I think it's time to change your Doctor @Hooked. She seems to think that your welfare is not really her responsibility and her empathy seems in short supply. Nothing like putting the fear of God in you.
There are many causes of higher prolactin levels and the tumours she is referring to are usually benign ones in the pituitary gland.
http://www.pituitary.org.uk/information/what-is-the-pituitary-gland/
This explains the test for Prolactin and it may be that you have higher levels, some people do and it is inherited
http://www.labtestsonline.org.uk/understanding/analytes/prolactin/
I hope others will be along to give you some encouragement.
(((((hugs)))))
I think people are willing to accept that diabetes is the cause of some medical matters but there has to be an explanation as to why. Some Doctors forget that not everything is diabetes related.
There are many causes of higher prolactin levels and the tumours she is referring to are usually benign ones in the pituitary gland.
http://www.pituitary.org.uk/information/what-is-the-pituitary-gland/
This explains the test for Prolactin and it may be that you have higher levels, some people do and it is inherited
http://www.labtestsonline.org.uk/understanding/analytes/prolactin/
I hope others will be along to give you some encouragement.
(((((hugs)))))
I think people are willing to accept that diabetes is the cause of some medical matters but there has to be an explanation as to why. Some Doctors forget that not everything is diabetes related.
Totto
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Hooked, have you had thyroid hormones tested? Not only TSH but the actual thyroid hormones, FT4 and FT3? Tiredness, aches and pains and poor memory can be symptoms of hypothyroidism too, not only diabetes, as can hair loss and a lot more. If your outer eye brows are sparse then I´d say it is your thyroid or possibly pituitary tumour but the latter is very rare.
Have you ever banged your head? Concussion? Accident of some kind? This can lead to pituitary problems.
Have you ever banged your head? Concussion? Accident of some kind? This can lead to pituitary problems.
satindoll
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I had all the symptoms of an overactive and underactive thyroid including the goitre and for 18 months all my tests kept coming back as normal till the dr said it had to be all in my mind, except I had this huge goitre in the front of my neck, then some bright spark did a FT5 test which proved my thyroid was working overtime because it had been under working for many years and had grown huge to do its job, after the op where they removed over 2 lbs of goitre it has, touch wood, worked normally and I have not had a problem but I do have the FT5 test yearly just in case.
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Totto
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@satindoll I never heard you could test T5? Happy you got it sorted!
@Hooked check what earlier test results you have. Usually it is only TSH they test and this is a pituitary hormone that tells the thyroid to get working. If your pituitary isn't up to scratch you may have perfectly normal TSH but too low thyroid levels so you need to get the free thyroid hormones tested. You can never, ever pick up secondary hypothyroidism through TSH.
And yes, concussion can cause pituitary problems years later.
@Hooked check what earlier test results you have. Usually it is only TSH they test and this is a pituitary hormone that tells the thyroid to get working. If your pituitary isn't up to scratch you may have perfectly normal TSH but too low thyroid levels so you need to get the free thyroid hormones tested. You can never, ever pick up secondary hypothyroidism through TSH.
And yes, concussion can cause pituitary problems years later.
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Hi @Hooked,
I've had VERY raised prolactin levels for... um... I think 30 odd years. So I may be able to shed some light.
And if there is anything you would like to ask, please do, on here or by PM.
As I understand it, normal prolactin levels are usually around 0-100 units. Lactating women can go up to 400 units.
Without medication, I run at 2000+
If your doc said 550 (a guess?) then you are a little high.
Perhaps if I tell you a little about my situ, it will help.
Irregular periods. Weight gain. Great difficulty losing weight. Aches and pains in feet, knees and tendons.
Insane food (carb) cravings.
And I really do mean INSANE. Not something that could be dealt with by normal eating.
They all started in my late teens. Then menstruation stopped completely (every cloud!).
In my 30s I finally got a doc (female) who was willing to stop bullying me to lose weight, and actually run some tests. 18 months, 2 MRI scans later, and I got a diagnosis of micro prolactinoma of the pituitary.
Basically, many tiny tumours throughout my pituitary gland. They put me on Cabergoline, which blocks prolactin production.
My periods started again (boo hiss) and I was able to lose about 1/3 of my excess weight. Then I stalled. I did feel different though. More... Um... Feminine. If that makes sense.
I asked them to increase the med dosage (to try and lose more weight), but they refused. Too much risk of side effects. My last prolactin test result was around 1200 and has been stable there for years.
I've never produced any milk (they can't understand why).
The reason you were asked about headaches is because the pituitary is right next to the optic nerve, so a swelling on the pituitary may press on the nerve = blinding pain.
If you every get that, get to a doc ASAP.
I get tendon/foot pain and hypermobile joints too, because prolactin is the hormone that softens the tendons ready to open up the pelvis during childbirth. So my tendons are permanently soft and stretchy.
Please do not be alarmed at any of this.
If your levels are just above normal, you have nothing to worry about.
And I have lived with this for decades, reasonably happily.
Please, ask anything, if you like.
(The vast majority of prolactinoma - tumours on the pituitary gland - are benign. I actually knew mine was benign long before my doc did. I just went online and read up about it. Worked out that the symptoms I had matched this thing exactly, worked out that I had had the symptoms at least 20 years at that point, and concluded that if it had been cancerous, I would have already been dead! It was a bit of a relief.)
I've had VERY raised prolactin levels for... um... I think 30 odd years. So I may be able to shed some light.
And if there is anything you would like to ask, please do, on here or by PM.
As I understand it, normal prolactin levels are usually around 0-100 units. Lactating women can go up to 400 units.
Without medication, I run at 2000+
If your doc said 550 (a guess?) then you are a little high.
Perhaps if I tell you a little about my situ, it will help.
Irregular periods. Weight gain. Great difficulty losing weight. Aches and pains in feet, knees and tendons.
Insane food (carb) cravings.
And I really do mean INSANE. Not something that could be dealt with by normal eating.
They all started in my late teens. Then menstruation stopped completely (every cloud!).
In my 30s I finally got a doc (female) who was willing to stop bullying me to lose weight, and actually run some tests. 18 months, 2 MRI scans later, and I got a diagnosis of micro prolactinoma of the pituitary.
Basically, many tiny tumours throughout my pituitary gland. They put me on Cabergoline, which blocks prolactin production.
My periods started again (boo hiss) and I was able to lose about 1/3 of my excess weight. Then I stalled. I did feel different though. More... Um... Feminine. If that makes sense.
I asked them to increase the med dosage (to try and lose more weight), but they refused. Too much risk of side effects. My last prolactin test result was around 1200 and has been stable there for years.
I've never produced any milk (they can't understand why).
The reason you were asked about headaches is because the pituitary is right next to the optic nerve, so a swelling on the pituitary may press on the nerve = blinding pain.
If you every get that, get to a doc ASAP.
I get tendon/foot pain and hypermobile joints too, because prolactin is the hormone that softens the tendons ready to open up the pelvis during childbirth. So my tendons are permanently soft and stretchy.
Please do not be alarmed at any of this.
If your levels are just above normal, you have nothing to worry about.
And I have lived with this for decades, reasonably happily.
Please, ask anything, if you like.
(The vast majority of prolactinoma - tumours on the pituitary gland - are benign. I actually knew mine was benign long before my doc did. I just went online and read up about it. Worked out that the symptoms I had matched this thing exactly, worked out that I had had the symptoms at least 20 years at that point, and concluded that if it had been cancerous, I would have already been dead! It was a bit of a relief.
)
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Lesleywo
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Another cause of elevated prolactin levels can be caused by stress .... I had high anxiety/panic attacks and ended up in A & E once and my prolactin levels were around the 2000 mark. Turns out the anxiety/panic was caused by too much thyroxine so had to have the dose reduced. But I imagine any kind of stress could raise levels
Dogbutler
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Hi Hooked,
Your latest prolactin levels are slightly raised. According to my consultant, normal is around 300 - 400.
I had a prolactinoma (pituitary tumor) diagnosed 10 years ago with levels of 4000+. It's a hell of a shock to be told that you have one of these in your brain, even though you are also told not to worry, as they are almost always benign.
My tumour had probably been there for about 15 years before diagnosis (that's how long I'd been virtually period free, my gp told me I should be glad not to have them- it was only when I mentioned it to a female locum, I actually got tested).
Ten years on I still have the bloody thing and still take medication for it. I'm 53 and as tests show I'm not yet pre-menopausal, I'll be taking the stuff for the foreseeable.
The biggest problem with having a pituitary tumour is the affect it has on the hormone system in general. The pituitary gland is regarded as the 'master switch' and controls all other hormones. Since 2004, I've developed hypothyroidism, growth hormone deficiency and diabetes, which all bring their own problems.
I haven't written this to frighten you (I seem to have had this for 25 years and I live a pretty normal life), but to make sure you know about the issues surrounding pituitary conditions.
Don't let your gp fob you off - make sure you get a definite diagnosis so that you can make informed choices about your health.
Wishing you all the best,
Your latest prolactin levels are slightly raised. According to my consultant, normal is around 300 - 400.
I had a prolactinoma (pituitary tumor) diagnosed 10 years ago with levels of 4000+. It's a hell of a shock to be told that you have one of these in your brain, even though you are also told not to worry, as they are almost always benign.
My tumour had probably been there for about 15 years before diagnosis (that's how long I'd been virtually period free, my gp told me I should be glad not to have them- it was only when I mentioned it to a female locum, I actually got tested).
Ten years on I still have the bloody thing and still take medication for it. I'm 53 and as tests show I'm not yet pre-menopausal, I'll be taking the stuff for the foreseeable.
The biggest problem with having a pituitary tumour is the affect it has on the hormone system in general. The pituitary gland is regarded as the 'master switch' and controls all other hormones. Since 2004, I've developed hypothyroidism, growth hormone deficiency and diabetes, which all bring their own problems.
I haven't written this to frighten you (I seem to have had this for 25 years and I live a pretty normal life), but to make sure you know about the issues surrounding pituitary conditions.
Don't let your gp fob you off - make sure you get a definite diagnosis so that you can make informed choices about your health.
Wishing you all the best,
