Hello, I am new here and would very much apprec... - Thyroid UK

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Hello, I am new here and would very much appreciate some advice please

Rav4 profile image
Rav4
15 Replies

I had a partial Thyroid removal in 2006 and have been on various doses of Levothyroxene over the years, from 0 to 125mg and everything in between up and down continually. I have been on 100mg for the past 5 years even though I have been tested every 3-4 months and the results have been between 0.02- 0.14 and outside the recommended range. I have seen different GPs at my practice and they all say stay on the 100mg. ( One actually said they were nervous to mess about with the dose). Following advice on this site to other people I had a private test done and I would very much appreciate your advice on what I should be saying to my GP when I eventually manage to see them in 2 weeks time.

My results were as follows:

CRP 5.43 (Range<5)

FERRITINS 116ug/L ( Range 13-150)

Serum Folate 5.76ug/L (Range >3.89)

Active B12 54.000 pmol/L ( Range 50-175)

25 OH Vitamin D 43.4 nmol/L( Range 50-175)

TSH 0.103 Range (0.27-4.2)

FREE T3 4.92 pmol/L (Range 3.1-6.8)

FREE THYROXINE 20.200 pmol/L ( Range 12-22)

Thyroglobulin Antibody <10kU/L ( Range <115)

Thyroid Peroxidase Antibodies <9.0 klU/L (Range <34)

Many thanks in advance for your help, so glad I found your site!

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SeasideSusie profile image
SeasideSusieRemembering

Rav4

Have you always done your tests at the same time of day and under the same conditions, that's the only way they can be compared.

When booking thyroid tests, we advise:

* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* Leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Your CRP is raised slightly, this could be due to infection or inflammation. Might be worth checking again sometime.

Ferritin is fine.

Active B12 54.000 pmol/L ( Range 50-175) - that's not the correct range, you've put the Vit D range here.

This low. Anything below 70 suggests testing for B12 deficiency, see:

viapath.co.uk/our-tests/act...

Reference range: >70*; * between 25-70 referred for MMA

Check for signs of B12 deficiency here:

b12deficiency.info/signs-an...

Any that you have, list them to discuss with your GP and ask for further testing. Don't supplement for this until further testing has been carried out.

Serum Folate 5.76ug/L (Range >3.89)

Although over the low limit, this isn't very high. Once testing for B12 deficiency has been carried out and B12 injections or supplements started, then introduce a good B Complex such as Thorne Basic B or Igennus Super B. Do not start this before further testing for B12.

25 OH Vitamin D 43.4 nmol/L( Range 50-175) [17.36ng/ml]

This is low. The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml). For your current level they recommend supplementing with 4,900iu D3 daily (nearest equivalent is 5,000iu).

vitamindcouncil.org/i-teste...

There are important cofactors needed when taking D3 as recommended by the Vit D Council - vitamindcouncil.org/about-v...

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 if taking tablets/capsules/softgels, no necessity if using an oral spray 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 if taking tablets/capsules, no necessity if using topical forms of magnesium. naturalnews.com/046401_magn...

Check out the other cofactors too (some of which can be obtained from food).

When you've reached the recommended level then you'll need a maintenance dose to keep it there, 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 an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

TSH 0.103 Range (0.27-4.2)

FREE T3 4.92 pmol/L (Range 3.1-6.8)

FREE THYROXINE 20.200 pmol/L ( Range 12-22)

When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. Your FT3 is a bit low at 49% through range, with your FT4 82% through range, so not really in balance which shows conversion not as good as it could be. However, optimising your nutrient levels should help conversion, as can supplementing with selenium. I think your first step is to address your nutrient levels, optimise them all and see how this affects your levels. If FT3 is still low once nutrients are optimal, it may be worth considering adding T3 to Levo.

Thyroglobulin Antibody <10kU/L ( Range <115)

Thyroid Peroxidase Antibodies <9.0 klU/L (Range <34)

Have you had thyroid antibodies tested before, if so have they ever been higher in range or over range?

Rav4 profile image
Rav4 in reply toSeasideSusie

Thank you for getting back to me so quickly, Sorry, yes the B12 Range should read 37.5-188.

I have always tried to have blood tests as early as possible in the morning , and not taken Levothyroxene for 24 hours prior, but never fasted before.

No I have never had thyroid antibodies tested before so have nothing to compare.

Wasn't sure If I should push my GP to reduce my dose of Levothyroxene to 75mg.

SeasideSusie profile image
SeasideSusieRemembering in reply toRav4

Is there a reason why you want your Levo reduced? That will reduce your FT4 which will most likely also reduce your FT3 and you may start to experience symptoms of undermedication/hypothyroidism.

If you think that because it's below range that it is a problem, it's not. It's the thyroid hormone levels that matter - the FT4 and FT3. TSH isn't a thyroid hormone, it's a pituitary hormone and it tells the thyroid to produce more hormone when it detects there isn't enough. When you're taking exogenous hormone then the pituitary detects that and the signal doesn't need to be sent and TSH tends to stay low unless you're seriously undermedicated.

Rav4 profile image
Rav4 in reply toSeasideSusie

Yes I was worried it was below range as I had heard over medicating for long periods can lead to Osteoporosis.

SeasideSusie profile image
SeasideSusieRemembering in reply toRav4

I think you have to weigh things up and decide what you want to do.

Be undermedicated for your hypothyroidism and lead a pretty miserable existence due to being constantly tired, slow metabolism, overweight, and everything else that goes with it that affects you personally and your family.

Or you can take the correct amount of hormone replacement that your body needs for you to hopefully feel well enough to lead a normal life.

As far as Levo causing osteoporosis is concerned, I have been taking Levo since 1975, so 44 years, the last 25 of those I have kept a record of my test results. In that time my TSH has been below range for all but 2 tests when it just scraped into range. Most often TSH has been, and still is suppressed and where the testing equipment records low enough it has shown <0.005. I am now 71 and I don't have osteoporosis.

And you have to remember that people who don't take Levo develop osteoporosis.

Personally, I think life is too short to worry about the "what ifs". What will be will be, and we can't change that.

PS - low TSH isn't overmedicated. Over range FT3 is overmedicated.

Rav4 profile image
Rav4 in reply toSeasideSusie

Yes, I see what you mean, life is too short to worry about the what ifs! And I would much prefer to feel well! Thank you for all your helpful advice.

Rav4 profile image
Rav4 in reply toSeasideSusie

Thank you very much for your advice.

helvella profile image
helvellaAdministrator in reply toRav4

Wasn't sure If I should push my GP to reduce my dose of Levothyroxine to 75mg.

You know, you don't actually have to adjust your dose by 25 micrograms a day (i.e. down by a whacking great 25% if you drop from 100 to 75).

Have a look at my document about making small adjustments. Even if you did end up on 75, you could have done so gently and without the risk of suddenly being significantly under-medicated.

dropbox.com/s/sllu21khbeyth...

And I agree with SeasideSusie and her reply to you.

Rav4 profile image
Rav4 in reply tohelvella

Many thanks, I will have a look at your document as suggested.

Nanaedake profile image
Nanaedake

Can I ask why you had a partial thyroid removal? Best suggestions could vary according to reasons for surgery.

Clearly vitamin D is below sufficient range but GP may not offer supplements or may only offer 800iu D3 which may not be enough so you may need to buy your own. Critical to optimise vitamin D levels for best health. Hopefully someone else will give you advise on how much would be best to bring your level up quickly.

CRP is very slightly over the range so unlikely to be significant as far as GP is concerned but you could still ask. Have you had any kind of infection recently?

Rav4 profile image
Rav4 in reply toNanaedake

Thank you for your quick response. I had a goitre on my Thyroid hence the partial removal.

I have had problems with a cough/ clearing my throat for years now, and have finally seen a Dr who has sent me for various tests for Asthma and reflux, but can't find anything.He is now sending me for an ultrasound on my throat, as I feel that is where the problem lies.I don't know if that would affect the CRP.

Nanaedake profile image
Nanaedake in reply toRav4

It's impossible to say what is raising your CRP without further investigations. It sounds like your GP is looking into it. A persistent cough could be caused by a number of things but it sounds like it's worth pursuing because you are not feeling well.

You've been given great advice about optimising vitamin levels. I would follow it as I also had a partial thyroidectomy for different reasons and slowly improved when I worked on my vitamin levels.

I have found that very small changes in levothyroxine dose make a very big difference. For example, my thyroid hormone levels are about the same as yours on 100mcg of levothyroxine. If I drop my daily dose by 25mcg my TSH will rise to over 10 within 6 weeks. So if you make any changes to your levothyroxine dose then I would do it very gradually. For example, if you take 100mcg levo daily then on only one of the days of the week (say Saturday) take 50mcg but keep all your other daily doses the same at 100mcg.

I think it's possible that when you have a partial thyroidectomy you can be very, very sensitive to small changes in thyroid hormone from external source.

If you are in the UK, then from 2005 to 2015, the quality of levothyroxine thyroid hormone in the UK was deficient. In 2013 the human medicines regulator MHRA did a review of levothyroxine and changed the classification and the tests required for drug production. I think the last of the old batches were cleared off shelves by 2015 so that you should now be getting better quality levothyroxine with consistent potency and absorption. It might explain in part why your thyroid hormone levels varied in the past?

If you switched brands in the past, they were not equivalent in potency and effect even through the tablet box said you were taking the same amount of the hormone, now they are more tightly regulated, they should be within a 10% tolerance. Nevertheless, it's a good idea to stick to one brand that suits you and don't switch between brands.

Ensure you take levothyroxine as per the advice you've been given here to ensure that nothing interferes with absorption.

Rav4 profile image
Rav4 in reply toNanaedake

Thank you, I will focus my attention on improving the vitamin levels before I have another blood test.

SlowDragon profile image
SlowDragonAdministrator

Getting vitamins optimal is first step.

B12, folate both are too low

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D, aiming to improve to at least 80nmol and around 100nmol is often better

Then retesting TSH, FT3 and FT4

Likely to need dose increase in Levothyroxine or if FT4 is still at top of range, then likely to need addition of small dose of T3

Osteoporosis can be due to low FT3

tiredthyroid.com/blog/2012/...

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 at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

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

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Rav4 profile image
Rav4 in reply toSlowDragon

Many Thanks for your advice.

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