Can't find proper thyroid medication: Hi all, I... - Thyroid UK

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Can't find proper thyroid medication

Sam_Tx profile image
21 Replies

Hi all,

I've tried almost all thyroid medications under the sun, NDT, T4 only (tirosint, synthroid, euthyrox), T4 + T3, T3 only, NDT + T4. And no matter what I still have lingering symptoms despite all my levels being optimal ( TSH, free T4 and free T3). My vitamins are all optimal as well (vtiamin D, iron, ferratin, b12, selenium). I've also had my adrenals tested and the levels are normal.

when taking t4 only or t4 + t3 I feel the most "normal" but I have TONS of hair shedding, and it doesn't stop. I also have terrible bags under my eyes although I sleep fine, for the most part and I have fatigue.

when taking NDT - almost immediately my hair stops falling out and my eye bags disappear. But due to the higher T3 in NDT I experience higher resting heart rate, anxiety, headache and neckache.. I also feel more energetic but it's not constant, it's like a roller coaster.

At the moment I am taking 75mcg euthyrox and 7.5 mcg liothyronine and I'm 10 weeks pregnant. I know now is not the time to mess with my thyroid medication but I can't help but wonder if anyone else has experienced this and if they found something that worked for them!

Any input is welcome!

Thank you, Samantha

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21 Replies
greygoose profile image
greygoose

no matter what I still have lingering symptoms despite all my levels being optimal ( TSH, free T4 and free T3).

But if you still have symptoms, they're not optimal. Who says they're optimal? Only you can know. Optimal is not a number on a lab sheet, it's how you feel.

Sam_Tx profile image
Sam_Tx in reply togreygoose

thank you, yes, i guess i'm still searching for my optimal .

greygoose profile image
greygoose in reply toSam_Tx

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

Congratulations on your pregnancy

You need to keep close eye on levels. Has dose been increased

Some people use NDT plus levothyroxine

Something to consider trying after your baby is born

Sam_Tx profile image
Sam_Tx in reply toSlowDragon

thank you!

and I did try NDT with T4 added and I felt pretty terrible, worst of both words 😔 (60mg NDT and 25 mcg T4).

Jaydee1507 profile image
Jaydee1507Administrator

Do you have actual results you can share with us? Someone might be able to throw some light on an issue somewhere.

How long have you given each hormone as a trial?

Have you tried a strictly gluten and possibly also dairy free diet if you have positive antibodies?

Sam_Tx profile image
Sam_Tx in reply toJaydee1507

hi, yes I've done gluten free and haven't seen improvement besides some lessening in fatigue (i was gluten free about 9 months). I have not done dairy free but have taken food sensitivity tests and they never mentioned a dairy issue.

I've mainly been on T4 only or T4+T3 (usually 50-75mcg T4 and 5-10mcg T3) and while taking this combination my TSH was anywhere from 0.7-2.5, T4 free was around 1.06-1.40, and my T3 free was either 2.9 or 3.0. I would always do my blood tests in the AM, fasted and without taking my medication before the test.

I did try to increase my T4 from 75mcg to 88mcg when I was T4 only and this caused me to have hyperthyroid symptoms that got worse over the course of the first 3 weeks so I ended up going back down to 75mcg. (not sure why but I'm very sensitive to medication)

While on NDT I worked my way up to 90mg (NP thyroid)over the course of 7 months, towards the end of me taking this dose i had 2 hyperthyroid events where my heart rate when very high for 2-3 hours, I felt like i was having a panic attack, it was horrible. that's what lead me to get off NDT.

90mg NP thyroid TSH 0.4, T4free 1.0, T3 free 3.2

I did do blood tests at 60mg NP thyroid as well: TSH 2.30, T4free 0.8, T3free 3.0

Jaydee1507 profile image
Jaydee1507Administrator in reply toSam_Tx

When you quote blood results you do need to include the labs reference range. This is important as they vary between labs.

As your TSH has never been below range on a T3 containing hormone then you are likely under replaced. T3 always reduces TSH to almost nothing if not suppressed when people are fully replaced.

It won't help you keep switching types of hormone either. Better to pick one and tweak your dose over a long period of time.

What were the vitamin results?

Are you aware that you should have a dose increase in the early weeks of pregnancy? Speak to your care provider and get tested.

Litatamon profile image
Litatamon in reply toSam_Tx

With the NDT, it could simply be that your sweet spot is in between 60 & 90 mg.

Also, as someone else mentioned you could take to one brand of NDT than another.

Thyroid S is thought to be a slower release.

I take all my hormones in one go and have never had that timed crash that others speak of, that causes them to choose a split dose.

When I did try splitting my dose, just to see, it actually irritated me because I could feel my body craving another dose.

Hi Samantha,

I cannot give you an answer, but I lose more hair both when I´m over- and undermedicated.

My own experience is that "optimal" only means one thing, and that is symptom-free. It has very little to do with lab results and reference ranges, not to mention most doctors´ idea of optimal.

Many people say they have more stable energy levels on NDT than synthetic T3 as the hormones in NDT are mostly bound and not free, but for you it seems to be the other way around.

If you feel best on a synthetic T3+T4 combo, why not try to tweak both until you find the right dose for you? That can take months, but the advantage is that you can adjust them independently.

How do you take T3, in one or divided doses?

Sam_Tx profile image
Sam_Tx in reply to

thank you for the reply, I take 5mcg T3 in the morning with my T4 and then i take 1/2 a pill around 1:30 in the afternoon.

in reply toSam_Tx

So, is that half a 5 mcg pill? So a total of 7.5 mcg daily. To me, that sounds pretty low, especially if you are a poor converter. It may be that you need higher doses of T3.

SlowDragon profile image
SlowDragonAdministrator

I've mainly been on T4 only or T4+T3 (usually 50-75mcg T4 and 5-10mcg T3) and while taking this combination my TSH was anywhere from 0.7-2.5, T4 free was around 1.06-1.40, and my T3 free was either 2.9 or 3.0

Please add ranges

When T3 is added TSH is frequently suppressed

These look low doses

How much do you weigh

Was levothyroxine increased by 25mcg as soon as pregnancy confirmed

Many people on levothyroxine plus small doses of T3 need both Ft4 and Ft3 at least 60-70% through range

essential to maintain OPTIMAL vitamin levels too

Jellywobble profile image
Jellywobble

Hi Sorry I haven’t got an answer, but curious to know if your Gp prescribed you with NDT? I would like to try that to see if it would stop my hair shedding and increase my energy level. Im in the UK. Thanks

PixieElv profile image
PixieElv

hi Samantha

I have no answer for you, but I share you woes. I tried everything (T4, T3, T4 and T3, NDT, NDT and T3), and at first, it all works. Then my body stops absorbing the meds. Bloods are ‘optimal’ in range but as Grey Goose says, that doesn’t mean anything.

How do we get our bodies to accept the medication? And yes, I gluten, dairy and soy friend and vits are good 😊

Good luck with your pregnancy!

Hookie01 profile image
Hookie01

Can I ask how old you are?

waveylines profile image
waveylines

Hi Sam. Congratulations on your pregnancy. Fantastic news. You are right now is not the time to be switching but hope your health care pracfiiners is advising you on the chnasge in thyroid meds you will need re pregnancy.

Can I ask what NDT brand/s did you try? I ve been on NDT for years and you have to find the one that suits you. Some did not suit me. Erfa for example has a higher T3 content than Armour.

You didn't mention your folate level? Was this checked? Important Co factor.

And yes please pop the ranges on (usually in brackets) as they vary.

Please also be aware that the B12 assay is not totally reliable since in the UK they brought in multiple testing machinary. It over estimates B12 levels.

Sadly it took me several years to find my optimal dose which for me was greatly helped by B12 jabs, B complex with folate and being strictly GF. My thyroid had failed so I didn't have to deal with flare ups which sounds like you might have to do. That is more tricky.

Sending you all the best with your pregnancy.

Ajva profile image
Ajva

could have wrote the same post. I have been on everything, every combination above and I seem to have to luck. I am currently on NDT armour and added tirisont my problem is the same if I increase the NDT heart goes crazy etc and t3 goes over range. So I have tried upping the tirisont but that makes my RT3 over range and I feel awful. So at the moment I am over range on NDT with t3 and hearts all over the place. But if I go back down on normal 1 grain dose I feel like I am going to die of fatigue.

For now, as I have done the same as you for years messed around with different thyroid meds. But I am going to stick with low dose NDT with added t4. I am hoping once I get vitamins better etc I will have more energy.

Noelnoel profile image
Noelnoel in reply toAjva

Just to say, I get all angsty with a racing heart, coupled with ectopic beats. I hear it all at night when I stuff in my earplugs to drown out my husband’s snoring. Hearing my heart go crazy alerts me that it’s time for an Adrenavive increase. Within a day I’m calm again. Strange, but during the day when I’m preoccupied with day to day stuff I don’t notice it so much and although I resented have to wear ear plugs, they were actually a godsend in that they enable me to hear my heart beat, ectopics an’ all. This was a life-changing discovery into why I get jumpy and jittery and unable to sleep

I think lots of us are unaware we have adrenal problems. More’s the pity because these problems can make it difficult to tolerate thyroid replacement and not knowing why we don’t tolerate it well sends us down all sorts of rabbit holes looking for solutions. Many unnecessary mistakes are made and lots of time lost trying to find answers or thyroid replacement that “works”. I think they all work to a greater or lesser degree; it’s the conditions that are wrong, not necessarily the product. To my cost I was unaware my core nutrients were in a poor state. Addressing this also helped enormously

Ballethorse profile image
Ballethorse

Congratulations! Since it would be unwise to adjust your meds now I would suggest finding quality whole food supplements. Changing my vitamins to whole food supplements made a big difference. Dr Schulz Superfood was a game changer . I also take Norwegian Cod liver oil. And massive doses of kelp which eliminated nodules in my body. Vitamin D is the only synthetic vitamin I take. Dr Schulz Superfood gave me more energy. I certainly don’t have the energy that I used to but I am an abnormally high energy person. I’m 57 and very active, play basketball - run, walk, dance etc. I started on NP thyroid, then went only T-3. Now, I take 50mcg tirosint and 25mcg Liothyronine in separate doses. I had 5 children and I was diagnosed when my last was 12.

StitchFairy profile image
StitchFairy in reply toBallethorse

Are you in the US? I don't really understand the term wholefood supplements. Wouldn't it be better just to eat the whole foods themselves instead?

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