CT scan clear

[JCMartin]

I am convinced i have Goitres blocking my windpipe. Is is possible for these not to show in a CT? My arms were up in the CT so could this have masked the problem? CT was one month ago and swellings have increased since. Really want an ultrasound. If i pay for one will they take me off the NHS for any operation i may need? Cant afford the operation as well. Really getting panicky and depressed now. Been on the couch since October due to my breathing. Have a lung function appt in Jan and ENT but dont think i can wait much longer for treatment.

[Charlie-Farley]

Hi JC

I’m so sorry you are having a tough time and coming up to Christmas. The last thing you need. Did they ask you to put your arms up? Did they explain their rationale? I expect they didn’t say anything and would have not explained anything other than the steps necessary to be ‘processed’. I find it strange if they were wanting to look at you neck they would have you with your arms up in the CT. I would definitely query this and intuitively it sounds a bit off - hopefully someone else will be along and give an opinion on this.

So a month has gone by your condition has deteriorated further and how are your oxygen levels? This is the thing that needs addressing if you are still dropping below safe levels . You are using a pulse oximeter aren’t you? There is an NHS LEAFLET Link below. According to you recent post a few days ago you have already gone below the safe limit. Have you spoken to anyone about this? It may actually be your inroad to an appointment. I would go as far as to say get on the blower to 111.

england.nhs.uk/coronavirus/...

[JCMartin in reply to Charlie-Farley]

I know and i have passed out once and Ended up in AMU for 4 days - then they chucked me out. I have a heart block and i think whatever else i have going on is making it worse. Because my oxygen dips then goes back up - they get a good reading and record that. Actually worried it could be doing some permanent damage as my head feels very odd and i have real pressure headaches like someone has banged my head. They dont seem to keep it monitored so the can see it dropping. Its such a minefield as i think i have more than one thing going on. I seem a bit confused too but i think that can come with the Thyroid issue.

[Charlie-Farley in reply to JCMartin]

If you have an oximeter take readings and write reading and time and keep the record going. If you have a family member or friend who can help all the better. Don’t let them fob you off. Use the guidance in the link I gave you as leverage. I think you are being treated terribly. They are not addressing the oxygen levels according to their own guidance. If it goes low again just keep going back to them- 111.

[JCMartin in reply to Charlie-Farley]

Thanks - I have videos clips of the oxipro.

[JCMartin in reply to Charlie-Farley]

The CT was booked to check if i had a Pulmonary Embolism (as i have had one before). Thats why the arms were up and at the time i didnt realise it made any difference when looking at the neck - so assumed the thoratic one may help my case. Arms were up probably due to the dye.

[Charlie-Farley in reply to JCMartin]

Ahhh Yes of course more than one issue- frustrating they are dealt with separately.

[Bristolians2]

Do you take iodine at all? Start eating seaweed or have a few drops of lugals iodine in water a day, co factors are sea salt, magnesium, b2,b3 and selenium though. You can take up to 50mg iodine a day but start off lower. If it is a goitre it is iodine deficiency.Maybe consider nebulizing with iodine, sea salt or hydrogen peroxide to help your lungs.

I would suggest serrapeptase too but if heart block is caused by a build up of something there is a small chance it may move it instead of just dissolving it.

[helvella Administrator Thyroid UK in reply to Bristolians2]

The assumption that all goitres are due to iodine deficiency is wrong.

This link identifies eight causes:

Goitre

Goitre is a general term for an enlarged thyroid gland. Depending on the type of swelling, location, how it affects gland function and how long it has been present, goitre has various effects and is treated in a variety of different ways.

yourhormones.info/endocrine...

Nebulizing hydrogen peroxide is potentially dangerous.

Excess iodine can cause thyroid issues. 50 milligrams is a massive dose of iodine more than three hundred times the official requirement. Even if the official requirement is set too low, an increase of several hundred-fold is dangerous.

The effects of iodine supplementation, even at low levels, can be different in those who have had long-term low iodine. Great care is required.

Seaweed appears to have potential as a source of iodine but the amount present is very variable. Supplements containing iodine seem to quote typical values (if they say anything) but the product you have could have very much less or more. For fresh seaweed, we have no useful data as so much depends on location , etc.

[RedApple Administrator in reply to helvella]

Just adding the link to forum pinned post by tattybogle with a collection of info about iodine healthunlocked.com/thyroidu...

[JCMartin in reply to Bristolians2]

I dont take anything - but i dont want to scew my blood test until they get an answer. But thankyou i will save all this advice.

[Brightness14]

The first time I knew about a thyroid problem was walking up a very steep hill. I lost my breathing. Anyway it was down to my trachea being blocked by my enlarged thyroid.

That was in Sept 2014. I never receive anymore treatment and although I visited my GP several times nothing was done. Then in March 2015 I moved to live in France by April I had scans and by October I had my Thyroid removed and my trachea repaired.

The food here is terrible but the Health system is brilliant.

I know how it feels to be left and it's not easy having little oxygen to breathe. It sounds bad too what about a visit for a private scan. I hope that you get sorted out soon. Good Luck

[Litatamon]

Did you try the physical test I suggested to check for a goitre impacting swallowing & breathing?

Not saying you do not have a goitre but silent reflux (no additional symptoms hence 'silent') can give the feeling of something sitting there and blocking as well. An ENT can see that with a very small camera up your nose and down your throat. Sounds awful but no big deal & takes mere minutes, if not seconds.

So your oximeter gives normal readings as well as very alarming ones below eighty? Or does this just happen at the hospital?

[JCMartin]

Its an Oxypro. Tried it on thenkids and its fine. Also same happened with the docters one, he changed it to another and same. Then actually started believing me, but apparently hes busy for the next couple of months so i can see him. ENT 15th Jan thamk goodness. Stangely i tried and my voice is fine. Hard to get my chin to my chest due to the swelling though. Arms up does not seem to make too much difference?

[Maggiesmum]

Hi JC, it's a long time since I visited this brilliant helpful forum but your post regarding your Goitre problem jumped out at me as my husband has recently been diagnosed with a large retrosternal goitre. I'll expand on his 'treatment '.We were due to go to Italy end September and I was fed up with his coughing so marched him to the GP who thought maybe chest infection so booked chest x-ray. We also told GP that very occasionally he gets a bad retching/choking episode - of course she said another appt needed to discuss this but to try Peptac. Day after chest x-ray GP rings to say large retrosternal goitre pressing on trachea found, arranged ultrasound & advised would be on the 2 week possible cancer appt system. GP also wrote to ENT describing x-ray findings & asking if she could put the 2 week cancer lark in before receiving the ultrasound results. ENT consultant said NO & commented that it really wasn't worth operating on a 78yr old man!!! Ultrasound shows 8x7x4cm retrosternal goitre pressing the trachea out of shape. At end of 2 week cancer referral gets appt with a different ENT consultant at the same hospital who says don't know if it is cancer but it's big, dislodging the trachea which could affect swallowing & his plan would be to remove right side of thyroid gland & he had arranged (HA HA) for hubby to go down to x-ray for CT scan & FNA, back to see consultant in 2 weeks when results in. X-ray wouldn't do CT scan because "consultant has had his quota, you will get appt through the post". FNA done but told not to be concerned if called in to do again because difficult to get sufficient sample. Heard nothing re CT so rang x-ray to be told Radiologist says problem doesn't warrant a CT scan, rang consultant with this decision who said it was OK!! Day before next consultant appt x-ray dept in a different hospital in our area ring to arrange CT scan next day. Checked with consultant whether should still attend his appt because he wouldn't have CT results, he said yes. Next day drove 38 miles for CT, then 26 to consultant appt - didn't even get to sit in consultant room because "I've arranged another FNA because the first was inconclusive, I'll see you in 2 weeks". Surprise Surprise. Last consultant appt, he "doesn't think" it's cancer but needs another FNA in 2 months. "The ball's in your court". - seems to have forgotten about removing half the thyroid. We asked relevant questions like what would he do etc. Well it appears his job is not to advise even maybe consult as all he would indicate was 'it's up to you'. Hubby asked if he decided on op when would it be - response was a whistle! 2024 we will be consulting somewhere away from this group of hospitals.

Sorry this is SOOO longwinded, but maybe can you request a cheat x-ray?

[JCMartin]

Ive have a chest xray but didnt cover my neck. They were looking for a DVT in the lung. Apparently they only look for what is asked of them? I have ENT and a lung function test beginning of January and i am now on the 2wk cancer referral. I have had out of range Red Blood cells, lymphocites and Netrophils for a few months (excuse the spelling). I was on the cancer 2wk review briefly before as they were looking for Lymphoma. I have docters 4th Jan and im going to push for a Thyroid ultrasound, but docter keeps saying they cant order one (but im pretty sure this is rubbish?). I now look like a puffer fish, but no dalek voice yet. I hope your husband gets some good results. Lets keep each other posted.