Quashing all ridiculous thyroid questions/statements

Hi there, When I was born the cells in my thyroid didn't develop essentially resulting in me being diagnosed as Euthyroid. I've come on here as I was talking to a friend and googled things for them and discovered this page along the way.

As someone who now sits on 225mcg at 29 years old, I can honestly say that if you don't take your meds and think a herbal/natural tablet is the way to go then God help you!!

I'm not an expert or medically trained but trust me not talking your tablets for what ever reason is ridiculous... PERIOD! I will forever be on Levothyroxine and have got to know my body well enough over the years to know if somethings not right. Everyone is different so no one can compare. If I miss a tablet or 2 then I feel the affects after THREE days. So this whole thing about 6-7 day/ 10 day half life is a guide only.

If you have been placed on them then you will never come off of them. All medicine has side affects and no 2 bodies are the same so comparing won't help anyone.

Have regular blood tests. I used to go every 3-6 months now I'm yearly unless I feel different/ill just to keep an eye on it.

It is your responsibility to have regular blood tests, the doctors are not responsible for your well being unless you have a mental disability.

8 Replies

  • jj87, is this a response to someone in particular - a past thread? Because, done like this, the person is very unlikely to see it and/or realise it's intended for her - you haven't even put a name. And, that would be a shame after all your effort to write it. Can you copy and paste your reply into the post concerned - or send the person concerned a PM to let them know you've replied? :)

    Oh, and 'euthyroid' means there's nothing wrong with your thyroid, is that the word you meant to use?

  • jj87, welcome to the forum.

    I don't think you'll find many people disagreeing with you. The people who come on the forum and say "I've stopped taking my levo", or "Do I really have to take levo?", or "I want to find a natural alternative to levo" are not that common and are usually in the early stages of being treated. But I can understand why some people find it hard to accept that they need to be treated for life, and it seems to be a perfectly sensible thing to do to go seeking alternative views on something they may not understand to begin with. I'm guessing that the vast majority of people who go looking for alternatives will eventually realise that they have no choice and will just get on with it.

    As for blood tests - in the UK it can be extremely difficult for some people to get a diagnosis of hypothyroidism at all. Many doctors think you are a malingerer if you complain of symptoms with a TSH below 10, although there does seem to be a slight shift recently, with some doctors treating when TSH is above 5.

    Once patients have blood tests the doctor is happy with (note - the patient's feelings are often regarded as irrelevant) they are told they don't need to be seen by the doctor any more, they just have to have annual blood tests. Anyone asking for blood tests more frequently may well be told they don't need them.

  • NDT is not a 'herbal' tablet. It is a prescription medicine.

    I for one will never take anything else.

  • I did wonder whether "herbal" tablet referred to NDT but decided to take an optimistic view and assume it didn't. But now I'm wondering again...

  • Me too :-(

  • Euthyroid was the original term for when I was born. They have now changed it to "Congenital Hypothyroidism". I understand that the Internet also says about Euthyroid is basically your are fine with no issues but that was not the definition when I was born.

    Also reading the Internet for advice is never a good idea. I had merely just been on something for a friend and read a post where a 19y/o had just been placed on Levo and didn't understand everything and it upset me seeing all these posts about how "one day you can come off of them". I've been through my fair share of doctors who didn't know much about it and many who still don't but I wanted to make sure that those who are on it now understood that they will forever be on it.

    It's not something that affects your life long term ONCE the dosage is correct which is easily done with discipline in relation to taking the pills at the same time every day (if you don't take them everyday then I'm sorry you've only yourself to blame).

    I've personally taken mine in the morning and felt I get better results from doing so. If I take them at night I feel like I've been hit by a truck that's then backed up over me. Also I've personally taken them before food but not necessarily waited 4 hours after before eating again. It's your body... Experiment and see what fits for you.

  • I had merely just been on something for a friend and read a post where a 19y/o had just been placed on Levo and didn't understand everything and it upset me seeing all these posts about how "one day you can come off of them".

    I've never seen such nonsensical comments on this forum. (Edit : Or if you do they don't usually go unchallenged.)

    One thing to bear in mind... Your thyroid problem was discovered in infancy. You haven't spent years untreated. There are many people on this forum who struggle for years undiagnosed, untreated, under-treated, dismissed, put on anti-depressants, anti-anxiety meds.

    You can't really take your experience and apply it to everyone else with underactive thyroid, because you aren't necessarily comparing like with like.

  • Unfortunately a lot of people take their tablets properly, leaving an hour between eating, never miss a dose and are very disciplined and still have major problems. You're very lucky to have had it straight forward and it may be because you still have your thyroid. Some people on here have had theirs removed and their experience may be very different. They may be much more sensitive to tiny changes. There is a lot of factual scientific evidence about the instability of levothyroxine and a history of manufacturing problems so anyone who says they have problems on the tablets has most likely been affected by the tablet instability or they may have genetic differences that make it difficult to extract and utilize the drug. It's a complicated business. I do hope you continue to sail along without any problems because for some, life has become an intollerable and distressing nightmare. That's why this forum is so great because we can help each other to get better.

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