Medication not working...

[Debbie737]

Help please!!!

I’ve been on 25 mg levothyroxine since May

Was put on them after blood results of

TSH 4.3

Free t4 13.9

Not been feeling great since starting them, very tired, very down and have gained 1/2 stone in weight 😱

Had a blood test on Friday and results were

TSH 5.1

Free t4 14.1

So doesn’t look like the medication is doing anything!

I have a dr appt on Thursday but I’m not what I should be asking him to do!

Do I need to increase the medication?

[cwill]

It’s normal to start levothyroxine and have bloods every 6-8 weeks at which point the meds are adjusted until your symptoms ease and your bloods show a good response. The guidance recently stressed that levo should be dosed by body weight, someone else might have the link for you to print and wave at your GP. Will see if I can find it.

[cwill in reply to cwill]

And yes I would expect a rise in levo as your dose is small.

[cwill in reply to cwill]

btf-thyroid.org/information...

Here it clearly states doses by body weight. Your GP should react well to BTF. Also check the TUK site for all their info on test results and what your Dr should aim for. Your TSH should be coming down as your dose is effective, FT4 rising.

[NWA6]

Hey Debbie737. Don’t panic 🤗 25mcg is an measly amount of Levo. How long have you been on it?Are you an elderly lady or have a heart condition? Usually a starter dose is 50mcg, so unless you have some underlying reason for starting on 25mcg, your GP has made a mistake starting you in such a low dose. You will be moved up to 50mcg and then you should have another blood test in 6wks time and see if you can get your FT4 raised.

[SlowDragon Administrator]

Standard starter dose is 50mcg unless you are over 50 years old

So you were started on extremely small dose and now need increase to 50mcg

Bloods should be retested 6-8 weeks after each dose increase

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

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

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Ask GP to test vitamins and thyroid antibodies if not been done

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Levothyroxine should always be taken on empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and more effective taken at bedtime

All medication at least two hours away from Levo. Some like HRT, PPI's, magnesium, iron or vitamin D, at least four hours away

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

Suggest you see exactly what was tested when first diagnosed

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

[Debbie737]

Thanks everyone!

I am 42 years old and weigh 9 stone

I’m 5ft 8 so I’m aware that is quite light!

This is the first blood test I’ve had since I started the meds

I’ll go back to the dr tomorrow and see what he suggests

[SlowDragon Administrator in reply to Debbie737]

Many GP's would think if patient is not vastly over weight, you can't be hypothyroid. So your size may not help your argument for increased dose

But significant minority when hypothyroid, loose weight or struggle to gain weight when hypothyroid

[greygoose]

Levo is not 'medication' in the same way as an aspirin, or other drugs. It is a hormone - the thyroid hormone T4. Therefore, it has to do something. Problem is, doctors don't understand exactly what it does, nor how it works.

With hormones - all hormones - we have to start low and increase slowly. With levo, that normally means starting on 50 mcg and retesting in six weeks, and increasing by 25 mcg. And continuing like that until the symptoms are gone and the patient is well.

However, if the patient is very young, or very old - and the NHS considers 50 to be very old! - or you have a heart condition, they lower the starter dose to 25 mcg. What they don't realise is that giving such a low starter dose can have the opposite effect to the one desired. The desired effect is to raise the FT4 (and the FT3, although, in their ignorance, they don't test that) and lower the TSH. But, if the dose is too low, it can have the effect of stopping what natural production your thyroid was managing, but not be enough to replace it. So, you, in effect, have a reduction in your available thyroid hormone in the blood. This causes the FT4 to drop and the TSH to rise.

But, I would not go waving that paper under the doctors nose where it says you should be dosed by weight! Because that is not true and could work against you. The dosing by weight is a way to calculate the starting dose for someone who has had their thyroid removed, and is therefore suddenly plunged into hypothyroidism. Their dose is then adjusted more appropriately after their first blood test - the doctors do not continue to dose them by their weight. For those of us that slowly became hypo for natural reasons, it's best to use the 'start low and increase slowly' method of dosing. We all need what we need, and that shouldn't be restricted by our weight, age, sex, or anything else.