Thyroid Issue Problem

[thelewisgang]

oh heck, where do I begin? Apologies for long post

I started with a cough several months ago which just wouldn't go. I finally went to my GP in August about this but also because I noticed a swelling in my neck. I was sent for a chest x-ray which returned clear and an ultrasound was arranged for early September. I was contacted the following day to inform me the scan showed acute inflammation in the thyroid gland (I have in the past, 1987 & 1995 had goiters removed). I was told I would be referred to the endocrinology department for further investigation. This department decided they would not see me but requested my doctor arranged repeat blood tests every few weeks. My TSH levels have been ok (last was 2.08) but the ESR results have returned elevated the last 3 times. I am due for my next blood tests on Monday. The last ESR returned as 55 mm/hr.

I contacted my doctor a few weeks ago because I had episodes where I felt I was choking and also a tight feeling around the base of my neck as if someone had their hands around it. No trouble swallowing although I feel like something is sometimes stuck in my throat. He decided to contact the hospital marking his request as urgent but again the endocrinology department wouldn't see me and referred my case to the the ENT. As I hadn't heard about an appointment within the 2 week window I rang the appointments who told me the triage team had downgraded it to a routine appointment! My doctor then tried again with another urgent request but I was told at the end of last week it had been downgraded again! I know we are in awful times at the moment but I just cannot wait many months to be seen to find out what the problem is. The swellings are now on both sides of my neck. I cannot hold a conversation even for just a few minutes as talking starts me coughing. Hopefully the image I am putting below will work & you can see my predicament.

I have spoken to 111 for advice but was told, as my GP also said, they cannot override the hospital's decision. What on earth am I supposed to do? I am finding it frightening at times & living on my own (apart from the dog) is a worry when I can't get my breath.

https://ibb.co/bvm58ZC

[Buenchico]

Try seeking the assistance of the Patient Advice and Liaison Service at the relevant hospital.

[AuntPollyGrey]

Ask your GP to refer you to a private consultant. You can have an initial consultation for about £150 and any subsequent treatment can usually be done by the NHS

[thelewisgang]

Buenchico
I have spoken to them this afternoon and they said although I can make a complaint, it will get me nowhere as the hospital has the final decision & they won't change their decision

[AuntPollyGrey]

Then go private

[Sqad]

That photograph is of a sweeling in your thyroid gland .
The scan would Indicate that it was not malignant and the ESR of55 is no big deal.
It looks as though we are not dealing with cancer and from that point of view is not urgent OR at the moment an emergency.
The symptoms that you described are worrying indicating pressure on the trachea.........again no ideal at the moment.
You have 3 options:
Wait for yourENT APPT
See someone privately.
Wait until breathing becomes difficult and the go to A&E.

[thelewisgang]

AuntPollyGrey
not sure when you last had a private consultation but I had one several years ago for a hand problem & the cost was £350. I am going to go down that route but I am retired and only have my state pension to live on

[Sqad]

Try not to worry, you will not suffocate.

[thelewisgang]

thank you Sqad. I will try not to worry. Would pressure on the trachea be the reason why when I talk I cannot stop coughing? I can go for some time without coughing if I don't talk!
How is inflammation in the thyroid gland sorted? I know (from speaking to my GP) it would possibly be beneficial if I took NSAID's but sadly I cannot take them since having a stomach bleed several years ago.

[Sqad]

Yes,as the swelling gets larger (may take months or more likely years) there will be increased pressure on your trachea and voice box, making you cough.
I assume that you are still taking thyroxine which is Important.
Try not to worry, nothing will happen to you and wait for your ENT appt on the NHS.

[thelewisgang]

thank you for your reassurances Sqad. Yes, I take 50mcg of thyroxine once a day

[AuntPollyGrey]

// AuntPollyGrey
not sure when you last had a private consultation //

About 6 months ago. it was around the £150 mark with follow-up by private physio 3 x £45.We always go private.

[diddlydo]

APG - you're very fortunate indeed to be able to go private. Most of us can't afford that sort of money especially when we're supposed to have an NHS service "from cradle to grave".

[AuntPollyGrey]

We pay our NI contributions like anyone else. Then on top we pay for Bupa. The fact we can pay means those less fortunate are bumped up the waiting list. My OH is self-employed -he does not get paid if he does'nt work -so if he had to wait for months on the NHS it would cost us far more than the £150 to jump the queue.