Osteoporosis etc

[Gillymar]

Reading all the comments re unfriendly doctors etc. I am sorry for you all. I have nothing but gratitude for treatments received over the past years. I have under active thyroid (40 years) Levothyroxine prescribed. Lymphodemia 4 years , surgical stockings , glaucoma , eye drops . Asthma , inhalers. Reflux trouble, given emozol, Osteoporosis (8 years) accrete tabs, B12 injections and ferrous tabs for anaemia, etc. Plus of course the dreaded AA but no on e knew the side effects when I was prescribed it 9 years ago . Result 2 broken femurs and broken vertebrae. Action taken, operations on femurs and Teriparatide injections . I am in pain but cannot fault the treatments given. I am 84. Thanks NHS for all this at no cost to me.

[Gillymar]

Interesting ! I do not know folate. Is it a drug ? I have B12 injections every 12 weeks.

[Gillymar]

Thanks will do.

[Loramay]

I totally agree with your comments my gp is wonderful. My old GP retired and she managed my pain as much as she could. Then along came Dr Sherwell within weeks he had changed my medication for the better. Suddenly I had a life. Since then my experience has been nothing short of brilliant. At the beginning of April I broke my pelvis and back unbeknown to me I thought that it was sciatica when after 3 weeks it was getting no better I went to see my doctor who sent me for an x ray. They immediately discovered what I had done and within 6 weeks I had a ct scan, a mri a osteoporosis scan and seen 3 different consultant's, plus physio. Which I don't think that you would find anywhere else in the world without paying an awful lot of money or have a very good insurance policy

[Kaarina]

I have no complaints about my surgery or my GP. I make a point of writing very positive reviews on their website. What I do feel is that GPs know a little about a lot so cannot always be as helpful as we would hope on certain ailments, especially if they do not see many patients with osteoporosis or restless legs syndrome, as examples.

I like to research my conditions and did ask for a referral to an OP specialist and that was carried out, no problem, by my GP, for which I am grateful. I also discussed my diet with my GP regarding taking in enough calcium and he agreed I only needed to take a Vit D tablet daily as my calcium intake was quite adequate. Are OP patients aware they do not necessarily have to take the combined calcium/Vit D tablet?

I have concern for those patients that are not so pro-active for whatever reason regarding researching their ailments, so can be left behind with minimal help/advice if a GP is brusque/ lacking information on their particular medical condition.

[Emcm in reply to Kaarina]

My problem was that when I mentioned researching OP my Dr looked supercillious and told me not to believe anything on the internet. She had never heard of vit K2 for OP. Was very patronising.

[Kaarina in reply to Emcm]

Hi Emcm,

It is good advice not to believe everything we read on the internet but when we read the same information from different sources I take it as a strong possibility that it could be good advice.

I do not always mention that I have been doing research or that I have joined a forum and get good information that way too. I buy the K2 myself and have not mentioned that I take it because I am aware of what the medics reaction may be. It is not proven.

There was no need for your GP to be patronising. I hope your GP was interested enough to look up K2 and OP. Probably not though.

[Emcm in reply to Kaarina]

I think I resented her assumption that I didn't know that you can't believe everything on the net. I am as educated as any doctor and professionally edited a respected scientific journal. My job was to assess the quality of the papers. But I have had some real horror experiences from most of the Drs in that clinic. Never had problems with other practices so it's not me

[Kaarina in reply to Emcm]

I am sure you did, so would I have been. It often seems to be a standard reply when patients wish to learn more about their conditions.

I am doing it to help myself because I do not expect a GP to know everything about every condition. Shame you cannot change your doctor as you say they are all as bad as each other in your surgery.

[HeronNS in reply to Kaarina]

Just seeing this now. In fact the Japanese have proven that Vitamin K2 is effective in helping bone density. One doctor who had been doing this research when interviewed on a program about superfoods was asked point blank if he considered natto (the source of K2) a superfood and he replied yes!

[Maesyrhelyg in reply to Kaarina]

Kaarina,

I read your post with interest as I have asked two doctors at different appointments in our practice whether I must take the Natecal D3 600 mg/400 I.U. Tablets and was informed by both that the Bisphosphonate tablets need the Calcium and Vit D3 to work properly. I also have enough calcium in my diet and was prepared to take Vitamin D tablets during the winter. I have bought an Oral Vitamin D3 spray 25 in Holland & Barrett so may still decide to stop taking the Calcium tablets.

I had read that the Calcium tablets can cause constipation and hardening of the arteries so am therefore not too keen on taking them as I do suffer with constipation.

Incidentally I was first prescribed them after an XRay on a painful foot showed that I had Osteopenia in the bones so have been taking them for a few years. I became concerned that seeing that I had Osteopenia in my foot perhaps I also had it in other bones. Last year I decided to ask my doctor to be referred for a DXA scan and my results showed that I do have Osteoporosis in the neck of the femur and Osteopenia of the spine. My hip score wasn't too serious at -2.5 . Unfortunately a T- score at or below -2.5 classed me as being Osteoporotic. At my age 74, this can be expected to some extent I suppose. I am 5ft. tall, and weigh just over 10 stone.

The generic AA tablets gave me indigestion and other problems by the way and the pharmacist advised me to ask for Fosamax instead. They suited me better and I have been on them for a year but I am worried about the side effects, especially the Osteonecrosis of the jaw. Hopefully after a few years my bone density will increase and I can stop taking both tablets.

My doctors have advised me that I have to be on both tablets for five years and don't seem to think that I will need another scan at that time. I would feel far happier if I were referred for a scan to find out whether or not taking the tablets have been worth it.

Preferably I would like to take the tablets for three years only, and have a scan then, but I do not think somehow that my doctors will approve. 😏

Like you I like to research my conditions and have become a member of the NOS. Their leaflets are excellent, especially the ones on foods containing Calcium.

I wish that my doctors, like yours Kaarina, would agree that I do not need to take the Calcium tablets!

[Kaarina in reply to Maesyrhelyg]

Hi Maesyrhelyg

Your posting is most interesting to me, too. I do not take AA but am taking strontium ranelate. This was withdrawn at the end of August 2017 so I shall soon finish my prescription and it will unfortunately not be renewed again.

In October, I have a a follow up appointment with the doctor in the endocrinology department where I have gone twice a year to discuss my OP. (I asked my GP if he would be kind enough to refer me to an OP specialist and he agreed). I shall remember to ask his views about taking the combined calcium/Vit D tablet if prescribed AA, even if one takes enough calcium in one's daily diet and let you know his reply.

I would think it would be overload with the calceos or whatever the GP wishes to prescribe if one is eating enough calcium daily, which is as you say not good.

It could be a question for the helplines at NOS perhaps?

[Maesyrhelyg in reply to Kaarina]

I have actually spoken to a nurse at NOS but she could only suggest that perhaps I could only take one tablet rather than two of the Calcium tablets. She advised me to go back and ask my doctor for advice. My doctor insisted that I must take it for the AA to work properly, just as the other doctor had told me.

Thanks very much for offering to ask the Doctor at the hospital about taking the combined Calcium/Vit D tablet. That's very kind of you and I look forward to hearing his/her views on the matter.

Have you decided whether you will take something else instead of the strontium ranelate? I assume that you do not wish to take the AA or Fosamax. The doctors at the practice that I go to have advised me that sometimes people of my age never recover properly from a broken hip so taking the AA tablets will help to strengthen my bones.

" As they say, I am damned if I do and damned if I don't! "

Sorry, I have just edited the post and did not realise that you were able to read the original.

[Kaarina in reply to Maesyrhelyg]

I tried AA and it did not agree with me (stomach/bowel problems) and was then prescribed risedronate which again did not suit me. I asked to be prescribed SR and now that has been withdrawn.

In April, the OP doctor gave me a leaflet on denosumab (total course of 6 injections ie three years of treatment). He was aware then, as I was that SR was being withdrawn later in the year. My reservation is that a side effect is joint pain and as I already suffer joint pain daily (Osteoarthritis) I am very reluctant to take a chance with this drug. This is something to discuss at my appointment.

I have printed off your posting to me and put it with my OP bumph to remind me to ask the question at my appointment. I am interested to hear his reply and will let you know.

[Maesyrhelyg in reply to Kaarina]

I also suffer with Osteoarthritis, especially in my knees and shoulders. I wonder at times whether the AA makes my joint pain worse but I had joint pain before starting the AA and it isn't any worse on the whole and can be due to getting older!

My doctor allows me to have cortisone injections in my shoulders every three months to relieve the pain in my shoulders but I try to hang on longer if possible because of the fact that I am of putting more steroids into my system.

If you do decide to take the AA tablets It doesn't necessarily mean that you will be affected with all the side effects.

I hope that you find a suitable treatment instead of the SR that you have been taking.

Far more research needs to be done into this condition.

[Kaarina in reply to Maesyrhelyg]

Totally agree more research is much needed. We are the guinea pigs as was my mum's generation too. She was on AA for far too many years. Now it is suggested to only be on AA for around 3 years and then to have a drug holiday.....

My joints are not good. I have already had two total knee replacements plus a revision and the knee still hurts every single day. A total shoulder replacement in 2015 and a repair to my deltoid muscle this year and now my total shoulder replacement has two broken screws and two loose screws. Ouch! I have to have another total shoulder replacement next year.

[Maesyrhelyg]

So sorry to hear what you have been through and are still going through Kaarina.

My maternal Grandfather was very short and was bent forward at the waist at the end of his life in his late eighties. My Mother, by the time she reached her nineties had a stoop as well but not as bad as her father. This made me wonder whether I was likely to develop a stoop so made me curious as to whether or not I had Osteoporosis or not.

I asked my doctor whether I could finish the AA tablets after three years as I had read that three years was now suggested. I was told that no, 5 years is recommended which I am not that happy about. I shall cross that bridge when I get to it!

I have thought of asking to be referred to a Specialust who deals specifically with Osteoporosis and treatments for the condition, even if I have to pay privately.

Watch this space! 😉

[Kaarina in reply to Maesyrhelyg]

Hi Maesyrhelyg

As promised I asked the doctor today at my OP appointment regarding if taking a combined calcium and Vit D tablet was necessary if taking AA. His reply was surprisingly that for AA to work it is more important that one has a good Vit D level to make the AA work not so much with the calcium. He agreed if you have enough calcium in your diet there was no need to take calcium in pill form. So, it would appear both my GP and also the Doctor I see twice a year in the Endocrinology department agree. What surprised me was when he said that it was the Vit D that was more important than the calcium intake to make the AA work in the way it should.....

[Maesyrhelyg]

Hi Kaarina,

Last night I posted a reply to thank you for asking your doctor about the Calcium/ Vitamin D tablets but it seems to have disappeared this morning.

How strange!

Did you see my reply?

[Kaarina in reply to Maesyrhelyg]

No, but I have seen this one.

[Maesyrhelyg]

Thanks for letting me know Kaarina. On my phone in the car now, not driving 😉, so will attempt to reply this evening.

[Maesyrhelyg]

Sorry for the delay in replying Kaarina, I felt the need for some retail therapy this afternoon so we went to a retail outlet. I tried on numerous pairs of winter ankle boots and finally found a pair that felt comfortable.

Many thanks for remembering to ask your doctor whether it was necessary to take the combined Calcium/Vit D tablet if taking AA. The doctor and your GP thus both agree that it isn't necessary if enough Calcium is taken in one's diet.

Having asked two GPs in our practice the same question both were adamant that it was indeed necessary. I do wish that they were of the same opinion as your doctors.

As I wrote previously I have bought the Vit D oral spray so will take that during the winter months and just give up on the Calcium tablets.

Thanks again Kaarina. Have you come to a decision as to what you will take now that the SR has been withdrawn?

[ruthmunby]

Hi. I used to take combined calcium and vitamin D pills as well as AA but on a medication review I recollect over 6 months ago my GP said the NHS guidelines had changed and if you have enough calcium in your diet you do not need calcium pills. She also said too much calcium is bad. NOS leaflet v helpful on calcium content in food.

I see my vit D pills have higher content ie 1000 units.

I found out for myself though that you need to take the vit D with something fatty to dissolve it properly. I also take K2.

Best wishes Ruth

[Maesyrhelyg]

Hi Ruth,

Many thanks. At my next appointment with my GP I will bring up the subject again. I had read previously that the NHS guidelines have changed, and hopefully he will now be aware of the change.

Do you get the Vit D tablets from your doctor?

I have the NOS leaflet on Calcium content in food and agree that it is indeed very helpful.

Thank you once again Ruth.

[Maesyrhelyg]

Hi Kaarina and Ruth,

After posting the above I decided to ring NOS. I had read in the Autumn 17 Osteoporosis News about the new Osteoporosis NICE guidance but couldn't find anything in the article about the calcium tablets.

I therefore asked the NOS nurse this afternoon whether the thinking had changed on taking the calcium tablets and she confirmed what you had both written. She confirmed that too much calcium is bad for you.

She also told me that GPs used to prescribe the Calciferol tablet if someone was diagnosed with Osteopenia. That is exactly what happened to me a few years ago.

When I see my GP at my appointment at the end of this month I will tell him what I discovered. I will also inform him that I have stopped taking the Calcium tablet as I am having enough Calcium in my daily diet so I am only taking the Vitamin D.

I will report back after my visit. 😉

Once again thank you both.

[Kaarina in reply to Maesyrhelyg]

Hi Maesyrhelyg

Hurrah! So pleased that you have found out that there have been changes in ideas about the calcium/Vit D tablets if you have enough calcium in your diet. It makes perfect sense to me! tI would be great if you could actually copy something that says this and present it to your doctor!

I have a blood test for my Vit D levels once a year and the result is good. I take a prescribed Vit D capsule daily. I too take K2 which I purchase on line.

I have a feeling if you are diagnosed with osteoporosis you are entitled to Vit D testing periodically. I mentioned this to my GP before I was referred to a doctor in the endo department re my osteoporosis. He said he would look into it and he called me back to say that I was correct and my wish for a Vit D test was granted.

In reply to your question regarding what medication I have decided to take. The answer is nothing for the time being.

When I saw the doctor at my OP appointment I mentioned that I did not wish to take denosumab as I have daily joint pain and was not prepared to take the risk. He said he perfectly understood my decision and said that my joint pain could well get worse if I went forward with the injections.

I had numerous blood tests including Vit D levels and calcium levels after my appointment. The doctor called me the following day to say that all tests were fine and Vit D level was excellent. I put that down to a tin of sardines (with bones) practically every day. Bit boring but appears to be working as I am no longer a sun worshipper (I used to be- far too much! ) as I find now it makes me feel unwell.

I look forward to hearing from you again soon. Look after yourself in the meantime.

[Kaarina in reply to Kaarina]

Hi Maesyrhelyg

This link may help your doctors!

sheffield.ac.uk/NOGG/NOGG%2...

Section 5: Lifestyle measures in the management

of osteoporosis

[Maesyrhelyg]

Hi Kaarina,

Now that I know from what you say that I am entitled to have a test to measure my Vit D levels after being diagnosed with Osteoporosis, I can ask for the test.

Eating a tin of sardines a day including the bones isn't something that I fancy doing 😱, but I shall have a try and report back!

As you say, I would indeed like something to show my GP to back up the developments regarding not having to take the calcium.

Also something to prove the fact that I am entitled to have a test to measure my Vit D levels would be useful as well.

Thanks for the link. I will read it in the morning when my brain can absorb it.

Take care of yourself as well, and I hope that you will find out something soon to help you to decide which medication to take.

[Kaarina in reply to Maesyrhelyg]

Hi again Maesyrhelyg,

What about this link regarding Vit D testing?: cks.nice.org.uk/vitamin-d-d...

I lifted this from the link above:

"Also test for vitamin D deficiency if there is a clinical reason to do so, for example:

Prior to specific treatment where correcting vitamin D deficiency is appropriate.

If the person has a bone disease that may be improved with vitamin D treatment, such as osteomalacia, osteoporosis, or Paget"s disease."

[Maesyrhelyg]

Well spotted Kaarina! Thanks to you I will now have printed evidence to justify having the test to determine the levels of my Vit. D.

I appreciate your help. Thanks very much.

[Kaarina in reply to Maesyrhelyg]

You are most welcome, Maesyrhelyg. I like to google! Knowledge is power!

Nowadays when we unfortunately get health conditions, at least there are various ways and means that we are able to educate ourselves. Some doctors are willing to listen and learn from their patients, others are not so keen and some distinctly dislike their patients knowing more about a health condition than they do. I hope your doctors will be in the former category.

Keep in touch.

[Maesyrhelyg]

I hope that my doctor will be willing to listen too Kaarina.

It's quite difficult to approach the subject as I don't wish to give the doctor the impression that I am going behind his back to find out out things about my condition because I don't have any faith in him or in what he prescribes for me.

With the help of written evidence to back up my request it will make it easier I hope.

Like you I like to learn more about my condition, as we are the ones living with it day to day. Knowledge is indeed power! 👍🏻

I shall definitely report back, hopefully with good news.

[Kaarina in reply to Maesyrhelyg]

I agree, Maesyrhelyg, it is difficult but we are raising awareness by doing it, which is very important. Doctors know a little about a lot health issues and we cannot expect them to know everything. We, on the other hand are only learning about our own ailments. It is teamwork after all between the doctor and the patient, or should be.

[Maesyrhelyg]

I agree wholeheartedly Kaarina.

When I failed to get on with the generic Alendronic Acid I was fortunate that the pharmacist in the chemist told me about Fosamax.

She advised me to ask my doctor whether he could prescribe Fosamax for me instead. I was quite apprehensive as I knew that Fosamax is much more expensive than the generic AA.

Thankfully my doctor was happy to change my prescription to Fosamax.

Hopefully he will also agree that I finish taking the Cholecalciferol tablets as well and that I just take the Vit. D tablets.