pituitary tumor/thyroid problem--questions about joint pain, etc.

[westerly17]

I am a 34 year old female.  After ceasing birth control pills after many years this April, I never had a period.  I also started having lots of joint pain.  Esp. in the back of my knees, and wrists.  My wedding ring did not fit anymore (hands swollen).  In general my whole body hurt.  The glands in my neck seemed to hurt often.  After a couple of months of this I went to the doctor.  My ob/gyn found my prolatin level high (in the 80s) and I then had a brain MRI, which showed a 2 mm pituitary tumor, which is pressing on my optic nerves but not causing vision problems.  So I went to several doctors, neurosurgeons, endocrinologists, and an eye doctor.  The consensus was to try Cabergoline for 6 months (unless my vision becomes affected) and see if it will shrink the tumor.  

They also found from the blood tests, that my thyroid was overactive, I had a small goiter, and I was anemic.  I have been on the medicine for the tumor for three months now.  My thyroid levels are improving and anemia was gone on my last blood test.  So they have decided not to treat the thyroid yet but watch the levels.  

My question is: I still have terrible joint pain in both my wrists esp. when I open my fingers to throw a ball to my dogs, or use scissors, etc. (which none of the doctors can explain) and I also have pretty bad pain in my neck, a little over from my thyroid.  And I wake up in the night with very dry feeling eyes--I feel like a need eye drops.  Could any of this be related to thyroid or hormone issues or the tumor?  I was a perfectly healthy feeling, athletic person before I stopped taking birth control pills  (I think it masked all my symptoms).  And now I just don't know what out of my issues is causing these symptoms, and I cannot find an explanation.  Thank you!  

[Mark Lupo, M.D.]

A 2mm pituitary adenoma is very small -- but the high PRL level suggests that it may be producing PRL (unless you are on other meds such as psychiatric or some GI meds that also increase prolactin).  Would also test IGF-1 as a screen for excessive growth hormone -- this is produced by the pituitary and can cause joint pains.

The other thing to look into is thyroid auto-immune issues and perhaps other autoimmune issues.  Also make sure the thyroid levels stay stable (ie, that the abnormality in thyroid labs did not reflect a thyroiditis which could now progress to hypothyroidism).

[DianeB88]

I have been very sick for about 8 years now and I asked to have MRI done of Pituitary.  It did show a pituitary 4mm microendenoma.  I also just had a thyroid ultrasound done and I have a solid complex nodule I am waiting for biopsy appointment.  I have sereve urination when the pain behind the bridge of my nose and right eye are active.  I know that this is small but there are days that the pain here is unreal.  Do they fluctuate in size???  I know that if I take certain medications for cold or pain I irritate it and it gets worse.  This has become severe over the past several years. This was triggered when I had a recent CT of my abdomen and Iodine contrast was given. I ended in the ER that evening with much pain in upper chest and an attack again of pancreitis.  My main question is this.  I do not show any over secretion of hormones on testing and I was told that I should just live with this and adjust.  I was very upset on this attitude.  Porlactin was only a 3 as low as it gets. GH normal.  But there is nothing indicating ADH or ACTH testing being done.  My question is why.  Frequent urination is a big problem with me. I have times that I can not speak because my mouth is so dry and I am very thirsty.  My aunt takes DAVPP for diabetes Insipidus.  My micoadenoma is in the posterior of pituitary.  Why would he tell me to just live with this and nothing can be done for me if there was no testing on these.  I need to get better.  My electrolytes are normal.  I did find a few that my sodium runs on the high normal end but not out of limit.  Should I push to have ADH and ACTH tested.  I am concerned with hypopituitary for it has been so long going on and I can not think or work any more.  I want so much to get my life back.  Need advice please.

[Agape2]

Keep a positive mindset. Gather all your information. There are some good doctors out here. Find someone that you feel comfortable with. Someone you can talk to .If need be get second opinions. If there is a mass on your pituitary is it on the anterior or posterior side? . There is a reason that I ask.
I wouldn't think that it would be fatal. It probably is treatable with great results. I will check back. Have a wonderful day.

[Agape2]

I too had severe joint pain or so I thought... I had Xrays and there is no degeneration in my joints. I too was very athletic. The pain was coming from my muscles. Heat would help but at times I felt like I would not be walking soon. The hyperthyroidism from Graves disease was causing muscle wasting in my case.My muscles were being bathed with that excessive thyroid hormone. It was a signal from my body telling me that something is wrong. Bottom line after all we go thru to diagnose the condition  I had the RAI. I feel better than I have in years. My cognitive processes have improved dramatically and I am regaining a lot of my premorbid strength and energy. My hair has stopped falling out and I have a nutritional supplement regimen that I follow to augment my Synthroid therapy.If anyone would like to know the specifics of my nutritive support I would be glad to share. You must keep a positive mindset first and foremost. Someone said something about dry eyes..yes I have that too but not as profound now. I use Refresh drops and my opthalmologist states that the Graves didn't impact my eyes..probably due to my own nutritional augmentation. Now that I am hypothyroid I do see that now I will have to watch what I eat. I have gained 10 lbs since I started my therapy but its coming off soon. It just sneaks up on you but you don't have to become fat.I have a great endocrinologist. He is no joke! I am truly blessed. Oh, I had wrist,ankle pain and swelling too. It was so bad i felt that if you poked me with a pin i would pop. It was from the thyroid disease which was causing water retention etc.I took methamizole for about 6 mos,od'd on it(It built up in my system) and had a thyroid storm in January,ablation in Mar,began Synthroid in June 07,feeling great.

[Amry12]

I had my first mri today and my doctor says I have a 2cm mass on my pituitary.  I am suppose to talk with the neurologist sometime this week or next.  I have the same symptoms...wrist pain, high prolactin levels, feel tired most of the time.  Not sure what to make of all this.  Is it cureable?  Will the mass go away?  Is it fatal?

Any insight would help.

Amry

[westerly17]

I am sorry I mistyped, I meant it is a 2 cm tumor.   It is apparently a "hyperintense, cyctic mass expanding the sella and bulging into the suprasella cistern."  I was not on any other medications that would have affected prolatin.  The Cabergoline has stabilized my prolatin now for 3 months but the joint pain is still in my wrists.

I did have my growth hormone measured and it was normal.  The endocrinologist did say that he thinks I have thyroiditis.  When it was first measured my T3 was 187 and TSH was .01   Another test around the same time the TSH was .008.  More recently it was measured the T3 was 118 and TSH .05  But he could not explain the joint pain.  Also, overactive thyroids run in my family--my father had his shrunk with iodine pill.  Any thoughts based on the additional information?  Thank you!

[GravesGirl]

If you have thyroid disease, it's probably auto-immune and you could have some rheumatoid athritis too,if you have one, you can have another auto-immune disease, you can have blood tests for this too, and be put on meds for it That would help your pain and inflammation. Look up rheumatoid athritis and see if any of your symptoms match.