I wonder if anyone could take a look at my latest blood test results for me? My continuing battle to find thyroid hormone replacement that makes me feel alive continues. To briefly recap, I had a total thyroidectomy in 1979. Since then I've had levothyroxine, T3 on it's own, t3/Levo combo, Naturethroid, and I'm currently on 3 x 60mg Thiroyd NDT and 50mg Levo. I still have all the symptoms of Hypothyroid including extreme tiredness, joint pain, brain fog, lack of motivation, itching, inability to lose weight etc. etc. My test results are as follows:
T4 8.8pmol/L Range 12-22
T3 4.1pmol/L Range 3.1-6.8
TSH 0.89 Range 0.27-4.20
Vitamin D 56nmol Range 50-120
Serum Ferritin 98ug/L Range 13-150
Serum C reactive protein 3mg/L Range 0-5
Vitamin B12 204ng/L Range 197-771
Folate 2.3ug/L Range 1.9-25
So my GP says all is normal and fine, which is what he always says. I wish I felt normal and fine (I can't remember what that feels like).
Any comments/advise gratefully received.
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marlathome
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Your Thyroid levels appear too low and as direct result your vitamin levels are dire
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If also on T3, or NDT make sure to take last dose exactly 12 hours prior to test
Is this how you did the test?
If so.....
FT4 is below range, how can GP think that's fine!
Many of us, even on some T3 find we need FT4 at least half way in range. Suggest you increase Levo dose by 25mcg and retest in 6-8 weeks
FT3 is too low, if this does not improve once FT4 is around 17-18 , then look at adding more T3 in some form
Vitamin D is too low. How much do you currently take? Aiming to improve to at least 80nmol and around 100nmol may be better . Vitamin D mouth spray by Better You is good as avoids poor gut function. It's trial and error what dose each person needs. Perhaps start on 2000iu
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
B12 and folate work together, they are both extremely low. Supplementing a daily good quality vitamin B complex, one with folate in not folic acid may be beneficial. B vitamins best taken in the morning after breakfast
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Thank you so much SlowDragon for your very comprehensive reply. I have my blood test taken exactly as you describe so the results aren't compromised in any way. I thought my Vit D and B12 were quite low and so I'll be looking at the links you have provided to see how best to proceed. There's no point in asking my GP for any supplementation as I won't be prescribed - he's seriously p'd off with me because I won't just take Levo that he prescribes but buy my own NDT - I have a battle to get T3 tested every time. It's so useful to have someone knowledgeable take a look these things. Thanks again.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
If you do have any signs of B12 deficiency then you should list them and discuss with your GP. Ask for testing for B12 deficiency/Pernicious Anaemia. With your very low level I wouldn't be surprised if you need B12 injections, many people with an original level in the 300s have injections.
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Folate 2.3ug/L Range 1.9-25
Again this is very low and folate is recommended to be at least half way through it's range. Folate and B12 work together. I don't know if yours is low enough for your GP to prescribe folic acid, if not then you need to self supplement. Methylfolate is better than folic acid.
Don't start folic acid/methylfolate before further investigation into your B12 has been done and B12 injections or supplements started. Supplementing before will mask signs of B12 deficiency.
When supplementing B12 we need a good B Complex to balance all the B vitamins.
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Vitamin D 56nmol Range 50-120 [22.4ng/ml]
The Vit D Council recommends a level of 125nmol/L [50ng/ml] and the Vit D Society recommends a level between 100-150nmol/L [40-60ng/ml]
However, they also recommend supplementing 5000iu on the days we don't sunbathe.
If that was my result, I would use 5000iu daily throughout the winter and retest in March. When you've reached the recommended level then you'll need a maintenance dose 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 City Assays vitamindtest.org.uk/
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.
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
Check out the other cofactors too (some of which can be obtained from food).
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Serum Ferritin 98ug/L Range 13-150
This is good, you can maintain this level by eating liver, liver pate or black pudding every couple of weeks or so. Also include iron rich foods in your diet apjcn.nhri.org.tw/server/in...
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Serum C reactive protein 3mg/L Range 0-5
This is an inflammation market and is within range.
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Thyroid hormone can't work properly if our nutrient levels aren't optimal, so optimising all those may help.
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TSH 0.89 Range 0.27-4.20
T4 8.8pmol/L Range 12-22
T3 4.1pmol/L Range 3.1-6.8
Being on NDT will generally give a low TSH (maybe even suppressed) and often a low FT4. It's the FT3 result that is important when on NDT and yours is only 27% through it's range. Low T3 causes symptoms. You will probably feel better if your FT3 was in the upper quarter of the range. You may be someone who does better on T3 only, or a different balance of replacement hormones than you are currently taking. But even so, your nutrient levels need optimising before any hormone is likely to work.
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I would also be looking at testing adrenals. Consider a 24 hour saliva adrenal test that does both cortisol and DHEA, eg
Thank you SeasideSusie for some very useful information. I have tried T3 as sole replacement but I didn't do very well on it - was still having hypo symptoms but heart rate was very erratic and a bit scary. I think genetically I don't process T3 very well so it's a problem for me, Do you think my current dose of NDT is optimal? I'll certainly be checking into the Vitamins, but I think it's highly unlikely that my GP would agree to me having vitamin B injections since he believes my levels are 'fine'. I wonder if you can have them done privately? Clearly I need to do some more research but thank you for pointing me in the right direction.
If vitamins and minerals have been less than optimal all this time, and adrenals out of whack, no thyroid hormone is going to work properly. I was put on a T3 only regime 20 years ago by probably the most eminent private thyroid doctor, but it wasn't right for me, I didn't do well on it at all, nor Armour, nor generic NDT. It wasn't until many years later that I discovered nutrient deficiencies which weren't checked at the time, plus adrenals and sex hormones needed attention. So if you get the building blocks in place correctly, you should then find out which thyroid hormone replacement will be right for you.
Your current dose of NDT isn't giving you optimal results, but I don't think anything will until you sort the other stuff out first. There's not a lot of point in increasing your dose if your body can't use it.
Your GP may say your B12 is fine because it's in range, but look how low it is. Did you check the list of signs and symptoms? Do you have any? That's what doctors should go by, not numbers.
Ask on the Pernicious Anaemia Society forum about your B12, see what they say
I joined the Pernicious Anaemia Society forum and asked for advice as you suggested. One of the Admin says I do not have folate deficiency and that I should go back to my GP and ask to be treated for low B12, even though I mentioned that he wouldn't take very kindly to that since I've already crossed swords with him about my Thyroid medication. So I'm no further forward on that front really, although having checked the B12 deficiency symptoms I seem to have a lot of them! Another member of that forum said my symptoms sound more like diabetes than anaemia but I was tested for diabetes and it was ruled out. Anyway, I've ordered the Thyroid DNA test to see whether that can shed any light.
No, you're not Folate deficient, but you are very low in range as I mentioned in my previous reply.
I was under the impression that where B12 is concerned doctors should go by symptoms not by the test result. You could list all your symptoms and try and see a different doctor.
Your levels are extremely low, considering your dose. So, the question arises: how do you take your thyroid hormone?
Do you always take it on an empty stomach, leaving at least one hour before eating or drinking anything other than water? Do you take any other medication of supplements at the same time as your hormone? This applies to both NDT and levo.
Hello greygoose - I think you've tried to help me in the past and here I am again! I take my thyroid hormones all at the same time, as soon as I wake up with a glass of water. Nothing then until coffee about one and a half hours later. I take no other medications in the morning and just an anti-depressant at night (unfortunately). I've tried virtually every combination of thyroid hormone and varying times of day/night in line with information from various authors but I don't find any of them more beneficial than the other. So I don't think it can be that but thanks for the suggestion.
Absolutely essential to have optimal vitamin levels for any thyroid hormones to work well
So getting these optimal is first step
Do you have Hashimoto's? Ever had high thyroid antibodies? If so strictly gluten free diet is often essential
Personally the only mix that works for me is high vitamin levels with significant supplements, absolutely strictly gluten free, Levo at night plus small dose of T3 (prescribed by NHS) every 8 hours.
I had Hashimotos with nodules when my thyroid gland was removed 30 years ago. Antibodies were sky high at the time but I was pretty ignorant back then and had no idea what that meant. I have had my DNA profile done with 23&me a few years ago and discovered I had a genetic mutation affecting the way T3 is synthesised in the liver. Unfortunately the 23&me reports are not particularly user-friendly so I might investigate further with the blue horizon test. Thanks
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