Total thyroidectomy, remnants and euthroyx. - Thyroid UK

Thyroid UK

137,809 members161,639 posts

Total thyroidectomy, remnants and euthroyx.

35 Replies

Hi,

My latest results on 75mg Euthroyx TSH - 1.32 mlu/l (0.27 - 4.20) FT4 - 21 pmol (12-22 pmol).

My endo has me changing my meds up and down as the meds give me heart palpitations, I don't sleep, sweating, hives and I feel like my throat is swelling but he wants me to try taking 100mg and then pushing for 125mg by December saying my body will get used to the meds eventually. The surgeon who performed my total thyroidectomy says the remnants won't make a difference on my blood results.

Any advise on whether to up my meds or not as I feel so despondent at the moment.

Thank you

Read more about...
35 Replies

it’s correct that ‘remnants’ won’t affect blood results. Was your TT for thyroid cancer? If so, keeping your TSH below 0.1 will prevent recurrence and this is probably what they’re aiming for. If you’ve had Thyroid Cancer, then you should have an annual Thyroglobulin test to check that there’s no cancer lurking.

You haven’t given an FT3 result. This is essential. In my case, they kept pushing up my dose of Levo until it was sky high to get a reasonable FT3 score. Finally, after being messed about for a very long time, they discovered that I didn’t convert T4 to FT3 and I was given combination therapy of T3 / Levo.

It’s important that you don’t have high FT4 and low FT3 or you’ll feel dreadful. Looking at your results, FT4 is too high. Insist on having an FT3 test before anyone even thinks about increasing your Levothyroxine

They can’t increase FT3 or suppress TSH with Levothyroxine alone in a non converter

Silly people 😞

Wishing you well 😉

in reply to

Hi Everywhere2,Thank you for replying.

My thyroidectomy was for graves disease, my FT3 is 4.4 (2.6- 5.4 pmol).

in reply to

Then your TSH isn’t a crucial issue but the low FT3 and very high FT4 suggest that you are not converting well. Pumping up FT4 won’t help at all.

I speak from experience. After a TT, a very stupid and inexperienced doctor increased my Levo dose to 200 mg to try to increase FT3. It didn’t work. I ended up with an FT4 of 42 (12 - 22) and a long holiday in bed as I was so ill

in reply to

Thank you Everywhere2

pennyannie profile image
pennyannie

Hey there again :

You must now be managed and dose adjusted - not on TSH reading - but on your Free T3 and Free T4 results and ranges - were these ever run after surgery and the T3 ' just missed off ' from your results above - as Free T3 is the most important blood test reading post a thyroidectomy.

T4 is a prohormone and pretty much inert and the body needs to be able to convert this inactive thyroid hormone into T3 in the liver - and since you have lost your own thyroid you have lost your own thyroid production of T3 to kick start the process of converting the T4 into T3.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 said to be around 10 mcg + a measure of T4 said to be at aroud 100 mcg :

Some people can get by on T4 only medication:

Some people find at some point i time T4 doesn't work as well as it once did and by adding in a little T3 to replicate that ' little bit lost ' their T3 / T4 hormonal balance is restored.

Others can't tolerate T4 and need to take T3 only - Lothyronine:

Whilst othrs find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

You can live without T4 but you can't live without T3 - and we have no T3 blood test result ?

Cnversion of T4 into T3 can also be compromised by low levels of ferritin, folate, B12 and vitamin D so have you any blood tsts as these need to be maintained at optimal levels for optimal absorption and conversion of the T4 thyroid hormone replacement.

I think I shared Elaine Moore's website with you previously - sorry, should have looked back and risk losing this if I do so now, but here it is again elaine-moore.com :

Ok - I did - so if you don't know how to find your previous post and all your replies simply press the Profile icon top right on this page :

in reply to pennyannie

Hi pennyannie,Thank you for replying. All my vitamin tests came back with him saying they are perfect. My FT3 is at 4.4 (2.6 - 5.4 pmol)

pennyannie profile image
pennyannie in reply to

I'm afraid ' perfect - good - fine ' are just opinions as everybody's understanding of optimal is different - so please ask for copies of all blood test results and ranges.

OK - so your T3 was 4.40 so around 64% with a T4 at 21 and 90% through it's range :

The accepted conversion ratio is said to be 1 / 3.50 - 4.50 T3 / T4 and applicable once the T4 is up in the top quadrant of it's range - and we generally feel best when we come in this range at 4 or under.

With your T4 at 90 % - we can apply the conversion ratio by dividing your T3 into your T4 and I'm getting your ratio coming in at 4.77 - so wide of the range.

I've seen a lot worse - ( mine was 5.50 and seen others over 6 ) and maintaining optimal ferritin, folate, B12 and vitamin D could well be part of the answer to improving your overall health and well being.

The thyroid is a major gland responsible for full body synchronisation from your physical through to your mental, emotional, psychological and spiritual well being - your inner central heating system and your metabolism - and living with Graves Disease will take it's own toll on the body.

Are you registered for online access to your medical records and ' can go in at your convenience ' and share these vitamin and mineral readings and ranges with forum members as they are an intergral part of your recovery and long term the thyroid jigsaw puzzle.

in reply to pennyannie

Vitamin B12 350 pmol (>138 pmol)S.cortisol - 466 nmol ( am 101 -535 / pm 79-477)

Vitamin D25 - 23 ng/ml ( 20 ng/ ml sufficiency)

S.alkaline phosphatase 195 iu/L (51 - 117 iu/L)

S.potassium - 4.0 mmol/L (3.5 - 5.1 mmol/l)

S.ferritin - 42 ng/ml (20 - 300 ng/ml)

S.ransferrin - 40.9 umol (20.2 - 44.8 umol)

S.iron - 9.3 umol/L (9.0 -30.4 umol/L)

S.folate - 18.7 nmol

Tsh receptor antibodies - 0.89 iul/L (<1.80 iu/L)

Calcium - 2.42 mmol (2.10 - 2.55 mmol)

P glucose - 4.9 mmol/L (3.3 - 6.0 mmol)

S.immuniglobulin E - 188.0 ku/L ( 0.0 - 100 ku/L)

Anti nuclear factor - negative

ds DNA antibodies - negative

The results I received.

pennyannie profile image
pennyannie in reply to

Thank you -

I can't answer all of these - but just for your own reference - the ranges put the result into context and generally speaking for core strength vitamins and mineral we need a good 50% through any range :

When I was researching my low ferritin ( 22 ) I read that no thyroid homone replacement work optimally until this mineral is up and maintained at over 70 :

I now aim to mainti my ferritin at around 100 - folate at around 20 - Active B12 75 ++ ( serum B12 500 ++ ) and vitamin D at around 100 :

Are you supplementing anything and did you stop supplementing around a week before these blood tests were run so we measure what your body is holdng rather than recently ingested ?

Vitamin D and ferritin are obviously much too low :

Is the B reading ' active or serum " B12 ? as the reading seems to say over replaced ?

I don't know much about alkaline phosphatase - but your reading is over range - it's to do with the liver and may have a bearing on your absorption and conversion of T4 into T3.

Similarly immuglobulin E is over range - and my knowledge limited here as well.

in reply to pennyannie

Hi pennyannie,I take the supplements once a week, I found that taking the selenium seemed to boost the euthroyx. I have an allergy that's damaging my liver but they aren't sure if it's to the euthroyx but it's the only meds I take besides the vitamins.

pennyannie profile image
pennyannie in reply to

Ok - so what are the supplements do you take weekly and what vitamins are you referring to ?

in reply to pennyannie

I take iron (calciderol), selenium, zinc, magnesium, b12, boron, L-tyrosine and folic acid.

pennyannie profile image
pennyannie in reply to

Is this 1 tablet once a week - or several - please specify as this doesn't make sense as it stands :

in reply to pennyannie

I take 1 tablet of each once a week.

pennyannie profile image
pennyannie in reply to

and the strengths - and the timings of each as iron must be taken away from all other supplements and well away from T4 medication :

This is getting very complicated and beyond my comprehension - and obviously whatever you are doing is not working as your ferritin and vitamin D are very low and your B12 a question mark ( active B12 or serum B12 ) and maybe over range with your folate possibly the only one near optimal.

greygoose profile image
greygoose in reply to

Vitamin B12 350 pmol (>138 pmol)

This is not over-range, it is too low and the range is not a range! Anyone with a B12 of 138 probably has Pernicious Anemia it is so low. Yours isn't much better. It should actually be over 550.

Taking one pill (of how much?) once a week is not going to raise it much. And, besides, you cannot just take one or two B vits in isolation because they all work together and need to be kept balanced.

So, what I suggest is sublingual methylcobalamin (B12), 1000 mcg, DAILY. PLUS one pill good B complex (with methylcobalamin and methyl folate, not folic acid) DAILY.

I take iron (calciderol)

Do you mean you take iron AND calciderol? Because calciderol is not iron, it's vit D. And, if you're taking vit D, you also need to take vit K2-MK7 and magnesium.

And, if you're taking iron, you also need to take vit C. And take it at least two hours away from everything else, and four hours away from thyroid hormone.

Did you get your zinc tested before supplementing? Very important to know if you need it. Although, probably, once a week won't make much difference to anything. These nutrients need to be taken daily - or at least every other day when levels improve a bit.

Batty1 profile image
Batty1 in reply to

S.alkaline phosphatase 195 iu/L (51 - 117 iu/L) … this test is out of range.

en.m.wikipedia.org/wiki/Ele...

in reply to Batty1

Hi Batty1,This is my liver results, my endo said drug intoxication and the reason he lowered my euthroyx back down to 75mcg.

Batty1 profile image
Batty1 in reply to

You had Graves’ disease … Graves can elevate this level .

in reply to Batty1

Before my total thyroidectomy my levels were near the 400 mark and told the meds then were causing my liver to fail because i was allergic and the reason I actually had the operation.I was told I would take 1 herbal pill after the thyroidectomy and my problems would be solved.

Batty1 profile image
Batty1 in reply to

Herbal pill ?

in reply to Batty1

Yes, that's what the endo told my husband and I, I would never have had the operation if I knew what I know now.

Batty1 profile image
Batty1 in reply to

I that everyday …. If only I knew!

DippyDame profile image
DippyDame

My thyroidectomy was for graves disease, my FT3 is 4.4 (2.6- 5.4 pmol).

My latest results on 75mg Euthroyx TSH - 1.32 mlu/l (0.27 - 4.20) FT4 - 21 pmol (12-22 pmol).

Were these results from the same test?

If not, you need another test to include

TSH, FT4, FT3, folate, ferritin, vit D, vit B12.

Vital that above nutrients are optimal.

Your FT4 is already at the top of the ref range on 75mcg Euthroyx(it's mcg not mg) so increasing up to 125mcg is going to push level well over range

Your surgeon should know that high FT4 increases a cancer risk!

Excess unconverted T4/ levo will convert to reverse T3 which will be metabolised and eventually be excreted ...having been of little or no benefit

They are no doubt dosing by TSH which science proves is not a reliable marker.....FT3 followed by FT4 are the important labs.

Your endo is clueless...your body will not "get used to the meds eventually" you will feel increasingly unwell if he pushes levo to 125mcg.

Were you on a steady dose off T4 ( 75mcg) for at least six weeks before the test?

Did you leave a 24 hour gap between last dose of T4 and the test?

If not these labs may be skewed.

If we use the above labs it looks as if your T4 to T3 conversion is reasonable....though I find that a little hard to believe. Hence the questions about testing protocol.

Once you can confirm whether or not the above labs were from the same test and under what conditions the test was done then we can hopefuly make some progress!

Take care

in reply to DippyDame

Hi DippyDame,I was having chest pain and taken to the doctor in the afternoon, this is the blood work that came back as they were worried I was having a heart attack. I hadnt eaten or taken any meds since the previous morning.

Up until early July I was taking 25mcg, dosage increased to 50mcg in July , dosage increase to 75mcg in August, dosage increase to 100 mcg October, I had heart palpitations and reduced to 75mcg again.

pennyannie profile image
pennyannie in reply to

I have just been reading your back story - and am so sorry with what you have been through -

Graves can be triggered by a shock to the system and guess breaking your hip - kick started this roller coaster of events - or conversely, undiagnosed Graves symptoms caused the fall.

I'm astounded that you had a thyroidectomy last year and read above that up until July this year you were only on 25 mcg T4 monotherapy.

Please start rebuilding your ferritin once the iron panel has been run and you have the all clear - and build up your vitamin D so to be able to tolerate better increases in any or all of the thyroid hormone replacement options.

Sorry if some of my typing skips letters - I'm currently with mild concussion and my vision a little ' off ' :

in reply to pennyannie

Thank you for you advise pennyannie, hope you feel better soon.

pennyannie profile image
pennyannie in reply to

I've just been looking back again - there is nothing on your profile page -

Can you please complete this as it helps get a better understanding of where the patient is in the World - your age - and other health issues you maybe having to deal with.

in reply to pennyannie

I will do that, thank you pennyannie.

SlowDragon profile image
SlowDragonAdministrator

vitamin d

Aiming for around 40ng/mL (that’s 100nmol in U.K. units)

Ferritin needs improving

Get full iron panel test to check if iron if low too

As you have Graves’ disease get coeliac blood test before considering trial on strictly gluten free diet

in reply to SlowDragon

Hi SlowDragon,Thank you for replying.

I will increase my iron and get that tested.

My celiac test results:

s-IgA - 1.65 gls (0.41 3.49 g/L)

TTG IGA - 0.3 Eli U/ml (<7.0 Eli U/ml)

helvella profile image
helvellaAdministratorThyroid UK in reply to

It might not be the amount of iron alone - but the form in which you are taking it.

helvella - Iron Document

This is a summary of what I have read up and found out about iron supplements over the past few years. I am not in any way medically trained. You are strongly encouraged to check every detail before making any decisions for yourself.

helvella.blogspot.com/p/hel...

in reply to helvella

Thank you helvella

SlowDragon profile image
SlowDragonAdministrator in reply to

So coeliac test negative.

Suggest you consider trying gluten free

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

in reply to SlowDragon

Thank you SlowDragon

You may also like...

Total thyroidectomy remnants/ recurrence

I had a total thyroidectomy last year for graves disease. Throat scan 2 weeks ago shows recurrence...

Total thyroidectomy soon...

feeling better and just waiting for total thyroidectomy on 23rd December. After I'm going to have...

Impact of a total thyroidectomy

investigate a lump in my neck last week, I now have the results from my GP. There is a goiter...

Total thyroidectomy few questions

you usually stay in hospital for? I'll be put on meds as itis a total removal, the nurse at my...

Total thyroidectomy tommorow

Hi everyone, Just wanted to say wish me luck for tommorow lol I'm feeling very anxious and scared...