Doctor refuses to test my vitamin D level

[MetalSculptor]

I have Hashimoto’s and have had a coronary calcium score scan putting my in the ‘moderate to high risk’ group of a coronary event. I also had a very small stroke three years ago. For these reasons I decided to take daily a 100mcg vitamin D supplement to protect against a poor outcome should I get Covid. Naturally I now want to know if my blood Vit D is optimal but my doctor refuses to test my vitamin D level. Is this reasonable?

[SlowDragon Administrator]

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[MetalSculptor in reply to SlowDragon]

That looks good. Any idea on this kit’s accuracy?

[SlowDragon Administrator in reply to MetalSculptor]

It’s NHS test

Thousands of members on here use this test kit

Currently taking a bit longer to get results emailed to you than normal

[SeasideSusie Remembering in reply to MetalSculptor]

MetalSculptor

I have been using this NHS test for a few years since discovering my Vit D deficiency. It is an NHS lab at City Hospital, Birmingham. There is no reason to think that it is nothing but as accurate as any Vit D test done by any other NHS lab.

There is a short video in that link (scroll down to "Taking a Sample") and if you are still unsure why not contact them?

[MetalSculptor in reply to SeasideSusie]

Thanks SeasideSusie. I’ll go for it !

[fuchsia-pink]

No it's not reasonable

I got full tests from my (fab, new) GP just over a year ago - but at the time she said that vit D is the hardest to get done - the GP has to complete a set of extra questions, which she basically fudged to get me the test done ... then 6 months later, the lab point blank refused to do another vit D test, this time requested by a senior endo consultant. He was a bit bemused when I pointed out that he (quite significantly) out-ranked the lab technician - but still couldn't get the test done ...That's the NHS for you I guess. Far too many people with their own little fiefdoms and never mind the actual patient.

[MetalSculptor in reply to fuchsia-pink]

The crazy thing is that I spoke to my GP about getting the test and gave my reasoning and she said okay. So, I had blood drawn and an hour later got a call from the doc to say she couldn’t send it to the lab because they wouldn’t accept it. Clearly she was unable to justify it on the lab questionnaire. Given that it is fairly evident now that Vit D deficiency is linked to poor COVID-19 outcomes (I live in Scotland where sunshine can be elusive ) it makes sense to me that everyone should know their level and supplement accordingly.

[SlowDragon Administrator in reply to MetalSculptor]

When supplementing vitamin D it’s important to retest twice year

[penny in reply to MetalSculptor]

The official attitude to vitamin D is scandalous. I agree, you’d have thought that given vitamin D’s role in regulating the immune system and Covid-19 outcomes it would be of high priority. Good luck.

[MetalSculptor in reply to penny]

I totally agree. If Vitamin D could generate huge revenues for big pharma then I suspect the entire ‘system’ would be pushing it down our throats ! That’s just business of course

[HungryHungryHypo in reply to MetalSculptor]

I think you may have hit the nail on the head here, MetalSculptor.

When/if they find a (expensive!) way to cure autoimmune diseases, just watch how they’ll push for hashimoto’s etc to be treated!

[HungryHungryHypo in reply to penny]

I agree, Penny. The NHS website tells you most people are deficient and you should supplement with 400 IU but won’t test you despite the fact that most people need far more than that to reach a good level.

I’m not criticising the dedication of the staff here, nor their medical expertise, just the way the NHS is set up. Amazing in an emergency, not so much for maintenance of good health (to avoid emergencies later down the line). As thyroid patients, we know that all too well.

[Cooper27]

My partner was tested for vitamin D deficiency, found to be severely deficient and was later found to have severe osteoporosis. Six months later, he asked if his levels should be checked again to make sure he had sufficient levels for bone health and the doctor said she thought they should, but that she wouldn't be allowed to test them.

Vitamin D testing is apparently expensive, and if your GP requests a test, they get interrogated to justify why. If they request more than once a year (even for someone with a known deficiency) they get refused.

It's a pretty shocking stance to be fair. And I doubt it works out cheaper in the long term...

[MetalSculptor in reply to Cooper27]

Shocking indeed. It’s myopic at best and a massive false economy. Until health services focus on identifying the root causes of chronic illness and adequate funding is ring fenced for this purpose then it will continue its ‘band aid’ mentality to health care. More worrying is that root cause is already quite evident for some major chronic diseases and there is clear evidence that some can be reversed with non-pharmaceutical interventions but still we are mostly treating symptoms of disease and largely ignoring the elephant in the room.

[HungryHungryHypo in reply to MetalSculptor]

Another nail hit on the head here! That’s why I prefer being treated in France if I can. The doctors are not better there, they’re the same, some good and some bad. But they tend to be more proactive to avoid bigger problems later down the line.

[serenfach]

I had this recently from the labs -

Vitamin D testing is restricted and repeat testing is only indicated in certain patients undergoing specific osteoporosis treatments. Repeat testing is not required for patients on routine supplementation of vitamin D. This complies with 2015 guidance from RCPath (National minimum retesting intervals in pathology. A final report detailing consensus recommendations for minimum retesting intervals for use in pathology) and local HB guidelines (Vitamin D Deficiency: Diagnosis and Management in Children and Adults).

Daft when studies show most people are lacking in Vit D. I was tested very low and the GP told me to go out more. I told her I farm, so am out all day. She then said to wear less. I told her I have vitiligo. She still did not test. I bought my own.

[MetalSculptor in reply to serenfach]

Wonderful! My doc told me the day before yesterday to roll my sleeves up and get outside. It was like she was in autopilot - just regurgitating the same mantra she gives every patient. I mentioned that our latitude does not allow us to produce vitamin D at this time of year because the sun is just too low in the sky until May. I think the current advice on vitamin D dosing is only protecting against rickets - we should be protecting our immune systems with much, much higher doses. I’m taking 4,000 iu daily at the moment.

[Cooper27 in reply to MetalSculptor]

I got this too! I had a level of 25.3, but the doctor said they don't treat unless you're below 25, so the advice was to get outside for some sun. It was November.

[Utterlyfedup in reply to MetalSculptor]

Hi I'm in Tayside. After a hospital visit I was told vit D was deficient at 19. Advised 800 but went for 4000 instead. 6 months later requested blood test. Practice nurse took blood but result came back "cannot test as with 340 days". I queried this and was told that it is too expensive as it goes to a lab in Glasgow not Tayside. All about the pennies!!

[Cooper27 in reply to Utterlyfedup]

We're in Glasgow and still were told it's too expensive...

[MetalSculptor]

You have to wonder - what is the real cost to the NHS (and beyond) of Vitamin D deficiency. Here’s two likely scenarios:-

VitD deficient->COVID->ICU->Huge costs

VitD replete->COVID->Good outcome->minimal costs

[penny]

You couldn’t make it up it is so ludicrous. We can get test for, what..£29? Is that too expensive? MetalSculptor is right, the benefits of vitamin D are many yet are totally ignored by the medical profession.

I researched the link between autoimmune conditions and vitamin D and came across a wonderful professor who has been treating MS, etc. for 20 years with vitamin D yet hardly anyone in this country has heard of him. I enquired for a friend who has PPMS but it seems my friend had left it too late for treatment as he was already paralysed; could this treatment have saved his mobility if his consultants had done the research I had done? Who knows but it is unforgivable.

[MetalSculptor in reply to penny]

That sounds very interesting. What was the name of the professor? Probably just one of myriad brilliant doctors and scientists whose life's work has dramatically improved the health of their own patients at minimal cost (saving health/insurance providers a fortune).But yet again, the work is not recognised because it doesn't get BIG research funding for clinical trials because it's not likely to reap great financial rewards for the businesses that fund the trials. Is it any wonder people get angry with the system.