Thyroid UK
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Help with NHS exasperated where to turn

I have a large multi nodular goitre pressing in my windpipe it's causing breathing issues when I sleep I stop breathing and wake up all the time. I'm waiting on surgery for a total thyroid removal but trying to get help on dates is proving impossible. Last week my surgeon's secretary told me that I should have a date soon so I got my hopes up. I rang the person who actually makes the hospital appts today and she was unhelpful and said I wasn't now urgent and that I could be at least another 3 or 4 months best case. I feel like I don't know where to turn and no one is helpful I was pretty much spoken to in a very dismissive tone and she couldn't get me off the phone quick enough...my experience of the NHS with this has been dreadful. I feel like I'm an imposition and nit treated as a patient. Thanks.

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Hello there i just wanted to say i know how you feel about the breathing issues i too am the same and even though it hasnt been confirmed yet that something is pressing on my windpipe i know i have a nodule there and also it makes me cough. I couldnt believe when i read your thread i thought that is me!! I dont see endoc till october and im hoping they do a scan. I also wake up in the night struggling for breath and also cannot put my chin to chest as this aggravates breathing even more. Sorry i cant offer you advice but im sure others will be able to. I have been taken by ambulance 2 times to hospital and they wont touch me with a barge pole and said oxygen 99% airways open but i said its like sucking tbrough a straw. csn i ask do you have swallowing probs aswell? Xx

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Hi thanks for replying yes I do have swallowing problems. It's a horrible position to be in with no real light at the end of the tunnel as to when I'll get operated on...I feel helpless to be honest. The hospital were v abrupt and rude to me and I got little assurance about when I can get an operation date. They don't seem to take this seriously. I am also asthmatic and told them this but it falls on deaf ears.

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I tbink you have to be dying to get in first, i think it should be priority breathing problems but as long ad the oxyven is coming through they are not fussed

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Yes I agree with you !!

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Sorry snoopy i seemed to have hijacked your post with my questions to clutter.xx

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Snoopy3,

Waiting lists are getting longer. Unless it is an emergency you probably won't be added to the surgeon's list until they can guarantee surgery within 3 months.

I found it helpful not to lie flat when trying to sleep. I wasn't so aware of the nodule choking me when I slept banked up on several pillows.

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Thats how i sleep and i tilt my head back slightly sometimes it feels like a choke on water. Its very scary anf frightening.

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Rmichelle,

I didn't realise quite how obstructive the nodule was until I had it removed. I was amazed at how much easier dental treatment was once I could breath easily and wasn't choking on every little drip of water and saliva.

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Was yours picked up on a ultrasound.i cant wait to feel better, feels like sometimes we imagine things, just hard to believe 99%oxygen when something is on or pressing on your windpipe!! This is going to sound like im a crazy woman but did it also affect the feeling in your nose sort of swelled up? Sorry i can hear you say crazy lady!!😊

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Rmichelle,

No, lump appeared in my neck overnight. Ultrasound showed the nodule was compressing my trachea.

I'd complained of a lump in my throat 20 years earlier but there was no palpable lump then and I was told it was globus sensation. It didn't affect the feeling in my nose but several times throat closed and my drink came down my nose.

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Thats frightening and how was your oxygen levels.

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Sorry i have another question for you, did you have the ultrasound on visit to see endoc abd hiw long did you wait from the ultrasound to having ut removed?

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Rmichelle,

My oxygen fine, 99% I think. GP arranged ultrasound. It was six months after ultrasound that nodule was removed.

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Thats still along time to wait!! When you go to see endoc for the 1st time do you have ultrsound fone then?

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Rmichelle,

Endos will only order an ultrasound if they think it is clinically necessary. Nodules are usually slow growing so it would be unusual to require ultrasounds more frequently than annually or biannually. I had completion thyroidectomy and was treated by surgeon and oncologist for 6 months before I was discharged to endocrinologist. There was no reason for my endo to do an ultrasound scan.

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I understand. I have been told by my doctor that endoc will probably want to do a ultrasound and i think it is necessary givin my symptons and i will be pushing it. I can feel it in my throat now and keep clearing my throat.if i had the money i would go private definatley but that is not going to happen. Thankyou clutter for your advice. 🌻

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Hi Rmichelle, my doctor told me privatecould be very expensive especially if you needed intensive care!!

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Hi Clutter, It seems like operations are a long wait, but if you can pay it can be done almost straight away privately. I'm trying all sorts but I seem to stop breathing most nights and wake up its panicking my partner too as he thinks I'll not start breathing again.

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Snoopy23,

The reason people go private is because they are unwilling to wait for NHS operations. Ask your GP whether there is anything to help you breath at night and whether GP can help get the surgery brought forward.

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Like you I also had a large multi nodular goitre, but I was lucky as mine was coming outwards so nothing inside was compromised which was confirmed on a CT scan, I was quite fortunate as from deciding to have op and to actually having it was just under 4 months, I think it varies from hospital to hospital how long the wait is, hope you get sorted and are not having to wait much longer

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Hi Teddy71, thanks I had my hopes up for a date soonish but that was changed today and was told December or January at earliest which seems a long old wait !! Will see if my doctor can do anything to help.

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Push and push them be a pain in the ass, tell them it is having alot of mental pressure on you and you are scared.

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It may be worth giving consultant Secretary a call. Request consultant return your call as you need to speak to him/her due to condition deteriorating. It worked for me.

Ultimately, your consultant (and yourself, reporting changes), are responsible for your care.

Secretary, nor appointment making staff, are clinically trained, thus, not within their remit to bump you up the waiting list. Only the consultant can do that.

If you get no return call from consultant, or change in appointment for surgery, at least you have done what you can, and your call, and advice given, has to be recorded on your notes. (May be helpful in research for what can be done better and show waiting times cause further suffering).

Meanwhile, as clutter says, use extra pillows to keep your neck elevated at night. You are bound to be anxious, but anxiety has a worsening effect on throat sensation.

Good luck. Thinking of you.

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Hi I didn't have to wait to long .but like most people ,I have asthma Atrial fibrillation and essential tremors ...I was sent for breathing tests , I don't think that went very well,as the nurse was on the phone a lot talking about my breathing etc .I expected a letter ,I didn't get one ,..it's a serious opperation ,I know that and although I have suffered breathing and eating problems in the past ,my growth on the windpipe was found accidentally because of a chest xray....thank God my surgeon was on my case I was to have an opperation three months later . On the day of my opp I saw another surgeon who said this is a very serious opp ,it can cause a stroke heart attack or death ,which did shock me ,but he then added that he'd done two a week for 16years and I was in good hands etc ...so I signed...later as I wE gowned and ready for my opp the anniethatists came to see me extent through stuff same again very serious opperation...high rust was the outcome of breathing test ,....so I'm down in theatre just about to go under ........then their was two surgeons and two anniethatists all saying I was very high risk and they wernt comfortable doing my opp ....

So I declined,it's now two weeks since opp date ,no explanation nothing ....I've been asked to have a barium swallow ,but that's going backward..I feel fed up and have anxiety .......

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