Pituitary Microadenoma/headache

[rohit_786]

I like to ask question here. I recently diagnose High Prolactin level around 24 (04-18). My doctor had me do MRI which came back with 6mm tumor so they started Bromocriptine 2.5mg /day in the night . I also has low Total Testosterone level which was last month before start bromo was 235(240-827) and Free Testosterone was 59 (50-)
LH was 1.7 (1.4-12.0) , FSH was 3.5 (3.2-9.3).
I have been taking bromocriptine for almost a month but no significant difference , i still have headaches in front head, lethergy ,tiredness . Today test result shows my total testosterone was even lower to 216 , LH and FSH increase little bit 2.2 and 4.4 , i am waiting for other results like prolactin and Free testosterone .
Also found this month my WBC count drop , it was 7.3  and now 5.5 , My Absolute Lympocytes was 2.5 and now 1.9 , neutrophilis was 2.9 and now 2.8 .

Do i need to worry about my WBC , they are still in lab range though but drop a bit in a month which i expect can be change during any time of a day , correct ?.

Does brompcriptine can be responsible for more headache and nausea which i had in the morning today ?

I have neurosurgeon appointment this friday what should i ask him ?

Should i start Testosterone therpy ?, i heard that has side effects like prostate cancer and reduce sperm count , any suggestions?

Any experience and stories people can share about prolactinoma , how long it usually take to descrese prolactin level and increase testosterone level ?

My main complains are muscles pain,tiredness in the middle of day , mood swing and headaches , would that ever resolve ?.

I was also diagnose hypothyroid due to positive Ab TPO three years back , but seems like my TSH and FT4 now is fine  , which is 1.17 TSH (0.6-3.0) and Ft4 is 1.27 (0.6-1.9) .it was long journey but according to doctor it is fine now .
Do you think high prolactin can be the reason for my hypothyroidism as many people have positive Ab but don't have hypothyroidism. ?.

Any help and stories is greatly appreciate it to ease my stress level which is tremendous these days .

[rumpled]

I have not taken either medication. I cannot tell you. I hope someone else can help you.

[rohit_786]

I am waiting for your response, Please respond me . I am thinking about starting HCG and clomid in following order

HCG:
2500IU Mon-Wed-Frid --First week
1500IU same order   2nd week.
1000IU same order   3rd week
1000 IU same order 4th week
500IU same order 5 week.
250IU same order 6 week

Along with HCG , i will be taking 12.5mg of clomid/day. Do you think above dose make me desensitize ?.
I am with 2 Endo at this moment, one suggest only 12.5mg clomid very day for 6 weeks and then do test and other thinks clomid is no use , HCG injection of 2500IU /3 times a week will do jump start my Leydig cells.
My Estrogen is 39 at this moment with total testosterone is 211. Is my testosterone and estrogen ratio looks fine.

[rohit_786]

Today my Endo prescribed me Clomid (12.5mg/day) to increase my testosterone level and increase LH and FSH level. I like to know if anyone has any experience with this or HCG injection is more useful then Clomid..

How soon i would expect to see results  that help life my symptoms some extend.

[rumpled]

Then find another doctor.

[rohit_786]

I just came back from Neuro-surgeon appointment, Again the Stanford lab didn't perform Dynamic MRI as requested by doctor  but at the same time doctor is not convinced that i have any tumor . I wants to repeat prolactin test again in couple of months and then repeat test again one moth a part to make sure prolactin stay high like 25 or above consistent in few months and then they do dynamic MRI to confirm prolactinoma.
I am tired with doctors rather treating my symptoms , they treat my level which is ridiculus, i have low testosterone but my Free testosterone (SHBG) is normal so no issues there , i don't know what to do beside jumping out my 50 floor building. Rather giving me HCG to increase my testosterone level  w/o comprimising my fertility they just not doing anything  and wait for another test.
The reason i am asking same question again again as doctors are not listening they just sending me one doctor to other for nothing.

[rumpled]

You are asking the same questions over and over or questions that have been answered.
Yes, your blood tests indicate something is wrong.
Yes, a cyst can cause issues - anything up there can cause issues.
Yes, a cyst is removable.

[rohit_786]

Thanks for your response, i realize after i posted my number already  but you can see i am so much in anxiety that i really need some sort of support to go along with my symptoms/condition.
Based on my MRI and some blood test  result , it clearly indicate some thing wrong with my pituitary , do you agree on that ?. My LH and FSH are in low side which points out to secondary Hypogonadism and that is because of pituitary based on all the reading i have done so far , do you agree?. My prolactin is also kind of elevated and going up w/o bromo as well .
Is Cyst in pituitary gland can be removeable ?, is Cyst can be responsible for pituitary disorder ?.

[rumpled]

I hope you do well on your appointments.
I know your testosterone is low - but since I am not a doctor, I cannot tell you if it is the pituitary. or if there is an issue elsewhere, as there are redundancies built into the system.
It is not safe to post a phone number openly - those items should be messaged.

[rumpled]

GH is an injection, done daily, at night. Needles are small so once you are over the freak of giving yourself a shot, it is fine. I actually prefer my stomach as it hurts less but they train you on the legs.

GH is very expensive so insurance companies will not prescribe it just on the IGF-1 or GH test results. Some companies refuse flat out to cover it at all. To get it, if it is covered, you have to go for a stimulation test and few places do that now as most of the agents they use to do the stimulation are no longer being produced as they are very expensive and relatively few people take the test. Also, I took the test and then insurance refused to pay for it (it cost a couple thousand dollars) saying it was not medically necessary and it took over a year of nasty letters to get paid - but I had to pay the doctor up front for that reason. Don't you love health care? It may be different for you, but just telling you some issues that have come up. It ***** as GH benefits many but there are so many obstacles put up... and then it does not help that is is abused by some as a diet drug. Ugh.

However, GH is a very sensitve hormone - if you have other things dragging it down, perhaps when they get fixed, your GH will rise again. You need a doctor to you test you completely, a treat you completely. Just like Horselip and me, the docs thought one thing, and it was another - pituitary things take time - they need experts. This is just not a run of the mill issue.

[rohit_786]

Thanks for your response , so that means this cyst is even more dangerous then prolactinima as it damages pretty all hormones. I do have hypothyroid in 2006  but still have symptoms which now turn out to be cyst that cause pituitary disorder.
Do you know what type of GH replacement i would use ?, is this in the form  of injection/tonic/tablet/capsules/gel/cream ?.
I need to have GH and teststerone level to go UP in order to feel well being. I am living shity life  which i need to improve for my family.

[horselip]

Hi
I found our that had a Rathke's Cleft Cyst in late 2004. It caused me to lose function of all of my Pituitary hormones ie:TSH (thyroid), FSH/LH, ACTH
(cortisol), IGF-1. Then I had headaches too. It ends up that it expanded and contracted in size so it would change in appearance on my MRIs. I eventually had surgery  in 2006 and now replace all of the hormones that were off. Now I feel much much better but still have some issue with headaches. They thought that mine was a Prolactinoma at first because my Prolactin levels were slightly elevated. Ends up that the cyst be pressing on the Pituitary stalk making this happen. Good luck with whatever you and your doctors decide to do. Horselip

[rohit_786]

What other testing now required , i pretty much have done endocrine blood test, which one can think off . I need treatment for my low testosterone  w/o comprimising my fertility.
I just found IGP-Binding protein 1 came 2.5
range = random (0-40)
fasting = 10-150

Do you think my growth hormone is also low ?. It seems like the doctors are not heping me just running me for test and then test .

[rumpled]

The bromo will effect the prolactin.
However, once prolactin is normal, the effect on the other hormones are unknown. Prolactin is not a hormone that is... used a lot - it makes your miserable when it is high and is lowered by cortisol from what I know, but I don't know if prolactin itself impacts other hormones like the some of the other hormones (cortisol, thyroid would be biggies).
I could be wrong - but that what I recall from the top of my head.
So I think you still need testing and probably treatment.

[rohit_786]

Yes 28 days of bromo brought down my level from 24 o<0.2  but my question is once your prolactin maintain in stable level then you will start to see other hormones to come normal , like testosterone , LH and FSH or you should see result in other hormone right away once your prolactin in normal.

Thanks

[rumpled]

MRIs will not tell you what is wrong exactly - just that something is there. Only the testing can pinpoint what is wrong.
If surgery is done, then pathology may show what type of tumor it is or that is it a cyst, scar tissue, or hyperplasia, or what ever...
I took bromo only a short time and it took my levels down - I think it varies by the person.

The combo of your MRI and the blood tests yes, should convince a reasonable doctor that you have an issue - so you need to find one to help you.

[rohit_786]

If there is something wrong in my pituitary gland which probably effect my prolactin hormone , do you know how long one should be taking bromo or dostinex to start reverse the symptoms and have testosterone level to go up ?. In PNA forum the guy said 28 days of bromocriptine is not enough to see result , you may start see result after 6 months of treatment , is this true ?. Although 28 days of bromo dropped down my prolactin below <1.

Based on my blood result and some thing is there in MRI , certainly proof something going on with my pituitary so surely secondary hypogonadism , correct ?.

[rumpled]

Er, your MRI is suspicious. It should not be taken as normal. I hope your doc does not take it as normal.
A high signal means something is there. They just cannot tell.

Since I was just at this conference and a surgeon was talking to us, he was telling us that he looks at the films to see hypo-intensity (darker spots) and they like dynamic as they are looking for the differences in how the gland and the tumor absorb the dye - that is how he looks for a tumor often in films where a radiologist has said it was normal.

But your radiologist was at least decent enough to find the spot.

Of course you need a good endo - and the good endo should be associated with good surgeon(s).

[rohit_786]

I found you are the knowledgeable person in this side so i just post you the wording in MRI report which i just receive.
"PROMINENT HIGH SIGNAL WITHIN THE POSTERIOR ASPECT OF THE PITUITARY GLAND.WHICH LIKELY REPRESENTS THE POSTERIOR LOBE OF THE PITUITARY GLAND.NO DEFINITE LEISON IS IDENTIFIED. HOWEVER IT IS CONCEIVABLE THAT THIS POSSIBLY COULD REPRESENTS A SMAL PITUITARY LEISON.SUCH ASA HEMORRHAGIC MICROADENOMA OR HEMORRHAGIC/PROTEINACEOUS RATHKE CLEFT CYST.
RECOMMEND FURTHER EVALUATION WITH SPECIALIZED 3-D T2 CUBE IMAGING."

Is above word tell anything about tumor ?. I think at this stage i need good neuro-endo or just good endo  rather neuro-surgeon . what do you think.
What should be my plan of action to get my normal enjoyable life back ?. i need to do something for my low teststerone, should i ask my doctor to give me HCG ? which will have testes to make testosterone w/o compromising my fertility ?.
Please give me advise so i can work with doctor and get this straight.

[rumpled]

As I have said before, up to 40% of the little monsters hide. EIther the radiologist missed it, or that the MRI slices which are about 3mm happened to be such that the dang thing fell between the slices. It does happen.

Your doctor *should* know that and realize that if you had a tumor, and still have an elevated level, that you should still be treated. The tumor size can go up and down since you were on bromo too and be smaller.

The doc is not going to stop all treatment due to the MRI now is she? If so, find another doctor.  She wants to make sure? Huh? I think I would go find another doctor.

[rohit_786]

I need your advise. My doctor asked me to Dynamic enhanced MRI which came back normal and shows no sign of tumor at all , i am kind of lost here on if there is no tumor and according to radiologist gland itself look in normal size and shape , what is next now . Why my testosterone is low , why my prolactin is slightly elevated , why do i have sympotoms . Is it possible pituitary has some disorder w/o having tumor ?, is it now all idiopathic ?. What will i do , please suggest.

[rohit_786]

Thanks for your reply. I have stopped taking Bromo for last 10 days but since yestarday i started having headaches again which was kind of stop after 3 days of not taking Bromo. Do you think it could be possible in just 10 days my prolactin went up?.

[rohit_786]

Thanks again for your response. I just got my other test results

Free testosterone 74 (52-190)

My doctor stopped my bromocriptine as my prolactin went down to 0.2 , she wants to make sure i have prolactinoma which means if prolactin go up w/o bromo that means i have prolactinoma . Do agree with her diagnoses ?.
Do you think what it came in MRI Microadenoma is just a fluke ?

[rumpled]

My prolactin went down with the drugs - I still had a prolactinoma. The point of the medications is to reduce the prolactin with a pituitary tumor. What your doctor is saying is not making a lot of sense.

You can also have multiple endocrine issues. Yes, the weight gain can be low testosterone but  if it is only around your belly then that is suspicious. Do you have any stretch marks? Are they red or purple?

You certainly have endocrine disorders going on - but you need to find the source. Then is can be treated appropriately. I had thyroid, androgen, pituitary, adrenal... I was treated piecemeal. It did not work. It was not until the main piece was treated that the rest are stable.

[rohit_786]

My doctor did test my coritsol level last time and that came back pretty normal i guess 24 not remember the reference range.

DHEA sulfate not remember if tested , i would ask my endo tomorrow .
My concern is even now my prolactin went down after bromocriptine does that means there is no pituitary disorder issue  or can be disorder it is just that it went down due to drug , what do you think ?

I do gain lot of fat around belly which may be the reason for low testosterone also , correct ?

I understand you are not doctor but certainly very knowledgeable and surely give value for your opinion and experience in this field.

Thanks again for being around for us.