MRI at last

Hi Everyone

You'll recall that I've been on about a possible pituitary adenoma recently, especially since having this strange head-ache for about a month now.
Well on Sunday I started feeling very dizzy as well intermittently feeling as though the insides of my head were being moved from side to side.

I called 111 to discuss this (and was very impressed with that service as well) and ended up at our local cottage hospital seeing an out-of-hours GP who diagnosed vertigo and gave me something to take when I thought it was bad. I took one before bed last night but it didn't help as I sort of fell into the bathroom this morning still dizzy.

It's a long old story, this, but could be relevant for others (especially those with the continuous strange headache sort of in the background and not relieved by painkillers very much).
 
I have read that diagnosis of a pituitary adenoma possibly pressing on cranial nerves in the optic chiasm can sometimes be made from the existence of 2 or more endocrine tumours (for me, the now confirmed pHPT adenoma plus an ovarian cyst 4" max - plus also uterine fibroids multiple, a kidney cyst and a gallbladder polyp, and some strange facial cysts that I've had for years - so generally cysts are defo me), visual issues including poor peripheral vision and other visual field defects, and cranial nerve issues such as trig neuralgia, facial neuralgia and jaw problems, plus (strangely enough...) fairly frequent acute diahrroea. Lovely!

This odd combination should prompt further investigation and I did mention it to both Dr M L and Mr F P, but it all sort of got lost in translation and wasn't given any credence (as the pHPT wasn't by other professionals).

So with the addition of the strange headache and the vertigo, I got a bit panicky this morning. Reason being, that I had been "signed off" by secondary care as having secondary HPT due to Vit D deficiency, and couldn't get back into secondary care without a GP referral back into that sector. I've been convinced for some time that a pituitary adenoma might be the problem so I called the last consultant I saw (who also diagnosed secondary HPT due to Vit D def and possibly also incipient Munchhausen's ....), and totally confused his secretary so she asked him to speak to me. He surprised me by saying that even he would not be able to order an MRI scan to rule out a pituitary adenoma (what???), but he did think that the Eye Clinic (that diagnosed the visual field defects and lack of peripheral vision) would be able to.

So I got a GP appointment this morning with a locum GP to try and get referred back to the Eye Clinic (how people fare with this system who are unable to bend it and be their own advocate, is totally beyond me .. as Peter said in the car, they just have to put up with it all, be pushed from place to place with no-one joining up the dots anywhere, and they finally die of something that looks totally unrelated, but was probably the unnoticed cause of their trouble in the first place - I can't say how sad I find that, and I can see that it's probably quite true).

Well, I couldn't have been more surprised. Young Dr Sanjit Singh was totally ahead of his game and knew more about HPT (primary, secondary and tertiary) than all the endo's registrars and consultants I've seen put together! He even knew about the body keeping Vit D low sometimes to prevent more Ca being absorbed from the stomach and making an already elevated serum Ca go even higher!

And his bedside manner was perfect: "Mrs Tigerlily, you are not going to go away from this surgery today disappointed in any way. I can see that you need an MRI scan of the head and you are going to get one from me. Yes, there are guidelines to follow that would normally prevent you from getting an MRI via a GP but you need one and I'm going to make sure you get one urgently. Do you have any visual problems? Yes, I thought so. I can see that you might be a candidate for Multiple Endocrine Neoplasia Type 1 and I expect you've already thought of that. Let's hope it's not that. I think a worst case scenario would be a small adenoma of your pituitary gland pressing on some of your cranial nerves and that can be easily dealt with. At the end of (I first wrote "endo of" - got 'em on the brain!) surgery here today I will call the radiology department and organise this for you. They will call you back with an appointment time."

Phew! If that all comes off as he plans, I should know quite soon if it's just a lone pHPT adenoma, or possibly a bit more complicated (but as easy to deal with).

Impressed?? You can see the thumb marks all over me and I'm almost inside out!          

Off back to bed now to rest my vertigo-head, but I am having a good day today!!

Love from Tiger  Lily   xxxx

Hi Tigerlily,

That's brilliant news. Dr Singh is definitely a gem in the NHS. He's a locum? Please, please send him round to everyone's surgery once you're done with him.

Also, he gets massive kudos for being determined to override the NHS guidelines and do what's best for the patient when needed.  I've not met any doctor prepared to stick their neck out like this, not yet anyway.

Really pleased for you. You definitely deserve good treatment after all the nonsense you've put up with previously.

Love
Dee

Hi Tigerlily
Well you've definitely got that ball rolling, I've got visions of Harrison Ford in Raiders of the Lost Ark and all the useless medics being squashed by the big cannonball thingy.  
I'm so pleased by how it's all coming together for you.
Send Dr Singh my way pleeeeeeeeeeeezeeeeeeee.                  
Love Amanda xxxx

Hi Tigerlily,

I am sorry to hear about all of this, they really need to standardize test for endocrine, as nothing seem to be able to be ruled out. You have shown such determination and I am so please that you have found people to listen .

I agree addenbrookes ultrasound dept are  really helpful and restored my faith .
I hope you get answers soon and they start to do a treatment plan.

wishes you all the best

Need more cats              

best wishes

Lozza 

Hi Tigerlily

Sorry you have been having dizzy spells and headaches. I am so glad you ran into a good doc to help you. When will you get the results? In May when I seen my endo he ask me if I had ever fallen, matter of fact his nurse ask me that question also. I am not sure why. Maybe he expected me to be dizzy or maybe because phpt cause's muscle weekness. Not sure where he was going with that. Please be careful you don't fall and break something.

Lozza is right you need more cats.            Kathi

Wow Tigerlily, you are on a roll at the moment!     How wonderful to find the perfect locum at the right time. I'm really sorry to hear you seem to have vertigo problems to add to everything else. Make sure you take care of yourself and don't get up too quickly so you can be sure of your bearings. We don't want you falling over at all, so make sure Tiger    and Lily   aren't underfoot either!!!              

Love and hugs
Brigitte xx

All sounding very promising, Tigerlily!! Good to get the pituitary checked out. I too have had various tumors and cysts. My list includes 2 parathyroid tumors, a thyroid nodule, multiple uterine fibroids (my uterus weighed 3-1/2 pounds when it was removed, due to the fibroids. Normal weight is about 8 oz.), and surgery to have 2 large cysts removed from my back and butt (both of these were several inches in diameter). Don't know if those count, since they were not actually endocrine cysts; although, it could have been glandular issues that caused them.

So happy you are finally getting some answers and the help that you so badly need!

Audrey

Thanks All so much for your support - bed now, but back tomorrow.

Hugs for all the cats!

Love from Tigerlily xx