Finally 2 years down.

Hi and a very warm welcome to the online community

I don't have the same type of cancer as you but I noticed that no one had replied to your post yet and I thought I'd see if I could find someone for you to chat to.

I've had a look through some of the more recent posts and found that mememe30 recently posted about having a TSH secreting tumour. Now I have to confess that I don't know if this is the same as you but I've 'tagged' them into my reply and hopefully they'll come along to talk to you.

Even if they don't have exactly the same issue as you it might be good to chat to someone else with a pituitary tumour.

While you're waiting it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi,

I am waiting an MRI to see what I have but I totally understand your frustration and feeling you are not believed. I have been going through this for at least 3 years if not a lot more. I had lots of different symptoms happen this past year plus from severe right arm bicep muscle pains (which led to a diagnosis of impinged shoulder and a cortisone injection) I’m not so sure it was an impingement at all and I felt the muscle pains were linked along with other symptoms as my left arm got it too, intermittently. Then I awoke with excruciating pain in my knee in the middle of a night to discover a large spongy lump on the knee and a feeling of sickly spreading of fluid through my thigh above it. Linked or not? I don’t know but I’ve read a lot of scientific papers which is maybe a good or a bad thing but I am starting to believe I have toxins leaking throughout my body causing a number of different symptoms. I don’t usually have any health problems and the fact the arrived almost altogether makes me believe they are linked. After all hormones control our whole body.

I have also had hives and spots appear in my scalp which enlarged my lymph nodes and again a huge lumpy rash all down my left arm 2 weeks ago.
Then most recently about 5 different eye issues in a 6 month period. I thought they were eye infections as I wear my contact lenses sometimes a bit longer than I should! However these past 6 weeks I felt as if someone was pressing big thumbs into my eyeballs that really hurt and I couldn’t face looking up at a bright sky.

I have finally found a doctor who by pure chance answered my call when I reported yet another eye ‘infection’. He asked me to come in right away. He asked a really important question; do I have gut issues? I said just check my file! It’s full of reports! Again gut issues for the past year or so has had me been told I had acid and as always you just get omeprazole and others which did nothing for me. I didn’t take them after that. 
However this fantastic male doctor has done two lots of blood tests on me now that had never been done in all the tests I had from the previous female doc.

This has revealed high levels of Prolactin, TSH and Cortisol. He said it’s pointing to a possible Pituitary tumour. So I’m currently waiting on the MRI. 
He gave me Dexamethasone (used for covid patients) and wanted to know the outcome after 5 days. That’s tomorrow. So far some of the eye pressure has decreased so it worries me that it does mean I must have a tumour. It’s a scary time.  Anyway, please feel to contact me  anytime you need to talk about it. I worry too that I bore my friends if I tell them too much. 
good luck with your ongoing treatment and healing.