I don't understand: Alternately titled: 'Here we... - Thyroid UK

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I don't understand

lau99 profile image
12 Replies

Alternately titled: 'Here we go again'...

Just got back some blood results from a test I did yesterday morning at 11am - I've been on 150mcg Levo and 10mcg T3 since October/November, I believe. I did the usual 24 hours of not taking my medication before the blood test (although the NHS doesn't like that) but my bloods are...quite frankly insane. I'm completely shocked.

T3: 2.3 (3.1-6.8)

T4: 8.6 (12.0-22.0)

TSH: 35 (0.27-4.20)

Granted I don't feel great, but I don't...really feel that bad? Kind of same-old same-old as far as being hypo goes. Is that because I've been taking T3? Or is it just a matter of time? Either way, I'm really dreading my next endo appointment now...he's definitely going to take my T3 away and increase my T4. I'm so sick of this...

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lau99
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12 Replies
tattybogle profile image
tattybogle

Oh .. see what you mean ... i dunno what's going on there. I mean they look like you haven't taken anything at all for at least a couple of weeks, but obviously you have ... so erm ?

Adding T4 can sometimes lower fT4 a bit , but both fT4 and fT3 are under range and TSH is crazy .

He's no grounds to remove your T3 though surely .. since fT3 is under range., and TSH clearly seems to be saying 'undermedicated' which fits with the below range fT4and fT3.

I would have though he should increase both Levo and T3 (but not both at the same time)

If you'd left the recommended 12hrs from last dose T3 then fT3 might well have been in range , but it almost certainly wouldn't be anything like 'high'

lau99 profile image
lau99 in reply totattybogle

I'm completely stumped :( I haven't been close to this bad since 5 months after my TT when I had been left on 75mcg of Levo alone. These results are incomprehensible to me. The last time, when he oversaw my first 3 month T3 review and my bloods were (somewhat) hypo then, he insisted on taking away the T3 'just to see' because he panicked and thought that an ingredient in the tablets must be making me hypo. He'll definitely try to pull the same thing again, or accuse me of non-adherence.

tattybogle profile image
tattybogle in reply tolau99

Mmm . "an ingredient in the T3 making you hypo " ? can't see how that's supposed to make sense. If he says that again, ask him to try a different brand of T3 with different 'ingredients' ?

There no way the T3 'itself' can make you hypo . that's just illogical.

I agree .... he'll almost certainly think you have been 'non adherent ' .... even if he doesn't say it to your face. But that does seem to be their first/only thought whenever they see some results that are confusing.

You could always ask him to recheck you TRab (Thyroid stimulating hormone Receptor antibodies ~Graves antibodies)

did you know there are 3 types ?

~ 'neutral ' ones .. (not sure what they do .. 'not a lot' i think )

~ 'Stimulating' ones that cause Graves hyperthyroidism (high T4/3)

~ 'Blocking ' ones that actually cause Hypothyroidism .. they block your TSH from getting onto the TSH receptors, and so the thyroid isn't stimulated, so T4 goes low , and so TSH actually goes up quite high .....

OK since you no longer have a thyroid i am really not sure what happens then if you suddenly have a load of the 'Blocking' sort, and i can't actually get my head round it at the moment .... BUT (i'm clutching at straws here) ... ? having to think about it might just give him something else to focus on other than removing your T3 and/ or assuming you didn't take it. ?

SlowDragon profile image
SlowDragonAdministrator

Last dose levothyroxine should be 24 hours before test

But day before test you should split T3 taking last dose T3 approx 8-12 hours before test

First thing to request is a repeat test via different laboratory

See if there’s possibility the test was compromised

Are you taking any supplements that contain biotin?

Biotin can falsely affect test

Which brand of levothyroxine are you currently taking

Do you always get same brand

Are you on strictly gluten free diet or dairy free diet

Suggest you increase levothyroxine by 25mcg initially

Ever tried liquid levothyroxine…..ask endo if you can trial liquid version

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

lau99 profile image
lau99 in reply toSlowDragon

Thank you for the suggestions, SlowDragon. I think I'll definitely look into getting another set of bloods...I'm not sure how exactly these might have been compromised but they make absolutely zero sense, so I guess it could be a possibility? I always get the same brand, don't take any other supplements, and am not gluten or dairy free.

SlowDragon profile image
SlowDragonAdministrator in reply tolau99

Could be this mouse 🐁 interference ncbi.nlm.nih.gov/labs/pmc/a...

Has come up as issue for 1 or 2 other members

But the fact your Ft4 and Ft3 also very low might mean you really are that hypothyroid

Request GP/endo retest bloods

Assuming test is correct

Request liquid levothyroxine trial

SlowDragon profile image
SlowDragonAdministrator in reply tolau99

When were vitamin D, folate, ferritin, and B12 last tested

What vitamin supplements are you currently taking

As you previously had Graves you may find it helpful to be on strictly gluten free diet

But get coeliac blood test done BEFORE cutting gluten out

pennyannie profile image
pennyannie

Hey there :

Haven't we been here before in some shape or form ?

Trouble with absorption - ask for liquid T4 :

No biotin for the week before the blood tests :

Any Covid booster vaccine recently ?

Some thing clearly wrong with the blood test analysis if you feel no worse than usual ????

lau99 profile image
lau99 in reply topennyannie

Hi Penny, Yes, it seems so...I just really wasn't expecting these results at all given the amount of medication I'm on. The last endo I saw told me that she had patients who were "worse off" than me, so I therefore don't need a trial...

I don't take any other supplements, and had my last covid booster in mid December.

I'm really lost for words, too...I felt a lot worse when my TSH was 10 than I do now, so maybe I'm just used to not feeling good?

pennyannie profile image
pennyannie in reply tolau99

Well - I'm sorry but this endo's comment says more about her lack of knowledge than anything else :

You are bound to be in a quandary - when unwell for any length of time your do start to question yourself as your mind looses it's sharpness and you become vulnerable and why you need a trustworthy professional who has a proven track record in getting people better.

If these doctors were" first doing no harm " you wouldn't have been pushed around, from pillar to post and your Graves and thyroidectomy recovery better managed.

I imagine you on a roller coaster of emotions these past 3 years orso.

Have you asked to try liquid Levothyroxine ?

Is your SIBO under control now ?

Maybe this is the reality and where you are - what were the results last time around and has the prescription changed since these 2 blood tests ?

Please keep an eye on your ferritin, folate, B12 and vitamin D as these levels look too low to allow metabolism of core strength nutrients through food.

Meanbeannyc profile image
Meanbeannyc

Absorption problem seems to be very apparent here.

radd profile image
radd

lau99,

The discrepancies shown in your results raise a strong possibility of an interfering substance and if these were mine I would want the tests repeated in a different lab.

Assay interference happens resulting in skewed TSH, T4 and/or T3 results. The more known about reasons are biotin, macro-TSH, heterophilic antibodies, even thyroid antibodies, SlowDragon’s anti-mouse antibodies 🐁 and I have even read of rabbit immunoglobulins! 🐇

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