Hi there. I was diagnosed with hypothyroidism in March 2019 and have been taking 100mg Levothyroxine since June 2019. I was also diagnosed with fibromyalgia around 11 years ago, although I've always struggled to recognise this as a genuine condition. I recently sent off a blood test to Medicheck and the report I received from them identified that I am Vitamin D deficient. They recommend "supplementing with 80 mcg (3200 iu) of vitamin D per day for twelve weeks. After 12 weeks you can decrease your vitamin D supplementation to 10 mcg (400 iu) per day."
I am interested to know if anyone else has a history of muscle pain, fatigue, sleeping for 12-15 hours, and 'brain fog' (my fibromyalgia symptoms) being relieved with vitamin D?
The Medicheck test also identified "normal levels of vitamin B12, but it is towards the low end of the normal range. To work out whether there is significant underlying B12 deficiency I recommend arranging a serum methylmalonic acid blood test. If you suspect you have healthy diet complete with lots of B12, then instead I'd recommend a pernicious anaemia check, as having one autoimmune condition (Hashimoto's) makes it more common that you might have another (pernicious anaemia - unable to absorb B12). I've suggested both these tests for you and you can pick the most appropriate one." Would either of these tests be carried out by my GP?
Thank you for anything you can offer.
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Lleggy
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They recommend "supplementing with 80 mcg (3200 iu) of vitamin D per day for twelve weeks. After 12 weeks you can decrease your vitamin D supplementation to 10 mcg (400 iu) per day."
Oh dear 🙁
This is just about the worst comment I've seen from Medichecks, this doctor really hasn't got a clue.
You have severe Vit D deficiency and you should discuss this result with your GP who should follow the NICE Clinical Knowledge Summary for treating Vit D deficiency and prescribe loading doses of D3 totalling 300,000iu over a few weeks:
"Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.
* Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
When the loading doses have finished it's essential to retest because your follow on dose will depend on the new result, and it will be much more than 400iu (that's a dose recommended for a child during the winter). Your GP may offer 800iu but that wont be enough, from there on you are better buying your own supplement.
If your GP wont retest after the loading doses have been completed, then you need to do it with a private test and come back with the new result for further suggestions on how to continue.
If your GP wont accept the result of this test you have two options:
1) Invite him to do his own test or
2) Treat yourself (come back for further help with that).
The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L. Your GP wont know this, they're not taught much, if anything about nutrition, they just see a result in range and think it's perfect. Your GP will most likely aim for 50+
Once you have reached the recommended level then you'll need a maintenance dose 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. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
I had severe deficiency with a level of 15nmol/L and I now maintain mine as close to 150nmol/L as possible.
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council.
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.
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.
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. 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.
Your GP wont know about these cofactors either and you wont get them on prescription, this is something you will have to buy yourself.
**
VITAMIN B12 - ACTIVE
39.7 pmol/L > 37.5 R
At least he got the comments about this correct. This is an extremely poor result and Active B12 below 70 suggests testing for B12 deficiency. See Viapath at St Thomas' Hospital:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
**
FOLATE - SERUM 6.69 ug/L > 3.89 R
This is low but not deficiency (it would be better in double figures) and will need a little help but only after further testing of B12. Your GP will think this result is fine so once you have results of further B12 test come back for suggestions on what to do about your folate.
**
THYROGLOBULIN ANTIBODIES 1,183 kIU/L < 115 R
THYROID PEROXIDASE ANTIBODIES 115 kIU/L < 34 R
These results confirm autoimmune thyroid disease aka Hashimoto's. Did you know you have Hashi's? This is where the immune system attacks and gradually destroys the thyroid. It's the most common cause of hypothyroidism.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
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.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies and this borne out in your Vit D and B12 levels.
**
TSH 0.254 mIU/L 0.27 - 4.2 R
FREE T3 4.52 pmol/L 3.1 - 6.8 R
FREE THYROXINE 20 pmol/L 12 - 22 R
Your current results are pretty good. The aim of a treated Hypo patient on Levo is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Your FT4 is 80% through range and your FT3 is 43.29% through range. They're not well balanced and show that your conversionof T4 to T3 isn't that good at the moment. However, this may improve once your nutrient levels are all optimal so you should wait and see about that. The selenium mentioned above helps with conversion.
I have a telephone appt with GP at 2. Have emailed blood test results and information provided here, to the GP practice, so that should help the discussion. Am hopeful of a positive outcome and I will post here!
Can I clarify - as well as magnesium, I need to puchase Vit K2-MK7 ? Is it just the RDA I need to take?
Thanks again. I don't know where I'd be without this site.
As for Vit K2-MK7, it's said that 90-100mcg is enough for up to 10,000iu D3. I really should add that to the information I post, it's a copy and paste job from notes I made a while ago.
The GP hadn't received the email I sent this morning, and asked that I re-send (which I now have.) He is happy to prescribe vitamin D ... and I mentioned that I have included the NICE guidelines link in my email (because I'm not sure how much he would otherwise prescribe.) He has also arranged that I have a blood test tomorrow morning, to confirm B12 info and he will discuss with me once those results are in. He noted that B12 was in the middle of the range, when bloods were last checked by NHS in July last year.
So - I will receive the prescription and the Vit D dosage will be adequate, hopefully. I will but Vit K2-MK7 and magnesium, to support absorption of Vit D. The GP blood tests will identify whether I can take Vit B12 supplements, or require B12 injections. Is that right?
So your Vit D should total either 280,000 or 300,000 over a number of weeks, let us know how he is prescribing that.
It might be worth checking if Vit D test will be repeated after the loading doses have finished. If not then plan for the private test (costs £29).
Good to hear he is looking into B12, the B12 deficiency test is MMA and possibly Homocysteine as well.
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.
I will let you know as soon as I collect the prescription from the pharmacy - may be two days before I have it. I will ask GP about any plans for re-testing Vit D levels, when I speak to him about the results of tomorrow's blood tests.
So when you say not to start all supplements at once, do you mean start the Vit D on its own - no magnesium or Vit K2-MK7 for the first week, and only introduce one of these at a time?
GP has prescribed Fultium-D3 20,000 iu capsules. I have to take 1 twice a week, for 7 weeks, so I note that this fits with what you stated.
That's a good start
Renmember that it's essential to retest once those loading doses have finished, and if your GP wont do it then you'll need to do a private test, link given above. Come back with the new result once you have it for advice on what your follow on dose should be.
Don't forget also that you need the cofactors - Vit K2-MK7 and magnesium as mentioned previously.
Vitamin B12 - 313 pg/mL with normal range being 191-663
That's too low, but it's not the best test anyway, Active B12 is the better test as it tests what is available for the cells to use. Total B12 (your GP test) measures both bound and unbound (active) B12 so doesn't show what's available for the cells to use.
Did you check the link for signs/symptoms of B12, did you have any and if so did you list them to discuss with your GP? If you have any then your GP should test for B12 deficiency as they should go by symptoms not numbers. Your Active B12 result is dire and that alone suggests testing, as mentioned above.l
Folate - 'Sample haemolysed, unsuitable for analysis
I will have to retest vitamin D privately, as GP did tell me, previously, that it is not done by the labs in our local NHS Trust. Am happy to do that, though, and i will post results here. At what stage should I do the re-test ... right at the end of the 7 weeks? Am just about to order the Vit K2-MK7 and magnesium, as you advised.
I have a few symptoms that could potentially be associated with B12 deficiency: forgetfulness, irritability, chronic pain (in the upper part of my body), chronic fatigue, nominal aphasia, and ? sleep disturbances (sleeping for 11-15 hours at a stretch.)
I didn't discuss these with my GP during our telephone conversation; I think this was because he was keen to re-test and I felt so confident the results would agree with Medicheck ones and speak for themselves. Also, GP has previously diagnosed me with fibromyalgia, based on these symptoms.
Can I go back to GP and discuss/challenge the type of testing that the NHS lab carried out - pointing out that Medicheck result is for active B12, and is poor?
I assume the GP has no plan to repeat test as he is taking no further action re any of the results.
Yes, retest after the loading doses have finished. With Vit D deficiency, supplementing is for life, once you have reached the recommended level (100-150nmol) then you need a maintenance dose to keep it there. My level was 15nmol and to now maintain it as close to 150nmol as possible I have to take quite a high maintenance dose, others do fine with lower than my dose.
You can certainly ask your GP to look further into your B12 and point out to him that the Active B12 test is done at St Thomas' Hospital and give him a copy of that article.
I have another phone appt with GP, later today. I planned to send the St Thomas Hospital article, but it's currently not accessible via your link. Is there another link you could send?
Also, so many people seem to be going to 'salons' to have vitamin B12 injections - it seems to be the latest thing. Are these injections the same as the ones GPs provide for actual health conditions, do you know?
If you scroll down there is a link to print it as a pdf.
Also, so many people seem to be going to 'salons' to have vitamin B12 injections - it seems to be the latest thing. Are these injections the same as the ones GPs provide for actual health conditions, do you know?
I have no knowledge of these but I would want to know if they are trained to give injections and the origin of their ampules. I think if I was going to consider this then I'd self source the ampules from somewhere reputable (PA forum has information, some members there self inject from what I understand.) and inject myself.
I have managed to open the link on my phone. Thank you 👍
The B12 injections - I am only interested in these being widely available because it almost implies that they're not a real 'treatment' .... everybody should have them to make them feel better / give themselves a boost 😐
So, I had another phone appointment with GP on Monday. He has confirmed that he cannot re-test Vitamin D at end of loading dose, as the NHS lab in our area will just not do this.
I discussed the B12 results and he acknowledged the point about 'active' B12 - however said that even this is within range, according to results provided by Medichecks. He also made acknowledging noises when I mentioned the terms 'coeliac' and 'leaky gut' which made me feel he has some recognition/understanding of the bigger picture. What he has encouraged me to do, is to wait till the loading dose of vitamin D is finished, before looking at any further testing. My current symptoms are pain across my neck, shoulders, and arms, plus fatigue. GP seemed confident that the vit D will lead to a reduction in this pain. He said it could be months before I feel better, however.
So currently, I am taking 20,000 iu of vitamin D, twice weekly.
I am also taking 100mcg of vit K2 MK7, daily.
Next week, I plan to introduce a daily dose of magnesium malate - 400mg.
The week after, I will introduce the selenium - 200mcg, daily.
If I decide to go ahead with further testing, privately, would I be looking at specific ones for perniceous anaemia and coeliac?
He has confirmed that he cannot re-test Vitamin D at end of loading dose, as the NHS lab in our area will just not do this.
Not really surprised, they mostly wont do it because they say it's an expensive test. It's essential that you get your new level after the loading doses so you'll need to pay for the test, £29 with the link I gave you.
If I decide to go ahead with further testing, privately, would I be looking at specific ones for perniceous anaemia and coeliac?
Medichecks does the MMA methylmalonic acid test.
SlowDragon will be able to comment on coeliac testing, it's not my "thing".
Thank you. I will do that and get back to you with the results, for further guidance around what level of vitamin D supplement I will need to continue to take.
I had a look at the Medichecks MMA test - it's expensive, but I don't think I'll be happy unless I get id done.
I received results of MMA test from Medichecks, today:
MMA : CREATININE
23 Jun 2020
4.4
mg/g crea
< 3.7 R
Doctor's comment:
You have a high level of methylmalonic acid, your previous vitamin B12 level was towards the lower end of normal . This means that vitamin B12 deficiency is possible, and that you should arrange a test of your full blood count, intrinsic factor antibodies and gastric parietal cell antibodies to assess whether pernicious anaemia is likely.
What is this actually telling me - surely it's not a case of suggesting yet a further blood test to confirm/rule out perniceous anaemia!
Actually, at the head of the report, it did state that I should see my GP. It's all going to be that bit trickier just now, though, as discussions needs to take place on the phone. I can almost sense the resistance I'm going to be met with - and I'm desperate to move ahead with this.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Thank you. I have a telephone appointment at 2 o'clock. I've sent blood results and some info from this thread by email to GP practice, to help the discussion.
SlowDragon - I forgot to ask about Coeliac blood test, but will do that when I speak to GP about results of tomorrow's test. I'm going to have a read around Coeliac disease, now.
Thank you so much for such a detailed - and swift - response, with links. A lot of information to take in; I'll have to read through it a few times and formulate my plan of action!
I'm also pretty annoyed about the incorrect info from Medicheck, since I paid £101 for it
If you have to have a telephone appointment, I would send the test results and any other information either in an email or post it so the GP has it on hand when you speak to him.
To be honest, their comments are usually pretty rubbish, they're not worth having, members can interpret results much better!
If you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thanks, SlowDragon. I looked through all of the external links you listed. Only one of them linked to a study, and that study was on 24 rats and was conducted in Iran 20 years ago. What I'm looking for are details on a human study showing that low stomach acid is often associated with Hashimoto's. Do you know of one?
I was not aware i had Hashimoto's. GP - and endocrinologist that i saw, privately, following diagnosis - said it was irrelevant as treatment would be the same.
Do you think the vitamin D deficiency could have been present for years ... and could it, therefore, account for the symptoms that GP has said are caused by fibromyalgia?
Medics dismiss the autoimmune aspect of Hashimoto’s as irrelevant....probably because they don’t understand it
There’s masses you can do to help improve your symptoms
Regularly retest vitamin levels
Frequently Hashimoto’s patients need to supplement virtually continuously to maintain optimal vitamin levels
NHS will only test for, or treat deficiencies
We need optimal vitamin levels....that frequently means self supplementI get
Strictly gluten free diet and/or dairy free diet often helps or is essential
Getting levothyroxine dose fine tuned
If Ft3 remains low and some symptoms still a problem, after all these steps...then look at getting small dose of T3 Prescribed by endocrinologist, alongside levothyroxine
Vitamin b12 deficiency can also cause loads of problems. Ask to be checked for vitamin b12 deficiency. Do not take supplements beforehand. Get MMA tested (go or medichecks), and antibodies. Then ask gp for b12 injections.
I had symptoms of fatigue, brain fog, low mood and muscle/joint pain with a vitamin D insufficiency which eased once I started taking high quality vitamin D with the cofactors. As you have a severe deficiency it is very likely some of your symptoms are because of it.
I think many of us have or are experiencing what you are going through -only thing I would add to already brilliant advice is that doing an e -consultation via your surgery might produce a better reaction
where I live we have all been astonished by the more attentive and sympathetic attitude we have subsequently received from our hitherto dismissive GPS
So might be worth a try as I suspect ‘others’ will read your comments before forwarding for action -
(hope you get the vit D injections they did help me)
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Help with Medicheck results please
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