Recently been back to see my consultant.everything good except pain -oh what pain-in legs.although I've been told I've recently developed bursitus I've had terrible ache and pain for months.my consultant said it was out of his remit so referred me back to gp who did a thorough blood testing.altho my creatin levels and ggt were slightly higher than normal everything else was good except I was slightly deficient in vit d and also the one that makes my blood clot(been having bleeding gums for over a year) she told me to buy some vit d and k tablets over the counter but can't find any.ive bought multi bits with them in and surprised how the pain has eased.however don't need all of the bits and I'm aware too much of others can cause problems.anyone bought vit d and k?and where from please
Any advice on bit d and k?: Recently been... - PBC Foundation
Any advice on bit d and k?
I ended up doing the same as you and buying multi vitamins and the pains in my legs all but disappeared. Lik eyourself I was concerned about taking too much of other vitamins. I am now on cod liver oil capsules which are rich in Vitamin D and take these daily. For the first time I have very little pain in my legs (just what I would expect for my age) and now do not take pain killers. I have bursitis in both thighs and get a steroid injection into both when the pain gets too bad. An injection into my left thigh lasts for a year at least but need more regular injections into my right thigh.
Thank you June.do you have any blood clotting problems may I ask?ive experienced bleeding gums for some time now but my dentist doesn't find a problem.my bloods show a slight deficient in the clotting which I've read links to vitamin k.i do eat green veg etc but finding vit k tablets seems impossible
On my last visit to gastro I told her about the terrible pains and fatigue i had , she was convinced it was not PBC related so she referred me to rheumatology, who diagnosed fibromyalgia. He also tested my vit d levels which were very low so I get vit D3 tablets on prescription. , I would ask your GP if you can't find a single supplement but any healthfood store like Holland and Barrett would have them. I don't know about vit K but Holland & Barrett stock most things.
From what I have read on the 'Thyroid' site (another site on 'Health Unlocked') some of their advisors - who always seem to be online and always step in with advice in situations like this - are amazingly knowledgeable about vitamins and minerals.
First, from my background in Biology, my extensive reading of mainstream scientific guides to nutrients, and from what is said on the thyroid site, I don't think your GP should be telling you to go and buy over-the-counter supplements without a full range of proper vit and min testing. In particular, I think you need to see a nutritionist or specialist gastrowho knows exactly what they are talking about. There is an immense amount of complicated biological feedback that can take place in relation to vits and mins, depending on which ones are involved; and taking more of one - without knowing exactly what is going on - can cause excess of others, or a depletion of them.
Secondly, you need to be checked for other conditions, particularly the other types of autoimmune conditions that PBC sufferers are often at risk of developing (when my GP was told about my risk of PBC, he tested me for all other possible autoimmune condtions, and my thryroid etc are checked whenever my lfts are checked). Many of these - or just other illnesses - can cause various vit and min deficiencies: but, it is all a complicated balancing act, and it is no good just downing multivitamins. For example, some vits are hard to absorb (particularly if you have certain conditions) and taking other, specific, nutrients at the same time as the required vit/min can help absorption, while other nutrients should not be taken at the same time.
Finally, a lot of these supplements you could be having on prescription ... once they do know exactly what is going on - although be prepared for a battle, especially if it's thyroid related. The UK has an incredibly 'wide' 'NORMAL' range - where we are deemed to be okay - when other countries would be taking action.
I hope you get sorted and feel better soon, but go back and ask for more tests, failing which, see a private (bona fide, mainstream, not wacky) nutritionist.
Thank you .i know it's not thyroid related as I only have half a thyroid left(had part of it removed 10 year ago due to beignine lump on it) I have to have a full thyroid profile done at least once a year and the bit I have is working perfectly.yes I'm aware that too much of one vit causes problems.my gp did a full bit spec on me and my b groups iron etc are fine it's just slightly low d and blood clotting one .i gather it was too little to cause her great concern hence why she said buy over the counter.its only when I read up on it and thought could this be causing me such pain.maybe it's coincidental but like June my aches and pains are now more in keeping for a56 active woman.i wondered if anyone knew of where to get vit d and k so I wasn't taking a surfeit of others.thank you I will try holland and Barrett next time I'm in town
I am a bit late joining your discussion and you have had loads of good advice however I just had a quick look on the Amazon site and there are many alternatives which you might like to look at if you don't find anything in Holland and Barratt.
best wishes
Thank you
Okay, apologies if I was 'teaching you to suck eggs'! Which goes for the following, too ... but:
Have you had any female hormone checks? I'm 59 and don't know if I'm post-menopause, as I have a mirena coil: so no periods for 4 years, but I still had cycles (and high oestrogen 2 years later) at 54 when I had the coil fitted. The reason for the coil was partly mild endometriosis and worsening periods (worse with perimenopause) but mainly because of increasingly awful joint pains: mainly hips, lower back and legs. My GP thought the hips were definitely bursitis, but it followed a cyclical pattern, and the Gynae I saw felt it was to do with my high oestrogen in relation to low progesterone, and advised the mirena coil - one of the best things I've ever done: all the pains vanished.
I do hope you get some relief, I was able to go back to hillwalking and climbing, which I'd almost given up!
No need for apoligies
Hi I've just seen your post and I suffer really agonising leg pain relating to PBC. My consultant recommended that I was prescribed Citralopram. It made a huge difference. I still get leg pain but not nearly as severely. Like you I had my thyroid removed, that's when they picked up on the PBC. After my thyroid operation I was prescribed vitamin D and calcium tablets as I was suffering from hypocalcemia therefore if your having trouble getting vitamin D on its own your doctor should be prescribing it.
Oh thanks not heard of that one before.im reluctant to use calcium cos I have had heel spurs before which can be caused by a calcium build up
Sorry maybe I did make it clear but they were separate tablets, one vitamin D the other calcium x
Should say didn't lol
It isn't recommended to take calcium directly. There is a lot of research showing that it is stockpiled in the body, in all the wrong places. Vitamin K regulates calcium in the body, and makes sure it goes in the right places, like bones. Koncentrated K at k-vitamins.com has a capsule with three types of K. helps with bones, heart, cancer and per the FDA, no upper limit. No known toxicity. Small doses are now even recommended for folks taking warfarin, as it helps stabilize the impact of the warfarin.
You won't need the calcium but I needed the vitamin D to make the calcium stick. So if I could be prescribed vitamin D on its own there should be no reason why your doctor can't prescibe it for you. Also ask about the Citralopram. It's used as an antidepressant but this type of drug has been successful in the treatment of fatigue and bone pain which is why I take it. Hope this helps x
Thanks.will def look into this
Normally Vit D can be bought with calcium as the 2 tend to work hand in hand. Just after I was diagnosed with PBC my GP wanted me to take Vit D as he said my readings were showing deficiency. I couldn't find an y either and on asking was informed you can buy over-the-counter from the pharmacist (that were apparently available on prescription too and would have worked out cheaper for someone paying in the UK) and that they were with calcium.
I declined buying due to the costing at the time from the pharmacy and when I saw the hospital consultant he retook a Vit D at the time and on his letter to me he said my Vit D 'was a bit low but not bad' and didn't recommend taking any supplements at the time though if I wanted to.... I didn't get a figure reading so I rang his secretary and she sent it out. My Vit D was on the line so to me no panic. I did utilise the sun that year (and subsequent years since) and I've been ok.
I have in the past bought the odd item from this UK company - Nature's Best - but haven't in a while. (I did once try the milk thistle but then due to legislation in the UK changing, the mgs went down drastically, the price went up and the amount of capsules lessened so I stopped. I did buy milk thistle for awhile to experiment myself. I was left a bit sceptical so haven't bothered now for about 18mths and can't say it has affected my LFTs as they were pretty brilliant in July this yr with just taking urso.)
I've posted the website if you want to have a look. I also noticed they do Vit K too. It might be helpful in giving you some idea of what to perhaps decide to buy but if you enquire at the pharmacy and get some costings, if you are in the UK then you might find a doctor's prescription will work out cheaper as I thought it would several yrs ago now. (I've never taken Vit D tablets nor Vit K. I've only had a one a day of iron for 3mths nearly 12mths ago now due to a bit of a lower ferritin count but that wasn't due to PBC, another unconnected minor problem.)
naturesbest.co.uk/vitamin-d...
PS Vit K is what we need for the blood clotting so that probably explains why your blood isn't clotting as adequately as it could be.
Many leg cramps/pain is related to not enough magnesium. Magnesium malate is recommended and can be found online.
Hi Cazz,
About 10 years ago when I started menopause I also developed hypothyroidism. I had terrible leg pain. It felt like shin splints, especially when I would go up and down the stairs. My doctor tested me for vitamin D. The results came back extremely low and she said that my body was not producing much vitamin D, if at all. I started taking 2000IU daily. My legs started to feel much better.
Fast forward to last May when I was diagnosed with PBC, my gastro put me on the URSO as well as Vitamin D, 2000IU daily (already taking); Vitamin K, 0.5ml weekly (this is a liquid that normally would be injectable, but I take orally); Calcium, 1000mg daily; Vitamin E, 400IU daily; Vitamin A, 10,000IU daily; & a mulit-vitamin. These are all prescribed. The liquid Vitamin K can only be a prescription. The gastro said that fat soluble vitamins tend to deficient in PBC patients.
Please know that I am NOT saying that everyone should get on the band wagon and take these vitamins, but I do think it should be a conversation that everyone with PBC should have with their doctor. An overdose of these vitamins can be harmful, but if your body is not allowing them to be absorbed then that can be very harmful too.
On a side note, I was bruising horrible prior to the vitamin K and now I rarely bruise.
I hope this helps!
Just having a moan
Hooray - a very happy day :)
Scared & Confused
tired and a bit fed up
Acupuncture and Naturopathy
