Hi All
At my recent bloods a new nurse agreed to test ferritin and vitamin D as well as TSH/T4. Hurrah.
Vitamin D has come back out of range, but no range or measurement is stated on the report! Is this normal, I’ve just spoken to the receptionist and she said on the doctor’s report it just says ‘very low’?
Thanks.
Milkyway88
Do you have the result? The range doesn't matter with Vit D as long as you have the result plus unit of measurement because there are different ranges for different categories. The categories are
Deficient
Insufficient
Sufficient (or Adequate)
If you're in the UK then the range is most likely nmol/L (although occasionally it can be ng/ml) and if your level is below 25nmol/L that is Vit D deficiency and needs to be treated with loading doses from your GP. If it's between 25-50nmol/L that is in the insufficient category and your GP may prescribe a low dose of D3 (which wont probably be enough) or may just tell you to buy your own (but probably wont know how much to tell you to get).
Hi Seaside Susie, it doesn’t give a measurement at all .🤷♀️Just tried to post the results on here, but it isn’t letting me. Receptionist told me to go to a chemist and ask the pharmacist to advise what tablets to take! Then missed that I need to book for a bone density test. No other results are back yet, that could be interesting when they arrive. Thank god I see my notes!
Receptionist told me to go to a chemist and ask the pharmacist to advise what tablets to take!
Receptionist has no right to tell you anything of the sort, she is not medically qualified, that sort of suggestion should come from a GP.
Try again to post your image, click on the rectangle at the end of the row of icons below the REPLY message box and upload your image, hopefully it will work.
Or just post the number, it may well give a clue to the unit of measurement.
I'm off to take the dog a walk, will check back here when I return.
Here it is
So you need to know exactly how low vitamin D is
Suggest you get tested yourself
Test twice yearly via NHS private testing service when supplementing
Results don’t make sense
If you’re vitamin D deficient, ie vitamin D is below 25nmol you should be prescribed loading dose of 300,000iu in total over 6-8 weeks
If your vitamin D result was insufficient, ie between 25nmol and 50nmol you should be prescribed 1600iu per day for 6 months
See NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid disease we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Government recommends everyone supplement October to April. Do you normally supplement every winter
gov.uk/government/news/phe-...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
Milkyway
OK, so that says Vit D deficiency although no result. It looks like they've given you a prescription of InVita D3 1 x 800iu daily
Receptionist told me to go to a chemist and ask the pharmacist to advise what tablets to take!
So that looks like you've been told to buy your own, yet your image shows they've given you a prescription.
Crossed wires somewhere? Has the receptionist told you to buy your own and you should have been issued with a prescription?
Have you actually had a prescription?
A couple of things here:
1) It states Vit D deficiency. That is only diagnosed when Vit D level is less than 25nmol/L.
2) You should ring your surgery and clarify the following:
a) What is your actual result
b) It says Vit D deficiency and your GP should follow the treatment guidelines
c) It says to prescribe InVita D3 and you have been told to discuss with pharmacist to, presumably, buy your own.
If you have a diagnosis of Vit D deficiency then point out the following guidelines which the GP should follow:
cks.nice.org.uk/topics/vita...
..... (snipped, you may want to read all of it) ....
* If rapid correction of vitamin D deficiency is needed, for example in people with symptoms or about to start treatment with a potent antiresorptive agent (zoledronate, denosumab, or teriparatide), prescribe a fixed loading dose followed by regular maintenance vitamin D therapy 1 month after loading.
The loading regimen should provide a total of approximately 300,000 international units (IU) of vitamin D, given either as separate weekly or daily doses over 6–10 weeks. See the section on Loading dose regimens in Prescribing information for more detailed information.
Maintenance therapy of vitamin D equivalent to 800–2000 IU daily (up to a maximum of 4000 IU daily for certain conditions such as malabsorption following specialist advice), given either daily or intermittently at a higher equivalent dose.
Note: vitamin D may be prescribed for people with osteoporosis or a chronic condition or surgery that results in deficiency or malabsorption. Advise other people that maintenance therapy should be bought over the counter.
* If correction of vitamin D deficiency is less urgent and when co-prescribing vitamin D supplements with an oral antiresorptive agent, maintenance therapy (800–2000 IU daily) may be started without the use of loading doses.
Note: vitamin D may be prescribed for people with osteoporosis or a chronic condition or surgery that results in deficiency or malabsorption. Advise other people that maintenance therapy should be bought over the counter.
Your GP may have decided that you do not need "rapid correction" of Vit D deficiency in which case he has prescribed the lowest possible dose of 800iu daily. This amount is barely a maintenance dose for someone who already has a good level, it's even suggested that we all take more than this in the winter when we can't make Vit D naturally from the sun. It will take a very, very long time, if at all, for Vit D deficiency to be resolved with just 800iu D3 daily.
There is more to supplementing with D3 that I have written here, but I wont go into further detail in this reply. See if you can find out exactly what your level is, then come back and let me know, then I will pass on further information.
What was your ferritin result?
Any other tests done - thyroid, B12, folate? If so can you post the results, with ranges, if you have them. Vit D deficiency doesn't tend to come along alone, there may be other problems.
Looking at previous posts
There’s no mention of how much levothyroxine you are currently taking
How long on this dose and what actual results are
As SeasideSusie says ……low vitamin D suggests your thyroid levels may not be optimal and folate, B12 and ferritin need testing
Hi, Seaside Susie and Slowdragon, thank you for replying. Yes, GP has prescribed vit D, fortunately because I have sight of the notes I could point this out to the receptionist. She said this when I asked what the actual result was numerically. Also, I noted I’m supposed to have a bone density test, which she didn’t notice. I have no idea what she was reading from, honestly this is typical, sadly. I don’t know how to get the actual result without ringing the lab.
I’m on 100 thyroxine atm (Teva) and waiting to see what other results are.
I was ready to get tested privately, and think I’ll go with that now. This was my regular TSH / T4 test, and nurse added ferritin and vit D. I asked for vit B too but not sure if this was requested.
Sorry I’ve been a while, I’m at work and sneaking on here when I can.
Don't worry about that.
Please find a way of getting the exact result. The image you have posted looks very much like what the system has in place for in the future possibly, ie "Recall" - does that mean that once the 84 x 800iu D3 tablets have finished then you will be retested?
You can ask the receptionist for a print out of the results, emphasing the "results" which will include a number and a reference range. The reception staff at my surgery are generally very good, I do sometimes wonder how some of them get their job when we read of instances such as yours.
As I said, 800iu will not help and you need much more than this but we need to know your level before suggesting a dose.
Total results have now been added, including details of Vit D.
So your vitamin D is severely deficient and 800iu vitamin D is not anywhere near high enough dose
Make new appointment with GP
Print out NHS guidelines
Prescription should be total of 300,000iu vitamin D over 6-8 weeks
That’s 5000iu per day for 8 weeks
Or
7000iu per day for 6 weeks
Retest vitamin D at end of the course
Alternatively self supplement
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
Well Milkyway88, my jaw has just dropped.
A level of 15nmol/L is severe Vit D deficiency. That is what mine was a few years ago when I tested (privately, along with lots of other tests to get to the bottom of my problem). In my opinion a prescription for 800iu once daily is nonsensical. I doubt very much whether you will raise your level to an optimal level in your lifetime with that dose.
Personally, I self treated, I just couldn't be bothered with my GP. I managed to raise my level in 2.5 months to above the level recommended by the Vit D Society and Grassroots Health, so I then adjusted the dose and I now take a maintenance dose all year round which keeps my level just under 150nmol/L.
So, really, you have the choice, you continue with what your GP has prescribed and he does seem to be following the guidelines but has decided that you need less urgent correction of your deficiency and given you the absolute minimum dose, or you can follow the guidance for rapid correction by doing the loading doses yourself.
Information about loading doses here:
cks.nice.org.uk/topics/vita...
Loading dose regimens
Several vitamin D loading dose treatment regimens are available, including [ROS, 2018]:
50,000 IU once a week for 6 weeks (300,000 IU in total).
40,000 IU once a week for 7 weeks (280,000 IU in total).
1000 IU four times a day for 10 weeks (280,000 IU in total).
800 IU five times a day for 10 weeks (280,000 IU in total).
Note: this list is not exhaustive.
The aim is to achieve the level recommended by the Vit D Society and Grassroots Heath, which is 100-150nmol/L with a recent blog post on Grassroots Health recommending at least 125nmol/L. Once you've reached this level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The company has told me the K2-MK7 is the Trans form
natureprovides.com/collecti...
It may also be available on Amazon
Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
naturalnews.com/046401_magn...
drjockers.com/best-magnesiu...
As for the other results:
B12: 378ng/L
This is low although your GP wont be concerned because it's within range.
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Assuming that you have no signs or symptoms of B12 deficiency, which you can check here:
b12deficiency.info/signs-an...
b12d.org/submit/document?id=46
You could supplement with a sublingual methylcobalamin B12 to bring your level up to 550ng/L (which is the same as pg/ml mentioned above), along with a B Complex to keep all B vitamins balanced. Once this level is reached then you can stop the B12 and just continue with the B Complex. Obviously, if you have signs of B12 deficiency listed in those links then discuss with GP and ask for further testing for B12 deficiency and Pernicious Anaemia.
Suggestions for B12 supplements which include two forms of bioactive B12 - methylcobalamin and adenosylcobalamin which you might want to check out:
Cytoplan sublingual B12 lozenges
cytoplan.co.uk/vitamin-b12-...
Nature Provides sublingual liquid
amazon.co.uk/Bioactive-METH...
Note that the Nature Provides supplement contains a much higher dose than the Cytoplan one.
For a good quality Complex, I have used Thorne Basic B for a long time and always been happy.
If you look at different brands then look for the words "bioavailable" or "bioactive" and ensure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid). Avoid any that contain Vit C as this stops the body from using the B12. Vit C and B12 need to be taken 2 hours apart.
When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do).
Ferritin: 40.9ug/L (20-260)
Here we have another low level but again it's within range so GP wont be bothered. Ferritin is recommended to be half way through range although some experts say that the optimal level for thyroid function is 90-110ug/L.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
bda.uk.com/resource/iron-ri...
everydayhealth.com/pictures...
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little. You could ask your GP to do the full iron panel, it is available to do privately with a fingerprick test with Medichecks if GP wont do it.
All these poor nutrient levels could possibly point to you having autoimmune thyroid disease (Hashimoto's) as it's common to have low levels or deficiencies when Hashi's is present. Have you ever had thyroid antibodies tested or do you already know if you have Hashi's? In fact, do you have a diagnosis of hypothyroidism? I can't see it mentioned here or in your profile or other posts.
Thank you SeasideSusie and to Slowdragon so much for all this. It does explain the struggle I’ve been having.
I was originally hyperthyroid and had the ROI treatment 20 odd years ago. It wasn’t ever explained to me why I developed his and always relied on GPs’ expertise to monitor. (😐). I’ve complained about tiredness etc for years, but if I’m in range they aren’t interested, and either tell me to write things down if my memory is poor or given me antidepressants. Once I got signed off work for a week, not sure how that would help. If not in range, Thyroxine is just bumped up and down like a yo-yo. It will go out of range again soon.
Thank goodness I’ve found this site as I can take control myself. I think I’ve identified an endo from the list, so will make an appointment.
Auto immune - sadly a big family thing. For me it’s asthma, rhinitis and atopic dermatitis too.
I will have a good read later and start dealing with the vit D.
Milkyway88
Auto immune - sadly a big family thing. For me it’s asthma, rhinitis and atopic dermatitis too.
Well, that could be a big clue!
Were you diagnosed with Graves disease and persuaded to have RAI?
If so, were Graves antibodies tested - TRAb and TSI antibodies?
It's possible to have both Graves and Hashi's.
However, Hashi's tends to start with a hyper episode and this is often mistaken by doctors as overactive thyroid and wrong treatment is given, and it's Hashi's all along.
With Hashi's (autoimmune thyroid disease) it's where the immune system attacks the thyroid and gradually destroys it. Fluctuations in results (and symptoms) are part and parcel of Hashi's. Here's some general info about Hashi's:
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Of course, this may not be your problem.
If your dose has been adjusted according to the TSH result, then this is not an indication of our thyroid status - it's the FT4 and FT3 that measure the actual thyroid hormones (TSH is a pituitary hormone), so it's those two results that should dictate any dose adjustment - particularly the FT3 as that's the result that tells us if we are overmedicated.
To get an accurate measure of our levels and to compare them we always advise:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Thanks for all the information.
I have no idea if it was Graves, the word was never used, just over active thyroid and a course of Carbimazole. Wouldn’t be surprised by anything to be honest, I don’t have a lot of faith in the local service.
Thanks to this page I am now booking my tests early morning with no food or drink, and taking my thyroxine before breakfast too. (Not on draw days). None of this was said, in fact I don’t believe anyone at the surgery is aware. Also I saw on here about selenium, which I don’t take so am looking into that too.
Do you know how far back your medical records would track? I’d love to get some answers!
Do you know how far back your medical records would track? I’d love to get some answers!
Sorry, I don't. I've never bothered asking for mine, I really don't want to know what they've said about me 🤣
I imagine that they should have everything since records went digital, I see no reason why not, but am very open to someone telling me I'm wrong and there's a time limit. But there shouldn't be a time limit should there, at least not whilst we're still alive!
The old hand written records might not be available, especially if the patient has changed surgeries.
How far back do medical record track ?
A couple of years ago a i did an SAR ( Subject Access Request) to my current GP surgery asking for "all blood tests / results, and all GP consultations, from 1991 to present." i have moved surgeries , within the same CCG, about 4 times in that period.
I received a copy , on password protected CD, of 'everything' from about 1986 onwards. which was when i moved to this CCG area.
The older bits had obviously already been summarised / transposed to digital record, ( some incorrectly ) but there were also images of the original paper documents .ie. that Lloyd George? card in the little cardboard envelope .
So it is possible to go quite a long way back, but i suspect this largely depends on how careful various surgery's have been at keeping things up to date and chasing up previous records when people move surgery ..mine seem to have been fairly good at this over the years .. but then i didn't used to go to the GP very often, so it wasn't massive . Hospitals keep their own records i think , so hospital test results, scans etc won't necessarily be in there, but referral letters and consultants letters to GP will be..
Be warned.. if you get your past medical record you will probably find a few comments that make your blood boil, and also some idiotic inaccuracies ... according to my ' medical summary' it now seems i had 'post natal depression' the year BEFORE i gave birth... (when in fact i didn't even have post natal depression after the birth )
Vitamin D / Folate Levels
Vitamin D maintanance dose
Ferritin and vitamin d
Vitamin D results
