Vitamin D Deficiency

Lastest blood test show I have low vitamin D (25) so have been prescribed tablets to take for 6 weeks. My TSH is normal (3) but I am still experiencing alot of hypothyroidism symptoms. Could this be due to my Vit D or my thyroid. My doctor had said my thyroid is normal and won't do anything else. Is there anything I could push for (tests, Meds etc.) That would help.

I am beyond fed up, feEling like a zombie everyday, in so much pain with my legs and feet. I'm only 20 and it is really starting to effect my social life, uni life and everything in between. I feel life I go to sleep tired and wake up even worse.

Any advice/help would be greatly appreciated. Thanks in advance 😊

36 Replies

oldestnewest
  • Also forgot to say (brain fog as per) the DOctober refused to give me any pain relief because of my age, any advice for what else could relieve would be great.

  • My new doc thinks my pain may be fibromyalgia. She will look over my bloodwork and may prescribe Cymbalta for the pain which should help my newly diagnosed peripheral neuropathy as well. Waiting!

  • I was wondering about that but they basically said I'm too young..vthere is a link between fibro and hypo I believe

  • Hi Serendipity,

    Maybe your diet could be playing a role. I have done a lot of reading lately and it seems that a lot of people with Thyroid issues also have some form of gluten intolerance/sensitivity which can lead to mineral deficiencies, especially for the fat soluble minerals.

    Have you been tested for Hashimotos or celiac? Do you have any known food allergies or sensitivies? In any case you can try some dietary changes to see if this helps.

    Dr Westin Child's has a great article and YouTube video about the different diets for Hashimotos patients. Even if you don't have Hashimotos it might be worth considering going gluten free because it sounds like there might be some inflammation going on.

    Check out the article:

    restartmed.com/hashimotos-d...

    I hope this helps!

  • I haven't been tested for hashimotos but I have for coeliac many times and it's normal. I am mostly lacto free as although not intolerantI have noticed that my GUY problems aren't as bad when being lacto free.

    Thanhs,

  • You may well have non-celiac gluten sensitivity, which can cause all kinds of health problems including fatigue and brain fog. Try weaning off over a couple of weeks and see if your symptoms improve. You could try an anti-inflammatory diet like the AI protocol to improve your gut function:

    thepaleomom.com/start-here/...

    Try to eat well, lots of fresh fruit and veg, and try to reduce stress and make time for relaxation. Also worth asking GP to test for B12, iron, ferritin and folate. If you have a copy of results post them in a new message and members will comment.

  • I had my B12 tested and it was 419, and folat as 5.2 not sure if this is normal of not but my doctor was happy either those results.

  • Many people feel better with a higher B12 around 900. You could try something like this one which includes B12 and B complex.

    uk.iherb.com/pr/thorne-rese...

    Do you know your ferritin level?

  • Serendipity_28 Thorne Basic B is a good B Complex, but the 600mcg B12 it contains is nowhere near enough to raise your B12 level of 419. You would need Solgar sublingual methylcobalamin lozenges 5000mcg daily and when the bottle is finished you should then take their 1000mcg dose as a maintenance dose. You should also take a B Complex alongside it to balance all the B vits.

  • My daughter has CFS and all the same symptoms as you. She had a big improvement in fatigue and brain fog when she gave up gluten, and improved again when she gave up grains and sugar.

  • Hi I had similar problems last year I was tired lethargic etc and I had a negative vitamin d reading doc put me on 6wk high dose vit d tablets. Then they were stopped not had them since.summer helps as vit d can be absorbed via the sun plus u don't ache as much when it's warmer.I've just started taking vit d suppliment as it's good to ward off colds and I've just had 1. The other symptoms sound like u could have m.e. ?there are no tests for it but ask gp for more blood tests after u have finished course u should start to feel better by then.but if not go back ...hope this helps .

  • Just saying the other symptoms are totally thyroid too bellemia...

  • Sorry but what's M.E? I do normally take an over the counter as ito often low

  • You will find that and many more abbreviations and acronyms here:

    dl.dropboxusercontent.com/u...

    ME = Myalgic encephalomyelitis

  • Hi Serendipity_28,

    Well your THS isn't normal for someone who wants to be feeling well. I feel horrendous when mine is at 3, exhausted, can't get up, brain fog, pain...

    We need our THS to be under 1 to feel well so you need an increase in meds.

    Also Vit D deficiency will be making you feel awful, could answer yourpain in legs and feet although have they tested B12 too as very likely you'll also be low in this? I'm guessing iron would have been done?

    What dose of Vit D have they got you on? My Dr put me on 800iu butafter a few months and watching a specialist talk about vitD ive bought some high strength (5000) and am feeling much better on them 😀 6 weeks will not be long enough to make any difference do you need to stay on them!!

    Have you had your thyroid antibodies tested? You need to know if you have Hashimotos Thyroditis. Auto immune(very common) and there would be certain things you'd need to do. How is your gut? Do you have any problems there?

    Where abouts are you at uni? Was just wondering as if your Dr isn't helpful you may need to change.

    Good websites for info.

    Chris Kresser

    Izabella Wentz

    Dr Datis Khazzarian

    Thyroid UK!

    Although if you're at uni I'm sure you have a lot of studying to do!

    You could get a copy of your last bloods(ask secretary at Drs) then post on here for advice.x

  • Hi, I had my B12 and folat tested which came back as 419 and 5.2. My doctor was happy with these speople no action has been taken.

    I have had bad GI issues ever since I was firstdiagnosed (4 years ago) including cramps, nausea, between diarrhoea and constipation. I also get a lot of bad gas, particularly after food. I haven't had antibodies tested, but I will ask next time I'm there.

    I am on 20,000 iu of Vit D a week (I take 2 once weekly). I do take an over the counter Vit D normally.

    I wasn't sure whether i needed to push to see an endocrinologist?

  • Great re Vit D. 😀

    I'd guess you may have Hashimotos with your gut issues so give gluten free a go. I guarantee cramps and gas will be better and any bloating. These foods are creating inflammation in your body which you need to avoid. Once you get your head round it it's really ok. Lots of good gluten free stuff now. Schar stuff is good. Can give you a list of things that are good if you like?Also casein in milk looks like gluten and the thyroid so initiates the body to attack the thyroid. Almond milk is a great alternative.

    If you do have a Hashimotos there's other things to learn but first give gluten free a go until diagnosis.

    There's a big link to Epstein barr virus, h pylori etc so you could ask for bacteria testing.

    Try taking a good probiotic, I'm taking PhiNaturals probiotic 10/30 which seems to be good.

    Florastor and culturelle are meant to be good although florastor is Saccharomyces Boulardi which gives me thrush but you may be ok!

    Definitely push to see an endocrinologist, won't hurt and you may get good help. If so ask then about T3 and NDT as better thyroid med options for a lot of us.

    Endo may check your adrenals too if you ask as can also be affected and as your at uni I suspect there's stress.

    Tumeric, cinnamon and ginger are good anti inflammatories. I chuck in a smoothie every morning with a banana, blueberries bit of spinach, and whatever healthy stuff I have, chia seeds, spirulina...

    Starts the morning well and is good for gut.

    Just one other thing, alcohol is fairly bad. Not saying cut out as your at uni! Haha

    Sorry for rambling, hopefully you can understand it all.

  • Hi,

    I follow a lacto free diet atm which helps a bit and do follow slightly gluten free but not completely. I will try to do it completely so a list of good things would be helpful 😊.

    What would they be checking for when checking my adrenals? I often have bladder infections and pain at the sides of my lower back (not sure if that is anything to do with it). The doctor has never checked them and just said they dint know what it is and out the pain down to my thyroid.

  • Adrenals are situated on top of the kidneys.

    hypothyroidmom.com/cortisol...

    Link about cortisol and adrenals.

    There's also a link with candida so could be a cause of bladder infections, I suffered terribly with them at your age. Dr Amy Myers has info on Yeast and autoimmunity.

    With Hashimotos bring auto immune there's a link with a lot of things! It's like curing each bit of the puzzle until you find your root cause.

    I'll dig out list of gluten free stuff I'm sure that will help. You sound like your on the right track, they do need to up your meds though as you will not feel well with a THS of 3.

    Read lots, eat healthy, sleep well and take your vitamins and you should hopefully see a difference.

  • Thanks so much. It has been very helpful 😋

  • 👍🏼

    Can't find gluten free list but I'll do another when have a mo.

  • Bit American but might be some useful info in here.

    Haven't forgotten about list!

  • The lower limb pain is due to being vitamin D deficient. The fatigue is due to both.

    What does supplements did he put you on in IU? As if the doseage is too low your symptoms will not go. You want to end up with a vitamin D level of around 100nmol/L

    In addition you do want an increase in levo. You want your TSH to be around 1. However until your vitamin D level is over 75 you probably won't notice much difference.

  • Have you had blood tests for iron and ferritin? (I had a quick look at your other posts and I cant see any comments on iron/ferritin results)

    If you are low in iron and ferritin these can give you symptoms for tiredness and muscle aches and most of us with thyroid issues are low. You need decent levels to feel well and for your Thyroid/Thyroxin to work properly. If you have results post them on here for comments. If you are within range but at the bottom of the ferritin scale the Dr will say you are fine but to feel well you need it higher up the range for symptoms to stop.

  • Your TSH is in 'normal' range but you are not 'normal'. With hypothyroidism the aim is a TSH of 1 or lower to feel well. Ask GP for an increase and email louise.roberts@thyroiduk.org.uk and aks for a copy of the Pulse Online article by Dr Toft (ex President of the BTA) who states how low our TSH should be to feel well and highlight points and show to your GP.

    Doctors are the most poorly trained in treating patients who are hypo in that they bleieve anywhere in the normal range is fine - untrue as you know too well.

  • The first thing I would suggest is that you ask the receptionists at your surgery if they allow patients to see their blood test results online. If they can be seen that way (most surgeries don't seem to have it set up), then you will need proof of identity with a picture to get the codes you need to register online. It would be worth doing.

    If you can't see test results online then ask for paper copies of your results. Expect to have to pay a small charge for paper and ink. It would be worth asking for all the results they have from the year before your diagnosis onwards. Make sure the reference ranges are given as well. Start keeping records and don't lose them. Each time you get your thyroid function tested or nutrients tested, note down what your symptoms are at the time of the test. You need good information if you are going to manage your condition correctly.

    --------------------------------------------------

    Your 20000 iU vitamin D per week is not enough. It is less than 3000 iU per day. One other point - you might feel better if you took the two doses you have on different days rather than taking them together. I also think you should buy some vitamin D to add to the dose you've been prescribed.

    Buy this product or something similar :

    amazon.co.uk/NatureWise-Vit...

    What you should buy is 5000 iU vitamin D3 (NOT D2), in olive oil. If you take the prescribed vitamin D at the weekend and then add 1 a day of the 5000 iU vitamin D during the week your level should rise at a decent rate.

    Vitamin D can rise to toxic levels so testing is essential. Ask your doctor to re-test you in about 3 - 4 months. Or you can pay for finger-prick testing through the post :

    vitamindtest.org.uk/index.html

    Once your vitamin D is at a sensible level (about 100 nmol/L - some people go as high as 150 nmol/L) you should reduce your dosing to 5000 iU every other day to maintain your vitamin D at an optimal level.

    -----------------------------------------------------

    Since you have been diagnosed as hypothyroid you are entitled to free prescriptions. Did anyone tell you that? There is a form you need to ask for which your doctor must sign and then you send it off and get an exemption certificate which you must present when you get prescriptions.

    Link : nhs.uk/NHSEngland/Healthcos...

    Look at the section detailing medical exemptions. To apply for a medical exemption certificate ask your doctor for an FP92A form.

    The condition you have is referred to on the form as myxoedema (an old-fashioned name for hypothyroidism).

    ------------------------------------------------------

    Your TSH is too high, showing that you are under-medicated. Hopefully your doctor will take notice of the article that shaws mentioned above, which you should get a copy of.

    If you still can't get a higher dose of meds then either see a different doctor at the practice or change surgeries.

    If the worst comes to the worst, and you can't find anyone who will raise your dose you could ask for a referral to an endocrinologist. But with the NHS in such dire straits that could take many months.

    The other alternatives are to pay for a private appointment. This is not guaranteed to get you a higher dose either. The doctors people see privately are usually just the same doctors that work for the NHS, and they work to the same guidelines. To improve your chances of getting a helpful doctor ask Louise Roberts (email address in shaws' post) for the list of thyroid-friendly doctors.

    The alternative is to self-medicate. It is possible to buy thyroid meds online. This must be done carefully - fakes and con-men abound. If you decide to self-medicate, when the time comes ask about it in a new post and ask for reliable sources. There are other kinds of thyroid meds available other than Levothyroxine, and many of us do better on the alternatives. But you would need to research what they are and how they work before you bought anything.

    ---------------------------------------------------

    I forgot to mention... When taking vitamin D supplements the body's absorption of calcium from the diet increases. You want that calcium to go into bones and teeth not into your soft tissues, and to make that happen you need Vitamin K2 and magnesium, both of which are available on supplements sites without prescription.

    There are many different kinds of magnesium available, you should choose the one that appeals to you most - make sure it is one of the ones people can actually absorb :

    naturalnews.com/046401_magn...

    globalhealingcenter.com/nat...

    --------------------------------------------------

    If you haven't already been told about this, you should be taking Levothyroxine with water on an empty stomach either first thing in the morning or last thing at night. It should be taken 1 hour before or 2 hours after food and supplements, but for calcium, oestrogen, vitamin D and iron supplements (if you take them) the gap should be 4 hours.

    ------------------------------------------------

    Someone mentioned ME earlier on. Please don't mention this to a doctor. Getting a diagnosis of ME on your medical records is something to be avoided like the plague. There is no treatment for it, and once you have that diagnosis on your medical records every symptom you have will be blamed on ME and you will get no help or treatment from the NHS whatsoever.

    ---------------------------------------------------

    Have you been tested for coeliac disease? Do you eat gluten? Ask for testing for coeliac disease if you haven't already been tested.

    Even if your tests come back negative, going gluten free is well worth it for anyone with a thyroid condition. Try it for three months. If you get no benefit then you can go back to eating gluten again. I don't have coeliac disease - I was tested and found to be negative - but I got lots of benefits from going gluten-free.

    ----------------------------------------------------

    Hypothyroidism reduces the amount of stomach acid that people produce, and this is one likely cause of your gut problems. (Although eating gluten may be a major contributor too.)

    It may seem strange to say so, but low and high stomach acid causes similar symptoms. For info on how to deal with this, read each of these links in order :

    scdlifestyle.com/2012/06/hy...

    scdlifestyle.com/2012/03/3-...

    scdlifestyle.com/2012/03/ho...

    scdlifestyle.com/2013/10/4-...

    ---------------------------------------------------

    It may sound as if you'll never learn all this stuff, but it is worth persisting. Being young, as you are, increases your chances of getting well with the right meds and supplements. You won't have developed all the problems and acquired all the damage caused by long-term untreated hypothyroidism that many of us have.

    If you want a good book on the subject of the thyroid then this is the one to start with :

    amazon.co.uk/Your-Thyroid-H...

    There are lots of entries for that book on Amazon - check carefully to find the cheapest entries - and you can buy it cheap if you buy a used one or buy the Kindle version.

  • I was v poorly when my b12 and folic acid were at yr levels. Never mind the gp saying theyre ok get supplements yrself. I get 5000 sublingual methylcobalamin form of b12 (solgar or jarrows fm amazon) and supermarket folic acid and multivit(for the extra b vits).

    Also a tsh of 3 could also be making you v poorly. Id ask gp to do further testing (t4 & t3)

    Keep asking questions and getting info fm this site and you will improve. (Ive come a long way) Youre at an important, busy and stressful time of yr life so dont give up getting help, things can and will get better. X

  • I agree with what others are saying here about Vitamin D being essential for feeling well, and uptake of thyroxine. I was diagnosed as Vitamin D deficient last year after two years of feeling very hypothyroid but with good thyroid function blood tests. I also had pains in my leg bones too. My Vitamin D was down to 17 (range 50-200), and i was given 10,000IU/day for first month (D3), then 1000IU thereafter maintenance. I started to feel a little better within a few days TBH, but took a month or so to feel 100%. Hope this helps :)

  • My husband and I have taken Vit D for about 8 yrs we have a 1000 every day. We were told BT a consultant everyone in this country should supplement Vit d because we can't abosorb it from our food enough with our sunshine. I have been hypothyroid fir 30 yrs and feel much better due to the supplements I take.

    Best wishes x

  • Thank you.. I do take an over the counter one normally which is fine which is why I dint think all my symptoms is due to the vit D

  • My synthroid attacks the bones with osteoporosis. So I take citrical with added D and a separate D with 1000 iu's daily.

  • There's further Vit D info on my post -

    healthunlocked.com/thyroidu...

    In Britain you won't get sufficient Vit D from autumn to spring. And then, in the summer, unless you expose your back and limbs to the sun and leave off the sunblock lotion, you won't get adequate Vit D (I'm not suggesting sunbathing/sunburn).

    We all absorb Vit D at different rates. There are also the co-factors to consider. It's best to take Vit D with fatty/oily foods.

    Selenium 200 mcg is required for thyroid function... and as a protective measure against cancer and other conditions.

    Vit B blood test result needs to be at least 500.

    🤓

  • I've just asked about amount of supplement for vitamin D folk here recommend as there seems to be conflicting advice out there. I'll let you know what happens

  • Believe me, i had a two year battle with my GP as thyroid bloods were normal but I felt awful and was going down hill fast. It was all down to low Vitamin D which meant my body couldn't absorb the thyroxine: it just stayed in the blood making the tests look good. The doses I had (I stated on your other post) are in line with NHS recommendations. Get that D up and you will feel loads better I am sure :) (I certainly did)

  • How quickly did your start to feel better.. I only have 2 more doses left and I dint feel any better

  • To be honest, I felt a difference within a few days :o Bearing in mind the starting dose of Vitamin D I had was large (10,000IU/Day). A few more weeks to feel a lot better but months for all the Hypothyroid symptoms to fully disappear as i had been under-medicated with levothyroxine for about 2 years previous due to my GP :( I now take 1000IU of vitamin D a day, and will continue. I really think you may need the large dose to start off to bulk up the level of Vitamin in the body myself :)

You may also like...