Trouble swallowing and lump in throat - 5 weeks... - Thyroid UK

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Trouble swallowing and lump in throat - 5 weeks now

BeckieC profile image
35 Replies

Can anyone help? Has anyone had this and what helped? I really don't think it's anxiety. The gp tries to put everything down to anxiety. He won't test my levels for 12 weeks.

I had a bad reaction to Teva levo over Christmas and this started at the end of that. I've moved back to actavis and MP on 75mmg.

It's like I can swallow the first part, but I can't the second. Food gets stuck, water traps air, everything won't go down properly. I feel like I've a lump, but there's no lump. My voice is horse. My neck is a little restricted too, which means my breathing is a little laboured

I've an ENT referral, but that's May, which is way too long to live like this.

If anyone can offer me some options to try, that would be amazing. GP doesn't seem to think it's thyroid related, but it just seems too coincidental not to be.

Thank you all,

Beckie

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BeckieC profile image
BeckieC
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35 Replies
Marz profile image
Marz

Could you ring the Consultants secretary - explain the problem and ask for an earlier appointment ... a scan would be good too.

BeckieC profile image
BeckieC in reply to Marz

Thank you for replying. My GP sent an urgent referral, a 2 week one, but the hospital downgraded it. I spent the morning on Friday trying to get an earlier appt. No joy.

Marz profile image
Marz in reply to BeckieC

Are you able to ask for a Private Consultation ?

BeckieC profile image
BeckieC in reply to Marz

Unfortunately, I'm not in the position to, else I would have already.

Marz profile image
Marz in reply to BeckieC

Try ringing the Secretary and ask how much it would be - you may be surprised. Moving up the queue when very poorly sometimes needs a bit of bribery 😘

BeckieC profile image
BeckieC in reply to Marz

I tried on Friday. Apparently, the secretaries don't make appointments anymore. I had to book it online with my allocated urgency code. This is what they assessed me at.

I spent the whole morning trying to. Sort it out. No joy.

I'll try my GP again tomorrow. Maybe try to get an ultrasound while I'm waiting.

Marz profile image
Marz in reply to BeckieC

So frustrating for you ! I have been in Greece for 15 years ( now UK based ) and we could ring any consultant direct and make an appointment - usually very quick. They work late into the evening ! I had so much good and speedy care in cash strapped Greece. The Private sector is affordable.

Hope you soon have good care ...

Lora7again profile image
Lora7again in reply to Marz

This is the NHS Marz and this has been happening for years and if you cannot afford to pay you are left on long waiting lists. I am hoping our new PM will do something about this but I doubt he will make much of a change.

BeckieC profile image
BeckieC in reply to Lora7again

Thank you both.

The UK system is so very frustrating. I'm sure it'd be more cost effective for them if we could just self refer like in Greece.

Unfortunately, we have to convince the GP we need help first before anything can happen.

Our NHS is great, we're very lucky to have it, but the wait it very frustrating.

Tina_Maria profile image
Tina_Maria

You should ask your GP for an urgent referral for an ultrasound scan of your thyroid. This will clarify if there is an obstruction or if it is your thyroid. Thyroid enlargement can be a feature of an underactive thyroid. This needs to be investigated as soon as possible - ring the GP again and insist, especially as you seem to have real difficulties. Hope it does get sorted soon, good luck!

BeckieC profile image
BeckieC in reply to Tina_Maria

Thank you.

Lora7again profile image
Lora7again

Speak to the Consultant's secretary and tell her to let you know if there is a cancellation. This happens a lot and when I worked on clinics a lot of people would cancel their appointments because they were either scared or ill. We also had a lot of no shows which annoyed me because the appointment could have been used for someone else. If you are really struggling I would call an ambulance and then you will actually get some investigations much quicker. This would be a last resort but I did this when I couldn't breathe with a nasty chest infection and I did get the help I needed.

BeckieC profile image
BeckieC in reply to Lora7again

Thank you Lora. I'll see if I can do that. I'm self employed, so much more flexible with time than most.

I'll see the GP tomorrow and ask for an ultrasound in the meantime. Wish me luck. I feel my GP thinks I'm attention seeking.

Lora7again profile image
Lora7again in reply to BeckieC

I have a multinodular goitre and choke on my food all the time. It does not look obvious and doesn't need to be removed but it makes me cough sometimes. I had to take some large antibiotic capsules a few weeks ago and I choked on one. I had to stick my finger down my throat to dislodge it. In future if I have to take any tablets on prescription I will ask for the liquid. When I took Thyroid S I had no trouble swallowing them because they are tiny.

BeckieC profile image
BeckieC in reply to Lora7again

Oh that's horrid. I've been following my tablets with a piece of bread or banana and some liquid, it seems to help. If I don't, it feels they are just there.

So much for just taking a pill and you'll feel better, eh?

SlowDragon profile image
SlowDragonAdministrator in reply to BeckieC

Are you saying you take your levothyroxine with bread or banana?

Levothyroxine must ALWAYS be taken on its own on empty stomach and then nothing apart from water for at least an hour after

MichelleHarris profile image
MichelleHarris

This is a really common symptom that I keep reading. Its not anxiety!

It started with me when I got up to 75mcg Levo. Ive just had an ultrasound and they say Auto immune Thyroiditis. My Endo has just told me that lots of people cant tolerate Levo at the higher levels.

Ive gone onto NDT and it is subsiding. My lymphs were raised as well and they are going down.

I was undermedicated for months when first diagnosed. Either that or a reaction to a filler or Lactose in the tablet or the synthetic hormone itself, I’m not sure.

But why are these medics treating us like this ? Trying to make out its anything other than the medication they probably wouldnt take themselves!

Just seen a Rheum who tried to talk me out of taking my vits and minerals as I’m in normal range but BOTTOM of normal range.

Why does it bother them?

You do need to push for an ultrasound x

BeckieC profile image
BeckieC in reply to MichelleHarris

Thank you so much for replying, Michelle, sharing your experience and being reassuring.

It was when I moved up to 75mcg too, but had a seriously bad reaction to the TEVA brand, which is the only brand in 75 over here. Thanks to this forum, I asked to move to other brands and many of my symptoms improved, but not this throat thing... I'm still super tired too.

Maybe I should see if I can try just actavis brand as was ok on that before. I'm in the UK so I hear NDT is hard to get prescribed.

Can I ask, did you get a strange muscular thing going on with your tongue at the back, going into your throat? I think that's driving me mad the most, other than swallowing air.

I'm so pleased you're improving. That must be such a relief. Long may it continue. X

MichelleHarris profile image
MichelleHarris in reply to BeckieC

Yes I’m in the UK too. I’ve been buying NDT since Jan 1st. My throat is worse a couple hours after taking meds in morning and when looking down. I dont have the muscle thing but being hypo weakens your muscles. As I say its subsided a lot on NDT. I am so relieved.

I was better on Teva but suspect I have a lactose intolerance as since going Gluten and Lactose free, bowel complaints have massively improved. Teva is lactose free.

I think the synthetic hormone irritates the Thyroid. I think thats why nodules grow. But just my theory. Seems significant that a lot on here dont get this but a small percentage of us definitely do.

Can I ask if you had a baby or virus before being diagnosed? x

BeckieC profile image
BeckieC in reply to MichelleHarris

That's all so very interesting. If I don't get any joy sorting this out on levo, I'll look at getting some NDT. Only thing is that I'm a lifelong vegetarian, but then what's the ethics of a lot of these drugs, esp with gelatin capsules.

We all react to drugs differently, don't we? Funnily enough I've been lactose free for a while and now looking at gluten, but I love my carbs, so I have to be properly determined to stick to it.

Yes, I was diagnosed, finally, 3 years ago. I was exhausted after having my boy, almost 8 years ago and put it down to lone parenthood. I genuinely think the stress of all that brought it on.

X

MichelleHarris profile image
MichelleHarris in reply to BeckieC

I’m trying to connect you with @Linzr with same symptoms but this highlighting thing never works for me.

Can anyone else can highlight Linzr please? x

Lora7again profile image
Lora7again in reply to MichelleHarris

Which NDT are you taking?

MichelleHarris profile image
MichelleHarris in reply to Lora7again

Lora7again its ThyroGold but I’m not doing well on it Thyroid wise.

Its very weak as others have reported. The amount I am now taking is making it very expensive x

Lora7again profile image
Lora7again in reply to MichelleHarris

Have you tried any other NDT? Thyroid S suited me when I took it but it is not for everyone.

MichelleHarris profile image
MichelleHarris in reply to Lora7again

I have some to try next when these are gone x

Linzr profile image
Linzr in reply to MichelleHarris

Hi michelle ive just seen the post now. I cant believe how many of us are having these symptoms. Im 7 weeks off meds now and although it has subsided slightly it is still there. I know teva works for some people but i defo put my issues down to tge brand x

BeckieC profile image
BeckieC in reply to Linzr

Hi Linzr,

Thank you! You've been having the same thing after TEVA? Oh my goodness.

I'm pleased it's subsiding. That gives me hope. I'm 6 weeks off after a month of TEVA.

What have your gp done, if you don't mind me asking?

Linzr profile image
Linzr in reply to BeckieC

BeckieC

Ive sent you a message

Xx

birkie profile image
birkie

Hi beckieC

Same thing happened to me I found food would not go down even liquid had a hard time I had hyperthyroidism my thiyroid had gone toxic and I'm sure it was swollen but no goiter visible told my gp for 3 years I was suffering from hyper symptoms but he took no notice blamed the menupause 😠 upshot I went in to thyroid storm had TT May last year swollowing is much better now but sometimes I get the levo stuck and need loads of water to get them down weird.. persist with your gp because they don't always know everything and do make huge mistakes and miss diagnosis unfortunately 😠

BeckieC profile image
BeckieC in reply to birkie

Hi Birkie,

Thank you for your reply... It was similar here, I ended up having a mirena coil fitted, went on anti anxiety meds as I was all over the place. Finally, they found I was hyperthyroid. Its been a long journey.

Wow, I'm so sorry you've had to go through this too. Awful. Thank you for telling me to.

My gp surgery is horrendously understaffed. Lots of GPS have left and they seem to have trouble keeping them.

Such is out NHS at the moment. Let's hope it gets better.

MichelleHarris profile image
MichelleHarris in reply to BeckieC

I had the Mirena coil fitted and had a very bad reaction to it. I blame it for my Hashi’s. Do you know lots of American women suing company and also blame Mirena? x

BeckieC profile image
BeckieC in reply to MichelleHarris

Hi. No, I didn't know.

They are very hesitant to remove mine. I think over here lots of women use it to help with menopause.

I did ask when I was having candida problems.

If be worried that my periods would be super heavy if it were removed

Lora7again profile image
Lora7again in reply to BeckieC

Read this thread you will see my experience with the Mirena Coil

healthunlocked.com/thyroidu...

BeckieC profile image
BeckieC

Hi All. Thank you for your support. I have an ENT appt on Monday morning, thankfully. Gp has asked for new bloods done, but has only asked for electrolytes and creatine ¯\(°_o)/¯

SlowDragon profile image
SlowDragonAdministrator

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

As a vegetarian presumably you have always taken B12 and regularly had iron levels tested?

If not, low vitamin levels likely causing big problems

Thyroid hormones need optimal vitamin levels

Vitamin D at least around 80nmol and around 100nmol may be better

Folate at least over ten

Ferritin at least half way through range

B12 at least over 500

All very often too low when hypothyroid.

Low B12 symptoms

b12deficiency.info/signs-an...

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

NICE guidelines

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

Post re how to push for dose increase in levothyroxine

healthunlocked.com/thyroidu....

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