Idiot GPs... and stuff!

So my Endo wanted me to continue with a maintenance dose of Cholecalciferol after I'd completed the 6 week high dose course. I know there are pros and cons etc etc, but I'd agreed to take it last time I saw the Endo so requested it from the surgery. Admittedly, there was a mistake in the Endo's letter where it said a maintenance dose of 8,000 - 1,000 units daily should be prescribed, which was obviously wrong and should have said 800 - 1,000. So when that went to the chemist it confused things no end and I had to get back to the surgery in a long roundabout route, which involved a telephone appointment with my GP to say try using your brain. Well of course the prescription had been written by someone else, not him apparently, though I wouldn't know because my prescriptions go straight over to the Chemist. I started taking them and had the most horrendous weekend with my brain fog totally out of control, pounding in my head, pulsing in my ears like that was my heart in my ears or something and other symptoms I've forgotten. I don't really remember that weekend now. The family considered taking me to A & E but apparently I wouldn't let them! Perhaps I should have let them but All I did, was stop taking the medication. 48 hours later, I was "normal", (well as normal as normal is these days anyway). You've probably guessed that the GP gave me Cholecalciferol WITH CALCIUM!! Admittedly, I should have read the small print and realised there was calcium and not taken it in the first place. I don't know why I didn't because I always do, but I can be terribly stupid and forgetful and I think I just thought I had read everything. Anyway, it was a silly thing for me to do, but a bleeping ridiculous thing for my GP to prescribe! I had to wait over a week to complain because the surgery receptionist said I had to speak to the GP an there were no appointments available so I had to wait a week for another telephone appointment, (which was yesterday). He rang, 2 hours after the appointment time so he hadn't much time because he obviously wanted to go home. After I pointed out that he was a prat, he had to apologise and said it was lucky I stopped taking the medication because I was probably "a bit overloaded with calcium" on the way to acute hypercalcaemia... 

After I'd been a bit annoyed and he'd said he'd write me out a proper prescription because the cholecalciferol was doing its job and raised my Vit D level, I asked for the results of my DEXA scan, which he didn't know were available. I did, because I'd rung up for them and the receptionist told me I couldn't have them, or even a copy of them because I had to speak to the doctor... Anyway, he had to find them, open the document and read them and he was in a huff because this phone call was taking too long. I asked for the scores, he said he couldn't evaluate them now, but that I was "pretty much ok". That was it! There's not much you can do or say when someone rings off. Well obviously swear a bit   

This morning I rang the surgery and told them I wanted the printout of my results and the receptionist wasn't sure... but agreed to print them out when I said my Chiropractor needed a copy. When I picked up the printout, I found that the spine T score was 0.1, so normal, but the hips are -1.4 and -1.2 and say the classification is Osetopenia. Well that's what you call "pretty much ok" apparently.

I've been feeling dreadfully fogged in the brain department for weeks, even without the calcium overload. My concentration is near zilch and I try to avoid driving the car very far because I don't think I'm safe or that my reactions are quick enough. I find myself slurring words because I'm concentrating on getting them out so much. My daughters finish my sentences because they're more tuned in to what I want to say than I am. I'm lethargic, except when annoyed by stupid GPs! if I could crawl into a hole and shut life out for a bit, I'd welcome it. And everyday I wait for the postman to call and he never has a letter with my surgery date mapped out   

Your opinions are valued! Don't tell me off for not looking at the medication; I've already done that and so has everyone else. I won't be doing it again. It's a shame I can't trust my GP though.

It's taken me so long to type this because of spellcheck popping up every other word, that it's nearly time for bed! I hope it makes sense.

Love
Brigitte x

Oh, Brigitte, what a terrible time you've been having. You did really well to get through all of that relatively unscathed.

I know what you mean about waiting for the letter with some idea of the surgery plan. I can't remember (!) where you are hoping to go for surgery and who with, but maybe it's time to call the endo or surgeon's secretary to find out?

Although I've been referred to FP at the Hammersmith, that was 10 days ago now and FP's secretary has no idea where I am in the system there. I hate to keep calling/emailing her to remind her that she promised to ring me back and tell me where I am (in total cyberspace, no doubt) but it's only the pushy patients that move things along, it seems .....

Look after yourself, Brigitte, and keep us posted.

Love and Cats from Tigerlily          xxxx

Brigitte you are so right about idiot GPs you doctors sound much the same as mine and it's his fault about the tablets not yours. If you were not as capable and were and old person you wouldn't have necessarily known that you shouldn't be taking calcium any way and just carried on !!!!!
You really sound like you are going through a rough time and it's so hard to explain to anyone other than another sufferer what if feels like to be so unable to control your own mind and body.
I do hope you get that letter very soon.
Lots of love Amanda xxxx     

Brigitte

In case you haven't seen my later post, I decided to be the pushy patient anyway and just called FP's secretary at the Hammersmith and she told me I'm booked in for an appointment on 13 August.

When you are feeling up to it, maybe a call (beyond your GP, so to speak) to your endo or surgeon's secretary might get you some news, too. I do hope so.

Love from Tigerlily xxxx      

Dear Brigitte,

So sorry to hear that not only are you having to cope will all your symptoms but also such appallingly poor treatment from your GP.

I had the same reaction (joint pain, headaches, tinnitus, nausea, brain fog) when put on vit D3, though fortunately without the additional calcium it wasn't as severe. when I went to the GP he said it was probably 'just a virus' and I should keep taking the tablets. Needless to say I ignored him and stopped and the symptoms went away again. I now refuse to see that particular GP. I also refuse to take the tablets much to their annoyance but they don't really care as vit D insufficiency isn't seen as a big problem. 'Oh, you feel down...well just have some anti-depressants instead'

One of the things in my grand, wildly over-ambitious (currently draft) masterplan to reform services for pHPT patients is to get the guidelines for vitamin D rewritten to include a warning about hypercalcaemia. Currently my local health authority hasn't even a mention of pHPT or hypercalcaemia in their guidelines, which I find absolutely shocking.

My surgery has agreed to write a letter to support a private referral to the consultant responsible for writing these guidelines, though this is because I'm pushing for a DEXA scan and don't qualify through the NHS because of my age. I figure even if he turns out to be hugely unhelpful in my own quest for treatment I will at least have the opportunity to bend his ear about the guidelines.

Really hope you get some better experiences Brigitte. The DEXA definitely backs up your case, just need someone intelligent to actually look at it. 

Lots of luck and keep us informed,

Love
Dee

Hi Tigerlily, Amanda and Dee 

Tigerlily, I have been referred to a surgeon at Southampton General, who is supposed to get off his proverbial backside and and offer me an appointment with him and then a surgery date but none has been forthcoming. My Endo said it "should" happen "over the summer" but since he's away until September, who knows. My next appointment with him is 24 September and he expected me to be done and dusted by then. When I first heard the surgeon's name, I misheard it and thought it as Mr Rude (and thought that sounded about my luck  ). Actually, it's Mr Rew and he's done over 1100 parathyroid or thyroid ops apparently. He's unfortunately a bit of  busy chap because he also specialises in breast cancer and benign disorders and does lots of other surgeries (hernias, gall bladders etc), so because he's such an all-rounder, he's much in demand. All I can find out is that my referral is "in hand" and that's about it. When I had to go for my mammogram etc, I was supposed to see him, but he was called to A & E and I saw his underling instead. If I'd seen him, I could have asked!

Thanks for the support Amanda. Today's post was a bill and a some junk mail, sadly.

Dee, I agreed to take the Vit D because there is an (unproven) link between  taking epilepsy drugs and Vit D deficiency. If I don't take it in some form, the D level keeps going down whereas if I take it it keeps me at a better level, though still low. I don't seem to have violent reactions unless too much calcium is running around my body! It's not feasible to start messing around with my anti-epileptic by adding blackouts and/or fits into the pHPT mix!

I do agree that there should be warnings about hypercalcaemia though. Nobody seems to worry about it much with pHPT patients, because we're all hypercalcaemic anyway to varying degrees. My daughter picked up the correct Vit D tablets this morning and they didn't come with any patient information at all! Nothing, just a sealed bottle of D-Vit³ tablets. Surely there should be some information, even if it's one of those peel back labels. I had to look it up on Google since my paranoia was setting off an alarm in my head for some reason   

I've forgotten how old you are Dee, but you would have thought anyone with pHPT should be offered a DEXA. I think I did ask for mine though and my Endo decided it was important to provide a baseline because I haven't been through menopause yet. It was probably lucky I did have it and since I know my GP is a prat, at least I know I can (eventually) talk to the Endo again.

Love and hugs
Brigitte xx & some       for luck!

Hi Brigitte,

It's great you got a DEXA. Amongst the idiotic things my endo said to me was 'only post menopausal women can get osteoporosis'. Er, what about patients with messed up calcium homestasis which is left untreated?

I'm only mid-thirties so technically at the peak of my bone density.  I'd like a DEXA as a baseline too and in my case to help gather evidence for normocalcaemic primary hyperparathyroidism, as another idiotic thing the endo said was 'you cannot have pHPT unless your calcium is over 2.6'. Oh really? Well 30% of these patients with surgically proven pHPT might just disagree.

Since a diagnosis therefore rests on either me waiting years until my calcium is 'unacceptable' in their eyes or the local health authority catch up with the 21st century. I'm keen to establish my current bone density (all this started with severe hip pain). I know I don't have osteoporosis (yet) but it would be very helpful if there at least some signs of pHPT related rapid bone turnover that would help my case.

I can kinda accept the local DEXA is in high demand and I'm not a priority so that makes me less bothered about paying privately. Not being prepared to retest my vitamin D more than every six months because of the 'NHS guidelines' on the other hand really annoys me since it's one of the main factors keeping my calcium within 'normal' range.

I totally understand you not wanting to mess up your epilepsy medication and if vit D helps with that it's definitely the lesser of two evils. As far as I can work out it's the rate of change of my calcium levels that is the thing that makes me feel sick, not the overall level. Which partly explains why some patients can get up to very high levels over a number of years without realising - they just do it slowly enough. Obviously it's still not a good thing with serious long term consequences.

I've been trying to gently raise my vit D levels over the summer with limited sun exposure and it makes a huge difference to my energy and mood. I'm waiting to see what effect it has on my calcium/PTH. I definitely tolerate it a lot better than the tablets.

I hope your surgeon gets a move on             Argh! First time using emoticons and it's all gone a bit crazy. I'll try some cats         

Love
Dee

Oh Dee, your Endo doesn't really sound as though he's on the ball  I wish they would all get their acts together and provide the same and positive treatment in every hospital. Sadly that seems too much to ask.

I go through stages with the nausea thing. Sometimes I hardly want to eat and feel sick all the time. Sometimes I feel sick all day, but am starving by the evening meal and sometimes I'm stuck with heartburn so I can't tell if it's that that's making me feel nauseous as well. I went through a stage where I seemed to put on weight for no reason, though my current phase is that I'm losing weight however much I eat. Not hugely, but the trend over the last 2 or 3 months is going down. I've lost 6 pounds since May by doing nothing. I do log what I eat and what exercise I do in a phone app, but that's more to see what I'm lacking in and to make sure I keep the calcium intake on the lower side.

I'm not really fond of sitting in the sun and I can't see that it boosts my energy levels since it's more likely to give me a headache. But I hate it when the weather is dull and rainy because it's too depressing! Woe is contrary me!!

Where are you in the country, Dee? I hope they move into the 21st century soon. Fingers crossed for you and also hoping that you can find some way to get a DEXA scan done too.

Love and hugs and not forgetting cats!     
Brigitte xx

I lost nearly a stone last year without doing anything different, I've since put most of it back on and, though I don't weigh myself as a rule, I feel like I'm still gaining. As symptoms go, it's not high on my list of worries, but I would like it to settle down just so my clothes fit properly. 

I'm in Wales, the border of which was recently described as the 'border between life and death' by David Cameron. Hmmm nice. On the plus side we all get free prescriptions and all NHS Wales hospitals and surgery are on the same computer system so can access results easily. So even if our waiting lists are totally out of control it's not all doom and gloom.

I have been tempted to move to England just to get access to the choose and book system. We are not allowed any choice over where we are treated. I hear Hammersmith is very nice.  

Love and hugs back,

Dee

And of course cats....     

Brigitte, Brigitte, Brigitte, welcome to the world of dingbat doctors!!! I am so sorry that happened to you! I especially like when a doctor makes a mistake and doesn't have the b---- to admit it and apologize! And there are a lot of them out there!

I am not sure why you were prescribed vitamin D at all if there is a chance you might have hyperparathyroidism. Of course, it was doubly stupid of him to prescribe D with calcium!!!

If Dr. Norman knows what he's talking about, and I think he just might, vitamin D can raise a person's calcium level. It is perfectly normal to have low vitamin D when having hyperparathyroidism. If your calcium is extremely low, and you have secondary HPT, then vitamin D would probably help, but if you have primary HPT, and your calcium is already high or high/normal, you probably should not be taking vitamin D.

The first time I had my PTH tested, when all of my symptoms first appeared, it was found to be 112.0. My calcium was only 9.8 at that time. My vitamin D was 25. My doctors all felt that I had a vitamin D deficiency and prescribed massive doses of vitamin D. Shortly afterward, I happened upon Dr. Norman's website and read all he had there regarding vitamin D. I took the vitamin D for a couple of months, not wanting to go against my doctors advice. My calcium continued to rise. So did my vitamin D level. It rose to 99!!! My doctors still felt I needed to take the D supplements. I finally told them that i did not want to take the vitamin D any longer. I printed the info from Dr. Norman's site and gave all of my doctors a copy. They still felt that i should be taking the vitamin D, but I refused. It took me 3 years to get diagnosed, and it was Dr. Norman who finally diagnosed me. I'm sure my doctors still thought I had a vitamin D deficiency, right up until the day I had 2 parathyroid tumors removed from my neck. I'm not saying you should go against your doctors wishes, but please read up on vitamin D and check out Dr. Norman's site, if you haven't already, before you decide to continue.

Good luck!!

Audrey

By the way, I LOVE the title of this thread!!!     Here's a clown in honor of all of those idiot doctors out there!

Audrey

Thanks for the clown Audrey! I sort of feel that I have one over Dr Dippy because I found out what he wasn't going to tell me. A few seconds of superiority and I felt good (briefly)

The reason why I had Vitamin D in the first place was because of the link with anti epileptic drugs because I take, what is now a very old drug, and has more connections with Vit D deficiency and long term use than newer drugs. I've been taking it for 22 years and am therefore dependent on it. My Endo considered that it was more likely that I had been Vit D deficient long term because I had been taking cod liver oil with vit D for over 10 years and my level was still low so that my body had decided to maintain the level at the low rate because that was all it could manage. Only of course he said it in proper words, unlike me! I had a series of blood tests to find out what happened to my calcium levels in case they went bananas, (insert proper word instead of bananas), but my calcium has only ever got to 2.79 so that is its highest (recorded  ) level.

I'm not the hugest fan of Dr Norman in that I like to look at a broad range of information about HPT and not just his website. Besides, there were other factors that had to be taken into consideration with existing medical conditions when my Endo decided to prescribe the Vit D so I was giving him the benefit of the doubt. Perhaps his idea that it helped recover bone density was flawed though! Or who know, maybe it did help mine.

It becomes a fact that you don't know what to believe and who to trust. Obviously my GP has proved to be a waste of space, but I haven't totally lost faith in my Endo yet. When I have sat on that chair talking to my GP in the past, I now wonder whether he was not thinking about me and my medical problems, but what he was going to have for his dinner! Or maybe I look so old and decrepit (like I feel) and he just saw in front of him a sad little old lady needing to strengthen her bones!!! At least the Endo looks at me, listens courteously to what I have to say and answers all my questions and concerns.

Love and hugs
Brigitte xx

Wow Brigitte that really could have put you in harms way, mega does of D plus calcium good grief. I don't know how low you vit D 25OH is, but I remember Simon saying his was so low that he couldn't even get out of the bath tub by himself. He did say that Vit D supplements helped him I don't know if he  took the mega dose or not.

On the weight loss, I also lost 30 lbs but I have gained back 15  . I have know clue to why symptoms change like that. Still have some tummy issues but rarely have loss of appetite anymore. I told endo I rather be skinny and miserable than fat and miserable. He really had no answer for it.
 Best wishes to you, here is some flowers for you       

Thanks for explaining everything to me, Brigitte. I don't blame you for not just going by Dr. Norman's word, or just any other 1 doctor's word. It is always best to research thoroughly in all cases. Sounds like you're doing a great job of that.    I always do the same.

I am surprised, though, that your doctors felt you needed vitamin D if your calcium was as high as 2.79. That is rather high. Do you happen to know your PTH at that time? My highest calcium here in the US was 10.7, which, I believe, is 2.68 when converted to UK numbers. I'm probably still missing something here, but I'm not getting this.

Sorry to hear you're also dealing with epilepsy on top of the HPT crap. It sounds like you have the epilepsy all under control. I'm very happy to hear of that. It will be nice to get the HPT behind you!

Audrey

Audrey, no one has ever said I have really high calcium so I was led to believe it wasn't that bad. I can't remember what my PTH is because the last few times Dr Fool has forgotten to test for it. I haven't really bothered about the blood test results to be honest, because I was always getting surgery from the moment I first saw the Endo because I fitted into the criteria, being under 50. I'm feeling like I'll be more than 50 by the time they get round to scheduling the op! I haven't really cared about test results because I hate dwelling on myself. I've had medical issues all my life and I hate thinking of me and my woes and most of the time I just don't want to know. The bone scan results were important though because it affects the way my Chiropractor adjusts me and I live for having my neck put back in alignment! The whole thing about HPT is that you end up with so many symptoms that you can't help but think about yourself and your aches, pains and agonies. It's only because of everyone here that I don't think I need to be declared mentally unstable. Now and then I rouse myself into action and find out more, but it never seems to get me any further. It's written on my hospital notes that I have a high pain threshold: perhaps they think I can wait longer! I'm even on the higher priority list because of my age apparently. I pity everyone on the slow list! Aren't I the pessimist?!

Thanks for your thoughts and flowers Kathi. My vit D 25OH had gone up to 39 last time (I think, though my brain isn't reliable). I just weighed myself earlier and I've lost another 4lbs since last week. Sometimes I lose a big load and then put some back on, but there is a downward trend. Like you say, I'd rather be thinner and miserable! I don't really feel as though I've lost a lot, but all the waistbands on my clothes are too loose. I have been particularly starving this week and eaten loads as well! I'm not going to let it bother me because I'm tired of thinking about me!

Love and hugs
Brigitte xx

Love your reason for edit Brigitte   
Amanda Xxxx