I know some of you have great knowledge on vitamins, and would love some advise. Last week I went to private gp because have been feeling awful and it would have taken 6 weeks to see mine here. My legs ache, tingle...just hurt, my feet burn and throb and my hands burn, my calf muscles are very tight, I can't sleep at night because my bones ache...and my hips..or something! Lots of other symptoms but who knows what causes what.
He knows that I have hashis, and other autoimmune diseases...and tends to just blame everything on that. I said that I was concerned that it might be lack of vitamins etc (because blood tests historically show that I am anaemic). I am on a clinical trial and although lots of blood gets taken, its double blind, so I haven't had the standard things checked for a while.
I said I'd like Ferritin, Folate, D3, b12 checked.
A few days later, when I had to spend the day in bed I was so sore and exhausted, he sent the results, saying only haemoglobin is slightly under range which is insignificant and likely to be due to the autoimmune diseases. He didn't even check b12 or folate, and gave no advise on d3. He also knows that I am on T3 only and was panicking about how low my T4 level was. Surely it is normal to have very low T4 if we are on T3 only? He wants me to go back to Endo and try adding some T4 in again!! I felt so ill last time! I think this is simply a matter of vitamins.
I am going to reply to him, but would like to get my facts straight before I do and I think that we are supposed to be in the top half of the range for these things. Is that correct? Advice on these would be great.
haemoglobin 113 (115-155)
red cell count 3.5 (3.98 - 5.15)
MCV is normally highlighted as high, but this time just below top range.
Ferritin 75 (13-150)
25 OH vitamin D 26 (50 - 100)
TSH 1.23 (0.27 - 4.2)
Free Thyroxine 2.9 (12.0 - 22.0)
T3 1.9 (1.3 - 3.1)
I am thinking that a low b12 might cause some of these symptoms, but have no idea what it is.
I would be very grateful for any help.
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puffyface
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You need an increase in t3 it's far too low. Ferritin not too bad but best 80-100. But vitamin d is abysmal! You haven't been prescribed vit d? That is disgraceful. I will tag in SeasideSusie , she is expert and will give much better advise than my foggy brain ever could. I'm sure she will when she gets chance.
About b12 and folate... You could get done private via thyroid UK, finger prick test at home or venous sample.
I'd be tempted to get a comprehensive thyroid plus vitamin tests (b12 folate ferritin) to get better idea.
I am not medically trained so I am not diagnosing anything, my reply is based on my own experience, reading and research.
Low haemoglobin may indicate anaemia.
Low RBC may indicate a nutritional deficiency, eg B12, iron or folate deficiency.
Low hemoglobin with low RBC count and low hematocrit may indicate anemia.
MCV is raised when your red bloo cells are larger than normal (macrocytic). The cause can be nutritional deficiencies such as iron, folate or B12 deficiency.
I think you can see a theme here.
You can get your Active B12 tested with a home fingerprick test with Medichecks:
Use code THYROIDUK for 10% discount for any test not on special offer.
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25 OH vitamin D 26 (50 - 100)
This is Vit D deficiency and should be treated with loading doses according to NICE treatment summary for Vit D deficiency: cks.nice.org.uk/vitamin-d-d...
"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the local guidelines or this summary and prescribes the loading doses. Once these have been completed you will need a reduced amount so you should make sure that you are retested after you have finished the loading doses so that you know how much you should then take going forward. Most doctors, if they continue prescribing, only give 800iu daily which isn't enough. If GP wont retest then do this privately (link below) and post your new result at the time for members to suggest a new dose to bring your level up to what's recommended by the Vit D Council/the Vit D Society - which is 100-150nmol/L - and then you'll need a maintenance dose 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. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Your GP won't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council -
D3 aids absorption of calcium from food and 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.
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 tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. 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 tablets/capsules, no necessity if using topical forms of magnesium.
Thank you so much SeasideSusie. I know your not medically trained, but also that many people on here know much more than some very expensive doctors! I can see the theme too, but am so brain fuddled that I am questioning myself. I think I must be b12 deficient, although they haven't tested it for a while. The last time was over a year ago and it was 201ng/l (180 - 1000). My MCH and MCV readings have always been highlighted as high and my haemoglobin slightly low.
I am on T3 only (20mcg twice a day). I'm not sure what this result is, I think it must be total T3. It just says triiodothyronine (t3) 1.9 (1.3 - 3.1).
Thank you again. Going to read this afternoon and make a plan to get myself feeling better before the Easter holidays.
If you have any then list them to discuss with your GP and ask for testing for B12 deficiency/pernicious anaemia.
The Serum B12 test (which is what yours is), tells us the total B12. The Active B12 test tells us what's available to be use by the cells. Some people can have a decent Serum B12 level but low Active B12.
I'm not sure what this result is, I think it must be total T3. It just says triiodothyronine (t3) 1.9 (1.3 - 3.1).
It could be Total T3, I'm sure it would say "Free" if it was. Total T3 unfortunately doesn't tell us anything other than the total amount of T3. We need to know the amount of Free T3. Are you in Scotland? I think they do Total T3 there.
It might be worth doing the ULTRAVIT test to get the full picture, that includes Free T3 and Active B12.
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