Update from US: So I posted about 3 months ago... - Thyroid UK

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Update from US

lisahammock profile image
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So I posted about 3 months ago querying whether or not thyroid nodules should always be biopsied as some showed up on an US I had some years ago.

My dr sent me for another US which finally happened last Friday. The dr doing the US told me that he could see several nodules as per the report from my previous US and that my thyroid looks 'very unusual' in its make up. He suggested thyroiditis (more on this in a mo). When I asked him about indications for biopsy he said that usually he would only recommend a biopsy if there were only one nodule, therefore suspicious looking. As I have several he didn't think they should be biopsied. Is this reasonable? I have no idea but it does not seem correct according to various sources I have read.

My story goes back 15 years in total when I developed hypothyroid symptoms. My results always came back borderline or never out enough for them to treat me. Eventually I was treated on my symptoms and things did improve.

Now I am getting tired again and literally falling asleep uncontrollably. I can feel pressure in my neck, although nothing seems to be protruding on the outside. I constantly feel like someone has their hands around my throat. Then there is the pain. Like a sharp localised pain in my neck. I can almost pinpoint the location. It seems to affect my ears in a weird way too? Like a little pain although not unbearable.

I have swollen glands behind my ears too. Swallowing I am very aware of what feels like something pressing on the front of my neck (a bit like trying to swallow upside down I guess?) and when I exercise I struggle to get a good breath. Sometimes this happens when I am resting too. It's a bit like my lungs feel like they want to expand fully but I can't get the breath down through my neck.

After the first US I pretty much forgot about it, so I know these feelings are not psychological: I started looking into it again because I was fed up of feeling like this and the pain is getting worse. By no means unbearable but irritating and frustrating.

I'm really worried I'm going to be fobbed off again. My last bloods came back fine apparently and I am pretty certain the dr will read the US report and do nothing more to help me feel better based on this dr's reports.

Any comments? I don't really know what's going on in there but I know something is.

Thanks for reading.

Lisa

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lisahammock
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debjs profile image
debjs

Hi, I am sure there are others with more knowledge than me but my experience sounds similar to yours. I had multiple nodules but one of them was larger than the others and so that was biopsied several times over the years and then had a TT as it grew more. I am not sure what the guidelines are or even if there are any but suspect it varies from Dr to Dr.

I had the symptoms you mention and although the direct pain resolved after surgery the other symptoms became worse and for me seem to be related more to being hypothyroid. The surgeon said he could not understand why I had not been started on any replacement. I wonder if your dose needs increasing? I have learnt that it is not enough just to be told results are ok as I am very unwell with even small changes in any of my blood results. the endocrinologist I am seeing now says some people need to have a supressed TSH to be well and control symptoms and it says this in Dr Toft's book 'Understanding Thyroid Disorders'.

Perhaps it would be worth asking what your last blood results were and if only TSH was tested ask for T4 levels as well. Also I am sure you have read about all the vitamins etc. which need to be optimal rather than just in range for thyroid replacement to be fully effective. It is hard to question but I really wish I had done so sooner.

lisahammock profile image
lisahammock

Hi. Thanks for this. Just back from hols and gp wants a phone consult with me. Not sure what this means but hopefully a specialist referral is in the offing.

What is your ref to vits? My last results were apparently all ok still so I doubt they will treat.

Lisa

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