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.
My GP liased with endocrinology as I hadn't heard back on the referral and in Sept I was put on 20mg Carbimazole once daily. I initially took this in the morning but was getting dizzy spells so I changed to night time. I had a blood test in October that showed my levels were in range and my GP had basically written, 'in range, no further action'.
I messaged the practice on Patches and asked should I not have another rest in 6-8 weeks as I was still on Carbimazole?
I was given a pharmacy appt and he agreed I needed to retest.
By November I still hadn't heard back from Endocrinology and had to chase up an appt.
In the meantime I got a date for full knee replacement on 17th Dec. I had the thyroid test as part of my pre-op on 23rd November. I was unable to see the results.
On 11 Dec I finally had a tel appt with Endocrinology doctor, the Dr said I was hypo and needed to reduce the carbimazole to 10mg, and engage with the endo nurse and be monitored. I was told I needed a blood test in 6-8 weeks and an appt.
I then got a letter 11 days after my surgery saying that I should have a blood test 10 days post op as surgery can cause changes and the carbimazole might need adjusting. I wasn't able to have the blood test till 3rd Jan. I think I'm hypo still, but I've not been able to get anyone in endo to review the results. I'm still taking 10mg carbimazole. I've been given another tel appt with an endo nurse for 3rd Feb. I've queried that I think I shoukd have another blood test before that appt too?
Sorry it's war and peace, just struggling with how hard it is to get information.
Results below
3/9/24
TSh 0.036 range 0.57-3.6
T4 13.8 range 7.9 to 14.0
T3 5.1 3.1 to 6.8
25/10/24
Tsh 1.849
T4 10.1
T3 not tested
23/11 results not known yet but told hypo
3/1/25
Tsh 8.603
T4 9.2
T3 5.4
I feel hypo, itchy arms, shivers/chills and fatigue.
Any advice on how to progress this much appreciated?
always start a new post when adding a new update. Often get missed otherwise.
your last TSH is quite high and FT4 & FT3 low in range. Hypo symptoms makes sense.
Contact dr, say your symptoms difficult & TSH being high means your carbimazole should be lowers. They manufacture 5mg. Some split pills using pill cutter. Many like to take part pill every day, some take low dose every other day.
Stoping & restarting isn’t ideal (doctors sometimes suggest eg stop for 2 weeks & restart on lower dose) but this can cause a flux in symptoms and restarting carbimazole can cause new side effects that didn’t occur before.
Thank you PurpleNails I'll hopefully see endocrinology soon. Yesterday I applied for the repeat prescription of Carbimazole, requesting the 10mg as directed from December. Instead of 10mg my gp has prescribed 5mg. I've not had an explanation for that, she might have been able to see the hospital results.
I'll work on the basis that you've suggested and her prescription and take 5mg as I definitely feel hypo with aching joints etc. I've already split the 20mgs into 10mg, but think I'll able to cut them again until the prescription is available for me to collect.
I think being hypo hasn't helped with post op recovery. It's felt harder and I've struggled more with fatigue. But Winter op as opposed to Spring probably makes a big difference too.
Thanks for your help. Next time I'll remember to do a new post as well.
Your results show that you became hypothyroid in around October / November time -
I don't understand why the AT drug even needs to keep being prescribed ?
When metabolism runs too fast as in hyper type symptoms - or too slow as in hypo type symptoms - the body struggles to extract key nutrients through food no matter how well and clean you eat -
and no thyroid hormone replacement works well until your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels -
so please ask your doctor to run the above and we can advise where these need to sit so as not to compromise your recovery further than necessary.
And yes, start a new post with any new information so all forum members can help and support you.
Do you have any thyroid antibodies there - as It reads as though you likely have Hashimoto's and experience erratic own thyroid hormone production - and why you put on the Anti Thyroid drug which has resulted in your having to become hypothyroid - once off the Carbimazole your half thyroid may recover - and its a bit of a wait and see :
You might like to read around Hashimoto's an Auto Immune disease known to cause erratic own thyroid production and many forum members read the research and suggestions of Dr Izabella Wentz - who writes as - thyroidpharmacist.com
Hi pennyannie Thanks for the reply. I wasn't sure why I was put on carbimazole, as my levels seemed to be reducing naturally having been taken of all the levothyroxine already. But my gp had discussed it with endocrinology so I went ahead with it.
It's all been difficult to get appts as I wasn't informed that I needed to book online and wasn't given a code.
I'm going to push for the remaining half of my thyroid to be ultrasounded and hopefully have a discussion on the autoimmune side of things.
Yes - good idea - your antibodies were not over range in this blood test result above - but this doesn't necessarily rule Hashimoto's out as antibodies can wax and wane - and for some - they never rise enough to be over the range - though the symptoms expressed with T3/T4 over range sufficient proof of their existence.
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