First Post

First Post

Hello Everyone,

Great to hear any advice about my BH results and what strength/recommended brand Vitamin D tabs to buy.

Visited my GP with back/walking problems and fatique. Had three appts with physio, an exercise sheet, suggested it could be stenois of the spine and asked me to attend a 2 hour back pain management lecture and that this could take a very long time.

As l wouldn't have been able to sit there for 2 hours at that time. l didnt go back….

After researching online about B12 deficiency, finding this site :) possible neuropathy and the likelihood of not getting very far with my GP, l started using a B12 spray with a multi vitamin and improving my diet. After some improvement l went back to my GP for a B12 test and explained l was supplementing.

GP rang last week to say my results were normal and Serum B12 in range 450 -(180 -900) but that my cholesterol was high - 7 and sent a statin prescription to the chemist for collection.

l have since had a blood test from BH and my results arrived today.

(my sister is Hasimoto’s)

Thank you to everyone on this site for your help, advice and support on this forum :)

64 Replies

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  • The first thing to do is tomorrow morning first thing is ring up for an on the day appointment and see if the GP will prescribe you adequate vitamin D3. There is no point in paying for it if you live in an area where you can get a sufficient dose on prescription.

  • yes your right l will do that first thing!

  • Then tomorrow start a new thread stating your vitamin D result and range plus state what the GP gave you.

    When you do see your GP ask him/her to check the local NHS trust guidelines for dosing. (You can do this yourself by Googling.)

    Even if they can only prescribe you 800IU supplements they are allowed to prescribe them to you in amounts which means you can take 6-8 at a time. While this won't be enough for you at your level it will show how good or poor your GP is on vitamin/mineral knowledge. (Poor GPs tell you one is enough.)

  • Bluebug,

    GPs aren't restricted to prescribing 800iu. My GP prescribed 40,000iu x 14 days and 2,000iu daily x 8 weeks to correct vitD deficiency <10.

  • It's area specific e.g. CCG, healthboard, what supplements IU dosage they can and will prescribe.

    I got prescribed my vitamin D3 dose in 20,000IU supplements there as I know people personally who only got prescribed 800IU supplements.

    One of them is still getting prescriptions from their GP over 2 years later as they didn't take my advice to buy their own supplements as they were told to take 8 of them at a time, and this is a nightmare for them so they aren't compliant.

  • Bluebug,

    I didn't realise it was area specific. How peculiar!

  • Yep - it's due to so many people being found vitamin D insufficient and deficient in the UK. So to save money in some areas they will only purchase 800IU supplements.

  • Bluebug,

    The ProD3 I was prescribed was expensive but it corrected my deficiency in 10 weeks. That has to be more cost effective than writing prescriptions for paltry amounts of 800iu monthly or quarterly for 3 years.

  • Unfortunately budgets and prescribing in the health service make no sense.

  • You are welcome to Google for various NHS trust guidelines they are easily available on the internet. Most have nice flow charts showing how to diagnose and treat vitamin D deficiency.

    All they do as @Clutter alluded to below is test your vitamin D level and treat you based on that unless you are extremely lucky.

    I was one of the lucky ones mainly because the nurse practitioner who saw me decided to cover her back - my next stop would have been A&E as I felt so terrible and the GPs had ignored me after multiple visits. So I had liver and kidney protein/enzyme tests, ferritin, folate as well as a vitamin D and a full blood count.

  • Delicious21,

    Other than FBC there was no investigation to identify or exclude any conditions causing my vitD and folate deficiencies.

  • Delicious21,

    Nope, didn't check calcium either. I wasn't taking any drugs which deplete calcium.

  • Ive been taking 800iu vitamins d for 5 years and I have never had a bone profile or renal function test. In fact I don't remember being tested for anything other than RA despite having joint and teeth problems among other things. I just got told I have osteoarthritis and fibromyalgia and that they can't do anything for either.

  • I had to fight to get better treatment in rheumatology. One consultant told me I had fibromyalgia "because all 35 year old women have fibromyalgia". I burst into tears and a nurse came to ask if I wanted to complain. I just wanted a proper diagnosis. Eventually diagnosed with undifferentiated connective tissue disorder and, later, mildly underactive thyroid.

  • I had a fight on with rheumatology too but when I complained to PALs they promised loads of things that never came to fruition. I was told I would see an endo, a podiatrist and pain clinic but none of it happened. Like you Kitty1watson I just want to know what is really wrong with me. I still do! I was told at beginning of 2014 that I had inflammatory disease probably zero neg RA "fibro was the least of my worries"apparently! I was treated with DMARDs which made me worse and caused other health problems. Then a year later I was told without tests that my problems were all fibro related. I still believe there is something more not diagnosed possibly hypothyroidism but I am made to feel like a hypochondriac if I see any doctor and I get very anxious. I usually get asked to consider anti depressants. no thanks.

  • I'm sorry to hear you're suffering too. I actually feel a lot better now, having been on levothyroxine since the middle of January. I also put myself on a little NDT that I bought online and put myself back on the prog-only pill because I realised I'd stopped taking it not long after I started to be ill. So far, I've lost 21lb and feel a lot better. No overactive symptoms at all. Sadly my latest endo appointment suggested reducing the levothyroxine and I'm waiting for the results to see if my TSH is too suppressed. I tried arguing that I understood it was ok if T4 and T3 were normal but he just shook his head and said it was dangerous to have a suppressed TSH on its own. I even read a bit out from Dr Toft's book to no avail. Praying he doesn't change anything. First time in nearly 6 years I've felt like me (and looked like me! 14lb to go!) and I have a 17 month old to run around after. All my symptoms went away in pregnancy and my baby was born big which I understand can be caused by an underactive thyroid. So scared I'll go backwards if he changes my dose but I will just resort to buying medication online.

  • I'm sorry to hear you're suffering too. I actually feel a lot better now, having been on levothyroxine since the middle of January. I also put myself on a little NDT that I bought online and put myself back on the prog-only pill because I realised I'd stopped taking it not long after I started to be ill. So far, I've lost 21lb and feel a lot better. No overactive symptoms at all. Sadly my latest endo appointment suggested reducing the levothyroxine and I'm waiting for the results to see if my TSH is too suppressed. I tried arguing that I understood it was ok if T4 and T3 were normal but he just shook his head and said it was dangerous to have a suppressed TSH on its own. I even read a bit out from Dr Toft's book to no avail. Praying he doesn't change anything. First time in nearly 6 years I've felt like me (and looked like me! 14lb to go!) and I have a 17 month old to run around after. All my symptoms went away in pregnancy and my baby was born big which I understand can be caused by an underactive thyroid. So scared I'll go backwards if he changes my dose but I will just resort to buying medication online.

  • That's interesting. My rheumatologist consultant told me last week that no one should be taking more than 800 as that is sufficient. I've not been tested for vit D as far as I know.

  • If you aren't severely deficient or insufficient then no you shouldn't be taking loads of vitamin D3. Hence the blanket recommendation of 800IU per day.

    If you however have been ever diagnosed with either severe deficiency or insufficiency then yes you will need more than 800IU per day. Though some people get away with nothing in the summer.

    This is why people on here are told to get tested before supplementing. Then told if they are supplementing that they need to be tested regularly until their levels are adequate. Then tested a minimum of once a year for the rest of their life.

    When talking to medical professionals is always a good idea to ask what group of people e.g. healthy people, they are talking about.

  • When I was first put on vit d I already had osteoarthritis and blood test showed low vit d of 17 when I believe it should be around 70. Ive been on it since but never had a loading / higher dose at any time and at one point when I asked for repeat prescription the gp said I didn't need it because it was summer. I was refused it. The following blood test showed it had gone down to 24 so this proved that I did need it even in summer. I also supplement b12 and when seeing my gp in 2 weeks Im going to ask for blood test to check both again. I always seem to have to ask they don't offer otherwise.

  • It depends on the lack of knowledge of the GP. The guidelines in every area I've Google have clearly stated not to prescribe calcium unless the patient is tested as being calcium deficient.

    Therefore myself and other people I know haven't been prescribed it.

  • yes what was l thinking, l will ring drs for an appt first thing

  • The NICE and area specific guidelines I've seen all say don't prescribe calcium unless the patient is deficient in calcium.

    GPs who lack knowledge prescribe it anyway. There as those GPs and primary health prescribers who check their local guidelines don't, unless they have tested the patient's calcium levels and found them deficient. Most people are found to have vitamin and iron deficiencies in primary care not by specialists.

    I definitely wasn't prescribed calcium and neither were the other people I personally know who where/are vitamin D deficient.

    In regards to the doctor knowing the patient - my last GP practice knew me so well the GPs misdiagnosed me three times there as the medical student and nurse practitioner who didn't could diagnose me. Anyway on this forum being misdiagnosed isn't rare.

    And yes the vitamin D council is in the US and sells vitamin D, however their charts are useful to tell people how much vitamin D to take to get to the right level as many GPs will only prescribe 800IU when someone has a vitamin D level of under 20nmol/L. Incidentally they don't tell people to take more than 10,000IU per day however deficient they are, there as some NHS trust guidelines say is fine to take more than 10,000IU per day as a loading dose.

  • thats interesting, had a peridontist appt today, he said my gum issues were due to an immune reaction, also said some calicification of the teeth. so l am using a magnesium oil spray and trying to increase potassium if this will help or is related

    thanks for the information

  • The information on vitamin D3 is available via the vitamin D council website and grassroots health

    vitamin D council - vitamindcouncil.org/i-teste... US website use a calculator to do the conversion e.g. divide by 2.5

    Grass roots health - grassrootshealth.net

  • See my other reply.

  • I forgot to say collect your statin prescription but don't take it to the pharmacist until you have done research on how useful statins are particularly in women.

    Also look in to how under-medication of replacement thyroid hormones leads to high cholesterol.

  • thanks for all of the information bluebug, l wouldn't have had a clue about this!

  • I'm here because I was at a GPs practice who ignored my worsening vitamin D symptoms for a year and threatened to remove me from their books if I came in again complaining of symptoms, which were classic vitamin D deficiency symptoms.

    I was only diagnosed because a nurse practitioner decided to test me. I changed practices after I finished my high dose supplements as I didn't trust any of the GPs. It appeared I could only be diagnosed properly if a medical student examined me or the person was not a GP as it wasn't the first time they hadn't treated me properly.

  • Oh and if you are a subtle person make sure you add in a comment to the GP that next time a patient comes with back pain AND walking problems who has been very unwell or has a thyroid issue that s/he should check for vitamin D deficiency, as they don't want to be involved in causing a life altering injury to someone's spine.

    GPs were warned 3 years ago about vitamin D issues in the UK population but clearly you have a GP who has decided it is a fad. One of the symptoms of severe vitamin D deficiency is walking problems with bone and muscle pain.

  • The majority of people don't get their kidney function tested ever.

    One of the reasons I tell posters to go to their GP and then start a new thread afterwards to see if they have been prescribed enough is because if they are severely deficient like bigsky13 is they should be treated by their GP.

    However if the GP doesn't treat them - and their are posters who are deficient but their GP refuses to treat probably due to cost - then they cannot just live in pain, risking broken bones and/or bone deformity.

  • All doctors on the NHS are reputable as they are registered with the GMC but most in primary care never check renal function and prescribe patients vitamin D including at doses higher than the equivalent of 10,000IU per day.

  • You have had a different experience for loads of people both on and of this forum in regards to vitamin D.

    As I stated before most people are discovered to be vitamin D deficient in primary healthcare e.g. by a GP, practice nurse practitioner, practice nurse so all the primary healthcare professional does is follow the local guidelines.

    These guidelines are either from the local NHS trust or the CCG.

    As other posters have pointed out they never had their renal function or bone profile tested. This means their calcium level was never tested.

  • Other posters on this board who have been found deficient in primary care have relayed their experiences to you about what they have and have not been tested for. Are you discounting their experiences?

    If you are not, then you should be aware that GPs and other medical practitioners in primary care don't always follow best practice, and even when they do local guidelines covering vitamin D deficiency state that they don't need to test for renal function or do a bone profile in the first incidence.

  • Ive just finished a prescribed course of Vit D, you need to use the word loading dose, if they still dont get it ask them to consult with their pharmacist for the appropriate dosage. My GP prescribed the standard 800iu a day and I was so foggy I forgot to check what she was doing til I picked up the prescription! Rang surgery to advise and got a call back to say pharmacist had agreed to the loading dose and gave me 10,000iu twice a week for 6 weeks, just esiting to retest now to see where we are (my level was the same as yours). My loading doses were a pipette of oil without calcium but the maintenance tablets do have calcium.

  • l didn't expect it to be Vit D, all along l have thought it was B12, had no idea it could cause these symptoms. l have Rosacea and avoided the sun, but then l have only had a few episodes in the last few years and they felt like flares or Hives.

    Hope you are feeling better now.

  • Even if you hadn't avoided the sun due to being hypothyroid and the summers we have had in the UK, unless you went abroad for long holidays in the sun where you didn't always wear sun cream you would very likely be vitamin D deficient or have sub-optimal levels of vitamin D.

  • l am hypothyroid?

  • Unfortunately under the NHS you will not be treated until:

    1. You have had repeat test(s) where your TSH is quite well over the range e.g. 6 or even 10, and,

    2. The doctor can't blame your symptoms on vitamin or iron deficiencies.

    So point out to your doctor you are hypothyroid but don't expect any action as you are only just outside the range.

    If the GP does arrange a thyroid blood test for you then:

    1. Make sure you have the test first thing in the morning - make up excuses until you can get an appointment first thing even if it is 6 weeks away.

    2. Make sure you have fasted the night before -you can drink water

    3. Make sure you have stopped your multi-vitamin and any B complex vitamins for 7 days as biotin can muck up blood test results

    That way your TSH will be the highest.

  • how long did it take before you started to feel better on Vit D prescription and does this cause raised cholesterol, l have collected my statins but not started taking them yet.

  • If it works for you and you have been prescribed a sufficient dose it should take around 3 months. Though be aware at your level of deficiency you may experience bone and muscle pain while taking high doses of vitamin D as your bones re-mineralise. Taking the cofactors should help decrease the pain.

    Getting to an optimal vitamin D3 level can raise your HDL and lower your LDL. Whether it does or not depends on your own physiology and genetics as cholesterol is made in the liver.

    As I said you do need your thyroid test repeated to confirm if you do have hypothyroidism but the doctor won't repeat it for at least 3 months, so make sure you bring up this result with the doctor. Also state clearly your sister has hypothyroidism and you know it tends to run in families.

  • thank you bluebug and delicious21 and everyone that has replied. l am fortunate to have found this website otherwise l wouldn't have thought to have private blood testing done, l have felt so unwell and now l feel more positive that l will eventually start feel better again.

    hope l am posting in the right places, got a bit lost along the way:)

  • I am feeling considerably better, granted I have also been seriously beefing up my B12 and folate which were in range but only just. The improvement in fatigue is very noticeable, I am back to needing 8-9 hours rather than waking up tired even after 12 and drink coffee if I fancy one rather than practically mainlining it! I have also been taking the vit D co-factors magnesium and K2-m7 as advised by the forum. I was given roughly the same vit level advice as Startagaingirl listed below.

    I can honestly say that getting my vit levels right and pretty much optimally medicated (on levo) I feel positively human for the first time in a long time. But I still felt terrible when my levo was right but my vits were way out.

    There is light at the end of the tunnel, getting your vits right will hopefully get you feeling much better until you can persuade NHS to adress your failing thyriod - I dont have hashimotos either.

  • l haven't seen the Dr yet, he said all tests were normal apart from cholesterol, thats when l decided to do private testing. The results came through today. l will look that up :)

  • Hi - the previous posts seem to have got stuck down into the detail of vit d a bit. Yes you are severely vit d deficient and that will be causing multiple symptoms, for which you do need high dose supplementation along with vit k2-mk7 and magnesium. But on another point that hasn't been mentioned as yet, you are also hypothyroid as shown by the TSH result. This is a measure on how loudly the control centre in your brain (pituitary gland) is shouting at your thyroid to work harder and produce more hormone. The (dominant) hormone produced by the thyroid is called T4 and the available levels in your blood are shown by the free T4 number and yours is right at the bottom of the range. But this is a storage hormone that must be converted to the active one - T3 -and this is predominantly done in the liver. This hormone is the one that drives your whole system from your brain to muscles and organs to metabolism. The amount of this available in your blood is shown by Free t3 level. Yours is at a satisfactory level, but your thyroid is having to work too hard to produce this - as shown by the fact that TSH is over-range and you will be feeling multiple symptoms from this. You would be classed by NHS as "sub-clinical hypothyroid" and may well struggle to get any treatment with these numbers.

    Supplementing your nutrients to optimum levels will help relieve some symptoms and mean that your body will be able to make better use of the hormones you do have. Optimum levels are: ferritin - 100-120, vit d - 100-130, vit b12 1000ish, folate mid-range+. So you are less than optimum in all of these. There are many previous posts with comprehensive answers on levels of supplementation which you may find helpful - search in box at top right for "vitamins and minerals".

    To learn some more about the basics, have a look through our mother site - thyroiduk.org.

    Good luck

    Gillian

  • thanks Gillian good to know the optimum ranges, l will l look at thyoid UK and work on getting my nutrient levels up!

  • could you tell me what my anti-bodies results are? l don't understand it, new to all of this

  • Bigsky13,

    The thyroid antibodies are negative so you don't have autoimmune thyroid disease (Hashimoto's).

  • thanks for clearing that one up! l had just wondered as my sister has Hasimtos,

  • Just a note re your antibodies. Many years ago I had antibodies show up on a blood test (Nothing was done about it at the time) Further bloods showed negative to antibodies. I certainly had have had all the signs of Hashi's with it's fluctuating levels...think that is why it took another 10 years for me to get a HypoT diagnosis and treatment. I'm wondering if your negative result may not be negative at another point in time? And if it is possible for you to be Hashi's - but it is just not showing in your current blood test? Maybe Clutter delicious21 startagaingirl might know better?

  • UrsaP,

    Antibodies fluctuate so it is possible. It makes no difference to NHS treatment whether antibodies are confirmed positive or negative. Any treatment is for the low thyroid levels eventually caused by Hashimoto's. There is no cure for Hashimoto's but adopting 100% gluten-free diet may reduce frequency of flares, symptoms and antibodies.

  • Hi delicious21. I'm fine thanks, other than usual fatigue and aches and pains!! Getting worse!! Any suggestions for intermittent burning pain on outer right edge of right foot and sharp pains down left shin?? ? Driving me mad.... Any suggestions would be welcome (other than amputation!!)

    I think it is the fluctuating nature of Hashi's that is half our problem - takes too long to get a positive reading for HypoT. And hence further irreparable damage done, causing more long term problems.

    And although I know that Hashi's is incurable, it can help to know what we are dealing with - as Clutter says, if we know it is Hashi's, a Gluten free diet could help.

  • UrsaP,

    Check your ferritin, vitD, B12 and folate are good.

  • Suspect my ferritin is low, but need to ask for a blood test...thought it would be done automatically with FBC in last tests but not. Can't remember if recent bloods did B12/D levels - think I asked for at least one of them...must check. BrainFog!! Now where did I put results....

    Do take supplements of both D3/B12 - may not be taking enough?

    Thanks Clutter and delicious21

  • UrsaP,

    Write a post with the results and ranges and say how much you are supplementing.

  • I will Clutter but need to ask for ferritin bloods first - I did post my last lot think everything was 'within' ranges, Either B or D was low, Red blood was high. TSH was high and T4 low - expected t4 to be low, as on T3 only. Have since spoken to Dr P about my results too. Just Iron I think I need to sort...and check Vit B/D

    And thanks.

  • Hi delicious21 not on any antibios or statins etc. I do take bit b12 but only a small amount and not always regular. Regarding exercise...?? walk dogs and running around house when not on here....

    Been on here too long today...a 'tired' day...not feeling up to much else.

  • l dont think she has ever thought or knew about it, l will send her here:)

  • To be honest, I am not sure that NHS GP prescribes the right vitamin D. I had heard it was D2 they prescribed as it is cheaper, not sure. Vitamin D3 is what is needed.

    My bottle of D3 drops are 2000iu per drop and have lasted me over a year at £13+ for a bottle. Just pop drops on finger and wipe on inside of cheek or under tongue, absorbed through mucosal tissue. Nature's Answer D3 drops (amazon)

    Friend of mine just had slight pain in calf muscle, GP tested D and calcium amongst other things. D was 25. very low. Prescribed 45,000iu one dose per wk for 3 months. He was shocked so low and so does not feel enough and is inaddition taking 6000iu drops per day. But also always have serum calcium test taken if going to take vit D because in rare occurrences your body could be reducing vit D absorption because calcium too high. Vit D grabs on to calcium and so will absorb as much calc as available. This can be dangerous if calc high. Serum calc should be no higher than 2.5 no matter what range says. If calc ok then it seems you need to take high D3 to get it up to 125 min. if not well for any reason - then much higher to 150. But if taking vit D then absolutely need to take vit K2. to ensure calc is transported to bones and teeth and not soft tissue where it will otherwise gravitate to. See Kate Rheaume Bleue K2 and the Calcim Paradox, the little known vitamin that could save your life.

    Different countries, different normal ranges for B12. B12 has an effect on all function but particularly Heart and Brain and nervous system. Japan much more fwd thinking. B12 range 500-1300. Japan has significantly lower heart attack/disease and alzheimers.

    Dr Daniel Amen Functional Nutritional Psychiatrist (SPECT scan guy) looks at functional activity of brain before treating and reverses issues through diet and supplements states never be bottom of the class when it comes to B12, always be up there at the top of the range if you want a healthy brain. B12 def charity told me that if you have symptoms of any kind - you will not start to heal until B12 reaches a min of 1000 and much higher.

    Are you taking the statin? Results show no benefit to women, benefit to anyone disputed. See British GP (cardiology specialism) Dr Malcolm Kendrick on statins. should be you tube videos. Def a blog post - 'what really causes heart disease'

  • collected statins but not taking them. Will read the articles thank you.

  • Maybe bigsky you will find this excellent you tube lecture on Vit D interesting.

  • This you tube video lecture by Ivor Cummins may help provide info re statins/cholesterol debacle too. Could say learn and so know more than your GP but that wouldn't be difficult :) I think it is this lecture where he looks at effect on his own blood markers - so evidence based.

  • Yes please post again with the medication you are prescribed. My GP finally agreed to test my vitamin D and B12 levels. However the lab refused to do Vit D as in Kent it is considered not clinically indicated in Hypothyroidism. Now progressing to private testing as my folate was rock bottom! So I just need to see if there is a Vit D problem too.

    There is a postcode lottery with CCG's dictating what they will pay for in all areas of health. I am not sure if most people are aware.

  • Hi, Yes l will post my prescription on Monday. Incidentally, l had blood tests at the doctors recently, GP said all was normal apart from high Cholesterol, So l did private testing, fortunately chose BH +11 which includes Vit D test otherwise l would never have known.

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