Strange blood test results, advice please - Thyroid UK

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Strange blood test results, advice please

Wired123 profile image
59 Replies

Hello friends,

I have had some strange test results.

I was previously on

T4 150mcg 6 days a week and 100mcg once a week

T3 7.5mcg per day

This was changed at my last appointment to increase the T3 to 10mcg per day (taken morning and 2.30pm) and T4 kept the same.

Bizarrely my T3 has dropped since increasing the medicine!

It's the same lab and I am following exactly the same protocol/timing of taking the tablets and the test.

Any advice for my appointment as I really am not sure what to do as TSH has dropped but T3 has also dropped.

I am feeling really bad, tired, low concentration and a lot of fatigue so clearly not feeling right.

I've emailed the pharmacy to ask if there's anything wrong with this batch of SigmaPharm Liothyronin and will update once I have heard back.

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Wired123
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59 Replies
Lalatoot profile image
Lalatoot

Wired Why when ft3 was 96% through range did you increase t3?The body is designed to protect itself from having too high a level of ft3. It does this by reducing TSH and by converting more t4 into rt3 rather than into ft3. My suggestion would be that that is why TSH is lower. Ft3 is lower because conversion has been further compromised and your increase in liothyronine is not enough to make up for the conversion loss.

Wired123 profile image
Wired123 in reply to Lalatoot

interesting point Lala, it was increased as I wasn't well enough and previously I had been good on 10mcg T3 daily and T4 150mcg 6 days/100mcg 1 day a week.

At that point (March 2021):

TSH 0.05

T3 5.9

T4 17.5

I only lowered T3 back then as I suffered a close family bereavement and had intense emotions/mood swings.

After a couple of months I slowly came back up to 7.5mcg and the Endo felt there was scope to come up a bit more as his other clinic has a reference range for T3 which goes as high as 6.8 hence he felt scope to increase the dose.

However the strange thing is my results are very different to those posted within this message despite the dose being the same. T3 and T4 are much lower now than they were in March 2021 despite the same dose and no other changes to my diet or lifestyle and my weight is stable.

It is very puzzling and I cannot make any sense of it.

SlowDragon profile image
SlowDragonAdministrator in reply to Wired123

I notice your thyroid antibodies have increased…..could be a hashimoto’s flare

Wired123 profile image
Wired123 in reply to SlowDragon

Yes that's a good point, are they high enough to be of interest? In the past Endos have just fobbed me off and claimed that antibodies are irrelevant once you've been diagnosed but clearly a spike in antibodies is going to cause a storm on the insides of our bodies.

SlowDragon profile image
SlowDragonAdministrator in reply to Wired123

Are you on strictly gluten free diet

When were vitamin levels last tested

Wired123 profile image
Wired123 in reply to SlowDragon

not gluten free, but I have been tested for celiac and am negative. I don't eat much bread/wheat in any case.

greygoose profile image
greygoose in reply to Wired123

No, a spike in antibodies dos not cause a storm in your body. Your antibodies have spiked BECAUSE there is a storm in your body. If you're having a Hashi's 'hyper' swing, antibodies will rise because the appear to clean up the mess left after the attack on the thyroid. They do not do the attacking.

Wired123 profile image
Wired123 in reply to greygoose

OK, so how do we know this is going on or not? What are the solutions?

Also what is the medical term for this "storm" so I can do some research on it?

greygoose profile image
greygoose in reply to Wired123

As far as I know, there are no solutions. And you would know it is going on either by blood test results, or a change in symptoms.

Wired123 profile image
Wired123 in reply to greygoose

Ok, so do we know the name of the storm and it’s cause?

greygoose profile image
greygoose in reply to Wired123

It's an immune system attack on the thyroid. As far as I know, it doesn't have any specific name. And, the cause is having Hashi's. But what caused you to have Hashi's is anybody's guess. There are many possible causes.

But, as far as I know, it hasn't been established that you do have Hashi's, has it? SlowDragon just said it could be Hashi's because your antibodies have increased. But, have you ever had over-range antibodies? Unless you have, it's just specualtion at this point.

Wired123 profile image
Wired123 in reply to greygoose

I should have put this in my initial post, I was diagnosed with Hashi’s in 2008 when my antibodies were really high.

I’ve been on T4 mono since, added in T3 in 2020 and it was a game changer.

I was happy and everything was working well until March.

Then had 2 family bereavements so reduced T3 down.

Now I’m back to my March dose but it’s just not working.

Interestingly my T4 dose has not changed in the last 8 months yet my blood levels have plummeted despite no change in dose which is again a mystery. You will note they were 17.5 before so that’s quite a drop despite no change in dose.

greygoose profile image
greygoose in reply to Wired123

Then I would say that your Hashi's has a lot to do with your changes in levels. But I don't understand why you reduced your T3 in March. I wouldn't have thought that bereavement was a reason to do that. And if we change a dose that was working, it's often difficult to get back to where we were before. We often see that in people whose doctors insist on messing around with their doses.

On the other hand, bereavement could have upset your immune system. We just don't know.

Wired123 profile image
Wired123 in reply to greygoose

The change in dose at that time was felt to be the right thing to do, but I don’t want to discuss that as it was a tough time.

In any case if we focus on the fact that I’m back to the old dose and it’s not working, T3 is lower than it was 8 weeks ago despite 2.5mcg increase in dose that’s strange.

I did ask Endo to do Reverse T3 but he didn’t as that would give us additional data on what’s happening to the expensive Lio I’m downing!

T4 had also trended lower despite no change in dose.

Could this be resistance to thyroid hormone?

greygoose profile image
greygoose in reply to Wired123

Testing rT3 would give you no additional data. It tells you nothing that you can't see in the other results. There are many, many causes of high rT3 and only one of them has anything to do with thyroid. And, neither your FT4 nor your FT3 is high enough to cause high rT3.

No, it couldn't be resistance to thyroid hormone. That is when the hormone doesn't get into the cells. So, your levels in the blood would be high but you'd still be hypo. Your problem is more likely to be an absorption problem in the gut. Do you know if you have low stomach acid?

Lizzo30 profile image
Lizzo30 in reply to greygoose

I read somewhere the other day that to test your stomach acid you can take half a teaspoon of bicarbonate of soda in water and if you burp after it means you dont have low stomach acid , just thought I would mention this

greygoose profile image
greygoose in reply to Lizzo30

Yes, that's exactly right. :)

Lizzo30 profile image
Lizzo30 in reply to greygoose

Praise indeed from Greygoose my work is done

greygoose profile image
greygoose in reply to Lizzo30

lol

Wired123 profile image
Wired123 in reply to greygoose

Ok I thought rT3 would tell me if my T3 is being shunted out of the body.

Agree it’s potentially an absorption issue, what’s causing it is the mystery.

Not had stomach acid tested but that’s a good point. Would the Endo do that?

I’ve had some strange tummy issues over the last few weeks, lots of wind and IBS type symptoms, and also what I suspect is kidney pain (lower back on the right hand side) for several weeks.

greygoose profile image
greygoose in reply to Wired123

No, testing rT3 would not tell you that. And, I don't know how T3 would get 'shunted out of the body', anyway. Not something I've ever heard of.

T3 has a half-life in the blood of 24 hours. Which means that if you took 10 mcg this morning, tomorrow morning there would be 5 mcg left, minus whatever got into the cells. So, you could do a urine FT3 test to get a rough idea of how much is getting into the cells. But, doctors, on the whole, are worse at interpreting urine tests than blood tests, and would probably refuse out-right to do one.

But, as I said, rather looks more like your T3 is not even getting into the body - not much of it, anyway - due to an absorption problem in the gut. In which case, most of it would just pass straight through. But, the only way you can tell about that is getting your FT3 tested - as you have. An rT3 test wouldn't tell you anything more about that.

T4 converts to rT3 and T3. T3 cannot change into rT3.

I doubt if your endo has a clue about low stomach acid. The majority of doctors don't even know that it's possible to have low stomach acid, and always treat digestion problems as if they're caused by high acid. So, you're sort of on your own with that one. Have a look at this article, and try the home test at the end:

healthygut.com/3-tests-for-...

The symptoms of low stomach acid are much the same as for high stomach acid. The difference is that the reflux is caused by undigested food fermenting in the stomach and causing volcano-like eruptions and possibly nausea.

Lower back pain can be a hypo symptom.

Wired123 profile image
Wired123 in reply to greygoose

Thanks for the additional info.

The lower back pain I used to get before I started T3, but it was just a dull ache that came on occasionally. Now I’ve had more noticeable pain that’s been ongoing for weeks, I suspect kidney stone but will get it checked out.

I understand that you’re saying the T3 isn’t getting into cells, would another school of thought be that it is being sucked into cells hence leaving lower levels in the blood?

tattybogle seems to think I’m taking too much hormone instead so I’m struggling with the two opposing views. You both make good arguments either way, so I’m at a loss as to which direction to go in on this.

greygoose profile image
greygoose in reply to Wired123

I understand that you’re saying the T3 isn’t getting into cells, would another school of thought be that it is being sucked into cells hence leaving lower levels in the blood?

No, I didn't say it wasn't getting into the cells. You asked if you had thyroid hormone resistance. I said I didn't think so.

What I think is that your Hashi's is responsible for the rise in your level, followed by the sudden drop. Levels do fluctuate when you have Hashi's. And the rise in the antibody levels from the last time they were tested could indicate a bit of a Hashi's swing.

tattybogle profile image
tattybogle in reply to greygoose

"What I think is that your Hashi's is responsible for the rise in your level, followed by the sudden drop."

Hi greygoose ... i can't see any rise in level ?have i missed it ? Do i need more coffee ?

greygoose profile image
greygoose in reply to tattybogle

I was referring to the rise to 5.57 in August, almost top of the range - at least I assume that was a rise - then the drop to 4.7 in October. I also assume that that is the whole point of this thread: the drop from 5.57 to 4.7 whilst still on the same dose. But, I have to confess, I am getting awful confused! lol

tattybogle profile image
tattybogle in reply to greygoose

2nd reply in thread:

it was previously 5.9 (assuming same range)( fT4 17) in march when last on 10mcg and was feeling well on that. Then T3 dose then lowered( bereavement)

Then 5.57 [2.63 -5.70] when back on 7.5mcg (fT4 13.9)

now 4.7 on 10mcg (fT4 14.2)

have had more coffee anyway :)

greygoose profile image
greygoose in reply to tattybogle

Unfortunately, coffee does nothing for me.

OK, so in March it was 5.9 on 10 mcg T3.

In August it was 5.57 on only 7.5 mcg T3. So, that is a rise of a sort - i.e. takes less T3 to get to the same level as March.

Now, it's dropped to 4.7 on 10 mcg T3. So, that's a sharp drop. And, it just seems to me the upping and downing has more to do with Hashi's than with dose.

Wired123 profile image
Wired123 in reply to greygoose

If we look at it in pure and simple terms (like a doctor would!), T3 has dropped despite a 2.5mcg dose increase 8 weeks ago.

Cortisol is a bit lower.

But TSH has gone down in the same period.

I’m still feeling unwell with many hypo symptoms.

I’m not feeling as good as I did when I was on the same dose previously (pre-bereavement).

I would like to think I’m over the bereavements and it should not affecting me much. I note and respect others’ comments that it does take time to get over grief.

greygoose profile image
greygoose in reply to Wired123

But TSH has gone down in the same period.

Are all tests done at the same time of day? If not, you cannot compare the TSH results. Even T3 varies slightly throughout the day. Not as much as the TSH, but a little. Which is why we always advise having the blood draw before 9 am, when the TSH will be higher.

I’m not feeling as good as I did when I was on the same dose previously (pre-bereavement).

As I said before, this often happens. Returning to a dose you previously felt good on, does not always make you feel as good a second time. Which is why I always counsel caution when people want to reduce their dose, thinking it too high.

I don't think you should under-estimate the power of grief. I don't think we're ever completely over it - I certainly am not, anyway.

Wired123 profile image
Wired123 in reply to greygoose

Yes always at the same time.

Meds also at the same time.

I also go to same lab each time.

This is to eliminate all doubt and doctors fobbing me off with silly excuses when they can’t be bothered to delve deeper.

I’m not dismissing anyone’s views on grief and totally respect how long it takes to recover but I think I am ok and over the worst as it’s been a long time, so I’m discounting that as the cause.

The question then on your statement:

As I said before, this often happens. Returning to a dose you previously felt good on, does not always make you feel as good a second time. Which is why I always counsel caution when people want to reduce their dose, thinking it too high.

What do I do to get back to feeling good?

greygoose profile image
greygoose in reply to Wired123

I wish I had the answer to that question, but I don't. It has never happened to me personally. But, I think I'm a bit of an odd ball, anyway. All you can do is give it time and increase slowly as you find necessary. Perhaps a 2.5 mcg T3 increase around now would be a good idea. It's all trial and error, anyway.

Wired123 profile image
Wired123 in reply to greygoose

I’ll see what Lalatoot and tattybogle think then and go armed with all that knowledge to my appointment tomorrow!

Will report back on what the Endo thinks

tattybogle profile image
tattybogle in reply to Wired123

I think greygoose is older and wiser than me... and she takes T3 , which i don't :)

I wasn't meaning i think you're definitely taking too much .. was more questioning the Endo's explanation re. ranges.

also ,my first comment was made before i realised you had previously felt well with slightly over range fT3 (assuming range for the 5.9 was the same) .

As to how to get back to feeling good , It sucks .. but you have to start over and find what works Now , by patient experimentation ....

'Life is all change ' whether we like it or not , 'backwards' isn't an option. so that leaves dose up/ dose down / or wait and see ...

When in doubt i usually go for 'wait and see'

I think the HPT feedback system doesn't like being fiddled with.. and after it's been fiddled with it is very often the case that we can't get the settings back to where they were before we (or a Gp) fiddled with it.

I think when something forces it to change .. life events , or a dose change, or both.. the more months we leave everything to settle down afterwards the more chance it will come back to where it was .. the more we mess with it by changing doses in close succession the less chance we'll ever get back to feeling well.

Not a helpful answer i know , sorry , i've had a glass of wine.

jacobite33 profile image
jacobite33 in reply to Wired123

Hey wired hope this might be of interest if you don’t already know.I have had a lot of stomach issues lately.There is a connection to low mood fatigue and a host of other symptoms.I am starting to think that it’s part of my problem too and will do the tests in a few weeks

healthpath.com/about/

Lalatoot profile image
Lalatoot in reply to Wired123

Thyroid hormones are a mystery !

jgelliss profile image
jgelliss in reply to Lalatoot

Lalatoot I'm learning a lot from your response to Wired123. It interests me very much . Would you suggest that Wired123 should hold on to the 7.5 mcg T3 with 143 mcg T4? I'm very interested to since I'm on very similar dose myself . For the first time in along time my muscle/joint pain is gone. My energy has improved . It's been a game changer for me.I had TT several years ago. My thyroids now comes from a bottle.

What I do find in the coarse of my thyroid journey after my TT. My need for higher FT4 and Mid or a bit lower FT3 is more my Optimal. We all have our own set points that makes us feel our Best.

Thank You In Advance For Your In Put.

Wired123 profile image
Wired123 in reply to jgelliss

If you’ve got to the point where you have energy and your muscle pain has gone, I think you’re at your sweet spot.

I was there and then things changed so I need to get back there however my old dose is no longer working so I need to find out why.

Vasiliki99 profile image
Vasiliki99 in reply to Lalatoot

your T4 is lower - i had results like that in the past when on T3 - they have done a lot of tests which is more than usual - cannot get T3 now i would mind it though not sure ..............

tattybogle profile image
tattybogle

"the Endo felt there was scope to come up a bit more as his other clinic has a reference range for T3 which goes as high as 6.8 hence he felt scope to increase the dose."

i'm a bit dubious about that explanation .. if the other clinic has a different lab range , it's not because they have just decided to allow their patients to have a higher fT3 number... it's because they use a different lab for testing... on a different test platform .. calibrated and set differently .

So in theory if he'd run your 5.57(96%) fT3 result through the other lab , it should have still coma out as about 96% on that range too.

So the same blood sample would have come back with a result of about 6.65 [3.1 - 6.8] if that was the platform /range used.

So i think i agree with lalatoot, that it was perhaps not the right thing to increase T3 dose... and judging by the response (lowering TSH and lowering fT3).. i think your body agreed... for whatever reason , i think it didn't want anymore T3 at that point .. and used its complex balancing mechanism got rid of it.

Don't underestimate the amount of time it takes us to find our balance again (in all sorts of areas) after a bad bereavement... honestly i think it took me about 2 yrs to recover and find a new balance and new 'me' .. we are changed by bereavement in all sort of ways , and stability is one of the best helps in finding a new balance for ourselves... it's tempting to try and just get the numbers back to where they were before and expect we should be the same as before , but in truth i think we are forever changed by shock and the long process of grief, and we have to develop a new balance in ourselves as we heal.

wellness1 profile image
wellness1 in reply to tattybogle

Wired123 has many factors to consider, but wise words on the effects of grief, which can be profound and lasting.

Wired123 profile image
Wired123 in reply to tattybogle

From speaking to the Endo he was alluding to the fact that whichever clinic I got the test done at my blood level will be the same.

So in the other clinic, he would have scope to go up to the top of the ref range.

This is of course different to the views of those on this forum that the absolute number does not matter as much as the % in range.

tattybogle profile image
tattybogle in reply to Wired123

I'd love to be able to check this out myself , cos i've never been totally convinced about the truth of what happens in practice versus theory. if i had the dosh i'd send the same sample to loads of labs who use different platforms/ ranges .. and then i'd know what's what.

Wired123 profile image
Wired123 in reply to tattybogle

I might try doing this sometime

Wired123 profile image
Wired123 in reply to Wired123

Although I’m sure the doctor knows as he works across 2 hospitals/clinics… at least you’d hope he knows something basic like that!

tattybogle profile image
tattybogle in reply to Wired123

if he's really saying that a result of eg :

14 [12-22] is the same blood level of fT4 as

14 [7.9-14] ....

Then there is a massive problem with the entire country's lab regulation methods.

The first '14' is interpreted by most /all GP's/Endo's as 'pretty low' level =fine/ carry on or even increase dose.

and the 2nd 14 as 'pretty high'= do not allow raise /consider reduction.

greygoose profile image
greygoose in reply to Wired123

I'm sorry to disallusion you, but doctors do not know. They are really very, very bad at interpreting blood test results. They just don't know how ranges work. Which is one of the reasons so many people have problems. It's not something basic, as far as they're concerned. I don't think they had much instruction on it in med school. What's more, they have a distinct tendance to interpret them to suit their ends - whatever they may be. Which is why we always say to get print-outs of your results so that you know exactly what was tested and what the results and ranges were, giving the doctor less scope to fob you off.

Wired123 profile image
Wired123 in reply to tattybogle

Also the dose increase was to get me back to where I was good before and also I was not quite right on 7.5mcg, so it was felt that it was the right decision at that time.

I can only really comment on your cortisol results, both your results are very low for that time of day. Cortisol should be at it's highest point first thing in the morning & yours is half at what it should be, this could account for your other results. You need to be referred to an Endocrinologist who is conversant with pituitary/adrenal issues to have further tests, sadly not all of them are. if you can say where you live I can point you to an Endo by message. Have a look at Addison's Disease which can be an autoimmune condition & Adrenal Insufficiency from another cause. This chart shows what normal cortisol levels should be through the day.

cortisol levels
Wired123 profile image
Wired123 in reply to

Agree on low cortisol and historically mine has always been low in the morning. When I added T3 it went up a bit, not a lot, but I could get out of bed quite easily and wake earlier than before.

Question then is whether more T3 will improve cortisol?

Before starting T3 I had the ACTH test which shows my body can make the required level of cortisol but I do agree my body doesn’t make enough Cortisol unless it’s pushed hard. Hence I’m one of those people who deal well with pressure as my system does not get fired up without it!

in reply to Wired123

When you had the short synacthen test did they take blood to measure your ACTH before they gave you the artificial ACTH? It needs to go onto ice straight away, it shows whether the issue is with your pituitary gland rather than your adrenal glands.

Wired123 profile image
Wired123 in reply to

I had it done privately so I hope they did it right.

One thing I will say is I have a small pituitary gland (aka empty sella) which different experts disagree on. Some say I have enough tissue others say I probably don’t have enough.

I’ve seen the Queen’s Endo in London who is an expert in pituitary (you can look him up, his surname sounds like something you use to rake leaves up with).

in reply to Wired123

LOL!! I know who that is! He should know what he's talking about!

😀

Wired123 profile image
Wired123 in reply to

He’s really good and a nice guy, he wrote the most detailed clinical letter I’ve ever seen but didn’t exactly have much practical help.

He’s more of an academic person who likes to talk in theoretical terms.

He did suggest trying some cortisol supplements and testosterone injections… when I looked at his build I also thought perhaps he’s also taking some bodybuilding supplements himself as he’s pretty jacked!

Janleek profile image
Janleek

Have you had any treatment that you're not used to lately?

Wired123 profile image
Wired123 in reply to Janleek

No nothing has changed, except for increase in T3

Janleek profile image
Janleek

I only ask as I have heard of a few people now (including a relative) who has been badly affected by a certain procedure..................

Wired123 profile image
Wired123 in reply to Janleek

What procedure is that?

Wired123 profile image
Wired123

For those that are interested, I saw the Endo this weekend. He’s suggested keeping all as is for now, going for the wait and see approach.

He can’t explain why the blood levels of T3 have dropped.

Retest in 4 weeks so I will update you all then.

Thanks for everyone’s advice.

Wired123 profile image
Wired123 in reply to Wired123

Also he stated the TSH change isn’t significant and around the same as previously hence he’s treating TSH as no change to last time

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