Hi, I wonder if someone could please advise me on the following.
When I was 10 years old I got diagnosed with underactive and enlarged thyroid.
I was on medication for 11 years then I moved countries and was told by GP there was nothing wrong with my thyroid except being enlarged, it worked normally according to the blood tests.
I’ve put up with the fatigue,cold,constipation,brain fog for more than 10years.
In the last 5 months I’ve had swallowing issues, choking on food and burning mouth syndrome(my mouth and tongue are constantly burning).
I had blood tests and again all coming back normal. I wasn’t offered scan or ultrasound on my neck , no ENT.
I was told I had acid reflux and I’ve been on omeprazole for over a month but I still have all the symptoms.
I never smoked,I don’t drink alcohol.
I was told in the past that each country has different guidelines when to start treating someone for thyroid issues.
I’m now wondering whether I should pay privately for more detailed blood test and a scan on my neck?
Sorry it’s so long and thanks for reading.
Written by
Penelope1978
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Is seeing an endo in your home country a possibility? That’s what I have been doing after being let down by the NHS. I had to have my first appointment in person but thereafter, I have been having a mixture of online and face-to-face appointments. I am lucky that si far levothyroxine has worked for me and it is so cheap to buy in my home country too. My consultations cost €60 and are much more affordable.
I really cannot fathom the wait-and-see approach taken in the U.K. I was even told by my NHS endo that Hashi meant my thyroid would slowly deteriorate but simultaneously told I cannot be treated before things get worse...
Sounds like a very ignorant GP ...of course results look “normal” on levothyroxine
Now your symptoms all scream hypothyroidism
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I’m going to take a punt and suggest you’ve had a thyroid issue all along and that you’ve had a numpty doctor who’s only looked at your TSH level and decided you’re fine. Which is absolutely the wrong test to be looking at.
The acid reflux will almost certainly be related to this. It’s absolutely classic too for doctors to decide you have anxiety/stress instead of a thyroid disorder. It sometimes feels borderline criminal that they can get away with this.
If you can’t get the blood tests you need from your doctor, I’d strongly recommend going down the private blood test route. You shouldn’t have to—but you’re a long way from being the first person here who’s had to gather evidence at their own expense before getting a doctor to take notice.
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