Confusing results!: At a recent pre op assessment... - Thyroid UK

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Confusing results!

Jaydee1507 profile image
Jaydee1507Administrator
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At a recent pre op assessment they checked my thyroid levels. I'm a long term Hashi survivor btw. Previously I was mid TSH range in December, not great but nothing like the TSH 18 that came back from this result! My GP was also confused, so retested a week later and TSH was then 9. The surgeon for my op won't operate unless my TSH is within normal range, GP has increased my dose from 137.5mcgs to 160mcgs but she is insistent that I was already on a 'good dose' and thinks possibly I was taking my levo with food which could possibly explain the weird result?

I may have been a little lax as to when I was taking the levo, so maybe different times of day but pretty sure I definitely was taking it every day. The only other thing I have done differently was to start taking Vit C.

Now I'm concerned that these were just very odd results and the increase in dose might send me hyper. I've checked my blood pressure which seems normal, thing is I find it hard to tell the difference between hypo & hyper symptoms as there is so much cross over with me. Help, why has this happened?

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Jaydee1507
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diogenes profile image
diogenesRemembering

Did this high TSH measurement come from the same source as your earlier normal ones? If not, it could be an instrument issue rather than a true result.

Jaydee1507 profile image
Jaydee1507Administrator in reply to diogenes

The TSH 18 result came from a hospital lab in London whereas the one following was still 9 at the local lab. So still way out.

diogenes profile image
diogenesRemembering in reply to Jaydee1507

On that level of T4, it looks like an absorption issue. Thus, take T4 a good time after eating.That could help. Also IBS and coeliac disease can hinder absorption.

Jaydee1507 profile image
Jaydee1507Administrator in reply to diogenes

I've now returned to keeping levo by my bed and taking it as I wake up. Just hope the dose increase on top doesn't make me shoot way over!

Thing is, it's like I can't get the dose quite right? Maybe this is also to do with taking away from food/coffee which I have also been careful of, or so I thought. Either I'm slightly hyper or mid range, can't get to a nice TSH just under 1...

Freddyy profile image
Freddyy in reply to Jaydee1507

I have similar issue, my FT4 is 18.6, tsh 14.6 !

I have no idea what is wrong !!

Did you take your dose before blood test ?

Can you post ur previous test, ? I need to see how high was ur FT4

Jaydee1507 profile image
Jaydee1507Administrator in reply to Freddyy

I never take my dose before test, am aware of that issue. ;)

My previous T4 was 18 with a TSH of 2.5. Years ago I used to need my T4 above range to get my TSH to a reasonable level. I know thyroid needs vary over time but unsure where my T4 should be to be honest given my history of needing it to be above range.

SilverAvocado profile image
SilverAvocado in reply to Freddyy

Freddyy, with a decent freeT4 (but you've probably got room to raise it at least once), and a very high TSH you may have very low freeT3. This is a pattern we see occasionally on the forum of very poor conversion, probably for a long time.

Unless the test was taken improperly, eg not waiting 6 weeks after a dose change. TSH tends to be quite slow moving, so if the freeT4 has only recently raised it might not catch up.

Angel_of_the_North profile image
Angel_of_the_North in reply to Jaydee1507

The TSH is not as important as your thyroid hormone levels. That free T4 of 16.1 was not even midrange (just under 47%) suggesting that you needed a dose increase. However the TSH seemed excessively high for that level of T4 - just shows that TSH doesn't necessarily reflect thyroid hormone levels accurately. Are you remembering not to take levo for 24 hours before a blood test and to have blood tests first thing in the morning, fasting - and to stop any vitamins or supplements containing biotin at least 4 days before test? Mot people seem to need TSH at the bottom of the range (or just under it) to feel well on levo. That doesn't mean you are hyper.

greygoose profile image
greygoose

Your FT4 level isn't bad, so one would expect the TSH to be much lower. If it were high due to an absorption issue, your FT4 would be lower. So, I dont think it's that.

It could be a conversion problem and your FT3 is low, but as they never test it, we can't know! So lacking in perspicacity on their part!

Or, do you take biotin in any form - either on its own, or in a B complex?

Or, you said that with the repeat TSH test, the TSH was 9, but done in a different lab - is that right? In which case, the 18.21 result could be to do with interference with the testing - TSH antibodies, or something.

Do you have other blood test results from previously, on the same dose? What you really need is the FT3 testing, because that could possibly explain what's going on.

Do worry about going 'hyper'. You can't. Your hypo and the thyroid doesn't jump around like that. You could be over-medicated, but that is doubtful as your isn't much over-mid-range - even though your doctor increased your dose by too much! Increase should be 25 mcg at a time. :)

Jaydee1507 profile image
Jaydee1507Administrator in reply to greygoose

I think the reason my GP increased me by 'too much' was that my surgeon won't operate until I am back in the normal range and judging by my TSH (cuz we can't see the FT3 of course, grr) I am way off base at the moment.

You've reassured me somewhat about absorption although none the less I have and am improving my method of administration and hopefully absorption by taking very first thing before I set foot out of bed with a totally empty stomach! So you think if it were that as an issue the FT4 would also be lower. Hmm OK.

Regardless of interference or antibodies etc affecting the TSH 18 level it was still 9 and well out of range and optimum a week later. I seem to store very little levo and I am definitely prone to large swings of TSH at the drop of a hat which in turn means I have never been well as a Hashi sufferer. :(

Regarding Biotin, I have been taking a Methyl Multinutrient supplement which is fairly new to me and includes Biotin. It's a pretty smallish dose though of 35ug a day and reading up on it's effect on TSH etc it would need to be alot larger dose to make a difference + my results would have gone the other way sending me hyper and not hypo... Perhaps you know more?

Oh yipee I found my last results. So, in December

TSH 2.53

FT4 16.7

So no change in FT4 but TSH out of range now. Without a T3 for reference what could that mean?

I've sent off for a medichecks but only the basic TSH, FT4, now wishing I'd paid £10 extra to get T3. At least then I'll know what my weird symptoms are...

greygoose profile image
greygoose in reply to Jaydee1507

So you think if it were that as an issue the FT4 would also be lower. Hmm OK.

Yes, because the TSH is only a reaction to your thyroid hormones in the blood. You're not absorbing the TSH itself. TSH is made by the pituitary. So, if it's high, it's either a mistake of some sort in the analysis process or your FT3 is too low.

Your doctor obviously doesn't know much about hormones, because increasing by a larger amount, doesn't get you to where you need to be faster. In fact, it could slow you down.

I seem to store very little levo and I am definitely prone to large swings of TSH at the drop of a hat which in turn means I have never been well as a Hashi sufferer.

I'm pretty certain you store as much as anyone else. But, that stored T4 has to be converted to T3 before your body can use it. And that's probably where the problem lies.

And levels do tend to fluctuate with Hashi's. But, perhaps you've always been under-medicated anyway

t's a pretty smallish dose though of 35ug a day and reading up on it's effect on TSH etc it would need to be alot larger dose to make a difference + my results would have gone the other way sending me hyper and not hypo

Not true. Even a little can have an effect. And it could send your results - any result - either up or down, not necessarily down. And, by the way, your TSH doesn't send you either hyper or hypo. It's just a messenger, so please don't shoot it.

TSH 2.53

FT4 16.7

That means you were under-medicated no matter what the FT3. And, the TSH was affected by some outside force.

Yes, pity you didn't get the FT3 with your Medichecks - I'm surprised they have a package without it. The other two on their own don't tell the whole story.

greygoose profile image
greygoose in reply to greygoose

Make sure you stop your supplement a week before the blood draw. :)

Jaydee1507 profile image
Jaydee1507Administrator in reply to greygoose

Yes. very good idea, will make a note. I had no idea.

Just wondering how a greater increse could slow me down?

Thanks so much for your replies by the way. I've found them very reassuring. :)

greygoose profile image
greygoose in reply to Jaydee1507

Because the body is stressed by too big an increase. With all hormone, you have to start low and increase slowly. With T4 that means increases of 25 mcg every six weeks. If you increase by more than that, an the body can't handle it, you have to go back and start again. That's basic thyroid 101.

SilverAvocado profile image
SilverAvocado

Jaydee1507, your freeT4 is pretty low for a person taking Levothyroxine. It's about halfway through the range, but most people will feel better with it at the top of the range or even slightly over.

When taking Levothyroxine, which only contains T4, the freeT4 needs to be quite high to give the body a chance to make enough T3. T3 is the active hormone.

Looking at these results I'd say the first step is to increase the Levo until the freeT4 is near the top. As GG mentioned this should be done slowly, in 25mcg increments. It may take a few increases to get you there.

Once the freeT4 is high, if that hasn't resolved things you need to look at freeT3, too. As I mentioned to Freddyy, it's possible to have an okay looking freeT4 and a very bad freeT3, and that can sometimes show up as a very raised TSH.

Anecdotally I've noticed on the forum that conversion can often get worse over time, particularly when we've been left undermedicated and quite ill like you have. It seems like at some point the body just can't cope with it anymore and really needs T3.

Freddyy profile image
Freddyy

I have done lot of research and came out with the following conclusion:

TSH increases in response to a lowered FT4.

TSH seems more sensible to FT4 than FT3, in fact I have seen cases where FT3 is above range while the TSH was still high.

However, it must be noted that treating with T3 is very powerful in lowering TSH, the reason is that T3 acts completely different than T4, T3 is capable to inhibit the release of TSH.

So in short, your TSH increased because your FT4 decreased, you must top up your T4 or check malabsorption issues

Angel_of_the_North profile image
Angel_of_the_North in reply to Freddyy

It's not that simple, unfortunately, as many people who are not healthy do not have a pituitary gland that has read the text book. For example, my TSH tends to track my free T4 instead of going in the opposite direction - ie it rises when my free T4 rises, even when there is no change to my free T3. Also it is possible for antibodies to interfere with the test - esp for TSH, and also vitamins like biotin as is it often used as part of the test. While most people have very low TSH with T3, some don't.

Freddyy profile image
Freddyy in reply to Angel_of_the_North

That doesn’t fall under primary hypothyroidism.

What you talking about is related to central/pituitary disorders.

Such disorders cause TSH to increase along FT4, since TSH isn’t a thyroid hormone, for example if the pituitary enlarged, there will be an excessive amount of TSH circulating in the body

The thyroid will be triggered by the TSH to produce more T4.

Angel_of_the_North profile image
Angel_of_the_North in reply to Freddyy

Yes, I know that, since that I have it. But we don't know if the OPs pituitary and hypothalamus function correctly or if she has a TSH-oma or if she has TSH antibodies that interfere with the assay - and it looks as though her free t4 hasn't fallen or, if it has, by very little - not enough to make that sort of rise in TSH usual.

Freddyy profile image
Freddyy in reply to Angel_of_the_North

Can you please post here the hormones level (FT4, ft3) as well as TSH ?

Does she have hashimoto or graves ?

TSH antibodies are seen only with Graves‘ disease.

Angel_of_the_North profile image
Angel_of_the_North in reply to Freddyy

Sorry, I should have said antibodies interfering with TSH assay - can apparently be anti‐mouse monoclonal antibodies or other heterophilic antibodies or rheumatoid factors - there have been a few studies. Results like that look more like an assay problem, poor absorption or interference from other drugs than anything else. You'd expect a lower TSH with a nearly mid-range free T4

Jaydee1507 profile image
Jaydee1507Administrator

I have Hashi's. The FT4 is in the pictura above. :)

Jaydee1507 profile image
Jaydee1507Administrator

Oh also, I suppose I should say I do have symptoms to match the TSH, so maybe not entirely eroneous?

Jaydee1507 profile image
Jaydee1507Administrator

So 6 weeks later on 160mcgs (from 137.5mcgs previously) results were:

TSH 0.26

FT4 22.4

So maybe it wasn't the Biotin but that's a huge reduction in TSH (from 18!) with just 22.5mcgs of Levo.

I still feel pretty hypo and weak. Maybe my EDS? Going to add in some Vit D I think.

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