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 .
Are you seeing an endocrinologist? or just a neurosurgeon?
Your main complains should resolve when most if not all of your hormones are balanced. That means all.
IMHO, your thyroid problem is separate as evidenced by the antibody test. I would not feel well with your test levels - and would like more tests such as Free T3 and Free T4. When you have a pituitary tumor, TSH is not exactly what you want to use since well, TSH is a pituitary test and you know your pituitary is not healthy. You need other tests. Of course, your doc is still thinking TSHGOLDSTANDARD... *sigh*. But a neuro-endo will use it just to see how off it is.
You will need to be on bromo - or dostinex - for the rest of your life, unless you have surgery. Bromo does give headaches. Read up on the side effects. I took mine at night to sleep through a lot of them.
Some endos may want to see how the prolactin goes down before they start testosterone, others may want to start it - it all depends on your history and other issues. The side effects you mention... well, I do believe that is for those with normal levels taking it, not for those with low levels doing replacements. Usually replacements for hormones, if they are bioidentical, have few side effects, when they are needed. If they are abused, that is something else.
I don't know about the WBC though. I would ask your doctor. Since it is in range, odds are you will not get much of a response. Please let us know what he says.
My doctor did test FT3 which was 3.3 (2.6-4.2) and my FT4 is 1.27 (.6-1.8), the free t4 went down though it was 1.37 6 weeks back.
Do you think those muscles aches and fatigue are the low testosterone symptoms ?. or can be attributed because of thyroid ? which because of doctor should not as levels are in good range .
I will be seeing Neurosurgeon tomorrow for second opinion about pituitary tumor issue and will be meeting with Endo on Monday.
I also think about WBC , they will say it is not to worry thing as all the numbers are in way above normal any ways , i was thinking about Bromo can be reason to bring wbc down as it was 7.3 last month test before i start Bromo.
If i do testosterone therapy , would that be any effect on prostate enlargement or can decrease sperm count as a side effect ? , which means i can't go for baby ?. Any gel/patch you can advise if they wanted to use therapy ?.
I do have constant headaches/dizziness for last few days more and i am also taking Bromo with night meal so i can sleep over most of the side effects but not sure that is helping.
Is surgery really bad for pituitary ?. I don't want to take another drug lifetime.
Another thing i want to add regarding culd be some side effects of Bromo or could be something else.
since for last 2 days i am having burning eyes/headaches which are kind of constant , is this common as well ?.
My low testosterone can be the reason of my muscles /finger joint pain/muscles weakness and weight gain may be ?., sorry if i am asking same question over again but just that i am so much worried and stress out that i can do anything . Is this could be an infection which can cause of high prolactin level or could be Hypothyroidism even though i have positive Ab.
I need some help rumpled if you can help me with some moral support may be that can help me not stress out .
thanks again for being here in this forum
I feel better if my T3/T4s are on the higher side. I finally found a doc who added a bit of T3 and that helped me feel a lot better.
Low testosterone causes fatigue, low libido, bone issues, loss of lean muscle, and increased fat on the body. Like me, you have multiple issues so it is hard to tell which issue is causing what, and thyroid and prolactin can cause similar issues. I also get a lot of muscle pain and weight gain (thyroid plays a role too). Funny though, a lot of doctors will say that hormones are not a factor (even though these are known factors) and advise people to diet... which usually have limited or no effect. I don't know if you can separate symptoms.
From what I know, Hashimoto's is auto-immune. The source of the prolactinoma is unknown. It is not an infection.
When my prolactin was high, I was a mental mess and very unpleasant to be around - and now know that emotional changes are pretty typical but many of the endos seem to think that instead of being a symptom, that the mental symptoms are something to be treated separately since they have a pill for it. Many of my friends are diagnosed bi-polar or depressed before a pituitary problem.
Usually if a person takes replacement testosterone, he may have a low count and it should increase to normal. The whole point of replacements is to get the person back to normal. If someone who is normal takes too much, then you have the symptoms of too much - which can lead to being aggressive. You need to talk to your doctor about risks to the prostate and if the risks outweigh the benefits but the risk seems small.
Bromo has side effects. If it seems like you cannot tolerate it, see if your doctor will try you out on dostinex. But it takes a while before side effects diminish - the body has to get used to it.
Surgery is... not bad but there can be risks. And with surgery, you can risk taking other medications as often growth hormone is lost which means taking injections daily.
Thanks but I am just trying to help out like others have helped me.
I just came back from Neurosurgeon , he is still un sure that will be prolactinoma as my prolactin level was 24 last month which slightly elevated that can be because of stress, he is more concern about Testosterone level which was in my age 37 is consider low not horribly low (235 (240-867). He thinks muscles pain/joint pain and muscles weakness can be related to testosterone level , he wants to repeat test again and if level don't go down or still above range eve a one point then consider to be prolactinoma which can be treated with drug, he switch me to dostinex which has less side effects as per him , he wants me to take dostinex 0.5 mg twice a week.
What could be other reason of low testosterone level any idea ?.
He is more leaning towards surgery as compare to drug in my age and mention the surgery now is not really have any scare they will go through my sinus vein and remove tumor, but need to do multiple prolactin test to determine it.
Can you think of some other reason of low testosterone level, can stress be the reason ?.
I can think of reasons for your low testosterone - it is called your hormones are being wacked up from the pituitary tumor, the endocrine system is a system - and being so, the whole system has to be working or if one is off, there is a domino effect.
The stress thing is bunk IMHO - were you stressed when you took the test (afraid of needles?) or on the day of the test, were you told of a death in the family or that you were going to be divorced right before the draw?
Is he testing any other hormones? CPK? There are so many things that can be causing pain - what are the other tests saying?
Surgery does not go through the vein, but through the nostril. Make sure you use the most experienced surgeon you can find. That may not be the surgeon you are seeing. Ask if he has done more than 500 surgeries already, 50 in a year typically as well as how many of your type. The type is important as the tumors vary. The reason is your optic nerve and your carotid arteries are right there and so there are risks of blindness and stroke with an inexperienced surgeon. Get a good one and that worry diminishes. It also pays in that less damage is done to the gland and odds are you will not become hypopit later. I cannot stress this enough.
Well if it is surgery i am not stress , he does this kind of surgery 3 or 4 every week so probably 100 in a year but again concern remain there that i really need surgery as just recent test result came back and that shows
my prolactin level dropped down to 0.2 (3-18) which according to discussion with him if my prolactin dropped down significantly then not consider even prolactinoma and something else to look for low testosterone level.
I am really getting stress out , i surely have very week erection and also not pro longed as well not that i getting to know these things i am going back in my life and trying to remember when this whole thing started with low testosterone level , i believe for so many years i have weak erection and also less morning erection and for last 2 years hardly have any , i do sex with my wife i believe just once/week and some time once /month so surely problem is there , i have been blaming thyroid for this as i have struggling with my thyroid number for quite some time atleast couple fo years but not that my thyroid level is normal , why i still have low testosterone level.
My LH does increase in this test to 4.4 (1.4-9.3) and total testosterone is 216 (241-827) which is really low in my age.
I don't know the stress is all the reason as i am surely stress out with my health issues and getting stress out every day with low energy /muscles pain/joint pain/low sex performance and libido.
Please rumpled help me , based on your experience with my whole condition what do you think is all happening , i have endo appointment on Monday , do you think testosterone therapy need to be started if i do it will shut down my own testes to make testosterone which in turn stop or reduce sperm count so no more kid in future , correct ?.
Or should i go for exercise route as i increase lot of weight specially in my stomach side which is one of the symptoms .
Please help me suggest what to do i am stressing too much , if it is prolactinoma and my level either same or decrease little bit, i would be happy atleast something discover which will fix but now it seems like back to square one and look for other reasons , what do you think ?.
Or even prolactin went down it is still pituitary issue and take some time for testosterone level to go up after prolactin level went down in my test ?.
Please again help me.I have been checking medhelp to see your response atleast 20 times in a day :-).
You are the best.
Whoa there... I am not a doctor. I am just a regular person who had a lot of endocrine disorders, has done my own research. The terms of this board are that it does not dispense medical advice. I am telling you what I think - but I can by no means know for sure as I only have 10% of the data. I am trying to make good guesses and guide you to help your doctors make good decisions with you.
Testosterone comes from two sources - the pituitary will stimulate the testes via LH/FSH as well there is a precurser androgen that comes from the adrenal gland called DHEA. The proper test for this is DHEA sulfate. The DHEA can convert into estrogen or testosterone depending on what is needed or sometimes it gets messed up. When you have low or high testosterone, the female hormones as well DHEA sulfate need to be tested to see if you are converting and what you are doing. Even though I am female, I tend to make more testosterone - you cannot pick what your body does when your hormones go wacky.
An increase in central obesity - where weight is gained around the belly only - is also indicative of adrenal issues. So I hope your doctor checks out your cortisol. High cortisol often makes for low testosterone, low libido, etc.
You need a thorough hormone check - not just a few things, but pretty much all of them.
When I said stress, I meant "stress the point" about how important it is to have the best surgeon possible. Hang in there... it is hard with your hormones going all over to feel good though... I feel for you - been there, done that.
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.
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.
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 ?
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?.
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.
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.
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.
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).
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 ?.
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.
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.
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.
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 .
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
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.
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.
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.
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 ?.
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.
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.
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.
I am waiting for your response, Please respond me . I am thinking about starting HCG and clomid in following order
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.
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