Cholesterol

That's very good!  It seems the trend is growing.  My bones supplement contains many things for bone health, including K2, although I think not enough so I take an extra supplement as well.  I have a high Vitamin D level, so have discontinued all extra supplements of that, just get what's in the bones supplement and sunshine - although the sunshine won't be effective again until April where I live.

Thanks for that....if you buy your own bone supplement,  do you also take Adcal....if you buy your own, can you tell me which one, or PM me with it please...thank you..

​I insisted on my sister getting tested for Vit D, she has RA, and was so tired...her results were 17, very low....the doctor prescribed Vit D but said only for 3 months, and then no more for a year, as it dangerous.!...she became tired again, went back to the doctor who said she can only have a very low dose again (30mg or whatever the dosage? I think) Her doctor had never tested her for it previously.....

Then she needs her new vit D level checked. 

Dangerous my foot! It is only dangerous if your blood levels gets well in excess of 150 nmol/ml (60ng/ml) and probably not even then. The recommended optimal level these days is 75 - 150 nmol/nl (30-60ng/ml). And you can only know by checking it in the lab. If it is high - as Anhaga's is, due to amedical condition that is a different matter but again without checking - you don't know.

A very good article from teamvalleywellness, vitamin d test post (Google that to get a link) who work with the local health Trusts so are reliable, says

"It’s generally thought that a normal adult would need to be taking a lot of vitamin D (as much as 40,000 i.u per day over an extended number of months) in order to run into problems of vitamin D toxicity"

lodger on this forum was on high dose replacement vit D for the recommended 3 months, was apparently fine and then the symptoms came back. They checked her vit D level - and it had fallen again. She had a second high-dose boost and has remained vit D replete ever since - but taking 2,000 IU/day supplements I believe. She has posted about it just in the last couple of days but I'm not sure where. The 400 IU that AdCal and Calceo tablets supply is barely enough to keep you up if you are replete. 

So for your sister - how much did the doctor give her? Did he check what she'd reached at the end? Because if he didn't - how does he know she was absorbing it fully? Some people need injections to bypass that side of things. But even without that - if you were VERY deficicient then the empty bucket has to be filled to the top before it spills over into the blood to measure. 

Wow, did n`t know all that Eileen, and my sister certainly dosen`t....she was told by her doctor, after her 3 months was up....we`ll test you in a year`s time!, didn`t test  after taking it..... by  a couple of months being off prescribed dose was back feeling ill again!....

I despair at having to badger doctor`s to do things, and they don`t even follow up!...they make some patients feel like hypochondriacs just for asking!  I will tell my sister to go back....she has tried to change doctor`s but is always told  she`s not in their catchment area...even though we were told a few years ago, we were going to be able to go to doctor of choice....no chance!

​Does a FBC test the vitamins in the blood?...as I myself had one recently, but I know I haven`t had a seperate Vit D test if not (or B12)

Thaks again, will go on the website you have given me....

No, FBC is Full Blood Count - how many red blood cells, how many white blood cells and what sorts, how many platelets and haemoglobin level.

Vitamin tests have to be requested separately and sometimes have to go to a different lab, not every local lab does everything.

Some doctors seem to have this implicit faith that handing out a tablet will deal with all - without considerng the baseline the patients started at, whether their gut function is OK, or thinking about WHY they became deficient in the first place. One person was told to get out into the sun to improve her vit D - if you are very deficient the chances are it isn't just not been in the sun enough. If you are deficient in October - you needed more than sun!  Anyone who has an autoimmune disorder is almost certainly vit D deficient - but no-one knows if it is cause or effect so they should be checked annually at least. But you still need to check that the intervention you made worked - not wait a year.

If you struggle too much with your GP there is an NHS appointed lab in Birmingham UK which will do vit d tests privately for £28 (you'll find others online that are FAR more expensive). If 10 friends get together to do it the tests would be £23 - and that is what a GP practice would do I imagine, they'd certainly pay less for quantity.

Google "city assays vitamin d blood spot test" to get the link to their website. And they also will send their kit abroad for a slightly higher charge.

Thanks for that....when I was diagnosed with PMR 5 years ago, the rheumie (from the N&N) said to buy the lowest amount of Vit D from any supermarket....and go in garden in sun, and that will suffice!......she said that`s what she does.....so that made it ok!

?The writing was on the wall then.....I battled with them for so long and gave up, deal with doctor now, but if she has to refer me back to N&N, I will try to change....but  to who, any suggestions??

Why not put up a post asking if anyone can recommend someone around Norwich? They may have to reply to you as a private message - not sure if Drs names get through the net.

Do you mean pose the question  on this PMR site?....not familiar with much else on here, thank you...

Yes - I just meant start a thread asking if anyone knows any good rheumies at the N&N.

I've actually just asked it over on another forum where there are loads of people in the UK - someone is bound to know if there is one and then I'll let you know.

Linda, we don't have any supplements supplied to us here (Nova Scotia) so, yes, I buy all my supplements.  Our prescriptions are covered by a retiree plan my husband has.  My doctor just told me to take calcium and Vitamin D, and also suggested a liquid iron supplement as I don't like iron pills, but none of that is covered by any sort of payment plan.  

I chose the bone supplement I use by going to a local organic/health food store and consulting with the person working in the section.  It seems odd that these supplements seem better than what's available in the pharmacy, but there it is....

Linda, with regard to Vitamin D it's almost impossible to get too much because normally the body only activates what it needs.  In my case I appear to have a condition which causes too much Vitamin D to be activated, so all I can do about that is limit my intake of it.  Most people are more than fine taking up to 4000 IU per day, and even much larger doses are usually never a problem.  I mean, think about it, people go out in the sun in summertime and their skin is capable of manufacturing far more D than you'd ever get from a pill, but you never hear about overdoses from sunshine!

BTW when I asked a rheumatologist I met at a bones clinic how I could find calcium supplements without Vitamin D in them, her reply was that she didn't believe in calcium supplements.  Sigh.  

Thank you, much appreciated...

Sorry, didn`t know where you lived.... Nova Scotia how lovely.....

Thank You

" you never hear about overdoses from sunshine!"

That as much as anything because the body stops making vit D at about the equivalent of 20,000IU. It is unusual to become toxic from ingestion of vit D - but people who eat very large amounts of some offal and take high dose supplements as well can do - it has happened.

I wonder if the terror in the UK about it is a remnant of the reason food is no longer supplemented in Europe - there was a mistake at a milk production plant and small children ended up with toxic levels of vit D - that's much easier to happen than in adults of course.

Linda - this is the response I've had from someone who goes there:

"I see Dr Muktyar at the N&N. He treated me for PMR 7 years ago and currently for large vessel Vasculitis. I know several other people who with myself would recommend his care and of that rheumatology department."

He is not who I have seen, (female) ....good to get a recommendation....Thank you very much.....

There is another for the jaes Paget hospital at Gt Yarmouth - of any interest?

Yes please, James Paget, not too far away from me.....and don`t know  that even if I request to see a certain doctor at N&N they will agree, perhaps only if they have space?...I can but only try. So another name would be helpful, thank you.

 I had got in the past, dreading to go to see my rheumie, as I knew I wouldn`t get anywhere, wasnn`t allowed to ask a question!....told listen to me....and that was 14 months ago, her parting shot was....when you get to 5mg have this blood test, then I`ll see you again....can`t get below 11mg with out pain!....

"Everyone's experience is different, but after being treated for pmr & gca for over two years I requested to be transferred from N&N to James Paget hospital Gorleston.

I now see Dr McKuni, who I believe was trained by Prof Dasgupta whom I have seen privately at Southend hospital."

Someone else has said they find Muhktar good - and asking if I am in the Norwich area so maybe someone is looking for a PMR/GCA contact?

Thanks again, much appreciated!

And MaryJane says:

"Hi, I have been seeing Dr Merry, N & N for last 6 years for GCA. I have had excellent support from him and the rest of the team. When I have flare-ups ( there have been many ) I phone the helpline and always get the help / advice I need."

Thank You Eileen that is a name I`m familiar with....

​Have been to doctor this morning...the back/hip/leg pain was so bad last night....so got in quickly at surgery.  Saw a different doctor to my usual....very nice, sat down, told her of the problem, she said... (I had trousers on) you have muscle myopathy in your thighs!!....how on earth she saw that through trousers beats me.....so I replied, I`ve always had slim legs....but she was adamant....anyway, she said what the steroids can do....nothing I didn`t already know, but was pleased she is booking me an MRI scan, to rule in or out so to speak.....but, when I said what about being referred to another rheumatologist....she hesitated, more or less said it wasn`t that simple to stipulate who you want to see... So I said, well I`ll wait for the results of the MRI, and if it`s not possible to see who I want, I`ll pay....to which she said ok!!....and to keep on with the physio and to alternate, one day 10mg and one 11mg to get me down from 11 to 10mg.....not sure how I felt when I came out.....except that my muscles are probably completely useless......and with pain and fatigue, what else can I do about it.....suggestions welcome!.....Thank You again...

The usual! You take pred so any problem must be due to the pred. And it isn't true - back/hip/leg pain is NOT typical of leg muscle myopathy. And never mind an MRI - it was probably a physio appointment she should have offered!

You must know if you have muscle myopathy - are your trouser legs looser than they were before? I had myopathy when I was on Medrol - and I could see it. Strangely, the doctors never commented on it!

I can't remember - Have you been trying the dead slow approach to reduce? Or have you just stayed at 11mg?

Yes, I have been doing the dead slow approach for a long time now....even .5mg affects me.....so even stay at drop for several weeks before I start again. Got to 9.5mg and felt lots of pain, put up with it, in case it was a flare, but  then upped back to 11mg. Nothing eased, that`s why I went to physio (light massage/acupunture)   She wasn`t about to offer me a physio appointment because she knows I`m already paying, so said to carry on!.....

​No, my trousers are no looser....I have always had slim legs/arms, I`m (don`t laugh) bumblebee shaped!....rounded in the middle (extra weight 7lbs since on pred) but 5 years older as well.........

I know it shouldn`t annoy me but, why should the Rheumatologist be available for me who I choose to see, just because I can pay.....what about those who can`t! 

So what on earth makes her think that alternating 10/11 will get you down better? It's a faster reduction...

Of course you are bumble bee shaped (or apple shaped or whatever) it's pred. But if your trousers fit the same - she's talking rubbish!

I don't know - it should annoy us. A lot. It's the fighting to get a result that gets me down - even when I don't have to do it because I'm lucky now. I have been there.

Oh for the good old days when your gP referred you to a doctor by name...

Yes, the fight gets me down too....makes me feel quite low at times just trying to get answers......and I can remember when doctors used to say, who would you like to see at the hospital.......

As for her suggestion to   alternate the dose, I said that won`t help me because it`s too fast....I am doing the dead slow method which results in less flare ups!.......so got my bit in.....

​Anyway, just hope I don`t have to wait long for MRI....and can only take it from there, which I think will mean paying to see one of the rheumies, that you have posted who have been recommended....Thanks again

Messrs Mukhtyar and Merry both do private in different clinics - Merry is at the Spire Hospital, Mukhtyar at the Global Clinic. Makkuni at James Paget doesn't appear to. However, there are only 2 full time rheumies at JP - so you have a 50/50 chance of seeing him if you ask for a referral to there. There is one who does one morning a week...

Thank you Eileen, I forgot to tell you that as I was leaving the doctor`s surgery, she said to me...if I was you I would take VIt D....I said, I already do, you prescribe it for me!!

Paying private seems a good idea methinks!.....

Finding a compos mentis GP sounds like an idea too! Where do they find them?