In Feb 2023 I asked my GP for help as I’d noticed my weight was dropping, had temperature fluctuations and I thought the odd heart palpitation. Tests showed my TSH was 0.1 but my T3 and T4 were within normal range. In October I finally saw an Endocrinologist who arranged an ultrasound scan, bloods and a Dexterity scan.
I had my ultrasound scan and think the radiologist said things looked ok. However a month later, I have now been called for a Thyroid uptake scan. My blood tests also show my results are still the same TSH 0.1.
I’m worried what does this mean and what are they looking for.
Update: They confirm my ultrasound shows I do have a nodule , left lobular , which is why I am now having the Thyroid uptake scan and then an appointment to see ENT consultant
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Uptake scan visually show the function throughout thyroid. (Ultrasounds don’t) The uptake image should clearly explain if the thyroid is over active throughout or if the is a specific area eg a “hot” or toxic nodule over producing.
The ultrasound may have detected a nodule but not how it function. So the doctors are arranging test to see how thyroid functions & what causing “hyper” levels.
Have you had antibodies tested?
TSI & TRab are usually elevated with Graves hyper. but you’d expect over range FT4 & FT3.
Do you have actual blood test result & a copy of scan report? Always recommend you obtain copies & track what’s going on.
Low TSH usually occurs when thyroid level “too high”. The TSH is a pituitary hormone which signal the thyroid. The sign is your pituitary “thinks” your levels are too high & is signalling for your thyroid to lower / stop producing.
When the FT4 & FT3 (thyroid hormones) are in range it may mean this issue is with the signal (pituitary) not the thyroid or it may just mean your FT4 & FT3 are fluctuating and the TSH hasn’t caught up.
Your symptoms are in keeping with hyper, what are your current FT4 & FT3 levels, are they being monitored? Have dr suggested any treatment as yet?
Have folate, ferritin, B12 & vitamin D been tested.
Please can you post recent lab results including the reference ranges.
"In range" doesn't tell us very much.
I'm assuming that you're not taking thyroid medication because the TSH test is only reliable before medication is initiated... as a diagnostic for thyroid disease
Your TSH is low so they are most likely checking for an overactive thyroid/hyperthyroidism
SlowDragon has given you the following advice reading it again may ease your concerns
The TSH test is only reliable if your pituitary is functioning normally. But not all pituitaries do.
Also, what time of day was the blood draw for this test? Because TSH fluctuates throughout the day, being highest before 9 am and at its lowest around midday.
I’ve given up, all I got was tsh normal, no further action. I asked for a full panel and this is all they ever do. I’ve now put in a complaint as that is all I have had for 9 years. Probably got some permanent damage but what can you do🥺.
The consultant letter suggests now sub-clinical hypothyroidism
But I have been booked to see an ENT consultant at the end of February and mentions may need a tissue sample which assume is a biopsy.
Now I’m really worrying. I think anxiety has been a symptom of all of my problems. But now it’s very much heightened and as a 52 year old who smoked in her twenties and early thirties.
I really don't understand why they insist on sending hypo patients to ENT. ENT doctors know nothing about thyroid - been there, done that, he told me there was absolutely nothing wrong with me when I actually had Hashi's hypo!
And, that's what you have: Hashi's - as shown by high antibodies - and you are hypo. Although no doctor is ever going to admit it until your TSH goes at least over-range, and preferably over 10.
Do you have the ranges, by the way? Results without ranges don't mean much. But it probably has nothing to do with your smoking habits. I started smoking at 14 - it was the thing to do at that time. But, I've more than likely been hypo since I was about 8, it's just that nobody ever thought to do blood tests until I was 55! And, there is a theory that habits/addictions like smoking are the result of problems like hypothyroidism because they make you feel better, when without them you feel pretty rough. And, what's more, there was one piece of research that found that nicotine increases T3 levels in the brain - which has got to help! However, that research has disappeared without a trace and I regret to say I didn't save it.
So, don't beat yourself up about the smoking. And stop worrying! a) it won't help anything, and b) having Hashi's/hypo is far from the end of the world.
No idea why they were talking about a tissue sample, though. Was it just a standard letter?
It has been and still is confusing. No wonder so many of us don’t understand all of this.
I have been advised now that I have a left lobular nodule on my thyroid. I sense this is why I have been booked an appointment for a Thyroid uptake scan and to then see an ENT consultant.
It’s strange that my TSH has gone from 0.1 to 4.73 , originally I’d sensed this could be Graves.
Well, it's not that confusing once you get used to it.
So, the uptake scan will be to see if the nodule is producing its own hormone. But that doesn't happen very often so don't worry about it.
It's not in the least strange that your TSH has gone from 0.1 to 4.73, because you have Hashi's.
Hashi's is an autoimmune disease where the immune system slowly destroys the thyroid mistaking it for the enemy.
During the attacks, the dying cells deposit their stock of hormone into the blood, causing the levels of FT4 and/or FT3 to rise sharply, which in turn cause the TSH to drop.
But, the FT4/3 levels never go as high as they would with Graves'. And with Graves', the TSH would be undetectable - 0.1 is not low enough to be Graves'.
Unfortunately, no matter how many cases of Hashi's doctors see - and it's the most common cause of hypo in the West - they never quite undestand how it works, and get all confused and panicky. Sigh.
So, highly unlikely that your nodule is producing its own hormone. Nodules are pretty common - I have lots! - and rarely anything to worry about. Let us know how you get on.
I have received this letter today. I am now more confused than before and don’t understand the terminology used regards the nodule. I now have to wait till 28th Feb to see an ENT consultant
Should I wait this long when they mention the term sinister.
This is the letter with regards to the results from the tests and investigations arranged from the endocrine clinic. I can see that you had your thyroid function tests done on the 2nd November 2023. Your TSH receptor antibodies are >1 and this is negative. Your thyroid function tests show a TSH of 4.73 with a Free T4 of 8.8 and a Free T3 of 5.1. This suggests a new picture of subclinical hypothyroidism which is exactly the opposite of what it had been before. This is indicative of borderline underactive test result.
Your TPO antibodies were raised at 633. This suggests this could be possibly autoimmune where the immune system works against your thyroid gland.
Your 25-hydroxy vitamin D levels are 74 which is reassuring. This is normal and in this regard I will arrange a bone density scan to screen for osteoporosis.
I can see that you have also had the ultrasound of your thyroid which suggests well-defined isoechoic nodule with hypochoic halo seen in the left lobe measuring about 1cm which was graded as BTAU3. It appears wider than taller with no cystic degeneration of calcification and no increased vascularity. In conclusion, you have a nodule on the left side of the thyroid lobe which is graded as U3 and in this regard I will refer you to ENT as you may need a pinch of tissue taken and sent for testing for this to rule out any other sinister causes.
I'd recommend reposting this as a new post as this board is busy and moves fast which will mean more people will see a new post.
Positive antibodies TPO mean that you have Hashimoto's which can often start as a brief period of hyperthyroidism.
To be diagnosed and treated on the NHS with hypothyroidism you need 2 above range TSH results 3 months apart.
Always test at 9am or earlier when TSH is highest, fasting that morning, only drinking water before the test. Stop any biotin containing supplements 4-7 days before the test.
U3 is indeterminate and if under 1 cm in size should have a repeat ultrasound in 6 months to assess for growth while those over 1 cm should have a fine needle aspiration cytology. U3 nodules over 1 cm should be referred on the 2-week wait rule while those under 1 cm could be managed with a repeat ultrasound or referred on the 2-week wait rule.
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