Husband- pituitary cyst - just need to vent

[lovesT]

TLDR: my husband has recently been diagnosed with a pituitary cyst/ tumor (it sounds bad, but thankfully not too scary). It was diagnosed due to headaches for months and tiredness etc. He has been furloughed since March so we are at home together all the time. We also had our first baby at the start of the year. I'm struggling, and really hoping the medication works soon as it is making us all miserable.

He hasn't been himself this year, it was kind of unnoticed for a while because of our new baby etc but he's exhausted all the time, headaches make him miserable and he has mood swings which mean he gets frustrated very quickly. Obviously with a demanding baby that's extra difficult!

I am trying my absolute hardest so look after him, support him and take the load off when it gets too much but I'm really feeling the weight of it all 😭. I can't deal with the moods, and miserable atmosphere much longer 😢😢. It has been months. He's a great dad and loving husband but has changed so much because of not feeling well. I know it isn't his fault and I'm really trying to keep is together but I just needed to vent somewhere anonymously.

Anyone has experience of a pituitary adenoma? He is on low dose cabergoline and will have more blood tests soon to see what is happening which is good.

I'm just exhausted being a mum, part time student and trying to do all the housework and look after him. I don't feel like I can get out much either because of Covid restrictions and we don't have money to throw around at the moment.

I'm trying to keep positive for us and our baby but ...

It's hard.

Thanks if you read it x

Yes, I had one about 15 years ago and was treated with cabergoline successfully. I recall the headaches and tiredness. I know it’s tough for you, but his symptoms should resolve. When is his next MRI/check-up?

@Milomonster thank you so much for replying. That's great to hear the treatment was successful! His cabergoline is quite a low dose at the moment and he only has it twice a week. He is getting his second prescription of it next week, so he has only been on it for 4 weeks. He will have blood tests within the next couple of weeks but that's all we know so far. He had his first MRI which diagnosed it about 2 months ago but we have moved and therefore moved GPs so having to update the GP and wait for any referrals etc. How long did it take for you to feel the medication was helping? I think his is fairly large unfortunately.

I just want him to feel himself again!

Mine was 15mm. No suggestion of surgery unless it was pressing on the optic nerve. So ask him to look out for any visual disturbances. I can’t recall exactly how long it took to fee ok again but I really don’t think it was months. It was a relief knowing why I felt so shit. What I can say is that I’m no longer affected at all. I had prolactin levels checked this week and will know on Tuesday if all is still ok. Wishing you and your family all the best.

Thank you again. I've had a rest away from it and feeling a bit more positive again, I think it just feels like a lot sometimes and I feel like I can't help him (which I can't really!).

That makes sense, thankfully he hasn't had any visual problems, just constant headaches and the other things that come with it.

Yeah we feel better knowing what is causing it and there is finally hope after months of the symptoms. Hopefully we will start to see some improvements soon then.

I hope your prolactin levels are okay. We will hopefully know more after his next blood tests.

Thank you 😊 wishing you better health too.

Could he be depressed as well? He could speak to his Gp about that and possible medication. If he's not feeling himself between headaches? If you normalise his bad moods then nothing will be done. Don't excuse bad or disrespectful behaviour as part of the illness.

@sadie9 no I don't think so, he's not constantly low, just a lot more than usual.a Unfortunately mood swings is one of the symptoms (so is depression actually) because it plays with your hormones. He's not horrible, it has just been a difficult time for us both. He has even said himself he feels frustrated more quickly because he feels so rubbish a lot of the time. We had a lovely walk yesterday and laughed together in the evening so we do have good moments, but it just feels like he's miserable with headaches a lot more than he's feeling okay. But I will keep an eye on that as it's worth watching out for. He's fed up with it too 😕.

I’ve had a pituitary tumour for 15 years now. My prolactin levels were initially around 6000 but now 600 - they haven’t ever managed to get them below that. I take cabergoline once a week. I say this kindly but your dh sounds depressed. And that’s understandable, it’s horrible having headaches and a new condition to worry about but the great thing about a non cancerous pituitary issue is that they can be managed really well! Generally anyway. If he is having a lot of painful headaches then he must talk to his GP - there are painkillers he can take (I’ve had all sorts from Amitryptiline to Gabapentin and Codeine, I don’t take anything apart from the odd paracetamol for pain now).

I’ve got lots of autoimmune conditions as well as the pituitary issue - I have Addison’s, lupus, sjorgens, hypothyroidism and long term anaemia. I also have kidney issues and asthma. I am like a walking medical cabinet and take about 20 meds a day. The pituitary tumour is actually the thing that bothers me the least! They’re very good at monitoring it and adjusting the meds as necessary.

He needs to try and stay positive, as hard as it is!

@Bagelsandbrie thank you for your reply. He seems better the last couple of days but I will keep that in mind and talk to him about it. It's tricky as we have just registered with the new GP so feels like we're having to catch them up on everything.

Thankfully 99% of the time ibuprofen seems to help his headaches so that's good, but good to know there are other options. I'm glad yours is being managed well!

Thanks again for your reply. It's good to know more about other people's experiences as it is totally new to us.

I’ve recently got diagnosed with a brain tumour like this. I also have Sjögren’s. I can’t help thinking there might be some relationship between the two. I also have had long-term anaemia which no one has been able to explain to me and low salt levels.

If you have one autoimmune issue you are likely to develop more unfortunately.