so tired….: Hi there can I get some advice on... - Thyroid UK

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so tired….

Hashiboy profile image
41 Replies

Hi there can I get some advice on fatigue?

I’ve been on T3 only for a while and about eight weeks ago my endo suggested adding in some T4 as he felt I’d never had a reasonable trial of combo therapy. We thought this might help with peaks and troughs of energy across the day. So for about three months I’ve been on 25mcg T4 and 45mcg T3 alternating every other day with 50mcg T3. Tests last week gave following results:

TSH level 0.04 mlU/L [0.38 - 5.33]

T4 level 3.7 pmol/L [7.9 - 14.4]

T3 level 5.3 pmol/L [3.8 - 6.0]

I’ve suddenly started to feel very fatigued and feel like I could sleep all day and my fitness watch says my resting pulse is often about 55 to 60 BPM

I won’t see my endo for a month but I guess the introduction of T4 is causing this.

I really welcome any advice on what’s going in and what might be good next steps.

Thanks

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Hashiboy
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41 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Firstly alternating doses of T3 don't work as it acts immediately unlike Levo which is a storage hormone. Does your Endo know what he's doing?

25mcgs Levo is really neither here nor there as a combination dose. It's probably just making everything worse.

I'd recommend finding a diet that suits you to help with energy fluctuations throughout the day.

Depending on when you took your last dose of T3 your FT3 is at 68%.

Hashiboy profile image
Hashiboy in reply toJaydee1507

Thanks Jaydee1507 just feeling like my meds are a bit out of whack. Is it possible that overmedication causes fatigue ? I’ll take a look at my diet too, I did the ZOE thing so I’ve got dinner good info on that.

Jaydee1507 profile image
Jaydee1507Administrator in reply toHashiboy

So when was your last dose of T3 before the test? Can't really know where your results are without knowing that.

How did you feel on T3 only? Whats the comparison to now?

Do you usually split your dose or take it all at once?

Have you tried a strictly gluten free diet?

Hashiboy profile image
Hashiboy in reply toJaydee1507

Hi there, yes all tests were 14 hours after last T3 and T4 (my endo requested all tests I do are 8am before any meds )

My dosing schedule is

8am 25T4 and 20 T3

1pm 15 T3

5pm 10 T3

8pm 5 T3 on alternate days

Was feeling okayish on T3 only but dinner peaks and troughs.

I’ve never tried gluten free, I’m not sure I could sustain it 🤔

This evening I took my 8pm T3 and got relief from fatigue but it’ss but up and down. Weirdly I feel kind of better with the added T4 but starting to feel more tired.

Jaydee1507 profile image
Jaydee1507Administrator in reply toHashiboy

Its definitely possible that overmedication can cause fatigue.

Your FT3 is at 68% 14 hours after taking last dose of T3 so recommended timing to see stable blood levels is 8-12 hours. Therefore your FT3 would be a bit higher had you tested as recommended.

Gluten free does sound daunting and take some dedication especially in the initial stages but can be very rewarding. There are gluten free options almost everywhere now and if I really don't want to get caught short then I take something with me. Have a think about it.

Hashiboy profile image
Hashiboy in reply toJaydee1507

thanks Jaydee1507

Charlie-Farley profile image
Charlie-Farley in reply toHashiboy

I went gluten free to humour everyone with no expectations- I felt soooo much better

Nothing tastes as good as gluten-free feels.

I’m strictly and never going back.

Got to dash (packing for a move)

😊👍

Hashiboy profile image
Hashiboy in reply toCharlie-Farley

I love wholewheat pasta ! I tested negative for celiac disease but my genes were analyzed as part of a research project and they told me I have done genetic markers for increased susceptibility to gluten sensitivity. I did the ZOE thing and that says I’m great at processing carbs but terrible with fat so anything in the keto direction would be a no no. I get the idea gluten free might be a useful idea but I wouldn’t know how to start or how long to do it. Most gluten free food I see on shelves is low fibre, ultra processed and packed full of gut harming emulsifiers and stabilizers to compensate for the lack of gluten. Rice has a very high GI and is terrible for blood sugar and removing wholewheat would take tonnes of B vitamins out of my diet I’m stuck for what to eat if I remove gluten. Am I over thinking it?

Good luck with the move

Charlie-Farley profile image
Charlie-Farley in reply toHashiboy

oh heck - no idea but if you are worried about glucose spikes etc have you heard of the glucose goddess? I saw a brilliant interview on YouTube on diary of a CEO - all about managing glucose. I supplement B vitamins and mostly cook from scratch only GF bread and very occasionally GF pasta (Sainsbury's own). Don’t use a great deal if pre-made stuff.

I guess you can only try if you feel inclined to do so. After seeing interview (glucose goddess) talking about using foods rich in soluble fibre to dampen down the glucose spike I decided to use inulin before a meal to dampen the spike - it’s a soluble fibre. 😉. Don’t seem to get the drop I used to experience- once we have moved I will be trying to develop fibre/veg rich starters to incorporate into diet. Can’t now, kitchen is halfway packed and we are running down the freezer 🤣. Timing us everything 😊👍

Hashiboy profile image
Hashiboy in reply toCharlie-Farley

Hi  Charlie-Farley yes I listened to her book and did continuous blood sugar monitoring as part on the Zoe thing. Turns out I’m in the top 80% of the population for blood sugar control. Good news for me it means I don’t get abig blood sugar spike from things like rice, pasta, seeded bread or potato so long as I add a little fat. So since posting I’ve been following Zoe more closely. They say Barley, bulgur and freekah and wholewheat pasta is good for me so for now gluten free is on pause.

Charlie-Farley profile image
Charlie-Farley in reply toHashiboy

Oooo that is really interesting….. would love to know how things progress. I ate some chocolate the other day with hubby and we were both fast asleep half an hour later - hmmmmm 😬

Hashiboy profile image
Hashiboy in reply toCharlie-Farley

Charlie-Farley life definitely too short to give up chocolate

Charlie-Farley profile image
Charlie-Farley in reply toHashiboy

Soo true😂

SlowDragon profile image
SlowDragonAdministrator

Was last 10mcg T3 Approx 8-12 hours before test

Last dose levothyroxine 24 hours before test

1) Always need to take exactly same dose T3 every day

2) Ft4 is still extremely low …..try increasing to 50mcg daily

Which brand is your 25mcg levothyroxine

Which brand is T3

When were vitamin D, folate, B12 and ferritin last tested

Are you on strictly gluten free and/or dairy free diet

Hashiboy profile image
Hashiboy in reply toSlowDragon

thanks for the advice SlowDragon yes, dose’s of T3 and T4 was 14 hours before testing. Vitamin levels all good but last test was a while back so I’ll retest. I’ll also sort out a dosing schedule that’s even each day and talk to my endo about upping T4 to 50mcg. I know I should try the gluten free approach but never felt I could manage it. Really appreciate the good advice.

SlowDragon profile image
SlowDragonAdministrator in reply toHashiboy

Last dose levothyroxine should be 24 hours before

Day before test split T3 into 3 smaller doses spread through the day with last dose 8-12 hours before test

Hashiboy profile image
Hashiboy in reply toSlowDragon

will do

DippyDame profile image
DippyDame

How much T3 were you taking before adding T4?

How did you feel?

T3 needs to be taken in an adequate and constant dose

Alternating T3 doses will be upsetting your system

I'd suggest you return to a steady dose of T3-only for 6/8 weeks then test 12 hours after last dose, close to 9am and at least an hour away from any food or drinks.

However bear in mind that T3 lowers TSH and FT4...

so, on T3-only , symptoms are the important guide

Yes overmedication can cause the converse effect where overmedication feels like undermedication....this is why symptoms are important clues.

Have you optimised vit D, vitB12 folate and ferritin to support thyroid health?

I need high dose T3-only to function and have had to learn to listen to my body...it will tell you if something is wrong

It sounds as if your endo is grasping at straws rather than knowledge!

Good luck!

Fluffysheep profile image
Fluffysheep in reply toDippyDame

Just want to ask a question here specifically regarding fatigue as being a potenetial sign of overmedication.

I presume this would only be a sign if it was a change of symptom? For example, I've felt exhausted all the way through my journey, from 25mcg levo all the way through to 150mcg levo (in fact I was a zombie on levo, but that's a different story!).

I then added in T3 (low and slow), which helped a little - I went from zombie to just full on tired with some exhaustion sometimes but not all the time. And that's pretty much where I've stayed!

I've ended up lowering the levo until I got rid of it completely, whilst upping the T3, and am now on 60mcg T3 a day split into 3 doses (25mcg, 25mcg and 10mcg). The one thing that has stayed constant is the tiredness, so I've also assumed that doesn't mean I'm overmedicated as it isn't something that's suddenly changed.

Just wanted to double check on my logic here!

I have no other symptoms of overmedication by the way.

Lovecake profile image
Lovecake in reply toFluffysheep

Hi, I suggest you copy and paste your reply into a new post. You’ll get more answers specific to you ☺️🧁

DippyDame profile image
DippyDame in reply toFluffysheep

If it's a continuing symptom then you need to consider other symptoms regarding overmedication.

I know from experience that fatigue can be difficult to resolve.

You've followed much the same path as I did except that I now take a supraphysiological dose of T3 ( said to be over 60mcg which freaks most medics out because they don't fully understand why some of us need such a large dose)

For overmedication check/ signs....

Resting heart rate....high/ fast suggests over medication

Hand tremors ....extend arms straight out in front of you, palms down and thumbs barely touching. Place a sheet of paper over the backs of your hands....notice any movement indicating tremor.....tremor suggests overmedication.

Anxiety...similarly

Heat intolerance .....ditto

Mood swings

Poor sleep.

Have you optimised vit D, vitB12, folate and ferritin to support thyroid health?

Fatigue may be a symptom of low nutrients.

I take myT3 in a single dose at bedtime....the full dose helps to overcome any cellular resistance meaning that it acts as a " battering ram" against the cells and that force enables some of the dose to push through into the nuclei of the cells where it becomes active. It attaches to the T3 receptors and then can fulfill it's function

Any remaining hormone stays in the serum where it is inactive, is eventually metabolised and excreted.

Maybe try taking 2x 30mcg doses and see if that helps.

I slowly combined into a single dose which I found most effective.

It's all in my bio if that helps.

Unfortunately on higher doses of T3 trial and error is the only way to find the therapeutic dose because blood tests are no longer helpful.

It sounds as if you are on the right track....fatigue may reduce overtime as the T3 very slowly reaches all the cells. After several years I still notice the occasional improvement.

I'm sure you already know T3 is not a quick fix, nor is it the panacea of all ills!!

These articles might help ( if you haven't already come across them!)

thyroidpatients.ca/2019/08/...

healthrising.org/blog/2019/...

We're all here to help so just ask

Good luck!

PS Apologies Hashiboy we've diverted from your post

Fluffysheep profile image
Fluffysheep in reply toDippyDame

Thank you.

I was taking 2 x 30mcg doses up until a couple of weeks ago. I just wanted to try splitting further to see if it helped (it hasn't).

I'll be looking to up the dose soon, just wanted to explore the split dose thing first. I skim read the Recovering With T3 by Paul Robinson book, but my husband is currently ploughing through it in detail on my behalf!

My other vits are all optimised.

I don't have any of the other symptoms.

Will have a read of your bio.

Thanks again for your reply. 🙂

DippyDame profile image
DippyDame in reply toFluffysheep

If you have none of the other symptoms I mentioned then 60mcg is possibly enough

You need to give any new dosing protocol about 6 weeks to settle into the system.

Problem is that we are all different and there is no one-suits-all treatment.

Worth trying a single dose....but it's not Paul's method.

Splitting was a retrograde step for me.

I followed the late Dr John Lowe's approach...some detail in the second link I gave you

Hashiboy profile image
Hashiboy in reply toDippyDame

thanks for posting that, it’s very helpful

shaws profile image
shawsAdministrator in reply toHashiboy

I, too, have recovered my health by following Dr John Lowe's advice (who was an Adviser to TUK before his death - due to an accident).

Dr Lowe was a scientist and an expert in the use of T3. His interest on thyroid hormones was due to some of his family members taking their own lives as they couldn't resolve their clinical symptoms or were undiagnosed.

Hashiboy profile image
Hashiboy in reply toDippyDame

DippyDame hi there, I've just posted an update on how I'm doing but I'm coming around to your idea to stack T3 in less doses (maybe morning and late afternoon to start).

DippyDame profile image
DippyDame in reply toHashiboy

You won't know if it helps unless you try!

Keep us posted

Good luck!

andyjs2 profile image
andyjs2 in reply toFluffysheep

Hi, if not already doing so, it’s important to also test cortisol as it and FT3 must both be in good shape to feel your best. I went from T4 to NDT to T4/T3 to straight T3 with added cortisol before I truly felt better. And I found that during my journey my cortisol would go down the more of any meds I took, but more so when having T4 in the mix.

I ultimately started taking Adrenal Cortex (cortisol supplement) and it helped immensely!

Here is an analogy I read somewhere: Imagine your thyroid med is the gas pedal in your car and your cortisol is the gas in your tank. You have to BOTH push down on the gas pedal (add thyroid meds) AND have gas in the tank (cortisol) for your car to move. If either are low, you’re not going anywhere!

So get your saliva cortisol tested to see how much gas you have in the tank to go along with the thyroid meds you’re taking.

I ended up on all T3 since I just never felt any better with T4 in the mix. I will say that I am a poor T4 to T3 converter which undoubtedly played a role in this.

Hope this helps!

Fluffysheep profile image
Fluffysheep in reply toandyjs2

Thank you. I've just been considering that actually, as my husband got to that chapter in Paul Robinson's book, so we've been discussing it.

I also have the faulty DIO2 gene, as I took that test earlier this year, so that probably explains why T4 did nothing for me, and it was only on adding some T3 in that I started to get some relief. Problem is, I've never really improved on that little bit of relief, so it's just finding out why. A cortisol test does seem like the next step before upping my T3 dose again.

Hashiboy profile image
Hashiboy in reply toandyjs2

really useful thanks andyjs2

McPammy profile image
McPammy

over medication causes me to feel extremely tired and dizzy at times even heavy. It’s about getting the balance just right for you. Has this all happened since the introduction of t4 medication? Was you feeling ok prior? were feeling ok prior if so it would seem T4 addition is pushing you over medicated. I feel dreadful if my TSH is suppressed.

RoseStar profile image
RoseStar in reply toMcPammy

do you get muscle aches too? I’ve just had to reduce my Levo dose by 12.5mcg a day because bloods showed over-medicated (and I felt it so was happy to reduce) but now I’m experiencing severe muscle aches and fatigue 🥺

Hashiboy profile image
Hashiboy in reply toRoseStar

No muscle pains at present  RoseStar but I get evil leg muscle pains when under medicated

RoseStar profile image
RoseStar in reply toHashiboy

this is what makes me think I’m now under medicated but it was such a small reduction!!

Hashiboy profile image
Hashiboy in reply toRoseStar

it’s so hard to tell sometimes, I’ve also had leg ache when over medicated 🤷‍♂️

RoseStar profile image
RoseStar in reply toHashiboy

I guess I have to wait it out until my next bloods in a month 🙃

McPammy profile image
McPammy in reply toRoseStar

I get muscle aches when over medicated and struggle to walk with ease. Have you changed your brand recently or timings of taking your levo. I split my levo dose half at noon half at 5pm. I found that helped me.

Hashiboy profile image
Hashiboy in reply toMcPammy

hi McPammy thanks for the info. Adding T4 has helped in some ways but the fatigue is definitely less intense but more long lasting than on T3 only. I guess I’ll have to experiment with a consistent daily dose and see how I get on

Hashiboy profile image
Hashiboy in reply toMcPammy

HI McPammy I just posted a new thread following up on how I’m doing. Can't work out if I'm over, under or have the dosing time intervals wrong. But definitely prefer adding in the T4.

connyankee profile image
connyankee

A good reference guide, which taught me a lot about this insidious disease, is written by Paul Robinson, The Thyroid Patient's Manual. It's probably in your local library. You may get some answers there. When I eat Gluten, my memory really fades and I'm more tired. Currently, I'm back to sleeping 12 hours/day because it's homemade Pesto season for me. Also, to note. When you're Hypo, your stomach acid is lower than normal, so digesting your food takes the energy from your body. You can add a supplement: HCL Betaine/Gentian Bitters. Try 1/2 cap first to see how you react. You should get a good belch when you're using them. Take them when you eat a heavy protein meal. You can work your way up to 2 caps, but always check with your Doc first before taking them. Best of luck. I used to be a competitive tennis player and had to give up the sport due to fatigue and sensitivity to heat.

Hashiboy profile image
Hashiboy in reply toconnyankee

thanks connyankee I have his books, I guess I should actually read them 🤔 I’ll check out the betaine - I bought some ages ago after reading Isabelle Wentz but never used it. Really interesting how gluten affects your memory, mine is terrible.

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