I apologise to the people who replied to me but it seems I've accidentally somehow deleted my post lol. So posting again for advice and an update.
Results from GP bloods on Thursday last week. I was diagnosed in Oct and started on 50mcg Levothyroxine. In Nov I was increased to 75mcg.
Serum TSH level 2.25 mu/L [0.35 - 4.94]
Serum free T4 level 11.5 pmol/L [7.5 - 21.1]
Serum ferritin level 34 ug/L [23.0 - 300.0]
Ferritin was 9 in Oct so I appreciate its still low but I am working on it.
Vitamin D
Serum total 25-hydroxy vitamin D level 13 nmol/L [50.0 - 120.0]
Below low reference limit
Comment Severe Vitamin D deficiency (25 OH Vitamin D <15 nmol/L)
I will attach a photo of the text message I received from the GP. I have been unable to get a call from a GP. Just keep telling me its not important and I'll be put on a list for a call next week. I have booked a private endo appt from the list on thyroid UK website. That's for middle of March.
Just looking for advice on how much vitamin D I should take. I appreciate my GP should be prescribing me loading doses but as you can see I'm not getting far with him lol. I don't wanna sit and do nothing til mid March. So I'd like to atleast start on raising my vitamin D and unfortunately I can't remember the advice given on here before.
Results from October -
Serum vitamin B12 level 411 ng/L [187.0 - 883.0]
Serum folate level 3.9 ug/L [2.7 - 15.0]
I am taking B complex and extra B12 and 1 x ferrous gluconate a day. I am going to book full thyroid check before the private appt so I have the results ready. Then I can also recheck my B12 level.
Ah I posted again with this screenshot after the GP did bloods. And that's no longer showing. Was some advice on there about self treating loading doses and I forgot what it was lol
As I said in your last post you really shouldn’t self treat with loading doses without having calcium and parathyroid tests first, if you have hyperparathyroid disease with a high calcium level taking a loading dose is not a good idea.
This is severe Vit D deficiency and your GP should prescribe loading doses in accordance with NICE Clinical Knowledge Summary. If the receptionist says it's not important I would just say "I beg to differ, I believe severe Vit D deficiency, which is what my test result confirms, is very important". Ask to speak to the practice manager.
If you really want to treat yourself here are the guidelines:
If rapid correction of vitamin D deficiency is needed, for example in people with symptoms or about to start treatment with a potent antiresorptive agent (zoledronate, denosumab, or teriparatide), prescribe a fixed loading dose followed by regular maintenance vitamin D therapy 1 month after loading.
The loading regimen should provide a total of approximately 300,000 international units (IU) of vitamin D, given either as separate weekly or daily doses over 6–10 weeks. See the section on Loading dose regimens in Prescribing information for more detailed information.
Maintenance therapy of vitamin D equivalent to 800–2000 IU daily (up to a maximum of 4000 IU daily for certain conditions such as malabsorption following specialist advice), given either daily or intermittently at a higher equivalent dose.....
If correction of vitamin D deficiency is less urgent and when co-prescribing vitamin D supplements with an oral antiresorptive agent, maintenance therapy (800–2000 IU daily) may be started without the use of loading doses.
Several vitamin D loading dose treatment regimens are available, including [ROS, 2018]:
50,000 IU once a week for 6 weeks (300,000 IU in total).
40,000 IU once a week for 7 weeks (280,000 IU in total).
1000 IU four times a day for 10 weeks (280,000 IU in total).
800 IU five times a day for 10 weeks (280,000 IU in total).
Note: this list is not exhaustive.
Personally, I would suggest you take D3 daily rather than once a week. So looking at the first option above maybe take 10,000iu for 5 days a week (weekends off).
The Vit D Society and Grassroots Health both recommend a level of 100-150nmol with Grassroots Health's recent blog post recommending at least 125nmol.
Once you've reached the recommended level then a maintenance dose will be needed 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. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they aren't taught much about nutrition, that when taking D3 we also need it's important cofactors - magnesium and Vit K2-mk7.
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. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.
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.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The company has told me the K2-MK7 is the Trans form
Magnesium is needed to help the body convert D3 into it's usable form and large doses of D3 can induce depletion of magnesium. 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.
I can't even get through on the phones and I've sent a message on their online booking system and all I can get is a triage appt, 5 mins for next week.Just such a battle and don't wanna be waiting too long to start the doses to sort myself out. Thank you for the advice and links.
I haven't given advice, I've quoted the NICE treatment for Vit D deficiency and suggested what I would personally do. It's up to the OP what she does with any information that's passed on to her here but from what she's already said she can't even speak to her GP let alone ask for calcium to be tested. I did suggest she asks to speak to the practice manager to try and get somewhere with her GP because I've said it's the GP who should be dealing with this.
The sentence “Personally I would suggest you take VitD daily” etc I would read as advice of a high dose daily.I think there isn’t enough caution given about vitd on the forum, it isn’t safe for everyone.
And this. All from October but the GP at the time didnt test my vitamin D.
I asked to speak to another GP who this time has done my Vitamin D but is now impossible to get hold of.
in reply to
Believe me, I've switched surgeries to even get a diagnosis and by then my TSH was 23+. I've learnt more on here than anything a GP has said in months. All I get told as you can see from the text is everything is normal. I'm tired of battling and prepared to go private to get my thyroid issues sorted.But I would like to do what I can to help myself. If it's safe for me to self dose loading doses I'll do it.
I've dealt with 2 GPs now at this new surgery. First one was trying to leave me on 50mcg and didn't even test vitamin D. Second one finally did it but tells me to get some sunshine lol.
My patience is just wearing thin. I have 5 kids, one who has Down Syndrome and I'm physically and mentally exhausted.
Hang in there, your appointment next week will come around eventually. You are doing so much more work just to put one foot in front of the other than the rest of us. Call in any help you can. Once you get your Vit D sorted, things will I hope pick up.
As results of calcium and pth fluctuate you need all 3 tests down again and at the same time, pth is time critical so needs to get to the lab within an hour.
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