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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be so fucking worried about this

34 replies

girlproblems · 21/02/2023 11:11

Just want to start off by saying I don’t usually have health anxiety and I’m not usually a worried person, but I’ve managed to worry myself silly about this and can’t seem to shake off the worry. If anyone has any advice I would really appreciate it.

im worried I have a pituitary tumour. I know the chances that I do are tiny and it’s very very unlikely, but I can’t shake off the worry. I’ve got irregular periods (usually 4-6 a year), male pattern baldness (bald patches and a residing hairline to the side of my widows peak), tiredness, horrific headaches and vomiting, sinus pain without actually having sinusitis/toothache, lots of body hair (chin, sideburns, chest, belly button). Other symptoms too but these are most of the main ones

at first the doctor thought it could be PCOS but they ruled that out because my blood test was fine and a scan showed I didn’t have it.

I asked my doctor for a test in case it’s a pituitary problem and they said no and that it’s very unlikely and some people just have weird periods like I do and it’s normal. Especially since I’ve had this problem for 10 years now so they said it won’t be anything serious. They said it’s a tiny tiny tiny chance it’s that and it doesn’t warrant more tests.

like I said, I don’t usually have health anxiety and I know it’s very unlikely to be that, but I still feel so worried about it and I can’t afford any private tests for reassurance.

anyone have any advice? Thanks in advance x

OP posts:
Valhalla17 · 21/02/2023 11:12

Could you be anaemic? Have you had a blood test?

WhereAreMyAirpods · 21/02/2023 11:16

Thyroid checks!

Februarystars23 · 21/02/2023 11:16

A pituitary tumour doesn't make sense. Your symptoms are like PCOS so if you had a tumour, it would be secreting the same hormones as in PCOS, and you said they were normal.

ItsCalledAConversation · 21/02/2023 11:24

Sounds like typical GP fobbing off to me. Insist on a full panel blood check at your soonest opportunity. Tbh the care is so poor these days you really have to take it into your own hands, can you try a (private) online service like Thriva? You get far deeper results than the NHS.

BlueSeaWave · 21/02/2023 11:26

Go to the opticians. Pituitary issues can show up on an eye test by the way they affect things so that’s something you can do for reassurance.

Original poster
girlproblems · 21/02/2023 11:28

Februarystars23 · 21/02/2023 11:16

A pituitary tumour doesn't make sense. Your symptoms are like PCOS so if you had a tumour, it would be secreting the same hormones as in PCOS, and you said they were normal.

Oh, I didn’t realise that! That definitely helps. They said it wasn’t PCOS after the blood test, scan and also by the fact I’m not suffering from problems with my weight and my periods aren’t heavy or painful when I get them.

OP posts:
Original poster
girlproblems · 21/02/2023 11:30

ItsCalledAConversation · 21/02/2023 11:24

Sounds like typical GP fobbing off to me. Insist on a full panel blood check at your soonest opportunity. Tbh the care is so poor these days you really have to take it into your own hands, can you try a (private) online service like Thriva? You get far deeper results than the NHS.

yeah I feel a bit fobbed off to be honest. They couldn’t give me any explanation for the problems other than some people just have weird periods, which I suppose is an explanation in a way

OP posts:
WandaWonder · 21/02/2023 11:31

I had an mri, they discovered one so put me on medication for a year or so

Original poster
girlproblems · 21/02/2023 11:35

WandaWonder · 21/02/2023 11:31

I had an mri, they discovered one so put me on medication for a year or so

Do you mind me asking if you were having symptoms or problems before getting diagnosed?

OP posts:
NewlyDiabeticMum · 21/02/2023 12:30

Have you had your thyroid checked?

Hbh17 · 21/02/2023 12:38

A medically qualified person has said that you're fine, so perhaps this is "anxiety" after all?

RoonilWazlib21 · 21/02/2023 12:44

Have you had a SHBG (sex binding hormone globulin) blood test?

My daughter has no periods at all, severe facial hair (she has a beard, sideburns and moustache - currently seeking referral for laser treatment), tiredness, overweight etc basically PCOS on paper.
Her blood tests came back fine and scan showed no sign of PCOS.

The gynae ordered the SHBG blood test and that came back low or showing that it wasn't working meaning that the testosterone in her body is able to run riot in her system. I've attached a link with more information:

SHBG

Xrays · 21/02/2023 12:52

Why have you suddenly leapt to assuming it’s a pituitary tumour? Have you had your prolactin levels checked - most pituitary tumours in women tend to cause inflated prolactin levels and this is why they tend to get picked up - high prolactin tends to mean no periods etc. Larger pituitary tumours cause issues with vision etc so yes getting checked by an optician is a good idea - and ask for prolactin levels to be checked via blood test.

I’ve got a prolactinoma. It really isn’t a big deal. My prolactin levels were in the 4000s when it was diagnosed some 20 years ago and I’ve been on medication since (cabergoline). It was mainly discovered when I was struggling to conceive but once I started medication about 12 months later my periods returned to normal and I’ve had no issue having both my dc. I am now 42 and menopausal so they don’t worry about my levels now as they’ve stayed around 450 for the last few years which isn’t worryingly high and I don’t take medication for it anymore. I’ve had mri scans and they’ve never been able to see the tumour as they say it must be very small. I do have a lot of other autoimmune issues (lupus, Addisons, hypothyroidism etc), but I’m not sure if this is related. I just seem unlucky. But you certainly shouldn’t be in a panic about it, it’s easily treated if it is that and it doesn’t sound like it is!

spuddel · 21/02/2023 13:09

My friend had almost all your symptoms and was told it was migraines. Her eye test was 'normal' a week before she was rushed in for an emergency surgery, macro pituitary adenoma that was bleeding. Surgeons said if she had come in two weeks earlier, they would have sent her home, most likely to die, as they were not allowed to conduct head surgery due to covid!

Fraaahnces · 21/02/2023 13:12

Sounds like PCOS or an adrenal issue.

spuddel · 21/02/2023 13:14

Sorry just realised you have been anxious and my message won't have helped! So sorry, and as others say, it's unlikely but when you mention the hair, my friend had a lot of hair in odd places for over a decade, not least the nipple area. She was always tired, pale, fine thinning hair, headaches that wouldn't let up where she felt like she had to press down hard on the top of her skull to alleviate the pain. Her vision was never great but the week before the bleed, she went for another eye test as it had worsened considerably and the (crap) optician didn't do a full eye examination by the sounds of things as it was over in ten minutes. It really should have been picked up. A few days later she was vomitting with the headache pain and that's when she went to A&E. They wanted to send her home but her dad, a doctor, persisted and got them to MRI where it was picked up and surgery happened two hours later.

twitterexile · 21/02/2023 13:30

Hbh17 · 21/02/2023 12:38

A medically qualified person has said that you're fine, so perhaps this is "anxiety" after all?

Not 100% sure that's how things work in the NHS these days - you have to advocate strongly for yourself.

NB - general comment, not specific to OP's circumstances

SomePeopleAreJustBloodyStupid · 21/02/2023 13:31

It sounds more like a thyroid condition

Nocutenamesleft · 21/02/2023 15:55

girlproblems · 21/02/2023 11:11

Just want to start off by saying I don’t usually have health anxiety and I’m not usually a worried person, but I’ve managed to worry myself silly about this and can’t seem to shake off the worry. If anyone has any advice I would really appreciate it.

im worried I have a pituitary tumour. I know the chances that I do are tiny and it’s very very unlikely, but I can’t shake off the worry. I’ve got irregular periods (usually 4-6 a year), male pattern baldness (bald patches and a residing hairline to the side of my widows peak), tiredness, horrific headaches and vomiting, sinus pain without actually having sinusitis/toothache, lots of body hair (chin, sideburns, chest, belly button). Other symptoms too but these are most of the main ones

at first the doctor thought it could be PCOS but they ruled that out because my blood test was fine and a scan showed I didn’t have it.

I asked my doctor for a test in case it’s a pituitary problem and they said no and that it’s very unlikely and some people just have weird periods like I do and it’s normal. Especially since I’ve had this problem for 10 years now so they said it won’t be anything serious. They said it’s a tiny tiny tiny chance it’s that and it doesn’t warrant more tests.

like I said, I don’t usually have health anxiety and I know it’s very unlikely to be that, but I still feel so worried about it and I can’t afford any private tests for reassurance.

anyone have any advice? Thanks in advance x

I work with patients with pituitary conditions

Ask for a referral to see an endocrine dr. One who specialises in pituitary conditions or tumours. Not a diabetes if you can. However it's difficult to find one. We don't have many in the uk. If you tell me where you are in a PM I can tell you who there is

Get in contact with the pituitary foundation. They have an endocrine nurse. They're wonderful

If you want to pM me. Please do. Don't let your GP fob you off. Microadenomas are actually more problematic than macroadenomas strangely.

Nocutenamesleft · 21/02/2023 15:59

Hbh17 · 21/02/2023 12:38

A medically qualified person has said that you're fine, so perhaps this is "anxiety" after all?

Ooh!

An endocrine dr once told me something like 70% of us would have a pituitary tumour in autopsy. But we don't do that

They are so so common and GP's don't know enough about them

I think it's really bad form to say that.

Captainbighead · 21/02/2023 16:34

Endocrinologist here. You do fulfil criteria for PCOS - look up the Rotherham criteria. Even with normal bloods you have clinical hyperandrogenism (hair growth, male pattern balding) and irregular periods so that's enough. You can be lean and have PCOS. Your gp also needs to check your prolactin and thyroid. If these are normal it's not going to be a pituitary tumour.

cptartapp · 21/02/2023 16:56

I've just been found to have a pituitary 'cyst' incidentally on an MRI so Nocute's comment is interesting.
No symptoms related to it whatsoever.

Original poster
girlproblems · 21/02/2023 17:06

Captainbighead · 21/02/2023 16:34

Endocrinologist here. You do fulfil criteria for PCOS - look up the Rotherham criteria. Even with normal bloods you have clinical hyperandrogenism (hair growth, male pattern balding) and irregular periods so that's enough. You can be lean and have PCOS. Your gp also needs to check your prolactin and thyroid. If these are normal it's not going to be a pituitary tumour.

Thank you (and everyone else) I feel better about it now.

just to clarify, I don’t actually think I have a tumour and I do believe the doctor when they say that I don’t. I was just worried about it in case they were wrong (even though I believe them) I suppose I just got myself into a panic about it.

I asked if we had done the blood tests to check for pituitary problems and they said no only for pcos but that was sufficient. But presumably if it were a pituitary tumour then the pcos blood tests would have shown something anyway?

is it possible to still have pcos even if the scan was negative? I’m not disputing the doctor that these things can just be normal and weird in some people but I just don’t understand why I’ve got all these problems for no reason. I haven’t had a period since Halloween and I regularly have headaches to the point I vomit. Maybe I’m looking for answers that don’t exist but I don’t understand why this is happening to me

OP posts:
Februarystars23 · 21/02/2023 17:10

girlproblems · 21/02/2023 17:06

Thank you (and everyone else) I feel better about it now.

just to clarify, I don’t actually think I have a tumour and I do believe the doctor when they say that I don’t. I was just worried about it in case they were wrong (even though I believe them) I suppose I just got myself into a panic about it.

I asked if we had done the blood tests to check for pituitary problems and they said no only for pcos but that was sufficient. But presumably if it were a pituitary tumour then the pcos blood tests would have shown something anyway?

is it possible to still have pcos even if the scan was negative? I’m not disputing the doctor that these things can just be normal and weird in some people but I just don’t understand why I’ve got all these problems for no reason. I haven’t had a period since Halloween and I regularly have headaches to the point I vomit. Maybe I’m looking for answers that don’t exist but I don’t understand why this is happening to me

Show quote history

The endocrinologist you quoted literally said you can be diagnosed with PCOS based on your symptoms

Naughty1205 · 21/02/2023 17:10

I'd say perimenopause OP, what age are you?

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