If this isn't a goiter what is it?

[PurpleNel]

Hi everyone and Happy New Year.

Just looking for a little reassurance or wisdom regarding my throat lump.

I was diagnosed with Hashis last year. Have trouble swallowing and the sensation of something pressing into my neck when I try and lie down that makes me gag and cough. I am still very ill and am about to start NDT when the prescription comes through after initially starting on 50mcg of levo with no improvement. Several nutrient levels still low despite supplementing.

A rather unpleasant appointment I had with an ENT doc resulted in him saying I didn't have a lump and I was imagining it because I was anxious. I know it isn't very big but my neck never used to look like this.

My family paid for a private ultrasound as I was twice rejected by NHS which said there was no nodules and 'the thyroid appears to be normal in size, shape and echogenicity' (whatever that might be) with 'a mild increase in background vascularity but nil else of note'.

My private thyroid specialist says 'who knows what the lump is' (not at ALL reassuring). If she'd said it was a goiter I would have accepted and understood that. She did say she was very relieved that there was no cancer as with my blood results and symptoms she was fairly convinced the ultrasound would show cancer.

So...if it isn't a goiter what is it?

Has anyone else had a small lump like this with an ultrasound that seems to say no lump or swelling should be/is there?

Thanks as always for the time anyone gives to reply.

[greygoose]

Looks like a goitre to me! Plus all the necklace lines around it are screaming hypothyroidism. But, I seriously doubt that doctors even know what a goitre is!

If you have Hashi's, then it's not surprising if you have a goitre - which, BTW, is a swollen thyroid. I have Ord's, which is basically Hashi's without the goitre. Yet, my doctor - a particularly ignorant man - looked at my blood test results and announced 'oh, you have a goitre!', without even looking at my neck, which was spectacularly goitre-free! I think he thought the word 'goitre' was just another name for 'hypothyroidism' and the two words were freely inter-changable. Which they're not!

One thing you have to understand before you go any further on this journey, is that doctors are over-whelmingly ignorant on this subject. They just do not learn much about it in med school, even though it's one of the most common modern diseases. So, if they don't know what a goitre is or what it looks like, it doesn't really surprise me.

Happy New Year!

[PurpleNel in reply to greygoose]

Thank you for your reply Greygoose - that you can see something at all is reassuring. I totally agree about doctors' ignorance having already encountered so much of it but my private endo does know what a goiter is which is why it surprised me so much that she was hedging about it. Also, as you say, a goiter is a swollen thyroid but my ultrasound said there was no swelling (at least I assume that is what 'no change in size and shape' means) so if the ultrasound says no swelling what is this lump?

[greygoose in reply to PurpleNel]

I would have thought that was what 'no change in size or shape' meant, yes. But, it's very strange. As is the attitude of your endo. I cannot imagine what is going on.

[DelicateInput in reply to greygoose]

It is a goitre and looks similar to mine. I had the same caper for nearly 20 years with various doctors denying it. I had some blood tests done recently and with a TSH of 7.28 (which has been over 6 for nearly 20 years), the GP swore that the thyroid was functioning perfectly normally and he had loads of patients with TSH readings under 10 who were not treated, so I asked why I had a goitre if the thyroid is normal. He insisted on seeing me immediately. He admitted it is a goitre and he could feel numerous nodules (as could I for many years) and is arranging an NHS ultrasound. I think this is because the nodules could be cancer but I would be dead by now. The thyroid is quite painful to the touch. It seems to me they are waiting for nodules to appear and then it will be all guns blazing to cure what they could have easily prevented. This is the NHS.

I think you need to persevere with a thyroid specialist. I would ignore the ENT specialist. It seems to be a specialty of rudeness. I've had sinusitis and allergies for the same period, difficulties swallowing and I encoutered equal rudeness and denial. I have been choking to death with a cough for nearly 20 years and that was denied as well.

I would like to know if a goitre is reversible once thyroxine treatment is started. I am inclined to think mine is because I cannot take up iodine from food. I am a different person by the coast and can take it up from the air. I don't have antibodies so it is unlikely to be auto immune. I have started on Levothyroxine prescribed at 25 mg but I am taking 50 mg and ther is no difference to symptoms. The goitre just looks worse every day.

[greygoose in reply to DelicateInput]

Have you had your iodine tested?

50 mcg is just a starter dose and not likely to make any difference to symptoms. Your dose should be increased by 25 mcg every six weeks until you feel well. But, I really can't say if the goitre will go when you're optimally medicated. Depends what's causing it.

On the subject of antibodies, how many times have they been tested? You cannot rule out Hashi's on the basis of one negative blood test for several reasons:

* antibodies fluctuate all the time, so may be negative on one test and positive on another.

* There are two types of Hashi's antibody: TPOab and TgAB. The NHS only tests for TPOab, but if the TgAB are high, even in the absence of TPOab, that does indicated Hashi's.

* 20% of Hashi's people never test over-range for antibodies. They are diagnosed by ultrasound. So, it's good that your GP has arranged for one.

It seems to me they are waiting for nodules to appear and then it will be all guns blazing to cure what they could have easily prevented.

You can have a goitre without nodules. And, you can have nodules without a goitre. But, either way, neither can be prevented. Not sure what you think should have been done earlier.

[DelicateInput in reply to greygoose]

I looked over my old records dating back to around 2002/03 and tests for antibodies were done from time to time by the lab as I was getting tested every six months for the raisedTSH. I was also seeing a private chest specialist who noted the high TSH and tested for antibodies - there were some antibodies but these were deemed to be within the normal range so I guess everybody has them to a certain degree. It is really hard work sifting through 20 years of medical records.

What I think could have been done was to offer me some thyroxine treatment for the goitre that I clearly had and this would have stopped it getting worse or possibly reversed it. I have had throat pain, swallowing difficulties, a persistent cough and felt unwell for many years. I don't consider I should have had to suffer that in a developed country.

The only possible explanation for the goitre is that I do not take up iodine which I think was confirmed when I worked in Switzerland but it was an awfully long time ago.

I possibly don't take up certain nutrients because I have a stomach ulcer/chronic gastritis caused by h-pylori and I also had a bout of listeria in 2017 which has never resolved fully. It really is too much to expect the NHS to cure a simple infection or prevent a goitre both of which only exist in the third world. I think they are waiting to see if PurpleNet develops a nodule before investigating as they do not want the expense. They are only arranging an ultrasound now for me to cover their own backs and I don't trust them so I think I will have it done privately. I have as much trust and confidence in them as I have in the man in the moon.

[greygoose in reply to DelicateInput]

Everybody does have some antibodies, yes. But, as I said, you could still have Hashi's because not all Hashi's people have raised antibodies.

They wouldn't give you levo just because of a goitre. And, even if they did, there's no guarantee that the levo would get rid of the goitre. But, I agree with you that you shouldn't have had to suffer that. I had hypo symptoms for nearly 50 years before my diagnosis, and no doctor ever thought to test my thyroid. It should be the first thing they think about, not the last.

Sounds as if you have low stomach acid - which most hypos do. But doctors don't understand that. Their education, as far as thyroid goes, is woefully inadequate. They know next to nothing about it, and care even less. If they possibly can, they avoid all involvement with it, which - I think - is why they're so reluctant to diagnose and treat.

[DelicateInput in reply to greygoose]

Thanks for your reply. I just think it is the NHS that is the problem. It really is a sorry state of affairs when they cannot cure h-pylori (or listeria). As a result, I had an emergency colonoscopy because they were convinced it was cancer on account of the symptoms and found the ulcer/gastritis I knew it wasn't as I have no risk factors. I don't have low stomach acid - I need to take Omeprazole to reduce it but if I do, I get another dose of listeria. I have constant heartburn on account of high stomach acid.

I also have abnormal Vit D readings - again, I need sunshine as I cannot extract Vit D by diet for the same reasons as the iodine intake and this has been caused by being indoors so much.

If a bit of attention was paid to many ailments, the NHS would have a lot of spare capacity but instead all resources are concentrated on investigating possible cancer. I had endometriosis for many years - the symptoms are exactly the same as for cervical and endometrial cancer so the NHS spends a fortune testing for cancer when it is quite obvious people do not have it. I lost count of the number of surgical investigations but I had to pay privately for the treatment because the NHS would never treat it. The only way to distinguish between endometriosis and cancer is that cancer has a foul smell. Jade Goody described it and it was endometriosis to a tee except for the smell.

[greygoose in reply to DelicateInput]

I don't have low stomach acid - I need to take Omeprazole to reduce it but if I do, I get another dose of listeria. I have constant heartburn on account of high stomach acid.

Ummm... sorry to have to tell you this, but the symptoms of low and high stomach acid are exactly the same. Did your doctor actually test your stomach acid level before prescribing omeprazole? Or did he just guess it was high because of the constant heartburn? That's a mistake they are constantly making. You don't get stomach ulcers with high stomach acid. The acid kills the bacteria.

I don't think the NHS is the only medical system that is failing in so many ways. I live in France, and things are just as bad here.

[DelicateInput in reply to greygoose]

I have never mentioned the heartburn. I had diarrhoea for a long time, made worse by a certain brand of Hydroxychloroquine plus Prednisolone which has to be taken late morning (nobody told me but I found out the hard way). This was for RA.

I was then rushed into hospital as an urgent suspected cancer case. The gastro specialists at the hospital thought I had high stomach acid, and found an ulcer plus chronic gastritis at colonoscopy. They recommended I take Omeprazole to reduce the acid .... but it reactivated listeria.

As regards h-pylori, this was confirmed at a private screening. The NHS would not accept the finding and did their own test which took them months whilst I was suffering. The result was again positive. I was given antibiotics - two types - but they failed to kill the pylori so I still have it. Don't tell me every other Western country gets an antibiotic dose wrong or that other countries do not prescribe probiotics as they should. I find the probiotics stop the diarrhoea for a while but they are very expensive along with everything else medical I have to pay for. You name it, the NHS does not do it unless cancer is suspected or you have heart disease or you need joint replacements.

[greygoose in reply to DelicateInput]

OK

[SlowDragon Administrator]

Hardly surprising 50mcg levothyroxine didn’t improve symptoms….that’s only a starter dose

Dose levothyroxine should be increased slowly upwards in 25mcg steps until on approx 1.6mcg levothyroxine per kilo of your weight per day

What were most recent thyroid and vitamin results

Results 6 months ago

IRON STATUS/FERRETIN - normal range 13 - 150 - mine is 167

FOLATE SERUM - normal range 2.8 - 14.5 - mine is 4.5

B12 - normal range 25.1 - 165 - mine is 92

VIT D - normal range 50 - 200 - mine is 56

TSH - normal range 0-27 - 4.2 - mine is 5.04

FREE T3 - normal range 3.1 - 6.8 - mine is 5

FREE THYROXINE - normal range 12 - 22 - mine is 16.2

THYROGLOBULIN - normal range 0 - 115 - mine is 552

THYROID PEROXIDASE - normal range 0 - 34 - mine is 233

Results from 6 months ago showed

Low folate and vitamin D

What vitamin supplements are you currently taking

High thyroid antibodies confirms autoimmune thyroid disease

Have you had coeliac blood test done

Are you on,or tried strictly gluten free diet

[PurpleNel in reply to SlowDragon]

Hi SlowDragon - my latest tests show TSH - just under 3 (0.27-4.2) - I know, thanks to this forum that this is till too high for someone on levo

T4 - 18 (12-22)

T3 - 5.1 (3.1-6.8)

Vit D an improvement at 73.4 (50-200) as it went under 50 - taking liquid D3 with K2

Folate even lower - just upped dose on endo's advice

B12 still going down but not deficient

Ferritin down a little - now in range.

Several of blood count results still abnormal

[SlowDragon Administrator in reply to PurpleNel]

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

With TSH over 2 you need 25mcg dose increase to 75mcg levothyroxine

Which brand of levothyroxine are you currently taking

[PurpleNel in reply to SlowDragon]

I am going to be coming off the levo and trying NDT. Endo thinks this will suit better. We will see.And yes tests always done now as advised on here - first thing with nothing to eat or drink.

[annnsandell]

I went 2 years with a goitre and was misdiagnosed until it had grown and a nurse practitioner confirmed it sending me to a surgeon. I don't know anything about Hashis but if the thyroid is swollen that might not show on a scan particularly if they don't have measurements pre swelling. My main reason for writing was to say that an ultrasound cannot detect cancer not that I think this is. Did anyone feel your neck? Sorry, I don't have any suggestions, however, have you looked up 'background vascularity', interesting?

[PurpleNel in reply to annnsandell]

Thanks for your reply - your comment re not having measurements pre-swelling is a very good one and something I hadn't thought of. If there is nothing to measure it by how do they know if it enlarged or not?....hmmmmm....And is that true about ultrasound not being able to detect cancer? I thought that was what they were looking for. I get so easily confused.

Horrible ENT (the one who said 'I can't see any swelling' )man felt my neck. When my GP felt it that is when he sent me for a NHS ultrasound (but that was rejected by hospital).

Am very bewildered by it all.

[Litatamon in reply to PurpleNel]

Hi PurpleNel,

A fine needle biopsy is needed to detect cancer, not the ultrasound itself.

Hope you get to the bottom of it all.

[PurpleNel in reply to Litatamon]

I thought if there are no nodules there is no cancer so if no nodules they don't do a biopsy. Please correct me if I'm wrong - I know so little about this.

[Litatamon]

Sorry to be confusing. I thought you were questioning if an ultrasound alone could determine cancer.

[PurpleNel in reply to Litatamon]

No you are not confusing me bless you (although making a cup of tea can be confusing for me!) I appreciate you taking the time to respond. The more I know the better.

[Litatamon in reply to Litatamon]

While preparing for a thyroidectomy, due to some very large nodules constricting airways, I have asked a lot of questions from the surgeon. She and my endocrinologist have both discussed some difficult cases. And how nodules can grow in crazy directions.

It makes me wonder if you can have nodules that are somewhat hidden, growing behind etc. I know with my gynaecological issues they often go to an MRI/CT when something is evident and needs to be pinpointed more than an ultrasound can "see".

Just wondering out loud. Take my words with a grain of salt.

Hope you get it all worked out.

[PurpleNel in reply to Litatamon]

That is very interesting - I have also wondered if I have a sneaky hiding one.

[Litatamon in reply to PurpleNel]

Once again, do not take my words too seriously. It is 5 am here!! Insert smile.

[Litatamon]

Also the comment about not seeing any swelling is ridiculous. You can hardly see mine looking at my neck, until I swallow. And even then it does not seem like much. And mine is quite large. It plays out differently for everyone.

They should be given you some insight if they are saying it is not a goitre.

[PurpleNel in reply to Litatamon]

Thank you so much for all of this. I think I will need to monitor things closely as I am so far from reassured by the scan or my docs. I too think the swelling is very obvious although in that photo I have purposely got my head into the position where it shows most - it doesn't always look quite that obvious when I hold myself naturally. But even having to strike a pose to see it means something must be there or no pose would show it. (If that makes sense!)

[Batty1]

Wow your ENT must be a real magoo to not see the lump on your neck.

[MaggieSylvie]

Good God! I think I learned about this in school, or perhaps First Aid. I think I have a nodular goitre - it's been lopsided for years and some doctors that I have met socially have noticed it, but it hasn't changed. It's been tested quite a lot over time and I was even diagnosed with an underactive thyroid by my GP and given Levothyroxine! It probably needs watching, but if anything, judging by my lack of sleep and anxiety, I have an overactive thyroid or nothing wrong at all. I just need to tweek Vit D and B12, but my thyroid is not swollen like yours. My GP has never felt my thyroid, despite the diagnosis and I now have a new GP. If I had a swelling like yours or wouldn't let anyone fob me off. It's the time of year to start as you mean to go on. 🤗