I've had a whole raft of tests but nothing is showing as significantly out of range. GP is now referring to Rapid Investigation Unit to get their view. She referred to NHS endo but they rejected the referral as they don't think that I have transient hyperthyroid.
I've got a private endo appointment in March but I'm worried about holding out for that and then finding that it isn't thyroid related.
I'm not on any thyroid meds, no diagnosis and unsure what the results are showing.
These are my thyroid results from 2016 onwards - my thyroid was only tested once the thyroid goitre appeared in 2016 so I have no test from prior to that.
10/11/16 TSH 0.46 (0.2- 4.5) FT4 13 (9-24.0)
10/11/16 - Thyroid goitre – ultrasound – several, partly cystic ovoid nodules can be noted in both, slightly swollen thyroid lobes and the istmus (the largest measures 1.5cm in the left lobe) showing moderate peripheral halo and perinodular vascularity in keeping with multinodular goitre. No evidence of adjacent lymphadenopathy
7/6/17 TSH 0.54 (0.2-4.5) FT4 14.9 (9-24.0)
15/10/19 TSH – 0.46 (0.2-4.5)
26/2/21 TSH 0.33 (0.35-4.94) – borderline, need to repeat – I didn't follow up, my Dad was really poorly.
20/10/23 TSH 0.38 (0.27-4.2)
3/9/24 TSH 0.27 (0.27-4.2)
23/9/24 FT4 17.0 (12.0-22.0)
November 2024 – US of thyroid goitre, not much detail, nodular goitre
8/11/24 TSH 0.53 (0.27-4.2) FT4 19.4 (12.0-22.0)
25/11/24 TSH 0.32 mlU/L (0.27-4.20) FT3 4.1 pmol/L (3.1-6.8), FT4 18.3/L (12.0-22.0) (this seems to be creeping up)
I'm incredibly fatigued, have elevated heart rate with episodes of tachicardia (c. 107 so not silly high), some tremor. Temperature tolerance varies, mainly I am cold rather than hot. I dropped 4/5kg over the summer without trying and can now eat more than usual without gaining weight.
As per other thread Vitamin D and Folate were low (but in range) but I'm supplementing as recommended since the start of December.
I can now see that my Folate was also low October 2019 6.1 (levels above 5.4 do not suggest folate deficiency) - no actual range shown. B12 was 492 (180-910) in 2019 so maybe that is signifant and the supplementing will make a difference in time?
It seems apparent to me that my issues are thyroid related given the goitre but is it realistic that this could be "brewing" for 8 years? (I'm 55 now, female, perimenopausal) but with levels that are broadly consistent?
Could it be a "straightforward" goitre that is producing thyroid hormone hence the low TSH?
I really don't get what we're looking at.?
Thanks
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A goitre is a swollen thyroid, it's not something separate. So, yes, your goitre will be producing hormone, that's what a thyroid is supposed to do.
I haven't looked at your other posts to see the blood tests, but this looks like Hashi's to me. Have you had both Hashi's antibodies tested?
Were all the blood draws for these tests at the same time of day? Early morning? Because the TSH doesn't seem to change no matter what the FT4 level. So, could be also be dealing with a sluggish pituitary.
Who suggested transient hyperthyroidism? There's nothing remotely hyper in these results.
As for comparing symptoms to blood test results, there's no way you can do that without testing the FT3. It's low T3 that causes the bulk of symptoms, T4 possibly a little but the TSH not at all. And there's no way that you can tell your FT3 level by testing the TSH and the FT4. Even with your latest high-ish FT4 your FT3 could still be rock bottom. So, seems to me that the next step ought to be getting full thyroid testing privately - which you should do before seeing your private endo.
Could thyroid problems have been brewing for 8 years? If it's Hashi's, yes, they most certainly could.
Looks like your TPO & TG antibodies were negative on a previous post and while this doesn’t categorically rule out autoimmune you have had ultrasound scan showing nodules & mention of a multi nodular goitre. This might be why doctors are saying they don’t think the issue is transient.
A hot or toxic nodule can cause elevated thyroid levels without autoimmune.
An ultrasound doesn’t show function throughout thyroid but if any of the nodules are over producing this can often show as gradually dropping TSH, followed by Rising FT3 followed by FT4. Your last result showed an increasing FT4 while FT3 was lower, it might be you other illness & low nutrients has causes low FT3, but that is guesswork.
Doctors look at TSH and treat with an antithyroid to lower FT4 & FT3. to see if TSH rise, but really it’s the FT4 or FT3 which need to be reduced once it’s consistently over range. Low TSH should be treated by lowering in range FT4 / FT3. TSH is unreliable, if you had periods of hyper previously the TSH can remain low for a prolonged time.
You may need an uptake scan which does show where thyroid is functioning & the pattern images will highlight if nodules are over producing.
Thank you PurpleNails 🙏 this is what I was thinking re the production of hormone and thyroid uptake test.
I guess if the nodules are over producing and have been since 2016, it would explain why I feel the way I do and have done consistently since then. Rather than it being Hashis or similar where I perhaps might have seen a bigger variation or deterioration in TSH levels?
The 0.27 test this year was at the point the goitre had reappeared which I guess really means became more enlarged and prominent rather than reappeared as whilst I wasn't physically aware of it for a few years I imagine the nodules were still there. That might explain why it is the lowest reading.
Do you think it's significant that T4 seems to be creeping up?
I only have one T3 which is from the private tests. I'll repeat the thyroid panel privately at the end of February.
Autoimmune tends to cause more obvious symptoms & you see fluctuations. I know from my own nodule it’s tends to be gradual to the extent it can be unnoticeable, you can compensate for longer.
My FT3 was disproportionately higher than FT4 but we are all individuals with other factors affecting levels.
I think you may need more monitoring with full thyroid testing until you can really understand what’s is going on.
I have a multi-nodular goitre and was diagnosed with Graves’ disease 15 years ago. It looks to me like your goitre is affecting your thyroid hormone production. Mine is a nuisance and I have no control over what it does. At the moment I am going through a slight hyper stage so I am trying to ride it out which is not advisable but I have no alternative. If I go back to see a n endocrinologist he will probably advise me to have it removed or RAI which I don’t want. I rather live with the symptoms which at the moment are not too bad. I am unable to switch my brain off and my temper is terrible. My poor family are baring the brunt of it. I have Graves’ rage which I am trying desperately to keep a lid on it. The upside is boundless energy and I have wrapped all my presents weeks ago. Dare I say I actually enjoy being slightly over active. However I know this won’t last and I will burn out eventually.
The only thing I can suggest is you make sure all your vitamins are optimal. Try to keep as healthy as you can and have regular thyroid function tests. Unfortunately you won’t be treated unless your TSH becomes suppressed or it goes over range to 10. Yes this is awful because you are probably experiencing symptoms already. This is what I think but others might disagree with me.
This site has helped me cope with this horrible dusease nobody understands what it is like to have a malfunctioning thyroid. This little gland controls your metabolism and I have lost my once thick curly hair, my eyebrows are non existent I now draw them on. My nails are lifting off their beds as well. Some of the symptoms I can cope with and I have been just trying to live my life as best I can. You can read my story on my page if you are interested
Thank you Lora, your insight is really helpful. I'm sorry you've had such a difficult time. I kind of hoped that my TSH was dropping below range in August and maybe that would finally mean someone would look at it but it has crept up marginally again.
I'm definitely working on the vitamins and hoping that this might make a difference 🤞
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