Looks like everything is now 'normal'? - Thyroid UK

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Looks like everything is now 'normal'?

mostlyhappy profile image
22 Replies

Following the advice on this forum (thanks!) to check my B12 levels, I took the plunge and ordered a test from BH. Results back today.....it looks like I am OK. I am completely new to trying to understand thyroid issues/ levels etc and the brain fog isn't helping. My GP started me on 25 Levo for 4 weeks, retested, and now I am on 25 one day, 50 the next, retest due in 6 weeks. At first I didn't notice any difference but in the last couple of weeks I have started to feel a little better, still very tired, cold and (starting to improve) carpal tunnel type sensations.

Looking at these results, it looks like I am on the right dose and everything is within 'normal' range, though maybe I should top up my Vit D. My GP did say that I might have to go to 50 each day after the next blood test but she wanted to do it gradually. The antibodies result is a bit off (it was 580 on my first GP test so no surprises) but does that matter if everything else is 'normal'?

I feel out of my depth with this :/ any help interpreting these results would be so appreciated.

CRP 1.6(<5.0 )

Ferritin64.9(20-150)

TSH2.77(0.27-4.20)

T4 total82.2(64.5-142.0)

Free T415.38(12-22)

Free T33.99 (3.1-6.8)

Anti-Thyroidperoxidase absH >600 (<34)

Anti-Thyroglobulin AbsH 238.2(<115)

Vit D (25 OH)52(Def <25, Insufficient 25-50, reduce dose >750)

Vit B12267(Def <140, Insufficient 140-250, reduce dose >725)

Serum Folate32.51(10.4-42.4)

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mostlyhappy
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22 Replies
Rapunzel profile image
Rapunzel

Hey (((mostlyhappy))) your levo dose remains a starting dose; there is often a drag between the bloods moving in the right direction and you feeling better so hang on in there. You may benefit from supplementing B12 - I use Jarrow 1000mcg a day - you need to take this with a B complex to keep all the other Bs on the level and some D3 probably wouldn't go amiss..

You may also need a suppressed TSH to feel really well. The antibodies show that your have Hashimotos disease, the most common type of hypo - your levels may go up and down as your thyroid is being eaten by this autoimmune disorder, which may be alleviated by going gluten free.. There is probably more to comment on but just wanted to wave, really. Some wise ones will be along to comment soon...welcome :)

mostlyhappy profile image
mostlyhappy in reply to Rapunzel

thanks Rapunzel xx

I do feel such a numptie for not understanding all this! I'll go and google Jarrow :)

Rapunzel profile image
Rapunzel in reply to mostlyhappy

We hypos are no good with that word, BTW 'normal'. Ask your GP's receptionist for copies of your blood tests, or better, sign up for patient access so you can see your results online - check to see if your practice is up and running with this - they have to be by next year or 2018, I think ...

Don't apologise - I was a numpty when I landed five years ago and remain one all this time later. There are other ways to contribute as well as offering wise words. Hugs are just as good, and the odd tenner to TUK never hurts, IMO x

shaws profile image
shawsAdministrator

Your results don't look as if you are on the right dose:

1. Your TSH is too high at nearly 3 - it should be 1 or lower. (many doctors think that if it's anywhere in the range that's fine (No it isn't). 1 or lower and some need it suppressed.

Both FT4 and FT3 need to be higher and when your hormone dose is increased they should rise and your TSH lower

You have an Autoimmune Thyroid Disease called Hashimoto's and your antibodies can be helped to reduce by going gluten-free.

Your Vit D and B12 should be higher. The recommendation for B12 is 1,000.

As bloods aren't my forte others will respond who are better informed than myself. :)

mostlyhappy profile image
mostlyhappy

I really appreciate your input Shaws and Rapunzel .

It is a minefield trying to work out what normal and in range really means. I think the GP will put me on 50 per day at my next test, she did say she wanted to do it gradually. Meanwhile, I'll sort out some B12 and Vit D.

Gluten free? Gulp. That's quite a thought. There are coeliacs in my family so I am used to cooking for them...but the thought of no more oatcakes and houmus, Friday night pizza, marmite on toast......

If thyroid functions are brought within normal range...does it matter that you have high antibodies?

shaws profile image
shawsAdministrator in reply to mostlyhappy

If you want a particular person to be notified that you've mentioned them in your response, press @ before their name then a box will open with several suggestions, click on the one you want and they will be notified. I've put it in Rapunzel's name as she might not be aware you've included her. :)

mostlyhappy profile image
mostlyhappy

yes, I think you are probably right eljii !

SeasideSusie profile image
SeasideSusieRemembering

mostlyhappy Ferritin should be at least 70 for thyroid hormone to work properly, preferably half way through range, so you could do with increasing that a bit. You could try eating iron rich food (liver is doing it for me) or get something like Solgar Gentle Iron which has 20 or 25mg elemental iron to nudge it up a bit. If you decide to supplement iron then take each tablet with 1000mg Vit C to aid absorption and help prevent constipation. Take iron 4 hours away from Levo and other medication and supplements as it affects absorption.

Your Vit D is too low at 52, recommended is 100-150. Supplement with D3. I would take 5000iu daily for 2-3 months then retest. When you reach 100-150 reduce to 5000iu alternate days as a maintenance dose. Retest once or twice a year to ensure you don't go too high (220 is toxicity level according to City Assays who do private home fingerprick blood spot tests for Vit D).

When taking D3 we also need to take K2-MK7. Vit D aids absorption of calcium from food and K2 directs it to bones and teeth rather than arteries and soft tissues. Magnesium is another co-factor when taking Vit D so you should take that as well. D3 and K2 are fat soluble so should be taken with dietary fat. Magnesium is best in the evening administrator calming and can aid sleep.

B12 is way too low at 226. Anything under 500 means there is a risk of neurological symptoms and the Pernicious Anaemia Society recommends 1000. You should supplement with Solgar or Jarrows sublingual methylcobalamin lozenges 5000mcg daily for about 3 months and then reduce to 1000mcg daily. When taking B12 we need a B Complex to balance the B vits. B vits are stimulating so should be taken in the morning, no later than lunchtime. B Complex usually says to take with food. The sublingual B12 should be dissolved under the tongue where the blood vessels will take it directly to the bloodstream, never chewed or swallowed as stomach acid will destroy it. B12 doesn't have to be taken with food.

For your high antibodies you need to be scrupulously gluten free, no cheating, as this should help reduce the antibody attacks. Gluten contains gliadin which triggers the attacks. The least bit of gluten can start an attack and the effects can last for a long time. Many members have found that a gluten free diet helps enormously, some people also need to be dairy free. Supplementing with selenium also helps reduce the antibody attacks and also helps with the conversion of T4 to T3.

mostlyhappy profile image
mostlyhappy in reply to SeasideSusie

I'm in awe of all this knowledge! I am trying to unpick it and make sure I understand it all- thanks x

greygoose profile image
greygoose

I agree with shaws, you are not on the right dose. Your doctor is being rediculously conservative with increases. You should be on 50 a day now, and going up to 75 next test.

You need to take at least 5000 mcg sublingual methylcobalamin for your low B12. 1000 mcg won't do anything for you. Optimal is 1000, and it takes quite a bit of doing to get up that high.

Yes, it does matter about the antibodies, even if your Frees are in range (just in range isn't good enough, anyway, you need optimal). For one thing, they cause symptoms. For another, your gland is being destroyed by your immune system. To slow that down and reduce antibodies, you need to have your TSH at zero, and be gluten-free. Possibly dairy-free, too. And take selenium. That is known to reduce antibodies. :)

mostlyhappy profile image
mostlyhappy in reply to greygoose

I'll push for an increase at my next test, I have a feeling she is going to want to stick to a low dose if results are within range. The antibodies have gone up from 580 to over 600 since starting Levo, so yes, I will have a serious look at gluten free. Meanwhile I have ordered up some B12 and Vit D3. thanks x

greygoose profile image
greygoose in reply to mostlyhappy

You're welcome. But, remind your doctor that it is your thyroid, your body and your health. She may like low doses, but she doesn't have to live with the consequences. She is just there to advise you, not to dictate to you. That is not her role.

mostlyhappy profile image
mostlyhappy in reply to greygoose

you are so right, I need to remember that it is me that knows what is normal for me. I do get intimidated by doctors, I hardly ever go and when I do, I feel too apologetic. I am almost 50 and about 2 stone overweight, it is as if that explains everything.

greygoose profile image
greygoose in reply to mostlyhappy

Lack of assertiveness and self esteem are part of the disease. It's something we have to learn to overcome. And l often think doctors take advantage of that, either deliberately or instinctively.

shaws profile image
shawsAdministrator

You can feel worse initially until your dose is raised to an optimum. Its quite a slow procedure with a blood test about every 6 to 8 weeks (I had mine every six weeks as I felt so dreadful). Now I have a yearly blood test.

When first diagnosed it takes a while for the hormones to build up in your system - about six weeks initially.

Gradually, with each increase we should begin to feel a little better with symptoms reducing. Sometimes that doesn't happy so quickly as we may have been years carrying on without realising we had low hormones and thyroid hormones run our metabolism so is very important. I'll give you a copy of symptoms of hypo.

thyroiduk.org.uk/tuk/about_...

If you have thyroid antibodies (ask doctor next time to check) you'd have an Autoimmune Thyroid Disease called hashimoto's.

If GP hasn't tested Vitamin D, Vitamin B12, iron, ferritin and folate ask for these to be done as well.

Blood tests for thyroid hormones should always be at the very earliest and don't eat before it. Also leave about 24 hours between your last dose of levo and the test and take it afterwards. This allows the TSH to be at its highest as doctors only pay attention to it.

Levothyroxine should be taken first thing with a full glass of water and wait about an hour before eating. Food can interfere with the uptake of the hormones.

mostlyhappy profile image
mostlyhappy in reply to shaws

I have a feeling my GP will stick to a low dose if my next results are within range, she is being very cautious. My mother has been on 100/day for as long as I can remember, I'll push for an increase.

shaws profile image
shawsAdministrator in reply to mostlyhappy

Do you have a heart defect that causes her to be cautious?

Maybe she doesn't just understand that we, the patient, will feel quite unwell till the dose is raised high enough.

There are several papers etc from scientists and called 'The Tyranny of the TSH' meaning the doctors pay more attention to it than the patients symptoms.

Just say you feel absolutely dreadful and have worse symptoms.

Even 100 is basic as we used to be prescribed between 200 and 400 of NDT.

If we take too much of thyroid hormones, we'd soon reduce due to the symptoms that would give us.

mostlyhappy profile image
mostlyhappy in reply to shaws

no heart issues! I'm normally pretty healthy apart from a couple of foot joints that flare up now and again. Good advice- I will stop apologising for feeling ill and lay it on a little thicker ;)

shaws profile image
shawsAdministrator

Its a huge learning curve and most of us who didn't get well on levo have recovered with advice since the forum began as doctors, apparently, have no knowledge about it except the TSH result. :)

SlowDragon profile image
SlowDragonAdministrator

Excellent advice from Seaside Susie - only thing I would add....is don't start all the supplements at once.

Start with just one, stick with just that for a week or fortnight, before adding another. That way if you get a reaction, good or bad, you can understand which supplement it is.

The only exception to that advice is ferratin. This needs Vit C at same time to help stop constipation.

Personally I started all my supplements low and slow ( I seem extremely sensitive to any changes)

I also found (the hard way) that I needed to start magnesium before vitamin D.

Gluten free may really help - many of us find it a revelation.

drgominak.com/vitamin-d-hor...

vitamindcouncil.org/tag/aut...

chriskresser.com/the-gluten...

mostlyhappy profile image
mostlyhappy in reply to SlowDragon

that sounds like very good advice, thanks Slow Dragon. I have ordered some high dose B12 and Vit D as advised, I'm already taking Ferratin, I'll start with them and then look at introducing the others. Lots of learning to do....

SlowDragon profile image
SlowDragonAdministrator

You may also need to experiment with different brands/methods of taking supplements.

Eg I started with Solgar vitamin D soft gels - started slowly at 1000iu ....increased to 6000iu daily. But after a month levels had barely moved & wasn't helping much ( I have gut/gluten issues so poor absorption) Tip from an endoscopy nurse put me on to trying Vit D oral mouth spray (by Better You ) - for me this works much better. Similarly I find the Better You B12 mouth spray very good too. Again this enabled starting slowly. Both widely available - eg at H&B

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