High out of range ft4 & ft3 (high) on NDT but h... - Thyroid UK

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High out of range ft4 & ft3 (high) on NDT but huge TSH too..?

EightiesChic profile image
46 Replies

TSH 4.62^ (0.27-4.2)

Free thyroxine 23.7^ (12.00-22.00)

Free T3 8.7^ (3.1-6.8)

I'm obviously going to half my NDT immediately. I'm really devastated as Levrothyroxine was making me feel really, really ill. I've had hashimotos for over 10 years. I'm on 1/2grain of NDT where as I was on 100mcg Levrothyroxine. I feel much better on NDT (much) but have noticed feeling tired recently. I don't have any hyper symptoms at all. I usually get a much more comprehensive test than this but I just paid for a quick check.

Is there a reason my TSH would be this high with my ft4 and ft3 so high?

I'm so disheartened by this.

:(

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EightiesChic profile image
EightiesChic
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46 Replies
jimh111 profile image
jimh111

When do you take the NDT and when was the blood taken? This can have a big effect on the accuracy of the blood test. It's important not to take the blood too soon or too late. Also it will take a little while for the TSH to respond to a change in medication. It would also help if you have any blood test results from when you were first diagnosed.

EightiesChic profile image
EightiesChic in reply to jimh111

I took my last dose of NDT 48h prior to a morning finger prick test. I usually get a comprehensive test including rt3 and some vitamins and minerals but I've been feeling better, other than a recent struggle in the morning (it's drastic, it always coincides with some thyroid issue. That's why I did a mini test before my next big test is due)

My TSH has been slowly rising since a change to NDT, just after the beguiling of the year.

I don't have my initial diagnosing results (I think I was diagnosed in 2000) but I could dig out the last 3m

Thank you,

Anne

startagaingirl profile image
startagaingirl in reply to EightiesChic

Hi - I have no idea why your TSH would be high, but I can give you my experience of going over-medicated. I mistook my symptoms of fatigue and muscle & joint aches/pains as being under when actually I was over. The main difference for me was that I was struggling to get to sleep when over but sleeping too much when under. Until I had a test I brushed that off, however, as to me the overall picture said hypo, in fact I was about to increase my dose again. A lot of symptoms can be common to both - over and under.

On a different point, you say your test was 48hrs after last dose. In that case your test will be slowing a falsely low FT3, as 12 hrs is the recommended gap after t3 dose. I am on T3+T4 so not sure what the gap is for NDT but it surely isn't anything like as long as 48hrs, so your FT3 is actually higher than your test result.

There is a phenomenon known as thyroid hormone resistance where your cells simply don't use T3 effectively, no matter how much FT3 you have in your blood. But I know nothing more about it.

Gillian xx

EightiesChic profile image
EightiesChic in reply to startagaingirl

Thank you, Gillian.

I thought it was 24h but I missed my dose on Saturday due to illness, I deliberately missed Sunday to test and post on Monday. Usually I'd leave 24h. What you're saying makes complete sense though which is even more weird, that I have no hyper symptoms yet t3 may be even higher than this.

It's very odd for me - I feel very hypo. Sleeping lots and all the other usual symptoms.

Sometimes I really do wonder if the results are even accurate! I know that sounds silly.

I've read a little about thyroid hormone resistance, today. I've never had this problem before, I hope something like that couldn't just come on.

Thank you for telling me how you feel, that's really helpful. I've never felt what hyper feels like although my bloods clearly are wrong.

Anne x

cwill profile image
cwill

So if you hadn't seen the bloods you would have gently upped your dose? Because you have no sings of overstimulation but those off hypo? Not really sure what happened there.

EightiesChic profile image
EightiesChic in reply to cwill

I would have assumed I need an increase in medication, yes indeed. But I'd never change my dose without checking. I feel completely hypo - it's very odd. Would you expect to gently up your dose with these results?

EightiesChic profile image
EightiesChic in reply to EightiesChic

With the high t4 and t3 my assumption would be to decrease - despite the high TSH.

Anne

JS33 profile image
JS33 in reply to EightiesChic

I would stay on the dose I was on and check my temperature regularly for a week or two. If it ain't ever hitting 37 i am still hypo baby, regardless of what the bloods are telling me.

Now , if I were to have a blood test that showed excessively high , say over 8.5 but I 'was' getting an afternoon and evening temp of 37 , then i would drop a little bit at a time , still keeping an eye on the temp.

cwill profile image
cwill

So you are on half a grain of NDT and an decrease means that you will be on a Quarter Grain? Or you mean to stop it altogether? I was badly off on 100 levo and started with one grain of NDT, but a dose of a half doesn't actually give you anywhere to go in a dose decrease. Sorry that I don't have an answer.

EightiesChic profile image
EightiesChic in reply to cwill

I phased in the NDT while taking Levrothyroxine so that I was always on at least an equilibant dose. But with each blood test I've seen that I've need to decrease my medication. But my... goodness.. I don't know what's going on, my levels appear to keep rising.

Thank you,

Anne

EightiesChic profile image
EightiesChic in reply to EightiesChic

equivalent

cwill profile image
cwill

So you were on 100 levo and added 1/2 NDT? And the results are now over as above. So are you going to reduce or stop the levo and increase the NDT to do a true NDT trial? If you were a non responder or port converter on levo I would suggest that you give NDT a proper trial.

EightiesChic profile image
EightiesChic in reply to cwill

I was on .100 levo and I decreased the levo to .75 and added 1/4gr, then I went to .50 lev and 1/2gr, at this dose my levels seemed high so I decreased the levo to .25 and kept the 1/2gr, then I completely swapped the .25 lev for another 1/4gr - so the total I was taking was only 3/4gr, after testing again it showed me to be over medicated slightly, so I've reduced down to 1/2gr, I think I've been in this dose for 2 months now, my ft4 and ft3 are slightly higher and my TSH is way higher.

I'm sorry, I know this doesn't make sense.

Thank you for taking a look today.

Anne

shaws profile image
shawsAdministrator

1/2 grain of NDT is the equivalent to around 50mcg of levo which I think is low. Also I personally don't think blood tests which were invented for levothyroxine alone can be used for NDT as it contains T4, T3, T2 etc.

Also did you get a blood test after your took NDT? Was test at the very earliest and allowed a gap of 24 hours between the last dose of NDT and the test.

EightiesChic profile image
EightiesChic in reply to shaws

Thank you, Shaw.

I left 48h since my last NDT dose (accidentally, usually I'd leave 24).

I've described In a reply above, how I have been needing to decrease for months due to ever rising levels.

I don't understand how TSH could be high with these high t4/t3. I do take my medication every morning between 6-7am and leave at least an hour but usually more before food etc.

Thank you for your help,

Anne x

shaws profile image
shawsAdministrator

This may be helpful:

web.archive.org/web/2010103...

web.archive.org/web/2010112...

EightiesChic profile image
EightiesChic in reply to shaws

Thank you!

Clutter profile image
Clutter

EightiesChic,

If you take biotin as a supplement or in a B Complex vitamin this can skew thyroid results. healthunlocked.com/thyroidu......

EightiesChic profile image
EightiesChic in reply to Clutter

I don't. Thank you for the article, I'll read it now.

Anne

humanbean profile image
humanbean in reply to EightiesChic

Do you take supplements intended to improve the health of hair and nails? They usually contain biotin as one of their ingredients.

EightiesChic profile image
EightiesChic in reply to humanbean

No, not at all. I'm going try and speak with a doctor because if these tests are right I'm a bit worried.

EightiesChic profile image
EightiesChic in reply to humanbean

Thank you though x

EightiesChic profile image
EightiesChic

If I squeezed ger it could double my TSH and ft3 and ft4?

This is the first time I've even done a finger prick test but I won't be doing it again.

I took the test over 3 fingers because hardly any blood would come out of my left hand, my right hand wouldn't stop bleeding.

I'm starting to worry that there is something wrong with me :(

Anne

amasufindme profile image
amasufindme in reply to EightiesChic

Hi Anne,

Finger prick testing is horrid and I struggle with it - placing hand in hotter water (~55/60oC) for a time and pricking nearer the nail bed helps and then you have to watch it drip :-( its 'orrible!

The other point you may already have covered is that biotin will interfere with some thyroid function assays, so if you are supplementing with biotin then this needs to be stopped for a few days before sample taken. Also peanuts and other nuts are rich in biotin...

Ask if biotin is used in their assays - is it Medi-check or Blue Horizon?

Best wishes to you :-)

EightiesChic profile image
EightiesChic in reply to amasufindme

It was medichecks. I don't take any other drugs than my thyroidmedication at the moment. Even thoughI know I should supplement with bit d(3) I stopped taking it a few months ago since I learnt about bit k(2?) ... I realise I do not know enough to just pop the pills without strong guidance.

I'm really trying my best.

Due to the AI nature of my condition I try to not eat many nuts at all. I'll sometimes have an eat naturalbar, but I'm not consuming lots of peanuts.

Thank you so much for your advice.

This is the first and last finger prick test I'm doing,

Thank you so much.

Anne

amasufindme profile image
amasufindme in reply to EightiesChic

As our thyroid meds will be draining our calcium, best to keep on top of a good Vitamin D supplementation - Calcium, Magnesium, Vit D and Vit K2 all dance partners!

A good book :-)

Vitamin K2 and the Calcium Paradox by Kate Rheaume - Blueue

As I am moving into the menopause and want to avoid osteoporosis, I take Vitamin D3 IU 5,000 with Vit K2 MK7 180mcg with Magnesium Citrate 400mcg and Calcium citrate 800 mcg. I am trying to get my Vitamin D up to 150nmol/L

Enjoy the sun :-)

cwill profile image
cwill

Please complete your profile as we could have given you info slightly more easily having read all the pertinent details first.

EightiesChic profile image
EightiesChic in reply to cwill

I can't add anymore to what you've asked me already, than what I already have?

This is my very first time using this site, so thank you so much for your kind advice.

Thanks,

Anne

greygoose profile image
greygoose

Do you have Hashi's?

EightiesChic profile image
EightiesChic in reply to greygoose

Yes

greygoose profile image
greygoose in reply to EightiesChic

That could have something to do with it. Not saying it does, but it could. You may have had a Hashi's, attack, and excess hormone was dumped into your blood, but your TSH hasn't caught up with it, yet.

EightiesChic profile image
EightiesChic in reply to greygoose

I did have a really bad attack 3 months ago but antibodies were dropping since then. I would assume antibodies would have dipper further as I've not seen a dramatic change in my health / apart from tiredness. Or I could be at the beguinning of another stack.

Thank you so much for helping me.

EightiesChic profile image
EightiesChic

Thanks you so much for your advice. I used to track my bbt as I struggled with very low bbt (34-35) which was causing lots of other problems with other parts of my body. I was only even hypo when this happened though. No results like this.

I've dug out my bbt thermometer and will take my temp in the morning.

Honestly, not one single tremor. Nothing would freak me out more than being overmedicated - I'm not blindly trying to push myself to the max... I really, really do feel hypo. M heart beat is regular as usual, my blood pressure is on the low end of normal. Needing lots of sleep. (Piling on the weight.. I don't like to go on about this as weight is not a main focus, more health.)

I've emailed the company about the bloods to enquire if they could be wrong.

Thank you for your time and wisdom.

Anne x

JS33 profile image
JS33 in reply to EightiesChic

Late afternoon and evening temp is also important. A temp of 37 at this time shows your metabolism is working and is repairing the body from the days exertions. Hence when you ain't getting that sort of temp at those times , your body ain't repairing and you have hypo symptoms of fatigue and muscle aches etc. good luck.

EightiesChic profile image
EightiesChic in reply to JS33

I don't know if my temperature has ever been 37 - not even when I was pregnant.

This condition has not been managed well for quite some time and I'm starting to realise now that my mess may have been decreased in the past, in haste, and this has caused this constant 'up and down' of my results.

Thank you so much! thank you, thank you. I've just realised that my calculation this morning was wrong for my bbt and that it was actually 35.65! Which now makes sense. Finally something makes sense. Right now after coming home from work my temp is 36.1.

Despite my high levels, I'm actually hypo, which I feel.

I'm going to monitor my temperatureand I will not decrease my dose.

Thank you for your help.

Anne

EightiesChic profile image
EightiesChic

Must be! Thank you. My TSH is so high... it doesn't make any sense to have ft3&4 that high too.

I'll take my bbt in the morning and update x

EightiesChic profile image
EightiesChic in reply to EightiesChic

96.18 = 36.21

My daughter woke me up so this is probably a little higher than it should be / I forgot to take it in complete rest.

My t3/t4 can't be that high?

EightiesChic profile image
EightiesChic in reply to EightiesChic

96.18=35.65 😐

jimh111 profile image
jimh111

Assuming your previous results were not like this (highish TSH, fT3 and fT4) I suspect this blood test was inaccurate. If you live in London you can get reasonably cheap (not cheap at all but compared to other tests) at bloodtestslondon. I don't like finger prick tests as there's a chance of error. You should leave about 10 to 12 hours if you take NDT once daily, so your results are wierd in every respect.

EightiesChic profile image
EightiesChic in reply to jimh111

Morning Jim,

My previous results have shown slightly elevated t3&t4 and I have been reducing my medication accordingly - testing every 6/8w. My last tsh was 2 with slightly elevated t3&4 but even though I've decreased my overall medication by 1/3rd - my tt3/4 AND tsh have apparently gone up.

I do live in London - thank you for the information. I have been using an online service and have usually had the bloods taken in a local BMI hospital. This is the first time I've done a finger prick test.

Thank you for reading through my information.

Anne

jimh111 profile image
jimh111 in reply to EightiesChic

Seems like the test didn't work. Sorry.

JS33 profile image
JS33

I totally agree blood test can be a distraction. The established TSH is widely regarded by thyroid patients as inaccurate because of them using what were likely hypo suffers in establishing a baseline for the population, yet we accept the given T4 and T3 levels as gospel.

I have also seen in literature , when treated with T4 only , it is common to find it necessary to increase t4 to over range inorder to get T3 in range - something the medical community accepts as 'just one of those things'

I wouldn't say to anybody dismiss blood results out of hand , but for anyone who has dosed NDT by the up and down chasing of blood results and never felt well , it can be worth getting a blood pressure monitor and a thermometer and increase until all the following signs are there :Temp of 37 in the late afternoon and remaining until late evening. Pulse up in the 60s 70s or even the 80s , and decent but not high blood pressure. If you eat sensible , you should also lose weight about half a pound a day maximum.

I i raised to the point were this occurred on NDT, and have a blood test that shows high , but I laugh it off .

EightiesChic profile image
EightiesChic in reply to JS33

Thank you so much! thank you, thank you. I've just realised that my calculation this morning was wrong for my bbt and that it was actually 35.65! Which now makes sense. Finally something makes sense. Right now after coming home from work my temp is 36.1.

Despite my high levels, I'm actually hypo, which I feel.

I'm going to monitor my temperatureand I will not decrease my dose.

Thank you for your help.

Anne

EightiesChic profile image
EightiesChic in reply to JS33

Je33,

Thank you so much for your advice.

I have brought a thermometer and BP machine. My bbt has been just over 35 degrees c for a few days and this morning my BP is:

Sys: 106

Dia: 56

Pulse: 65

Which is very usual for me to be this low (for many many years).

I've increased my NDT by 1/4th gr so that I am now on 3/4gr. But I'm experiencing headache in a pressure kind of way, eye ache, tingly tongue.

I associate these symptoms with change in medication (rather than being ill)

Do you think this will settle down? As it's exactly these feelings that I hate!

Thank you,

Anne

JS33 profile image
JS33 in reply to EightiesChic

I found on the way up , there were strange things that made you doubt what you were doing , especially when trying to relate them to blood tests. My personal opinion is that the body is making best use of whats coming in , so you may get a touch of constipation after a dose increase but some dry skin clears up and you stop waking during the night etc. The body deciding what is best to do with whats there.

My personal eureka moment , increasing one week and noticing my temp in the afternoon finally going above 36.5 , it went to 36.7 on that raise. Next raise just touching 37. Another raise , getting up to 37 in the middle of the afternoon and staying around there until bed time.

During this later stage, I could see and feel things starting to iron themselves out .

Everybody is different so go easy and watch and listen to your body.

In my opinion , if you pulse and BP are not telling you you're way over medicated , then look at the afternoon and evening temp. To me , not reaching 37 is very suspicious and suggests the metabolism is not yet hitting the afterburners .

I should add , prior to getting my afternoon temp over 36.5 , my blood results would have been interpreted by a GP as needing to reduce those dose.

However , if someone went to a GP without a thyroid condition , had my BP , Pulse and temperature , they would say you were in fine health.

37 in the afternoon is where the magic happens.

Best of luck.

EightiesChic profile image
EightiesChic in reply to JS33

Thank you.

No, absolutely everything you and other people are saying makes perfect sense to me. I must trust how I feel. I feel hypothyroid. Big time.

I'll be very impressed if my temperature gets to 37! It's never been that in the 3 years I've been testing.

I have the opposite problem with low body temperature though. I *feel* raging hot, all the time. At work I always have the air con on at full boat, in winter, struggle to sleep with a quilt etc. The warmer I get, the worse my thyroid is (underactive) - is that odd?

Thank you so much.

I'll give it 2 weeks and assess the situation.

I will re do my bloods in a couple of weeks too... or too sure exactly when if I'm increasing.

Anyway, thank you!

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