What's "normal"?

[Sporf]

Hi,

In November I found a lump on my throat, sneakily hiding behind a ligament but quite definately to me on my thyroid. 

My old GP (I've moved house since then) was sceptical that anything was even there, but referred my for a scan anyway.  It took from the begining of November until the end of March for the appointment for a scan to come through, and the scan confirmed a growth on my thyroid.  Since November, the lump has gone from reletively soft to rock solid, crept from behind that ligament to halfway across my trachia, and is completely immobile so is making swallowing difficult, and my voice is somewhat affected - which is in turn making work hard as I mainly work on telephones.  The gland that is under my jaw above it is swollen, but is perminantly swollen anyway from a lot of childhood throat infections.  I've not been prodding away at the lump in case it makes it worse, but gently checked its progress every now and then.  I'm unsure whether that rate of growth is considered normal for a poorly thyroid, or if it's quite fast - any ideas?

After the scan I've been given an appointment to see endocrinology in three weeks time, and given that I waited so long to get scanned, I was wondering if the short waiting time for an endocrinology was normal.

I'm quite aware that the lump is showing some red flags for cancer, so am wondering if the timescales are more what is expected of a suspicious lump appointment than regular disorder waiting times.

I'm not panicking or in a tizzy over what the lump could potentially be, so I'm not looking for reassurance, more a better idea of what I should be expecting when I get there, as my brain sometimes goes blank when dealing with doctors and I come out thinking of all the things I should have told them!!

If anyone can tell me if the wating time is normal, and what to expect to happen in that first appointment I'd be grateful!

[Yvos]

I would push your GP since Nov is way to long and having a detrimental affect on your life; I have an under active thyroid and find I am the one driving all blood tests etc - hope all goes well for you 

[Yvos]

Ps I write everytime down and go in with a notebook 

[cjrsquared]

I would expect them to do a fine needle aspiration (FNA) in order to investigate further. They may also do some nuclear tests which involve taking a small amount of radioactive isotope then going under a gamma scanner to see if  all your thyroid tissue is normal or not. I would also expect them to take blood tests. I think you are right there are some red flags but it could all be benign there is not yet enough information. Good luck.

[Boozybird]

Hi Sporf,

So annoying when you know something is wrong and it's a fight with a GP! I waited two weeks to see a specialist - I think that is the government target for suspicious lumps. Mine was fluid and removed quickly - everything was fine in the end so please remain hopeful. I wasn't told why people get fluid/swelling on the thyroid so am non the wiser - they said it was common and might come back and they would be happy to drain it again. The draining was a bit gross but not too bad. best wishes

[Sporf in reply to Boozybird]

It's something that gets to me quite a lot, I find that a lot of GPs are quick to fob you off and make you feel like it's all in your head.  I once ended up in A&E with accute pancreatitis (due to an infected gallbladder rather than being too fond of booze) after my old GP dismissed my pain as "IBS"!

Did they drain your cyst at the same the time as they did a biopsy?

[Boozybird in reply to Sporf]

Yes! my experience too! I guess 10 mins just isn't enough time or they are very literally minded people ... now I try not to say too much or I write it down for them - trying to keep it simple. I even tried using medical names but they look aghast and ask if you are medically trained! You can't win. 

Yes, the consultant just took a big needle and drained away - gross but not painful - sent it for analysis and on follow up scanned my thyroid and said both results were fine. No explanation as to why my thyroid would suddenly develop a mind of its own and start producing large quantities of gunge but hey ho.... keep us posted. always helpful to have this expert group of people on hand for advice!

[bridge1 in reply to Boozybird]

Hi Boozybird -

I has a cyst drained over a week ago, and although it was Ok, it has filled back up, and is hurting again, in the jaw, neck etc.... Did they have to do yours again, and what has happened since.

I'm going to have to do something about mine, but not sure whether to go to the Docs ir straight back to ENT. Any suggestions? Thanks

[Boozybird in reply to bridge1]

God! Poor you. I can't help thinking that some doctors are just not very good! Phone that buggas office and tell them that the cyst has filled up again. Do you know the name of the consultant ? You're going to have to get bolshy in a productive way... Not acceptable ...

Keep us posted X

[bridge1 in reply to Boozybird]

Thanks for replying - So yours didn't fill up ?

[Boozybird in reply to bridge1]

No it didn't refill and touch wood is still flat over a year later - they said it might refill but I got the impression rightly or wrongly that it might take a few years not a week! Definitely phone the secretary of the consultant - they are usually helpful rather than muck about with GPs or receptionists....

At the time when they drained it they said the fluid was fine and no one knows why they suddenly decide to fill up but there was no discomfort so please don't put up with your situation. They are there to help. you have already queued up for the treatment so why should you have to start again.... keep us posted. best wishes xx

[TammyNorry]

I have no idea of waiting times but I would suggest that, if, like most of us you get a bit fuzzy under the circumstances, get someone to go with you. Not to reassure you but to act as an extra set of ears and an extra brain. Prep them to ask questions, e.g. If they don't understand something to ask for a fuller explanation. I've found that works for me.   Good luck

[SilverAvocado]

I had a lump that did turn out to be cancer. At every stage I was told it wasn't suspicious, and there seemed to be dozens of stages! 

Mine turned out to be fairly voracious, as it was follicular and quite large, rather than papillary which seems far more common. So I'm not sure there really are 'danger signs' if you like, lumps can have all kinds of behaviours  

When I first saw an endocrinologist they were quite junior and I think quite keen to rush me out the door. I get the impression the vast majority of lumps are completely benign, as I went through the system there was always the idea that I had a very small chance things would be serious enough to get to the next level (although I also always thought clinicians see numbers like 10% as vanishingly small. But to the patient as 10% chance can seem like quite bad odds!) 

It wasn't until it was confirmed to be cancerous that the speed of things increased and I started seeing senior doctors. But I think it's normal that the Endo waiting list would be shorter, as that's one made internally from inside the hospital, rather than being externally from a GP. I think they make the assumption most GP referrals will be nonsense. 

[Sporf in reply to SilverAvocado]

Cripes, you must have be cursing the dragging of feet during your first contacts with the hospital, I know the initial "I'm not convinced there's anything there" that I got didn't make me feel great.  Now I know I was right all along (I rarely crow about being right, but when you're made to feel like a hypochondriac it's an earned privilage) and I'm feeling that had my GP actually examined me properly the priority of getting the thing checked out might have been different, I'm a bit indignant.

How's your journey with treatment going?

[SilverAvocado in reply to Sporf]

I'm now 3 years after my first operation. And that was 8 months after I first spotted the lump. The treatment took just under a year. 

I have been quite unlucky, in that thyroid replacement hasn't gone well for me, and I'm still in a largely house bound state, lost my job, etc. I'm just at the point now where I've been self-medicating for about 5 months, and getting small improvements. But it's really been small improvements the whole time, really, since the first operation. 

[Sporf in reply to SilverAvocado]

Argh, that's not great!  It's hard to believe that one little gland going wrong could cause so much disruption.  By self-medicating do we mean *cough* "self-medicating", or complimentary therapies / lifestyle changes?  I'm already on a large cocktail of potions and pills already and whilst, meh, a pill is a pill and another is no great shakes, I'm starting to get the impression over medicating ain't all it's cracked up to be!

[SilverAvocado in reply to Sporf]

Once the thyroid is removed, you need thyroid replacement (some form of thyroxine) for life, as the thyroid is an important organ that does a lot of things. Without it I'd get slower and slower and eventually die. Without a thyroid, no lifestyle changes or alternative thing that doesn't contain the hormones will change that. 

The self medicating I do is to buy my own tablets from overseas. They're a different format of thyroid hormone that the NHS is quite hostile to. So I make my own dosage decisions,  pay for my own blood tests, and monitor my temperature, pulse and blood pressure morning and night.

I'm raising my dose slowly, and I expect to get to my ideal dose in the next 3-6 months. So at the moment I'm on a bit of a waiting game, but at this point I'm better than I've ever been in most respects, a little worse in some others. Brain fog is the thing that's improved most notably, I really have been in a confused daze for the past 3 years, but I'm now able to read light novels or watch TV and actually know what's going on. But my stamina is less, so I'm not as mobile in terms of leaving the house, and I can get terrible cold or nausea if I try too much. 

[Boozybird in reply to SilverAvocado]

that's really horrible for you Silver avocado (great name!) As if your original problem isn't bad enough you now have to take control of your situation and try and manage it yourself! It really IS the pits. Too many people not actually being able to rely on the health service for health just triage... I hope you are having a slightly better day and I really feel for you at home trying to muddle through. I wonder how many of us there are in this situation... best wishes x

[Clutter]

Sporf,

3 weeks is a quick appointment because they'll want to do a fine needle aspiration biopsy to check the lump isn't malignant.  95% of nodules are benign.  The procedure isn't painful as a local anaesthetic is applied but it is uncomfortable lying with your throat offered up.  There will be some bruising and soreness for a few days after but nothing that paracetamol or ibuprofen can't handle. 

I was referred to a thyroid surgeon 4 weeks after ultrasound scan showed a nodule >2.5cm.  I don't know whether the nodule looked 'suspicious' on the scan but it is protocol to FNA nodules >1.5-2cm.  My result was thy3 which is inconclusive.  It wasn't repeated because hemilobectomy was scheduled to remove the nodule which was compressing my trachea.  Histopathology determined the tumour was malignant so I had completion thyroidectomy 3 months later and the cancer hadn't spread to the remaining lobe.

[Sporf in reply to Clutter]

Thank you for the insight!  I'm on quite a heavy painkiller regimen anyway due to other disorders, so a bit of swelling or bruising will probably not even register!  I was planning to return to work after my appointment, in your opinion is that advisable? 

I'm assuming a fine needle aspiration isn't going to be something that I can expect results from on the same day do you happen to know how long results take to come through? 

My new GP did say that she feels I will have to have the whole thyroid removed anyway, as like yours had been it's compressing my trachea.

Are you doing well in recovery from the surgery and illness?

[Clutter in reply to Sporf]

Sporf,

I think you'll be fine to return to work afterwards.

I was given a preliminary analysis of the cell pathology same day but I think that's rather unusual.  The core biopsy result was several weeks later.  3-4 weeks seems to be the time frame most members report.

Recovery from surgery was good with no loss of parathyroid gland and minimal scarring, now just a fine white line in the hollow of my throat.  I had a lot of problems with medication which took 21 months to sort out but I've been well on Levothyroxine + T3 for 2 years.

It's amazing how much easier it ease to breathe and swallow food without a great big lump in the way, and dental work is a breeze when you can breathe without gagging.

[Sporf in reply to Clutter]

I really am looking forward to eating, drinking, and swallowing my own saliva not being a logistical nightmare, plus there's a really uncomfrotable tugging sensation I'll be glad to see the back of!!!! 

[ThyroidThora]

Hi there

I'm not sure what advice you want but I was diagnosed with thyroid cancer 3 years ago. A CT scan found a calcified nodule on my right thyroid gland. My GP was useless and I had to wait nearly 2 months to see an ENT specialist by which time I'd done my own research and told the specialist what he had to do. He wasn't in any rush and wanted me to wait 6 weeks for a scan, then weeks for a blood test, then weeks for a FNA and weeks for anything to follow. I explained to him that I had a 65% chance of cancer, I'd waited months before I got a CT scan and that he should have the results and would not need a scan. I told him I needed blood tests, a fine needle aspiration (FNA) whereby they remove cells from the thyroid via a syringe (fine needle) and an endoscope thingy where they put a camera down the nose to look at the thyroid gland. He did the camera, FNA and blood tests during my consultation and then I got an appointment for a scan a few days later. They'd already got the bloods and stuff back before I'd had the ultrasound scan because during it the sonographer kept saying make sure you got to your ENT appointment. I said I'd already got an appointment for later that month but he insisted I check the date. I went to the outpatients department and was told that a new appointment was in the post. I got home and it had been brought forward by more than 3 weeks and that I had to go back in a few days time. I did so and was told that I had suspected thyroid cancer. This all happened within 3 weeks and I saw a surgeon 2 weeks later and then 2 weeks after that I had it removed.

I hope this gives you an idea of the time scales if you push them to do their jobs. I knew that I should never have seen a specialist at the ENT but an endocrinologist, but my GP was a twat and had done the wrong choose and book form and I had to take the ENT appointment just so that I could get seen.

If you need further advice or just someone to chat to then please don't hesitate to PM me.

Good luck.

TT xx

[Sporf in reply to ThyroidThora]

Yes, that's great, thank you!  I work, so knowing what to give my manager a heads-up on in regards to timings will just help me feel a little less like I'm dropping my team in poop.

I kind of twigged that el lumpo (known by my colleagues as Tyrone as you can see the bugger quite easily, they say hi to him before they do me at the moment) was possibly suspitious during the ultrasound - as you know, your head is bend right back so you can't see anything.  A trainee started doing the scan and was chattering about what she was doing with the fully qualified guy, then there was a silence and the guy took over who promptly scanned all lymph nodes from collar bone to ear on the side that Tyrone inhabits (the other side was done as well, but not as throughly).

In my favour, I'm 36, no family history (of thyroid dysfunction or cancer), do have some symptoms that tick thyroid disorder boxes, the low incidence of thyroid cancer in statistical terms, and that Tyrone started out squashy.

The suspect things are that it's now hard and firmly glued to my trachea (to the point that it tugs when I swallow), there's the inflamed lymph node, the growth rate, and all my "thyroid" type symptoms are all the same symptoms as fibromyalgia, which has a high co-morbidity rate with a genetic disorder I have.

I'm probably meant to be freaking out *just* on the posibility of cancer, but it seems my brain has decided to deal with only the certainties - that being that there's a lump, and things will be done to it.

Did you have to stay in hospital at all?  I have a dog and live alone, so need to make sure that the person who means the most in the world to me is looked after if I get stuck in!

[ThyroidThora in reply to Sporf]

Hi,

Sorry for the delay in replying, I've been looking after my grandson these past few days and not had a chance to go online properly.

Your symptoms sound just like mine. I started feeling the hard lump properly about 3 years before it was diagnosed. I told my GP of my concern and was told it's just swollen glands. My lump was pushing on my windpipe more so during the night and I kept waking up choking. 

Yes, if they decide to operate you will need to stay in hospital. I was told that I'd been in hospital for a few days but ended up staying in overnight. The operation is a long procedure and can take from 3 hours to 7 hours depending on what needs doing. I was in surgery for over 4 hours and they only took the right side of my thyroid that contained the lump. The intention was to remove the right side, biopsy the lump whilst I was under the aneasthetic and, if it came back positive for cancer, the left side would be removed and then I'd have radioactive iodine treatment. In the end the nodule was so hard it could not be biopsied during surgery so they sewed me up with the view of during surgery on the left side once the results were in in a couple of weeks time. My cancer came back as encapsulated follicular variant of papillary thyroid cancer and there was no need for further surgery or radioactive iodine treatment.

Which hospital is going to do your treatment? All hospitals have their own way of doing things, and don't necessary follow the procedure as laid in medical text books and information leaflets your get from cancer charities. I was told I'd be kept in for 3 days and that I would have a drain in my scar removing any fluid. This didn't happen. 

Plus, I was told that if I need radioactive iodine treatment then I would be taken back into hospital a few weeks later where I would be kept in isolation and administered a radioactive iodine pill. Prior to this you have to have a low iodine diet, not eat foods containing natural iodine, so that the cancer absorbs the radioactive iodine and is killed. This also kills any rouge cells around your body that might be cancerous. 

As regards your dog, I think you'll have to put him into kennels if you have no one to look after him. Plus, you'll need someone to walk him because you might not be up to holding his lead for a while. I have a Jack Russell cross and I couldn't walk him for a few months and even now I struggle because he pulls so much. It's 3 years since my surgery and my hubby walks Charlie more than me now. I tend to take him for a walk on an afternoon and my hubby walks him mornings and evenings.

I'm signing off now because it's late but, you're very welcome to PM and I'll as much as I can.

Take care,

TT x

[Sporf in reply to ThyroidThora]

I'm not fussed however long someone takes to get back to me, I'm just very grateful that you  everyone here is taking the time out to share their experience with me - especially with such valuble details as you've just given me!

I'm hopefully going to be treated at Manchester Royal Infirmary - the endocrinologist I've been referred to is there, so I'm assuming I'll be staying there for any ops.  Apparently my new GP sends a lot of people to Trafford hospital, however I had my gallbladder out in January (I had no stones, just a *really* scarred and constricted gallbladder, which I'm wondering might be something to do with all this) at MRI and during the four days I was there, two other women came in as emergencies as their ops at Trafford had gone wrong.  I'm quite wary of the place because of that, plus I don't even know how to get to Trafford!!!  My op went really well, so whilst I know a few people have complaints about MRI I'd feel happy if I end up there.

I think I might be able to draft in a chum to take the hound for a drag if tugging will be hard to handle, he's a lurcher so a lot of dog to have suddenly jerk.   I can just about manage him whenever I've dislocated my arm (which is often as I have a connective tissue disorder), but adding a wound to the mix might not be a good idea! 

[Sporf in reply to ThyroidThora]

Urk!  It turns out it's not Manchester Royal Infirmery that my endocrinologist appointment's at, it's Wythenshawe Hospital. 

It's a different hospital to where I had my ultrasound scan done, and knowing how bad MRI are for sending results to anywhere that's not within the hospital I'm thinking I might see if I can get a copy of the scan write up to take with me.

[ThyroidThora in reply to Sporf]

Hi there, 

Is this different hospital any good? Your endocrinologist is unlikely to do your surgery unless he's qualified to do so. Is he called a Dr or a Mr? I think if you address him as Mr then he's a consultant surgeon but,if he's addressed as Dr then he's an endocrinologist and will be responsible for treating you with medication should you need it after surgery. 

I think if you're not sure about your hospital you can go on the nhs website for more information where there are ratings so you can make an informed choice.

I am sorry this is short,I am shattered and in bed after looking after both my 3 yr old grandsons for a sleep over last night, and we've been out and about all day.

Night, night for now. 

TT xx. 

[ThyroidThora in reply to Sporf]

Hi,

How are you doing?

TT x

[Sporf in reply to ThyroidThora]

So far it's been a stressful one, went to the appointment and the doctor said he was referring me for an "urgent" biopsy, and it would have to be done within the week.

They took blood samples, and sent me home. After a week of hearing nothing about this "urgent" biopsy, I called the department, and the nurse said that I would have heard by now if it was urgent and "we only refer things as urgent when we think it's cancer" - then found my file and said "yours *is* marked as urgent" - apparently my file had been left in the wrong pile, and there should have been a boxed ticked on the outside for it to ensure it was handled as urgent. She said she'd push it through and that I should call again if I hadn't heard by this week.

I didn't hear back, so I called again today, and finally have a biopsy booked for the 9th of June - quite a long time given that this was meant to be urgent and my notes quite obviously state that cancer is suspected.

Hearing the nurse actually say that it's suspected to be cancer feels weird. I know it was by accident, but she's the first to actually say it - so far, I've only picked up from clues in what people have said and their body language, so managed to rationalise that I might be misreading things.

I've not told anyone bar my manager at work (so he knows I need to go to appointments at short notice) because I know the C word scares people, I haven't even worked out how *I* feel about this whole saga, never mind having to keep other people calm.

Oooh one thing I think is in my favour here is that apparently I have a second, much smaller nodule (I can't feel it at all) on the other side of my thyroid. I can't remember the measurements, but as far as I remember, isn't more than one nodule considered an indicator that they're likely benign?

[Boozybird in reply to Sporf]

Hi Sporf, that is horrible for you that you can't rely on anyone to do the right thing! Jeez! As if you need to be chasing the hospital! Is your GP someone that you could talk things through with? It does help to just talk things through - Very stressful dealing with mistakes, delays on top of the actual problem. grrrr....

Please keep us posted on how youre doing? sending you hugs x

[Boozybird in reply to ThyroidThora]

Hi TT - that is really impressive - well done.