Pituitary Tumor

[GirlDK]

Update:

2001 November - inflammation in the thyroid gland
TSH 0,00↓ mU/l [0,1-4]
T4 135 nmol/l [60-140]
T3 3,30↑ nmol/l [1,10-2,50]
No treatment because the RAI showed normal activity

2004 March - inflammation in the thyroid gland
TSH 0,007↓ mU/l [0,1-4]
T4 120 nmol/l [60-140]
T3 2,61↑ nmol/l [1,10-2,50]
T3-test 1,32↑ working unit/l [0,75-1,25]
No treatment because the RAI showed normal activity.

2004 October – Tumour in the right side of the pituitary gland 6x6x5 mm
MRI-scans shows following:
30/10 2004    Pituitary gland tumour in the right side, size 6x6x5 mm, SKEJBY SYGEHUS
06/12 2005    nothing abnorm, HERLEV HOSPITAL
16/06 2006    Pituitary gland tumour in the right side, size 6x6x5 mm, SKEJBY SYGEHUS
17/12 2007    nothing abnorm, FREDERIKSBERG HOSPITAL
13/08 2009    Pituitary gland tumour in the left side, size 4 mm, RIGSHOSPITALET

2005 November - inflammation in the thyroid gland
TSH 0,244↓ mU/l [0,4-4]
T4 123 nmol/l [60-140]
T3 2,2 nmol/l [1,0-2,6]
T3-test 1,31↑ working unit/l [0,80-1,25]
No treatment because the RAI showed normal activity.

The Radiologist at Rigshospitalet said they havn't used "dynamic contrast" in Herlev- and Frederiksberg Hospital, and that’s why they couldn't find the tumour.

In February this year I have add’ed a dopaminagonist so my prolactin level is normal now and that has helped a lot. I still have some “milk” in my breats but not as much as before.

They have now changed the diagnosis to a Prolactinoma and after taking Biperiden (type of medicine who can reduce/dissolve the tumor) it is gone in the right side and I have a new tumor in the left side.

A little bit weird. They have add’ed more tests now.

Anyone seen a similar case?

[rumpled]

Try the meds - once you go for surgery, you will have to take other hormones. It is personal preference - just see what your options are.

[GirlDK]

On medicin.dk I can see we only have these meds:

Antikolinerge (danish):
- Biperiden (I'am on this now, but a very low dose)
- Procyclidin
- Orphenadrin (I have tried this)

Dopamin-agonister (danish):
- Bromocriptin (I have tried this)
- Cabergolin (I have tried this)
- Pergolid
- Pramipexol
- Ropinirol
- Rotigotin

I havn't tried the last four dopamin-agonists. Do you think I shold try them? The hospital have prescribe dopamin-agonists so I can get them from my own doctor tomorrow.

[rumpled]

I thought there was another med available in Europe that was not available in the US - Lisuride. I found this information (alas, I see not available for you either...)

Commercial names
Name Country of Use
Arolac France
Cuvalit Germany
Dipergon Greece
Dopergin(e) Germany, Spain, France, China
Dopergine Belgium
Lysenyl Forte Czech Republic, Slovakia
Prolacam Australia
Revanil UK

It is a Parkinson's medication. It has side effects too - but may be an option if surgery is an issue.

[GirlDK]

I did tell them about it. My stomach hurt so bad I couldn't lay down or sit. I was walking around in my apartment for 8 hours screaming. I have had the same symptoms starting when I was 17. First day whem Iam having my period all the same symptoms. My friends in high school have seen it and they have never seen or heart about it before. After 3 hours I was thinking about calling 911 because of the pain, throughing up and blood in the  faeces. Iam so afraid of Bromo now. I did ask them do hospitalize me and get the meds going, but all the hospitals in Denmark are booked and people are laying in the "hallway" (don't know the word in english) so it wasn't possible. I have tried Dostinex 3 times and same problem again. Bromo and Dostinex is the only 2 meds in Denmark who is documented for treatment. Are you useing other meds in some other countries?

[rumpled]

Bromo is tough - did you work your way up to it? Did you talk to your doc about the stomach distress? Get meds to help? Stopping is not the way - there is also other meds to try.

Yes, they do pathology on the tumor.

[GirlDK]

I tried Bromo for 2 days but I keept throughing up so I stoped the treatment.

If they remove the pituitary tumor do they do a biopsy afterwards?
Iam thinking.. If they have the tumor they can see what it is made of...

[rumpled]

Weird that cortisol is low - but then again, I did very strangely on all the stim tests (flat lined or was low, or normal) and I definitely had Cushing's so I have no idea why the stim tests work for some, and not for other people. But I was cyclical.

I do not think PCOS has anything to do with a prolactinoma or milk in breasts - I mean, that is just simply not a symptom that I ever heard of, ever, being associated with PCOS. Thyroid yes, but PCOS, no. Very strange. I had PCOS and the pit and thyroid and all the other stuff.

I took bromo - I hated the stuff.

As for films - yeah - been there, done that. But in the end, when I had surgery, I had the two tumors there. Hah (to the docs).

[GirlDK]

Update:

07/09 2009: Creatininium 45 (50-90) LOW, Cortisol 123 (140-830) LOW
02/11 2009: Cortisol 0 min 83 LOW, Cortisol 30 min 668 (SYNACTHEN TEST)
16/11 2009: Cortisol 66 LOW (140-830), Prolactin 1070 HIGH (35-600)

They have changed the medicine to Bromocriptin instead of Biperiden. Bromocriptin shold be more efficient. I'am being tested for PCO because of the milk in my breasts and after that I'am going to be transfered to the endo section who deals the pituitary tumors.

I don't know why the Cortisol level is low all the time now. Any idea?

[GirlDK]

You gotta like this.

Now the best hospital in Denmark has gone over all the MRI's.
None of the first 4 MRI's have been done with dynamic contrast, so the "new" tumor could have been there all the time. Furthermore the tumor in 2006 is 8 mm and not 6 mm as Skejby Hosital said. So in 2006 I could have had a 4 mm tumor in the left side and a 8 mm in the right side.

Biperiden was dissolved the 8 mm tumor in the right side, so they said I can be sure that I only have a 4 mm tumor in the left side left now. Diagnosis in Prolactinoma and now they have to test for the other pituitary diseases.

They are so stupid. Why not do the MRI's correctly from the beginning.

Yours and mine case is so similar :)