New tests results for Thyroid and vitamins

Hi, I'd be really grateful for some advice on my test results. I have extreme exhaustion and all Hashimoto's symptoms. This has been going on most of my life and I'm nearly 40, but has worsened a lot with unavoidable stressful events happening in my life over the last 4 or 5 years.

I had a thyroid antibodies test done in December which showed high, so it's likely Hashimoto's, Especially as my mum has all the same symptoms.

I Finally got my GP to recognise there was something wrong with my thyroid like I've been saying for years when my TSH eventually went a little out of range in November. I was eventually put on the tiniest dose of Levothyroxine, 25mcg, 2 months ago. And today my TSH has come back right down within range :-o but as people often say here, the labs now look normal but I still feel awful! My fear is now my TSH is normal the GP will stop my thyroxine whereas I'd been hoping she would double it to 50mcg!!! I don't think there's any chance of that now, with these results. Two days ago, After taking the bloodtest I decided to try 50mcg Levothyroxine and just see how I felt... it gave me such clarity (I struggle A Lot with brain fog...) but not "high" or hyper. It gave me the clarity to realise I need to change GP practice again as I'm just not getting the understanding where i am (current GP says "I'll probably never know what's wrong with me.... but stay positive..." and shuts the door on ideas for investigation). But now with these results come back, I think I should go back to 25mcg, or risk TSH going too low?? It's Very quickly gone down... on such a tiny dose of Levothyroxine. Can this really happen so quick? I went gluten free a month ago and have stuck to it, perhaps that has helped too, though I'm not especially feeling benefits...? And i take a tiny bit of adrenal glandular support (since end of Dec).

OK here are my results I got today.... I am assuming the ranges based on previous tests from the drs. But will be sure of these ranges next week.

TSH 2.8 mu/L (range 0.4-5.5)

Free T4: 16.1 pmol/L (range 11.5-22.7)

B12: 390 ng/L (range 210-910)

Folate 11 ug/L (range 5.4-24)

Ferritin 42 ug/L (range 10-307)

Vit D 62.6 nmol/L (range 50-150 adequate, below 50 not enough)

Before today, my TSH was 7.0 mu/L at the end of January this year, before i started any Levothyroxine or any thyroid treatment ever. And free T4 was 14.9 pmol/L end of January too.

My B12, vit D and folate are steadily rising. I used to be bottoming out in B12 and vit D but in range, and deficient in folate apparently for 7 years! So this is good progress over the space of 3 months.

But my ferritin is Stuck! I had a test for this in November and it was 50 ug/L. I supplemented a little bit and retested end of January and my ferritin went Down not up! Unlike my other vits. It went down to 42 ug/L where it has stayed since then, despite upping my supplements... So I'm confused on this.

Has anyone got any thoughts on any aspect of all this? Sorry for the long email....

Many Thanks xx

10 Replies

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  • tinkerbell22 Your GP shouldn't take away your Levo, it's not like an aspirin where a headache will go away, the aim of Levo is to get your TSH in range and keep it there. Stopping the Levo will make it go back up again.

    From ThyroidUK's main website > Hypothyroidism > Treatment Options

    ' According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

    Dr Toft 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)." '

    Dr Toft is past president of The British Thyroid Association and leading endocrinologist.

    If you email louise.roberts@thyroiduk.org.uk she will send you a copy of the article, highlight question 6 and show your GP.

    High antibodies mean that you are positive for Hashimoto's. To help reduce the antibodies TSH should be suppressed, so no way should you reduce your Levo, you need it as low as possible.

    Also, supplementing with selenium L-selenomethionine 200mcg daily and keeping to a strict gluten free diet help reduce antibodies.

    Your B12 will be optimal at the top of the range, even 900-1000 is recommended.

    Folate should be at least half way through it's range.

    Vit D is recommended to be 100-150nmol/L.

    Are you taking your iron supplements with 1000mg Vit C to aid absorption and help prevent constipation? Another way to help raise ferritin is to eat liver once a week which is what I do. Do you take your iron tablets at least two hours away from other supplements and do you take Vit D with the fattiest meal of the day? Do you take Vit D's important co-factors K2-MK7 and magnesium?

  • Thank you so much for your indepth reply SeasideSusie, and i keep meaning to say i love your dog profile pic!

    Yes this is all why i feel I need to change drs again. I only changed to this surgery in December! There's a GP I spoke to on 111 in November I've tracked down and am going to get on his books, as he said I should be tested for thyroid antibodies and regardless treated based on symptoms...! Music to my ears! My current GP won't accept my antibiodies as being Hashimoto's. She said i must have just had a cold..... in my moment of enlightenment yesterday I fully accepted i have rheumatoid arthritis symptoms too. And this drummed it home that I must get the autoimmune diagnosis and put these pieces of the puzzle together. My mum and her mum have/had rheumatoid arthritis too... I need a dr who will see the autoimmune connection and help me work on the root causes.

    The reason i think my current GP may stop my levo is that she said when she prescribed it that she didn't really think my thyroid was the problem and that I probably just need a little levo to bring it within range and then that's it. Suggesting she'd bring it within range and then stop.

    Hmm from what you've said maybe I shouldn't panic about the extra levo I took yesterday and today? Perhaps my TSH can go lower and my free T4 higher. But I think it's wise to just keep to the prescribed dose of 25mcg until I see the new GP. Though I'm desperate for physical changes... i really can't keep on like I am much longer or risk not being able to pay my bills...

    I tried taking natural thryoid glandular, the metavive variety, but it sent my mind hyper :-o I found on STTM that this can happen because of the T3 in natural thyroid, if you are low in iron, which I am... hence I'm quite keen to up my iron!

    I had a Blue Horizon T3 blood test in December and it was midrange. Then I did a Genova urine test straight after and both T3 and T4 were in range but very low. I'd be very interested to see what my T3 is now, but my current GP won't check it and i can't afford to pay for it. So I'm hoping my new GP might...

    I've been keeping strictly to the gluten free diet ;) and though I don't necessarily see results from it I feel it's the right thing to continue and maybe I'll see results in time more obviously.

    Selenium I haven't tried yet but would like to at some point. I didn't want to confuse the test results having just started levo.

    Thank you for all your advice! That's very useful to know all the recommendations re vits too. Yes i take iron with vit C as I read that helps. I will buy some liver, I've been eating a lot of beef but seems that isn't enough. I didn't know I need 2 hours separation between iron and other supplements... only that I shouldn't take it within 4 hrs of levo. Do you need 2 hours either side of iron? Or 1 hr before and 1hr after, total 2 hrs?

    I've not been taking vit d with fatty foods, I forgot or didn't know that...! Thanks! I often take some before sleep as it makes me tired... I split all my vits into small portions as I'm incredibly sensitive to everything I take... so vit d for example I take across the day in small amounts or a bigger amount before sleep where I can sleep it off.

    Magnesium i seem to struggle with, but need it I feel.

    K2-MK7 I haven't got any of this yet. I'd heard of a spray that contains this and vit d together which I'll buy once my current spray runs out.

    Thank you so much xx

  • "Do you need 2 hours either side of iron? Or 1 hr before and 1hr after, total 2 hrs?"

    Two hours either side.

    With magnesium, you could try it in powder form. I use Natural Calm Magnesium Citrate powder (I get mine on Amazon) and start with a small amount and build it up. Or there is magnesium oil spray.

  • Thank you lots SeasideSusie :) xx

  • Tinkerbell22,

    There is scope to increase your dose to bring down TSH level. I would try 50mcg if you have sufficient Levothyroxine. If TSH becomes too suppressed you can try 25/50mcg alternate days. Unless you know the same lab was used by both GP practices you can't assume the lab ref ranges are the same.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    If ferritin is decreasing you aren't taking enough iron. How much iron are you taking?

    VitD needs to be around 75-100nmol/L. I would supplement 5,000iu daily for a month then reduce to 5,000iu alternate days and retest in July. VitD should be taken 4 hours away from Levothyroxine.

  • Thanks so much Clutter :) helpful as ever!

    That's a good idea re levo.

    I struggle with all my vit supplements as I'm very sensitive, so I break them down into smaller portions that I can take regularly. If I take a full iron tablet I don't feel good! But I can split it in half or a 3rd and tolerate it fine. I'm the same with all vits and adrenal glandular! Only levo and omega 3 can I tolerate in one full dose...

    I've kept all supplements 4 hrs apart from levo, including the adrenal glandular but are there some things that don't affect levo so I have more leeway? Xx

  • Tinkerbell22,

    For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

  • Thank you for clarifying :)

  • firstly start eating liver because apparently in some people it raises ferritin much better

    as for TSH 2.8 is not low

    any corre tly treated hypothyroid patient should have a tsh of 1.0 or below and freet4 and freet3 both in balance and near top of their ranges

    email louise.roberts@thyroiduk.org.uk for a copy of Dr Tofts Pulse article which is written for GPs own magazine and give that to your GP

    do be very sure to arrange all tests for early morning ,fasting and never never take your levothyrocine in the previous 24 hours

  • UPDATE ... I ditched the GP after these test results came through! as I knew the battle to continue working on my thyroid levels with her would be too much for me! And I also realised I have been ignoring rheumatoid arthritis symptoms (see another post from me). So I needed to find a GP who would accept I have an autoimmune problem. My current GP just wasn't doing this.

    So I sought out a GP I spoke to via 111 in November who had said antibodies mean autoimmune. I moved to his practice last week And saw him last week and Finally I have official confirmation it's autoimmune and he even wrote it on my medical record :)

    Thanks everyone for the encouragement to push for higher levothyroxine. This helped me see I was fighting a losing battle with my current GP.

    My new GP has put me on 50mcg. He grimaced at my low dose of 25mcg. And didn't bat an eyelid at my latest TSH. Going by symptoms not the tests!! What a gem :)

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