Bloods riddle: Anyone have ideas...5 years on... - Thyroid UK

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Bloods riddle

fostercraig profile image
27 Replies

Anyone have ideas...5 years on still adjusting and not making much progress. The addition of T3 two years ago got me out of the house and semi active but so many swings still and fuggy head.

Previous bloods were

Tsh 1.42, Ft3 4.5, Ft4 12. I was not great here meds dosage was 100mcgs t4 and 5,5,5 T3(spread out through day).

My Endo put me up to 125mcgs 5,5,5 T3. I felt worse in fact.

Bloods on this dose were Tsh 0.85 Ft3 4.2 Ft4 11.5

So I reduced my T4 to 112.5 (pill cutter) and T3 5,5,5,5 (extra 5)

I felt better than I did on 125, I don't have bloods as this is only a week after recording the last bloods above on the previous meds dosage.. I almost have bloods monthly so much fiddling.

Still suffer what I call Payback....If I exert myself one day I have to payback with a big low the next day or couple of days.

I am taking suppliments now suggest by forum. I think I have almost exhausted the combos of T3 and T4....Does this make any sense at all to anyone? Or even familiar?

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fostercraig
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27 Replies
greygoose profile image
greygoose

So I reduced my T4 to 112.5 (pill cutter) and T3 5,5,5,5 (extra 5)

Does this mean that you take 5 mcg T3 four times a day? If so, how do you manage to keep it away from food and your supplements?

Not possible to interpret your blood test results without the ranges. Sorry. :)

fostercraig profile image
fostercraig in reply togreygoose

My Endo says that T4 must be taken away from food as it binds to proteins and is not absorbed properly. T3 does not have this problem and should be dripped in to try and mimic the natural way. T3 has a very short 8 hour half life and needs topping up regularly, as opposed to T4 which takes days to metabolise.

greygoose profile image
greygoose in reply tofostercraig

Yes, I know, lots of people say that, but the results say the opposite. I think that's just a myth.

As for 'dripping in T3 to mimic the natural way', you can't really mimic the natural way. And, some people need large amounts in one go to saturate the receptors, or they can't get enough T3 into the cells.

T3 has a half life of 24 hours, not 8, but the T3 that gets into the cells stays there for about three days, so that really doesn't hold water, I'm afraid.

fostercraig profile image
fostercraig in reply togreygoose

Always open to other suggestions/views especially as 5 years down the line its still really affecting my life.

I can easily take morning T3 before breakfast and keep others a couple of hours from food. Give that a go absolutely.

Are you well now greygoose?

greygoose profile image
greygoose in reply tofostercraig

Possibly as well as I can expect to be given that I was undiagnosed for about 50 years, yes. :)

fostercraig profile image
fostercraig in reply togreygoose

How is that even possible, you poor thing.

greygoose profile image
greygoose in reply tofostercraig

It's possible because no doctor ever thought to test my thyroid. They preferred to blame me for being lazy, greedy and a liar, and prescribe antidepressants.

SilverAvocado profile image
SilverAvocado in reply tofostercraig

In terms of dosing, I would say do your own experiments, and see what suits you best. Obviously life is way easier if you can get away with taking it in one dose with your T4!

The way it worked for me is I started on 1 morning dose, and it wasn't until I'd increased my dose quite a bit that I noticed being more tired in the afternoon, so added an afternoon dose. I was fine on that until I'd increased quite a bit again, and I slowly noticed I was nearly always feeling terrible by bedtime, so I added another evening dose.

I've also changed the sizes and timings of each dose, too. I've always taken the larger dose in the morning, and the other two smaller, but I've shuffled exactly how big the difference is a number of times depending on symptoms.

I've been doing it that way for ages, and am now a lot better overall. I'm not thinking of trying to cut out the evening dose and see how I feel. At the moment my evening dose is pretty small, because in the past year or so I found I wasn't at my best energy levels until after the afternoon dose, so more and more I've moved the bulk of the dose earlier in the day.

Sorry this got very long, I just wanted to illustrate the juggling act and that there are no hard and fast rules for how to do it. If I were you I'd try having just the one dose for a few weeks, notice how you feel in the evenings and afternoon. And if you're more tired or symptom heavy later in the day split into a second dose and see how you go. Its possibly you do need the full 3 or 4, but you'll never know till you mess around with it.

in reply togreygoose

I like your way of explaining things, Greygoose!

I find this theory about needing to take all the T3 in one go to saturate cells interesting as doctors seem to always disagree on this subject...some recommend multi dosing (I've seen a few recommend taking it up to six times daily which for me would mean thinking about nothing else) and others say once a day is preferable provided you don't feel jittery.

greygoose profile image
greygoose in reply to

Well, it really does depend on the person. We're all different and all have different needs. It suits me best to take it all in one go - and certainly doesn't make me jittery. But, other people need to take it several times a day.

fostercraig profile image
fostercraig in reply togreygoose

Ranges

TSH 0.35-4.94 mlU/L

FT4 9.01 - 19.05 pmol/L

FT3 2.63-5.70 pmol/L

greygoose profile image
greygoose in reply tofostercraig

So, your FT3 is only a tad over mid-range. Most hypos need it higher than that.

fostercraig profile image
fostercraig in reply togreygoose

So more T3 as opposed to T4 which gives me aches Thighs Knees Shoulders over 100mcgs

greygoose profile image
greygoose in reply tofostercraig

No, it's the FT3 the priority.

SlowDragon profile image
SlowDragonAdministrator

You could try 10mcg T3 on waking, 5mcg at 3pm and 5mcg at 11pm (i.e. 8 hours apart)

Retesting thyroid and vitamins in 6-8 weeks on this new dose regime.

Do you take Levo at bedtime or morning?

Is it always the same brand?

fostercraig profile image
fostercraig in reply toSlowDragon

Yes always has been Actavis NorthStar from day 1 5 years ago

Levo actually taken at around 2.00am (58 year old bladder!)

fostercraig profile image
fostercraig in reply toSlowDragon

I am never sure of the bloods gold standard

Ranges on my bloods were

TSH 0.35-4.94 mlU/L

FT4 9.01 - 19.05 pmol/L

FT3 2.63-5.70 pmol/L

Is my FT3 not supposed to be towards the top of the range so at 4.2 when the range ends at 5.7 I am short no? ergo More t3 ?. TSH target should be under 1 I gather, which it is?

SlowDragon profile image
SlowDragonAdministrator in reply tofostercraig

How long before blood test was last dose of T3?

fostercraig profile image
fostercraig in reply toSlowDragon

10 hours

SlowDragon profile image
SlowDragonAdministrator

Are you on strictly gluten free diet

If not, it's next step

You won't know if you have hidden gluten problem unless you try it

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

restartmed.com/hashimotos-g...

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Plus all Thyroid patients benefit from avoiding all soya including soya lecithin

fostercraig profile image
fostercraig in reply toSlowDragon

Started Gluten free 3 weeks ago

SlowDragon profile image
SlowDragonAdministrator in reply tofostercraig

Noticed any improvements yet?

fostercraig profile image
fostercraig in reply toSlowDragon

No sadly 😒

SlowDragon profile image
SlowDragonAdministrator in reply tofostercraig

Have you had TPO and TG Thyroid antibodies tested in past?

They will need retesting after 3 months gluten free

fostercraig profile image
fostercraig in reply toSlowDragon

3 years ago I had a whole range of tests at the start of my Endo intervention. I would love to send them to you if possible on a PM. The majority mean nothing to me but probably would to you. And since then just the three bloods. Can you attach pdf's to PM's?

SlowDragon profile image
SlowDragonAdministrator in reply tofostercraig

I don't think so.

You can copy the content from Pdf and paste in a PM

SilverAvocado profile image
SilverAvocado

Fostercraig, my feeling once you've added some T3 is that when you're having an increase you'll usually want it in T3 rather than T4.

Your current freeT3 is about halfway through the range if I'm reading things correctly, ideally you want it near the top of the range, so you've got good evidence there for an increase.

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