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Date of last update: 10/17/2017.

Forum Name: Endocrinology Topics

Question: Panhypopituitarism?

 Marijo - Sat Sep 08, 2007 1:22 pm

Hello! I am a 52 yr. old Female. My past medical history is as follows: Psoriatic Arthritis (methotrexate- 5 tabs wkly) Ulcerative Colitis(Asacol), Hypothyroidism (recent), Latex Allergy (I mention this as many of my problems seem to be with my immune system), Fibromyalgia.

About 8 months ago, I was becoming increasingly fatigued, along with joint pain, memory loss, and weight gain. My Rheumatologist suspected thyroid problems, so she took thyroid funcion tests. Both my FT4 and my TSH came back low. To try and condense this, rechecks confirmed this. The most recent results are: TSH 0.470 (0.4-4.2)
FT4 0.5 (0.8-1.9)

A Free T4 Eq Dialysis was drawn at the same time with the results 0.8 (0.8-2.7)

I am now on Synthyroid, but my Endo followed up with other testing. My Pituitary MRI was normal - "anterior pituitary small but within normal limits". The other labs are towards the low side (i.e Cortisol was 8.1 (8-25). One concern is that these labs were not AM draws, so they may not be accurate.

My ICD diagnosis read "Panhypopituitarism", but I do not think anything has been confirmed yet.

I have an unusual family history; my father died of breast cancer, and all 5 of my siblings have or had autoimmune diseases. (Two of my siblings have passed away). I used to feel pretty healthy, but in the last 5 years or so, I become ill easily and seem to catch everything going around.

What is the possibility that I do have panhypopituitarism? What other testing should be done? Also, my PCP put me on thyroid medicine prior to me seeing the Endo Specialist. After 6 weeks on it, my TSH had dropped to 0.028 (0.4-4.2) and my FT4 had only risen to 0.7 (0.8-1.9). It seems as if I need to be on a stronger dose, but wouldn't that completely shut down the TSH? My Endo had me restart the medication and I am to see her again after I have been on it for 6 weeks.

Whew! I know that this is long, and thank you to anyone who has stayed with me thus far!

Any comments from anyone as to what might be going on with me? Thanks!!
 cmbajb - Sun Sep 09, 2007 5:48 pm

Hi. I am not a medical professional, but I am panhypopituitary and have been for 6 years. Your low TSH in combination with your low FT4 does indicate a pituitary problem. At this point, the value of your TSH becomes meaningless and the goal is get your FT4 and (AND!) FT3 into the upper 1/3 of the normal ranges. Since this is a pituitary situation, I would speak to your doctors about testing all your pitutiary function hormones: DHEA, testosterone, FSH, LH, estradiol, IGF-1 (initial growth hormone test), a.m. and p.m. cortisol. With these test results, you can see a pattern. If IGF-1 is low or low-normal, a growth hormone stimulation test should be done. If cortisol is low, an ACTH (the hormone the pituitary produces to stimulate the adrenals to produce cortisol) should be done. Here is my personal caveat about stimulation tests: If an artifical substance can be introduced into the body to stimulate the pituitary to produce a hormone, how does anyone know that the pituitary will produce that same result when left to its own functioning? An endocrinologist that is very experienced with pituitary issues should be seen.
 Marijo - Sun Sep 09, 2007 7:11 pm

Thank you so much for this information! It really does help! Where did you obtain all your knowledge if you are not a " medical person"?

I am trying to find out more information, but am not really sure how to search.

How were you first diagnosed?

Can you recommend any other web sites?

Thank you again so much!

 cmbajb - Thu Sep 13, 2007 4:18 pm

Gaining knowledge on your own about your medical conditions is crucial if you want to be "in charge" of how your health progresses. I started with a rare disease back in 1995, Cushing's disease by way of pituitary tumor, then as a result of surgery became panhypopituitary. Doctor's often have limited knowledge about rare diseases, sometimes by choice, maybe because they don't see many of us type people.

Getting diagnosed with Cushings, and then Panhypopituitary, was on my own. I knew my body was going wrong, and doctors kept telling me all my tests were "normal" and maybe I needed psychiatric help. So I had to research. Physician's Guide for Rare Disorders helped me alot (reference book in libraries). And now the internet. Online support groups are crucial, but you know the cautions about them. Yahoo Groups, I believe, has a hypopituitary group.

Here is a site with a great overview of pituitary issues. They miss telling female hypopits that testosterone replacement is being done now. I use Androgel.

Also, when you have a doctor's visit and/or labs done, you must get copies so you can get a feel for results and learn terminology. Doctors can be dismissive of patients, but less so when you are knowledgable. Good luck!!!

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