Seen my GP today following the confirmation that I'm deficient in D3. RNHRD in Bath advised that I take 50,000 iu weekly for 6 weeks (x2 25,000 iu pills weekly).
I asked my GP whether, and at what point I'd need re-testing to see and establish my levels and also to determine the proposed maintainance dose. The response I got was not what I expected!
She told me it was unlikely as the test was expensive at £100 and she was surprised I got tested and it was agreed. I was stunned. It was actually me that requested it as I had so many of the symptoms and it was my own GP I asked. However, it looks as though RNHRD has paid for it as they initially tried to take the blood but couldn't get a vein. One of the nurses at my surgery managed to do it.
So, how will I know what impact the D3 is having if I'm not re-tested in a couple or so months? I feel let down and angry 😠
Written by
tigerlily72
To view profiles and participate in discussions please or .
I’m so sorry you have been so ill from my your d3 deficiency. Like you I went for weeks then dropped to 1000mg weekly for maintenance.
I’m across the pond and we have individual insurance coverage which is different from yours. I’m amazed that you have so many problems getting testing or approval, I’m sorry for all your stress with everything. 🤗
Thanks for your kind words. I'm going to look at buying my own D3. I've posted on another forum and been told I can get a private test for around £40. The test however, goes to an NHS lab. So I've no idea where my GP got her figure of £100 from. Not sure if I should challenge (politely) or not, especially as I'm a UK tax payer and pay for my prescriptions (I don't get them free).
I pay for mine too but the OTC supplements are cheaper than the prescribed ones over here. I’m a shut in and rarely see the sun because I’m allergic to everything outside. I was also told to take a good calcium tab and take it with d3 is necessary because they work off of each other to Be affective. Bring sick sure isn’t any fun...it’s hard work battling to get better 😓
Keep your chin up and be positive,😊 rant when it’s needed😡🤯then surround yourself with people who love you and support you too. 💗
Hi, I was given vitamin D the same dose as you. I was told that it wouldn't be necessary to retest me as 20 mins a day in the sun is ample to keep your vitamin D at satisfactory levels. I purchase my own from Asda. In the summer i take one every 3 days but take them every day in the winter months. I was suffering alot of pain in my joints and ligaments as I have fibromyalgia and arthritis but i was amazed how taking vitamin D really helped. Hope this helps x
I requested a test from the NHS and was refused. I had it done through Medichecks as part of a thyroid check including B12, Folate, Ferritin, Vit D. Result came back 17.9 deficient. I supplemented daily with 10,000 Vit D3 soft gels, Vit K2 and Magnesium Glycinate. These three things work synergistically together. The K2 diverts the calcium in the diet to the bones and teeth and the Magnesium locks it there as well as being very helpful with digestion and pain. Our bodies need daily not weekly nutrition, after all you don't put a gallon of petrol in your car, expect it to run beautifully for a hundred miles, then put another gallon in. Lol!
In my experience, GPs demonstrate very little knowledge of nutrition and vitamin / mineral importance beyond telling you to 'eat healthily, eat less, exercise more' . . . . . . Having done my own research and read books written by people who have studied nutrition, it has helped me get my life back. I went from being bed bound to being able to be independent and have only 25% of the pain I did have. I am now able to contribute to the world again after Drs gave up on me.
Since you took the Medichecks thyroid plus vits , 11 tests, I am glad to see you were very proactive to stop fibromyalgia diagnosis ruin your life- how were the thyroid results by the way? Keep trying to get Fibromyalgia forum members to look at Thyroid UK forum too....as strongly believe they have answers / regimes to many fibromyalgia problems!
I was told I had M.E and Fybromyalgia, oh and let's not forget depression! I never believed I had depression but this was what all the doctors in my surgery focussed on to the exclusion of everything else. I explained that I feel a bit low due to being so ill but they wouldn't listen. What's more as I deteriorated they referred me to a psychiatrist who also said I obsessed about my health and was depressed.
My private tests caught me on a Hashimotos swing though TSH was still above range. But previous tests have been the other way however Drs only look at TSH, ( my medical records show that my thyroid has been struggling for many years but they ignored it even though nine years ago, they added Hypothyroidism to my records. Since then I have been left with no medication from the NHS.
I do believe that a high proportion who struggle with Fybro have thyroid problems and it is all too easy for Drs to say 'it's Fybromyalgia' or 'well, you are not young anymore' or 'you must be depressed'.
Forme, I weaned myself off all my Pharma drugs and as time went by, began to feel better and better. I self medicate with NDT, eat very healthy with good fats (Drs say cut out fat, do more exercise!) plenty of protein but less complex carbohydrates, now gluten free, wheat free and working on dairy free, improved my vitamin levels, drink lots of water and cut down considerably on sugars.
The standard treatment for thyroid issues if you even get any treatment is an absolute disgrace. Drs know very little about it but even more worryingly, the Endos know very little. They either don't know or don't care. I have seen three now and all three have made massive mistakes and made me even more ill. The last one recommended to my Dr that I stop taking adrenal support and NDT and lied in his report saying I had no auto immune issues. I am better off on my own, at least that way, I stand a chance!
Yes..I know the feeling. I have seen Vit D regularly not tested as costly, but I doubt that much! Your doctors' diet tips are even outdated re fats, never mind good thyroid health! How / where did you get NDT- perhaps you could pm me. I am trying adding T3 in 2 small doses per day to levothyroxin, feel much better but rather erratic BP/ pulse perhaps as T3 spikes.
You may be in a better position than I am Judith, as I cannot get T3 or even inadequate T4 from GP or Endo. I had to go to private Dr and pay for it though I wish I knew sources that were cheaper as it costs a lot.
Hi furface thank you for that post I have took myself of to the health shop and am gonna give what you say a go I'm still able to work but it is getting harder each day so if I can make a difference even a small one from the info I get here it's worth a try fingers crossed it helps xxx
Hopefully, one little difference will lead to another little difference and with research, you'll be able to improve . . . By changing almost everything I was previously doing, I have improved. (Beware artificial sweeteners, they are even worse than sugar, Google toxicity artificial sweeteners, very informative x
I realised that a while ago everything I have is sugar free so have made some big changes there as well as dairy as I have noticed that irritates me a lot xx
X still on the subject of sugar, I interesting that when something is promoted as sugar free, it nearly always has artificial sweeteners in, when something says fat free or low fat, it nearly always has artificial sweeteners in and unbelievably, some pharmaceutical drugs that are meant to be swallowed with water ALSO have artificial sweeteners in! They are everywhere and most people think they must be alright or the food industry wouldn't allow them to be sold. Unfortunately there is massive conflict of interest, lots of profit to be made from foods that are 'claimed' to be slimming and better for us when they actually cause more problems particularly for diabetics 🙁
artificial sweetener is not sugar, but the warning is more about they don't have to mention natural sugar. "No added sugar" means just that, and "sugar free" is allowed to have up to 5%. That's ok if you only have jam once a week but . . . .
And yes, its also true of fats and salt.
I remember someone selling water as being low fat. Well it is, but do you really need to say it?
It starts to get ridiculous at some point . . . . I picked up up a bag of nuts the other day and it said 'may contain nuts' . . . . . Doh, do they think we are all stupid . . . . Answer probably yes! And today, a packet of biscuits said 'serving suggestion: arrange on a plate' . . . . OMG . . . . How much did that person get paid for thinking that one up, lolololololol 😂😂😂😂😂😂😂
The world has gone mad, I feel, lots of importance placed on all the wrong things whilst the really big things get ignored, like anonymity given to criminals but not to victims . . . . . It's all ass b. Cowards! (I didn't write that, the spell checker did! Meant to say ass backwards! 😂😂😂😂😂😂😂😂😂
I experienced a similar thing to you, I was diagnosed by rheumatology with fibromyalgia and severe vital D deficiency Osteoporosis Malaisa they prescribed the very high dose vital D for six week and then did a retest soon after of course it came back OK so the consultant signed me off. That was 5 years ago and despite having symptoms again I've never been prescribed the maintenance dose. I'm very confused as my husband is prescribed vital D regular and was never deficient in the first place but suffers with depression. I've lost faith in the NHS. Feels like medical neglect to me on their part. Shame most of us haven't got the energy to challenge them.
This reference may be of interest to you and others with "vit D" issues:
fearlessparent.org/suppleme... - importantly, the KNOWN biochemistry is saying that measuring only the metabolite known as calcidiol is not likely to be enough for ALL of the population.
The level of the metabolite this is converted to ( - known as calciTRIOL) is reported to be important in a sub-group of the population - those with signs of chronic inflammation-causing disease processes, which would include conditions typically seen as FM, for example - & many others too !
Wow what a fascinating article. I had to read it twice to get it, I'm not the most academic of people but when I was tested after supplementation they said my calcium levels had gone too high and yes my inflammtion was much worse, my joints were like concrete. I noticed in another article recently they have started looking at the impact of imbalance of gut bacteria in Parkinsons and MS patients. Every day is a school day still so much to learn about human biology. Thanks for sharing the info.
The given biochemistry is CORRECT, although (sorry to say) I can't take credit for it ! But how is our UK medical profession SO dumb as NOT to recognise it ? ? ? How ? !
Dumb, dumb, . . . . & dumb ! Never thought I'd legitimately be able to say that ! ! !
Q: So, what will you do NOW, Pip ? ? ? What will YOU do ? ? ?
What Drs don't seem to realise is that their usual once a week dose of Vit D is not enough. If you are deficient, you need it everyday along with K2 that diverts calcium to bones and teeth and Magnesium which is so helpful for pain. Once your levels are high in the normal range, that is when you notice improvements. Under the current guidelines, it seems as though Drs prescribe just Vit D for two months but do not test again as it is too expensive and so levels slip down again.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Vitamin D
Costochondritis/Fibromyalgia advice
BIG FAT NO FOR MY D L A CLAIM !!!!!!!
Unexplained bruising either side of sacrum
Only just recover 
