Pituitary Disorders :: Prolactin Levels But No Tumor?
Jan 18, 2016
I'm a 30 year old active female with a history of prolactin/pituitary problems.
- When I was 17 I was diagnosed with a pituitary macro adenoma. I responded well to cabergoline so no surgery was carried out to shrink the tumour.
- When I was 19 my MRI showed a small bleed to the tumour which caused it to shrink completely.
- when I was 21 I was taken off cabergoline and my prolactin levels remained normal for a few years.
- when I was 25 I noticed familiar symptoms, breast discharge and fatigue so went back to my consultant. My prolactin levels creeped back into the abnormal range and I was put back on cabergoline. MRI showed no tumour.
- 3 months back into treatment I found that cabergoline was making me incredibly tired and low so my consultant switched me to Quinagolide (norprolac) which worked and gave me no nasty side effects.
- I'm now 30years old and last year my consultant and I thought it was time to stop medication as my prolactin levels remained in the normal 300 mark. 2 weeks after coming off my medication I noticed my moods changed significantly and my sex drive vanished. I went back for immediate blood tests and my prolactin levels had raised up to 700! I went back on Quinagolide to reduce the levels and once again felt OK.
- I recently had another MRI to see if there had been any changes. My MRI was once again clear.
I'm incredibly frustrated and gutted to still be taking medication for something that I simply don't understand. Why are my prolactin levels continuing to rise yet I no longer have a pituitary tumour!? I go back to see my consultant in a couple of weeks but I fear that nothing will change and I will continue to treat a problem rather than get to the bottom of the cause.
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I found out about 6 months ago that I have high prolactin levels. They have put me on 2 different medications to reduce the levels. The first one made me sick so they lowered the dose. I am still experiencing abdominal cramps when I take them and my doctor doesn't seem to be concerned about it.
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I am a 27 year old male. For some time I've shown symptoms of a lack of sex drive and erectile dysfunction but as I suffer from anxiety always attributed it as the cause. I had some blood tests done privately and my results showed a slightly raised prolactin level but my testosterone seems average.
TSH 0.70 mIU/L (0.27 - 4.2)
Prolactin 397 mIU/L (86 - 324)
Testosterone 21.3 nmol/L (7.6 - 31.4)
SHBG 35 nmol/L (16 - 55)
The results seem to suggest Prolactinoma but a common side effect is low testosterone where my results prove otherwise. I'm afraid if I speak to my doctor he will tell me it is all in my head so I'm trying to make some sense of the results.
I guess the question I'm asking is is it possible to have raised Prolactin/Prolactinoma and normal looking testosterone levels?
Should I speak to my doctor anyway?
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It was discovered i had an 8mm microadenoma. It raised my prolactin to 175 and lowered testosterone to 70. cabergoline lowered prolactin to normal levels. I had testosterone therapy raising my levels to normal but they went much lower again after the therapy. prolactin remains low. cortisol and insulin growth like factor 1 remain slightly elevated. Can any help as to why my testosterone remains low. I am 45 and active. slightly overweight by about 25 lbs but have always been even before the adenoma and prolactin issues.
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This is all very new to me so I hope I'm doing this right but I'm just looking for some reassurance. I'm 26 years old and was diagnosed with a parapharyngeal space tumour in late 2012. 2013 my surgeon attempted to remove the tumor by cutting my jaw and going through the back of my throat into the pps, unfortunately he was unsuccessful and didn't remove any of the tumor. We decided to monitor it over two years and see if a change in growth was noted. I should mention that for the last 4 years I've had pain in my left ear and face which has been gradually worsening, and around 10 months ago I lost hearing in the same ear which is now joined by a high pitched ringing. A mri in early December 2015 showed a growth in tumor so my surgeon decided to remove it, however he would need to take a wider approach to ensure he would get the tumor this time, he is concerned that it's involved with my lower cranial nerves so we may need to remove or damage them which would greatly alter my quality of life. Currently I'm looking at other options or other ENT over the world for more opinions.im desperate to find someone else who has been through something similar or if anyone has a suggestion of surgeon or alternative treatments. They are unsure the nature of my tumor so time is of the essence for me. Any help would be greatly appreciated. I have a 1 year old baby who I need to be around for to watch grow up.
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What would cause elevated Testosterone(1028.53 ng/dL) and elevated Prolactin(26.13 ng/mL)levels at the same time? I have normal Total and Free PSA levels. My Thyroid function tests (TSH,Free T4 and Total T4) are normal. Vitamin D is normal, CEA is normal. I am a healthy 56 years old. I take no medications, drugs or alcohol. Do you have any idea what would cause this?
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I had a pituitary tumor removed several years ago. I had a follow up MRI last month and an appointment with my neurosurgeon. All is well. I did inform the Doctor I have been tired lately so he ordered blood work to check hormone levels. Turns out my testosterone level is low. Actually looked at my bloodwork records just prior to tumor removal and all hormone levels were WAY OFF - They have all seemed to come back to normal levels with the exception of my testosterone. My surgeon is referring me to a endocrinologist. Working on making an appointment now. Has anyone else experienced a low testosterone level after this tumor removal and if so what course of action did you have to take? I am 46 now and I understand testosterone levels do begin to drop a bit in males once reaching the age of 40.
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Why are my T4 levels and Cortisol levels low?
I have been having symptoms of depression, fatigue, low libido and weight gain over the last few years. I am 50 and have gone through menopause. My latest lab results are:
TSH 1.064 (0.358-3.74)
Free T4 9.7 (9.8-18.8)
ferritin 16 (3-105)
B12 498 (156-672)
Cortisol 28 (155-570)
RBC's normal
I am not taking any thyroid meds......only nexium and Cymbalta.
What do these results mean? Can someone give me some insight into the results please?
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My LH is 5.6 and my FSH is 3.7. One Dr says this is good and shows I'm not going through menopause. Another Dr said they are low for my age (I'm 37). My testosterone was also low. My prolactin is 412. One Dr says its within normal range, another says its slightly high lol So here I am, wondering if anyone else has had similar levels & if so what they mean?
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How long does it take to get full pituitary function recovery after surgery to remove a non-functioning pituitary adenoma that was approximately 3cm in size.
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What's your take -patient has normal T3 and T4 levels, no symptoms and a TSH elevated at 4.8 on a .358-3.8 range
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I have very recently been diagnosed with hypothyroidism. I've taken the thyroid uptake scan and my dr. Office says it came back abnormal and enlarged thyroid.
According to my blood work my TSH is 0.227. (0.450-4.500)T4/free is 1.80 (0.82-1.77)
My question is should medication begin with these levels?
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I found out I had a B12 deficiency 5 years ago. My levels were very dangerously low at the cellular/functional level. I was told I was near paralysis. Now, after 5 years, they are still low. They have come up to almost borderline, but it still flags red on my tests. My serum levels though are too high for the lab to measure! Its just not getting into my cells so it's not able to be used. I do twice a week injections plus twice a month IV B12 and still it has taken my body 5 years just to go up a little bit. I feel the effects of the shot for about 15 hours barely then I just feel awful again, thankfully it's prescribed every 2 days. But I don't want to do it every 2 days forever!
In the beginning I was told it would take a month or two to get my body back to normal and then just a shot every few months for maintenance. My drs have not only increased my dose but also the frequency and STILL after all these years I'm deficient.
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In 2013 I was diagnosed with N.E.T. malignant of the ilium where small intestine meet large intestine. They found it during a colonoscopy, when they did the surgery to remove they found one more tumor in the appendix. The tumor in the intestine was 3 cm and the one the the appendix was 1 cm. The one in the intestine went through the wall so they took lymph nodes 12 found only 11 - 1+ , so they said they needed to keep an eye on me for 2 years. These are they results of my chromogranin test which don't make sense to me???
Close to surgery date when I had 2 positive tumors
Chromogranin A
9/13 53. <93
2/14. 97. <93
4/14. 76. <93
7/14. 60. <93
7/15. 92. <93
With the 7/15 test they found 3 enlarged lymph nodes around the surgery area during the C.A.T. scan but very slightly enlarged like 2 mm enlarged each not enough for him to worry. But he's going to retest in January, he said it might be just an infection around the surgical site. But he did a full blood work up and my count wasn't up.
During the 2 years since the surgery I have had extreme pain in the surgical site and in another site in there they've done all external testing they can but when I suggested a colonoscopy to view the surgical site they said my Oncologist said one was not needed to view tumors.
I asked my primary care doctor to speak to the gastrointestinal doctor and they refused to do the test. So I went outside the hospital that did my surgery they refused to do the test saying go back to the place you had your previous test done. So how do I know if this is from the surgical site or the lymph nodes since when I actually had to malignant tumor's my levels were within normal range?
If you need to know more please ask . At this point I'm having a very hard time trusting my physician care.
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I have a small hard lump behind my ear and I'm terrified it's something awful like a brain tumor... Does anyone else have this or know what it could be?
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A few weeks ago while cleaning myself in the shower I discovered hard lump inside my anus. I suppose that it is on my sphincter because it is not very far into the anus. I was able to look at it upon closer inspection with a mirror and what I see is something about the size of a grain of sand and it is light in color. Is this a polyp? A tumor? I'm so scared of this because my mom recently died of colon cancer at age 57. I don't really have any other symptoms, although a few weeks ago I did see bright blood on wiping (but I think that was probably caused from chafing since I shaved back there the day before). There MAY be another similar lump a little farther up, but I'm unable to see it in a mirror.
Also, I have had unprotected anal sex in the past (with the same partner) but the last time I did that was April 2013. The person I did it with was tested for std's beforehand.
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Very healthy adult male, with these numbers:
LH: <0.2 (undetectable)
FSH: <0.2 (undetectable)
Vitamins D, 25-hydroxy: 27.4
T: 154
All of these are abnormally low. I feel fine, but I suffer from ED, low libido
Doctors 'note' on the bottom of the test results were:
Needs to see endocrinology specialist AASAP!
Ok, nobody likes to see ASAP! Written by a Physician... How worried should I be?
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I might have had 2 or 3 mild headaches in my life.
6 months ago i had most of my pituitary gland removed due to Cushing's Disease.
3 months ago i had a visual field test that showed possible swelling around the optic nerve.
6 weeks ago i started waking with headaches at about 4.30am ! i would sleep more then wake later with less of a headache but when i stood up i would get a whooshing sound in my ears and a throbbing in the top of my head. i told me GP. She said its normal when you first stand up ( Normal My #$$, if it was normal wouldnt it have been happening all my life, anyway i digress lol ). So i had these headaches, i got blurred vision and my blood pressure went up to 234/127. So off i go to hospital for 4 days.They played around with my blood pressure meds and sent me home. I still had headaches, blurred vision and my BP was 180/105( now on 4 different BP meds ).
2 weeks ago i went and had a repeat of my visual field test. The Opthmalogist wasnt too happy, basically told me one quadrant of my vision in my left eye was gone. Said he would speak to my Endocrinologist !
2 days later i noticed what i can only describe as a smudge in my vision...very annoying, but not painful and yes i can still see. but im not driving, im too scared to. I drove one day and as it got darker i couldnt tell where the other cars on the road were, kind of a distortion thing i guess
My Endocrinologist rang the next day and said i need to go for an urgent MRI...so i did.
That was 1 week ago. i have had no results, no phone calls. But i did get a letter advising me i have a Neurology outpatient appointment on 13th october ! i rang to confirm as i was waiting for an endocrine appointment. Hospital said, yes, the neurosurgeon refered you to neurolgy following your MRI. Hmmm thanks for that.
So now im trying to guess whats going on. Did my MRI show up something, if so what?, if not then why am i being referred to neurology?
I hate being in the dark. Yes i know i only have 2 weeks til i find out, but 2 weeks is hell when your second guessing.
Summary : i still have headaches ( they are for the most part mild, throbbing when i stand followed by whooshing in ears), vision has maybe slightly improved in last 2 days but still not normal. Blood pressure is still sitting around 180/105
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My mother has been recently discovered a small growth on her pituitary gland. Her problems started three months ago with her irregular monthly periods and strange lactation. The tests she did showed significant increase of hormones. Then her doctor arranged CT scan and tumor was discovered. She started to have problems with her vision recently. Could problems with pituitary gland be causing vision problems?
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My MRI report had two findings. I am worried about the second one more than the first, and I'll explain why.
"Slightly prominent (upper range of normal) pituitary gland" is the first and impression was the radiologist recommended a second detailed 3D scan.
Secondly, there was a non-specific finding of an "8mm nodule medial to the internal carotid just outside the skull base, mildly hyperintense" - impression was it was not fully imaged and more detailed scan needed.
That second one worries me.
Could this be cancer? Tumor?
For the first, my family doctor ordered a blood test and my hormone levels were normal so she said its probably just a slightly oversized pituitary.
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Hi, I’m hoping some people can hopefully give me some advice please regarding treatment. My history: I’m 30, diagnosed with secondary adrenal insufficiency via an insulin tolerance test. I have borderline low hypothyroidism, low prolactin. No cysts. I am 40kg, 5ft tall so I am very petite.
I currently take hydrocortisone after each meal 8am-4 mg, 12m-4mg, 3.30pm-4mg, 8pm- 3 mg. I have to take my medication following food to reduce the intensity of the spike. I also cannot tolerate more than 5mg at one time without getting awful side effects of anxiety and panic when the tablet peaks in my blood at 30 minutes. Each doe I take only lasts around 2.5-3 hours.If I am to take 10mg at once I feel ‘high’ and ‘rushy’ and anxious when it kicks in then after 3 hours its starts to drop and I feel low cortisol again.
I feel like I am swinging all day every day. I am still so fatigued, have very bad dizziness and brain fog, light sensitivity, blurred vision, weakness, leg and arm cramps, reactive hypoglycemia and achy.
4 weeks ago I ended up having an adrenal crises, yes it was horrendous and scary but I got through it and in a way it was a blessing because it has been a BIG wake up call that I need to stop being scared of trying new medication in fear of getting sicker and realised I have got to try and get myself well.
I have been so unwell since I was 21 I am now 30. ….i have lost so much of my life and I am sacred I am never going to get better or managed.
My consultant prescribes medrol a while ago and I have been too scared to start to but after my crises I started it. I am now taking 1mg Medrol in the morning and then 3 more doses of hydrocortisone at 4mg, 4mg and 2.5mg…
When I first started the Medrol I could feel it working but now its like I can not feel it and by 4 hours later I am feeling hypoglycaemic, weak nauseas etc… I am feeling so unwell after I eat a meal, like all my bodies energy is wiped out from digesting my food and im now lying in bed weak, giddy and lots of pain cramps in my arms and legs…
I have low blood pressure and my consultants suggested
fludrocortisone. I just don’t know what to do anymore. My consultants saying I shouldn’t feel so unwell and im just so lost.
Has anyone been on Medrol and can give advice on this. Im very petite, 5ft and 40 kg…I just feel so up and down and struggling with it all and also feel my symptoms get worse or better during certain times of the month..
i also cannot tolerate many carbohydrates because my blood glucose pikes very high at 1 1/2 hours post eating and drops every low by 21/2-3 hours.
I’ve now had to set up a backup carer to help when am unwell because i am on my own with 2 young children. I am getting help with them now and also trying to get support for taking them to school…im slowly getting there
I have also done a month of blood tests looking at progesterone and estrogen and have found a pattern in some of my symptoms.. I most definitely feel my worst when I am coming off my period, stopping bleeding where I start to feel cold and foggy and nauseous I then when ovulating feel at my worst and the 2 days when my estrogen was highest I had severe anxiety, tremor, agoraphobia, intense drowsiness after eating and these symptoms always disappear once I ovulate and start seeing progesterone mucous . Apart from these symptoms which come on with my cycle I suffer with all my other symptoms throughout the whole month with increase and decrease throughout my cycle.
I have included a lot of tests below and anyone who feels they can help would be so much appreciated. Thank you for your time
These are my most recent blood test
June 20th 2014
Autoimmune profile – normal no action
Mitochondrial antibody level – negative
Anti-smooth muscle autoantibodies – negative
Panetta cell autoantibodies – negative
Reticulum antibody titre – negative
Anti-liver kidney micro ab lev – negative
Serum vitamin D – 71 nmol/l
Erythrocyte sedimentation rate – 9 mm/h (0-15)
Total white cell count - 6.5 10*9/L (3.5-10.0010*9/L)
Red blood cell count - 4.14 10*12/L (3.8-5.0010*12/L)
Haemoglobin estimation - 119g/L (115.00-145.00g/L)
Haematocrit - 0.360L/L (0.36-0.46L/L)
Mean Corpuscular volume (MCV) - 87Fl (84-98)
Mean Corusc. Haemoglobin (MCH) - 28.7pg (27.5-32)
Mean Corpusc. HB conc (MCHC) - 331g/L (300-360)
Red cell distribution width - 15.1% (<14.50%)
Platelet count - 194 10.9/L (150-400 0010*9/L)
Neutrophil count 3.3 - 10.9/L (1-3.5010*9/L)
Lymphocyte count - 2.0 10*9/l (1-3.5010*9/L)
Monocyte count 0.8 - 10.9/L (0.31.0010*9/L)
Eosinophil count - 0.3 10*9/L (<0.401089/L)
Basophil count - 0.1 10*9/L (<0.1010*9/L)
Serum folate - 4ug/L (3-20)
Serum ferritin - 8ug/L (10-200)
Vitamin B12 - 632 ng/L (200-910)
TSH - 3.04 mu/L (0.35-5)
Free T4 - 11pmol/L (9-22)
Liver function tests
Total bilirubin level - 7umol/L (1-21)
ALT - 9 U/L (1-50)
Blood calcium level 2.16 mmol//L
Corrected serum calcium level – 2.14 mmol/L (2.20-2.60)
Serum inorganic phosphate - 1.44mmol/L (0.8-1.50)
Serum alkaline phosphatase – 54 U/L (30-130)
Serum total protein 69 g/L (60-80)
Serum albumin - 40 g/L (35-50)
Serum globulin - 29 g/L(22-40)
Serum sodium - 136 mmol/L (133-146)
Serum potassium - 4mmol (3.5-5.3)
Serum urea level - 3.8 (2.50-7.8)
Serum creatinine - 49 umol/L (20-103)
Plasma C reactive protein - 0.3mg/L (<5.00mg/l)
I paid for a whole series of blood tests. They was taken on day 4 of my period, I had fasted for 12 hours. I was salt fasted for 24 hours and remained sitting up prior to the test and during the test so the aldosterone and renin tests were accurate. The bloods were taken at 9am. I take hydrocortisone 15mg a day and took my last dose of 2.5mg at 8pm the night before the test. I was taking no supplimenst or anything else around the time of the test.
HORMONE PROFILE
Aldosterone 399.0 pmol/L Upright 100 - 800 pmol/L Supine 100 - 8450pmol/L
RENIN 66.2 mU/L Upright 5.4 - 60 mU/L Supine 5.4 - 30 mU/L
Aldosterone: Renin ratio 6 <80 Conn's Unlikely
FSH 6.1 U/L
LH 11.9
Oestradiol 106 pmol/L
Prolactin 144 mU/L 102 - 496
Cortisol (basal) 449 nmol/L (171 - 536) (BASAL 171-536, EVENING 64 - 327)
Free T3 4.8 pmol/L (3.1 - 6.8)
Thyroid stimulating hormone 2.310 mU/L (0.270 -4.200)
Free T4 14.0 pmol/L (12 - 22)
FULL BLOOD COUNT
WBC 4.90 x10^9/L (4.0 - 11.0)
RBC 4.43 x10^12/L (3.80 -5.80)
Haemoglobin 135 g/L (120 - 150) R
HCT 0.41 ratio (0.36 -0.46)
MCV 93.0 fL (80.0 -100.0)
MCH 30.4 pg (27.0 -32.0)
MCHC 326 g/L (315 - 345)
Platelets 241 x10^9/L (140 - 440)
RDW 11.8 (0.0 - 14.0) **
MPV 9.3 fL
Neutrophils(Abs) 2.58 10^9/L (2.0 - 7.5)
Lymphocytes (Abs) 1.69 10^9/L (1.5 - 4.0)
Monocytes (Abs) 0.44 10^9/L (0.2 - 0.8)
Eosinophils (Abs) 0.22 10^9/L (0.0 - 0.4)
Basophils (Abs) 0.02 10^9/L (0 - 0.1)
CRP< 0.3 mg/L (0 - 5)
BIOCHEMISTRY
Sodium 139 mmol/L (133 - 146)
Potassium 4.2 mmol/L (3.5 - 5.3)
Urea 4.9 mmol/L (2.8 - 7.8)
Creatinine 56 umol/L (45 - 84)
estimated GFR (eGFR) >90 ml/min
LIVER FUNCTION TEST
Total bilirubin 5 umol/L (0 - 21)
Alkaline phosphatase (ALP) 65 Iu/L (30 - 130)
ALT 11 Iu/L (0 - 33)
GGT 8 Iu/L (UP TO 40)
Total Protein 78 g/L (60 - 80)
Albumin 49 g/L (35 - 50)
Globulin 29 g/L (18 - 35)
AST 16 Iu/L (UP TO 32)
Lactate dehydrogenase 171 Iu/L (135 - 214)
Serum Calcium 2.39 mmol/L (2.2 - 2.6)
Albumin 49 g/L (35 - 50)
Adjusted Calcium 2.30 mmol/L (2.20 -2.60)
Uric Acid 278 umol/L (140 - 360)
Glucose 3.8 mmol/L (4.2 - 6.1) **
LIPID PROFILE
Cholesterol 3.94 mmol/L (0.0 - 5.2)
Triglycerides 0.54 mmol/L (2.26) *
HDL cholesterol 1.41 mmol/L (> 1.68)
Cholesterol/HDL ratio 2.8 ( <5)
Low density lipoprotein 2.28 mmol/L (2.5 - 4.5) **
% HDL/Total Cholesterol 35.79 %
B12 687 ng/L (191 - 663) **
Folate (serum) 5.4 ug/L (4.6 - 18.7)
IRON AND UIBC
UIBC 60.0 umol/L
Iron 17.0 umol/L (6.6 - 30.4)
Total iron binding Capacity 77.0 umol/L (41-77)
Transferrin saturation 22.1 % (20-55)
Ferritin 13.1 ug/L (13 - 400)
Ferritin 13.1 ug/L (13 - 400)
Vitamin D 24.5 nmol/L Reported
<25 nmol/L: Severe Vitamin D deficiency
25-75 nmol/L:Borderline ranging to insufficiency
75-200 nmol/L: Optimally replete
>250 nmol/L:Possible toxicity, if sustained
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