GP appointment - were my expectations too high?

Endo wrote to me, copy to GP, saying that following Dexa scan I have osteoporosis. GP sent letter with appointment, this was my first visit to a GP for several years.

I was told how to take the two medications and that I would have another scan in a couple of years. No mention was made with regard to how this will affect me, what I should and shouldn't do and whether anyone actually 'manages' my condition.

So ... am I right to feel a bit hacked off? After all, a pharmacist could have given me this info. Meanwhile, GP is receiving funding points for what exactly?

[Parbrook]

Do you have your parathyroid blood results?

You may be interested in visiting hyperparathyroid.org.uk for some useful information.

By the way, the only person who will "manage" your condition is you, so you need to get copies of as much information as possible (blood and other test results), learn about what they mean and this will put you in a better position to ask questions and challenge what you are being told.

[Hidden in reply to Parbrook]

I'm no longer under the NHS for hypo, I just expected the GP to do a bit more than tell me how to take the medication.

[Parbrook in reply to Hidden]

Only if you ask. Even then, they may not know. My GP did not have a clue about the different options for taking T3, so I was telling him!

[Hidden]

Frustration is the order of the day! I had exactly the same experience with my Dexa scan and I had travelled to Kent from Shropshire because the Endo had been recommended to me. Compared with the comprehensive care, and ongoing aftercare, given to my partner when he had a heart attack in November, it seems we are the Cinderellas of the NHS

[Hidden in reply to Hidden]

I think that yousurname is right though, in that the only person with the ultimate interest in our good health, is ourselves. There is also the frustrating problem that both patients, and doctors, are mere humans, and sometimes in a relationship between the two we gel wonderfully, and bounce off each other so that proactive and effective treatment ensues; and in other situations we don't gel at all and even worse, we rub each other up the wrong way. That then can get in the way of us getting the right treatment. And vice versa. My current GP is very pleasant, and we have wonderful conversations about anything and everything (on Friday we were debating the effect on the Chinese population, of that nation's economical growth, and increased accessibility to western diets, leading to a decline in its health .......) but it didn't get me NDT. At least though, because he is approachable, I went armed with a bagful of the books I have bought and been reading, to show him that I was taking action myself, along side also expecting him to play his part in improving my health. It can be difficult to drive ourselves forward, if we aren't feeling well, or are feeling worried about our health but yousurname is spot on, about the power of knowledge and informed questioning.

Good luck

[Clutter]

What medication have you been prescribed? My sister had osteopenia post RAI for Graves and was prescribed Alendronic Acid and calcium. She had to stop calcium as it was leaching into her blood so I assume regular blood testing should be done.

It's important to remain vertical for two hours after taking AA as it can cause gastric problems.

[Hidden in reply to Clutter]

I've been prescribed Calceos plus Alendronic acid. I told GP that I have low stomach acid due to thyroid and daily took something for it. She ignored that! I've started taking Strontium in any case.

[Clutter in reply to Hidden]

Be careful en.wikipedia.org/wiki/Stron...

I'm waiting for an appt for a Dexa Scan and AA will be the endo's drug of choice if required but he said that there are other options.

What are you taking for low acid?

[Hidden in reply to Clutter]

Yes, I've seen that and others but the one I'm taking is the citrate version. Can I ask why your endo is doing the prescribing? My ex-Endo seems to have left it to the useless GP. There's been other threads here on osteoporosis, the search function threw up a good number.

I take Molkosum every morning before breakfast, it suits me far better than apple cider vinegar and I don't want to stop taking it.

[Clutter in reply to Hidden]

Endo prescribes initially and GP does repeats on his advice/instruction. One GP refused flat out to alter dose because I was under the endo. Current GP is better than that but I don't want hassles with the practice. This way works for me.

[Hidden in reply to Clutter]

I strongly suspect that Endo wanted rid of me as I disagreed with him! He's got his way, I'm done with the NHS.

[Clutter in reply to Hidden]

Disagreed with mine in Feb, had quite an argument, since when he's been very supportive. Really could have done with the support 12/18 months ago when I was very fragile

[Kaarina]

I am afraid that GPs do not know much about OP as I have found out. I tried the Alendronate and it did not suit me thank goodness. I was tried on another drug from the same family and that gave me side effects too. GPs seem to always try you on AA first - may be because it is cheaper. If the truth be known I was relieved as I wished to be prescribed Strontium Ranelate as on reading up and talking to others with OP this seems to be one of the better drugs to be on. We are the guinea pigs I fear when diagnosed with OP. I joined the US Inspire OP Foundation forum which is great for information and also the NOS forum here in the UK. There is a small group of people there that help and support each other.

Ask your GP to have your Vit D levels checked. I decided not to take the calcium tabs dished out by the GP and hopefully get my calcium from my diet. The GP prescribed me Vit D tabs only. I have some calcium tabs in reserve should I feel I have not taken enough calcium on any one given day. To date I have not touched them. Glean as much information as you can on OP and make your own decisions as to what you wish to do.

[Angel_of_the_North in reply to Kaarina]

Those bisphosphonates are truly nasty drugs and don't actually improve bone health - make the bones denser but more brittle so you are more likely to have a bad fracture. Strontium looks like a much better bet. No chance of jaw necrosis with strontium either.

A humourous take:

saveourbones.com/fosamax-al...

[Hidden in reply to Angel_of_the_North]

OK, thanks for that.

[Kaarina in reply to Angel_of_the_North]

Totally agree with you Angel of the North. I liked the link

[Hidden in reply to Kaarina]

Thanks for your reply. Are you taking Strontium now? GP wants vit d tested although I've always taken a daily dose of 5,000iu.

I don't trust the NHS with my health and would research anything they told me.

[Kaarina in reply to Hidden]

Yes, I have been taking SR since 2013,with no side effects that I am aware of.

[BillieSt]

I was diagnosed with osteoporosis a couple of years prior to having thyroid problems, put on Alendronic Acid weekly dose and also daily dose of solulable Calcium with Vit D. Management of osteoporosis is taking meds and being sent for further Dexa scan every two years, plus making sure you have a good calcium rich diet and take weight bearing exercise such as walking and I do my 50 'jumps on the spot' each morning which were recommended. The Alendronic Acid can take some time to get used to, persevere though and your body will get used to it. Take it first thing in the morning with just a large glass of plain tap water and remain sitting upright for at least half an hour ... sounds a bit 'Fawlty Towers' doesn't it!

[Kaarina]

Weight bearing exercise is very important. I also do jumping jacks, lunges, walking, tai chi. AA and other meds in that same family are taken once a week and Strontium Ranelate is taken every day in the evening two hours after food. It is a powder that you dilute in water. You must not eat for two hours afterwards either. If I eat late I make up the mix and when I wake in the night to use the loo I drink it then. K2, magnesium citrate and boron are good to take daily too.

[Kaarina]

Super slow weightlifting is very good for OP. I have not tried this only because I cannot find anyone in my area who does this. I have heard of people who swear by it though.

[Clutter in reply to Kaarina]

Cinnamon-Girl, Angel_of_the_North @Kaarina

If you are still taking Strontium Ranelate you will have to see your GPs to arrange for an alternative as SR will be discontinued from August.

pulsetoday.co.uk/clinical/m...

bmj.com/content/354/bmj.i5109

[Hidden in reply to Clutter]

Thank you Clutter for highlighting this. I was only taking a strontium-type supplement that I purchased myself and stopped it some time ago.

[Kaarina in reply to Clutter]

Hi Clutter,

Yes, I was well aware that unfortunately SR is to be discontinued in August. I have follow ups with a doctor in the endocrinology department re OP and have an appointment with him in July to discuss this. Thank you for the reminder