Levo side effects

[Carriebaby]

so was on ndt for ages but felt it wasn’t working as well and swapped for my usual 100 levothyroxine but for over the past week I have been having a tight feeling in my throat. I stopped taking my thyroid meds and it subsided but it’s taking days to go away. Is this due to having too much T4 as I was previously on one and a quarter NDT daily

[Jaydee1507 Administrator]

You really need to get some full thyroid testing - TSH, FT4 & FT3 to see whats going on. In a previous post you said you were on 125mcg Levo, also NDT. It's best not to guess what is happening at blood level with just TSH or FT4 results from your GP.

Stopping thyroid hormones is not the answer. Reducing or increasing is what you need to do otherwise a few weeks down the line you will be feeling awful.

What supplements are you taking?

What are your latest blood results for ferritin, folte, B12 & D3?

Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private postal testing early Monday or Tuesday morning.

[Carriebaby in reply to Jaydee1507]

I wasn’t taking both I was previously on NDT as I said and came off it as I didn’t feel it was working anymore ! I had previously been on 100 Levo a day before changing to NDT so just went back on the 100 a day Levo and my T4 was just slightly higher than my surgeries range. They only text TSH and T4 and won’t do any other tests

[Jaydee1507 Administrator in reply to Carriebaby]

I realise you weren't taking both, just you were previously on 125mcg Levo.

Did you get full blood tests done before you stopped the NDT?

Do you leave a gap of 24 hours after taking Levo and having your blood test? You do need an FT3 test and if your GP won't do it then I have given you the details for private testing.

Your current symptoms may be from a low FT3.

What supplements are you taking?

What are your latest blood results for ferritin, folte, B12 & D3?

[Carriebaby in reply to Jaydee1507]

I only had my thyroid tested and hadn’t taken any thyroid meds that day ! My GP won’t test anything other than TSH and T4 my T4 was just 0.5 over the high range of 22 and my THS was Lowe than the lowest range siting at 0.1 the range in my surgery is THS 0.27 - 4.2 The T4 range is up to 22 and mine was 22.5 where can I go privately to get tested for everything you mentioned

[Jaydee1507 Administrator in reply to Carriebaby]

None of that tells you about the active hormone T3.

Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. . thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private postal testing early Monday or Tuesday morning.

[Carriebaby in reply to Jaydee1507]

thanks I’ll look into it

[SlowDragon Administrator]

You need to get full thyroid and vitamin testing done 6-8 weeks after being on constant unchanging dose and brand of levothyroxine or NDT

1 and 1/4 grains of NDT was probably low dose

How long were you on that….what were your results

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

[Carriebaby in reply to SlowDragon]

I was on NDT for a long time and when I tried to up the dose I would get the gitters so obviously my dose was enough. I didn’t take my Levo the morning before my bloods were drawn and the results were that the top range of T4 was 0.5 above the top range of 22 my TSH was 0.1 which is way under the lowest range which is 0.27

[SlowDragon Administrator in reply to Carriebaby]

On NDT your TSH was presumably extremely low or suppressed

Were you splitting NDT as 2 doses

It can take months and months for TSH to respond to changes

How long after changing to 100mcg levothyroxine was test done

Just testing TSH and Ft4 is completely inadequate

You need to retest including Ft3 and vitamins …..but will need to wait at least 6-8 weeks after getting back on constant unchanging dose

Perhaps try 75mcg daily initially

You could test vitamin levels now

[Carriebaby in reply to SlowDragon]

I’ve booked a private test for all thyroid and vitamin & minerals too so go on Monday ! I’m just a bit unsure why I have this tight feeling in my throat

[SlowDragon Administrator in reply to Carriebaby]

The sudden reduction in T3 likely the cause

Not a lot of point testing thyroid unless on constant unchanging dose of thyroid hormones for minimum 6-8 weeks

[greygoose]

I wasn’t taking both I was previously on NDT as I said and came off it as I didn’t feel it was working anymore !

NDT can't 'stop working', it's a hormone, not aspirin. You probably just needed a slight increase in dose.

Feeling better when you stop any form of thyroid hormone replacement doesn't prove that you didn't need it or that it was causing side effects, or anything else. It just proves that you've stopped taking your thyroid hormone. For some unknown reason, that just makes people feel better for a while. But, it doesn't last. Sooner or later the hypo symptoms will creep back in and you will have to start taking something again.

[Carriebaby in reply to greygoose]

I started taking Levo again 100mg a day but my bloods came back on the higher side so I had to stop taking for a few days as I have a tightening in my throat

[waveylines]

Awww it is difficult some time to know what to do. I think it's a shame you stopped the NDT. The dose increase you made on the NDT was probably too much. How much did u put it up?I'm on NDT and often I only need a tweak up or down.... usually by quarter of a I grain tablet....and for me that little tweak makes a massive difference. Which NDT were u on? How long ago did you change back to levo.

And I have to agree re optomising the vitamins & iron. Made a massive difference to me. I seemed to utilise my NDT much better.

Hang in there. Glad uve got a blood test organised.

[FancyPants54 in reply to waveylines]

I'm finding I'm better off if I increase my NDT by 1/8th of a 1 grain tablet now. Going in quarters is too much.

[waveylines in reply to FancyPants54]

How do you cut an eighth?

[FancyPants54 in reply to waveylines]

I have some 5mg pills and they just break in half with a bit of thumb nail pressure.

[waveylines in reply to FancyPants54]

Ahhh thought u must have a lower dose tablet. 🤣 I use a pill cutter to cut mine in quarters but guess the 5 mcg are very small.

[FancyPants54 in reply to waveylines]

Yes, too small for a pill cutter, but they break easily. I'm currently on 2 & 1/4 grain for another week so I don't have to break them for the time being. But I will when I next increase and add in another 1/8th. I am finding that I can cope with the increase better this way.

[waveylines in reply to FancyPants54]

Oh well done Fancy pants for finding a way forward. I know how much you have struggled with increasing your thyroid meds. 👍👍👍

[Carriebaby in reply to waveylines]

hi I was on thyroid S and taking between 1 grain and 1.5 grain but when I tried to up it I had a heavy feeling in my chest. I came off it and onto my levothyroxine at the same does I originally took which was 100 ml a day ! I then started to get a tightness in my throat and now haven’t taken any for 3 days ! I had blood test done yesterday privately for the full spectrum thyroid and vitamins & minerals to help me understand what’s going on

[Ruthi]

Free T3 is really the only meaningful figure once you have taken NDT or T3 for a while because it tends to suppress TSH. And presumably you were taking NDT because the T3 in it was making you feel better. That may well have been because you don’t convert T4 to T3 well, so measuring T4 tells us nothing much. I suspect you might have needed more NDT rather than reverting to Levo. No matter what you really need to test T3 now.

My GP does test FT3 for me, so it is possible on the NHS. After 20 years on NDT my TSH is 0 and he understands that.