Hi i have just recently been diagnosed with reidels thyroditis, is there anybody in the uk who as been diagnosed with this condition.

[lulu11]

I have this extremely rare condition of the thyroid which only 1.06% of 100,000 people in america get, this condition can mimic ana plastic carcinoma, which the doctors thought i first had & was diagnosed with it for nearly 3 weeks,i am looking for info & possibly anyone with the same condition,symptoms consist of rock hard thyroid mass stuck on trachea,surrounding nerves, tissues,both jugular veins, right cartoid artery,hoarse voice, & swallowing difficulties

[helvella Administrator Thyroid UK]

You are, to the best of my knowledge, the first poster of a question about Riedel's Thyroiditis.

There is depressingly little information for you in the more usual patient directed places. I have run a search on PubMed which produced 253 papers

ncbi.nlm.nih.gov/pubmed?ter...

Or:

tinyurl.com/cvq43rm

If you look at the left, you should see the words Free full text available - click on that and the results drop down to the 39 which are available for free.

As with so many rare diseases, simply finding people with any experience can be tough going. So please do come back and keep posting - we might not help you very much (however much we wish to) but you could very well be providing a huge help to someone else in future.

All the best

Rod

PS You had a typo in the question - searching for "reidel" will not find as much as "riedel" - though I am sure with things like this it might be spelled wrongly almost as often as correctly.

[lulu11 in reply to helvella]

Hi thank you rod for getting back to me so quickly, i will definetly use these links & i will come back with further info, i would love to help others with this condition because its very hard to diagnose, sorry for the typing mistake i have the letter here in big bold letters aswell.

[helvella Administrator Thyroid UK in reply to lulu11]

Hey - what's a little typo?

Found at least one case in the past few years in the UK:

A 42 year old gentleman presented with a 2 week history of a diffuse hard neck swelling, dysphagia and night sweats. He was found to have new onset hypothyroidism and was started on levothyroxine. His ESR was normal at 5mm/hr. A neck ultrasound demonstrated a markedly enlarged thyroid with increased vascularity and bilateral cervical lymphadenopathy. A CT neck additionally demonstrated a 1.5cm enhancing nodule in the left strap muscle. An ultrasound guided thyroid FNA showed mature lymphocytes, but no thyroid tissue nor any evidence of malignancy. A core biopsy demonstrated reidel’s thyroiditis. He was started on prednisolone 50mg od, but only tolerated this for a couple of weeks before he withdrew due to side effects. He was given a trial of tamoxifen, but chose to discontinue treatment after 6 months due to lack of beneficial effect. After being counselled regarding the challenges of carrying out surgery in this condition, he declined surgical management, nor further medical therapy with azathioprine.

Riedel’s Thyroiditis is a fibrosclerotic infiltrative disorder of the thyroid gland(2,3). It was first described by Riedel in 1896 and there are less than 300 reported cases. It occurs 3 times more commonly in females and the median age of onset is 51yrs (5,6,7). In one third of patients it may be part of a multifocal fibrosclerosis, involving retroperitoneal, retro-orbital or mediastinal spaces (1,2,3,8). It may present with a painless rapidly enlarging goitre, cervical pressure, dysphagia or dyspnoea (7). The thyroid is oft described as ‘woody’ and fixed to adjacent structures. The main differential diagnoses are the fibrous variant of Hashimoto’s thyroiditis, granulomotous thyroiditis, solitary fibrous tumour and lymphoma (7). There may be an elevated white cell count or ESR. 50% have positive thyroid autoantibodies and 25% develop hypothyroidism (7,8). The thyroid appears hypoechoic / hypovascular on ultrasound and has reduced uptake on technetium scanning (2,3,7). Surgery is technically difficult due to obscured surgical planes and may be unsuccessful, whilst carrying an increased risk of complications (7). Hence close liaison between endocrinologists and ENT surgeons is important in appropriately advising patients of their treatment options in this rare condition.

imperialendo.co.uk/metmed/P...

Do note that it is quite often called Riedel's Struma.

[lulu11]

Hi thanks rod it is helpful that there is someone else out there in the uk, i suppose there is quite a few if i can be of any help to anyone else it will be great, im not too clued up on some of the big words yet but aftyer so long im sure il get there, i have not been offered any medication as yet as was only diagnosed on 3/12/12 but awaiting ct scan plus they cannot operate as its to large, & at the moment im finding it hard to swallow but i will keep posted on thi

[helvella Administrator Thyroid UK in reply to lulu11]

Ask, ask and ask again.

No-one can go from nothing to understanding in five minutes. (And I am not saying I understand - but am quite good at finding things.)

[helvella Administrator Thyroid UK in reply to lulu11]

I have realised that he chapter in Thyroid Manager about Riedel's was co-authored by

John Lazarus, MA, MD, FRCP, FRCOG, FACE

Professor of Clinical Endocrinology Cardiff School of Medicine Cardiff, Wales, UK

(and Dr James Hennessey, M.D.)

thyroidmanager.org/chapter/...

So if you have any problem with your current doctors, you could perhaps suggest they contact Prof. Lazarus? Obviously that might not go down very well - so be careful how you put it to them.

[LadyS]

Hi I was diagnosed with hashimoto initially and then it was confirmed as riedels. I have had a sub total Thyroidectomy as it was close to my voice box and couldn't all be removed. I also had a 2.5 cm mass on the upper left chest all this in 2013.

I went back to the doctors with a pain where the mass was and after X-rays and ct scan with contrast it has grown from the neck and into the upper mediastum encasing the aortic arch and the vessels ( the doctors words not mine :))

I am now waiting for an ultrasound biopsy as they are looking for lymphoma which is scaring the hell out of me!