Over range t4 but still feel hypo. What to try next?

[J675]

Hi you lovely, helpful lot, would it be possible to have some advice on my latest test results received today? I've been on 150mcg Aristo levo per day for the past 7 weeks taken at 2am, except for the couple of days before my test. Last dose 25.5 hours beforehand. No biotin or (prescription) iron for seven days. Nowt to eat or drink before blood draw. I'm gluten and dairy free.

CRP HS 0.43 mg/L (Range: 0 - 5)

Ferritin 64.80 ug/L (Range: 13 - 150)

Folate - Serum 19.8 ug/L (Range: > 3.89)

Vitamin B12 - Active >150 pmol/L (Range: 37.5 - 188)

Vitamin D 94.60 nmol/L (Range: 50 - 200)

TSH X 0.01 mU/L (Range: 0.27 - 4.2)

Free T3 5.90 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 27.500 pmol/L (Range: 12 - 22)

Thyroglobulin Antibodies X 134.000 IU/mL (Range: < 115)

Thyroid Peroxidase Antibodies X 64.90 IU/mL (Range: < 34)

My vit D and Ferritin have improved, but could be better. I already knew that I had the autoimmune disease. Although my t4 is quite over range, I still feel that I have hypo symptoms and my mood especially is really low. I've messed around with my t4 meds loads in the couple of months before this more stable dose as I was on 100 then 125 and then back to 100 again with 25 oral solution, which I had to stop after two weeks due to a bad reaction to the preservative. This messing about hasn't helped (understatement!) but I've been so desperate to feel well again and to be able to function. Not to mention keeping my job.

Where do I go now? Should I try reducing the levo down to 125 for a couple of months or is it time to introduce some t3 or even try ndt (with the corresponding reduction or elimination in levo)? TIA.

[greygoose]

It's not T4 (levo) that gets rid of hypo symptoms, no matter how high the level. T4 is basically a storage hormone, that doesn't do much until it is converted to T3, the active hormone.

You are not converting very well, which is why you need your FT4 is so high - 155.0% - just to get an FT3 of 75.68% through the range. And could very well be that that's not high enough for you.

Where you go now is in persuit of some T3 to add to a reduced dose of levo. You can't get it from a GP, so that means either seeing an endo, and trying to persuade him to prescribe it, or sourcing and buying your own.

[J675 in reply to greygoose]

Thanks for the reply. You've kinda confirmed what I suspected (after spending a long time reading up on here). While I decide on my best course of action, will there be any harm or adverse effects with maintaining such a high t4 level in order to keep my t3 up?

[Hidden in reply to J675]

How are you feeling on your current dose J675?

[J675 in reply to Hidden]

Bloody awful. Aching, emotional, sore eyes, constipated, insomniac, etc etc and really, really miserable. I'm not a lot of fun at parties these days 🤣

[Hidden in reply to J675]

I’m sorry you’re feeling so rubbish!

I can relate. My bloods are similar, except my T3 is well below yours. I’ve had a lot of weakness in my limbs as well. Horrid. I’m thinking along the same lines now Re T3 as my T4 over range as yours and I’ve felt shocking since it went above 20. In fact, I became very unwell when my first set of bloods showed this spike over range in T4. I’m usually around 18. If I increase dose of Levo it seems my body doesn’t cope with it.

Those on here much more knowledgeable than me re dosing advice I feel very new to this and generally confused, but just to say I sympathise and feel exactly the same way Re getting well and holding on to the job. (I’m currently on long term absence now due to this. My whole quality of life is affected, not just work. Awful, isn’t it?)

So hard to know what to do- I understand the jumping around thing Re dose. I also don’t know what to do- over range T4, but feel hypo. And recent drop to 100mcg Levo- 3 weeks in- and thinking should I go back to 112.5 mcg per day. I won’t though as I know I need to stick and review bloods but it feels like a very very long wait when still feeling poorly.

The quest for a trail of T3 seems a good option. My thoughts, you’re feeling like **** so what’s to lose?

I’m a poor converter and I’m awaiting results from the DIO2 gene test to see if that could be some of what’s going on and will be looking for a trial myself.

I do hope you are ok and are successful with getting T3. 🦋

[greygoose in reply to J675]

That is a question that no-one can really answer, because the research has never really been done. But, possibly yes. I wouldn't recommend it. We just don't know enough about long-term effects to say it is entirely safe.

[Yeswithasmile]

Hi J675

From experience and I’d agree that you probably need some t3 but my body would feel awful with a t4 that high.

I have recently tried dropping t3 and raising t4 and knew within a couple of weeks that it was too much as all my hypo symptoms were full on. I dropped it and am feeling improved. Not brilliant obviously but definitely improved. So whilst t4 is meant to be the storage hormone, for me, I see it as important as t3.

T4 seems to motivate and give me energy too. We are all different I guess.

[McPammy]

If my T4 was that high, which it has been, I’d feel awful. Have you tried to lower your T4 Levothyroxine so you are in range. It looks too high to me and no matter how high it goes you probably won’t convert to T3 any better. I’d get your T4 in range first by reducing slightly and see how you feel then. The hypo symptoms will be over medicated on Levothyroxine. Over or under medicated can give you the same symptoms.

[radd]

J675,

You said in your first post when dosing 75mcg Levo that thyroid hormone labs were low but the ratio of T4 to T3 looked ok, so your hypo symptoms were more likely due to under dosing, and then brand changes.

T3 4.79 (3.1-6.8) & T4 18.3 (12-22)

These previous results 3 months ago show FT4 63% through range & FT3 at 45.68% leaving room for a small raise in Levo. I assume this was dosing 100mcg Levo so you have since raised up to 125mcg and then another raise to 150mcg Levo.

You have not only missed your sweet spot but have taken FT4 levels over-range which can make thyroid meds start working negatively against us, instigating further hypo symptoms. Thyroid antibodies are also over range.

It can be easy to assume we are still under medicated when suffering hypo symptoms because symptoms can lag behind good biochemistry for months & months. Cortisol levels may become low through years of being under-medicated, and panic attacks & anxiety are common when inadequate adrenal reserves can’t keep pace with the increase in metabolism caused by Levothyroxine.

Based on all sets of results you do not need to introduce any T3 meds at this stage because finding your sweet spot and optimising iron/nutrients will improve your body's usage and conversion of the correct Levo dose.

If I was you I would reduce to alternate daily 100mcg & 125mcg T4 and test in 6 - 8 weeks which will give time for iron & nutrients to optimise. You can then reassess if meds are right or you do actually require 125mcg daily. You might also benefit from some sort of adrenal support.

Why are you taking meds at 2am?

Are you gluten free?

[J675 in reply to radd]

Thanks for your advice, and everyone else's. I'm going to take it on board and drop my levo dose to 100/125 a day and then retest. I'm also going to try very hard to resist the temptation to mess around with my dosage while doing this, but I shouldn't really need to as I'm being kept on the one brand that I know I don't react badly to. But the desire to feel OK and feel like me again is soooo strong, it's really hard not to keep on trying new things in a desperate attempt to find my panacea.

I take my levo at stupid o'clock as I have pretty bad acid reflux and take antacids before bed. I used to be up between 4 and 5 before I was so unwell, and 2am was the best time to fit in with other meds and eating. Now I can't be arsed getting up that early anymore, but the 2am habit has stuck.

[radd in reply to J675]

J675,

Some people need antacids but other hypos are prescribed them erroneously because low thyroid hormones can result in low stomach acid that gives similar symptoms to excess stomach acid, ie heartburn, reflux, indigestion, etc.

The reasons are clear when there is too much acid but to have similar symptoms when there is too little is due directly to the lack of stomach acid that acts as one of the signals to close the sphincter between the oesophagus and stomach. Low thyroid hormone also slows everything up moving through the whole GI tract (hence constipation).

We need gastric acid to break down proteins and trigger the small intestine to release pancreatic enzymes (to further digest foods) and the gallbladder to release bile (to emulsify fats). The treatment for low gastric acid is to replace it with supplements but these can not be taken with PPi’s as work in the total opposite way.

Food for thought 😊

[J675 in reply to radd]

I totally agree that ppi's are the devil's work and very over prescribed, especially for long term use. I hate using them and only take them as a last resort so I don't wake up coughing and choking every few minutes. I also get a lot of vagus irrigation palpitations when my reflux is bad. Unfortunately, my pet bulimia has reappeared since I've been feeling so lousy and I need the ppi's to help reduce the inflammation.

[Yeswithasmile in reply to J675]

I just wanted to say that we all feel your pain. The change dose and wait thing is very hard. All you want is to feel a bit better and the temptation is strong to chop and change but you have to remember that doing this just lengthens the time it takes to feel better. As many have mentioned, you miss ‘your’ dose and end up having to revert back a bit. If you do as Radd has recommended then you will have a better idea of when to try adding in some t3 if you need to. I’m sorry you’re struggling so much and I wish you lots of luck that you feel a bit better very soon.