Finally I am being prescribed T4! : My Dr has... - Thyroid UK

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Finally I am being prescribed T4!

MelonJ profile image
16 Replies

My Dr has finally agreed that I should have a trial of Levo. She wanted me to start on 25mg but I requested 50mg after seeing posts on here and she agreed :)

I am picking up a prescription today so I can find a pharmacy with the right brand - please can I have recommendations for what I should ask for?

She said I will be retested in 8 weeks - I said I thought it should be sooner but she didn't agree. Is this right?

She wouldn't refer me for an ultrasound but is sending me to ENT instead to check out my throat. Not sure what they will do but I wasn't going to argue when I had a small victory.

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MelonJ
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16 Replies
SeasideSusie profile image
SeasideSusieRemembering

MelonJ

Although the NICE Clinical Knowledge Summary says 4 weeks, it takes 6 weeks for the full effects of Levo so 6-8 weeks isn't a bad idea really.

There is no "right brand", it's whatever suits you and you wont know unless you try.

It's true that many members have had side effects from Teva, which is lactose free, but some members find it's the best brand for them and have no problems.

I'd just take what's on offer, if it doesn't suit then ask to be changed to a different brand.

MelonJ profile image
MelonJ in reply to SeasideSusie

Thanks SeasideSusie :)

MaisieGray profile image
MaisieGray

There is no "right brand", only the right make or makes, for you. I have never found one make over another, to affect me differently; whilst other people find they do better on one or less good on another. Generally that will be because of a sensitivity to, or intolerance of, one of the inactive ingredients rather than the active T4, but it doesn't mean you will have the same experience. If your prescription specifies only Levothyroxine sodium, a pharmacy is obligated only to dispense tablets that meet that prescription; if you find a make that works better for you, or one that causes you side effects, your GP can specify a particular make on the prescription but not all pharmacies will necessarily stock a particular make or be able to source it for you. I'd say it's best to approach taking any new drug with an open mind and an expectation it will achieve for you what you need it to, rather than anticipating any problems because it's made by this or that pharmaceutical co.

The NICE guidelines are that she should retest 4-6 weeks after starting Levo, and after every dose change. There's no need or benefit to test earlier than that, but delaying testing and any necessary dose adjustments unnecessarily delays you from becoming optimally medicated and hopefully euthyroid.

MelonJ profile image
MelonJ in reply to MaisieGray

Thanks MaisieGray.

It's taken a while for me to get a prescription and I just want to make sure I am doing the right things to get the best from the Levo. I appreciate everyone's advice :)

humanbean profile image
humanbean

Always make sure that you get a paper prescription so you have the freedom to phone up various pharmacies to ask them which Levothyroxine they have in stock. Once you've found a pharmacy with supplies of a Levo you haven't tried then take your prescription there. Make sure you mention your dose e.g. 1 x 50mcg per day or 1 x 75mcg per day. You don't want to be supplied with a mixture of makes.

Keep notes of symptoms you get on each brand. You may find you do really well on one of them, but it is also possible you have to find the brand which is the best of a bad lot.

It is a good idea to print out a list of symptoms and mark each one with a score from 0 to 10, where 0 means you don't get that symptom, and 10 means you get it and you find it unbearable. Record with each set of scores what make of Levo you were taking and at what dose. You could do the scoring once a week or once a month, say.

The short list : thyroiduk.org/tuk/about_the...

The long list : hypothyroidmom.com/300-hypo...

You should find these links useful :

thyroiduk.org/tuk/treatment...

thyroiduk.org/tuk/treatment...

MelonJ profile image
MelonJ in reply to humanbean

Thanks humanbean, I got a paper script today and took it to my usual pharmacy. They’ve given me TEVA so I’ll see how it goes. Great idea keeping a record, I’ll do that :)

Fruitandnutcase profile image
Fruitandnutcase in reply to MelonJ

I found it a really useful thing to do when I was being treated for Graves a few years ago. I used an old page to a day diary, also did an online diary. I just jotted down very quickly how I felt, any changes etc and how much thyroxine I was taking, blood test results etc etc. Came in very useful when talking to my doctors. Without it I would just have said ‘fine’ when I was asked how I was, with the diary I used to go through it the night before I was due to see my doctor and bullet point anything I wanted to ask / say.

MelonJ profile image
MelonJ in reply to Fruitandnutcase

good idea thanks Fruitandnutcase :)

Nanaedake profile image
Nanaedake

At my doctors you have to book a blood test at reception with the phlebotomist. So you can choose an available date which is usually several weeks away. You might get a date in about 7 weeks and compromise between 6 and 8 weeks. It usually takes another week to get the new prescription dispensed anyway as it takes time for the doctor to review the results.

MelonJ profile image
MelonJ in reply to Nanaedake

Hi Nanaedake, my drs it’s usually only 4 weeks so I’ll make sure I get in there for an early morning appointment.

jamalka profile image
jamalka

Berlthyrox :P

MelonJ profile image
MelonJ

The box says take before breakfast, 30 mins before food, caffeine and other meds. I don’t usually eat breakfast but am dead until I have 1 cup of tea at least. I’ll try to take as soon as my alarm goes off but I’m sure I’ve seen on here that I should wait for 1 hour, is that correct?

Thanks all for your help, I’m feeling a little more positive about the future x

SlowDragon profile image
SlowDragonAdministrator

You can try taking at bedtime, may find it more convenient or effective

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Personally I would have said avoid Teva, (unless you know you are lactose intolerant) but try any other brand

But now you have Teva, see how you get on

Bloods should be retested 6-8 weeks after each dose increase. Dose is increased slowly in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

MelonJ profile image
MelonJ in reply to SlowDragon

Thanks SlowDragon, I was thinking of trying evening instead. I do take BP meds and D3 but can easily change the time for those. :)

SlowDragon profile image
SlowDragonAdministrator in reply to MelonJ

High blood pressure is a hypothyroid symptom, it might/should improve

Which BP medication do you take? Hopefully not propranolol.

MelonJ profile image
MelonJ in reply to SlowDragon

I'm on Candesartan, have been for about 10yrs.

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