Difficulty swallowing-to tell or not to tell? - Thyroid UK

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Difficulty swallowing-to tell or not to tell?

jib70
jib70

At present I am in limbo. Had multinodular goitre for 20 odd years but always told my tests are "within range" (sound familiar?) so no treatment. Recent scan a few weeks ago GP said shows thyroid 'growing downwards', I'm supposing that means substernal now.

On long waiting list to see an endo of my choice recommended here but am having more problems with swallowing lately. Smaller pills/capsules go down, but just can't swallow my multivitamin, 2 glasses of water and it still retches back up. Same with peeled chewed apples etc. I always have meals with liquid, gravy/sauces to help swallowing but still have lots of problems with my throat so careful what I eat.

Hope for experiences from others here on whether it is worth telling GP about this or should I just sit and wait for eventual endo appt anyway? Been on waiting list for an appt. for 3 months now! Any help gladly received, thanks. ps - do have other thyroid symptoms but voicing them makes me sound like a hypochondriac:. pps just sent off another Medichecks test today.

24 Replies
shaws
shawsAdministrator

I think quite a few people have problems with swallowing tablets. If we do, it can be problematic especially if it seems to stick in throat which can be scary to say the least.

You will see it is a clinical symptom of hypo and I am sure you may tick of a few others on the following link:-

thyroiduk.org.uk/tuk/about_...

I am assuming you have not been diagnosed as your results are 'in range'. Do you have a print-out of your most recent results, with the ranges, that you can post for comments or wait till you get Medichecks results.

Unfortunately for us patients, most doctors are unaware of any clinical symptoms: they can either think we're 'anxious' or any other statement and are apt to prescribe another medication for a symptom rather than testing FT4 and FT3 to ensure they are optimal.

Post your medichecks results when you get them on a fresh post and members will respond.

jib70
jib70 in reply to shaws

Thank you for replying Shaws. So it is just one of the numerous general symptoms that many have? I should have realised that.

Tablets are no good at all it has to be smaller and smaller capsules. Just fed up with being cautious with food as coughing back food is not nice.

I'll post my test results when I get them, thanks.

shaws
shawsAdministrator in reply to jib70

Get referred to an ENT specialist to have your throat checked just to ensure everything is fine. Choking or difficulty swallowing can be quite scary and should be investigated.

SlowDragon
SlowDragonAdministrator

These Blue Horizon results in older post show you are hypothyroid and Hashimoto's

healthunlocked.com/thyroidu....

Has B12 and vitamin D been and retested since then?

Multivitamins are not usually recommended on here as too little of what we do need plus most contain iodine which is not recommended for any Hashimoto's patients

drknews.com/iodine-and-hash...

Getting all vitamin levels optimal may help TSH rise so that you can get Levothyroxine.

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

Are you supplementing a good quality daily vitamin B complex ? One with folate in not folic acid

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

Are you on strictly gluten free diet? If not you might want to consider trying it

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

jib70
jib70 in reply to SlowDragon

Hi SlowDragon. I took last private tests to GP early August primarily for my thyroid results but GP picked up on low VitB told me I needed injections but first must have NHS tests done to double check.

Saw another GP for the NHS results and informed my VitB was 250 and low range would be below 200 so prescribed the 1mg B12 pills. I've also been taking the B12 spray to help. I take no other supplements.

Just in case it skewed results I haven't had either for 5 days before new private bloods, not sure if pills and spray affect tests though.

I have been gluten free for several weeks now.

Hoping I can get sorted when I eventually get an endo appointment.

If you're of advanced years there's more of a risk of aspiration pneumonia :-( My GP, an ENT specialist, wasn't concerned about my swallowing difficulties. I couldn't even get a large new tablet prescribed at half the dose, and antibiotics can be a real problem.

jib70
jib70 in reply to SmallBlueThing

Yeah, I am of advanced years SmallBlueThing. I do tend to blame all my many symptoms on my age as well, but hoping with the proper treatment I shall feel better.

Get your goitre checked out properly. Mine was cancerous even though all tests were normal although the majority of lumps are benign. As it grows it may be putting pressure on your pipes. Mine felt like I was being strangled.

jib70
jib70 in reply to annnsandell

Oh that strangled sensation, I know what you mean. Can't bear any clothing near my throat. I sometimes get awful wheezing which seems to just come from my throat too but only when I'm laying down in bed so wonder if it's from pressure?

When walking up a very steep hill in 2014 suddenly I couldn't breathe. I had no other symptoms prior to this. My GP sent me for an xray and thought that it could be a thyroid problem as my enlarged goiter on the thyroid had moved my trachea out of place.

I was also given a FNA with no definate answers. No more help was given this was in the UK. By the way I still struggled to swallow and breathe after 10 months I moved to France to live. Within 2 months of moving to France my French GP sent me for an ultrasound and then straight to hospital. The surgeon removed my thyroid, repaired my trachea and found a 4cm lump which was 1/5th cancerous. Good old NHS

jib70
jib70 in reply to Bunnyjean

Thanks for replying Bunnyjean. Sorry to hear of the problems you had, thank goodness you eventually got it dealt with. How are you keeping now?

I also have some breathing problems now which I thought may be due to the goitre, but they gave me an inhaler for that ! I'm sure the wheezing I sometimes get is from pressure especially as I only get it when lying down in bed night and morning.

I'm being stupid not telling the GP about all the symptoms but I dread sounding like an anxious hypochondriac.

Making an appointment to see GP next week so wish me courage. j x

Bunnyjean
Bunnyjean in reply to jib70

Good Luck with that let me know how you do?

Bunnyjean
Bunnyjean in reply to jib70

The noise that you are hearing is stupor something is not right try your GP again.

jib70
jib70 in reply to Bunnyjean

Thanks for that Bunnyjean. You encouraged me to check out this site - endocrineweb.com/conditions... - and my wheezing is possibly a 'stridor' ?

I have purchased a couple of books about the thyroid and read links posted here but I missed that bit. I'm only beginning to connect the dots.... Thanks j x

Bunnyjean
Bunnyjean in reply to jib70

Stridor yes stupor no, sorry for the mistake . It's just me wrong spelling.

Rmichelle
Rmichelle in reply to jib70

Lol they gave me a inhaler too....last year they said it was asthma!!! Does it help? Hope you gwt it sorted, very interested in your journey.😊

Interested Bunnyjean, what drugs are you prescribed in France with no thyroid?

Rmichelle
Rmichelle in reply to Bunnyjean

Im so glad you are ok now, its disgusting you were left , surely if it had been a problem in the very beginning thwy should have removed it asap...i have similar probs, my endo has referred me to ENT as i have choking and swallowing probs and breathless on occassions, 2 ultrasounds-nodules and xhronic damage due to graves & hashis, endo says ultrasound says no obsteu tion on thw windpipe...umm i not so sure, so was yours seen on ultrasound or xray, mri?im not thinking i have cancer but maybe a substernal goitre? Just interested to find out what xray should give a definite answer. Do not want to be fobbed off by the everfailing nhs!!

So reinforcing what Bunnyjean has said, get a referral to a consultant surgeon. Mine does breast cancer and thyroid at Carlisle, lovely man.

Only Levo, or course the same as the UK. I self medicate now since joining this site.

Hi there i have this too swallowing and choking, my endo has referred me to ENT-mention this to your endo today? Was your substernal goitre diagnosed with a ultrasound? I have probs breathing at times too, i have had 2 ultrasounds and consultant says i do have nodules and xhronic damage bur reckons nothing touching my windpipe? Im very sceptical on this, i want a mri as i think the nhs tell you anything to shut you up. Hope your endo appt today was encouraging.😊

Bunnyjean
Bunnyjean in reply to Rmichelle

When I was in the UK I first had an Xray then an ultrasound it was picked up on both. Still nothing was done to help me though. Within a couple of weeks going to see the GP in France I was referred to a consultant thyroid surgeon who booked me in to have my TT straight away. France has a lot wrong with it but the health system is fantastic. When I was in hospital all of the nurses were French there seems to be no shortage there.

In Southampton back in 2014 the ENT was outsourced as was some surgery. These companies had to bid for the service to be provided by themselves. When I had my gallbladder removed back in 2010 the fourth floor of the NHS hosptial was taken by Care UK a private firm, my NHS GP sent me there ( The Royal South Hants) Southampton

My sister who was a nurse told me that the idea to outsource was during a labour government so it was down to them.

Rmichelle
Rmichelle in reply to Bunnyjean

Thankyou bunnyjean, i just find it disgraceful that they done jot!! Why do they do this to people-im happy you are sorted...i have just had a letter from my endo asking for my to visit him again in december, what joy!!😊 take care and wrap up warm.xx

Bunnyjean
Bunnyjean in reply to Rmichelle

Good luck with your appointment.

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