Why do doctors love levothyroxine?!

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Hi, this is a combined question with a rant attached!! I've been on high doses of levothyroxine for the last eight years and as the doctors kept increasing the dose the worse my symptoms got and they eventually diagnosed chronic fatigue syndrome (which I am dubious about).

They have now decided I don't need as much medication (if any) as there doesn't seem to be anything wrong with my thryoid (just a little small due to the meds). I find it a strange coincidence that I'm on much lower doses and starting to see a very slight improvement this week.

Whenever I suggest to my doctors that levothyroxine is making me worse or that NDT/natural hormones might be a better way to go they always brush it off saying it's not the case!

Is it possible for the medication to make you worse? I'm sure I've heard others with similar experiences of levothyroxine

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  • Posted

    Hello Caz:

    Way back in time they only had the NDT's and all was fine.  However, as pharmaceuticals companies got into designer drugs made for a special condition like BP, and Epilepsy, and thyroid disease.

    These phamaceutical companies have Rep's that go to doctor's offices and tell the doctor plus prescribe this drug.  They Lobby the doctors and in some cases under your countries formulary get to be the "ONLY ONE". 

    I once went into an Endo's office and everything was "Compliments of Synthroid" (LEVO in USA), posters on the thyroid, coffee table, mugs, display items, & even right down to the liner on the exam table!!! 

    Back in the day, they would give the doctor perks for prescribing the med.  They would give trips and money and dinners etc....not so much now but they give the doctor items for their office.

    It has to do with money mostly.  You scratch my back and I will scratch yours, attitude. Backroom deals made between hospitals and the maker of the drug also.

    Now they do it with Diabetic Insulin's also. So it is wide spread and a big business for a drug maker.  It is not right, I know.  Can you write the head of the UK system a letter?  I don't know, worth a try.

    In the UK, it is a socialized medicine and you really can't fight them.  So some ladies spend their own money to buy what they need to help themselves.

    NDT is a fine medication and has been a proven med for more than 100 years.  It is good and safe and is not hard to dose at all.  Doc's are into  doing the easy way out and some are just stuck on a medication and "can't think outside the box."

    MD stands for "ME DOCTOR" is an old joke, and unless they have empathy they only will do what they like to do or their hospital says they have to do. Private Doc's are not bound by that.

    Regards,

    Shelly

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    • Posted

      Hi shelly it's really bad isn't it and I know doctors in the UK are put under so much pressure to give levothyroxine and they aren't supposed to tell you that other treatments are available! I was refused liothyonine once because they just blatantly said it was too expensive!! Oh I do apologise that my health is getting a bit costly for you!! smile

      I wrote to my local MP about the diagnosis and treatment of hypothyroidism and asked for it to be reviewed, but the health secretary wrote back to me saying that levothyroxine works for most people, we aren't going to change anything. I bet it doesn't work for most people (or not as many as the doctors let on!)

      I will be spending some time to issue a response to his letter, but it's difficult to know what to say without getting emotional about my own situation. I want to be taken seriously. So many people have advised me to sue after all the mistakes doctors have made with me.

      I just don't want the same situation to happen to someone else- you see a lot of people on this forum saying that their results are borderline and they haven't been treated. But mine were borderline and I was overtreated and now suffering horrible withdrawals trying to come off the stuff! Seems that doctors rarely get it right with thyroid

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    • Posted

      Hello Caz:

      Are you allowed to sue the NHS?  My understanding is it is very hard to do.

      What you could do is see a solicitor (lawyer) and tell him about your case. If you were in the USA, 20 Lawyers would be at your beck and call. They would have sued the doctor and you would be given money and treatment for what they did to you.

      Socialized Medicine is a Gov't program and you pay via taxes but YOU GET WHAT THEY GIVE YOU!  No frills.  USA is a pay for service and we can sue.  UK in my understanding unless gross neglience (which I believe you have), may give up that right.

      Tell Mr. Hunt what happened to you and that as a CITIZEN you deserve proper health care.

      They misdiagnosed you and explain all of that as best you can and say what it did to you. Ask for an exception and empathy under this sysytem. If all else fails threaten to sue.

      XO,  Shelly

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    • Posted

      Hi shelly,

      Yes you can sue the nhs for medical negligence. They need to follow proper procedures as a private doctor would, so if they haven't followed proper procedure then you have every right to pursue them. But yes, I agree I think it would be difficult to prove anything in a lot of cases unless it was cut and dry.

      In my case, I didn't have hashimotos and they didn't bother doing any other tests including mineral panel, ultrasound, iodine and they just put me on a high dose of drugs and sent me on my way. I went back several times over the years saying my symptoms were worsening and they just increased the meds (without even checking my levels first because they were trying to cut costs by only testing them once!!).

      Despite going back to them they never thought to refer me to an endo and eight years later they decide to run some tests! I wish I was more knowledgeable about this back then. But you trust what the doctor is telling you is correct!

      Yes I will write back to the health secretary although he hasn't got the best reputation in the UK so I won't hold my breath for any changes soon!!

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    • Posted

      Hello Caz:

      Under the law, that would be gross neglience as they did not do a TPOA, or Tgab test Ultrasound, ESR test, etc...you would need all of your records and have to give them to a solictor or lawyer. However you would have to be quiet about sueing so records do not disppear.

      Records can be expensive to get also. As in some places they are allowed to charge per page!

      Also some media journalists like a story like yours and it exposes bad doctor's or inept ones, so that can get you a lot of help as NHS will be on camera about this mess.  So you may be better off telling you story to a reporter, as it gets attention fast! 

      Keep me posted,

      Shelly

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    • Posted

      Hi shelly, I hadn't even thought about talking to the press about it. However they do say that thryoid conditions aren't "sexy" (they don't get the press of other major conditions like cancer, for example) and my situation is quite complex. I guess it's worth a shot?!

      I would hate for this to happen again to someone else but I'm positive it will.

      My Gp applied and received the notes from when I was diagnosed and he gave me a photocopy to give to the endo. I still have this copy somewhere so at least I have the important stuff!

      I haven't mentioned to anyone I was thinking of pursuing them. Im going to seek some advice to see whether I would have a case first.

      This week my heart rate has gone crazy and I'm starting to feel like my thyroid is starting to work again. I finally have a bit of motivation to fight this smile

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    • Posted

      Daily Mail has previously run an article on the scandal of levothyroxine versus NDT, so they may be interested.
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    • Posted

      Hey shelly just thought I would let you know I spoke to a solicitor today and they won't take my case unfortunately. They said it would be difficult to prove that I didn't have a thyroid problem in the first place and they said you have three years to bring a claim to court following an incident. As this has been going on for eight years I would have to prove that I didn't know they were in the wrong for that whole time (even though the mistakes were their fault and not mine!) the fact that I kept going back to the doctors would actually go against me (go figure!)

      The solicitor are going to send me a letter with the complaints procedure for the nhs - even if I can't pursue this, I would hate for another person to go though this unnecessarily. Also drafted a letter to the health secretary so hoping some good may come from my misfortune!! smile

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    • Posted

      Hello Caz:

      In the USA you have 2 years from the date you find out  or learn about what happened to you to file a lawsuit. 

      I hope the complaints procedure will help you out.  It is so unfair for them to deny an NDT because of the formulary and the Unlicensed med rule.

      Shelly

       

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  • Posted

    I also believe it is because it is cheap to buy and the GP sugeries don`t have a choice when ruled by the NHS.

    Look on line it is about 6p a tablet and they will get it much cheaper than that.

    Basically our whole lives are ruled by how much something costs and we are just a number in the system sad

    Rose

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    • Posted

      Yes I was told levothyroxine is very profitable for the nhs, which is probably why jeremy hunt sent me a letter dismissing any issues with the medication or current diagnostic procedures in place! But I will still fight that argument!!
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    • Posted

      Hi caz, have a look at the NICE guidelines for treating hypothyroidism. Take it line by line and state what they did or did not do in your case. For instance, how does it say hypothyroidism should be diagnosed? Were the tests it says should be done, actually done. What tests should be done to confirm medication dose is correct and at what frequency?

      Also register for your GPs online system. Ask what access the surgery allows you to have to your patient records. My GP's online system has menu options to access 'summary patient record' and 'patient record'. Surgeries differ, some will allow access, some won't. Mine won't, my daughter's will give access to the summary.

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    • Posted

      Hi Barbara, Thanks for the advice. Just tried searching for nice guidelines and couldnt find anything unfortunately.

      There are a couple of websites which suggest that the type of thyroiditis that the doctors are suggesting "may" have caused the initial slightly elevated Tsh, is often only temporary and usually doesn't require treatment (burst into tears when reading this). It says if they do decide to treat it, the levothyroxine should be in the form of a trial rather than a permanent course of treatment.

      My current surgery only just applied for the medical records from the point of my diagnosis. I have a copy of all the notes from around that time. My Gp said my Tsh was only borderline and there is a comment on my file saying "iodine deficiency??" which they didn't bother looking into or testing. Just guessing!

      I can't believe in this day and age that these things are so poorly understood. The endo I saw didn't have my medical records and just looked at me saying you are too small to be on such a high dose, I'm wondering whether you need any at all! He said that caused my hair loss too. He was right though. Im down to 50mg from 150mg and ready to do another drop.

      Such a shame they didn't refer me straight away, but I don't think they are obliged to unfortunately.

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    • Posted

      Hi Caz, I've found this from the royal college of physicians...

      The diagnosis and management of primary hypothyroidism

      I'll put the link in the next message. This way you can search on the title whilst waiting for the link to pass moderation.

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    • Posted

      Caz, when you decrease your dose further, to avoid the withdrawal symptoms and to give your thyroid chance to adjust, decrease by a quarter of a 25mcg tablet every 2-3 days.
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    • Posted

      Hi Barbara thanks so much for the info I will take a look!! Yes that's a good idea about the dose- just started doing my next drop and reduced the dose by 12.5 instead of 25 and only taking the reduced dose every other day. I'll probably do what you suggested though to try and make it even more gradual. Thank you for your help x
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    • Posted

      Barbara this is great thank you! It says patients with ongoing symptoms after being treated with levothyroxine should be further investigated to find the cause (which they didn't in my case). Should give me some back up!!
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