Reducing T3 are these results normal? - Thyroid UK

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Reducing T3 are these results normal?

Rhub4rb profile image
11 Replies

I have been taking T3 since the beginning of the year and was doing great but my insulin sensitivity went downhill badly and I realised it coincided with being on T3 (which other people have experienced) . Due to other dietary and health changes I was hopeful I could get my thyroid to function again and go 'natural' as previous test results have always indicated I was still producing T4 (and was 'overmedicated') but I felt rubbish on levo (20 years of still showing major hypo symptoms) and the plan was (and still is) to get my thyroid functioning again and with other dietary and health changes I hoped this would be possible.

When I was taking 25mcg T3 twice a day my TSH was 0.001 and my T4 was 0 (both to be expected) I felt great other than the crazy blood sugars (I'm T1 diabetic) which were making my life hell.

So around 5 weeks ago I added iodine (high dose), selenium, tyrosine, magnesium and vit d to my routine and am now taking 12.5mcg T3 twice a day. I am experiencing no hypo symptoms and still able to get up early in the morning. I feel great AND my insulin sensitivity has returned and I feel just the same as when taking the 25mcg T3 but finally back in control of my blood sugars.. All going well!

Last night my doctor called really concerned as my blood results are back and my TSH is 22 and my T4 is 6 (she did not test my T3 as they consider it a waste of money (and I hadn't pushed I was more interested in seeing if I had started producing T4 again. She was desperate to put me back on levo as these results would obviously indicate I'm severely hypo.

I have agreed to do another round of tests in a month but next time they will check my T3 levels.

My thinking is that if I'm supplementing with T3 then it would be normal for my T4 level to be lower as I don't need it to convert to T3. However I'm wondering why my TSH is so elevated. Could this be because my thyroid is starting to work again and is taking time for the T4 levels to rise or something? Ultimately I want to reduce my T3 further (though as my insulin sensitivity is better if I can't I don't mind continuing with the T3).

Could the elevated TSH be to do with taking too much iodine etc? Or is it normal when your thyroid starts functioning again. The first week of doing this my thyroid seemed to be causing pain when I swallowed and I was aware of what felt like a lump in my throat when swallowing but this went away and I actually didn't mind as it seemed to indicate my thyroid was doing somethjng again.

Thanks in advance!

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11 Replies
SeasideSusie profile image
SeasideSusieRemembering

Rhub4rb

So around 5 weeks ago I added iodine (high dose),

Did you test first? We should only take iodine if tested and found to be deficient, and then under the guidance of an experienced practioner. Unless we have a restricted diet we get plenty of iodine in food here in the UK, it's present in milk, yogurt, white fish, scampi, etc.

my blood results are back and my TSH is 22

Could the elevated TSH be to do with taking too much iodine etc?

Iodine used to be used to treat overactive thyroid and can make hypothyroidism worse. So yes, the iodine could have caused this. How much have you been taking? The daily recommended amount is 150mcg and it's not hard to get that amount daily from food.

Rhub4rb profile image
Rhub4rb in reply to SeasideSusie

Sorry I only just saw your reply.. Please see my reply below as I saw that first.. Im not sold on the recommended dose of iodine as the Japanese have way more than that in their food (or used to) and certainly used to be one of the healthiest nations..

SlowDragon profile image
SlowDragonAdministrator

A full replacement dose of T3 is somewhere between 40mcg -60mcg per day for most people

When you were taking 2 x 25mcg T3 you were taking a full replacement dose

Now you have halved that.....but not added any Levothyroxine.

Taking almost any dose of T3 tends to suppress TSH ...regardless of wether you are on high enough replacement dose ....or not

Obviously you are now very under treated

So you need to either add Levothyroxine or increase T3

As you are type one diabetic are you on strictly gluten free diet?

Presumably you have Hashimoto's too?

Obviously essential to regularly test vitamin D, folate, ferritin and B12

Rhub4rb profile image
Rhub4rb in reply to SlowDragon

I am having ferreting and B12 tested jn a month along with thyroid..

No I was technically never diagnosed with anything.. My dad and his mum had hashimotos and a full thyroidectomies so I had put my symptoms years ago down to thyroid. I had been suffering extreme fatigue for 10 years when my TSH became slightly elevated I convinced my doc to put me on levo and then a week later I ended up in hospital and my TSH was 15 and my levo increased to 200 (I have since learned that some docs refuse to test thyroid when people are very ill (I had multiple organs seemingly shutting down which was never explained) as the thyroid does very strange things when ill.. After going on higher dose of T4 gained 4 stone and my hair went very thin..

Now I am staring at a diagnosis of bi polar and I believe all these years I've been blaming my physical ailments for my mental health I think it might actually be the other way round.. I find it almost impossible to remember how I felt yesterday and keeping a mood diary was an eye opener.. Whilst this is only a recent thing I think I've been going to the docs when I'd been having a bad week and unable to get out of bed and not realising thst in fact some days I just need to accept I'm shot and the next week I might be up at 6 feeling great again..

Previously if I had stopped taking even levo for a couple of days my voice would 'crack' and go deep and I could hardly think.. I don't believe I'm hypo.. I've actually lost weight even though I've had a few weeks off gym due to my membership fee doubling (I'm not paying £110 a month!! lol so found another one) not feeling ill or anything.. And my hair isn't falling out!

I'm so confused..

SlowDragon profile image
SlowDragonAdministrator in reply to Rhub4rb

Hashimoto's can appear as symptoms similar to bipolar

drknews.com/when-hashimotos...

holtorfmed.com/mental-illne...

thyroidpharmacist.com/artic...

hypothyroidmom.com/miss-dia...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

Adding Levothyroxine back in (at small dose initially) might give more stability

As you have Hashimoto's are you on strictly gluten free diet?

Rhub4rb profile image
Rhub4rb in reply to SlowDragon

I have been strict on gluten free for around 3 months now..

I'm feeling better than I have for YEARS.. not constipated, my hair isn't falling out etc etc.. The only symptom I do have is dry skin.. I have days when I find it hard to get up but when I was on just T4 I struggled with my weight and needed at least 13 hours of sleep.. And my mood disorder whatever it is and (whatever the reason) was certainly not better when I was taking 200mcg levo (and still having hypo symptoms) or on T3..

Is it possible to be hypo and not have symptoms?

SlowDragon profile image
SlowDragonAdministrator in reply to Rhub4rb

Have you ever tried levothyroxine plus small dose of T3

Or did you go from only levothyroxine to only T3 ?

Good to hear gluten free diet has been such a positive step

Rhub4rb profile image
Rhub4rb in reply to SlowDragon

No I haven't.. My T4 levels pre going on levo were always fine and when I went on levo they went sky high (before going on T3 they were 36) so I figured I was producing it and my problem was with the conversion or uptake of T3..

When i started on the T3 my plan was to increase my dose until I felt symptoms of being over medicated and as I increased my dose and not experiencing any symptoms I thought that the problem must definitely be the uptake (thouhh I wasnt feeling unwell there was definitely something amis) and when I went to see Thyroid endo at Kings I was taking 8 x 25mcg a day. He explained that my autonomoc neuropathy was making my body incapable of showing the usual symptoms like palpitations etc and recommended I reduce my dose to 2 x 25mcg a day as I was in danger of suddenly it all hitting at once and having a heart attack. So I did immediately and I then felt 'well'. But my blood sugars were crazy. I'm a complicated case as you can see lol.

Interestingly one symptom of autonomic neuropathy is a significant drop in blood pressure on standing which has in the past make me pass out but I just took my bp and it's 125/80 and on standing did not drop (as it has done for about 10 years)!

Whilst hashimotos can be mistaken for bi polar surely this must also happen the other way round. I was convinced my problems were due to thyroid and basically forced this diagnosis on the doctors who kept telling me it wasn't my thyroid. I once talked myself onto the kidney transplant list and whilst my kidney function was severely impaired my diabetes consultant persuaded me this was something I could have in future but as I'd got my blood sugars more under control (pump and cgm) I should stay stable for a while. When I asked why, if I didn't need it, they had put me on the list waiting for a kidney he said "because you are very persuasive". I think I have consistently blamed my thyroid for the bad days whereas in fact I do have something like bi polar (I've been referred up the chain and still waiting for a diagnosis). My thouhht processes are definitely not normal (which I've always known but have coping strategies) and my good days can turn bad on a pin OR I continue feeling happy til I am absolutely flying.. I get accused of being on drugs and FEEL as thouhh I'm on drugs lol wish that was every day!

Every test I've ever had done would suggest I don't have thyroid issues.. Prior to going on T4 I didn't have the typical symptoms of being underactive it was the fatigue and family history that had me convinced it was thyroid related, the hair loss and weight gain happened after starting on T4..

SlowDragon profile image
SlowDragonAdministrator in reply to Rhub4rb

Well the vast majority of patients who take some T3 take it alongside Levothyroxine

It's rare to only take T3

If originally on 200mcg Levothyroxine. Typically dose of Levothyroxine is reduced by 25mcg to 175mcg and small split dose of T3 added.

T3

Usually 2 x 5mcg. Bloods retested after 6-8 weeks and frequently then increased to 3 x 5mcg or 10mcg plus 2 x 5mcg (assuming 20mcg tablets. Similar protocol for 25mcg tablets )

I would suggest you are now hypothyroid as no longer taking full replacement dose of T3 as you have reduced to just 25mcg per day ....

So perhaps time to try adding in 50mcg Levothyroxine. Retest in 6-8 weeks. Increase Levothyroxine dose in 25mcg steps upwards retesting 6-8 weeks after each increase. You should see symptoms improve as FT4 rises back into range

Rhub4rb profile image
Rhub4rb in reply to SlowDragon

I don't have any symptoms though.. I feel better than I can remember EVER feeling.. Now I know the bad days or weeks are going to improve and its not the beginning of the end I can mentally cope..

This is the first time I've ever had a blood test come back showing that I might be hypo but they didn't check my T3 which they are going to do when they recheck my bloods..

The symptoms of mood etc have always been there and when I recognized that manic doesn't always = happy something clicked and I've been able to connect the dots.. I think levo was really bad for me.. If you can produce it naturally why not do so.. My T4 is low but I'm supplementing with T3 so my body doesn't need to make as much is what I'm hoping is happening anyway..

Obviously this isn't a case that happens often so noone can confirm if I'm right but I feel so good (and actually better mentally) that I'm not ready to throw in the towel just yet..

Thank you for your advice I have taken it on board and I will get back to you after I've had the full panel in December. Then, providing things are still going well, I will attempt to reduce my T3 furter and see if my T4 increases. In all honesty if I hadn't had these tests done and my doc hadn't called me really concerned I would be reducing it now but I promised to leave it as it is..

My mum says I did have one other symptom before starting T4 and that was thinning hair but anemia (which I have always had or been borderline) causes both fatigue and hair loss.. So who knows..

I will let you know how it goes.. But with TSH so high and t4 so low I would definitely be in a bad place if the T3 wasn't filling the gap.

Rhub4rb profile image
Rhub4rb in reply to SlowDragon

Just thought this might interest you.. It has certainly eased my concerns about the TSH levels and I've seen other posts from people saying their TSH was over 100 when they first started iodine but they felt fine and it reduced on its own!

youtu.be/pJlai7T0Q_g

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