newly diagnosed help with results : Hi, I was... - Thyroid UK

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newly diagnosed help with results

Victoria27 profile image
18 Replies

Hi, I was diagnosed hypothyroid a month ago and prescribed 25mcg Levo which I’ve been on since then. They wouldn’t prescribe anything higher as my tsh was suppressed < 0.001

I’ve just had my results back from my test this week and I’m not sure how to interpret and feel like they’re gonna try and take me off the levothyroxine. If anyone can help

Tsh 0.001 (0.49-5.23)

Free t4 20.2 (11.5-22.7)

Free t3 7.8 (3.5-6.5)

Thyroid autoantibodies 3.1 (<1.8)

I feel much better since starting them but my results look as though I’m hyper so not sure.

Thanks in advance

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Victoria27 profile image
Victoria27
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18 Replies
Jaydee1507 profile image
Jaydee1507Administrator

How do you feel?

Its unusual to have good free hormone results on just 25mcgs Levo. Approx how much do you weigh in kilos?

What time of day was this test and when did you last take your Levo before the test? Recommended timing is 24hrs.

Have you tested vitamin levels yet for ferritin, folate, B12 & D3? Its essential these levels are at OPTIMAL.

Victoria27 profile image
Victoria27 in reply toJaydee1507

I feel a lot better this month than I did the month previous. Approx 78kg and I had the test at half 8 hadn’t had any Levo for over 24 hrs before. No haven’t had those tested will that affect my results?

Jaydee1507 profile image
Jaydee1507Administrator in reply toVictoria27

Then it looks like you're in the early stages of autoimmune hypo and your numbers are changing due to attacks on your thyroid and then your thyroid putting out different amounts of hormone.

When we are hypo we get low stomach acid and cant absorb vitamins well from our food.

Low vitamin levels can affect results and conversion of T4 to T3.

Low vitamin levels mean extra symptoms, also thyroid hormone won't work well.

Its essential to test key vitamins ferritin, folate, B12 & D3.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Victoria27 profile image
Victoria27 in reply toJaydee1507

I will ask them thank you. I already take 800 units of vitd3 but unsure about the others

Jaydee1507 profile image
Jaydee1507Administrator in reply toVictoria27

800iu of vit D is a very low dose and not likely to be enough to raise your level to optimal where it needs to be. Suggest you test yourself if GP wont.

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Victoria27 profile image
Victoria27 in reply toJaydee1507

Thanks will have a look and get them all done

Jaydee1507 profile image
Jaydee1507Administrator in reply toVictoria27

Start a new post with the results when you get them.

greygoose profile image
greygoose

You have Hashi's. So your levels have little to do with your dose of levo and more to do with your dying thyroid dumping its stores of thyroid hormone into the blood. Do remind the of that and that whilst it might be a good idea to stop your levo for a while, whilst levels go down, you are going to need it again when the excess hormone has been used up/excreted. So, you still need to keep an eye on your thyroid and test regularly. :)

Victoria27 profile image
Victoria27 in reply togreygoose

That makes sense thank you. I’ll continue on them for now I think and probably wait until gp say something but I definitely can’t stop them altogether as you say

tattybogle profile image
tattybogle

Thyroid autoantibodies 3.1 (<1.8)

is there any more details on there re. which kind of antibodies this result is for ?

eg TPOab ,... Thyroid Peroxidase antibodies

TRab .... Thyroid Receptor antibodies .

just asking because it's an unusual range for TPOab.

greygoose profile image
greygoose in reply totattybogle

But the OP does have Hashi's:

Anti-tpo 54 (0-34)

healthunlocked.com/thyroidu...

:)

tattybogle profile image
tattybogle in reply togreygoose

yes , saw that ......and the previous history ( TSH 6/7 , 5 yrs of taking levo , stopped . etc also some potential for recent steroid having lowering affect on TSH ... how long this affect can last , i'm not sure .... and also some recent IVF fertility treatments .. no idea how they may affect TSH / fT4 / fT3)

am thinking about the weird history .... insert 'tattybogle is thinking' symbol @@@@@@ empty unfiltered brain contents onto page>>>>>

now ... inappropriately supressed TSH / low T4/ and the fT3 going up and down like a yo-yo.... it was 70% , then lower at 4 ish prior to levo ... now weirdly over-range on just 25mcg ..just seems a bit curious. you know .. the kind of thing you'd think an endo would be interested in ... oh wait ... they don't do 'interested/ curious' do they .....

Yes hashi's could be responsible , but was vaguely wondering if something else was causing the highish T3 levels before levo ....ie . autonomous hot nodule producing mainly T3 ?... that might explain the low TSH ( higher T3 than she needed),.. the low TSH would then explain the low T4 (thyroid not being asked to make any, because pituitary more than satisfied with the higher T3 ) ... and why T3 is now over range on just 24mcg .

am also thinking that TPOab is not an exclusive diagnosis at that sort of level . eg graves patients will very often have mildly raised TPOab. but clearly their active issue is graves not hashi.

... hence me wondering if the above antibody result may be for TRab .. seems unlikely if it was a GP test though ... (GP's usually can't order it , endo has to ask for it) ... so it probably is a TPOab, just with an uncommon lab range.

i think a thyroid scan of some sort would be useful to see what's actually happening in there .

end of my 'unfiltered musings' ... not much use to anyone i daresay :)

greygoose profile image
greygoose in reply totattybogle

Well, an endo certainly wouldn't be capable of wading his way through that lot! But I agree a scan does sound like a good idea. And in my opinion, should be done automatically, anyway. But, then, I'm such an idealist! lol

Victoria27 profile image
Victoria27 in reply togreygoose

How would I even go about persuading my gp to get that done? I’m also curious if I’ve even been on Levo long enough for it to have had such a big effect on my frees. Dr originally said to get them tested after 2-3 months to see a change.

greygoose profile image
greygoose in reply toVictoria27

He might not even need persuading if you suggest it to him. Especially if you suggest it often enough! He'll agree just to get rid of you. It's probably never even occurred to him to do an ultrasound.

I’m also curious if I’ve even been on Levo long enough for it to have had such a big effect on my frees.

No, you haven't. That's why I said that those levels probably have more to do with your Hashi's than your dose. Do you know how Hashi's works?

3 months on 25 mcg is much too long. He should retest after six weeks.

They wouldn’t prescribe anything higher as my tsh was suppressed < 0.001

I don't understand how you got anything prescribed at all with that very low TSH. I'm amazed they didn't 'diagnose' you with Graves'! On what did they base their diagnose of hypothyroidism?

Victoria27 profile image
Victoria27 in reply togreygoose

I was originally diagnosed with Subclinical hyper so I got my antibodies tested and they came back positive. Plus I had loads of symptoms of hypo and my free t4 was below normal range. They left it for me to decide if I wanted medication or not

greygoose profile image
greygoose in reply toVictoria27

OK, so FT4 below range is an absolute clincher! Lucky they did that because often they only test TSH - in which case you probably would have found yourself on carbimazoli! Which would not have been good.

Victoria27 profile image
Victoria27 in reply totattybogle

I’m not sure that’s all it says on the nhs app. I thought it was odd too. But yes I’ve had antibodies done before and they were as above for anti tpo

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