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Weird throat symptoms

Elsa1509 profile image
10 Replies

Hi Everyone

I just wondered if anyone has any thoughts on my throat symptoms. I'm on no meds at all but have autoimmune thyroid disease (posted several times here before). I now have persistent symptoms of feeling like I have a flap of skin over the front of my trachea (very disconcerting), intermittent stabbing pains (right side of trachea) with associated jaw and ear pain and increasing hoarseness.

I have a "large irregular nodule" on the right (identified by US in June 2015). Also smaller nodules "bi-focal".

I have been to the doctor twice about this in the last year but they just say to see an ENT. The symptoms are getting much worse and I feel very uncomfortable in my throat. It looks a bit bulky round the trachea area. I am going to push for another US but do you think I am right to do this? Could these symptoms be related to a nodule(s).

Thankyou so much for any suggestions or comments in advance!

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Elsa1509 profile image
Elsa1509
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10 Replies
shaws profile image
shawsAdministrator

You should be on thyroid hormones if you have an Autoimmune Thyroid Disease. I bet your doctor will state that your TSH hasn't yet reached a level for you to be prescribed. Are you in the UK. If so, email louise.roberts@thyroiduk.org.uk for a copy of Dr Toft's Pulse online article.

Highlight the part where it says if we have antibodies we have to be given levothyroxine to 'nip things in the bud'. Also say you've had advice from the NHS Choices for help/advice Thyroiduk.org.uk

Elsa1509 profile image
Elsa1509 in reply toshaws

Thanks very much Shaws. My TG antibodies were 1,208 iu/ml and TPO 248 iu/ml when last tested and I also had elevated serum thyroglobulin ?! . I literally swing horribly between over and active thyroid (which keeps my weight very stable!) as can lose pounds when hyper, but now losing chunks of hair 😕 every time I wash it. I will make a GP appt today and try and be a bit more forceful. As usual the treatment is appalling and I was offered anti-depressants last month ! Needless to say I didn't take them . The GP is being supportive but in the wrong way ! Right now I want to rip my throat out as it feels so 'squashed' and horrible! The GP looks at me like I'm bonkers when I say this!

Thanks so much once again.

shaws profile image
shawsAdministrator in reply toElsa1509

They understand nothing at all about why and what the thyroid gland does, so are very unknowledgeable altogether.

It looks like your FT3 is low and I like how they try to reassure us by giving us a prescription for the 'symptom' but don't look at the overall reason why we have that symptom and that we should have none if on the right hormone, the right dose. They have been instructed that the TSH alone should drive their decision but it is from the pituitary gland. They rarely look at the overall thyroid hormone picture and taking into consideration the clinical symptoms.

If the Associations go along blindly and because many patients appear to do well on levothyroxine ignore those who cannot and do not improve or feel worse.

Your antibodies are high and going gluten-free can help reduce the attack on your gland. That's why sometimes you feel hyper and other times hypo.

She should also check B12, Vit D, iron, ferritin and folate. Deficiencies can also cause problems.

Elsa1509 profile image
Elsa1509 in reply toshaws

Thank you Shaws. My FT3 has been below range and mostly low in range. I have permanent fibromyalgia symptoms, fall asleep a time the drop of a hat (except when I am hyper then I am restless, anxious and nauseous). l have a GP appt this afternoon so have got my boxing gloves on to fight the fight! It is a different GP so fingers crossed.....

I'll re-post any significant outcome.

Thanks so much once again.

Two questions -

Why are you not taking any medications at all? (What dose of Levothyroxine was prescribed )

Why haven't you seen an ENT Specialist yet?

I have Hashimoto's Autoimmune Thyroiditis and Hypothyroidism. I am also under ENT Consultant because of my throat conditions.

X🐥

Elsa1509 profile image
Elsa1509 in reply toMary-intussuception

Hi Mary-many thanks for your reply. I'm not on meds as my levels have never been bad enough (except in 1996 when TSH went to triple figures after the birth of my daughter). Trouble is I was experiencing horrific hyper symptoms and couldn't stop shaking and sweating. By the time I got referred my levels had stabilised. Since then TSH had never been over 2.

l will rebook in with ENT but I just know I probably need another thyroid US so don't want to waste my very limited private health care in a potentially wasted appointment.

Can I ask if your ENT has helped you?

Mary-intussuception profile image
Mary-intussuception in reply toElsa1509

Hi Elsa.

Short answer is Yes. ENT did help. I thought your GP wanted to refer you on NHS, sorry. Didn't realise you might have to see ENT private. It's a difficult one I suppose, only you can decide.

I would have thought your GP should refer you to NHS ENT though.

Some of our symptoms are similar, but not all.

It was before I was diagnosed Hashi's and Hypo (although I'd had previous Hypothyroid Blood results that I didn't know about). So around 2009 - 2010.

I had the intermittent stabbing pains like someone was pulling a hot thin needle through my throat. I had pain when singing (was in choir) .Sometimes hoarse voice. The ENT did nasendoscope and said I think you have a small hernia. Diagnosis - Laryngopharyngeal Reflux and acid damage to the Arytenoids. Larynx was OK. Treated with 60mg Zoton Fastab lansoprazole for 8 weeks. Singing again!

It started to become troublesome again and couldn't sing as well after tablets stopped and 15mg generic capsules presribed by GP.

I had to fight to keep tabs and on 30mg Zoton daily now.

Ended up back in ENT before tablets issue resolved and Barium Swallow revealed the posterior Cricopharyngeus Prominence and small sliding hiatus hernia.

Recent urgent referal was because throat closing together when sleeping (collapsing) after two nights with very little sleep. I think this was following recent chronic sinus infection and Thyroid being attacked (due to antibodies increasing to fight jnfection). As I also had Hypothyroid symptoms - extra hair in brush , tired etc.

Anyway ENT chap on Tuesday had a look with horrible long mirror after strapping my tongue down and wants another Barium Swallow as he's thinking Pharyngeal Pouch (hope not). More xrays - my poor old Thyroid !!!

However as I mentioned in pm he is the first doc to listen and respond when I mentioned that I'd learned C5 vertebrae in line with Cricopharyngeus and Thyroid all in same area and my C- spine compromised in particular C5 / C6 bad with space loss and Osteophytes. He then told me the spurs were protruding into the throat!

I didn't know that there are so many different body parts in the throat. And numerous conditions. Learning from what I know I have so far. Must be lots more I don't know of as I'm not medically qualified!

Hope , whatever scans/tests you have, and whichever specialist you see that you will find out what's going on with your throat and get proper , appropriate corrective treatment.

I'll let you know any new findings with mine and further diagnosis.

X

Mary

🐥

Elsa1509 profile image
Elsa1509 in reply toMary-intussuception

Hi Mary

My referral was fast tracked on the NHS! I am so lucky where we live on the south coast as we have an amazing new hospital 10 mins drive where I have been referred. Your posts are so interesting as I didn't think so much could be wrong with a throat!. I too love singing but struggling a bit with aching and a degree of hoarseness when I push the singing. Also when I lost my job 5 years ago after 6 months of victimisation by one person I completely lost my voice for about 4 weeks. The GP ordered me to take sick leave! I know it is my weak spot. I think I have become fixated that it is a thyroid problem as coincidentally it is the same side as my nodule. It would be fascinating if it is related to my Cervical vertebrae (can't remember which numbers on mine but I think my chirpractor has mentioned C3 and C4? I can't afford him at the moment but will ask when I next see him.

I do hope you also get to the bottom of your throat problems and it would be great to hear your outcome if you're ok with sharing that! X

SlowDragon profile image
SlowDragonAdministrator

As you have Hashimoto's have you tried gluten free diet? Very many of us find it really helps reduce symptoms. It may also slowly lower antibodies

thyroidpharmacist.com/artic...

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

Also look at healing gut with bone broth and probiotics can improve gut bacteria

thyroidpharmacist.com/artic...

carolinasthyroidinstitute.c...

Elsa1509 profile image
Elsa1509 in reply toSlowDragon

Hi SlowDragon. Thanks so much, and yes I am gluten free and my folate, B12 and Vit D is very good. I realise I did have gluten on my hols recently and returned with bad stomach symptoms and bad joint pain (especially in my wrists). I have been tested to be gluten intolerant by a vega machine but numerous celiac tests from GP have proved negative. When my ferritin dropped to 3 they were convinced I was celiac! I will certainly read those links you have provided. Thank you.

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