Thyroid UK

Surprising blood results

Background (more in my profile and previous posts):

I was hyper in 2012/13, "cured" by carbimazole, and told to have TSH, T3 and T4 checked yearly for ever. This winter I feel similar to the way I felt before being seriously ill and diagnosed hyper, and can't afford to be that ill again. No joy from the NHS so I researched, found this forum, went to Medichecks and got their Thyroid Check UltraVit. Also, I have fibromyalgia and became hopeful that this is a misdiagnosis, and maybe instead of FM it's something *treatable* such as my thyroid.

The thyroid function is all normal!

FT4 15 pmol/L (range 12-22);

TT4 95/3 nmol/L (range 59-154);

TSH 1.19 mIU/L (range 0.27-4.2) - TSH was 0.72 in October. I wasn't given the range then - EDIT: range 0.3-4.2.;

FT3 4.24 pmol/L (range 3.1-6.8);

TGAB <10 IU/mL (range 0-115);

TPOAB <9 IU/mL (range 0-34).

Instead, I have Vitamin D deficiency. Excited about this, as it may be what I have instead of fibromyalgia, and is treatable. 23 nmol/L (range 50-200).

Ferritin is low, 6.07 Ug/ (range 13-150). Also fixable.

Folate is normal, 12.89 ug/L (range 2.91-50).

And my Vit B12 is high! 256 pmol/L (range 25.1-165) NB I'm not taking any supplement or multivit that gives B12.

I've looked this up and know what needs to be checked - my instinct is that I'm not absorbing B12, therefore producing more and more. My liver and kidney function are tested every time I have a diabetic checkup (Type 1) and that was last done in October, so I'm pretty sure it isn't one of the the scary causes of high B12.

I also think the low iron and Vit D could well be caused by the B12, so that's what I think I want to investigate first.

Any thoughts/input gratefully received! In particular on the thyroid numbers. Is it still possible that a thyroid problem could be hiding behind these figures? (Hint: the answer I want is No. ;))

25 Replies
oldestnewest

Yes your vitamins are all low, and can be improved

Your ferritin is dire. You need full iron panel and either iron infusion or 2 or 3 ferrous fumerate daily with vitamin C to improve absorption

Vitamin D needs to be at least 80nmol and over 100nmol is better. You need loading dose

Look up your local CCG guidelines for Vitamin D deficiency

Eg Oxfordshire

oxfordshireccg.nhs.uk/profe...

B12 may be high due to mixture of things.

Very low vitamin D affects Vitamin B5

drgominak.com/sleep/vitamin...

But all these vitamins are probably low because your Levothyroxine dose is not high enough and therefore your are still slightly hypo

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Is this how you did the test?

Your FT4 is too low - should be nearer 20

TT4 is on low side, should be 100-120 minimum

FT3 should be above 5

TSH should be under one

When we are hypo we get low stomach acid and low vitamins as a result

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many, otherwise for many patients Levothyroxine dose has to be high, with suppressed TSH in order to get high enough FT3

rcpe.ac.uk/sites/default/fi...

Low vitamins due to under medication with detailed vitamin advice from SeasideSusie

healthunlocked.com/thyroidu...

Also See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Reply

Thank you SlowDragon - I'll look those up tomorrow when I can concentrate! But I'm not on Levothyroxine and have never been, and have never been told I was hypothyroid. I was hyper (not hypo) in 2012-13 and was on carbimazole then.

I thought, from looking at all this, that the root of my problems is probably the Vit D OR the B12, and the rest follow from that...

1 like
Reply

Folate is normal, 12.89 ug/L (range 2.91-50).

I think your folate is too low and would be better if it was at least 50% of the way through the range i.e. at least 26 (ish).

1 like
Reply

Thanks, that's the kind of thing I'm wondering about - but I suspect it's the B12 making my folate low. I'll try and improve my diet for folate and iron, while getting the B12 investigated.

Reply

PS I did wonder if being in the bottom end of the range meant it really wasn't ok, despite being in range. :)

Reply

If you were on thyroxine, I'd say those results were a little low. But I'm not quite sure if they would be low for a person with a fully working thyroid. The main thing I'm looking at is freeT3 in the bottom third.

Mainly just to say that they are nothing like hyper.

1 like
Reply

FT4 15 pmol/L (range 12-22);

TT4 95/3 nmol/L (range 59-154);

TSH 1.19 mIU/L (range 0.27-4.2)

FT3 4.24 pmol/L (range 3.1-6.8);

[copied here for ease of reference!]

What I was thinking was TSH low in range, although still within range. That's a hyper thing isn't it? I don't want to see hyper where it isn't :) but I would want to know if it was heading that way. If this is still plenty within range, I'll stop wondering. :)

(I would say it was increasing BUT I can't find out the range for the October test so can't compare 0.72 then with 1.19 now. So neither yes nor no regarding any trend, this level stands alone.)

I am now certain that I haven't got Hashimoto's (knowing that can start hyper before it turns hypo), because antibodies weren't found either now, or five years ago when I was hyper. I haven't (ever, as far as I know) had the right tests to check for Grave's.

Not quite sure why I have mild symptoms now, and odd things all my life which I didn't know could be connected with the thyroid (fluctuating body temperature comes to mind).

Reply

Oh, don't worry about the TSH being 'low' in range. This is a very ridiculous range, the top value (4.2) is extremely high, and really it's more designed to be stingy about diagnosing people hypothyroid than a description of what healthy people would have.

Sometimes graphs are posted on the forum showing the distribution of TSH values people with a healthy thyroid have. I am pretty disorganized so I can not give you a link :p But the vast majority of healthy people have a TSH around 1, a small number, something like 15% or lower will go as high as 2, and a vanishingly tiny number are much above that.

So you definitely don't need to worry that you've got a low TSH. You're TSH is in the 'healthy' area.

I don't know too much about the actual boundary between healthy and hypo in these figures, I know a lot more about dose adjustment for people on Levo. But I do wonder if you might be becoming a tiny bit hypo. I don't know enough to tell you for sure, but I think a euthyroid person would be a bit closer to the middle of the range for freeT4 and freeT3.

Unfortunately doctors need to see these numbers wildly out of whack before they will do anything :( But it's worth keeping an eye on this and bearing it in mind. If your TSH really has raised that much since October, which would indicate that your body is calling out for thyroid hormone, then that would suggest it might be getting worse. If you can afford it I would retest again in maybe 3 months and see if things have changed.

1 like
Reply

No way of knowing whether / how much my TSH has gone up, with the range - and besides, the Oct test was taken around noon whereas this was 8:50am.

I was told to get my thyroid *including T3 and T4* checked yearly - on the NHS. I went to Medichecks this time because my GP refused to test anything other than TSH despite those instructions. I'm going to change my GP soon and that will be to a different authority, because I live on a county border - and a GP that I've heard about from a friend, who keeps on investigating based on symptoms instead of writing people off based on blood tests (a rarity these days!). I'm just waiting until my request for records from 2006 is dealt with (re a different thing). So, what I'm getting to via all this waffle :D is that I won't worry for now about the TSH, as I'm pretty sure I'll have my T3 and T4 done annually from now on AND I now know what to look out for in terms of how I feel.

The really exciting part is still that I now know about the Vit D deficiency. I'm seriously hoping that I never had fibromyalgia in the first place - that isn't treatable (I'm on meds but nothing that gets me back on my feet fully), and Vit D is treatable. This could be life-changing!

Reply

Good luck with the new doctor, they sound like a miracle!

I agree with you, it's good to find out about deficiencies as it means you will likely feel an awful lot better very soon :)

1 like
Reply

Do you have any hyper symptoms?

Reply

Not extreme, but some. But how I have felt through this winter reminds me of how I felt during the winter of 2012-13, and by Feb/Mar 2013 I was really, badly ill. Things like feeling the heat, that's the strongest thing. It's harder to swallow tablets, but then I think I'm making it harder by thinking about my thyroid and tensing up... I never believe my own senses! ;) No significant weight loss but on the other hand I didn't gain over Xmas.

Energy was appalling Aug-Nov last year - but I can account for that (overdid it seriously in August and taking months to recover from that is normal for me) - and now, really good energy. My temperature has been 36-point-something all my life, with periods of fluctuating strangely which I first noticed around 1997 (but also long periods where I don't think it does this). Lately usually around 36.3 C, but varying between 36.1 (if I remember right) and 36.8.

My blood pressure has been going up steadily all through 2017, after being stable on minimum-dose meds for about twenty years. I want to know why, I don't agree it's just my age - not this suddenly. I am fifty but no sign of menopause yet (and my mother was mid-fifties before she began to get hints of it, plus I was late starting periods and similar to her in the way I did labour too, so I'm not surprised to have no signs so far). I don't believe it's menopausal hormones affecting my b/p or anything else.

And my vague-maybe-suspected sensitivity to dairy blew up into a proper intolerance this year, and very recently I started reacting strongly to coffee.

I printed off the hyper and hypo symptoms checklists from Thyroid UK, and ticked about half the boxes on BOTH sheets! Looks like something else is going on, not the thyroid.

Reply

Do you have a goitre? Could it be nodules?

Reply

I don't *think* I do but I didn't know I did five years ago - in fact the more experienced doctor used me for a less experienced doctor to practice feeling one! The opposite of easy to find. :)

I haven't read up about nodules, I don't know.

Reply

Remind me what causes nodules?

Reply

Reading through your recent posts and replies - I see I mentioned Homocysteine to you in connection with your stroke/TIA. You said you were sure it was tested and you were going to seek out the result. Cannot see this mentioned above.

So - reading the above post with your raised/over range Active B12 - I think this is now important to consider. The B12 test you had indicates the amount of B12 available in the serum that can transfer into the cells where it is needed. Sometimes you can have adequate B12 in the blood but not enough in the cells. The Homocysteine - test if raised is indicative of low B12 in the cells. Also the MMA test should be done - Methylmalonic Acid. Also prudent to have Liver Enzymes checked as these too can affect the B12. Homocysteine is much more of a marker for heart issues and strokes - more so than cholesterol. When I treated my raised Homocysteine the cholesterol also reduced - not that it was high when first diagnosed with Hashimotos. Modern day levels are all about getting more and more people on Statins - same with blood pressure. They keep lowering the levels :-( Are you taking magnesium for your BP ?

Do post the results of your Iron Profile done at the Diabetic Clinic just in case their idea of being OK is not - something we see here time and time again. Always obtain copies of all results with ranges for your own reference and monitoring of your progress. I do not see how your Serum Iron can be optimal when your Iron Store is almost empty. Old Mother Hubbard - springs to mind !

Not sure how your Low Iron and Low VitD is connected to your raised B12 ? How much VitD do you propose to take - looks to me as if you need loading doses and then a good maintenance dose - not the paltry amount prescribed by the NHS. I take 10,000 IU's daily in the winter here in Crete to keep my levels optimal. You have read Dr Kendricks blog in my earlier post so you know that your VitD is important - it needs to be at least 100.

Ferritin is dire and again low levels of iron/folate can cause the raised heartbeat. You will know that oxygen is transported around the body by attaching to the iron in the red blood cells - so when iron is low then so is oxygen. The heart cleverly detects this and beats faster to produce more oxygen - simplistically non-medical :-)

Type 1 D is auto-immune I believe so being gluten free would be helpful in helping to heal the gut - with possible other positive knock-on effects - like improved absorption. I have read in your previous threads that GF has been suggested and you replied that you were almost Dairy Free and would find GF a little difficult. I too thought the same and went GF over 3 years ago - I have Hashimotos/Crohns - and have managed to lower the anti-bodies considerably.

Enough of my ramblings - hope you can feel well soon !

1 like
Reply

I like your ramblings. But I'm in flare-up this evening, replying will have to wait. Just wanted to say I have noticed - thank you. :)

1 like
Reply

And I'm back! Taking your points in order:

Homocysteine - I haven't been able to get my results from 2006 (when I had the stroke). I was waiting to see results from then, before changing my GP - now nothing is keeping me there, so I'm registering with the new one tomorrow. Can't wait! Hopefully it should be straightforward then, and I'm prepared for the admin charge, which is fair enough as I'm going to ask for everything from 2006 and that's an awful lot of tests. An AWFUL lot. I was a VIP - Very Interesting Patient. i can't imagine homocysteine wasn't among the things they looked at.

It's seriously scary how wrong the guidelines are on almost everything we hear about. :(

I understand about high serum B12 being able to coexist with low/deficient B12 as you say. In fact I'm banking on that being me, because I have decided not to have serious liver trouble which is the other main reason for high B12 reasons! As it happens, a friend recently found her B12 is elevated and her GP is taking her symptoms and questions seriously so on, investigating in depth - was puzzled and that's when my friend mentioned it in conversation and I had a quick google for her. So I'd already heard of high B12 (which is uncommon) and knew that many doctors know nothing about it! And this is the GP I've decided to switch to, as she is a listener and doesn't dismiss problems just because she doesn't know what they mean. Gotta be good.

I'm holding off on the various tests until I've seen the new GP, and hope to get most or all of them on the NHS. It's been years so far, a few more weeks won't hurt. I mean the MMA and liver enzymes.

So far I haven't done anything about the Vit D deficiency for the same reason, don't want to confuse the tests I'm hoping, or should say intending, to get out of the new GP.

Statins - definitely feel tons better since coming off them. It was a series of flukes and chanced-upon information that led me to come off them... overall with regard to this stuff, I feel very lucky.

I'm not taking anything containing magnesium. I add supplements one at a time and after thorough research, and come off each one every so often to be sure it's making a difference. (Now that I know about the various tests and this forum, it'll speed up the process of deciding and involve much less trial and error.) I've heard a lot about magnesium - for fibromyalgia in particular - but hadn't got to it yet. Added Co-Q10 most recently and that does help.

Vit D minimum 100 and mine's 23 - wow! This delights me. If you're going to have a problem, always best to have it really easy to see, then no one can dispute it. ;)

I shall keep thinking about gluten free... maybe if these levels are sorted, the dairy sensitivity will not be so bad. Dietary changes are complicated and I have limited brain for dealing with that, many days. Might not be so bad if it was only gluten and not dairy at the same time.

Oddly, my blood pressure was fine this morning. I took hibiscus for a few weeks which seems to have fantastic results, and saw no difference. But today - I hadn't taken it since Xmas - it was around 120/78. The only change has been that I've gone from 3-4 cups to 2-3 cups of coffee daily. Used to vary a lot, before trying to cut down I only had one some days. I know today is only one day (tested morning and afternoon though), but it's hopeful - and also puzzling.

1 like
Reply

PS. Today I spoke to the diabetic team and have got my full results from October - which the GP practice said couldn't be got!

When my TSH was 0.72 , the range was 0.3-4.2.

She told me this on the phone but it isn't on the sheet she emailed... oh well.

There are some others so I'll start a new thread - not sure if I need to know all/any of these levels anyway. :)

1 like
Reply

The TSH without the other tests does not really tell the full story. You really need the Full Profile to include the FT4 and FT3 along with Thyroid Anti-bodies. The result was on the sheet but not the range. I saw the other results on your other thread - not that many of them meant much to me :-( I am suspecting your FT4 will be in range but the FT3 will be low in range. Anti-bodies do need checking to rule out Hashimotos.

Reply

Sorry, I missed your reply. I see your point... the Medichecks doctor did say on the phone that my thyroid is fine based on the UltraVit test. Wouldn't his judgment be reliable?

Reply

Entirely your choice who you choose to follow. I would read through your entire thread again and make some notes.

Even Medichecks and BH have to fall in line with Guidelines.

1 like
Reply

I was going to make notes! Just got my appointment with the new GP - not until mid February! But I want to get together a nice clear page of points to make/ask when I see her. That means getting my head around all the detail and extracting a summary of it. ;)

1 like
Reply

Just read your profile mentions previous strokes

Ask your GP to test homocysteine levels and MMA

This can be better more accurate way of measuring B12 and high homocysteine is linked to stroke too

B12 can have genetic issues

Links about Using test of Homocysteine levels to check for low b12

b12-vitamin.com/homocysteine/

veganhealth.org/b12/hcy

aafp.org/afp/2003/0301/p979...

1 like
Reply

Thank you! I've just discovered homocysteine since finding this forum. :) Trying to get my bloods from 2006 when I had the (first) stroke, as they tested tons of things then and I can't imagine they omitted that. I've had no success getting those results by logging in online so I'm going to ask the GP i've just switched to.

I did wonder about heredity and B12, because I remember my maternal uncle saying his was found to be low. He died in about 2001 and he had a few heart attacks, but on the other hand he "set out to" wreck his cardiovascular health in terms of lifestyle - lived about twenty years longer than the doctors said he would.

My B12 tested as too high, but I feel I'm probably deficient, giving a false positive - a false "over-positive" as it were. The Medichecks doctor said my liver's fine, based on bloods done for the diabetic clinic. (I think I mentioned in previous posts that diabetes and the other obvious things were ruled out as causing my stroke (or strokes). Just in case you were going to say that next. ;) )

Collecting links now, I'll have to do a lot of reading tomorrow. :)

1 like
Reply

You may also like...