It's all in my head, apparently.

[Mummybear0213]

I've just got back from an appointment with ENT (my GP initially referred me for a 2ww head + neck appointment but that was declined and they changed it to ENT).

The doctor spoke to me like I was a 5 year old who'd scraped their knee. Basically told me nothing is wrong, my anxiety is probably causing my throat to close up and that's why it sometimes feels like something is blocking it, and I should stop reading Google if that's what I've been doing.

I mean, I have no words. I felt so small and stupid. She stuck a camera down my nose to check my throat and said it looks fine. Thyroid feels normal. She said just go with what your GP says 🤦🏻‍♀️

I feel like hitting my head off a wall.

BUT, she has agreed to get me an ultrasound scan but I'm assuming that will probably show nothing too.

I'm seriously doubting myself now and wondering is it all in my head??

[J972]

Hello,

I’m sorry you had such an underwhelming experience at the appointment. Sadly, it’s all too familiar a tale, particularly it would seem where thyroid conditions are concerned. Although I’ve been on the receiving end of patronising and dismissive ultrasound drs and rheumatologists too…..

Looking back at some of your previous posts it seems pretty obvious that you have a thyroid problem. Your elevated TSH levels, low in range FT readings and elevated TPO antibodies suggest this. This latter metric is indicative of Hashimoto’s, which many of us on the forum have. Coupled of course with your all important symptoms. Unfortunately the NHS likes to see a TSH above 10 and/or a below range FT reading before they’ll consider medicating. So what to do? Some folk go down the route of seeking out a private endo using the list of recommended practitioners available from thyroid UK. Some - myself included - choose to self treat. You might want to consider the former route first, if that’s an option for you. Otherwise you are playing the waiting game where you need to become progressively more unwell in order for the NHS to finally recognise that you have a problem.

Secondly I would say that your core vitamins and minerals need improving. It is extremely common for those with an under active thyroid to have low in range ferritin, folate, B12 and vitamin D. Lots of good advice on the forum about how to go about improving these.

Have you been tested for celiacs? If you have and tested negative you might want to consider going gluten free. As I’ve learned from this amazing forum, those with Hashimoto’s very often benefit from excluding gluten from their diets, even if they don’t have a confirmed allergy to it.

J9 🙌🏼

[Mummybear0213 in reply to J972]

Honestly thank you for this reply. How do people self treat? Going private is my last resort to be honest, it's so expensive just for a consultation, I can't really afford spending that sort of money but if my health starts deteriorating anymore than it is I might have no choice if the GP doesn't help me out.

I admit I need to read through my old posts and the vitamin info that's been shared on them, it seems a bit of a minefield when I've looked for them online though I have no idea what brand or dosage I should go for.

I have read a little bit on Hashis and gluten and considering getting myself tested, my husband will be over the moon if I go gluten free, he thinks white bread is the devil 😂

[J972 in reply to Mummybear0213]

Good morning,

Regarding self treating: it’s literally a case of sourcing medication without prescription. There are a couple of important things to consider in this regard: checking the legitimacy of sources (scamming can happen) and being prepared to self test levels using private finger prick blood tests.

For now it might be better to focus on your core vitamins and minerals.

Unfortunately, having hypothyroidism brings with it the need to become incredibly knowledgeable about your condition. And that means reading, reading and reading some more about it. Fortunately you’re in the perfect place in which to do that, so you’re already off to a great start 👌

[Lalatoot]

Mummybear. One of my symptoms when I was undermedicated and thyroid hormone levels were low was throat swelling and loss of voice . This was not accepted as a hypo symptom by neither the endo or ent. Camera down same as you.

Strangely enough now I'm properly medicated it no longer occurs. Seems like proof to me!

One of the problems of hypo symptoms is that they seem so bizarre to non hypos that they don't believe the symptom and hypo are connected. For example during the 4 years I was wrongly medicated I had no earwax . That's now come back.

[humanbean]

I would say that if you have a male partner, husband, or friend that you would be prepared to take to doctor appointments with you it might help. Doctors are more polite when they have a male witness in the room.

I've been taking my husband to doctor appointments for several years, and would only go alone these days if the problem I was seeing a doctor about was clearly visible and couldn't be doubted.

[Mummybear0213 in reply to humanbean]

Thanks for the advice, I'll keep that in mind, may get my husband to tag along to my next appointment!

[Batty1]

Wow and not surprised Doctors are monsters in white coats…. Don’t doubt yourself you feel what you feel and just because she said your thyroid felt fine doesn’t mean make it true…. I heard this very same thing for years eventually my world did come crashing down and was diagnosed with thyroid cancer (not saying this is your problem) just saying don’t doubt yourself you know your body better then any doctor or test!

[Mummybear0213 in reply to Batty1]

I'm so sorry you went through that, it's despicable that you weren't taken seriously. Can I ask, I'm assuming you have had an ultrasound scan on your thyroid, what can I expect when my appointment does come around? What can/can't they pick up from that?

[Batty1 in reply to Mummybear0213]

If you get the thyroid scan and it shows you have nodules you should demand a fine needle biopsy and don’t take no for an answer. I listened to ENT too much and my swallowing and panic attacks were me being over dramatic …. I did this for a long time had trouble swallowing which led to panic attacks that eventually ruled my life and the final straw was the eye popping experience I had …. It actually was my Eye Doctor who said I had thyroid problems ENT which is the only doctor my primary doctor would send me too kept saying you have nodules but they are benign…. No they were not!

[Mummybear0213 in reply to Batty1]

That's awful, how are you doing now? Thank you so much for the advice I'll definitely keep this in mind when the time comes.

I've had this feeling in my throat for quite a while now, I remember 2 years ago saying to my husband I thought COVID had left a lasting affect on my breathing but actually that same feeling is still there, on the one side of my neck.

I'm still reeling from the doctor's comments.

[Batty1 in reply to Mummybear0213]

I guess Im use to ignorant comments from doctors… so I'm not shocked really and you shouldn’t be either … anyway get the thyroid scan and see what it shows if you have nodules ask for FNB even if they tell you they are small and don’t need FNB demand it anyway….. Im as good as Im ever going to be the thyroidectomy and treatment afterwards has been a medical mess for me.

[birkie]

Honestly these so called professional people 🤦‍♀️ let me say, my gp left me for over 12 months with what turned out to be hyperthyroidism (graves thyrotoxicosis).He first noted all my symptoms were menupausal, eventho I told him that I felt like I was choking, and when I'm talking my throat aches 🤦‍♀️

He refused any blood tests, only the basics which did not contain thyroid bloods 😠

I went back and forth, doubting myself😞 at the time I actually thought I was going mad, or actually dying 😢.

I looked up my symptoms and it kept saying over active thyroid, when I questioned my gp about this possibility being why I've got these symptoms he looked at me stood up went round my back and examined my neck, in a very angry manner, saying "you don't have a goiter so you have no thyroid problem it's your menupausal state now just deal with it".

I came out thinking I'm a fraud, a diva, an attention seeker 😞

Some months later I collapsed and my son took me to the surgery where a new gp took one look at me and said "you have an overactive thyroid"

No s##t sherlock!!! ... I told her, I knew it was, but gp I've been seeing says its my menupausal state, besides I don't have a goiter!!

Not all thyroid sufferers have goiters she told me.

So saying there is nothing wrong with your throat is bullcrap, I never had a goiter, but my thyroid took up in both lobes on the uptake scan (graves) full thyroidectomy in 2019... Thanks to my ill-informed gp 😠😠😠