Newbie: Hi I am new on here, I don't understand... - Thyroid UK

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Ellieb774 profile image
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Hi I am new on here, I don't understand my latest bloods and I have symptoms of aching in legs and dry skin and weight gain. diagnosed hypothyroid 4 years ago thanks

TSH 5.2 (0.2 - 4.2)

FREE T4 13.8 (12 - 22)

FREE T3 2.7 (3.1 - 6.8)

taking 50mcg levo

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Ellieb774
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31 Replies
Marz profile image
Marz

Hi and Welcome ! Can you post those latest test results you do not understand - with ranges too please. People will then comment :-)

Ellieb774 profile image
Ellieb774 in reply to Marz

TSH 5.2 (0.2 - 4.2)

FREE T4 13.8 (12 - 22)

FREE T3 2.7 (3.1 - 6.8)

taking 50mcg levo thanks

Marz profile image
Marz in reply to Ellieb774

Why are you on such a low dose ? Have you always been on the same one ? your TSH needs to be around 1 or under and the FT4 and FT3 in the upper part of their ranges.

Have you had thyroid anti-bodies tested ? - TPO and Tg ? If negative - then it will rule out Hashimotos - or auto-immune thyroid.

We all need good levels of B12 - Folate - Ferritin - VitD - to both feel well and for the Thyroid hormones to work well in the body. The ones we take and the ones we produce :-)

Ellieb774 profile image
Ellieb774 in reply to Marz

On a low dose because of previous thyrotoxic results and antibodies when last checked were TPO antibody 349 (<34) I don't know what to do about my vitamin and mineral levels thanks

Marz profile image
Marz in reply to Ellieb774

If you have the results you can post them here ....

ITYFIALMCTT profile image
ITYFIALMCTT

You need a dosage adjustment. 50mcg is a typical starter dose - when was it last adjusted?

TSH 5.2 (0.2 - 4.2) Above the range

FREE T4 13.8 (12 - 22) Just off the floor of the range

FREE T3 2.7 (3.1 - 6.8) Below the range

An appropriately-medicated hypo patient tends to find that the TSH is suppressed to <1 as that is typical for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.

Was the appointment for your blood draw as early in the morning as practical? Did you fast overnight (water allowed) and make sure you'd not taken Levo for 24 hours? This gives a good chance of catching the highest reading of TSH in your day which can be useful when assessing the need for an increase or to avoid a reduction in dose. Seaside Susie describes this as a patient to patient tip which we don't discuss with doctors or phlebotomists.

What has your GP said about your over range TSH and your barely at the bottom of the range FT4 and below range FT3?

Have you always been on 50mcg Levo?

If you've had a higher dose, why did it change?

Have you ever felt well, if so what dose and what were the test results?

Have you had thyroid antibodies tested - what was the result - were they high - and did anyone mention that you have Hashimoto's as this is the commonest root of hypothyroidism?

Have you had vitamins and minerals levels tested - what were the results - are you supplementing with anything - what dose?

Sorry for all the questions but it's useful to know this information as it helps members to help you when we have this information.

Ellieb774 profile image
Ellieb774 in reply to ITYFIALMCTT

The appointment for the blood draw was early morning and I fasted overnight and did not take levo for 24 hours Nothing has been said about latest results and I have not always been on 50mcg levo and I was on a higher dose and it was changed because of thyrotoxic results. Have never felt well and my antibodies when last checked were TPO antibody 349 (<34) I don't know what to do about my vitamin and mineral levels thanks

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Ellieb774

I wonder if Clutter has some advice as I've seen a few members mention dosage changes after thyrotoxic results.

When you chat to your GP, please request that your vitamin and mineral levels are tested and post the results here, with their reference ranges.

When you have raised antibodies with symptoms of hypothyroidism, it usually indicates Hashimoto's which is the commonest root of hypothyroidism and something for which poor gut absorption is a fellow traveller. Where there is poor gut absorption, this usually shows up in various symptoms as well as blood test results.

The experience of members here is that there needs to be a watchful eye on both the levels of thyroid hormones as well as vitamin and mineral levels because there's a difference between something being within a reference range and being in a part of the range that is optimal for effective use of thyroid hormones (whether our own or supplemented/prescribed ones).

You need a full blood count, along with a full iron panel, ferritin, folate, vitamins B12 and D, please post the results, along with their reference ranges, when you obtain them as it will help members to comment.

shaws profile image
shawsAdministrator in reply to Ellieb774

Did you feel thyrotoxic or was it because your TSH was 1 or lower that he told you you were thyrotoxic?

Ellieb774 profile image
Ellieb774 in reply to shaws

He told me they were thyrotoxic

shaws profile image
shawsAdministrator in reply to Ellieb774

So you weren't experiencing any overactivity but the doctor, by looking at the result, pronounced you thyrotoxic. Oh dear!

Clutter profile image
Clutter in reply to Ellieb774

Ellieb774,

What were the results you were told were thyrotoxic and what dose were you taking?

You are undermedicated on 50mcg and dose needs increasing to 75mcg.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

What are your vitamin and mineral levels?

Ellieb774 profile image
Ellieb774 in reply to Clutter

The results were

TSH 0.08 (0.2 - 4.2)

FREE T4 22.7 (12 - 22)

FREE T3 4.6 (3.1 - 6.8)

Taking 100mcg levothyroxine and 10mcg T3 as previous endo said I cannot convert T4 to T3 and have a clinical need for T3

Will post vits and mins in a few minutes thanks

Clutter profile image
Clutter in reply to Ellieb774

Ellieb774,

TSH was mildly suppressed and FT4 mildly over range but those results weren't thyrotoxic.

Was it endo or GP who said you were thyrotoxic and reduced dose?

Ellieb774 profile image
Ellieb774 in reply to Clutter

Thanks GP said results were thyrotoxic but endo says they weren't. GP reduced dose and endo stopped T3

Clutter profile image
Clutter in reply to Ellieb774

Ellieb774,

GP was wrong and should not interfere with the endo's treatment plan. Did endo say why T3 was to be stopped?

Ellieb774 profile image
Ellieb774 in reply to Clutter

Thanks the endo says he only supports use of Levothyroxine and not T3

Clutter profile image
Clutter in reply to Ellieb774

Ellieb774,

And what do you think? Did you feel better with T3 or did it make no difference?

Ellieb774 profile image
Ellieb774 in reply to Clutter

Thanks I felt better on T3

Clutter profile image
Clutter in reply to Ellieb774

Ellieb774,

Did you tell the endo that and that you wanted to stay on it?

Ellieb774 profile image
Ellieb774 in reply to Clutter

Thanks yes I told the endo that and he still took me off it

Clutter profile image
Clutter in reply to Ellieb774

Ellieb774,

Well that's stuffed it for you. Your only way of getting T3 is to buy it online and self medicate.

Did endo tell your GP to reduce dose to 50mcg?

Ellieb774 profile image
Ellieb774 in reply to Clutter

No endo didn't tell me to reduce, GP did that herself

Clutter profile image
Clutter in reply to Ellieb774

Ellieb774,

GP shouldn't have done that without the permission of the endo. Frankly neither of them is looking after you properly. Endo put his bias against T3 ahead of you saying it helps and the GP halved your Levothyroxine dose when endo has already stopped T3.

You need to persuade your endo or GP to raise your Levothyroxine dose until TSH is 0.3 - 1.0 and get them to decide which of them is controlling your dose because both shouldn't be doing it. If you are still not well after TSH is low then I suggest you write a post asking members where you can source T3.

SlowDragon profile image
SlowDragonAdministrator in reply to Ellieb774

Endo was absolutely correct. In fact your FT3 was still on low side suggesting you needed an increase in T3

Your GP should NEVER change dose. Endo is the expert.

How much did GP reduce dose by?

It very likely upset your vitamin levels. This then stops thyroid hormones working

Stopping T3 has certainly upset them as all too low and you now need to supplement a lot to get them back

SeasideSusie will advise or I will add link shortly

Do you have Hashimoto's (high thyroid antibodies)

Ellieb774 profile image
Ellieb774 in reply to SlowDragon

GP says I was over replaced and reduced by 50mcg and I have high thyroid antibodies

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Ellieb774

Are you taking the T3 or has that been stopped?

Ellieb774 profile image
Ellieb774 in reply to ITYFIALMCTT

No I really think I ought to be taking it. Endo stopped it

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Ellieb774

I think Clutter and shaws would agree with you. Did you appeal the decision to stop the T3?

Ellieb774 profile image
Ellieb774 in reply to ITYFIALMCTT

I did appeal but the endo said he was sorry but he had to take me off it

shaws profile image
shawsAdministrator

Welcome to our forum and for someone who was diagnosed four years ago, it is absolutely awful that you're TSH is still 5.2.

Your doctor is inept so sack him and all of your results are awful too.

First your dose of 50mcg is a starting dose and should have been increased every six weeks by 25mcg until your TSH was 1 or lower with a FT4 and FT3 towards the upper part of the range, whereas yours are bottom of the range but FT3 in particular is below the bottom of the range and it should be towards the top.

Phone your doctor and ask for an increase in levo to bring you dose up to 75mcg. Get another blood test in six weeks time. It has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo and the test and take afterwards.

Levo should be taken first thing when we get up with full glass of water and wait an hour before eating. (some take it at bedtime - in that case you'd miss night dose and take after test and night dose as usual.

If you've not had B12, Vit D, iron, ferritin and folate tested ask for these at your next blood tests. You can tell your doctor you've taken advice from the NHS Choices for information and advice about dysfunctions of the thyroid gland, Healthunlocked Thyroiduk.org.uk.

Tick of your clinical symptoms - theoretically we should have none when optimally prescribed.

thyroiduk.org.uk/tuk/about_...

You have had a hard lesson in that few doctors are knowledgeable about how to treat hypo patients as they wrongly believe that if the TSH is 'somewhere' in the range that's fine - no it definitely isn't fine.

Always get a print-out of your blood test results from now on for your own records and you can post if you have a query.

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