I’m sub clinic apparently. I plan to start V D but my first look at what’s available is confusing. Is there more than one V D as I see some are called D3? Is the RDA amount available or do you just take lots to make it up.
I’m 61 female with AI rheumatoid conditions and veggie.
it’s D3
Recommend taking mk-7 with it
This is helpful for dosing :
grassrootshealth.net/projec...
Really handy Vit D calculator, just to clarify it's K2 mk-7 which aids the calcium to go to the right places
I find a liquid sublingual works well, usually use Nature Provides but have just bought a different one that is almost twice the size and cheaper 🤞amazon.co.uk/dp/B09V979BZX
Thanks , what is k2 mk7 please
D and K should be taken together.
Vitamin D helps with the absorption of calcium, and Vitamin K2 activates a protein that directs that calcium to the bones and teeth, where it's needed, rather than allowing it to deposit/calcify in arteries and soft tissues.
Keep 4 hours on either side of your Levo. And if you are getting specific you could also make sure to take D/K along with a meal containing fat, as this can enhance absorption (since D is fat soluble.)
Also, although there is little research, 100 mcg of K per day is typical, but I’ve also read that it’s 100 mcg PER 1000 ius of D.
Personally I am taking 7500 D plus 400 K. Many use the D/K combos which have their own mix.
It is not believed that you can take “too much” k, but also it’s acknowledged that there isn’t enough research to say one way or another.
Thank you. I’m not on any meds, GP won’t test and said go away. She’s cross no cancer has been discovered as indicated in bloods. I told her Stills is AI consider AI thyroid issues, she said no evidence. I have all the symptoms but that’s not evidence apparently
hi don’t let the doc fob you off they did the same with me at first I had a goitre had scans blood test which came back subclinical told no cancer was discharged to me my symptoms and goitre where getting worse got doc to re referred me long story short after my consultant getting a second opinion we talked about full thyroid removal which I said yes they still on the day of surgery tried to get me to just have half removed I refused and said full so glad I stuck up for myself after the thyroid was removed and tested there was cancer in the good side which was only small but still cancer I don’t want you to start worrying but go back to your doctor and ask to be referred as your body is telling you something isn’t right hope you get to where you need to be x
Good advice thank you. Are you fully recovered and well treated now x
Had it done in October scar healing very well I’m not right with my levels gone from being over having hot flashes to dropping dose and now aching feeling fatigue got bloods in couple weeks see where I’m up to I’m being very positive and reading a lot to learn more it can be very frustrating when you feel your not being listened to I had one consultant say a women of your age it’s normal I was 53 then which I replied I’m not having that it’s your body your health stand up for yourself don’t let them fob you off hope you get the help you need it’s not in your head x
One locum GP has already said that to me back in February 23 when these new ( not related to my rheumatoid condition) started. I was extremely cross when he said I was anxious about my weigh loss. I said so it’s normal to drop 16 pounds in 3 weeks without S&D while eating normally then. He replied what tests do you want! I replied I want you to do the tests you originally stated were necessary to rule out ulcer, liver cancer and ovarian cancer. April 23 clear gastroscopy, Nov 23 ultrasound scan shows diverticulitis, Dec 23 hysteroscopy normal for my age, Jan 24 clear colonoscopy. So no cancer thankfully. Throughout all drs have ignored my known AI condition and dismissed symptoms possibly thyroid related like low BP, high cholesterol, blurred vision, thinning hair, dents in nails, fatigue, nausea, vaginal spotting (61) poor sleep, moods, fear, loss of libido, lack of concentration, sore mouth etc etc.
Some days wonder if I’m dysfunctional and delusional.
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Good to know thank you. Reading here over the last few months led me to think Hashimoto’s. I have other AI conditions. Do you consider peripheral neuropathy a symptom?
Symptom of low B12 definitely
As a vegetarian you should always have been supplementing B12 daily and vitamin B complex
But test now before starting to see exactly how low your levels are
SeasideSusie used to recommended this, as well as other D3/K2. Worked for me
googleadservices.com/pagead...
The link is not working on my pc ,any suggestions please.
I think it's this natureprovides.com/products...
great link for calculator… thankyou
What are your most recent results
Test vitamin D BEFORE starting any supplement
either test vitamin D on its own
NHS easy postal kit vitamin D test £31 via
Or test with other essential vitamins, especially important as you are vegetarian it’s ESSENTIAL to test B12 and iron and ferritin
What B12 are you currently taking?
academic.oup.com/nutritionr...
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
You say your thyroid is subclinical
What are results
Retest 6-8 weeks after first abnormal thyroid results
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Extremely common when vegetarian to have low iron/ferritin
I have no test results.
I’m not taking anything.
I have thyroid symptoms, GP days sub clinical - the end.
I follow here and vit D seems obvious route.
No point in private tests as GP won’t prescribe.
They are fed up of me after all the scopes not finding any cancer as indicated by bloods.
I’m on my own. Is there a case for me to take vit D?
So like thousands of members on here
You need to test levels yourself
And then supplement
As you are vegetarian it would be better to test all four vitamins together as you are highly likely low in B12 and ferritin as well as vitamin D
But if you prefer start with just testing vitamin D
Low B12 and/or low ferritin can cause symptoms in their own right and will definitely exacerbate thyroid issues
Thanks for that, it’s what I will do
There are many private companies that lots of us on here use. There are also many whose budgets won’t allow for private testing, especially when so many tests are required. On top of which, in the early days of starting thyroid replacement, testing should be carried out fairly frequently
So, there’s a new-ish kid on the block for private tests. Randox Health. They have recently added a fairly comprehensive general test, £69, which includes:
Heart Health
Diabetes Health
Iron Status
Kidney Health
Liver Health
Nutritional Health
Muscle Health
Thyroid Health
Unfortunately, for some reason ferritin isn’t included nor thyroid antibodies and neither does it state whether the B12 part is active B12 but I would say the kit is a good starting point and will give indicators of deficiencies and anomalies and will help you decide your next course of action
If you would prefer to start with possible nutritional deficiencies then look elsewhere another better because Randox covers only B12 and D3
I should add that I’ve never used Randox and cannot comment on it but I’m sure others on here have and will be able to tell us of their experiences
They have a standalone thyroid test, £29. It includes both antibodies, which by the sounds of it, looking at antibodies (if they’re positive) will be really helpful in getting your GP to take notice
I’ve used vit D for many years. I suffer with Stills disease. Not sure they help but I haven’t had covid or even a cold in three years!
I use. Vegan Vitamin D3 400iu Tablets | Muscles, Immunity, Bones, Teeth | Oxford Vitality (120
I get them from Amazon
Hope these help
Thank you that’s helpful
Just reference your own blood tests for the amount of D you need. 400 ius likely won’t be enough for someone with a thyroid disorder as that interferes with absorption.
But most important is to test your own D3 before supplementing and then regularly after to ensure you are not taking too much. D is fat soluble, and therefore your body can’t excrete excess and it can become toxic.
Fabulous info thank you. So do my own test, keep notes, self test and amend and amend vit D accordingly to maintain levels. Got it, thank you , I’ll do this and report back in a few month I guess.
I take D3 capsules.
I vary between 1000iu and 3000iu depending on my vitamin D Medichecks test results. I either test with City Assays if I just want to test my D3 or Medichecks if I want to test other things.
With City Assays you just prick your finger and drop the blood onto a specially prepared card, with Medichecks you fill a little bottle.
I also take K2 MK7 along with my D3
Thank you. Is d3 vit d too?
It is , same
Yes
Presumably your hypothyroidism is autoimmune?
GP should do coeliac blood test at diagnosis of autoimmune thyroid disease
nice.org.uk/guidance/ng20/c...
1.1 Recognition of coeliac disease
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
A visit to ER in October produced negative coeliac test.
I have not been tested for diabetes.
I have almost all the symptoms you list.
No family history of thyroid or coeliac.
I don’t have IBS and a recent negative colonoscopy.
GP says nothing found go away but I’m still unwell
Common story. Stick with this forum and we’ll help you out!
Do you have any thyroid blood test results at all?
In summary:
1) do yourself a big favor and if you haven’t already get your thyroid panel. See SlowDragon post above for how and what to test.
If you have any TSH, Free T4, and Free T3 results already please share.
2) there are also 4 key vitamins/minerals that need to be “optimal” for people who are hypothyroid. These are Vit D, Folate, B12 and Ferritin.
The Ts… and those 4 … become your dashboard, over time for optimal thyroid health.
Low Ts interfere with the absorption of those 4, which in turn interfere with the healthy functioning of your thyroid. Downward spiral : )
So read replies above (I think mostly SlowDragons for the detailed test info). Start with those tests. One step at a time as the blood tests and your symptoms together will allow you to put a specific action plan in place.
Then come back and let us know the results!
Thank you. SlowDragon has sent detailed instructions on what to do , also thank you.
I’m stalled though. If GP won’t look at tests private or otherwise then I’m testing purely for peace of mind snd the ability to supplement effectively. I don’t mind if that’s the case , I just need to know x
You supplement in the meantime.
But once you have thyroid test results you will then be able to get the collective wisdom of tons of people on this board who navigate the NHS.
Many hypo people are served by the NHS, many are not… and yes, some self-treat their thyroid hormone replacement.
A novel could be written on all these situations.
But DON’T get ahead of yourself!!! You don’t know what your blood test results will tell you until you get them.
Thyroid panel and those vitamins/minerals first!
Thank you , I get it now. So much info on this, bit overwhelmed and only just had last scope for cancer which was neg. So this is my next step. X
Come back with new post once you get results
Meanwhile here’s examples of other members private test results
You will see time and again that vitamin levels are very poor
When hypothyroid we frequently need to supplement vitamin D, magnesium, vitamin B complex continuously to maintain good vitamins
And many (especially if vegetarian or vegan) will need separate B12
And many, many members struggle to maintain good iron/ferritin
getting all four vitamins tested at least annually and maintaining OPTIMAL levels is essential for helping thyroid and reducing symptoms
Medichecks results
healthunlocked.com/search/p...
Blue Horizon results
Re getting Thyroid tests:Monitor My Health "MMH" will do the 3 basics TSH, T4, T3, reasonably cheaply. They are an NHS lab - Royal Devon and Exeter Hospitals, so in due course you can show results to GP, and GPs will then usually pay attention.
But low Vit D and low B vits will also make you feel rotten, so check what those are too. The wisdom and guidance on this forum is so phenomenal, but you have to give the test result numbers.
Thank you I’m learning quickly here
The standard treatment for Vit D deficiency is 60000IU/week for 2 months and then the same every month. Taking <=10000 IU/day is not toxic and one does not need to worry about toxicity. You can test after the 8 loading doses to see if what your levels are and if OK, then perhaps test after a few months of maintenance dose.
Some people find 400 a day feels toxic!
It is likely a good idea to start much lower than 60,000. Just to check nothing untoward happens or is felt. Though the more extreme levels of intolerance might be rare, those who suffer really do suffer.
(Corrected typo.)
I got this information from here:
vitamindsociety.org/key-res..., which says that no toxicity below 30,000IU/day.
My levels quickly rose with even modest supplementation, so I only take 60,000IU/month and even that gives me levels fairly high in the range, but others may have a different experience.
Perhaps it has to do with some other deficiencies as well that get unmasked in some people when they take Vit D?
Yes - the standard advice is as you say.
But I know there are people who cannot tolerate it in even pretty low dosing. Whether that would formally be called "toxicity" is a question. But it certainly affects them as if it were a toxin.
I do wish vitamin D promoters would just be a bit more thoughtful and cautious.
I couldn’t tolerate vitamin D even at 1000iu initially
Had to supplement magnesium first for at least 2 weeks, then SLOWLY add vitamin D
Dread to think how I would have reacted to starting on high dose
Be careful! I was just told I have too much Vitamin D in my system and was advised to stop taking it after taking it at another doctor’s recommendation. The excess Vitamin D may be related to some persistent digestive, kidney and memory issues.
Too much? How much? Always give a test number when saying something like this. The NHS *still* insists 50 nmol/L is good - yes it is, for stopping Rickets! - I'm sub-clinical autoimmune Hashimoto's and since the Covid injections my husband has developed sub-clinical Ord's. We are on 5,000iu a day + 500 mcg vitamin K2mk7 (both are capsules) which in November gave me a reading of 144 nmol/L (just over halfway up the range) and my husband 120 nmol/L. Any result will depend on your weight/build, and we are both slim but different heights.
And yes, we are on a *lot* of individual vitamins/minerals as well. My body alone simply isn't taking enough of them from my food. We are in our early 70s.
I’m 61 5 foot one and currently weigh 8 stone 7, I was 9 12 but keep losing it
"Always give a test number" you say. Could you say what the reference range is for your vitamin D, please?
I use Medichecks and their lab range (at Nov 2023) for Vitamin D was 50-200 nmol/L. A lot of info is now coming out about how Vitamin D "fires" for want of a better term, the immune system, ensuring enough T-cell lympocites do their job.
Dr John Campbell on YouTube interviews experts - Dr David Grimes and Dr David Anderson are two who talk about Vitamin D a lot.
After much drilling down, the smoking gun in my own AI H-Hypo was a deficiency in Vitamin-D.
Hope this helps.
Thanks. Another Dr Grimes writes about vitamin D supplementing, here:
twitter.com/drg1985/status/...
(multiply ng/mL by 2.5 to get nmol/L)
Something I came across, with respect to Covid:
The problem with the vit D "science" studies is that they never count in the asymptomatic cases which we know (via antibody tests) are 8-10 times more than symptomatic, confirmed cases. Since vit D3 insufficiency is quite common you end up with significantly more asymptomatic cases with D3 insufficiency than mild cases with normal D3 levels. This alone invalidates the theory that D3 insufficiency is a predominant factor in making one susceptible to Covid. The same was said for decades about vit C in common cold and was never really proven. But it helps researchers pamper their CVs and the pharma companies sell dietary supplements.
We no longer have many uninfected controls left, to check the relative numbers, but the number given must've been stated somewhere, early in the (continuing) pandemic. The Twitter/X account it's from no longer appears to exist.
My supplementing (5,000IU on alternate days, following a loading dose) has taken my serum calcium up to a reasonable level, which 65 mmol/L serum vit D from sunshine and food didn't accomplish. Those with a normal calcium level before supplementing should ask for a Bone Profile blood test, as hypercalcaemia should be avoided. The recommendation not to exceed 4,000IU (in one dose, or per day?) may be to protect people with a normal calcium level.
Thanks for that. I shall have a read.
Worrying
The trick, Stills, is not to sit worrying (been there, done that) but to take your health into your own hands, and you've made the first steps coming on here. GPs are both hamstrung and, er... useless. You are not; this group is not.
As has been advised here you need relevant blood results before supplementing *anything*.
a - Medichecks.com currently has a 20% off for January. I use this company for ours and budget for it (£86 normally - I always wait until it's on offer and use within the stipulated 120 days). You need Advanced Thyroid Function via *fingerprick* (sounds difficult, it's not, and very little blood is needed, not like the GPs tubes at all). It gives ALL the thyroid tests except R3 (at this stage not needed) + vital vitamins/minerals, antibodies, and inflammation marker - 10 results in all. Log on *today*, buy it and fill in all the relevant health back-history. It will take you at least half a morning. It is thorough.
b - Monday contact your surgery's Reception for your GP blood test results and any other results to be emailed to you, or printed for collection. If your surgery offers them via the Patient Access app so much the better (ours has finally moved into the 21st century and I download them onto my laptop for printing out). Results come with ranges - look for those high or low in their range. This information may come in useful when the private blood results come back, so it is good to have it at your fingertips.
This is what we do, Stills, we take small steps, ask advice on this forum, take another small step. It works. I - the vast majority on here - are proof of that. Go for it.
Thank you very much, it’s bewildering and overwhelming but your reply helps me get my head around it. We are going away in a few days for three weeks so as soon we’re back I’ll get the tests. My surgery is still in the dark ages but I’ll enquire about my results. Many thanks.
If you don't buy them before the end of January you'll lose the 20% discount. You don't need to use the test immediately; Medichecks allows you 120 days. If you decide to buy on your return there's a 10% discount via using the "ThyroidUK10" code at checkout, and ThyroidUK gets a donation from the company.
Go onto the Medichecks website, find the test and read up about all the info on it under the "BioMarkers" menu at the top - it's quite fascinating and you don't need to register to do this. Print it off for future reference.
Surgery Reception: ask politely but don't be put off (as mine tried to put off me: "are you a medic?!"); look them straight in the eye: it is your statutory right to have on paper every result in your name.
Have a good break.
Thanks again this is all reassuring yet daunting at the same time. Having lived with a chronic AI condition since I was 17 Im used to the pain and immobility it causes along with sore throats and skin rashes but these new symptoms are eroding my tolerance level as they are relentless. I shall investigate that site with interest, thanks again.
If you use the fingerprick test, make sure you follow the instructions beforehand e.g drink plenty of water, exercise, and (particularly in my experience) put hands in very warm water to make the blood flow, then dry with a clean towel and do the test.
Recommend the spray forms of D3 with K2 mentioned here. Pleasant, easy to use and the bottle lasts for ages.
Economy is good as they all look expensive. I’m not working, not on benefits and pension first start for another 5 years so spending savings.
I bought D3+K2 from eBay: 5,000IU tablets, four packs of 120 for £17.56 after a £4.40 discount. My level was 26 mmol/L last March. I've been at 65 mmol/L in the past after a fair amount of sunshine. I followed guidelines on an NHS page about a loading dose, then continued at 5,000IU on alternate days. My GP had me tested recently: 99 mmol/L. My hypocalcaemia has improved, but I notice no difference from supplementing.
Well we’re going to Thailand for 3 weeks so should get some sun but I desperately worried I’ll spoil the trip with fatigue and vertigo attacks but I have meds to take . Thanks fir sharing that information, very handy
One of my last "long" trips was as a passenger on a 400 mile round trip to a memorial service, in March 2015. During the weeks before, I was concerned about being able to keep warm, but on the day my reserves and/or conversion ability "switched on" and I was fine. But nowadays the fatigue stops me wanting to try anything similar. In November 2017 I was offered a trip to India, and refused, so it was a deciding factor, by then.
(Edited for typos.)
I’ll let you know how it goes. I’m used to my physical limitations affecting life choices after being diagnosed with Stills aged 17 and it did alter my life course but it’s been ok
26nmol/L?? Sheesh, SmallBlueThing, I am surprised you could function at all.
I'd realised something was seriously wrong 6 years ago (I was like the proverbial zombie and had to fight to stay awake after eating as little as a sandwich) - blood tests were "fine" (there's no such thing). I read that 6 Brazil nuts a day might help (massive amounts of selenium) and it did (helps T4>T3 conversion).
My mind started to log back on (my memory has never recovered). I started on a daily multi-vitamin & mineral [rolls eyes] while I researched, went back to the GP after three months as I didn't want to "overdo" the supplements [hilarious!] only to be told I was a stupid woman for taking supplements at all [red rag to a bull].
Found Vitamin D & Cofactors UK on FBook (it believes in cofactors in a big way, not just Vit-K2Mk7), bought the late Dr Barry Durrant-Peatfield's book for the thyroid (he was more or less 'struck off' years ago for concentrating on vitamins & minerals - and on to Medichecks and this brilliant forum. Somewhere along the line I had an ultrasound scan on my swollen thyroid to be told by the operative, and I quote, "It's nothing to worry about, lots of ladies get them". You simply couldn't make that up. As someone else on this forum recently stated, would it be all right if "lots of men" got them??
And I apologise for ranting. Again. As usual. Oops...
Look after yourself SmallBlueThing. No one else is going to. 99nmol/L is NOT oversupplementing.
Bringing up my vitamin D level hasn't made any appreciable difference to how I feel -- still getting hand and foot spasms, so GP checked calcium at my request, and again more recently, along with other stuff.
I've had a recent appointment for TED and asked the Prof about selenium. He said the UK population has sufficient dietary intake; I'm not in a flare; and supplementing it can do a lot more harm than good.
Alas, we are all very different; there are so many variables. This is certainly not like taking a paracetamol to ease a pain. Or, despite what the NHS wants us to believe, taking a straight Levo dose.
Many say you should take K2 at a different time to D3 as they interfere with the adsorption of one another.Grassroots health (as above) and vitamin D wiki are good.
The recent interview by John Campbell of Dr Grimes is interesting, Google it.
Hi, if you are on Facebook, there’s a really good group Vitamin D Welllness. Also a book called Defend Your Life by Susan Rex Ryan. It’s important to take D3 in an oil. You also need to take co factors of K2 and Magnesium. You will get the protocol from the book or the group. They also have information on correct products to use (if you have a thyroid issue). I agree, it can get confusing with all the information! Good luck.
Hi
Vit d is absorbed better taken with some oil
All the best
Persevere
Oil? Sunflower , olive you mean?
any oil should be ok as Vit is fat soluble, unlike A, C and E
Someone sent a link to vit d that comes in an oil. Thank for your reply
Vitamins A and E are also fat-soluble. Vitamin C is water-soluble.
There are two vitamins D - D2 and D3. (Missing D1 is due to a mistake many years ago!)
D2 is provided by some sources such as milk in the USA which is treated by exposure to ultraviolet. (Standard practice there, not done in the UK.)
D2 is also commonly the form found in non-animal sources.
D3 is the form that is usually used these days. And non-animal sourced D3 is available. (Much D3 is produced from lanolin - sheep wool fat.)
There is evidence that D3 is definitely preferable to D2. But there is likely an awful lot more to find out about the subject.
Some vitamin D testing separates out results for D2 and D3. Some just lumps them together as one number.
Very often when you see references to "vitamin D" it actually means D3. But not always. So you absolutely do have to check all the time.
I would check with your Doctor. My medication meant that i had to get a Vit D pill that had no calcium in it. Better safe than sorry!
Will do thanks
Vitamin D test results - feeling ropey, advice please?
Advice re vitamin D supplementation
Could I ask for vitamin d advice please?
