Bone profile test for vitamin d deficiency - Thyroid UK

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Bone profile test for vitamin d deficiency

CarpaBob profile image
28 Replies

I have been taking prescribed vitamin d for the last six weeks and my previous gp advised a test at 8 weeks to check levels. A duty doctor at my new gp surgery states they no longer do vitamin d tests but do a bone profile instead. Has anyone else had this for vit d check up? I had a bone profile done with my original vit d test, all were in range whilst the vit d was 12.

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CarpaBob profile image
CarpaBob
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28 Replies
bluebug profile image
bluebug

Yes - that was my NHS check up.

My calcium and alkaline phosphatase were within range but my vitamin D was still below range to my (new) GP's shock. However I was at the point I was breaking small bones and had actually broken a toe before I was found to be vitamin D deficient.

CarpaBob profile image
CarpaBob in reply to bluebug

So am I right in assuming that if the bone profile numbers increase then they will assume my vit d is increasing? Seems a strange way to tell if the supplements are working!

greygoose profile image
greygoose in reply to CarpaBob

Like testing a pituitary hormone to see if your thyroid is working... That's medical knowledge for you.

bluebug profile image
bluebug in reply to CarpaBob

Nope.

They are checking:

1. You are absorbing the vitamin D

2. You don't have any other conditions

I was told at my old surgery the lab would refuse to do the test if they tried to do it earlier than 6 months in adults. Children they have to check at 2-3 months because they are growing. The nurse who told me this seemed p*ssed off with the treatment protocol for the area, so the bone profile test request may be to get around this restriction.

When I said at my new surgery I needed a vitamin D test, the doctor saw that I had been severely deficient then wrote a form for a bone profile test.

As I have issues with iron levels I have private tests if I'm very tired as I've fed up of fighting with GPs. (Now you know why I know a lot about iron.) Anyway when I was anaemic last year and needed retesting after taking lots of iron supplements my GP offered to do a haemoglobin, ferritin and vitamin D test. There was no offer of a bone profile test.

CarpaBob profile image
CarpaBob in reply to bluebug

Can they really know that I am absorbing the vit d, or enough, if they don't test the vit d. Having looked up the guidelines for my area they actually state that a calcium test should be done after 1 month of supplements in case of hyperparathyroidism. This hasn't been offered either. My ferritin, b12 and folate are also low and I am still battling with the GPS on these issues too! I am so sick of being ill and just feel like it's such an uphill battle with the doc's.

bluebug profile image
bluebug in reply to CarpaBob

Nope they can't . They won't do the test because it is too expensive.

Guidelines are just guidelines which GPs can ignore. They only won't ignore guidelines or advice from consultants if they risk being sued or disciplinary action.

The NHS is poor at treating chronic conditions. Many of my friends and family plus myself have found you will only get treated when you are acute. Therefore unless you are wiling to suffer and fight with GPs, you may as well self-treat and self-test. If you can't afford it you are stuffed.

Also be aware unless your folate, ferritin and B12 are below the lab ranges they won't treat you, so you are wasting your time fighting.

CarpaBob profile image
CarpaBob in reply to bluebug

Unfortunately I can't self treat as I can't work and can't afford it so I am stuffed at present, however I refuse to just accept it and will keep fighting. as far as the guidelines are concerned yes they can ignore them and I have had a gp tell me they are " just guidelines" however I was a midwife and am fully aware of the accountability regarding ignoring guidelines, gps don't seem to realise they are still accountable from a neglect point of view. Its one of the reasons I have recently written to my gp regarding my conditions and treatment so it is on my record now.

Lilian15 profile image
Lilian15 in reply to bluebug

Last test my ferritin was 20 in a range of 20 - X and was told as I was within range nothing need be done.

bluebug profile image
bluebug in reply to Lilian15

Doctors only have to treat you if you are below the range. If you are within the range they don't have to treat you.

A minority will but most won't and there is nothing you can do about it as they are not breaching NHS England guidelines. You have to go below the reference range and only maybe then will you get treated.

That means unfortunately if you find yourself breathless, dizzy and fainting you need to go to A&E and get treated.

Unfortunately if you can't help yourself then no one can help you. It's not even the NHS postcode lottery at work it's just GPs refusing to spend their budget.

000ggg profile image
000ggg

Sounds crazy to me, you can't know what the vit d level is unless you test it, testing the other levels is a good idea too.

radd profile image
radd

sayitas,

gg means the prescription of hormone replacement meds is dictated by the TSH level (secreted by the pituitary in response to low thyroid hormone).

If TSH is too low, you have too much thyroid hormone (& they cut your dose) or if TSH is too high, thyroid hormones are low (& they increase your dose).

As thyroid hormone is influenced by so many different mechanisms in the body and TSH is only a small part of the picture, it is narrow minded and ignorant to only consider the TSH level as leaves to much unknown, and the little known open to misinterpretation.

greygoose profile image
greygoose in reply to radd

Thank you Radd. I couldn't have put it better myself! lol

sayitas, you do know TSH is a pituitary hormone, don't you.

mistydog profile image
mistydog

Can't afford not to. If you get well then you can work.

q_62 profile image
q_62

My vit D is 16 but because liver hormones severely raised retest in 3 months after supplementation and it is summer. Prior to xmas Levo doubled I thought I had bad sinuses and did not realise my lack of interest low mood was thyroid and D deficiency . Luckily iron good. It is hard to get your symptoms noticed at the GP with one appointment one issue. I am concerned as I am at least 3 inches shorter and arthritis flaring up too. I have another month before retest.

MichelleBerko profile image
MichelleBerko in reply to q_62

Vit D should be 90! For every 1000iU you will raise by 10. So you need to be taking 7 X 1000iU capsules a day!! Sounds a lot but it's not unusual in North Amerca or N Europe.

Get a spray or break the capsules in your mouth and absorb, so it's easier on your tummy. It's a fishy taste but bearable

Rebec profile image
Rebec

My son, who has to read a lot about MS as part of his job, takes huge quantities of vit D (I think it's D3) to protect himself against this terrible disease.

Jefner profile image
Jefner

It actually cost £28 hun. Had a home test kit done other week

CarpaBob profile image
CarpaBob

Thank you all for your replies, unfortunately I really am not able to self treat my husband works but we are stuck in very expensive private rented accommodation leaving us with not enough money to even eat properly let alone pay for tests etc. I am going to speak to the gp again and find out why their surgery doesn't do vit d tests.

It's only something like 28 quid for test - so get your own done. Details on TUK main site.

CarpaBob profile image
CarpaBob

If I had 28 quid I would

bluebug profile image
bluebug

My bone profile had no parathyroid hormone level in it.

They only run the test if the results are off.

LAHs profile image
LAHs

Frankly, I think the "duty doctor" had a brain fart! I would not give his opinion a moments consideration!

Bone density scans cost thousand of dollars, vit D tests cost about $30. There is no point in measuring the density of your bones if you have high Vit D (unless there is other evidence to suspect bone loss). If you have very low Vit D and you have had it for a very long time then it is reasonable to look into a bone scan.

000ggg profile image
000ggg in reply to LAHs

I had my first scan when I started going in and out of meno- a doctor was sure I was in full menopause. But I came out of it 3 weeks later, lol. The scan was normal but only 5 years later and only 3 years after I did go into early meno I had osteoporosis which I didn't find out about until this past January. I think something else is going on with me because 3 years for osteoporosis to develop is very fast. Especially since I was on hrt for 1.5 years of that time.

000ggg profile image
000ggg

I thought she meant they weren't testing vitamin D. It's a good thing this panel imo, in the us, no one will test that unless you have high calcium or other things going on in your blood work. Even then I had to have an argument with two doctors to get pth tested.

CarpaBob profile image
CarpaBob in reply to 000ggg

Yes that is what I meant, they are not testing the vit d this time. Thing is I had a bone profile done at the same time as the vit d test that came back as 12, now the profile was fine and all were mid range so I can't see how they will know if the vitamin d supplements I am taking are working if they don't test my vit d level again.

000ggg profile image
000ggg in reply to CarpaBob

Ok so I was correct in my first assumption. Yeah, that is just dumb.. they need to monitor vit d as well obviously, not just the other levels. A bone panel should always have vitamin d.

Daisy77 profile image
Daisy77

What happens if you get too much vitamin d?

CarpaBob profile image
CarpaBob in reply to Daisy77

From Web md. Too much vitamin D can cause an abnormally high blood calcium level, which could result in nausea, constipation, confusion, abnormal heart rhythm, and even kidney stones. It's nearly impossible to get too much vitamin D from sunlight or from foods (unless you take way too much cod liver oil).

😀

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