Advice please on medication and results - Thyroid UK

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Advice please on medication and results

Sally1253 profile image
12 Replies

Hi please can I have some advice results below. I am on liquid levothyroxine since January because I am allergic to tablets fillers but every time I order my medicine despite requesting same brand as time before am given one of two brands but never same one as the last time so constantly switching between the two, would this affect my results? Haven’t seen much change in tsh or antibodies since last bloods have cut gluten out, cheese, limited dairy and following low histamine since September but wondered if I should give more time or ask for LDN

Thyroxine has now been increased from 5-7.5ml

10/3 bloods

Tsh march 4.56, December 5.01, October 6.96, August 4.92 and May 4.94

(0-4 good)

T4 March 13.8 , December 10, October 11.9, August 11 and May 12.9

(11.2-20.2 good)

Antibodies march 626,December 455, October 518 and may 388

Normal 0-24

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12 Replies
SlowDragon profile image
SlowDragonAdministrator

How long had you been on 5ml

Good that dose has now been increased to 7.5ml

Bloods should be retested 6-8 weeks after each dose change (or brand change) in levothyroxine

The aim of levothyroxine is to increase the dose slowly upwards in 25mcg (or in liquid 2.5ml) steps until TSH is ALWAYS Below 2

Most people when adequately treated will have TSH around or under one and Ft4 in top third of range

Most important results are always Ft3 followed by Ft4

ESSENTIAL To regularly retest vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you currently taking

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Did you get coeliac blood test before going gluten free

Sally1253 profile image
Sally1253 in reply to SlowDragon

Thank you ferritin was tested last May and was 77 haven’t been offered testing for others listed are these able to be offered through nhs or purchased privately I haven’t been taking any supplements since last year as have been allergic to most tablets fillers and food (mcas type reaction). I have had a strong autoimmune reaction to covid jabs so currently having more tests which is why I was enquiring about LDN too

SlowDragon profile image
SlowDragonAdministrator in reply to Sally1253

When did you start on 50mcg (5ml) levothyroxine

TSH is far too high and Ft4 too low on all these results

Come back with new post once you get full thyroid and vitamin results after 6-8 weeks on 7.5ml

Tsh range. 0-4

march 4.56,

December 5.01,

October 6.96,

August 4.92

May 4.94

T4 range 11.2-20.2

March 13.8 ,

December 10,

October 11.9,

August 11

May 12.9

Sally1253 profile image
Sally1253 in reply to SlowDragon

Only found a medication I wasn’t allergic to in January so started liquid levothyroxine then before that bloods were being monitored to see if they would come down on their own I will post new results in May thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Sally1253

Ok….makes sense

You might want to test vitamin D now

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

SlowDragon profile image
SlowDragonAdministrator

Suggest you get FULL Thyroid and vitamin testing done yourself 6-8 weeks after this increase in dose

Likely to need further increase in levothyroxine after this

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Sally1253 profile image
Sally1253 in reply to SlowDragon

Sorry just seen this message so all tests including coeliac private? All bloods were done at 9.15

helvella profile image
helvellaAdministratorThyroid UK

Which brands of levothyroxine oral solution do you get?

Some are different to others, but I am pretty sure others can be identical. It is necessary to check at least the manufacturer.

Sally1253 profile image
Sally1253 in reply to helvella

I take zentiva and teva liquid

helvella profile image
helvellaAdministratorThyroid UK in reply to Sally1253

They are made by different companies so, even if the ingredients were identical, could end up having different impacts on you.

If you want to always get one make, have a look at this post (it applies to all medicines, not just levothyroxine tablets). But remember, if you do that, you could make it more difficult for yourself if ever there is a shortage.

healthunlocked.com/thyroidu...

Sally1253 profile image
Sally1253 in reply to helvella

Thanks Helvella I know I just want to keep to the same brand I did ask for zentiva in my email request to pharmacy they have said it’s not in stock and given me teva. I just want to keep to same brand but if they say they have stock difficulties what can I do if I need to take the medication

helvella profile image
helvellaAdministratorThyroid UK in reply to Sally1253

I've posted this many times:

When someone reports that a particular medicine cannot be obtained by their pharmacy, I always suggest contacting the pharmaceutical company/manufacturer directly.

We have had many occasions when the information given by the pharmacy to the member has not been accurate.

Examples with good outcomes have included:

• There were issues, but they are now, or will very shortly be, resolved;

• There is no issue and it is not clear why the pharmacy said there was;

• The product has a new branding - and is now only available under the new name;

• Give the pharmacist some information and they will be able to get the product.

And examples with bad outcomes:

• The product is no longer available;

• There is an issue that will not be resolved in the time required;

• The product has been recalled.

Quite often, members have found that the pharmaceutical company/manufacturer can and will advise how a pharmacy can obtain stock. At the worst, you can find out from an authoritative source that there really is an issue that will not be resolved. With pharmacies, you will almost always have at least one extra company - the distributor - between the pharmaceutical company/manufacturer and the pharmacy, allowing confusion to enter.

Some pharmaceutical companies/manufacturers have been extremely helpful to members who have contacted them.

The company name is not always the same as the brand name. You can find the company name on the packaging (though in smaller letters and possibly on the back or bottom) and at the bottom of the Patient Information Leaflet. For example, Mercury Pharma is a brand name but the company is Advanz.

Contact details for most, possibly all, UK pharmaceutical companies/manufacturers can be found here:

medicines.org.uk/emc/browse...

Or the British National Formulary's list:

bnf.nice.org.uk/guidance/in...

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