New results. Any advice gratefully received. - Thyroid UK

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New results. Any advice gratefully received.

Yeswithasmile profile image
37 Replies

On my t3 combo trial and feel just about as rubbish as always so did some early bloods.

On 75 mcg t4 and 20 mcg t3.

Levo was taken morning before about 22 hours before and t3 split into 3 doses and last 5 mcg taken 9-10 hours before.

So......

12/4/21 Tsh 2.63 T4 13.4 T3 4.2

17/5/21 Tsh 0.14 T4 9.9 T3 4.5

I am not due to see the endo for another month but I have decided to email him and wondered what I should request? I need to do something as I feel lousy.

Thank you in advance!

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Yeswithasmile profile image
Yeswithasmile
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shaws profile image
shawsAdministrator

You also have to add the ranges of the blood tests. and they are usually in brackets after the results.

Labs differ in their machines and, unfortunately, so do the ranges and members cannot respond without the ranges.

If you have the ranges, you can press the down arrow next to More and select edit.

When you have blood tests done it should always be at the very earliest, fasting (you can drink water and allow a gap of 24 hours between last dose of thyroid hormones and the test and take afterwards., always ask for a print-out for your own records and usually they will also have the ranges stated too.

Yeswithasmile profile image
Yeswithasmile in reply toshaws

Of course you do!! So sorry. I forgot!! It was Monitor My health but I will amend any minute. The blood was done first thing and nothing passed my lips apart from water. Sorry!!

shaws profile image
shawsAdministrator in reply toYeswithasmile

Don't worry and take your time.

Yeswithasmile profile image
Yeswithasmile

Edited post now. 👍

radd profile image
radd in reply toYeswithasmile

Ywas,

Ermm .. still waiting for ranges 😁.

Although comparing results as they are still without ranges, it looks as if you will need an increase in Levo which would hopefully help conversion & so higher T3 levels.

If you supply ranges you will get more informed comments.

radd profile image
radd in reply toradd

Also are those "total' or 'free' results?

Does it say FT4 & FT3?

Yeswithasmile profile image
Yeswithasmile in reply toradd

They are frees. Ft4 and ft3.

tattybogle profile image
tattybogle in reply toradd

'Ywas' seems to have accidentally made new post instead of editing this one ,,, ranges are on it ...here healthunlocked.com/thyroidu....

Yeswithasmile profile image
Yeswithasmile in reply totattybogle

Well I don’t know how I did that!! Thank you Tattybogle. I’m not a technophobe obviously just a pillock!! 🤷‍♀️🤣

tattybogle profile image
tattybogle in reply toYeswithasmile

lol ... just call me 'Dances with Pillocks ' then:)

Yeswithasmile profile image
Yeswithasmile in reply totattybogle

So glad you do! I thought it was an slow update issue and was getting even more confused than normal!

tattybogle profile image
tattybogle in reply toYeswithasmile

Did he get you to lower your Levo dose when he added T3 ?You could show him that low fT4 level and ask him to put it back up.

(But i think there is always something to be said for waiting longer to see how you settle into a dose... I know when i changed Levo dose by just 12.5mcg i the first 5 weeks were not the same as i felt like after 7 or 8 weeks. )

.... Odd, how the extra T3 seems to have lowered T4 level ,but not raised T3 level, but i have seen that in results here quite often when T3 is added ...don't know the explanation though.

Yeswithasmile profile image
Yeswithasmile in reply totattybogle

He did. I lowered to 75mcg from 100mcg. Obviously teva make 75mcg and I did mention that I had teva in the past and it felt like taking nothing but the he wrote another prescription for 75mcg and the chemist would only supply what was written. I admit I wonder if that’s not helped? I has levo spares for the first 6 weeks so used them instead but have been on teva since the raise to 20mcg.

I also have taken 8 - 10 weeks when I changed dose on levo. But I always felt a bit different like I could tell something was happening so could wait. Do you feel that? The lio, however, is different. Once the palpations subside, which is the only thing I actually feel, I’m back to feeling the same old lack of everything and can’t do anything more than a couple of times with any effort as the joint pain kicks in. It’s even in my fingers at the moment.

It is strange how the lio doesn’t really raise the ft3 but lowers the tsh? I thought absorption issue but unlikely with the lower tsh 🤷‍♀️

Thank you for your reply Tattybogle. I do appreciate it.

SlowDragon profile image
SlowDragonAdministrator in reply toYeswithasmile

Teva brand upsets many people and best avoided unless lactose intolerant

Which brand of levothyroxine do you normally get?

Yeswithasmile profile image
Yeswithasmile in reply toSlowDragon

Normally accord and workhardt. I just think it’s weak more than anything 🤷‍♀️

tattybogle profile image
tattybogle in reply toYeswithasmile

i won't have Teva anymore, there's not a clear issue with it except that it just seems to make me feel 'flat ' and slow and 'no mojo' after a week on it, so that's worth considering. i've had one time where for the first 5 weeks i was sure the dose reduction was wrong , but then very slowly i improved and i realised it was eventually better than on higher dose . But i've also had one reduction where i was pretty sure within the first week (due to constipation) and it didn't improve even though i waited 6 weeks so i put it back up... So 50/50 on that front.

The lower T4 /no T3 rise thing......i tend to think it's not as simple as absorption .. i assume it's something more complicated like you body altering it's deiodinase response, or better T3 availability meaning something else is going faster, so using T4 faster , (or getting rid of it faster ?) and maybe you then use the T3 up quicker, so it is going in , but it then goes through the system faster , so doesn't 'show up as higher on the blood test.... i just made that up ... i haven't really got a clue what actually happens, but i bet it's complicated!

xx

Yeswithasmile profile image
Yeswithasmile in reply totattybogle

Well there’s a mine field right there Tattybogle! What gets used first and what gets processed quicker??! 🤯🤯

As for teva ... yes it’s strange. I just knew that something was a miss when I got it on t4 alone but then it’s tricky when I could have done with a higher dose anyway so 🤷‍♀️. I have heard someone else mention it’s like not being on any levo at all so there is surely something in that??

I think i need to continually read until I absorb everything so I’m off to do reading on all of your above mentioned mind blowing reply! Lol. Wish me luck!!

Thanks for you reply Tattybogle x.

tattybogle profile image
tattybogle in reply toYeswithasmile

lol.. (i really did just make that up ) of course , even if you do work out what's supposed to be happening .. you can bet 50p that your blood results won't have read that book yet.

Yeswithasmile profile image
Yeswithasmile in reply totattybogle

Made up maybe but it all seems so complicated that I’ll stumble across a paper on it 🤣🤣🤣.

And yes you’ll be right about the bloods too!! Lol!

tattybogle profile image
tattybogle in reply toYeswithasmile

last time doctor leant on me to reduce levo and i agreed, and did it with test conditions exactly the same... the bloomin fT4 went up.. so he just think's i'm a liar now .. great . really helpful .thanks a lot blood goblins ;)

So if that can happen on just Levo , i'm prepared to believe 'anything at all' is possible when playing with T3 too.

Yeswithasmile profile image
Yeswithasmile in reply totattybogle

What is that about?? Was it summer? As opposed to the dark winter days? Had nothing changed? No diet or anything?? Same brand of levo? No doubt you scrutinised everything?! How absolutely typical. And no doubt you’re doctor gave himself a massive pat on the back. 🙄. Honestly!!

Yeswithasmile profile image
Yeswithasmile

I edited the original post so the ranges are on there but I did notice a lag between the app and the website.

Thank you for your input. I asked for an increase in levo last time and got another prescription for t3. I also got a blood test form for just t4 and t3. No tsh. Surprised me

I wanted to email but first I thought I’d ask if people were willing to give me their opinions so thank you for your reply.

radd profile image
radd in reply toYeswithasmile

Ywas,

You need to wait the full six weeks before any dose changes can be made.

Yeswithasmile profile image
Yeswithasmile in reply toradd

I realise I’m being premature but it’s five weeks tomorrow on the new dose and as I felt absolutely no different (pretty much pants) I did them yesterday wondering how much change could there be in a week? I thought I could email the endocrinologist over the weekend requesting he check the results over?

I know patience is a virtue 🤪

Karenk13 profile image
Karenk13 in reply toYeswithasmile

Lol yes Patience is definitely a virtue. I would give it more time some people it takes up to 8 weeks to "Feel different " regardless of what bloods say. Also in terms of your relationship with your specialist I would avoid emailling before your next appointment with private bloods and asking for review simply because you may be put in that box of an awkward patient which can work against you at future appointments when you are trying to suggest alternatives. Unless you are having unusual or extreme side affects I would wait for your appointment. I find Doctors alot more cooperative if they dont think you are 2nd guessing their treatment before it has time to fully take affect. Thats just my view I know others would disagree but a good relationship with your DR is essential for a good treatment plan 😊

Yeswithasmile profile image
Yeswithasmile in reply toKarenk13

Yes I think you’re right re: doctors may start thinking I’m too big for my boots lol but this is how I’ve been communicating with the chap throughout Covid. That said I have decided to wait till the 1st June as this is my next hospital blood test. So thanks for the input there. I don’t disagree with your reply at all. Very good advice. Thank you x

StPetes profile image
StPetes

Sorry you're not feeling well Yeswithasmile. My results are fairly similar to yours, so I'm really interested to see what works for you. I have the same issue with patience!

Yeswithasmile profile image
Yeswithasmile in reply toStPetes

Hi StPetes. How do you feel? Are your results an improvement from earlier ones? The patience thing sucks doesn’t it? I sound like a teenager!

StPetes profile image
StPetes in reply toYeswithasmile

Ever since I got a taste of T3, I've felt optimistic and 'magnetised'! The prospect of regaining my energy and motivation is wonderful. I just hope that I can maintain a balance and continue in the right direction. I feel like a Swiss watchmaker though right now and I'm trying not to worry too much about it.

Yeswithasmile profile image
Yeswithasmile in reply toStPetes

What a brilliant analogy! I have just looked at your last post. We must have started this journey at a similar time. I am going to reread that post when I get back from work and have more time.

I’m glad you have been feeling so positive about taking t3 and I sincerely hope that you manage to get the balance just right. I’m sure you will. I am sure I’ll get there too. I’m just disappointed to see that my levels aren’t more improved and worry what the doctor will do next. I don’t want to be too much work or worry because I fear he’ll just say it doesn’t work for me as he did say we’d stop if it didn’t help. Fingers crossed he’ll be reasonable 🤞🏻

Good luck with your journey StPetes. I hope you get all your cogs and springs flowing as they should 😊

SingingInTheSnow profile image
SingingInTheSnow

Hi there, so sorry to hear you are still feeling unwell.You might have a conversion disorder and you can either try to fix it by supporting your body with zinc, selenium, B12, iodine and magnesium or give T3-only a go.

Some people have a gene defect that affects the conversion of T4 into T3 and supplements won't help here. There is a really good book called "recovering with T3" by Paul Robinson. If you have a genetic conversion disorder you will feel unwell as long as you have any T4 in your body because it is useless for your body and you will never have enough T3. It takes a few days until it's all flushed out of your system and you can start with T3 ideally 3 times a day. Increase the doses very slowly, many people find fine with 3x20mcg, some need far more, depending on how well T3 manages to get into your cells. High cortisol or high oestrogen levels for example can cause problems here.

T3 does decrease the TSH even in a very low dosage, that's true. While being on T3-only, it can be a s low as 0.01. You mainly have to focus on fT3 and how you feel.

All the best!!

Yeswithasmile profile image
Yeswithasmile in reply toSingingInTheSnow

That’s very interesting SinginginTheSnow. I have read stuff about conversion and think I got this trial on that basis but didn’t know about the t4, well I had read people feeling it was blocking conversion etc but hadn’t really thought about that for me. I thought I was being difficult enough feeling I needed t3 but really wanted it to be straightforward which it doesn’t seem to be in my poorly educated opinion. Not losing hope yet though! Maybe this is just teething problems 🤞🏻

I am on the extras except iodine as I thought that was a no no for hashimotos.

I will get the book you mentioned. I have a couple but only glanced through them. However lots of people advocate Paul Robinson so I think I will get a copy. Thank you x.

SingingInTheSnow profile image
SingingInTheSnow in reply toYeswithasmile

I'm glad you found this helpful and I'm sure the book with help you on your way! I know it can be quite a long road but it is worth pursuing! There are different opinions on iodine and Hashimoto, but I have read several articles that (again) it is not that simple. Maybe this article can explain it better than me after a long day (((:

misslizzyhealth.com/blogs/i...

restartmed.com/hashimotos-i...

Get well soon!

Yeswithasmile profile image
Yeswithasmile in reply toSingingInTheSnow

So kind! Thank you. I will definitely take a look 👀 x.

Lotika profile image
Lotika

Ouch, poor you, those numbers are woeful and I can see that you must be feeling rubbish. I have had similar results recently on a trial, where things go backwards rather than forwards, for no apparent reason. Agree that increase in levo sounds like da bomb. And given you’ve been on 75 mcg for at least 8 weeks by now and T3 doesn’t take very long to stabilise at all, my endo would say it was time to change something. I tested yesterday and did my usual trick of treating myself to an instinctual dose change for being a big girl and pricking myself repeatedly in the fingers before seeing the results (due tomorrow I hope) and upped levo from 75 to 100 mcg. Immediately felt human enough to clean the kitchen from top to bottom, for the first time since being on the trial, which I add for the sake of giving you hope, really... Damn, it sparkles! They don’t call it a trial for nothing though, do they? Now that I’m feeling a bit more like my old self I can say for certain that it was torture being under medicated for what would have been exactly 6 months on Saturday! And being told to wait... I feel like I lost 6 months of my life. So, I suppose I’m saying at least you know you’re not alone and hang on in there, as hard as it is. Still, I think this could be The One... endo permitting, obvs! If I’d known it would take 6 months of hell to get this far, I wonder if I would even have started the trial... honestly that bad. As you know only too well from personal experience, of course.

Yeswithasmile profile image
Yeswithasmile in reply toLotika

Oh you have said exactly how I feel!! It is a trial!! Go you though, cleaning the kitchen!!! Mine is a absolute tip. Not all that unusual but I have been known to try and be a bit houseproud every now and again. Not atm. I couldn’t give a toss! 🤣

I really hope your increase of levo makes you feel better 🤞🏻🤞🏻 and that this is the one for you because 6 months must feel like an eternity!! When you’ve felt poorly for such a long time and finally dare to hope that there is something that will help, it’s so difficult to have the patience but hats off to you. You have done so well!! I sincerely hope you have it now and that you feel tip top for the summer and beyond!! I would love to know what your results are when you get them. x.

Lotika profile image
Lotika in reply toYeswithasmile

Thank you- will post results when they turn up! I’m not sure I’ve been strong about it, mind... at best, pig-headed as I didn’t want to lose the trial and chance to get an NHS prescription... we will certainly have earned them if/when we get there!!

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