Hello, hypothyroid here, currently taking 225mg levothyroxine daily.
Visited the Dr (NHS) last week for a few ongoing issues, including a lump in my neck (just right of neck centre) and was seen primarily by a student Dr who’s findings were then discussed/assessed with GP. Very convinced it’s a goitre and asked if I’d had any thyroid related antibody tests as she couldn’t find any in my records.
Showed her the results from the last one I had done privately in 2022, which shows thyroid peroxidase antibodies (TPOAb) at 383.1kIU/L. When the GP came in to assess, the student suggested testing the antibodies again and asked how she could find my other thyroid results in the system as she wanted to check T3 & T4 etc. to which the regular Dr turned around and said they don’t test for any of those after diagnosis, and that they prescribe going from TSH levels only.
It may just be me, but from all the info I’ve read over the years (diagnosed 12 years ago at age 14) this just doesn’t sound right?
Also, the GP claimed she couldn’t feel the lump in my neck, and that it felt the same both sides, yet both myself, my family & the student Dr can feel it. It’s quite firm and obvious when running fingers over my neck.
Any advice to move forward with is appreciated ☺️
Written by
Luce97
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In the view of most of us here, it certainly isn't right. Nor acceptable. But it is quite usual. The combination of TSH-only testsing and Levothyroxine-only prescribing is all too common.
I agree with you - I'd want you to have FT4, FT3 TPOab and TGab and an ultrasound scan.
225 micrograms is quite a high dose. But, if that is what you need, then keep to it.
Are you in a position where you can afford another private test? If so, choose one that has all of these - plus anything else you want and can afford. Get that done and come back with the results.
No a lump like that definitely isn’t right. Make sure you follow it up to find out exactly what it is. Don’t accept ‘it’s probably just a cyst’ or pay any attention to your doctor who can’t feel it! Make sure you know for sure exactly what it is.
thyroiduk.org/testing/priva.... This is the one to choose, Luce because from the sound of your (grandstanding with a student GP and showing her ignorance, to boot) GP, she would dismiss the finding of any private test. You can then give your version of, "Listen, be'ach, Monitor My Health tests are carried out at the Royal Devon and Exeter NHS Foundation Trust laboratory., so it ain't so private now, innit? Pfft"
😘 Shame you can't consult the student, sounds as though he's more au fait with your condition than your GP. 'They don’t test for any of those after diagnosis, and that they prescribe going from TSH levels only. ' Oh really, doctor? Jog on, bint.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Not being able to feel a goitre is not a cross off going forward. And your doctor should know that.
I had a thyroid that was twice the normal size, and two of the five nodules were just under four cm. So nuttin' small going on there!
And a GP could not find it (not my GP) nor could an ENT assistant not long before surgery. That GP - Godsend, she said "I can not feel it, but I am going to go with what you're feeling and book an ultrasound.".
The ENT(surgeon) & endocrinologist later in my care had no issue feeling it.
So see I was 50/50! Has no meaning.
Do you have any symptoms a la breathing or swallowing?
Try this -
Raise your arms over your head and then lower your chin to your chest. And talk.
You should be able to breathe and talk with ease in this position. You will know right away.
I could instantly not breathe and words sounded like the devil. I was so stupid I actually forgot for way too many seconds that I could raise my chin and/or lower my arms and breathe again.🤣🤩
It is a physical test to see if a multinodular goitre is sitting in that space and blocking you off, so to speak.
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All the best to you.
I am also on a high amount of thyroid hormones. Did they mention about not absorbing well?
Simply curious, obviously one needs what they need.
My experience with the Nhs doctors and consultants is that they ONLY look at the TSH. This is hard to understand as there are studies and patient evidence out there that shows this is a poor approach to diagnosing and treating thyroid disease. Also, the ranges around the country vary considerably. If asked about that you get some cock and bull story about different machines, which seems at best illogical. When you put tonic in your gin, however you measure it the same amount of tonic is present - unless the measuring is faulty, of course.
It was interesting that in your story the student doctor said and did what she did. Has she not been programmed yet?
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