under active thyroid

[Brahmstokerdracula]

Can anyone help me i came off Levothyroxine seven weeks ago my dr advised it i couldn’t tolerate them. I am going back for another blood test and was wondering what is the best medication in your opinions. Thank You.

[helvella Administrator Thyroid UK]

Can you add a bit more about your background, your dosing your blood test results (including reference ranges)?

It is quite difficult to make a coherent story from the limited information.

[Brahmstokerdracula in reply to helvella]

Hi i am 72 i have no information sorry my dr told me nothing i live in England.I had a normal blood test and the doctor just told me it had come back fine apart from my thyroid.He put me on levothyroxine and i had a test two months later and it came back fine. I was on 50 mg but the side effects were horrendous so he just said stop taking them.Thank You

[helvella Administrator Thyroid UK in reply to Brahmstokerdracula]

You are entitled to get all your blood test results. It should be as simple as asking at reception.

Do you have the NHS App? If so, you might have access to these things through that.

It is very difficult to even guess what happened so we find that blood test results are very, very helpful.

[birkie in reply to Brahmstokerdracula]

Can I ask what side effects did you have whilst on levothyroxine?

[Brahmstokerdracula in reply to birkie]

Hi where do i begin i had a a very bad headache and my head felt it was in a vice i also had bad tinnitus.I was shaking al over and had muscle spasms my whole body was itching nonstop and with pins and needles.I had no appetite and lost a stone and a half couldn’t sleep at all. Palpitations i once had them so bad i thought i was having a heart attack and almost phoned 111. Feeling very dizzy and fog brain I was crying emotional and i honestly was so ill i thought i was having a breakdown.That’s all i can think of at the moment hope it helps you.

[birkie in reply to Brahmstokerdracula]

Similar side effects to me, but I also had bad gut issues my head was bursting every morning Similar to a very bad hangover. I also had a metallic taste in my mouth especially in the morning ..my skin bubbled up and was so itch I scratched till I bleed .

I'm no longer on the synthetic t4 levo now and I'm on ntd private prescription and all those horrid side effects have gone...👍

I know it was definitely those synthetic thyroid hormones that caused all the problems, I felt like I was taking poison 🤮🤮🤮

[Brahmstokerdracula in reply to birkie]

I hope my doctor will be able to find a medication that suits me.The side effects were horrific weren’t they so glad you are feeling better.

[RedApple Administrator]

Brahmstokerdracula, How much levothyroxine were you taking before you stopped it?

Most people do well on levothyroxine, BUT it does take quite some time to get the dose right. Doctors typically start you off with a low dose, and then gradually increase the dose until your levels are good and you feel better.

[Brahmstokerdracula in reply to RedApple]

I was on 50mg but the side effects were really bad i almost went to a-e i was very poorly i lost a stone and a half in weight i had no appetite i couldn’t sleep i had every symptom.I phoned my doctor. almost every day telling him how i felt he just told me to stop.

[SlowDragon Administrator]

what brand of levothyroxine were you taking

Many people find Levothyroxine brands are not interchangeable. And some people can only tolerate one brand of levothyroxine

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

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.

If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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...

[greygoose]

In answer to your question: there is no best brand, there's only what suits you. And if the brand you're taking doesn't suits you, your doctor should have suggested to try a different brand, not stop it altogether, because if you're hypo, you need thyroid hormone replacement, which is what levo is.

The active ingredient in levo is the thyroid hormone T4. Hormones don't usually cause side-effects. But the ifllers in the tablets do. And different brands have different fillers. Doctor don't seem to understand that.

That said, the 'side-effects' you mention could very well be hypo symptoms. It's not uncommon for hypos symptoms to get worse, and new ones to appear, when you start thyroid hormone replacement. They improve as the dose is raised. 50 mcg is only a starter dose, should be increased by 25 mcg every six weeks until you find your 'sweet-spot'.

Doctors will never just hand you your results because they'd rather you didn't know! That way, you can't argue - or even have an informed conversation, because they are totally out of their depth. But, the law says you're entitled to a print-out, so ask at reception. They can't say no. You need to know exactly what was tested and exactly what the results were - we can help you understand them. For example, were any nutrients tested? Vit D, vit B12, folate, ferritin? All these need to be optimal for levo to do its job. How about antibodies? Doctors can be very skimpy with blood test, and often need... encouragement to do the right ones.

[Brahmstokerdracula in reply to greygoose]

Thank you like you said Drs can be very ignorant on this subject i wasn’t offered my results he just told me over the phone where i live since covid you can’t get to see a doctor. I was told to just stop taking them i knew myself it was wrong i should wean myself off them. They just don’t seem to care about you i have an appointment for a blood test not until the 29th of August. It will be exactly two months since i stopped taking the Levothyroxine can you please tell me what should i ask about if it comes back positive.Im sure it will i don’t feel good i am so tired all the time and have done two diy tests that turned out positive.Thank You Very Much. I forgot to mention i was never offered another brand.

[samaja in reply to Brahmstokerdracula]

Can you clarify what you mean by 'have done two diy tests that turned out positive'? What tests and what turned out positive?

[Brahmstokerdracula in reply to samaja]

I am waiting to see the doctor for another test it has been two months since i had levothyroxine so they will be out of my system.The test is very similar to the covid test you prick your finger add some blood you add a substance i don’t know what it is and if a line appears you have a under active thyroid. You don’t take them to show the dr you just dispose of them

[samaja in reply to Brahmstokerdracula]

I think you have done enough testing to know that you are hypothyroid so I would not wait for another test but just get to your doctor and ask for another brand of levo asap.

[Judithdalston]

when trying different brands of levo. it’s often easier to befriend your pharmacist rather than explain to a GP , mine has put ‘no Teva’ on my pharmacy notes, plus keep a diary note of which brands you are on with any symptoms…it might be the fillers in the pills rather than the levo.that upset you.

[Brahmstokerdracula in reply to Judithdalston]

Thank You i am definitely going to ask for a different brand the doctors just put everyone on Levothyroxine because they are the cheapest brand.

[Judithdalston in reply to Brahmstokerdracula]

Levothyroxine is just the name of the replacement hormone not a particular brand…it does mean the prescription is able to be filled by any pharmaceutical product all made with the levo.at its core but lots of other ‘fillers’ to produce the actual little round pill…some of these fillers might disagree with you eg lactose if you can’t take dairy. I don’t think acacia in Teva agreed with me as absorption seemed very bad the month of consumption. Slow Dragon’s compilation on all the levo.brands and ingredients is extremely useful if you suspect a particular prescription to be ‘off’, there are much purer liquid levo. too. It is possible as suggested above it might be that your hypothyroidism was actually more apparent with your first levo. doses, and what your body was crying out for was a dose increase. Get your blood test results and you’d have a better idea what was happening.

[Brahmstokerdracula in reply to Judithdalston]

Thank You i will wait for my results. And i will let you know.