how long for a diagnosis

Posted , 7 users are following.

can you tell me how long you all had symptoms of a pituirity gland tumor before you got your diagnosis pleae

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  • Posted

    To be honest I don't know how long I had this tumor. It was accidentally found. I went have my shoulder and neck looked at with a MRI a couple days later my doctor said should an neck new work but there's always a but. She said they noticed black mass with was a tumor measured out at 5mm × 8mm. Just had another MRI and measurement hasn't grown.

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    • Posted

      I went in to have my hands and shoulder looked at.. I had know feeling in my hands or grip and shooting pain going up through my neck. Shoulder doctor sent me to spinal doctor and he finally did a MRI and found the P. tumor. Then out of the blew I noticed my feet grew 2" in just over a year.

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  • Posted

    From start to finish, it took me about 4 years, they kept on taking blood but each time the result always came back as normal. Obviously being male, my tests may be different to mine. But I moved surgeries and the doctor there, who specialised in men's health, requested one more test, which I assumed was for prolactin (as I have a prolactinoma). I assume it came back as elevated, so I was sent for an MRI scan which proved I had a pituitary Tumor. Not a lot of GPs understand pituitary tumors, I've had one GP who actually said to me that she did not know anything about pituitary tumors, nor the drugs used to treat them. But at least she was honest enough to say so.

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  • Posted

    Hello I would say appropriately 7-8 years.
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    • Posted

      With all the different symptoms the GP was either treating them as individual issues and not getting anywhere or totally unable to offer explanations. I think the worse thing I ever accepted and I'd encourage everyone to stand their ground - was to let him tell me that the newly presenting tension headaches over two years was a change in my pattern of migraines!!! This was despite me telling him that these headaches did not respond to any painkiller, I had to go to bed and fall asleep with an ice pack on my forehead. What was established through my ENT consultant was a macroadenoma when he sent me for a CT scan! I'd never let any medic run rings around me ever again. I could have lost my sight- the optic chiasm was so stretched in the air that my neurosurgeon was surprised I didn't experience more symptoms.

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    • Posted

      I am so sorry for you to have lost your sght thats so awful.It has taken me about 1 yr to get the gP to do bloods just had them done this morning II have been back and forth to the docs for I dont know how long with the severe headaches visual problems and other symptoms relating to pituiarty problems  but they would always send me away saying it was anxiety x
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    • Posted

      Thankfully I didn't lose my sight but it has altered over time but I thought it was just wear and tear. I made sure I visited the opticians regularly but it wasn't picked up. I knew something was up with my sight when I had intermittent mist and my new glasses were no longer effective after only 1 year. I couldn't see the train arrival display even with my glasses on.

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    • Posted

      It didn't affect my sight, but I have since suffered a detached  retina, although at the time they didn't know as too why. Maybe it could have been caused by the fact of my pituitary Tumor, who knows, I too have regular check ups at my opticians. I took medication some 14 years, but was taken off it three years ago, my prolactin levels are still higher than they should be, but MRI scans reveal that although I still have the Tumor it hasn't grown. Infact I have an appointment to see the endocrinologist next month, February.

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    • Posted

      i can fully believe that, as if I hadn't changed too a different practice, and the doctor there specialised in men's health, had he not recognised my symptoms, god only knows how long it would have taken for me to be diagnosed. Even after four years I was about ready to accept that they where basically telling me there was nothing wrong with me.

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    • Posted

      My sight is a ot worse now I  havethe same problems seeing things clearly especially from a distance I have had regular checks at the opticians as well but they said it was dry eye syndrome x
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    • Posted

      I can't believe they have let you get so bad with your eyesight. Do you have an endocrinologist, if so what does he/she have to say about it. You could try joining the pituitary foundation, you can google their number. They have a charge of £20per year, they hold regular meetings which anyone suffering with pituitary problems, no matter what, can attend, you will probably meet people with your own problems and they have an endocrine nurse you can contact over the phone. Infact my endcrinologist attends the meetings to give talks. It may even help to give you peace of mind.

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    • Posted

      If you have a pituitary Tumor, I can't understand why your doctor hasn't refered you to an endocrinologist, if you have had an MRI scan and it's been proven that you do indeed have a pituitary Tumor, I would have thought the next step would be a referral, why don't you suggest to your GP, that he make you an appointment with an endocrinologist, after it was proved I had a pituitary Tumor, I was automatically referred to an endocrinologist that was 18 years ago, and I still see him now, I have an appointment next month. Best of luck and best wishes.

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    • Posted

      It's annoying that you have to result in doing this, but I don't blame you for doing so, have you tried pushing your doctor for the results, or even phoning your hospital, it wouldn't be the first time I've had to do this myself. But at least going private will get you the results you obviously require, and seek. 

      Good luck.

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    • Posted

      Hi Kren My bloods all came back ok for the cortisole and the proactiline (cant spell it ) doc says there was no point in getting a head scan cos I had one last year I had a ct and mri cos they thought I had a mini stroke but nothing showed on the scans dont really know were to go now x
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