reduction of meds

I was diagnosed 2 years ago with an under active thyroid.When I had my last blood test the doctor told me they had over prescribed so he reduced from 100 to 75.This has happened before. 8 weeks later i notice all my symptoms are back, Exhaustion,flaking nails , constipation, etc.......I mentioned this to doctor friend of mine whose response was, well of course you would like more it's like heroin makes you feel great !! Why do they rely on the test and not listen to how you feel. do others have this problem?

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  • Yes jabot. The doctor is probably trying to keep you within the specified range. Some people function better when out of range like myself.

    I asked to see an endo who let me take enough Levothyroxine to keep my THS suppressed (that is just under range).

    You need to get your results and post on here and others who are more informed at reading test results will advise. Make sure you get the range for each test as well (numbers in brackets).

    It is also advisable to ask your GP to test you for antibodies, Vit D, Vit B, Folate and ferritin as they also determine how your body can use the Levothyroxine.

  • Thanks for this , I have made an appointment for tomorrow so I will ask for the results of previous levels and request the test you recommend.

    This is a really useful site.... I now realise so many problems i have are related to the Hypothyroidism.Though I was just loosing the plot !

  • I mentioned this to doctor friend of mine whose response was, well of course you would like more it's like heroin makes you feel great !!

    When I read something like this I'm just glad this has never been said to my face. I don't think I could be held responsible for my actions.

  • HB, A smack in the face often offends so I'd swiftly become an ex-friend. As soon as Levothyroxine's doing its job and making a patient feel well a doctor seems to consider the little white pill akin to recreational drugs or heroin ffs and wants to reduce dose so the patient feels lousy. I really despair :(

  • I have had at least a couple of occasions when I believe I have been slightly over-medicated - always in connection with changing levothyroxine product. Far from getting anything positive out of that state, I absolutely hate it. For me, the idea that it would make me feel great it total nonsense.

    (With experience, I have found that my TSH has been stable, changing only slightly over long periods. Not suppressed - actually above 1.0.)

  • Would that it did make you feel great, but it just about keeps you going - in pain and foggy headed mostly!

  • Whaaat? Remind me never to try heroin, then, if that is all it has to offer in the feeling great stakes!

    The first doctor I saw who put me on the levothyroxine told me that models buy this all the time to lose weight. I've gained 1.5 stone on it in 3 months.

    What a load of codswallop some doctors talk, doesn't really inspire me with much confidence tbh :-(

  • Think your Doc is confusing T4 with T3 - he obviously wasn't listening in class when they had the 15 minute lecture on the Endocrine System :-( When T3 was used for depression in the 50's - I believe - some people realised they were losing weight so upped their doses and then had palpitations. Hence T3 commenced it's poor reputation as a trouble maker !

  • Hope you've taken your doctor ex- friend off your Christmas card list for that one! What a nerve - but an interesting insight into how some people think.

  • Some friend Jabot - What an arrogant idiot !

    I'm not sure that they are allowed to reduce medication without consulting the patient - Rob posted something sometime ago, which was helpful. My GP tried to reduce Levo. I said that I was puzzled as to why the reduction when I'd been so well and was not given a satisfactory answer.

    There followed a long embarrassing silence.

    I eventually said, "I will try the lower dose and see how it goes but please don't reduce the prescription....it has taken a long time to regain my health and I'm reluctant to go back to feeling ill. I am well on this dose, able to work and walk long distances, but, if you reduce the dose, I'll be back on PPIs, cholestrol lowering and heart drugs, which deplete B12 and will produce further problems. I will take full responsibility for the higher dose - in writing, if necessary."

    Thankfully, the surgery seems to have given up trying to reduce it ever since.

    Hope all goes well for you.

  • They can reduce medication whether the patient likes it or not, but they should at least discuss it with you before they do. You can refuse an increase in medication, but you can't prevent a doctor from decreasing your medication if he/she thinks it is in your best interests to do so.

    You can argue about it of course, and some doctors may be persuaded or bullied into not changing it. But others will reduce medication and won't care about the effect on the patient.

  • They don't care about the patient, they're more worried about being sued. Here's an extract from a previous post:

    Section 2 of the Health Act 2009

    " (a) The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.

    (b) The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments

    are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.

    (c) The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all. "

    healthunlocked.com/thyroidu...

  • Thank you for this info, Polaris. I have to say, it doesn't sound like a description of many of my appointments with the medical profession to be honest, but it is nice to know how things are supposed to work.

  • Ha ha! Is this fiction you're reading here? In the days when I was medically ignorant, I used to be put on stuff without having any idea what it was, no discussion, no explanation, nothing. Doctors can't be bothered with all that. Besides, how much discussion could there possibly be in a five minute consultation!

  • But Polaris, that is just what they want! They want us to be on PPIs, and statins, and as many dangerous, expensive drugs as possible. That's the way they line their pockets. If you still believe that doctors really have our best interests at heart, you're living in Cloud Cucoo Land, I'm afraid. x

  • I'm talking about more than twenty years ago GG that I was put on these meds, before I finally diagnosed myself, asked for tests and was found to have Hashimoto's - thankfully, information became available on the internet and I also found this site.

    Yes, it's all run by BigPharma and I'm in no way advocating their drugs - quite the opposite as, if you get the Levo or whatever thyroid replacement you need, you don't need these dangerous drugs !

    I also have it from the horse's mouth (a GP) that they are afraid of overdosing and being sued. I know now that this is what's uppermost in their minds.

    After a long and frustrating battle, to get the B12 injections my relative needed, (after they wrongly diagnosed dementia and ME), I had to again reassure them we were not about to sue for overdosing - (they don't even know you cannot overdose on B12 anyway - for so called intelligent people, they are remarkably stupid if they can't keep up with latest research).

    I have cynically come to the conclusion that it is often useless quoting guidelines or factual information to GPs who won't listen and, to avoid stress and get a life, you have to get what you need any way that works,

  • And it did work - my relative now receives regular B12 injections and has her life back. I now have the optimal dose of Levo I need and have hopefully avoided further battles about reducing it and my heart, liver, brain etc. are now much healthier !

  • Thanks for that...i when to the Docs yesterday and explained how low i was now feeling on the reduced dose..she agreed to test my thyroxine levels and include tests for B12, folate etc. when I asked if she could put the dose back up to 100 even if the results were in range she said no, she would only get in touch if there was a problem. I pointed out politely that I am here because there IS a problem.

    I have made an appointment to discuss the results with a different doctor!!

  • Good for you Jabot. I really hope they will listen and return your dose to 100.

  • jabot, you have only just joined us and your post has created quite an intense discussion here but do not be alarmed. Remember people are here because they feel ill like yourself.

    Your next step is to approach your GP for the tests and then post results on here for further discussion...hopefully not so heated next time lol.

    In the mean time if you want to move forward in a positive way, I have found eating a gluten free diet to be extremely beneficial. If you prove positive for antibodies your tummy will thank you for it anyway.

    Also it is a good idea to educate yourself. My two bibles are "Stop The Thyroid Madness" and "Your Thyroid And How To Keep It Healthy".

    There is a lot of info out there if you go looking. Knowledge will enable you to make informed choices later. I was genuinely interested to found out everything I could about hypothyroidism when I was diagnosed 4 years ago.

    Hope you manage to feel better soon and welcome to our forum.

  • Thanks Flower, I've spent quite some time today reading all the tips and suggestions from fellow sufferers and I read the link to pernicious anaemia,I am now armed with new info to take to the docs tomorrow.... cheers to you all !

  • This doctor friend of yours obviously doesn't know that the point of thyroid hormone replacement is to get rid of all your symptoms and make you feel well. It is definately NOT just to keep your TSH in range - which is what he, in his ignorance, seems to think. Stupid answer! Don't you just want to smash them in the face!