I posted last year after requesting a thyroid blood test (I have had hypo for 25 years) and taking 125 thyroxine then upped my dosage to 150 over 6 months ago as felt I needed more. My last test prior to the one I requested in October was July 2023 (clearly my surgery are negligent). Anyway, the test in October showed a massive leap in TSH to 12.7 with T4 around 14. My symptoms have been large increase in weight without eating more, extreme exhaustion, extreme hair loss, high BP, inability to think clearly and memory loss etc. When the result came back so high I thought that answered why I felt like I did and assumed I would have to increase my meds.
However, after I requested a blood test a week ago (once again,I had to ask for it!) I assumed the TSH would be going in the same direction as if anything, I feel much much worse. I just saw the pharmacist today to discuss my BP (getting higher) and she told my thyroid tests just came back so we checked them and I was shocked to see my TSH is 0.15 and T4 is 19!!! I have no idea how the result in October could be 12.7, then just 2 months later with no change in meds, be so far in the other direction!! I told them this must mean there was a mistake and they flatly denied this saying the labs are 100% correct and careful, therefore I can't prove this.
For the record, here is the trajectory of my lab results since 2018 (I was living in Spain prior but my levels were similar since diagnosis 25 years ago). I have been overactive in the past due to upping my dose but definitely need to be around 1.5 to feel better.
15 oct 24 - 12.7
10 July 23 - 3.50
15 Apr 21 - 0.15
17 Aug 20 - 0.03
15 Feb 20 - 6.02
17 Dec 2019 - 0.60
15 Sept 18 - 1,36
13 Jan 18 - 3.08
What is very strange is that I have no symptoms of being overactive (which I had in the past), I have a slower heart beat, my eyes are not staring (which happened in the past), I am putting on weight not losing it (when I was hyper before I was losing weight), one thing that fits for both hyper and hypo is extreme hair loss. I am not sweating/ shaking and my body feels as though it can't cope with any exercise/ effort and I feel like I am completely slowing down and getting huge! Of course I am VERY depressed and almost suicidal and desperate for my GP to help me. I am seeing my surgery again tomorrow but I have no idea what they can do and I have no money to go private.
Would appreciate some advice, thanks!!
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nothing has changed, same meds and same way of taking them, that's why it seems odd, but as previously said, nothing I can do about that test and I need to check in details with my GP who will likely order another test!
The range for T4 is 10.5 to 24.5 - if I am currently 19 then I am within range. TSH at 0.15 is definitely categorised as overactive. My GP won't test T3. I asked for antibodies test but haven't seen the details of the results yet, I will discuss tomorrow.
I am curious as to why you are mentioning when I take the meds as this suggests you don't think I am absorbing enough thyroxine but if I am now overactive, surely it means I am absorbing too much?? I take my meds at night a couple of hours after eating / drinking. For 25 years I took my pill in the morning on waking with a cup of tea and had no issues at all absorbing the meds as you can see from my yearly results. I take magnesium and other supplements first thing so not to affect thyroixine meds.
Hi, yes you're correct, I am not overactive as such but possibly over medicated, which seems strange given the results and my symptoms but definitely requires investigating. My vitamin levels were all within normal range, however I just checked ferritin which is 48, lower end of normal, and just read that for hair growth it needs to be 80 (which I've never had when checking back), perhaps i need to get a quick supply of this so that I am not wearing a wig very soon (I am utterly destroyed as I have very long hair that was always my pride and joy), any ideas how to get ferritin quickly? I am taking magnesium, fish oils, Vit D3 plus K2 and vit C (when I remember) - I hate taking tablets and especially large ones so avoid as much as possible!
TSH is a poor indicator of thyroid status. Better to go by Free hormone results and your FT4 is within range and we dont know if you are converting well as no FT3 result.
Its better to raise ferritin with diet unless you have run a full iron panel and know you need iron. It can be toxic in excess. Its also notoriously slow to raise ferritin.
thanks for all your info, very interesting! My vit D tests just say serum total 25-OH vit D, so not sure if this is D3 (but assume it is)
15 Oct 24 - 73
1 August 23 - 104
27 April 21 - 101
All within normal and the tests simply say that 25-50 risk of deficiency and higher than 50 sufficient for most people, so on these results I have well above the required level and continue to take fairly high dose most days
B12
Oct 24 - 567 and range is 197-1000 so I am exactly in the middle of the required range
Serum folate
15 Oct 24 - 4.2 - range is 3.9 to 9999 so I am right on the normal level but almost deficient, not sure what this means, the GP didn't highlight it
Hi, thanks again, you know your stuff! Actually I made a mistake on the follate, my level when test was actually 42 (not 4.2) so I am okay as you say 20 is acceptable. I will check the other vits too, I have just starting taking iron which has Vit C included and I am considering getting biotin for hair loss
For ferritin I can recommend Three Arrows Iron Repair (it comes from the US). It took my ferritin from 72 to 138 in a month. I took it twice daily with vitamin C.
You may struggle to get it going upwards with diet alone, it’s a very long road. I tried and I ate a diet with plenty of meat, veg. There’s lots of posts on here about iron supplementation. It takes time. So yes I was super surprised at my recent results but also very happy. Just hoping for some new hair now…..
As long as you are doing same thing and on same brand meds things should be steady then. Or it was a rogue result but your symptoms sounded low thyroid.
I was trying to think why October was so different - if something was stopping you absorb the hormone.
Biotin vitamin B7 can swing thyroid results around too. People stop taking it 2 to 7 days before blood tests.
I wasn't taken biotin and take my thyroxine before bed in case of any interraction and same brand of levo so this is why it's so odd, definitely got lots of questions for my GP tomorrow!
hard to say why your TSH was so high in Oct, but whatever the reason for that , it's now looking as expected ie. it's lower than the 3.5 it was when you were taking 125mcg .
if it was me i'd stay on same dose 150mcg for another couple of months and retest under same conditions , to give you a much better idea of trend.
relying on one off 'not as expected' results makes it harder to know what to do with dose. When i get a very unexpected result i now retest 6-8wks later and get fT3 included to give me a better picture of what is actually going on. My TSH can sometimes take much longer than expected to get wherever it's going. ( you'll have to do that privately unless your can get GP to do it ,which is unlikely, but NHS Monitor-My-Health do TSH + fT4 + fT3 for about £30 so it doesn't; have to break the bank )
current result suggest you don't need more levo , and weight gain/ loss can be misleading , eg . some people feel more hungry and can't stop eating carbs when hyper , so it's possible to gain weight when hyper as well as hypo. Plus there is the unknown impact of stopping sertraline last year to take into account
for now i would ignore the 12.7 as a 'one off due to unknown cause'. since it didn't make any sense at the time. maybe you had some other reason for the TSH going sky high , ie maybe you were not absorbing much of the dose at that time due to having coffee too close ? and if you are now leaving longer gap , the absorption has increased , (but TSH going up to 12 seems a bit extreme for that to be the only explanation)..... there can also be various problems with interference in TSH result due to lab processes. eg mouse antibodies (HAMA) and multiple other causes of interference , but if latest TSH was done in same lab using same test method, that also seems unlikely to be the explanation..... chances are you'll never know what caused the whacky result in Oct .
my TSH once went up to 8 for no apparent reason when it was usually 0.05 ish , but i had had a CT scan with iodinated contrast 2 or 3 months previously so that may have been responsible . (large doses of Iodine can do funny things to thyroid levels, although in theory it should not have affected it so long after ).
no idea, I asked my GP to test for antibodies (which has never been done in previous tests) so I hope they will tell me tomorrow! is the treatment for Hashi's different to hypo? Not sure how having Hashimoto would affect the results I have but I will ask my GP and if they can't answer I will demand to see an Endo
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