NDT side effects...sensation of swollen neck? - Thyroid UK

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NDT side effects...sensation of swollen neck?

Olsbird profile image
11 Replies

Hi all. I'm demented!! I've had a total side effect nightmare on every drug (t4 t3 NDT) at every dose level. I'm now on 1/4 tablet of NDT every other day. My thyroid symptoms are under control but my neck feels like it's swollen. It isn't and there's no lumps or anything untoward when touched. Is this an NDT side effect? My last bloods were t4 13.1, t3 4.8 and tsh 5.11. I don't have any other side effects other than my neck. Any thoughts welcome. Btw I've mentioned to 2 endos who felt my neck and weren't concerned. It's really uncomfortable!! Thx all

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Olsbird
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11 Replies
Silver_Fairy profile image
Silver_Fairy

Can you edit the post to put the ranges in please? Your TSH is high.

I recently had discomfort in my neck and I think it was because I was undermedicated.

Olsbird profile image
Olsbird in reply toSilver_Fairy

Hi silver fairy. Thanks. I don't have all the ranges. New surgery and useless. Do you mind me asking what kind of discomfort? Did you have a sensation it was swollen? When I was taking 1/2 tablet a day the sensation was even worse for me so I'm not really convinced it's a higher dose solution. Thx.

Silver_Fairy profile image
Silver_Fairy in reply toOlsbird

It felt like there was something pressing against my throat, just below my adams apple, enough to cause discomfort.

A quarter is very low though? Which one are you on? Could it be fillers?

Have you had the fab four tested? Vit D, B12, Folate and Ferritin?

Olsbird profile image
Olsbird in reply toSilver_Fairy

Yes I have that but also it feels like my whole neck is swollen, though particularly on the right. I've not had the Fab Four tested for a while but the last time they were ok and still had the side effects. Feel like I'm banging my head against a wall trying to resolve this. I never seem to not have problems. Whatever the dose and whatever the drug. I'm v fed up 😂 !! No one (i.e. The Drs) seem to have any ideas either why I have the issues. Grrrrr.

Olsbird profile image
Olsbird

Thx. Is that something you can pick up in any pharmacy over the counter?

Olsbird profile image
Olsbird

Thx.

Naomi8 profile image
Naomi8

I suffered from that swollen neck feeling when I was building up to the right dose of thyroxine when first diagnosed,many years ago.I am now doing dose raising with NDT after being on T3-only for 2 years,& I believe this swollen neck feeling indicates I am under-medicated & need a raise.I believe it is a hypothyroid symptom.

Olsbird profile image
Olsbird in reply toNaomi8

Thanks Naomi8. It's interesting (and a relief) that someone else has had the same reaction. I'm not really convinced for me it's an indicator of needing a higher dose as it was much worse when I was on a higher dose of NDT. It's actually better than it was on the lower dose. I don't remember this reaction to Levo - I did experience a stiffness in my neck but this feeling is different. I was starting to wonder if it was the t3 in NDT as I also had the sensation on t3 only. I'm sick of this!! 2 years now of side effects of one form or another and all the endos I've seen (4) don't really seem to have any ideas about all the reactions and why I'm seeming to not tolerate anything without issue. It's so frustrating. 😂

Naomi8 profile image
Naomi8

I've been struggling with symptoms & side-effects since 1997!I've had 2 mental breakdowns & years of fatigue.

Thyroxine gives me tachycardia episodes & ectopic beats on top of all the other downsides.

T3 for 2 years was my best for energy but I lost SO much hair & had my second breakdown.

(overwhelming anxiety & depression)the first one was after years on T4-only.

I gave up on endos when the last one cancelled my T3 & wanted me to go back to thyroxine,but onto a lower dose than I'd been on for years.

I know my next step is to give up gluten again & possibly all grains.

Thank heavens for Thyroid UK & Stop The Thyroid Madness.

Olsbird profile image
Olsbird in reply toNaomi8

Oh golly. I'm sorry -it sounds awful. The NHS are pressurising endos not to give t3 because if cost. Their ridiculous procurement practices are the cause. I hope you manage to find something eventually. And sorry to bang on about swollen mechs - I was starting to really fear I had some other dreadful illness.

Naomi8 profile image
Naomi8 in reply toOlsbird

I consider myself to be one of the lucky ones-some folk are bed-ridden or nearly bed-ridden & have other immune disorders which are more debilitating.I am also able to afford my own T3 & NDT,LDN & other supplements.

I have really good days,too!It has got me into practising meditation daily & yoga regularly.I am retired & able to get lots of rest,which is essential for me.I sleep well at night,too.

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