Bad day at the Clinic

So I was hoping to update everyone with some progress but it seems things are going backwards at the moment.

My referal back to endo finally came through and whilst I wasn't expecting them to suddenly have had an epiphany regarding hpt diagnosis and treatment I thought it would at least give me another set of blood test results. Y'know even on a bad day, I'd at least get some Ca/PTH levels out of them.

But no, clearly after the last disasterous appt when I was told to get lost, my notes have been tainted with something along the lines of 'this is a difficult patient who likes self-diagnosing and won't listen to our supreme god-like intellect' (Obviously I'm paraphrasing, I haven't asked for a copy of my notes, I'm too scared when I read them it will make me so angry I'll turn into the incredible hulk and run rampaging through the streets.)

When it came to the clinic, I'm pretty sure my notes were first picked up by a junior member of the team who after reading decided she wasn't having me, came back out of her office and into the more senior consultants room. After a while I was called in to see him. It started off ok though he did seem keen to impress upon me his vast expertise. He did ask about symptoms and seemed very pleased to give me his expert diagnosis of osteo-arthritis concerning my hip pain despite the fact the x-ray I had didn't show that. Never let the evidence get in the way of a diagnosis though. He skirted round the high PHT issues, basically made out it was secondary hpt due to vit D deficiency. Despite the fact I've never been deficient (only insufficient) and the vit D done in the same blood draw as my highest PHT was normal. Again don't let the evidence get in the way. Had a go at me for not taking enough iron. Rubbished the private tests I had done which annoyed me. Hinted depression/health anxiety might be the root of my symptoms but didn't have the balls to say it to my face. Kept trying to get me to say I had IBS due to stress (which I don't, but thanks to the idiot gastro is somewhere in my notes) He asked what I wanted, at which point I asked if I could at least get my Ca/PTH tested and he said no. I said whilst I understood it was contrary to his clinical judgement would he at least do it for my peace of mind. No.

In fact he said there is no way I can have pHPT because in pHPT PTH levels remain high they do not fluctuate between high and normal. High hyperparathyroid levels do not cause any symptoms, no, none at all. It did matter if my PTH was 10 or 3 there was no way I could have pHPT so there was no point testing it. (He actually said this). He would not under any circumstances allow me to have any bloods done and he was discharging me. 

Once this was established, I kinda felt there was no point continuing the appointment and I'd wasted my morning. However, he kept on and on. Everytime I tried to wrap it up and pick up my bag to leave he just kept talking. The appointment lasted over an hour. On reflection I think he was being so pigheaded because he had it in his mind I was a difficult patient who needed standing up to and that's why he was so adament about not having the blood tests. His poor colleagues had to pick up the slack in the waiting room as a result.

Obviously I cried all the way home and had a bit of a pity party. I felt quite crippled by the experience and didn't know what to do. I talked it through with a friend which made me feel better and I plotted a graph of Audrey's PTH levels (Thanks Dr. Aud!) just to reassure myself that levels can fluctuate all over the place between inappropriately normal and high.

Believe me, if I ever get a diagnosis this man is on my list of doctors needing re-educating. Clearly gonna take a lot longer without further PTH testing though.

BTW, I was previously in touch with FP, who also said secondary, unless of course my PTH fails to normalise. This doesn't fit with my vit D intake and I was hoping further blood tests would help prove this. Now I'm a bit stuffed.


Sorry a long rant but hopefully it's out of my system now and I can move on.

Dee

Hi Dee,
I really feel for you, I really do. I am sorry that your appointment did not go well, it is a horrible feeling when you feel so poorly and nothing is decided except discharging you.  I know how distressing it is and I hope you feel a little better today.  I find it difficult to understand that he feels it is unnecessary to at least monitor your bloods regularly.  I know it is a little different in Wales but is it possible to go back to your GP and request regular monitoring and a referral to another endo??  It all seems so subjective, depending on who you see and so frustrating when they fob you off with codswollop!  I was told only people with above normal urine calciums can have PHPT which is a load of rubbish too.  Just wanted to say I am sorry it did not go better and to send some cyber hugs for you.  I know how hard it is but when you are ready I would go back to your GP and explain how it went and where do you go from here as clearly something is wrong and how do you get to the bottom of it all and feel better?
Big hugs for you, Sue

Dee that doctor is an idiot but you already know that  can your GP refer you elsewhere ? Whereabouts is your calcium as I think that is more important than pth, in my case where pth was fluctuating they were more interested in calcium levels and how they related to pth level.

Take a breather then on with the battle.

Nelly

Thanks ladies, I know you guys have firsthand experience of idiot-endos, endiots. I mustn't tar all endocrinologists with the same brush just because so many of us have had bad experiences, but boy they make it difficult.

So, NHS Wales, has out of control waiting lists. The targets they have to meet are longer than in England and there is no choice even over who you see in your local hospital and no scope for going outside your local trust. The overall message to patients is 'you'll get who you're given and be grateful'

I will go back to the GP. I've decided to wait until my vit D is next due and then ask for concurrent Ca/PTH. I'm worried if I push my luck too much and get Ca/PTH now they won't do it again. Of course they might refuse doing any of these tests but I'm relying on the fact GPs are far more keen to help you if it gets you out the door.

My calcium is fiercely within normal but it fluctuates. 2.52 at it's most but only 2.46 last time, which is makes it not a straightforward diagnosis and why I'd like regular blood tests. Intermittent levels are more common in younger patients.

FP did say my symptoms were spot on in terms of HPT patients, I think that was just to make me feel better though.

Dee
xxx

Hi Dee
I'm so sorry you are having to deal with idiot Endo, I know exactly how you feel 
It's so hard to walk into their offices knowing what they are thinking and that whatever evidence is put before them their opinion is unchanging. I would still get a copy of your notes just so you know what you are dealing with and then you can come back with the correct info to prove them wrong, also I think they are a lot more guarded with their comments when they know you know exactly what they have written.
Keep up that fight, the least they can do for you is to monitor you.
Hugs Amanda xxxx

Oh, Dee. I hope you feel a bit better since you wrote the original post and have felt hugged and loved by the responses.

I don't want to make you go through it all again, but I think you have been treated very shabbily - and unfortunately this is similar to the responses I have had from endo's, an HPT surgeon, and various other medics I've consulted over the last 3 years who cannot see that a varying and sometimes high-in-the-range PTH should not occur with a calcium over 2.5, especially when Vitamin D is not low.

I agree with everyone here who suggests that you go back to your GP, tell them what happened, how the experience has probably put you back months as far as feeling low is concerned, and ask to be referred elsewhere for a second opinion (perhaps after you've got your hands on your notes, the endo's letter back to your GP and the blood test results). Just write off this idiot endo - you often come across these twerps. Put him on your list for re-education when the time is right. 

Rest up for a while, then let us know what you plan to do. I'm sure a few forum members will come up with more suggestions in the meantime.

Love and Hugs from Tigerlily xxxx

24hrs has helped me get myself together and calm down. I am always uplifted by your comments and if it wasn't for this forum I think I would be certified crazy by now. So grateful for the support especially just knowing that others understand.

One other thing that did come up was that the endiot admitted they had had problems with the PTH assays in their lab. Something I spent the first half of this year chasing and which calls into question the 2 low results I initially had from them and with which they dismissed me the first time round. 

What he doesn't realise is that I have this and all his lecturing on tape since I decided to record the appt on my phone. This was for my own private aide memoir since I'm not planning on sharing conversations, some of which revolve around my bodily functions, with the world. However, if he ever decides to deny or rewrite what he said I won't hesitate to provide the edited highlights.

I will wait to see what he writes to the GP before taking further action though.

Hope everyone else is having a good day,

Love and hugs back,
Dee
xxx

Brilliant ruse, Dee! There will be no arguments about what was said. I often do this myself, just to be able remember the details.

Problems with their PTH assays, eh? Sounds to me as if that was the reason he refused you more tests because they haven't got their act together on the testing and he didn't want that to come under the spotlight.
Outrageous. If you tell that to your GP, that alone should ensure that you are referred elsewhere to a hospital that can get the tests right!

Love from Tigerlily xxxx

Oh, my goodness, it sounds like it might be time for my doctors to pass the idiot crown on to your endo, Dee!! Unfortunately, they are not finished wearing it yet!

What a terrible appointment you had! I am so sorry. We all understand perfectly that feeling of desperation and disappointment. I spent many drives home from doctors' appointments in tears. It took a bit of time to pull myself together again, and then I continued to fight. I know you will do the same.

Please feel free to take my lab results with you to your appointments to help with a diagnosis. Show them to your doctors and tell them I had 2 adenomas removed! Heck, tell them to call me on the phone! I will tell them personally!

I still can't understand why this is so hard for doctors to diagnose!! I read Dr. Norman's website one time, and I KNEW I had the disease. That's all it took! I'm not a genius. I just have a normal brain, but I know how to use it!

Please know that you WILL eventually get that diagnosis! You might have to deal with a few more idiots before that happens, and you might have to shed a few more tears, but that time WILL come! I remember waking up every morning so depressed, thinking I would never get diagnosed, but after 3 years, my time finally arrived! Don't give up!

I too was told my HPT was secondary. I knew it wasn't. Oh, why is this so hard? Is it any wonder Dr. Norman calls other doctors goats and monkeys?!!! To be honest with you, I really think he should call them rocks!!

As far as re-educating your doctors, good luck with that! My endo would not diagnose me for 3 years because my ionized calcium was always normal. After surgery, I went to see her for a followup appointment. She looked at my labs and said, "Well, it looks like you've been cured. Your ionized calcium is normal." ?????? She learned NOTHING from my case!!! At my last appointment with her 3 weeks ago or so, she looked at my calcium level (there was no PTH level to go with that) and said, "Well, your calcium looks good. I guess we can stop worrying about that problem." Again...????? How could she determine that a calcium of 9.7 is good with no PTH to go along with it? The first time I had my PTH tested, almost 4 years ago, it was found to be 112. My calcium was only 9.8. But there were 2 tumors in my neck at that time! You can't diagnose HPT with no PTH to go along with the calcium! Obviously, my endo still doesn't know THAT either! So don't count on your doctors learning anything at all from your case. I think they're all rocks!

Stay strong and keep fighting!!!

Audrey

Hi Dee

So sorry to hear that your endo is a fully paid up member of the goats and monkeys club, membership seems to be ever expanding sadly!

I found a really good paper entitled 'mild (Pft!) primary hyperparathyroidism - a literature review Sept 2014' which you might find useful to wave under some noses when you're ready to get going again; unfortunately I still can't copy and paste links (or anything else) here, probably my bonkers iPad, but if you want to PM me your email address I'll send it to you, or you might find it doing a Google search (minus the Pft! obviously).

Keep going forward Dee, don't give up, take some time to regroup and have a few poor me moments then try and find a way to kick the dust up again. 

Jasmine x

Thanks Audrey and Jasmine, i am really encouraged by your support and also your example to me of keeping going despite many trials.

They can shake us but they will not break us.

Much love,

Dee
xxx

Did you see the edit I just added Dee about the paper? 

J x

Oooo good spot Jasmine, Mr Google has found it for me.

Shame the Pft! isn't part of the title - I like it.

Dee x

I've got the full paper so if you can only get the abstract up let me know and I'll email it to you. At last a progressive and forward thinking approach to normocalcaemic pHPT I thought .....

J x

I'm so sorry you've been knocked back in such a way Dee. What a prize idiot your Endo proved to be. How I wish Endos could be re-educated so they don't spout waffle. I'm glad you are feeling a bit better about everything today and am sorry I missed your post about it all. Consider yourself extra-hugged! 

Weren't the PTH assays changed earlier this year? I know my Endo started to request New Method at some point. Sorry if I'm barking up the wrong tree but it could explain why your hospital's lab messed up. 

Take care and don't give up! 

Love and hugs 

Brigitte xxxx

HI Dee
What is wrong with that doctor saying hyperparathyroid doesn't cause symptoms. Ohhh if I was a wicked witch I would cast a spell and give him phpt for a week and then he would never say that again. Take care, you know your body better than anyone so keep fighting for your health.

Kathi

Yes, I remember that, Brigitte. It was in about Feb/March this year. Someone posted about it here - maybe it was Dee herself! - but there was some good information in the post about the variations in PTH assay techniques around the regions - some results coming up as nearly twice some of the others.

Love from Tigerlily xxxx

Yes, the PTH literature review and info re//the Abbott Assay product recall (12 feb 2014) was me. Here's the link again to the paper which is very informative
http://edqas.org/download/Preanalytical_PTH.pdf

Shows how arrogant I am, despite the medics telling me I don't have a problem and the blood tests backing them up I then went on a crusade to prove the blood tests were wrong. That's why I was so happy when the assays were finally sorted and my PTH came back over 10. Like Audrey said, you just sort of know inside when you read about pHPT that it is the most likely answer to your symptoms.

I still have a long way to go to get definitive proof.

Jasmine - thanks for offer, fortunately I can access just about any journal through the university. If anyone else is struggling to get hold of a full paper let me know and I'll see what I can do.

Love to all,

Dee

xxx