In my previous post I told you that my TSH was still low after a reduction of thyroxine to 25mg.
My latest results were:
TSH: 0.03
T4: 14.5
They have now advised me to come off my medication completely for 6 weeks, is this right? He rushed me off the phone basically and said that this is the only way. Happy to agree with him if this is right?
I have booked myself a MediChecks advanced thyroid test and will do it once the bank holiday is over and done.
I remember someone saying you shouldn’t come off your meds until you know what your T3 is?
The last time I had my T3 checked was late last year and it was high. It was slightly 8.53 - range 3.1-6.8 but that was in August 2022.
I know my vitamin levels are on the low end and I’m supplementing.
Thanks!
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CharlyMae
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.full history .. people need to read this before replying , as it explains why dose was reduced :
March 2021 :
Diagnosed Hashimoto's.
TSH 44
fT4 7 [9-20] .
started on 25mcg ! levo.
(taking a ppi , allergic to cows milk, stopped eating soy now , gluten /dairy free already )
April /May 2021:
Results on 25mcg ..... TSH 3.4
Levo increased to 50mcg
TPOab 600 [0-34] ~ GP wasn't willing to confirm hashimoto's until ultrasound scan done !
Was this scan ever done ? what did it show ?
July 2021:
results on 50mcg.... TSH 0.88 (3 months after diagnosis)
July 2022 :
I had a baby 4 weeks ago and I thought my thyroid was off as my speech was slurred and I was extremely tired even for a new parent
TSH 0.8
T4 14.8 [12-22] ..... a.m test after taking levo , so ? false high FT4 result.
"Doctors think it’s all normal but I know I don’t feel right! feel dizzy inside... I’m wondering whether it’s that or my inner ear. My speech feels slurred too and I feel slow"
August 29th: medichecks results inc vitamins healthunlocked.com/thyroidu...
TSH: 0.03 [0.27 -4.2] ...8.30 am test , no levo for 24 hrs.
FT4 : 29.2 [12-22] .... suggested to lower dose to 25 mcg for now and see how it goes (hashis hyper sing, ?post partum wobble)
FT3 : 8.53 [3.1-6.8]
Thyroid peroxidase antibodies 304 <34
" have been medicated for 2 years now but after having my son 12 weeks ago, I felt awful! Extremely tired (not just newborn tired), dizziness, blurry vision, vertigo and just feeling really slow like I’m waking in mud…"
Sept 15th 2022 :
"When I had my bloods done on the 25th August it showed I was swinging into over active - TSH 0.03 I definitely felt weird and still do… That same week I reduced my meds but I still have heart palpitations, anxiety, racing thoughts, can’t focus and I have this butterfly feeling from my throat down to my stomach. It’s been nearly 4 weeks since reducing meds and I’m due to get another blood test soon but I still feel over active…"
Charlymae ..What were the results of that blood test on 25mcg ?
When/Why did you put dose back up to 50mcg ?
7th Feb 2023 :
on 50mcg :
TSH 0.01
fT4 16.9 [ 9-20}
"I have been advised to drop my meds down to 25mg of thyroxine. Any ideas why it’s gone so low?"
When/ why did you increase back to 50mcg ?.. you had previously reduced to 25mcg in aug /sept.
GP now reduced to 25mcg
TSH can get 'stuck' at low levels for a while once it's been low , so even though fT4 is now lower, your TSH may not have caught up yet.
March 13th:
"I reduced my thyroxine to 25mg and for a week my heart palpitations stopped but now it’s back. I’m considering not taking my meds for a few days, thoughts?"
Prescribed 40mcg PROPANOLOL to ease palpitations.
April 10th :
"I haven’t re tested my levels yet as doctor wants to wait 6 weeks but I’m now taking 25mg of thyroxine and I feel more balanced now with less heart palpitations".
Results now on 25mcg :
TSH 0.03 [0.35 - 5]
fT4 14.2 [9 - 20]
Presumably this is at least 6 weeks on 25mcg? What date did you reduce to 25mcg ?
"Are they going to take me off medication ?" .... probably not , because your TSH has risen a little and your fT4 is not high. They will probably tell you to stay on 25mcg for now and wait to see what happens at next test ... hopefully they will keep a close eye on you and retest in another 6 weeks"..... personally i think it's too soon to stop levo , i'd want to retest in 6 weeks an see what happen next. your TSH could just be lagging behind due to being low previously ,. and your fT4 is not currently high.
"Do i still have hashimoto's ?".... yes, it doesn't go away , but you also just had a baby ,and this often sends thyroid conditions on a wobble for about a year afterwards, so it' hard to predict what will happen to your results for a while . you'll just have to watch and wait.
Your TSH will probably continue to rise on 25mcg (now it has started to come back up) , and sooner or later your dose will need to be increased again .. your GP needs to be aware that TSH can take a while to come back up and so they should be paying attention to FT4 level and symptoms , not just TSH .
Very rarely , autoimmune hypothyroidism can switch to become properly hyperthyroid , but you have not .. your fT4 is not over rage any more that was just a brief blip ... (if you were actually hyperthyroid your fT4 would still be over range and would stay over range even on no levo).
"...he rushed me off the phone basically and said that this is the only way". .....
The 'only way to do 'what' ?..
did he say his objective is that you feel better ?
or is his objective to get your TSH back up ?
Do you feel basically ok apart from some palpitations . or are you really struggling ?
if you feel basically ok at the moment and are managing life well enough , then i would say rather than rock the boat just now (and risk falling in) , i'd wait on 25mcg a bit longer to see what happens.. you TSH has already started to come back up after 6 weeks on 25mcg .. it may already be on it's way to being higher anyway if you wait another 6 weeks on 25mcg .
Stopping all levo might be ok and it might improve the palpitations , but it might not .... if TSH is just being slow to rise and you do still really need some levo (if the TSH is misleading at the moment ) , then you could be in for pretty rough 6 weeks if you stop levo .. not what you need really, if things are feeling fairly manageable at the moment.
Do you have enough levo to continue to take 25mcg for 6 weeks (from the date of that last test).. and then do your private test with TSH/ fT4 /fT3 ? .. more information leads to better decisions ... so i think that is what i would do if it was me .
if you had just had post partum thyroiditis ( did not have a thyroid problem before pregnancy ). then i could see the logic of trying to come off levo at this point .... because that often sorts itself out within a year ..... BUT your thyroid was already going wrong long before you had a baby, with TSH 44 and positive TPOab , so we KNOW there is an underlying autoimmune thyroid issue , and that is not likely to just go away .
I think having a baby just caused a wobble on top of that , and that wobble is taking a while to settle back down .. i think you'll probably end up needing to be back on 50mcg at some point ..... i don't think your autoimmune hypo is 'better'.
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