Advice sought on test results please...

[AiryFairie]

I was diagnosed Hypo a year ago, and have been on 50mcg of Levothyroxine since. A recent blood test shows B12 278 ng/L (145-910), serum folate 8.1 ug/L (3.0-20.0), TSH level 1.83 mu/L (0.20-4.50) and T4 14.9 pmol/L (7.0-17.0). None of this means much to me - should I be near the bottom of the ranges or top? Would be grateful for someone more knowledgeable to advise if these levels are ok. I do suffer sleep problems and am lacking in energy most of the time. The print-out of my results states "Normal No Action", apart from Bone profile: Serum albumin 32 g/L (35-50) which states "ABnormal No Action". Is it worth me going back to my GP?

[SeasideSusie Remembering]

AiryFairie When you were originally diagnosed, were you put straight onto 50mcg Levo? Did you have a re-test of your thyroid after 6 weeks of being started on Levo. It's normal to do that and increase by 25mcg, then re-test again after another 6 weeks and increase again, and so on until your symptoms disappear. Thereafter it's normal to test annually.

The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their ranges. Your FT4 is in the upper quarter of it's range, your TSH within range, so your GP won't do anything about your Levo. However, without FT3 being tested we don't know where that is and whether you are converting T4 to T3 well enough, but the NHS won't do a FT3 test with those results.

One thing that does stand out though is your very low B12 at 278. The Pernicious Anaemia Society recommends 1000. Anything under 500 can cause neurological problems so you really need some serious supplementing there. Solgar or Jarrows sublingual methylcobalamin lozenges 5000mcg will do the job, take that dose until you get to the top of the range then reduce to 1000mcg as a maintenance dose.

When taking B12 we also need to take a B Complex to balance the B vits. Thorne Basic B or Jarrows B Right are both good ones and contain 400mcg methylfolate which will help increase your folate level. Folate needs to be at least half way through range and in your case should be 11.5+.

I would imagine your Vit D is probably low as well and it might be worth getting that checked. If your GP won't do it you can get it done with a fingerprick blood spot test from City Assays for £28. Come back with the result and members can advise.

Also ferritin is important, low ferritin can cause fatigue amongst other things, ask if you can have that tested.

Getting all of these important vitamins and minerals to theirnoptimal levels should make a difference.

[AiryFairie in reply to SeasideSusie]

Thank you SeasideSusie. Upon my initial diagnosis in July last year, I was told to come back in 2-3 months for another test, so last October, results were T4 15.8 and TSH 1.51 ("Normal No Action"). So I was just sent on my way, and must admit that I felt I had been given my life back, I felt sooo much better than before I started taking 50mcg of Levo. The point of my most recent blood test was to check for Pernicious Anaemia, so I am a little surprised you say it's too low, at 278 ng/L, when it was classed as "Normal No Action". I am a bit nervous of tinkering around with supplements on my own, 'cos I don't really understand all this. Would it be worth seeing an Endocrinologist privately? This site and your advice has really opened my eyes - I had no idea that wasn't being looked after properly! Of course, it's so long since I felt really well and "normal" - I don't even remember what that feels like, you just get used to feeling lethargic, and then feeling guilty about that! I just feel so sorry for those who have it much worse than me, and have suffered damage through the NHS not advising them how they can help themselves. It's frightening...

[SeasideSusie Remembering in reply to AiryFairie]

AiryFairie An endocrinologist won't know anything about B12, a lot of them don't know much about thyroid as their speciality is usually diabetes.

All of the tests available have a reference range. We can be one point within the bottom of that range and the comment 'Normal, no action' will be seen but that doesn't mean the person is well, they can be very unwell at that level but nothing will be done unless we stand up for ourselves and push for help, or help ourselves. Doctors are quite happy to keep us ill, there are many, many examples of that on a daily basis here on the Thyroid forum. This is why we always urge people to get these very important vitamin and mineral tests done and take responsibility for our own health. The alternative is to allow doctors to keep us ill.

I can't emphasise enough the danger of low B12. I'm not an expert so I will tag Marz who is much more knowledgeable than me.

But I would urge you to seriously look into B12. You can start here b12deficiency.info/signs-an... and have a good look around that website and look at the films also. Note how folate and iron deficiency go hand in hand with B12 deficiency, your folate is low and I've suggested you get your ferritin tested.

You may also want to check out the Pernicious Anaemia community here on Health Unlocked healthunlocked.com/pasoc

[AiryFairie in reply to AiryFairie]

Sorry, just realised I should have put "recent blood test was for B12/folate level" ... brain foggggg...

[SlowDragon Administrator]

When you go back to GP also ask for your thyroid antibodies to be tested. There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause of being hypo. NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after.

Many take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron or magnesium, these must be at least 4 hours away

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's too.

[AiryFairie in reply to SlowDragon]

Thank you SlowDragon, I will ask for thyroid antibodies to be tested. It might be useful to know if I have Hashimoto's, but I'm not confident my GP will up for this. I take the Levo first thing, on an empty stomach, but usually only wait half an hour before eating - I will leave it an hour, and see if that helps. I will also keep studying this site - it has been an eye-opener!

[SlowDragon Administrator]

Yep.......pity I just listened to GP/endo for nearly more than twenty years...what a waste of time that was

Hashimoto's is a gut issue, nearly always gluten causing leaky gut. Just replacing the missing thyroid hormones will not correct the cause, or improve the resulting rock bottom nutrient levels.

Recommended websites

Thyroid Uk.org - who run this forum

American sites -

Thyroid Pharmacist - by Isabella Wentz

Chris Kresser

Amy Myers

Blum centre for health