I have just had another one of the results of private tests I had done back ( I did these privately as doc refused to do them - saying not available on the NHS)
Vitamin D - 21 ( range 75-200)
the results also had notes on them saying that as I am hypothyroid I should look to have Vit D levels of 125-150.
If I add this to my other results of thyroid antibodies over the top of the scale (>4000)
I wonder - could this be...
Hashimotos encaphalopathy?
hyperparathyroid tumor?
The neurological symptoms are still bad, the pain is getting worse, but that could be because I am weaning myself off the gabapentin, and the memory is shot.
It has also been nearly 5 weeks since my last B12 injection, but have another 3+ weeks untill I am allowed the next one ( have just finished my loading doses - and the doc only stopped these because he said I must be full by now, not because the symptoms improved, especially the neuro ones, did not go away)
Any ideas what else I should be looking for?
hope somoene has ideas of where to go now.
Big Hugs,
M
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Mrs_Somerset
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I take B12 methlycobalamin sublingual tablets as a supplement...my blood tests now show as above the guidelines...but you can't overdose on B12 the body just flushes out any surplus...hope this helps xxx
BTW my Dr is aware of all this but still told me to stop taking it!!
! Of course I consulted with my support groups and then was advised to carry on taking it....my results over a period of 3 years showed a reading of around 373 in a range of 100- 900...... I have learnt that when a person has had their thyroid removed B12 should be over 500 and preferably at the very top of the range...for thyroid to absorb at all....no wonder I was so poorly after my thyroid was removed a year ago....I told my doctor this a few weeks ago when my B12 was tested ...he shrugged his shoulders and ignored my theory....
I am still taking my B12 ...thank goodness for support groups...
Yes, you should have calcium checked before supplementing vit D, and if calcium is high or high in the range you need to get PTH (parathyroid hormone) tested too. Since low vit D can be a sign of hyperparathyroidism. But usually it's just a deficiency. You've probably got calcium tested somewhere along the way? The low vit D would certainly explain some of your ongoing problems. Are you going back to your useless GP with the result? H x
yes indeedy - we got an emergency appointment this morning - went jsut after you messaged me - so good timing.
he agreed tot he calcium test - I know - major surprise - but he did not ask what that was for, so perhaps he is unaware he is being helpful
I gave him the test results for the vit d - he said vit d is controvercial, that it goes up and down with seasons.
I pushed - as he had refused to do the tests I was not letting him off the hook, and asked if he was saying I did not need treatment.
He finally caved and said I should suppliment - I asked for a prescription and he has given me a prescription for 2 weeks of meds, with a blood test now ( becuase he does not trust the private labs results?) and one in 3 months to see if I am better.
my understanding from having read others who have vit d levels higher than mine, that it takes many months to correct so will be interested to see what he does in 3 months when I am not miraculously better?
I also brought up the thyroid test results that I gave him weeks ago - and was horrified at his reply.
he said that he had checked with a neurologist and apparently patients with hypothyroidism have thyroid antibodies and that is normal.
I stated that surely these high levels of thyroid antibodies were not normal - he said I should ask the neurologist when I see him ( he called the neurologist this morning before my appointment with the doc)
so - I ahve an appointment with a neurologist, who thinks thyroid antibodies over the top of the scale are normal...heaven help me!
also asked him to give me my B12 shots back - he said no.
I asked why not - he said he would not want to overmedicate - that my levels must be normal and we could do a blood test to check.
I explained that the symptoms had not gone and the tingling, tiniitus etc were back since I had stopped. I also reminded him the NICE guidelines were clear that I should have loading until no improvement.
I had advice from B12 to ask him to put in writing why he was refusing, so I asked him to do that - he said he was not refusing, he was "deferring" to the neurologist I have not met yet.
I asked if the neurologist was a B12 specialist or thyroid specialist - he said he did not knwo, but that the neurologist could speak to aan endocrinologist if he felt he needed advice.
and that is it.
thanks for all the fish and all that - bye and do not darken my doorstep for 3 months, thank-you, and goodbye...(paraphrasing here - but you get my point)
so frustrating, and yet so predictable - I give up.
Ok - just had call from docs - update on latest nonesense...
My husband went to pick up my vit D - no prescription at pharmacy ( my docs email them through)
My husband went back to the surgery but reception had no record - the doc would call hubby to sort out
Doc just called me - had no idea why - checked his notes, said something about vit D...
fortunately hubby had called me to explain the mixup with the rpescription so I explained to doc the prescription is not there.
He stated - "oh no, I am not giving you vitamin d - you need to have a blood test first, than I can prescribe vit D if you do need it after all"
I confirmed the details he had given me about prescribing it, the twoo weeks of meds etc - why would he delay treament now?
he said he was not delaying treament - it takes a long time to become ill on vitamin D and if I do need any a few more days will not hurt me.
at a level of 21nmol/l (which is 8.4ng/ml) I am in the severely deficient range (anything below 20ng/ml or 50nmol/l) - but a few more days suffering should be OK?
well at least the NHS don ot do Vit D tests - right? - oh except the ones they are now doing to try to prove the private ones are wrong, silly me - why should I be worried.
Oh dear. I actually think it would be good to see the calcium result first anyway before you supplement, so maybe no bad thing to wait. But I don't see why he should waste perfectly good NHS money on another vit D test when you've only just had one done privately...
I like your thinking - always finding something positive in every situation
I looked it up, and you are right ( of ocurse) although vit D helps with calcium levels in most cases, in some cases it could make things worse, so yep, waiting to dose on Vit D until calcium levels are checked would be a good thing.
Oh, what a nightmare! Please tell your Dr that I have my vit D tested on the NHS. It does take a few weeks to come back because apparently the labs test several samples together. I take 2000 IU of Vit D a day as recommended by a private dr. But I do have to buy it myself.
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