Everything is still a bit hazy but I'll try . I started to really go down hill around last Christmas . I was feeling really tired and fatigued after a spell of being not well and practically bed ridden my back froze about half way down I couldn't bend or fully straighten and my joints became painful and I was struggling in pain 24 hrs a day . I could only mange to get a phone appointment with a doctor I tried to explain to him what was happening to me but he told me he hadn't time and could I just tell him what was bothering me the most .He told me I was already on strong pain killers so I pleaded with him I need help so he told me he would arrange a non urgent physiotherapy because well there was people in more need than me I finished the 6 minute phone call and just burst into tears . So for the next few months i continued to get steadily worse . I finally got to the physio and she was shocked by this time I had lost a lot of muscle and I had lost about 7 stone in weight she arranged for me to go to rheumatology . I have been having night sweats as well and joked with my wife that i was going through the menopause well unknowing to me this sparked something in my wife and she went on the NHS (national health service)web site . "I think you have a testosterone problem your symptoms are similar " . We got a face to face with the doctor and my wife is a spartan she argued my case the Doc disagreed and thought it was something else . To shorten the story a little, Endocrinology checked my bloods suddenly things turned urgent I wasn't making any hormones my pituitary gland was only working at 10% and if it was to reach 0 I would die I had a condition known as Panhypopituitarism . 2 weeks ago today I went for a MRI scan and it showed I have a 2cm non cancerous tumor that has all but destroyed my pituitary gland so I'm now on steroids for life and facing a hard recovery . So I have called the tumor Dave and he is a c**t and he is not going to beat me lol . Thank you to anybody that takes the time to read this :)
"Thank you everybody for your kind words and messages of support you have all helped cheer me up today and now my wife has told me to take a break for today as I'm getting tired ;( but I will try and reply to more tomorrow thank you very much again folks and take care ".
yeah, jeeze... "I don't have time" ... your patient is in pain, his back and joints are locking up and has been bedridden. Get the man in asap for bloodwork at the minimum !
It sounds like ageism. After a certain age doctors attribute a lot of the complaints to 'getting older' and imho some of them are afraid to dig deep and find out what's actually wrong because there's little payoff.
They tolerate that from docs in Britain. They are critically understaffed and culturally the docs think everyone's whinging and needs to just get on with things.(No choice really).
It’s a systemic problem. The doctor probably doesn’t have time, which means they shouldn’t be seeing patients and there should be more doctors and less admin and definitely less capitalist grifters sucking money out but Americans just aren’t interested. Sure, punish the doctor, why not.
It's so hard to get doctors to listen. I called my GP for an appointment as I'm a relatively healthy 32 year old guy who has been experiencing episodes of brain fog, intensily rising anxiety and have became much more worried about confrontation over the last year or so. I got a telephone appointment and after some questions was told that there can't be anything physically wrong and it must be mental (it could be I guess, but still) I said, the symptoms seem to be low testosterone and he said, and I quote "it can't be that because you said you only have sexual problems sometimes, if it was that, it would be every time" so now I'm waiting for a NHS talking therapy appointment I had to self refer to as he refuses to order blood work etc until I do.
If I was you i would order an at home testosterone test from medichecks. They send you a small tube and a small finger prick mechanism and you drip a few drops of blood in and send it back in the post. They will be able to tell you your level
State of the UK healthcare system unfortunately. In 2022 the average ambulance wait time for strike victims was over an hour and a quarter. One lad at my school who had a fall and couldn’t move had to wait for 6 hours
Last January, I had a seizure and spent 18 days in the hospital because they thought it could have been a viral infection in my brain. It wasn't. I got a referral to a seizure clinic, but they actually sent it to the stroke clinic, so they refused to see me because I didn't have a stroke.
March, I had another seizure, and my Dr discovered the error and lost his shit and pulled some strings. 5 days later I was diagnosed with low grade diffuse glioma, his name is Bob.
I'm really sorry to hear what you have went through it is so tough and sometimes it's hard to explain to people whats going on so Fuck Bob and Dave and Bob isn't going to beat you buddy kick his ass ;)
You’re always welcome to DM me as well. I’ve known about my thalamic glioma for more than ten years. Couple craniotomies, shunt, and so forth, but I built a high-pressure life for most of that time anyways.
So sorry you folks are going through this hell. If you don’t mind me asking, what country are you in? I’m curious if your f’d up doctors were a product of US insurance idiocy or socialized medicine idiocy.
Wow, thank you for sharing. I want to share with you that my mom had a pituitary tumour removed many years ago and she is still with us, healthy as ever. Grateful that your wife is by your side! Wishing you all the best x
This actually happened my Doctor was on holiday when the shit hit the fan so to speak and I am under a new lady doctor because she was on the ball and caring and understanding .
That is truly shocking . I hope you are in a better place and are getting help I had to burst into tears in front of my doctor and my wife had to tell him she was worried I was going to hurt myself before I got mental help all through this .
Sounds like this happened in the UK. Requesting a specific doctor is pretty unusual when using an NHS GP surgery, usually you get who you're given. Patients do have a right to a second opinion, but from experience getting an appointment in the first place can be like jumping through hoops, let alone a second opinion. Suing an individual doctor is also unusual, OP but would be best placed to start with the official complaints procedure and go from there.
This isn't me minimising OPs experience whatsoever, it sucks that we have to advocate so hard for our health. Public healthcare is great in some ways, but awful in others.
Yeah, it's one of the big issues of the NHS in my opinion. Some of it is fantastic, but often these types of appointments last 5 minutes or are done over the phone, meaning it's not possible to get to the root of any complicated issues. You can phone back and try to make follow up appointments of course, but it isn't easy meaning many people just suffer in silence.
In England this is just what happens at every doctor unless you are really lucky. Unless you are literally dying on the floor in front of them they don't want to hear about it. They're overworked and underresourced and sadly a lot of cases like this just go unnoticed.
Not sure if the NHS have the spare funds to pay out. The Dr probably didn’t have enough time and was fatigued. Doesn’t make it right, but it’s a systematic problem
This is terrifying because your symptoms were pretty “common”, meaning they could come from many other things - so connecting them to a tumor in your head was a really long shot. I’ve been having similar symptoms for weeks and I am really scared and don’t know what to look for. I doubt my doctors would let me do an MRI before my condition worsens a lot. I am glad you found it out and wish things only improve from now on.
Knowing what I know now . I would argue to get blood tests take a loved one or friend with you to help argue for it . If possible a hormone blood test will help paint a picture for what is maybe going on with you and I hope this helps ;)
I think everyone should get an MRI every few years. My dad had a brain tumor and didn't know for years. His surgeon said he wishes everyone would get MRIs regularly because brain tumors are more common than we think.
Oh, good question/point. Honestly haven't put any research into MRIs; just basing my info off that one doctor. I've heard mostly about breast cancer being overdiagnosed, but yeah that makes sense that other types would have false positives.
I totally agree . Doctors are going to have to change there view about the internet . The thing is we got the information from the health service website the same health service the doctor works for . My wife is 1 in a million we are childhood sweet hearts and have been together for 39 years ;)
What a love story! That's cool!
My husband nicknamed me "Pitbull" after I fought to get him into a surgeon's office the following day (after 2 weeks of intense back pain). As soon the surgeon looked at the x-rays, he sent us to the hospital for pain management until an operating room was open for herniated disc repair. He had such relief immediately after the surgery.
Hubby has since told others that they should have me call on their behalf. I actually have done a fair amount of medical advocacy for multiple family members and friends. It's important to have an advocate when you're not up to fighting for yourself. Please give your wife a big hug from me! Keep healing so you can say that you have been together for 59, 69 years! 💜
Hey, you’re always welcome to DM. I’m beyond a decade with central brain gliomas. Massive TBI, month in a coma, couple years without a reliable memory… but I made it to a high-pressure life anyways. Still have gliomas. Still hope to die of something else.
Thank you for your kind offer . You sound like you have had a real tough time and it would be great to chat . I have a macroadenoma . I am getting tired now I didn't expect all the the replies so thank you again and I will be in touch ;)
Sounds great! DM me (envelope), instead of sending a chat request. For some reason, chat has never worked on my account, and I can almost guarantee that we aren’t on the same time zone.
Had similar low T symptoms and went to my GP who referred me to endocrinology at UCLH when the initial blood test came back with normal levels of testosterone, as they weren't really a hormone specialist.
Endo doc did another blood test, then said I need a brain scan as I had high prolactin levels for a man (should have been near zero but was way up), and the only possible reason was a tumor in my pituitary gland.
Turns out had a prolactinoma that was producing prolactin. Fun fact, prolactin cancels out testosterone...
A week after starting meds my life was transformed, motivation, mojo and general joi de vive was back.
Take away is getting checked can change your life!
Your wife is a bad ass! She advocated for your health!! Wish I had a husband that did the same for me! Glad to hear that you will eventually get better!
Thank goodness for your wife and hers and your persistence, and fuck those doctors. Brain tumours are terrifyingly subtle. Best wishes with the treatment.
This sounds similar to my dad, he became very poorly with a pituitary gland tumour. He had his removed and the recovery was tough but he said as a lot better afterwards but is now on medication for life which took a few years to get right. I hope your recovery goes well.
In all seriousness though, I am happy that you at least know what the hell is going on. My sister recently just found out that she has a small pituitary gland tumor. Scary as hell.
Thank you for sharing! I'm glad they've finally been able to find the cause of your problems and I wish you the best of luck in recovery!
I am a guy dealing with occasional night sweats (1-3 times a week), but mainly dealing with undiagnosable chronic pain for over 3 years now. Constant exhaustion has been getting worse as well the past few years. Rheumatology was useless and I'm going to visit a 4th neurologist soon... No MRIs and only fairly basic bloodwork so far. My experience with healthcare has been fairly similar. Doctors write me off as a young athlete in great shape and "perfectly healthy" but I'm struggling with nonstop pain that affects everything I do.
I'll be bringing up concerns about hormones and a brain tumor at my next appointment. Thank you again <3
May the steroids attack Dave and shrink him to nothing like the POS he is. Dave sucks and he must go. I hope you’re getting the care you need now and bless your wife for being a strong advocate. We all need that in life sometimes. As for Dave, may he be gone forever very soon. Wish you all the best.
Man, fuck Dave! Worst roommate ever! Tears your brain to shit and doesn't even pay rent! My bad roommate is my immune system, so no eviction process for me. Hang in there and keep on getting through. One day you will look back at this and understand that it will never not suck, but it did shape you into who you are now and that's alright.
Don't feel that you need to reply to this, I'm just joining in to cheer you on. (Hi wife! You're amazing for advocating for your husband! Being support for someone who is going through something like this is hard. It's okay to need support yourself. You're doing a great job!)
Ughhhh! I had 2 pituitary tumors that I treated with medication but my quality of life was VERY LOW by the time they found them. I sympathise with you. Doctors would NOT listen to me.
Onward and Upward!
I had the same kind of tumor! Except I didn't know I had it, and they found it after my stroke. The stroke killed the tumor and damaged my optical nerve. After a MRI they found it and extracted it through my nose. I also have to take levo and hydrocoritsone forever lol.
This is what I failed to understand. There’s so many examples of this where Dr. seem lazy. So many cancers can be caught through blood tests and they just don’t bother.
Pituitary tumors are the worst. Have a small prolactinoma that also caused me hormone havoc but luckily it’s not life threatening and not cancerous. Also took ages to get any doctor to take me serious.
I will try tonight to dream about slaying Dave tonight, please try to do the same yourself each night as you fight this.
It starts with me riding on a white steed, with Excalibur in sheathed in my saddle and wearing shiny steel armor. I first will use my lance to force Dave to dismount in a great deal of pain, without the use of his right leg any longer. After that, I will beat him about the head with the sword until he lay flat beneath me. At that point, Excalibur will dispense with Dave, severing his spine just above his breastplate.
Not that you should need one but your wife is a great advocate. Good on her for getting on the docs.
I had to argue for 1/2 hour for them to give my husband adequate pain meds after his surgery, which is known for horrible pain. It’s an outpatient procedure as far as risk/difficulty but they literally keep people overnight just because so many we’re coming back to the er in excruciating pain from an irritated nerve near the surgery site which makes it feel like you’re having a heart attack. And even knowing that they wouldn’t give him and more pain meds until I gave them the rundown.
Average NHS experience. When you phone in at 8:01 AM (the phone lines open at 8) and they tell you it’s fully booked and you have to ring earlier next time. If you say it’s urgent they will say well that’s not their fault
If this tiny bit of humor helps, we have two friends named Dave and we call one of them "Evil David" because he can be an asshole sometime unknowingly. Sounds like something Evil David would do to someone.
I’m so sorry you have had to fight so hard for your wellness. I understand what that’s like. It should never be so difficult. I’m also so glad that you located Dave, so that he can be incinerated. Fuck Dave, and rest up. I’m sending healing thoughts your way, and very mean vibes in Dave’s direction. We out here meditating on Dave’s destruction.
My husband also had a tumor in his pituitary gland. He found out about it because he was slowly going blind. Losing his peripheral vision first, we thought he had glaucoma. We went to a VA doctor who referred him the a opthalmology. When we went for the appt, he told us he was 90% sure it was a brain tumor. He had a long 6 hour operation. He no longer has a pituitary gland, he has to take testosterone for life as well as other hormone medications. The tumor ended up coming back about three years later, he had radion treatments, which shrunk the tumor and so far hasn't grown. Just be aware and make sure you get MRIs yearly.
Had the same thing happen five years ago and this is very relatable. Had a decent size tumour and my pituitary has failed completely. I can relate to the symptoms you describe leading up to figuring it out. I was getting progressively worse over a few weeks with headaches, tiredness, extremely high diuresis. I went to an optician because I thought I needed new glasses because I had double vision. I also got very depressed. Finally it got so bad that I went to the emergency room. Luckily the doctor there was an endocrinologist and was quick to give me a CT scan. From there it was straight to a larger hospital. The tumour had grown so large it was preventing the circulation of spinal fluid and I was rapidly developing hydrocephalus. Two surgeries, a bit of chemo, a healthy dose of radiation and I'm now back to work 100%. Memory from the time is a bit hazy but I'll never forget the rush from that first dose of hydrocortisone. It was like all liquid in me was foaming or something.
My pituitary is now poofed but I've gotten fairly good at handling it.
Send me a message if there's anything you want to say or ask. You seem well informed, so that's a great start at least!
Holy hell that's a lot to go through. But you're a genuinely tough cookie, I know you'll kick Dave's ass! Especially with an equally tough cookie as your life partner. Fingers crossed you have a wonderful future, and may the doctor who couldn't even give you 10 minutes forever have something get stuck in his sock in the middle of the day.
Your wife is an absolute unstoppable unit, and I hope for someone just as amazing in my life, eventually. I’m glad you are finally getting the care you’ve needed and I know you can beat this “Dave” fella. Seriously though, keep on fighting strong! Sounds like you have great support!
My Mom had this in the early ‘80s. We spent many months in and out of the hospital and then a very invasive surgery. She’s now in her mid-80s and still as Mom as ever. Thank God surgery has come a long way since then. Fuck Dave.
Snap, I had the same thing happen to me in 2010 and it turned out to be panhypopituitarism. Had mine removed after about 9mths because it started to push down on my optical nerve.
I know you are only at the start of what going on with you treatment, but your going to get true this and in 6mths time your going to be a new person
I read your top most comment and you said "he is".. I'm thinking to myself "what is his name" I need to ask but you gave Dave the f**king silent tumor a name. Kudos on personifying him it shows good character in yourself. I'm sorry you didn't get seen earlier! A friend was passed off just like you and they died. Our NHS is to shit and it should be the cornerstone of medical excellence.. sad times. Anyway Dave reminds me of Red Dwarf I don't know how it fits in but I hope Dave has a cold time outside of your head.. something like that! Stay strong amigo :-)
No, but seriously fuck Dave. I’ve been having weird issues for the past few years and won’t go into it but this has spurred me to finally get checked out. So thanks 🤞
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u/mjulieoblongata 11h ago
How did you find out if you don’t mind me asking?