Update after Endocrinidiot follow up visit etc

You'll be relieved to hear that I am cured... of hyperparathyroidism   But that nothing that happened to me from the moment I stepped out of the hospital was in any way connected to the operation, the surgeon or pHPT, or in fact, the hospital, because I was already cured before I left since the numbers don't lie and the calcium and PTH levels were normal. The calcium was in fact only just in normal range but it was normal and all those tingles and twitches were *not* as a result of low calcium but were *obviously* related to the neurological issues which followed (the moment I woke up next morning). My lovely Endo appears to have burgered off and disappeared, but he was only a locum so perhaps he's moved on. The Endo I saw was a complete and utter self-important idiot who sees not the patient, only the numbers. He barely listened to anything I had to say and talked over me. Perhaps he was trying to impress the young student he had with him. I was feeling annoyed and peed off about him not listening to my views on how I had felt (with the tingling etc) and how it was improved by even having a glass of milk and I asked him to explain how your body adjusted from high to low(er) levels of calcium, however much or little in range they may be. He never explained because "the numbers don't lie"! He actually said that! I said I'd disagree and pointed out different practices in this country and indeed the world about providing the patient with calcium after surgery. He wasn't interested. My calcium was 2.21 after surgery and that was corrected up because my albumin is always in lower normal range. I thought that was quite funny really. His view was that I have a neurological disorder, nothing to do with the surgery and it's completely coincidental that within 24 hours of the start of the op, I should be being picked up off the bathroom floor by a paramedic having suffered a seizure which has been controlled by medication for 22 years! Maybe it was coincidence, but he could have been sympathetic, understanding, helpful or not so darned stuck on his flaming numbers. I think it's sad that he's one of "those" Endos who is trapped in a never decreasing circle of not giving a £*#/ about what the patient says or feels and is never likely to look further than his normal range of calcium levels. And he's apparently teaching the next generation of Endo to be as uneducated as he is. I can't remember what else I said, but I did sit there annoying him for some time whilst I gave him my views on hyperparathyroidism and its idiosyncrasies and even if he didn't care, perhaps that student might think a bit more and delve into the subject for more clarity. My PTH appeared to be 5 or 6 whenever it was tested, including last week (when my calcium was at a perfect 2.38). Vitamin D was 48 and fine he said.

I did find out (finally) that the kidney scan had shown a small shadow, likely to be a stone and that he would write to my GP and get him to refer me to Urology for clarification. At that point, I let him discharge me before he burst a blood vessel in trying to get rid of me. I'm glad he wasn't my Endo before surgery. It was bad enough having little faith and lots of negativity from the surgeon without having it from the Endo too. I do think even he would have had to refer me for surgery because my bleeping calcium was 2.98 just before the op. And numbers don't lie, as I'm sure you know by now!!! 

After much to-ing and fro-ing from the GP since October when I came out of my enforced hospital stay and several letters from the GP to the Neurology department, I still didn't have an appointment, either to discuss further the changes in my seizures or the MRI I had last month. Getting rather desperate with the constant headaches and the fact that I'm still suffering some sort of blackouts/seizures, I made an appointment last week with any Dr who was available and poured out everything in a bit of a meltdown torrent of 'I can't go on like this, it's like being trapped inside myself' sort of thing. She was a bit of a school ma'am type (a locum Dr) and I was quite glad she was on my side as she was very sharp but surprisingly understanding. She said she would write to Neurology herself as a priority and that she had a reputation for getting through to consultants. Must have worked because within 5 days I had received an appointment for 22nd December so obviously my GP doesn't word his letters as well as she does! It's for a different consultant than mine as well, so perhaps that's a good thing. I really am quite keen on getting rid of my all encompassing headache and stopping my funny turns. The only reason I think I haven't gone completely bonkers is because having had pHPT, you obviously learn how to persevere through pain and anxiety by pushing yourself through it and carrying on. 

So yes, I have been cured of pHPT. I've noticed in the last couple of weeks that if it wasn't for the headaches, I seem to have got rid of all the other niggles except for indigestion and that's been a problem for more years than I can count. It's been a slow recovery and I'm still unbelievably tired and unfit (and have put on too much weight), but that's all wound up with the head problem and you really don't feel like getting back to keep fit exercises with a banging head! Hopefully, I can get some answers from the neurologist and move on with my life. It would be nice to be able to take the dog out for a walk without the need to take someone with me. It's awful needing a keeper every time you want to go anywhere. I have been out a few times by myself but it's very nerve wracking and at home I usually need to find somewhere quiet on my own to keep away from noise. I hope someone has wrapped up normality and stuck it under the Christmas tree or perhaps the new neurologist can shake up my medication and fix me up! 

Thanks, as always for listening and being there. 

Love and hugs 

Brigitte xxxx

Your endoidiot must be chums with my endotwat as they are both singing the same song, almost word for word.

I think my calcium was 2.21 post op and my surgeon was worried hence the high doses of calcium and vitd.

Your endoidiot is an idiot to say that immediate post op levels mean a "cure" as we all know levels can alter for many months.

Hopefully your appt on the 22nd will be more useful than the endoidiot one.

Nelly

Hi Brigitte,
To my mind it is pig headed arrogance that many endo's take a course in and I do wonder why they want to be endo's in the first place, I used to think it was a calling to try and get people better but some of the experiences I have had over the last year make me wonder whose side are they on?  I for one would heavily bet that the combination of  an anaesthetic and a suddenly lowered calcium might have had a slight input on the events that followed your surgery.  I am sorry that the headaches still persist, they can really wear you down, but maybe with your new appointment next week you will get a newset of eyes reviewing everything, that's what I need, in store the other day and read socks and gravies instead of stocks, I keep doing that all the time and these are new glasses!
Good luck for Monday and big hugs for ypu,
Sue x

Brigitte, I am so sorry you are also dealing with an air-headed endo! I have not yet fired mine, but I don't really need her for anything anymore. I have handed all of my endo issues over to my nephro. He was happy to accept, and he knows more than the endo, so we're all happy. The endo is still clueless.

It is so sad that you are still suffering so terribly, and the idiot won't listen to you! I know that feeling well. It is a shame we all have to struggle the way we do, while we're feeling so badly, trying to get some help! Hang in there, and you keep talking! SOMEBODY will eventually listen!!

Audrey

So sorry Brigitte , Nelly summed it up pretty good saying your endocrinidiot and her endotwat must be chums. I really hope you get some answers soon. Big hug to you. Kathi

Oh Brigitte

I am just so sorry that you are still feeling so bad.   And here I am, blubbering on about how well I feel post op - its not very nice for you is it and I can't apologise enough for being so thoughtless.

I do hope that you can get a resolution in the very near future, I know just how debilitating headaches can be on day to day activities, they are not funny.  But a little light at the end of the tunnel in that without those you feel that things have improved re. hpth.  Also, having to be chaperoned everywhere would drive me nuts, I completely understand your need to be quiet and within your own space from time to time.

I hope you can have a restful Christmas and be able to pursue the medical profession straight afterwards and finally get some long overdue answers.

Best wishes

Anna

Brigitte I am so sorry you are still having to deal with all this crap. Endo sounds like an uncaring robot. I do hope you get more answers from your appointment on 22 nd you need to get the headache and the missing moments properly diagnosed and sorted. 
Love and GBH
Amanda xxxx

Hi Brigitte,

This man isn't just unfeeling, he's downright dangerous in my eyes. With that sort of attitude I really fear for his other patients. I sometimes wonder about all the pHPT patients who haven't done research themselves and aren't that well informed about the condition. They must just accept all the utter drivel spouted from the mouths of endiots like this and suffer even more as a result.

I'd be very tempted to complain to his highest superiors with a massive bundle of research papers and case studies showing the effect of a drop in Calcium (regardless of whether it's within the normal distribution for the general population), I'd also probably include a note about the widespread statistical illiteracy amongst doctors and their inability to understand the difference between absolute and relative numbers. I'd call into question their expertise on this subject and point towards examples of operationing teams who do treat with subsequent Ca with good results and the fact your stay in hospital cost them a lot of money that might have been avoided, not to mention the terrible suffering you were caused. Finally, I'd certainly make a point that this endos attitude is disgraceful and his ego is preventing him from providing the patient-centred care that I'm sure is part of Southampton's mission statement. 

I am obviously a highly irritable HPT sufferer and that could be the high PTH talking. However I do think these doctors need to be answerable to someone. Getting a post-parathyroidectomy good practice procedure in place for Southampton may require a bit of a fight but ultimately would force the team there to face up to the facts. Let me know if you want any help gathering evidence.

I really hope you get some relief from the headaches soon and continue to recover and get to see a consultant who helps to restore your faith in the profession (we can dream, can't we?). 

Lots of love,

Dee
xxx

Thanks everyone, you all make me feel as though I was right to continue to witter on in the face of endoitiot's disinterest just in case it made the medical student question my reasoning and look up pHPT further as opposed to blindly accepting his flawed opinion. Dee, you really are full of good ideas and I think I will make some sort of complaint when I get my head sorted out. I have another battle on my hands with the Neuro as I need to question why information was withheld from me after my MRI 2 years ago, never mind sort out the ongoing problems. I hope this Neuro is a lot more easy to talk to than the last two I've had and not as stuck up his/her own backside as the endoitiot! 

Thanks for all the hugs; they keep me going  And never worry about being happy about how well you feel post op Anna! That is everyone's goal and I think it is especially good to hear positive experiences amongst the iffy ones! It gives us all hope. 

Love and hugs 

Brigitte xxxx