Vitamin D Deficiency: 4 years ago my... - British Liver Trust

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Vitamin D Deficiency

Lantana100 profile image
17 Replies

4 years ago my husband was admitted urgently to A&E following a limb fracture and was subsequently diagnosed with decompensated cirrhosis. Thanks to the dedication of his hospital team he made a marvellous recovery and is now compensated and leading a normal life with no varices, ascites or other complications. His blood results are essentially normal apart from a low level of 25-OH Vitamin D. He eats well and gets plenty of sunshine. Should we use tablets to try and increase his Vitamin D levels? He has regular liver US scans and blood tests but we have no direct contact with his consultant any more, although we do get interpretation of results is by letter. Don’t really have a problem with that to be honest as the consultants are extremely busy with poor folks who are in a much worse place medically than us. But some advice re Vitamin D supplementation would be useful. Anyone out there in the same boat?

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17 Replies
AyrshireK profile image
AyrshireK

Has your husband had a DEXA scan which would assess his bone density? GP should be able to order one, it's common for folks with cirrhosis to have mineral deficiencies which can lead to osteoporosis/osteopaenia and in light of your hubby already having a fracture it might be worth pursuing a DEXA scan and then perhaps some calcium and vitamin D supplements.

My hubby has cirrhosis, osteopaenia and is prescribed Adcal D3.

Katie

Lantana100 profile image
Lantana100 in reply to AyrshireK

Ah thanks so much Katie, forgot to mention he had a DEXA scan last December and it was absolutely fine. I don’t think his fracture was due to any bone weakness although you do of course make a good point. He’s a big man, and he tripped and fell heavily on concrete resulting in a very bad humeral fracture. That healed beautifully. All in all he is a lucky man!! I’ll have a think about getting some Vitamin D supplements. If it’s prescribed for your husband as part of his AdCal D3 prescription the experts obviously think it’s a good thing to supplement. Thank you so much.

theoldboiler profile image
theoldboiler

Doctors almost always recommend D supplements for those living in the Northern hemisphere. I take them every winter to help prevent SAD

Ewife profile image
Ewife

Hi! My husband was prescribed Vit D from diagnosis.......came with all the other meds. I'm sure your gp or consultant can easily prescribe some😊

Lantana100 profile image
Lantana100

Thanks very much for your reply. I’m reassured to hear this as I didn’t want to give him anything that might be bad for his liver.

NorbertGrubbins profile image
NorbertGrubbins

Hi - am adding to the chorus of support - I too have osteopenia (with cirrhosis) and take a high dose vitamin d supplement although on last showing it wasn’t making much of a difference - next blood tests are in December so we will see

If getting a prescription is difficult (I more or less have to be dying to get the GP’s attention) high-dose supplements can be bought over the counter or online

Good luck!

Lantana100 profile image
Lantana100 in reply to NorbertGrubbins

Thank you very much. And yes, GP out of the question here too so will buy some OTC Vit D for him.

jbrking profile image
jbrking

Mose people need vitamin d supplement as it’s one our bodies don’t store. Mine was just 7 a few years ago. Advised to take a high strength one so I took 8,000iu for a year and when tested it was nearly 100. Told to take a lower dose to maintain so I take 4,000iu a day. Especially now we’re going into autumn/winter months.

Lantana100 profile image
Lantana100 in reply to jbrking

Well good to know it actually does make a difference to the blood levels. Thank you. All these replies are so useful.

PutneyGirl profile image
PutneyGirl

My endocrinologist/physician recommends 20,000 IU weekly to increase my Vit D from 58 to >100. Then a maintenance dose. This is now on hold because my ALP has wanged up to 200 again and final decision is pending an isotope bone scan to rule out Pagets disease.

I gave up alcohol three months ago and my fibroscan was perfect. My cholesterol was very high, now normalised through diet and weight loss. I have established osteoporosis (6 breaks in 5 years including two vertebral) and take teriparatide which is the likely cause of the raised ALP.

One thing seems to impact another and it's important to get it right and meds correctly titrated. To be entirely fair, I am stunned at what the NHS has thrown at this although I've elected for some of the tests privately, they were all available on the NHS and quickly too.

Lantana100 profile image
Lantana100 in reply to PutneyGirl

Thank you so much. My husband’s level was 41 (normal quoted range was 50 - 150) so a bit lower than yours. I might start with jbrking’s dose - or maybe a bit lower - daily and see how the results look following his next blood test. This forum has such amazing people. Thank you all.

Tiger800xrt profile image
Tiger800xrt

Hi there,

Interesting story which quite closely mirrors mine. In 2019 I had a very low speed motorbike accident that should have resulted in no injuries. Unfortunately I sustained a quite severe fracture to my right humerus which fortunately healed successfully without surgery. Fast forward to October 2021 and I was hospitalised for 4 days after being referred by my GP due excessive fatigue, oedema and numerous other symptoms.

Eventual diagnosis was cirrhosis due to viral hepatitis. Through a series of tests it was determined that I had a low phosphate count (Hypophostemia) and one of the causes of this is Vit D deficiency. So I was put on an initial course of high dose Vit D with a recommendation of daily supplementation to maintain the level.

Now there is a huge amount of information and mis-information about Vit D. The NHS recommendation is 400iu during the winter months. For the vast majority of population of the UK this is too low. People of different ethnic backgrounds may also need larger doses as may do those with autoimmune conditions. Also your weight has a bearing on the amount of Vit. D that you need.

When people talk about Vit. D levels they are generally referring to 25-hydroxyvitamin D3 which is produced in the liver when it processes the vitamin d that your body absorbs through sunlight, your food and supplementation. Levels between 50.1 and 220 nmol/L are considered adequate.

Since Vit. D deficiency can be caused by any number of factors such as medication, obesity, kidney and liver disease as well as other conditions, the decision to supplement and to what level should always be discussed with your health care professional.

Lantana100 profile image
Lantana100 in reply to Tiger800xrt

Thank you. Agree with all you say. Pretty sure the liver cirrhosis is the cause of my husband’s VIT D deficiency so going to give supplementation a go as there is no way we can get to speak with his consultant and it’s pretty much the same situation with our GP. Apart from low creatinine - also due to his liver - his other blood results are good, including albumin and platelets which are now at normal levels

Kristian profile image
Kristian

Hi Lantana, low Vit D is pretty common in the UK, even for those that do manage to get a fair bit of what sun we do get, lol. Supplementation is a pretty good idea, especially with his cirrhosis diagnosis. Vit D is fat soluble if I remember rightly, and as a cirrhosed liver has difficulty processing fats it can lead to further difficulty in getting sufficient Vit. D.

Best thing to do though is get an appointment with you gp to discuss. Whilst over the counter stuff may be ok, he may need a bit more than they can provide and it may be a level that needs a prescription. Also the dosing may vary too as well as how long he needs to take it.

Hope thats helpful.

Lantana100 profile image
Lantana100 in reply to Kristian

Thank you. I’ll see what we can do re speaking to a health professional. It’s obviously the preferred route but as I said, not easy these days.

T-A-T profile image
T-A-T

Hi, I had Vit D deficiency a few years ago and had to have a high dose VitD from my drs (couldn't get the strong ones in a shop), the I was to take a VitD supplement after my 2 week course of strong one's, I had bloods done in August this year and again my Vit D had dropped, so I am now taking a Vit D supplement even in the summer months, I actually notice the improvement when I take them too, it's just working out what strength you need, if you Google Vit D it explains a bit more about it, or speak to your gp if you can get an appointment, can never get an appointment at our surgery in the UK, and when you have no choice and need a Dr, they put you on a 2 week waiting list, if its urgent, they just send us to A&E which is not always needed,

BritishLiverTrust8 profile image
BritishLiverTrust8ModeratorBritish Liver Trust

Dear Lantana100

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

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