Testing on NDT or T3 or Combo

[Delgor]

There have recently been posts by people querying whether testing by endos after having food and medication is right or not. Obviously they are testing to see what the peak levels in our blood are at that given point of day but as some have rightly said, we won't be having that level constantly in our body throughout the day.

I had never heard of this before until about a year ago even though I've been on NDT for almost 30 years but I had to do this for a private endo who is on the TUK list and he immediately told me to reduce my medication based on this alone (my T3 was 8.2). When talking to my hospital endo about the possibility of having combo treatment he also asked me to test 4 hours after food and meds which I didn't do after asking for advice on this forum.

I would be very interested to hear from others if they too have been asked to test in the above way and possibly what their T3 result was on doing so. TIA

[Lalatoot]

Delgor I have been told by 2 endos to test 2 to 4 hours after t3 dose. Can't tell you the results because I have never done it. I prefer to test the average ft3 level.

[Delgor in reply to Lalatoot]

Thanks Lalatoot - there definitely seems to be different view points on this subject so I felt the need to investigate further👍

[Lalatoot in reply to Delgor]

However you choose to do it is up to you. What is important is that you interpret the results according to whether you measured the peak, the average or the low point. It's the interpretation of your results that is important.There was a discussion on here many moons ago about the testing of ft4 and the gap left after a dose. The interesting part of the discussion featured on the nature of the peak. Some folks have a very steep peak while others are broader. The gist of the discussion was that for the steep peakers the apex is brief and falls away rapidly. This means that timing is critical to compare like for like as there is a steep fall away from the peak in a very short time spell. On other words it is difficult to hit the true peak each time as it is such a brief occurrence. The discussion went onto suggest that this might be a reason for testing at the average or at the low points. The average is done by taking bloods halfway between doses. The low point is not a sharp spike like the peak so there is more leeway for comparing like for like - the low point is found by test according to your dosing gap so 24 hours if you dose once daily or however long you leave between doses .

I dose levo and t3 at 6am and levo and t3 at 10pm. I measure my ft4 at its lowest so leave a 16 hour gap between my last dose and testing. I measure ft3 at its average so an 8 hour gap. Why? Because my surgery doesn't do early morning thyroid bloods. TSH is irrelevant to me. So I test at around 2pm. This means that I take my nighttime doses as per and in the morning I take t3 only leaving my levo till after the test. I fell into this protocol more by accident than anything but then found I could make some sense of it as long as I interpreted my results accordingly.

[Delgor in reply to Lalatoot]

Thank you so much for that - it certainly helps me to make sense of things because I didn't agree that I should reduce further because of a snapshot blood test. I was under Dr S for years who dosed according to symptoms being relieved - not quite sure how I ended up in this mess but with the valuable help of the wonderful people on this forum I hope to get myself sorted. Thank you again!

[waveylines in reply to Delgor]

Ahhh lovely Dr S. The voice of reason and not a slave to blood tests! To be honest this just shows the limitations of blood tests! I wonder how these ranges were truly set. Were they set purposely at people's peak, medium or lows.....? I doubt. Were they set after people had eaten or before and so forth. It shows the flaws in a blood test when the truth is thyroid levels go up and down and are not constant, especially T3. Hit the cold of winter or the heatwave of the summer then your dose will alter yet again. This comes from the idea that thyroid levels are a constant and we all do well on a fixed dose! (May well work well for iron or b12 levels etc but not hormones that fluctuate normally.) Dr S approach was far better, making you aware of signs and symptoms, temp and pulse also means you can self regulated. But big pharma knows there's lots of money in blood tests as they have to be repeated.....so now we are a slave to them! Dont get me wrong they can be useful but most certainly not the main factor. To make it work on the NHS you have to work out when your TSH will be at its highest so you can get the treatment you really need.....as science shows that treatment via TSH will always lead to under treatment. So your endo has gone for the highest point of thyroid levels, lowest of TSH so yes you sill be under treated if you follow that protocol.And any combination treatment suppresses the TSH.

I'm on a NDT Have been for a long time. My TSH is negligible. The ft3 measurement is the most volatile and goes up and down throughout the day as needed when the thyroid works normally.....no medic worries about that!!

Post Dr S, yes I was a patient of his, I managed to see an old school NHS Endo - he was lovely. He told me for get the TSH it doesn't matter, keep your thyroid hormone in range and you will be fine. He used to measure them towards their lowest. Blood test first thing, fasting no ndt that morning. (I take mine daily) But he was also very interested in how I presented, my signs and symptoms. Good luck.

[Delgor in reply to waveylines]

Thank you waveylines for your long reply and oh how I wish Dr Skinner was still here! It's only in the past couple of years that things have gone haywire for me and had my first foray into seeing endos and so not au fait with the way they do things. As you rightly know Dr S paid little attention to blood tests and I can remember having to tick boxes on his symptom list every time I saw him and at the beginning it was 19 out of 20 which came down to 1 out of 20. This was after I had been told I had CFS and would just have to live with it (that's another story). I've learnt so much from the wonderful people on this forum even though I've read numerous books - sharing other people's experiences is very enlightening. Thank you again for responding. 😁

[waveylines in reply to Delgor]

Awww ....apologies for the long reply. 🙄 I'm sorry you are having problems re your thyroid. This site is great as u say. And you will get really good advice. Ive found it vry helpful over the years....especially getting the other factors like B12 in place. These days its hard to find a competent Endo who knows about NDT. Blood tests were designed for synthetic thyroid hormones, not NDT. Rightly or wrongly I do the tests for the NHS to get me through so can continue my NHS treatment then for giving me proper info back.

[GlowCoach Administrator]

My private T UK Endo told me to leave 8 hours from last dose of T3 before test. I'd be inclined to ignore the 4hr recommendation.

[Delgor in reply to GlowCoach]

Sorry Jaydee I think my message wasn't absolutely clear as yes 8-12 hours is the usual time before being tested but some endos are initially testing between 2-5 hours after food and meds to see if the meds are suiting you.

[GlowCoach Administrator in reply to Delgor]

Sounds like some sort of excuse for him/her covering their back by prescribing T3. Yes I did understand what you said. How can a blood test tell if T3 is 'suiting you'?

[Delgor in reply to GlowCoach]

Obviously they go by the peak T3 level and yet my normal testing regime had both T4 and T3 in range (TSH has always been 0.01)

[GlowCoach Administrator in reply to Delgor]

There really needs to be some international guidelines for when to test, not Endo's making it up as they go along. I'm sorry your dose got reduced.

[Delgor in reply to GlowCoach]

No my dose didn't get reduced - he made me feel very stressed out and I wasn't willing to pay somebody to do that to me so that was the end of him🙃

[waveylines in reply to Delgor]

Ha! Good 4 u. There are some advantages of private treatment!! After Dr S sadly passed I had to quickly find an Endo as I was starting treatment for cancer. I saw this awful woman who wanted my thyroid levels low for my operation! I quickly got rid of her (private) & my GP agreed to leave things as is until I was over treatment. Luckily my oncologist clearly though the Endo was bonkers and told me we want your ft3 high not low to get you through treatment. He was appalled. He knew far more than her. There are a lot of Endos out there who know very little about treating g hypothyroidism. Finding that golden nugget of a specialist who knows is really difficult these days.

[Delgor in reply to waveylines]

Yes I read your post the other day and realised that you had had bc the same as me - mine started after going overactive after a virus for which I had a thyroidectomy. Now realise from a paper put up by Hellvella (I think) that the breast and thyroid share the same endocrine signalling and the breast is affected by alterations in the thyroid which obviously was the case for me. Obviously it can work in reverse so I was checked for thyroid cancer but even though I've got a multi-nodular goitre it isn't thought that I have thyroid cancer as yet (fingers crossed). Take care!

[waveylines in reply to Delgor]

Sorry to hear you have been through it too Delgor. I don't think for me that my bc was triggered by my hypothyroidism as it was well managed for a fair few years before it kicked off. I do think undiagnosed gluten intolerance may have had a part to play in the sense my body was in distress & a lot of stress long term. BC as you know is very complex but it makes sense that there would be a connection. I've just heard on the news that they organising a debate as to whether the NHS can survive. And so the prep starts.....

[Delgor in reply to waveylines]

Oh I do agree that stress especially long term can have adverse affects on the body both mentally and physically. Wish I had of known what I now know years ago! Yes it's a little scary that the NHS is in such trouble - hard to believe that we were the envy of the world at one time - very sad😰

[waveylines in reply to Delgor]

Absolutely.....I certainly couldn't have afforded to pay for all the expensive drugs, chemo, rads, and lots of surgery.....never mind the mri scans etc and numerous consultations & the care. I really hope the nation fights hard not to let it go.....because the suffering will be even greater. Xx

[Delgor in reply to waveylines]

I second everything you have said - if I had been born a hundred years ago I would most certainly have died about 30 years ago and I'm extremely grateful to still be here. However, I don't always think the money is going into the right channels and they definitely need to do something about the thousands of people who are in hospital and have no need to be there but can't go home because of lack of after care.

I had better stop or this post will never end - lol! Take care!

[TiggerMe Ambassador]

I must admit I test a little nearer the dose for my records to see my peak and follow 'our' rules for the official bloods, with the theory I'm in control rather than risking an enforced cut back, always good to have a little in reserve😏.... bloods due Monday so it'll be interesting to compare against last weeks MMH results 🤞

[Delgor in reply to TiggerMe]

Thanks Eeyore - I too am doing the MMH screen test for the first time on Monday morning so will be interesting to see how that goes.

[TiggerMe Ambassador in reply to Delgor]

Remember the drill... bit of bouncing around to a tune, warm hands, do it standing up 💃🙃

[Delgor in reply to TiggerMe]

I hope your talking about blood testing😂

[TiggerMe Ambassador in reply to Delgor]

Feel free to use the drill in any situation you choose 🤗it is remarkably versatile 😊

[Delgor in reply to TiggerMe]

This is terrible - I'm now imagining a myopic donkey😂

[tattybogle in reply to Delgor]

even worse ~ i'm now inagining a myopic donkey trying to do a fingerprick test using a Black and Decker

[Delgor in reply to tattybogle]

🤣🤣🤣

[tattybogle in reply to TiggerMe]

drilll ? .. i hope you're no advising people to use a black and decker to get blood out Eyesore .. or i'll have to report u lol

[Delgor in reply to tattybogle]

I can't take any more - my tummy hurts🙏

[Lalatoot in reply to tattybogle]

No tatty, eyesore was speaking about gym drill. Get your flannel navy knickers looked out

[tattybogle in reply to Lalatoot]

oh i see . so ~ " a myopic donkey wearing blue gym nickers doing start jumps" ... ok i've got the picture now , Thanks for clearing that up Lalatoot

xx

[Lalatoot in reply to tattybogle]

Always happy to mess with your mind, Tatty.

[TiggerMe Ambassador in reply to tattybogle]

Honestly you lot! I just nip off to make a toad in the hole and you've all been tarnishing my knickers!🤣🤣🤣 I can tic tok the weeknd's blinding lights with the best of them whilst brandishing a power tool I'll have you know 💃🩲

Have you all been on the gin again?

[Delgor in reply to TiggerMe]

Oh no please - a myopic donkey, wearing navy blue knickers, doing start jumps, whilst trying to cook a toad is just too much😜

[tattybogle in reply to TiggerMe]

What do you mean 'again' .... that would imply stopping for a break at some point?

.introducing toads and holes into the picture is asking for trouble . in my opinion .

[TiggerMe Ambassador in reply to tattybogle]

it was delish 😋

[tattybogle in reply to TiggerMe]

pleased to hear it .

(whatever you do ,don't give that donkey any Gin .. it's already got quite enough to deal with , without being tipsy and giggling)

[Delgor in reply to tattybogle]

I think I'm going to have to retrieve the little red car with a sofa on top to cart the inebriated donkey away!

[tattybogle in reply to Delgor]

best do it in the dark ,and stay on the B roads away from the camera's .... last time i did that i got 3 points and a £60 fine.

[Delgor in reply to tattybogle]

I'm not surprised you got fined if you got caught with a sofa and drunk donkey on the roof of your car whether it was a B road or not .........

[tattybogle in reply to Delgor]

we only got done because it was playing the piano so loudly .. what an ass .., i'm never taking it out again.

[Delgor in reply to tattybogle]

I think it died - probably eating the toad did it😢

[tattybogle in reply to Delgor]

lol yes "Toad in the Donkey" doesn't sound very healthy ...i'll warn mine not to try it .

[Delgor in reply to tattybogle]

lol - I'm off to have a cuppa - broken hearted that Eeoyre has gone and Eyesore replaced him😰😢

[tattybogle in reply to Delgor]

"Eeoyre ".. it that an Irish Eeyore ?

[Delgor in reply to tattybogle]

typo error - was worn out with laughing😂

[JaneCooper67 in reply to Delgor]

what is MMH please? I tried reading on to get the just but … well, Donkey 😂

[Delgor in reply to JaneCooper67]

MMH - Monitor my Health - they have introduced a new test which includes thyroid and diabetes etc. for £65. Yes you'll have to excuse all the gibberish about donkey and car etc. they were referring to previous posts when we had all been laughing😁

[JaneCooper67 in reply to Delgor]

that’sa great price! Thanks

[Baggiesfan in reply to JaneCooper67]

Monitor My Health blood test Jane

[TiggerMe Ambassador in reply to Delgor]

Bloods at dawn...I'll be thinking of you & Tatty!💃🤸‍♀️🐃🚗🛋️👮‍♀️🚓🎫🤣🤣🤣

I'm going to take a gentle clip clop round to the surgery whilst you jump around... don't do yourself a mischief 🤗

[Delgor in reply to TiggerMe]

So glad you survived afterall - I have never giggled so much for a long time - now back in serious mode - test tomorrow and I'll be thinking of you too🤗🤗🤗

[TiggerMe Ambassador in reply to Delgor]

It was a giggle, I lost the plot when I came back after the toad got devoured to cars with sofas/donkeys and tickets!!???? 🤷‍♀️It's like reading back the weirdest play script!

Thinking about it I'm absolutely going to wipe tattybogle from my mind tomorrow as I'm going to ask for a BP reading 🤨🩲

[Delgor in reply to TiggerMe]

Didn't you see the post that Tatty replied to by telling them a story about a little red racing car who ended up in a corner with a sofa slung on top of it? I feel really guilty now for getting so carried away and was fully expecting admin to come down on us - I must learn to do better!

I did see that your BP was low but is that a new thing as possibly some meds or supplements might be causing it?

[TiggerMe Ambassador in reply to Delgor]

Nope didn't see that tangent! Admin are very good if we play nicely..... Yeah my BP has dropped along with my T4 level? Nothing else has changed?

[Delgor in reply to TiggerMe]

Will have to ask Tatty if she can give us a link as it was really good! Probably you will be asked to take a couple of bp readings daily over a week or so if doc at all concerned - my systolic is too high but I want result of thyroid blood test before I say anything in case there has been a change there. 🤷‍♀️

[tattybogle in reply to Delgor]

 TiggerMe Notes on the script for "The Fiasco of The Little Red Car ,The Sofa ,and the Inebriated Donkey " healthunlocked.com/thyroidu...

The little red car is based on a true life character ~ 'Georgie' (my grannie's Austin Big Seven) , who did indeed live in a barn, stood on brinks with an upside down sofa on his head. Georgie looked out of the open barn doors at the Geese in the garden, and my brother "taught me to drive" in him when we were little.

The plot has been blatantly plagiarised from "Chitty Chitty Bang Bang" and "Reddy at the Race Track " etsy.com/listing/1348305999...

[Delgor in reply to tattybogle]

And again 🤣🤣🤣🤣🤣

[BiscuitBaby]

Hi DelgorI've been told by 3 nhs endos to test 4 hours after dose. The private endo didn't even suggest a timescale. I don't know what the results were because I didn't do it. They were so adamant about it, its written all over the letters they send out.

[Delgor in reply to BiscuitBaby]

This is all very interesting and thank you for replying Biscuit Baby.

[GlowCoach Administrator in reply to BiscuitBaby]

They really are determind to keep us unwell. Grrr!

[MaggieSylvie]

I do my tests before 9.0 but my surgery have never requested that I do it at any specific time. So ...🙁😢😱🙃?

[Delgor in reply to MaggieSylvie]

Hi Maggie,

I don't think I worded my original question too well as it's not the usual blood testing times I was querying ie when we would fast overnight, have nothing to eat or drink other than water and no medication until after the test. It's the fact that some endos before prescribing thyroid meds want you to eat, drink and take meds to see what your peak absorption is in a given day and then dose you according to that. Anyway Lalatout has given me a good explanation which has helped to understand the reasoning behind it so I'm now a happy bunny. Hope you are keeping well and take care😁🙏

[MaggieSylvie]

Oh thanks Delgor for explaining. I am not at that stage (yet?), having not been properly diagnosed. I dread to think what is ahead for me if I ever am.

[Delgor in reply to MaggieSylvie]

You may be perfectly fine Maggie as there are thousands out there who don't have problems but obviously this forum is for people who do, or those that have had problems in the past and are now so generously trying to help others. It's good that you have already found it!

[MaggieSylvie]

My doctor gave me Levothyroxine, based on my low TSH. I refused it and she said that my thyroid "would be unlikely to support me for the next year". I believe I have proved her wrong and now have a different GP.

[Delgor in reply to MaggieSylvie]

Low TSH usually signifies hyperthyroidism but had a quick flick back on your posts and saw that some of the more knowledgeable members of the forum had already written to you - just as well as I'm certainly not up on all the different thyroid diseases that there are. Hope all goes well with your new GP and you finally get sorted. Best Wishes!

[MaggieSylvie]

Yes. How long ago was that? The more knowledgeable members influenced me in several ways. I don't know what I'd do without them! I don't know whether my new GP would be interested in testing thyroid.

[Charlie-Farley]

Girlslovescifi this one 🤗