I posted here several weeks ago as I had been taken off Levothyroxine after high t4 results. I have half a thyroid as had a benign growth.
I paid for a blood test and after a couple of issues with the finger prick tests, I got a nurse friend to take my bloods. I got the results this morning and I'm still hyper with no medication and the levels are higher than before I was taken off Levothyroxine.
All my vitamin levels are within range as is my iron.
I've actually put on weight since I came off meds!
Totally confused now as to what is going wrong. I'm bit moody, some anxiousness and depression but nothing overwhelming. Not having heart palpitations either. Just feel bit spaced out and out of focus a bit but not all the time.
Screenshot of results above.
Any ideas of what I should discuss with my GP would be appreciated. I will be forwarding the info to her today.
Cheers
Sue
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Battlecat
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It is quite common for people with hypothyroidism to have fluctuations in their results that take their TSH below range and their Free T4 and Free T3 above range.
When people are hyperthyroid their Free T4 could easily go up to 80 and their Free T3 up to 50.
Your results look more like those of someone who has Hashimoto's Thyroiditis or (less likely) Ord's Thyroiditis. The NHS refers to both of those as "Autoimmune Thyroid Disease", rather than Hashi's or Ord's like patients do.
Both of the above conditions cause damage to the thyroid. When the cells of the thyroid are damaged or killed off by the immune system any thyroid hormones within the damaged or killed thyroid cells are released into the body/bloodstream. This causes the Free T4 and Free T3 to rise, and then the TSH drops.
This is often referred to on the forum as a "hyper swing". It's temporary - it could last a day, a week, a month, or longer, but each time one of these hyper swings occurs it is evidence that the thyroid is under attack and is getting a bit more damaged. Each time there is damage the patient becomes a little bit more hypothyroid. These attacks can occur intermittently for years.
The levels of hormones from an attack by the immune system are usually much lower than they would be in hyperthyroidism.
Over time the thyroid becomes so damaged that it can't produce enough thyroid hormones to keep the patient well and they have permanent hypothyroidism.
When someone has results like yours it is a good idea to come off thyroid hormones, and only restart them when you get the first symptoms of hypothyroidism coming back. Because, sadly, they will come back.
Hi, I came off meds completely nearly 3 months ago, results have been in low 20's in January and teens briefly in April. So not sure how this corresponds with the fluctuations as it's consistently high T4 low serum?
Fluctuation in this case doesn't mean going up and down like a yoyo. It means that for ages you can have a certain level of FT4/3, on the same dose, then suddenly a sharp rise for no apparent reason. Except the reason is the immune system attacking the thyroid. And those levels can stay high for an indefinite period - maybe weeks, maybe months, could even be more than a year. Then, they will slowly drop again. If your results were lower in April than in January, that's a fluctuation.
TSH is a pituitary hormone which signal thyroid to produce. Usually low mean “slow down” FT4 & FT3 are too high & rising TSH occurs for the opposite. They are inverse. Although TSH isn’t fool proof, sometimes it doesn’t reflect as “normal”
You previously had a hemithyroidectomy, was that due to growth or were you hyper previously before surgery?
Your TPO & TG antibodies are negative in this recent test, have they always been negative? Have TRab or TSI antibodies been tested.
If autoimmune is negative you may have autonomously functioning nodule which is what you might have had before?
Nodules tend to show as more stable elevated levels compared to very high / fluctuating levels.
I gained weight too with similar FT4 & FT3 levels, I think it’s a combination of increased appetite and poor energy levels.
An ultrasound can detect nodules but not function you may need a thyroid uptake scan.
If FT4 & FT3 remain elevated you’ll need to introduce an antithyroid.
I didn't have hypothyroidism prior to the growth on my thyroid being removed. I was only flagged as being hypo a few years later when I was tested as I had double vision. I had an mri scan on my eyes/optic nerve that was okay and I was diagnosed with astigmatism that didn't self adjust.
As far as I'm aware I've never had my antibodies tested till I paid for the Blue Horizon test so I have nothing to compare it with.
My initial levels when I was put on Levothyroxine weren't especially out of range, my GP asked endocrinology to have a look and it was them that said I should take Levothyroxine.
Not yet heard back from my GP since I sent the results to her.
I'd been taking Levothyroxine since November 2020, I'd had B12 deficiency as well in the September 2020 but that resolved ok once I'd taken supplements for a few months.
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