Lymphocytic hypophysitis

[Jellyfish2]

Hi

It was suspected that I had a pituitary tumour and was given emergency surgery in 2010. I am on full hormone replacement therapy.   I needed further surgery for regrowth in 2011 and in July  this year had radiotherapy due to recurrence.  Initial field tests after treatment showed some  improvement but on most recent field test last week there was some degradation. I am also experiencing head pain and believe that it has returned. I am due MRI later this month but I am scared and wondered if I have any treatment options left as my neurosurgeon said he would not operate again.

Thanks

[sayokayok]

I also have a pituitary tumor along with multiple endocrine disorders.  I have had my thyroid removed 3 times.  The first was with radioactive iodine, regrew and given another dose in two separate doses.  within 10 years it grew back.  The third time it was surgically removed. like you no more surgery or radioactive iodine, if it regrows?

in 2000 I had a brain MRI which showed a pituitary tumor .  Luckily before doing surgery my doctor tried a new drug called Dostinex, it was an improvement to another drug used.  The old drug had bad side effects required several pills daily each pill made you feel awful.  I was told once a pituitary tumor is removed thru surgery the chances of regrowth is high.  This drug (Dostinex) is very expensive $53. a pill, I took 1/2 pill 2 x a week for 7 year. it remains stable.

My growth hormone was found to be flat. The doctor sent me for an all day blood test, injecting certain hormones and drawing blood at specific times. I was diagnosed with Panahypopituatarism.  I now qualified for Human Growth therapy,  since 2000 until present, I do daily injections.  I have been off of Dostinex for the past 7 years.  My tumor has remained stable enough to not cause sever symptoms requiring surgery, but it's still there.

Have you ever been offered or tried Dostinex?  I'm so sorry for you, as I can imagine how hard this life has been for you.  I have a way to help you get the pills if your doctor thinks it might help. I have a brilliant neurologist I could ask him questions or see if he has any ideas.  Keep asking questions and for help.  I've had this autoimmune disease (Graves Disease) since I was 19. I'm now 58  Under control from age 35 to 40. my mother and sister have passed away from this disease my mom 61 my sister 49. your story reminds me how lucky I am to escape what you have endured, I wish you peace and helpful hope. cathy

[TheLightSeeker]

Hi Jellyfish2 and welcome to the forum.

You must have had  total post-surgical hypopituatarism to be on full HRT.

With the understanding that LH is a rather rare autoimmune disease,
the underlying causes, may have never been addressed.
Specially in light of the fact that  further surgery was needed 2011, and radiation as of July 2014.

It is more than obvious that the expectation of total resolution with these treatments is doubtful at these point, thus the decision of the neurosurgeon, not to operate.

My opinion is that only the result has been treated and not the disease at
its foundation.
The answers are not within finding single causes.
It is likely a synergy of genetics (CTLA-4?), other imbalances -hypothyroidism?, adrenal insufficiency? TNFa inflammation- viral and bacterial load, toxicity, stress factors which lead to such conditions...

You may want to look into Orencia (a CTLA-4 fusion protein and CTLA-4 Ig based drug) or Nulojix, ( the 2nd generation form of CTLA-4 Ig) but only after:

a. You have tried TNFa anti-inflammatory therapy (biologics or holistic)
without success
b. You have done genetic testing.
c. You have ruled out or regulated low thyroid function.
TSH, T3 and T4 would not be adequate tests as you may have type 2
hypothyroidism, not indicated by these standard thyroid tests.
Free T3, Free T4 and reverse T3 would be the recommended tests.
d. Same for adrenal insufficiency, even if subclinical.
An Adrenal Stress Profile ( 4x cortisol, 2 averaged DHEA-S saliva test) would indicate this.

When thyroid function is low-same with adrenal insufficiency as it downregulates thyroid function for adrenal recovery- healing and repair at the cellular level is impaired to the degree of the thyroid/adrenal hypo-function and not taking into any other limiting factors into consideration.

Conventional doctors might not be open to all this, however, I think these suggestions deserve serious consideration.

Please note that my comments and suggestions are not intended as a substitute for medical advice.

Wishing you well.
Niko