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I saw my endocronologist today only to be told that he could no longer treat me because my G.P. is in a different area to the hospital.

I was referred to him from a consultant at the hospital after a fractured pelvis which had not healed after 15 mths.

He started me on vitamin d back in January, the follow-up appointment was today.

My G.P. was not able to prescribe me the recommended Vit D supplement

My G.P. started me on levothoxarine aout 6 weeks ago.

I was beginning to feel that someone was eventually listening but now it's back to square 1.

This country has definately got a post-code lottery as to where you can get the right treatment, the consultant actually told me that if I lived in Coventry, the GP's had an arrangement with the hospital and they would have prescribed the high dose of Vit D I required.

12 Replies

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  • That is really tough. I thought the patients charter or whatever it is / was called allowed patients the choice of where they wanted to be treated even when doctors or health boards try to keep things 'in county'

    Liz

  • That's what I thought but obviously not.

    Does anyone know how I can get help from alternative hospitals. My GP only uses Warwick.

    At what stage do we get the choice as to where we are treated.?

    Sugarlugs

  • Just Googled this - pretty much what we thought.

    Liz

    nhs.uk/choiceintheNHS/Right...

  • This is really bad and stupid. I do not condone what they are doing at all. But, in the spirit of trying to get you somewhere rather better than you are, you could consider buying your own.

    For example, this product:

    Healthy Origins Vitamin D3 Gels 5,000 IU 360 capsules

    amazon.co.uk/dp/B002LC1INI

    If higher doses are needed, you can simply take more than one. So far as I am aware, there is nothing magic about prescribed D3 rather than what you can buy. Do you know how much the doctor was going to give you?

    Obviously this is entirely the wrong way for you to be managed by your doctor/endo.

    Rod

  • He was going to give me 60,000 but I'm not sure how often I would have had to take this high dose.

    Sugarlugs

  • My choice, for myself, was to take around 5000 a day for an extended period rather than very high dose.

    This is not advice. I think one argument for high dose is to ensure compliance and they don't trust us to take every day over months.

    Do ask, find out more, and think about which way to jump. :-)

    Rod

  • Do you know how low your level is? When mine was low 10.7 which is classed as insufficient I was given 50,000iu every two weeks for two months and then monthly for two months. After that I used the one mentioned Healthy Origins and 9 months later my level is up around 60 so I would say if yours is in the deficient category you could use the 5000iu ones and take one a day as Rod suggested. I was told the prescription one is slightly more potent dose for dose but not a massive amount so that would roughly equate to what the Endo would have given you.

    It's hard to overdose on Vit D so long as your calcium levels were normal when tested so that dose should be fine for a few months then get re-tested to check where your at. You shouldn't have to but your health's what's important.

    I think if your level is classed as deficient on the lab scale your doctor has to treat you. Mine was just above 10, below would have been deficient and they were refusing to prescribe it, but after arguing that it was just above, and way below the top of the insufficient bracket they gave in.

  • That's the one I take! Bonus is the capsules are only little x

  • So, let me get this straight. You were referred to an endo because your pelvis was not healing. He asked your GP to prescribe vitamin D that your GP could not prescribe. Why could your GP not prescribe? If it’s in the BNF, surely he can, and if it’s in the local area vitamin D protocol, then surely he should?

    Now you’re told by the endo that he cannot see you any more because your GP (the one who can’t help you) is outside Coventry? Surely that is rubbish?

    I am assuming that this is UHCW, which is under the same management as St Cross in Rugby. If you apply this logic, then surely it would not be possible for St Cross to refer any of their local patients with a GP in Rugby to the (allegedly) superior expertise of this major teaching hospital.

    5,000iu vitamin D will help you in the interim, but you really do need to complain about this.

    If you want to rant about this, please feel free to PM me. My experience of this hospital has been little short of appalling.

    AN

  • Bearing in mind the low cost, do what I do and buy the stuff, 15 quid for a year gives a lot of space while you do the arguing. A little more annoying though that since I first posted Amazon as as source for this, just a few months ago, it has risen significantly in price about from about 9 quid!! :-(

    Apart from the issue in hand, my personal belief based on a lot of research is that if you supplement vitamin D3, you should also supplement vitamin K2, as it is involved in how calcium is used and stored, and I fear the potential for deposition of calcium in the wrong place (ie. arteries) and it moving from where is should be (bones) is not a risk worth taking... plenty of information on-line to look at. Sadly K2 is rather more expensive than D3! :-(

    As for the problem you face, the first thing I would be doing is getting the situation documented... ask for it to be explained as what gets said face to face is not often what gets written down, and then you can begin to argue the points.

    GPs can and do prescribe a lot more than what they initially will say they can or can't prescribe, as proof of that, half of what they do prescribe is off-licence, and yes it may well not be convenient or fit in with local prescribing arrangements, but that doesn't mean it is impossible!

    As with Ansteynomad, my experience with UHCW has been, let's just say: variable and interesting!

  • Oh, if you want the 10,000iu ones, (I took them initially to get levels up) they are 22 quid plus £3 delivery here:http://www.bigvits.co.uk/product.asp?pid=260&bid=8 the same equivalent amount would be 30 quid if you doubled up on the 5000iu ones via Amazon. They do the 5000 ones too, but the delivery makes theirs more expensive.

  • *waves to Picton*

    I still think we should start some sort of action group in the area. They have discharged me now - no endocrine cause for my symptoms apparently. So why did they treat me for hypothyroidism for two years? Oh, that was a mistake!

    AN

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