Please help again : I am so sorry to mither again... - Thyroid UK

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Please help again

bellsjet profile image
8 Replies

I am so sorry to mither again but got blood tests back

TSH 4.04 (9.30-4.20)

T4 12.7 (12.00-22.00)

T3 4.1 (3.10-6.80)

I am on Levo 25mg for the past three months I have much better till about three weeks ago and most of symptoms back especially joint pains. My endrocoligist asked my doctor to increase if no better after results but they told me don't need to should I speak to endos Secretary see if they can up it feeling crap again.

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bellsjet
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8 Replies
Nanaedake profile image
Nanaedake

Is the TSH range correct? It's an unusual lab range.

bellsjet profile image
bellsjet in reply to Nanaedake

Sorry meant to say tsh 4.04 (0.30-4.20)

SeasideSusie profile image
SeasideSusieRemembering

bellsjet

/Rant mode on...

My endrocoligist asked my doctor to increase if no better after results but they told me don't need to

Doesn't any doctor know how to initiate and titrate Levo once diagnosed? For goodness sake what's wrong with them all!

You are still very hypothyroid with these results:

TSH 4.04 (9.30-4.20)

T4 12.7 (12.00-22.00)

T3 4.1 (3.10-6.80)

and you shouldn't be left 3 months before retesting. It should be done 6 weeks after starting Levo, an increase of 25mcg, retest 6 weeks later, another increase of 25mcg, until your levels are where they need to be for you to feel well.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

NICE Clinical Knowledge Summary (available to all doctors without having to search too hard!)

cks.nice.org.uk/hypothyroid...

Initiation and titration

The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.

Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.

That does say dose adjustment every 3-4 weeks, but as it takes 6 weeks for Levo to be fully absorbed then it's best to leave 6 weeks after a dose change.

.../Rant mode off

bellsjet profile image
bellsjet in reply to SeasideSusie

Thank you very much for reply I will phone endrocoligist on Tues and ask him as my doctors are complete moorons. I also went to get Levo last week at chemists they said I needed exception form which the docs didn't tell me as paid for two months before.

spongecat profile image
spongecat in reply to bellsjet

Yes. I only found out about the exemption certificate through this help forum, not a peep from my GP surgery. Others have experienced the same. Sometimes this condition throws up other conditions especially if you have autoimmune thyroiditis (Hashimoto's) and the prescriptions can escalate at times and the exemption is very much appreciated.

The certificate is valid for 5 years when you will need to get another one.

I turned 60 a few months ago so am now exempt anyway!

shaws profile image
shawsAdministrator in reply to bellsjet

I doubt some GPs know anything at all about conditions that are 'exempt' and they definitely should do. When diagnosed as hypothyrod and no matter what other condition we develop that requires different medications, we do not pay for any as hypothroidism is a serious condition if under-treated/untreated.

SlowDragon profile image
SlowDragonAdministrator

You also need vitamin D, folate, ferritin and B12 tested. Plus both TPO and TG thyroid antibodies if not been done

Low vitamins are extremely common, especially as you were started on extremely low dose Levothyroxine and left without retesting so long

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

NHS guidelines saying standard starter dose is 50mcgs and that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

beta.nhs.uk/medicines/levot...

bellsjet profile image
bellsjet

Thank you all for replies. We know we are not alone on this forum as all in same boat or have been. I am definitely asking Tuesday endrocoligist to speak to doctor about upping my dosage. I 2ould feel very alone if not on this caring site.

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