hi again fairy ! ,
when considering what you should do with regards to Vit d supplemention , can I ask, do you have any gut malabsorption problems ( Crohn's ,coeliacs IBS, bile or gall bladder out etc, are you vegetarian). When a level as low as 20 arises , very often there will be other factors involved. It may be that your own genetic make up may reduce your ability to utilise the Vit D that your body encounters from all sources. Do you have any other specifically autoimmune processes going on, or possibly a long term glandular fever episode in your teens? ( Epstein-Barr virus). IF you don't want to disclose on an open forum , then PM me.
Do you suffer from, hyperparathyroidism, sarcoidosis, or granulomatosis , Williams syndrome or hypercalcaemia? ( these last 5 being contra indications of Vit D supplementation) unless with strict medical supervision available. They are very rare conditions.
For the time being , assuming none of these apply.
You have a decision to make ... are you going to stick strictly to NICE guidelines or not. By the way the treatment you have been given does not even reach those guidelines. You should be on more than 140,000 over 7 weeks, in fact double that would be more appropriate. However the latest Vit D research points to daily dosing being more advantageous. ( You will see the NICE guidelines are constructed mainly from the National Osteoporosis Soc. - where bone metabolism is the primary consideration. ) The level of 50 nmol/Litre being considered sufficient is again only for bone health. Vitamin D has many more effects other than bone health. Indeed , researchers have found that practically every cell in your body has a receptor, and 2000 genes have Vitamin D response elements ( 10% of your total genes ) within those cells.
In addition, following on from your initial loading dose , the NICE guideline suggests only 800 IU daily. Which, when taken by an averagely responding adult , over the long term, will raise their blood level by about 20 nmol/L. In your case , I would suggest that would be insufficient. Over the long term, with that regime , your blood level will be in the order of 40 nmol/L, still insufficient.
A loading dose commonly about 300,000 IU , will raise your blood levels, BUT , if your own metabolism requires say 2000 IU per day , then you blood level will inevitably fall if you are supplementing by only 800 IU per day.
The key point to understand , is What is your blood level We all have different responses to supplementation , by a factor of 6 to 1 . The fact that your level was 20 , means there is a possibility that you might be a low responder , or you may have absorption problems. The method of supplementation can influence your response, hence some of my questions above ! Maybe you just never get sunshine on your skin, or always apply suncream, ? Whatever the reason , you should be able to raise your level to over 100 , preferably higher.
I am sorry to hear that you are so badly affected by ME /CFS , by improving your blood levels of Vitamin D you will almost certainly improve things for yourself. In my opinion.
I would recommend that you have your blood levels measured , you can do it through your doctor , on the NHS , but they are quite reluctant to do so sometimes, especially if you have been treated. The assumption that treatment will definately make the necessary change to your blood level is not correct. The assumption that 50 nmol/L is sufficient , is not correct. Measurements can be made by several laboratories. This is popular, one of the biggest.
www.vitamindtest.org.uk/ . It is an NHS lab, a blood spot test kit is sent to you, which you send back to them, results are emailed to you within a week. Unfortunately , they do charge £28 if the test is not doctor ordered.
IF i were you , then I would take supplementation , in order to have 300,000 IU total, as my loading dose , then I would take 4000 IU per day thereafter. I would want my blood level to rise to at least 120 , and preferably 140 - 160 , because I am try to heal the effects a long term deficiency. You may need to adjust your dose of supplementation. After 60 to 90 days , you will be in equilibrium from any particular dose. Take a measurement , see where you are, then adjust your dose if necessary.
It is not good practice , to start , stop and restart supplementation. Your body gets used to a certain input, the enzymology works best with a constant level.
There is a great deal understand , concerning Vit D , perhaps you have read several of the other threads , they may be useful as well.
Please note , that 4000 IU per day , for an adult is considered safe , in the long term. Please refer to the National Academy of Science , Institute of Medicine, USA guidelines on Vitamin D. A very conservative , well respected institution.
It should be mentioned , that there is a school of thought that says doses of 10,000 IU per day , taken for 60 to 90 days , then measurement of the blood level and then subsequent adjustment of supplementation dose to achieve the desired blood level is acceptable. This protocol is somewhat further outside the NICE guideline. The IOM ,mentioned above, does however say that 10,000 IU daily supplementation is the NOAEL, ( No Adverse Event Level ).
Whew ... hope that helps, and I hope you feel better soon.
best of luck ,
BTBH