reducing thyroid meds

[Edensull]

had thyroid gland taken out 30yrs ago because of cancer now have to reduce dosage by 50mg a week because Tsh has gone out of range will I get withdrawal symptoms I also was told to try and keep to same brand of levothyroxine as this can change levels my chemist gives me different brands all the time the last 9 mths

[SlowDragon Ambassador]

welcome to the forum

Yes different brands can be an issue for many people

Which brands do you prefer

Or is there a brand you need to avoid?

Teva brand upsets many people, but a few people find it’s the best

If you have a brand you feel best on get GP to specify on all future prescriptions

GP needs to name brand in first line of prescription

Eg

Vencamil 50mcg x 56 tablets

Or

Mercury Pharma Levothyroxine 100mcg x 28 tablets

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

[SlowDragon Ambassador]

have to reduce dosage by 50mg a week because Tsh has gone out of range will I get withdrawal symptoms

Do you have your actual results and ranges

Ideally GP should have tested TSH, Ft4 and Ft3

ALWAYS test thyroid levels early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Is this how you do your tests?

This gives highest TSH and lowest Ft4 results

Also request that GP test vitamin D, folate, ferritin and B12 at least annually

Important to maintain GOOD vitamin levels on Levo

Low vitamin levels more common as we get older too

Exactly what vitamin supplements are you taking

Just reducing dose by 50mcg PER WEEK is very sensible, very small reduction ……sounds like a rare sensible GP not saying to make HUGE changes

[greygoose]

Hi Edensull, welcome to the forum.

Your doctor really shouldn't be dosing by the TSH. It's a very unreliable indicator of thyroid status. And the lower it gets, the more unreliable it is. It's not even a thyroid hormone, it's a pituitary hormone.

Will you get withdrawal symptoms from lowering your levo? No, because levo is not a drug. It's the thyroid hormone T4. You cannot become addicted to hormones, therefore you cannot have withdrawal symptoms.

On the other hand, if reducing your levo is going to cause your FT4 to drop too low, then you could find you have a return of hypo symptoms. But, unless you've had your FT4 tested, we cannot know if that is going to happen. There is no way on earth that just testing the TSH can tell you the level of your FT4 or your FT3, and doctors are just incapable of understanding that, I'm afraid.

As for getting a different brand of levo every time, it really is very unkind of pharmacists to do that but they don't understand how much it can affect some people - nor do they care, I suspect. But, the good news is, changing brands doesn't affect everyone. Some people are fine whatever they take. Do you have the impression that you feel better on some brands than on others? Or don't you notice any difference?

[pennyannie]

Hello Edensull and welcome to the forum :

Without a thyroid the TSH is a very unreliable measure of anything and we must be dosed and monitored by our Free T3 and Free T4 readings and ranges.

There is an internal body chain of events called the HPT axis -on which the TSH relies on as working well - this Hypothalamus - Pituitary - Thyroid feedback loop is down regulated when you haven't a thyroid as the Thyroid in now not there - and this circuit loop now open ended making the TSH a very unreliable measure of anything.

Just for reference a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1.T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 being the active hormone and said to be around 4 times more powerful than T.

I think you need to ask for a full thyroid blood panel to include your TSH+ T3 + T4 - this need to be an early morning fasting blood test - and you leave around 24 hours from your last dose of T4 - so if you generally take T4 in the morning - just get the blood test done first and then take your Levothyroxine so having left around a 24 hour window from your last dose of T4.

No thyroid hormone replacement medication works well until your core strength vitamins and minerals are up and maintained at optimal levels in the range and so we also need readings and ranges for ferritin, folate, B12 and vitamin D to fully understand what is going on and on how best we can support you.

If your doctor can't help you with these blood tests there are private companies who can - as listed on the Thyroid UK website which is the charity who supports this open patient to patient forum and where you can around further of all things thyroid - thyroiduk.org

There are a couple of private blood test companies who offer a nurse home visit to draw the blood for you - I find this the least stressful way now to run my yearly full thyroid panel -

and the blood test is around 10/11 biomarkers and when you have the results back you just start a new post on the forum and you will be talked through and advised of your next best step back to better health.

P.S. best to arrange an early morning fasting blood test - just take in water overnight and take your T4 after the blood draw - so we see what your body is holding and not that just ingested - and if reliant on the post service - make appointment on a Monday through to Wednesday so blood sample is actioned by the weekend - rather than sitting somewhere congealing going nowhere.

I doubt you'll get withdrawal symptoms - but it all depends how much T4 you are taking and how well it is utilised and converted in your body into T3 which is the active hormone that runs the body :

[Tina_Maria]

Just to add to the other comments here, T4 is a replacement hormone - it is replacing the thyroid hormone your body can no longer produce. If you have too little of these thyroid hormones, you will experience symptoms and other metabolic functions such as glucose metabolism, cholesterol metabolism and other processes can be impacted by having too little of these hormones.

50mcg is by far too little, it is usually the dose people start with before they are titrated up. A general replacement dose for thyroxine is 1.6 mcg per kg of body weight - so e.g., if you weigh 63 kg, you need around 100mcg levothyroxine (some people need more, some need less but it gives a good ballpark figure). This is also documented in the NICE guidelines under titration:

cks.nice.org.uk/topics/hypo...

Your TSH was probably low, this is why your GP has lowered your dose, which he should not have done, as dosing by TSH alone can leave patients under-replaced. The normal feedback loop of TSH-T4 is not always working in patients with thyroid disease, so if you are taking levothyroxine, even small amounts can lower your TSH by quite a lot, even though your actual thyroid hormones could be still low (and giving you symptoms!). Therefore the TSH should be seen as a more supporting role and the free T4 and free T3 should guide treatment decisions.

I would also suggest that you do a private thyroid function test to see where your T4 and T3 are - and I suspect that they will be low. You very likely need an increase in your medication.