Results Back.....Please help: Couple of months... - Thyroid UK

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Results Back.....Please help

Jefner profile image
26 Replies

Couple of months ago I decided to move my 10mcg T3 away from my usual morning waking time, basically to see if it helped my awful morning anxiety. I also dropped my T4 dose from 125mcg (which I have been on for many years and it usually sits at a normal place within the range) down to 100mcg as on my April test it showed a little high. I have been taking 5mcg T3 along with 100mcg T4 around 4pm and then my second 5mcg T3 around 1-2am as I have my Magnesium around 11pm.

Tested Monday morning around 8.45am with last dose T3 around midnight Sunday. Think I took my T4 dose late Sunday afternoon so even though it was over 24hrs it wouldn't have made much difference on my T4 result being the storage hormone?

Here are my last 3 test results. Again after dropping my T4 by 25mcg (which I tried a long while back), it's gone too low again.

After around a couple of weeks of moving my T3 away from waking time and split dosing, I did notice my anxiety wasn't quite so severe on waking and actually felt a little better in the short term. I know it can be stimulating and may have affected my cortisol levels in keeping them higher (which my April results show). I thought I was onto a winner and then gradually started feeling the negative effects of lowering my T4 and because it looks like I am allround undermedicating now. Have certainly been feeling the effects of it the last 3 weeks or so, especially on the fatigue, no energy and needing more sleep and anxiety worsened, feeling cold . And as usual my T3 is still too low.

Sept 2022) - 125mcg T4 - 10mcg T3 (taken as a whole in mornings)

TSH L 0.04 (0.27 - 4.20 mU/L New range & unit)

T4 Total 124.0 66 - 181 nmol/L

Free T4 18.3 (12.0 - 22.0 pmol/L)

Free T3 3.89 (3.1 - 6.8 pmol/L New range)

April 2023 - 125mcg T4 - 10mcg T3 (taken as a whole in mornings)

Cortisol (Random) H 534.0 6am - 10am 166 - 507 nmol/L New range

TSH L 0.03 (0.27 - 4.20 mU/L New range & unit)

T4 Total 124.0 (66 - 181 nmol/L)

Free T4 21.8 (12.0 - 22.0 pmol/L)

Free T3 4.46 (3.1 - 6.8 pmol/L New range)

Anti-Thyroidperoxidase abs H 41 <34 IU/mL New units

Anti-Thyroglobulin Abs 52 <115 IU/mL New units

3rd July 2023 - 100mcg T4 + 5mcg T3 4pm ---5mcg T3 12-1am

Cortisol (Random) 255.0 6am - 10am 166 - 507 nmol/L New range

TSH 1.10 (0.27 - 4.20 mU/L New range & unit)

Free T4 12.0 (12.0 - 22.0 pmol/L)

Free T3 3.56 (3.1 - 6.8 pmol/L New range)

======================================================================

I am just so tired of all this, it's just years of hell. I know all the regulars are screaming at me "we told you to increase your T3 all along" which I know, but that was at the time when I was taking it all in one dose in the mornings which I think was worsening my waking anxiety and I was too scared to add (this was before trying the split dose method)

I am a late riser and current regime is I set my alarm to take my AD around 8.30am, go back to sleep and before I stir around 10-11am I take 10mg Propanolol (trying to wean off it) along with 1mg Diazepam. 100mcg T4 and 5mcg T3 at around 4pm, second T3 dose late night 2-3 hrs away from my Magnesium

So what do I do now? Go back up to my 125mcg T4 and add another 5mcg T3 somewhere? What is the ideal spacing between T3 doses?

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Jefner profile image
Jefner
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26 Replies
humanbean profile image
humanbean

I also dropped my T4 dose from 125mcg (which I have been on for many years and it usually sits at a normal place within the range) down to 100mcg as on my April test it showed a little high.

You dropped your T4 dose by 20% to 100mcg having been on 125mcg which is far too big a change when your Free T4 is still within range, even if it is very high in range.

I would have suggested staying on 125mcg 6 days a week, and taking 100mcg on, say, Wednesday. This would reduce your average T4 dose from 125 mcg per day to 121 mcg per day.

Or perhaps change to 100mcg on Wednesday and Sunday, and 125mcg the other 5 days of the week. This would reduce your average T4 dose from 125 mcg per day to 118mcg mcg per day.

At your stage in the "treating hypothyroidism" process I would suggest making very small changes, rather than big ones.

Jefner profile image
Jefner in reply to humanbean

i was advised to drop my t4 down to 100mcg, I was on 125mcg at the time of both tests in sept 22 and april 23 and look how high it got in april which is when I was advised to drop it but as you say maybe that 25mcg was in fact too much. So what you are saying then is to basically have 125mcg for 5 days a week only

humanbean profile image
humanbean in reply to Jefner

Who by?

Jefner profile image
Jefner in reply to humanbean

if you are asking for a name I can't remember what I did yesterday let alone that far back on my last post. I think most who posted suggested I needed to lower my T4 as it was too high. Also not sure what you mean by "at my stage in treating hypothyroidism"

humanbean profile image
humanbean in reply to Jefner

Wherever the suggestion came from you do have the option to ignore it or tailor it to your circumstances, even if it came from a doctor.

Doctors seem unable to think of increasing or reducing prescribed medicine doses up or down by one or more tablets at a time.

Jefner profile image
Jefner in reply to humanbean

it was on here hun, not my Dr. I monitor my own thyroid with the help from you guys and just let her know what I am doing. How do I find my previous posts on this site, never been able to work it out

Decant profile image
Decant in reply to Jefner

Click on your "Profile" and then the "Posts" section.

Jefner profile image
Jefner in reply to Decant

got it thank you

humanbean profile image
humanbean in reply to Jefner

So what you are saying then is to basically have 125mcg for 5 days a week only

I was suggesting that you have 100mcg T4 one day a week AND 125mcg T4 on the other 6 days a week.

Alternatively, take 100mcg T4 on two days a week AND 125 mcg T4 on the other 5 days a week.

Whatever you do with your T4 dose, I would suggest continuing with out changing your T3 dose.

Jefner profile image
Jefner in reply to humanbean

as my T4 is currently so low, should I start by taking 125 for first 7 days and then titrate it down to 100 for 5 days and 125 for 2, although SlowDragon has suggested 112.5mcg daily as next step. I know it's trial and error but so unsure of what direction to take with the different suggestions

DippyDame profile image
DippyDame

No wonder you are struggling!

Looking at your hormone levels 3/8/23 on 100mcg T4 + 10mcg T3.....

Reducing levo was a mistake causing your FT4 to fall to the bottom of the range and guaranteed to make you feel under par.

As expected FT3 also fell

So....both Frees are now abysmally low.

Also....the therapeutic effect of both Levothyroxine and T3 can be decreased when used in combination with Propranolol. So you may be getting less benefit from the replacement hormones than expected. Your plan to wean off it may be wise!

Since FT4 is so low... in your shoes I'd be looking to increase to 125mcg daily

Going by previous labs that should raise your FT3 further into the ref range....because your T4 to T3 conversion appears reasonable.

I might be inclined to take the full 10mcg dose of T3 at bedtime and the 125 mcg T4 in the morning.

We only change one thing at a time otherwise we don't know which is doing what....so I'd start with the levo.

( I need high dose T3-only to function and take my full dose at bedtime....and sleep well!)

We really need to experiment to find out what suits us best!

I would maintain that protocol for 6 weeks then re-test ...the results should point the way forward re any dose adjustment.

Goos luck!

Jefner profile image
Jefner in reply to DippyDame

I was recommended by users on here to reduce my Levo by around 25mcgs from my previous test. My T4 levels have always been pretty good on 125mcg; no idea why it went higher than normal on my April test (the beauty of having Hashi's I suppose). it's just my T3 which continued to be too low in the range. I do not convert well and never have unfortunately hence my adding T3 into the equation a few years back but my levels are still too low in the range on 10mcg, they should be around 70% in the range but they never have been so I need a little more. As for the Propanolol I have been slowly weaning off it for about 3 months now and also take my thyroid meds well away from it. It's all trial and error and I seem to get it wrong every time and I just go backwards all the time. I don't want to take my full T3 dose at bedtime, I did try it and just left me with palps and difficulty in sleeping, plus I take my Mag at night and because of my sleeping patterns I don't always leave a big enough gap ie. I take my Mag later than normal because I have forgotten and then have to stay awake longer to fit my T3 in. Just upping my T4 again won't improve my T3 levels, they never really have from all my previous tests

I don't have enough years left to be able to find my sweet spot and enjoy a normal life again because all the tweaking takes too long. After 19yrs of this shite I don't see anything really changing for the better to be honest

DippyDame profile image
DippyDame in reply to Jefner

You're absolutely right, it is trial and error.....and Hashi's adds to the challenge

I wish I'd known 50 years ago what I now know....and I still don't have all the answers!!

As a last resort raising T3 would likely help....would you consider that?

You may feel worse when you first increase as the body adjusts to the dose change.....been there, got the T-shirt!

I'm 78 and still tweaking occasionally

Wish I could help

Jefner profile image
Jefner in reply to DippyDame

i won't be here struggling with this if I make your age, I don't know you found the strength tbh, I just don't have it in me, I am 61 and struggled with anxiety since childhood and for it to then worsen when I went into menopause, low thyroid and hashi's, nothing I try seems to get rid of it and that's all I want, just my anxiety to go and I can cope with everything else

DippyDame profile image
DippyDame in reply to Jefner

The brain needs huge amounts of T3......give it ago you have nothing to lose!

Jefner profile image
Jefner

I don't know what to do anymore tbh, I keep receiving conflicting info. I took advice from a couple on my previous post by dropping my T4 and look where it got me, feeling very poorly again and undermedicated. Maybe I should just go with my gut feeling :(

Jefner,

I have had anxiety for as long as I can remember which eventually spilled over in the OCD. I had severe OCD until about 3 months ago. Now that I finally have my T4 and T3 higher in range I wouldn't consider myself to have OCD anymore. Or anxiety come to think of it.

If I were you I'd be working very hard to get that T3 up. I'd bet everything I own that it's what's causing your anxiety.

For me, the anxiety was my body screaming at me that something was wrong. I just didn't know what. Turns out it was a dicky thyroid.

Jefner profile image
Jefner in reply to

reading your bio you are in perimenopause already. Oh boy are you in for a rough ride with that, Funnily enough I was diagnosed hypo around the time I went into peri. My anxiety has been around since I was a kid (caused by stuff I didn't get as a kid I have now discovered through therapy). Came to a height when I was around 17 and ruined my life for years until I went on an SSRI which turned my life around completely for the first time in over 25yrs. Stopped working a few years ago and despite upping it, has had no effect. Going back to my 125 T4 and then in about a week I am gonna add another 5mcg T3 and see how I feel on that

1tuppence profile image
1tuppence

Jefner, it seems to me that what you need right now is a hug. Please count yourself hugged xx

Jefner profile image
Jefner in reply to 1tuppence

thank you, I need such a big hug you wouldn't believe and it's so difficult being on my own with no friends, life is so much harder with agoraphobia too

Jefner profile image
Jefner

was hoping for some more advice from the regs on here but it seems everyone is sick of me as much as I am sick of myself

SeasideSusie profile image
SeasideSusieRemembering in reply to Jefner

Jefner

I know you sent me a PM asking me to look at your post, I don't know if you messaged any other "regs", or whether your comment above was aimed at me but I am very ill myself and can only do so much. Unfortunately your situation is complicated, I can't get my head around it and it's most likely beyond anything I have experience of so it's not possible for me to comment.

Jefner profile image
Jefner in reply to SeasideSusie

oh susie hope you feel better soon hon

1tuppence profile image
1tuppence in reply to SeasideSusie

Sorry to learn you are so unwell SeasideSusie.....you help so many of us, thank you. Sending wishes for better health as soon as possible xx

SlowDragon profile image
SlowDragonAdministrator

many of us need to fine tune dose

For myself 125mcg levothyroxine every day is too much

112.5mcg per day is too little

After much experimenting I now take 125mcg 4 days and 112.5mcg 3 days per week

Suggest you try 112.5mcg daily as next step

Retest in 6-8 weeks

similarly T3 often needs fine tuning …..but not at same time as changing Levo

Jefner profile image
Jefner in reply to SlowDragon

My levo comes in 100 and 25 so I need to chop a 25 in half? As my T4 is so low at the moment I don't think 112mcg daily will get it back up to where it should be, going by all my past results on 125 which has mostly been pretty good, so maybe I should start off with a full 7 days on 125 and then tweak the doses?

My T3 has always been very low in the range since I started it and everyone on here has always said I need to increase it which I want to do by another 5mcg but are you saying leave that increase alone until I get my T4 back to a reasonable number?

HumanBean has suggested

"I was suggesting that you have 100mcg T4 one day a week AND 125mcg T4 on the other 6 days a week

Alternatively, take 100mcg T4 on two days a week AND 125 mcg T4 on the other 5 days a week.

Whatever you do with your T4 dose, I would suggest continuing with out changing your T3 dose"

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