My TSH was 0.01 and now is

[CharlyMae]

My TSH was 0.01 and I was on 50mg and so they reduced my meds to 25mg and I had my bloods retested as you all instructed and it’s come back as

0.03 - range 0.35 - 5

14.2 - range 9 - 20

Are they going to take me off meds? Why is my thyroid levels so low? Am I even under active anymore? Do I still have Hashimoto’s?

Thanks

[greygoose]

Oh dear! They really shouldn't be dosing by the TSH! That is lazy doctoring, and very harmful to the patient. You need to stand up for yourself and tell them unequivecally that you will not reduce your dose unless they test your FT3 and find it over-range, because you are only over-medicated if your FT3 is over-range. But, as your FT4 is less than mid-range, that is highly unlikely!

TSH is not a thyroid hormone. It is a chemical messanger from the pituitary to the thyroid, to tell it to make more or less thyroid hormone. But, once you are hypo - especially with Hashi's, it becomes a very bad indicator of thyroid status. Ideally, they should be looking at your FT3, because that is the active thyroid hormone, and far more stable than TSH, despite what they think! Failing that, they should be looking at the FT4, as that's all they test. And yours is saying under-medication, not over-medication. Obiously, your doctor is very ignorant about thyroid!

Yes, you still have Hashi's. That will never go away. And, yes, you are still under-active because your FT4 is too low for most hypos. Most need it around 75% through the range.

So, if they try to stop your levo on the basis of a meaningless TSH, threaten them with anything you can think of - anything from complaining to the practice manager to buying your own levo and self-treating.

[Jaydee1507 Administrator]

If your TSH has been suppressed for some reason for a while it can take months to return to normal, sometimes it will never return to normal. You then need to go by FT4 & FT3 which the NHS doesn't test. Your doctor is going by TSH alone and that is a recipe for disaster.

Recommend getting private testing to include antibodies.

See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

The cheapest test currently available is from Randox Heath which includes antibodies if you're OK with finger prick tests. randoxhealth.com/at-home/Th...

If you haven't had vitamin levels checked then do that also.

[SlowDragon Administrator]

previous post 11 days ago shows low vitamin levels ….especially very low ferritin

low vitamin levels will lower TSH …..and low Ferritin likely to make you feel exhausted

healthunlocked.com/thyroidu...

[thyreoidea]

Hi CharlyMae, you only reduced your Levothyroxine a month ago looking at your posts and can be too early to see a large change in TSH, was your test with the NHS or a private one? Have your heart palpitations resolved and how do you feel generally as this is paramount in my humble opinion.

[tattybogle]

greygoose Jaydee1507 ..full history . dose was reduced due to ...

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 you still taking 40mcg Propanolol ?

"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.

"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).

[Litatamon in reply to tattybogle]

Slurred speech can be a sign of b12 deficiency. Have you had that checked CharlyMae ?

("Dizzy inside" can be yet another sign. )

[CharlyMae in reply to Litatamon]

My B12 is low and I’m supplementing currently

[Litatamon in reply to CharlyMae]

Good to hear. Well not that you are low but that you are taking car e of it. Injections? Only asking because if it is an absorption issue, some do not get a lot out of pills or sprays.