printed version of your email with you. That is what I do; I can write ok but I have difficulty expressing myself orally.

Dear @lisalucier

My blood is not one of my “programs”… I don’t mess or check or see if my blood. I go to my family & TBI doctors twice a year and they check my blood andmy blood pressure is great, but… brain-injury the lost of my memory, understanding, working… it’s funny in a way, decent (sp?) physical is ok, but brain-injury is inside me…

Thx,
Greg D. @greg1956

My TBI happened during a car accident where I was shaken and whipped around. I was on blood thinners and it caused a brain bleed that is now, ten years later, a small spot of encephalopathy. The accident broke my neck, six ribs, punctured a lung, gave me stress fractures down my spine and my right ankle. I was in a neck brace and a turtle shell ( a vest type thing to keep ribs stable as they healed) for three months. I still have an exaggerated stress response where my arms fly up and my hands shake or I scream at unexpected loud noises or we have a near miss in the car which causes the above.
At ten years out I still have issues related to accident. My neck did not heal together properly so I am in PT for that and for my lower back which is painful much of the time. When I go for a walk it feels like I have a bobble head, I lurch to the right sometimes and it feels like everything that has healed has healed up crooked.
Being in a large group where many people are talking at once is hard for my brain to tolerate, as in overloaded. Too much noise especially from gas powered motors drives me nuts. Very bright days and bright lights often give me an aura followed by a migraine. I wear dark glasses in the house often because we have big windows facing a lake which is very bright.
I must sleep on my back as I cannot turn around because of my neck and back.
I have trouble with word retrieval often and my speech cannot keep up with my mind.
But enough of aftereffects. What do I do about these things? In a crowd I take frequent breaks and find a quiet spot for a bit and do deep breathing. I meditate to quiet music. I play the piano, flute and sing in a great group of older people . I read and exercise every day on a stationary bike and go for my 15 walk. I allow myself little junk food and try to eat healthy as I can. I do have a glass or two of wine at dinner but at no other time unless special occasions or Holidays. In summary, choose to do suggested things to help yourself, do soulful, mindful things, exercise if you are able, keep in touch, understand your condition, be gentle with yourself and do not put too many shoulds on yourself. And now I am too tired to go on……another issue. Fatigue , mental and otherwise. Good luck.

Hi Lisa....thank you again for your message....My issues go so deep it seems impossible for one person to have gone thru a life of weird things happening to them. That is one reason I am having such a hard time with doctors, especially here in Georgia, taking this as a serious issue. You spoke of coughing drawing attention to yourself. With my leaky nose I sound like I'm sniffing cocaine!! Constantly sniffing. Born with club feet, being harassed my entire childhood for wearing what looked like brown combat boots (today's bullying) I called it being made fun of back in the 50's. Managed that, injured on my job in my late 20's and went on over the years to rupture and tear 9 main body parts. Took me until I was 70 to discover I have Ehlers Danlos Syndrome, the genetic connective tissue disorder. Had foot reconstruction when my toe became dislocated and my whole foot curved, surgery accident caused by an unlicensed Physician's Assistant and medical records falsified so the surgeon wouldn't lose his license. I ended up with RSD/CRPS type 2. Georgia Medical Board knew this and did nothing. that was in 2017, I was in my 60's. It took years to get over the emotional harm that did to me. I finally let it go because no one cared and I was doing really well, both physically and mentally. Then I tripped going in to that restaurant where their walkway was not maintained, a brick was loose and raised 1/2" above the others. I must have stumbled forward 10 ft. picking up speed and no way to stop. Luckily I was with my best friend who was a nurse for 40 years. It took over 30 minutes for EMT to get there and 911 wanted her to roll me over. They estimate I was unconscious for between 39-59 minutes. Thank God she knew not to do that and also lucky my neck broke at the C-3 level but broke in place horizontally. The people responsible have spent the past year and a half going over my medical records going back over 30 years. I never signed the release for them to get these records. So much for the HIPPA law. I've always made the most of this but it's been hard on my family, I only have a husband and a daughter, 2 grandchildren. You asked about what pills finally brought down my BP. I take three in the morning, Nifedipine ER 30mg. Nebivolol 10mg. and Olmesartan 20 mg. and before bed I take a second Nifedipine. I would have to go into my medical records to get the hormones that are way off. The worst is hot flashes again after all these years, and I'm sure my hormones are the cause of my craziness. My whole life I was happy go lucky very social person, I tend to get nasty now......hopefully the new concussion center might shed some light on if and when I will get better. I have a lot of life left in me, I'm not going to sleep it away. the exhaustion is beyond anything I have ever been through.....