GP refuses to test my Vitamin D: I am due for my... - Thyroid UK

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GP refuses to test my Vitamin D

Charltonjl
Charltonjl

I am due for my 8 week thyroid check in a couple of weeks but my GP won't test my Vit D despite asking her as my last test result was 39nmol/L. At the time of my last (private) test, I was already taking 1000iu of Vit D and have since bought my own supplements (spray + K2) to up the range (as recommended on here!). Since my last test though I've developed carpal and cubital tunnel syndrome and feel awful (much worse than before) so feel my meds needs increasing too. Just wondering if it's normal for docs here not to test Vit D levels? Thanks

43 Replies
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GP won't test my Vit D despite asking her as my last test result was 39nmol/L

That's a very strange reason. Did she elaborate? When was your last test? They don't like to test too often! Costs money! But, as you've been taking supplements, she ought to test to make sure it hasn't gone too high.

Are you also taking magnesium? The two work together.

Charltonjl
Charltonjl in reply to greygoose

She said it wasn't too low even though I said I was already taking Vit D supplements prior to my last test (which was about 7 weeks ago). My magnesium was slightly high so I'm not taking that at the moment other than with my breastfeeding supplements. I'm getting a thyroid test in 2 weeks anyway but she wouldn't add Vit D even though I asked. Actually said 'no' when I asked :(

greygoose
greygoose in reply to Charltonjl

I think they will only test vit D once a year, maximum.

Don't go by magnesium blood tests. You have have over-range results but still be deficient due to the way the body handles magnesium. And taking vit D will deplete your magnesium, so you really need to take the too together. Excess magnesium will be excreted.

Breast-feeding supplements? I hear alarm bells ringing! What's in them?

Charltonjl
Charltonjl in reply to greygoose

My GP has never tested my Vit D though. I did it privately. I take the Pregnacare Breastfeeding vitamins - that has 150mg of Magnesium in it. Is that enough? The supplement contain lots of other vitamins and minerals. I can take a photo but not sure how to attach it? X

greygoose
greygoose in reply to Charltonjl

The important thing is: does it contain iron, iodine, copper or calcium?

150 mg magnesium is nothing. It's recommended to take about 350-450 mg. So, that won't be helping much.

In defense of your GP (I can't believe I'm saying this!) they know nothing about nutrients because they don't learn about them in med school. They know no more about them than the average Joe. So, no point in asking about them. You might just as well go out in the street and ask the first passer-by. The response will be just as useful - or, who knows, more useful! But, for a GP, if it's in-range, it has to be perfect!

Charltonjl
Charltonjl in reply to greygoose

Thank you! I already take iron supplements - since my last test results. My Pregnacare contains 700mg of Calcium, 150ug of Iodone and 1000ug of Copper. Is this OK? X

greygoose
greygoose in reply to Charltonjl

Not really, no. You should not take any of those without testing first to see if you need them. Excess can be dangerous.

Calcium: it's very rare to be deficient in calcium in the western world, and calcium supplements are difficult to absorb. They tend to build up in the arteries and soft tissues, causing problems - can even cause heart attacks.

Iodine: Excess iodine is anti-thyroid, and you will already be getting a certain amount from your thyroid hormone replacement, as iodine is recycled in the body, plus what you get from your food. The chances of you need more are very slim. And, excess iodine can cause a whole lot of other problems, including thyroid cancer.

Copper: most hypos are high in copper, low in zinc. So, adding more copper is not a good idea. Excess copper is not pleasant. It builds up.

Multi-vits are never, ever a good idea, no matter what they say they're for - that's just a trick to get you to buy them - they nearly all have the same inappropriate ingredients. Far, far better to get your nutrients tested, and just take what you need. And, even if excess doesn't do you any harm, it won't do you any good, so you'd just be throwing your money away with a multi, for stuff you don't need and probably can't absorb, anyway.

Did you know that iron should be taken two hours away from everything and four hours away from levo?

Charltonjl
Charltonjl in reply to greygoose

Oh wow, I had no idea. Thank you. So is it better I stop and just get a magnesium supplement? My GP told me to stop my Pregnacare but only because my magnesium is a bit high (in order to reduce my magnesium intake). Not for any other reason and definitely not to add magnesium to my diet. It's all so confusing and the GP is contradicting this so I'm a bit lost. Can I get a full nutrient test somewhere? Thank you :)))

greygoose
greygoose in reply to Charltonjl

Well, the thing is, doctors know nothing about nutrition. They pretend to, but they really don't because they didn't do it in med school. They don't know anymore than you or me. Probably less because they don't have the interest in researching it. And, he obviously doesn't know that there's no point in testing magnesium. And, he doesn't know that excess is excreted. And, he doesn't know that taking vit d depletes magnesium. There's such a lot he doesn't know, but he thinks he does. So, I would suggest you do your own research before making up your mind. :)

purple64
purple64 in reply to greygoose

I was told that they were glad the hospital tested it because it’s expensive

greygoose
greygoose in reply to purple64

When I asked my GP here in France, he said no, just take vit D anyway, because everyone is deficient! But, his idea of taking vit D was a small phial - can't remember how much it contained - once every two months! lol And, when I went to the pharmacy to buy more, she told me that vit D is prescription only, because it's soooooooooo dangerous! So, there you go. Believe it if you like. lol

Charltonjl
Charltonjl in reply to greygoose

So would it be best for me to test my Vit D and other nutrients to know if I do need supplements? If so, where would I do that? Is too much Vit D dangerous then? X

greygoose
greygoose in reply to Charltonjl

Details of private testing, here:

thyroiduk.org/getting-a-dia...

Too much is not good, no. But, according to this pharmacist, you shouldn't take any at all without a doctor's supervision. Which is obviously rediculous, because doctors know nothing about it.

Charltonjl
Charltonjl in reply to greygoose

Thanks so much. You're all so knowledgeable! I'll stop taking my Pregnacare today :)

greygoose
greygoose in reply to Charltonjl

You're welcome. :)

My GP said it's the hardest thing to get NHS testing for. She very kindly managed to arrange it for me earlier in the year, but had to answer 3 questions on the blood form first (and stretched the truth a bit in doing so). Effectively you need to show that you believe it is too low ... obv your previous result was poor. I think they are also restricted in how many times they will test - once a year max rings a bell ... So you may need a private test again.

Rubbish, isn't it the way we have to fight for tests?

So rubbish! My last test was private anyway so the NHS haven't actually tested me. We pay all this NI and they make it so difficult to get anything x

I gave up asking for mine to be tested and now pay for my own fingerprick vitamin D tests from City Assays

vitamindtest.org.uk/?gclid=...

You really shouldn’t have to but sometimes by-passing the doctor is the easiest way to do it.

Thank you ☺️

SlowDragon
SlowDragonAdministrator

How much levothyroxine are you currently taking?

Do you always get same brand of levothyroxine?

Important to regularly retest vitamin D, folate, ferritin and B12

Ask for the other three to be done

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Carpel tunnel is extremely common hypothyroid symptom

Make sure to do thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Come back with new post once you get results

Thank you so much, will do :)

I'm currently on 50mg but on the calculation based on my weight I should be on 125mg. My docs don't look at optimum readings but just if they are in range. I will post my new results on here soon. Thanks again ☺️

SlowDragon
SlowDragonAdministrator in reply to Charltonjl

See different GP or go over their heads and see recommended endocrinologist privately

Email Dionne at Thyroid UK for list specialist endocrinologists

NHS consultation is around year wait and they would likely refuse to see you anyway

On levothyroxine most important result is Ft3, needs to be minimum of 50-60% through range.

Thank you so much. How do I email Dionne? I have private healthcare so should be covered. Do I need to go through my GP in the first instance? X

SlowDragon
SlowDragonAdministrator in reply to Charltonjl

We ALWAYS Recommend you get FULL thyroid and vitamin testing first BEFORE any consultation

Work on improving low vitamin levels and retest thyroid levels again once vitamins are optimal...BEFORE booking consultation

Dionne email

tukadmin@thyroiduk.org

Private consultation, many endo requires letter of referral. It’s a formality if it’s private appointment. GP can’t really refuse, though some are still reluctant

Initial consultation is typically £250

Cheaper on follow up

Roughly where in the U.K. are you

Thanks for this. I'm hoping my private healthcare will cover it as my thyroid condition came about during my policy and not before. I'm in London. I've just checked my blood test forms and they are looking to test Full Blood Count, TFT, Magnesium and Bone Profile. Do I need to add some private tests before seeing an endo? Thank you x

SlowDragon
SlowDragonAdministrator in reply to Charltonjl

Very likely

NHS rarely tests more that TSH unless TSH is out of range

See what comes back

Then get any missing tests done

Always get test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS

Which brand of levothyroxine are you currently taking?

Oh wow, what's biotin?? I'll need to check the brand when I go home. It's in a box with brown on it if it helps?? X

SlowDragon
SlowDragonAdministrator in reply to Charltonjl

Biotin is one of the B vitamins. Found in almost all vitamin B complex and many multivitamins

Biotin is used in many labs within the processing of blood tests

So if taking biotin supplements this can falsely affect test results

Stop any biotin supplements a week before All blood tests

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

SlowDragon
SlowDragonAdministrator in reply to Charltonjl

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva, Aristo and Glenmark are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

That's great information. I def know when I was in 25mg I was on Teva but my 50mg is a different brand. How do I ensure I stick to the same brand? My 50mg tablet is too small to cut in half and I suspect I'll need a higher dose soon and worried they'll make me mix brands :(

I recall my partner was told a couple of years ago that GPs won't / aren't allowed to test vitamin D more than once a year, so it's possibly due to that rule.

I made an online appt with a physio a few weeks for suspected cubital tunnel/carpal tunnel issues, he said that takes many years to build up and if symptoms come on suddenly, it's more likely shoulders. If the shoulders become tense, it squeezes the nerve that is also affected by cubital/carpal tunnel, and he suggested shoulder exercises. It's well worth a shot! It really helped me out :)

Charltonjl
Charltonjl in reply to Cooper27

Oh thank you! I'll do that ☺️

Charltonjl
Charltonjl in reply to Cooper27

They've never tested me for Vit D. I did it privately :(((

Cooper27
Cooper27 in reply to Charltonjl

Oh!

There's an aversion to vitamin D testing in general. It was a hospital consultant who said if she tests more than once a year, she gets in trouble. If she can't test at will, even with a genuine clinical need, I suspect testing "out of curiosity" would be thrown out too, unfortunately.

What dose vitamin D were you supplementing prior to your test? Many gurus would tend to supplement 1000IU through winter without worrying about getting tested first, so that is an option if you are worried.

Charltonjl
Charltonjl in reply to Cooper27

I suspect you're right. I was on 1000iu prior to the testing and then my result was 39. I am now on 5000iu (tablet and spray). I guess I should get a vitamin test to ensure I'm not over doing it x

Cooper27
Cooper27 in reply to Charltonjl

1000IU won't do much to increase your level from low, so I wouldn't worry you'd overdone it too much :)

This guide is pretty handy:

google.com/url?sa=t&source=...

(this will download a Pdf from betteryou's website).

What type of vitamin D supplement are you taking?

Charltonjl
Charltonjl in reply to Cooper27

Thank you. I'm taking 2 tablets and spray with K2 3 times a day xx

Cooper27
Cooper27 in reply to Charltonjl

Us thyroid patients don't get much vitamin D from tablets (unless it's liquid capsules) so it might be worth replacing with a spray, just to be sure you're getting the amount you think you are :)

Charltonjl
Charltonjl in reply to Cooper27

I use the spray 3 times a day. Think I need a nutritional blood test to see where my levels are :(

Cooper27
Cooper27 in reply to Charltonjl

Ah ok, I think I misunderstood!

Yeah, it sounds like you'l need to test again. I'd personally supplement the higher dose for a month before retesting though, and stop supplements for about a week before retesting (a few weeks off for B12)

Charltonjl
Charltonjl in reply to Cooper27

Oh wow, so if I did a full nutrients test, I should stop Vit D and any other supplements a week before? Sorry this is all new to me. Thank you :)

Cooper27
Cooper27 in reply to Charltonjl

I'm not a proper expert on it, I think people recommended stopping vitamin D a few days before, I just took it up to a week to be sure. It'd give skewed results if you took it the day of, that's a definite.

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