Dr. Melnick discusses alarming article from Harvard about the use of the TSH and thyroid treatment!

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  • Excellent...i like the bit about regulating and treating based on tsh results...it says...patients re likely to die of old old before they are symptom free....

  • As I read the article I had a mental picture of Janie bouncing up and down, goading Dr. Melnick to slag of Prof. Garber and Ms. Godman. I was disappointed at his restraint :-D

  • Looks like a fundamental difference in prescribing has perverted the story. We typically get prescriptions for one or two months (though some do three months or more). Melnick bases 23% in the UK on one prescription per patient per year - where we would be more likely to get six or more.

    (assuming one prescription per year per individual patient)

    Typical GP surgery statistics show the numbers of people prescribed thyroid hormone it be nearer one tenth of that - 2.3% or so.

    There is much to agree with.

    In my book, the idea of a single annual blood test being the only thing that governs treatment is utter madness. Even if your TSH levels normally fairly accurately your thyroid hormone levels and, even, overall well-being, you only need a blip for some reason in the few days around your blood draw to get messed up for a year.

    Rod

  • I agree. Diagnosis and monitoring should begin and end with symptoms - the relief of! Patients should be advised to request blood tests if their symptoms resume.

  • Some of the best treatment, and understanding seems to come from doctors from over the pond, can't we import a few of them . . . if we all club together, we could make them an offer they couldn't refuse :-)

  • They have their fair share of dorks. I was cheered to read about this GP pulsetoday.co.uk/when-treat...

  • I saw a decent doc abroad who said she'd like to have a look at this forum and maybe give people a hand. But then she opened a posh new surgery at a fancy address and I suspect she will not be easy to reach in future. :-(

    Seriously if you read the US thyroid forums there are a lot of bad docs there and a lot of suffering patients. The difference is that they're not all tied to the same rigid protocol as here, so there's a broader spectrum of treatment considered to be fairly mainstream, whereas here t3 is the outer limits and ndt is witch doctor territory. :-)

  • Posh doc could still learn from this forum and benefit her patients. Many patients get crap treatment even when they're paying through the nose for it.

  • He is also correct that treatment using dessicated pigs thyroid is far superior to synthyroid/ thyroxine

  • Not for everyone though, Louisa. Thank goodness combi T4+T3 seem to be working for me.

  • When we talk of palpitations does that come from t4 or from t3 once its been converted. My palitations got worse once my tsh wa very low at the same time my t3 wa raised.

  • In my case, T4 causes my palpitations. T3 calms them. i also get palps when i haven't eaten & if I haven't slept.

  • Makes sense as im onlt on t4 thanks

  • makes sense as im only on t4

  • makes sense as i only take t4..thanks

  • My response to T4 and T3 was the same as Clutter's.

  • Clutter, if you don't mind my asking are you taking syn T4+T3 or NDT and what has your experience been with the different thyroid medications. PR

  • Of course, I don't mind you asking. I've never taken NDT. I was on 3 x 20mcg T3 inbetween surgery and RAI, then bunged onto 200mcg T4. Over replaced to suppress TSH. Took 18 months to reduce dose to 100mcg by which time I was diagnosed with fibro, COPD and had so many other symptoms I was 90% bedridden & was seriously contemplating suicide.

    In Aug 13 I had a disastrous endo consult and FT3 was below range and endo was happy with my thyroid. I started self medicating & dosing with T4 & T3. Stopped T4 in Sept. Some improvement in symptoms but not enough. Stopped all meds in Nov for 4 weeks to detox. All the adverse symptoms resolved within a couple of weeks. Felt wonderful (comparatively) but TSH was 107. Was also deficient in vitD and folate and low in B12.

    Resumed T4 in Dec and palpitations started after a couple of days and other symptoms started to return after five days so I added in T3. Absolutely did the trick and continues to do so.

    ps my reply to ReallyFedUp alluded to several people who've said they were unable to tolerate NDT, not me.

  • It has always been fascinating to me how varied we are in our reactions to the various thyroid medications. It would be a tremendous insight if science had any real understanding of why the reactions can be so different. Thanks for giving me the overview. PR

  • It would be a huge step forward if the medical profession knew and accepted this as well. There are so many barriers preventing progresses whilst we suffer.

  • It would have been helpful if the two endocrinologists I see had listened to what I was saying and made the connection between over replacement and symptoms. I can't believe I'm the only patient to have suffered this way. I managed to work it out for myself. You'd think they could have done so before I became so ill and desperate.

  • Yes, I agree, this seems to be the one of the major problems of modern medicine, doctors just do not listen, or pay attention, to their patients. I wish I knew how to change that. PR

  • makes sense as i only take t4...thanks

  • I stopped using Levothyroxine after 5 years and declining health every year with the severity and range progressing from muscles not working, to the whole gambit of Hashimoto's throws at you to eventual serious eye problems, Sjogrens starting, diabetes 2 starting and mental degradation to the point of personality change, paranoia and inability to function. Levothyroxine caused or made worse my Idiopathic inter-cranial hypertension. (Which with the correct MRI done... ordered by an endocrinologist) I could not have been in much worse shape... but I had been forgetting to take the levothyroxine on and off and noticed, I was starting to get better but my doctor noticed to and increased the dosage. In conjunction with this she had me start a natural statin, along with a B12 deficiency it just was too much. I was so mad I stopped levothyroxine...went to lower dose, then every other day then once a week and now none. I am so happy to wake up and recognize in my mind and my heart I am me again. I am functioning again, I have lost the headaches, the eye problems, the muscles being turned off, and my body has gone back to just attacking the original sites. Now, I start again from scratch, looking for the root cause and not adding all these additional things. I refuse to take that drug again, nor any other, better to die sooner with my brain than live longer not even knowing who I am. Beware people, trust your bodies, research all you can, use all the natural foods and medicines to help yourself, and never believe you have to take a drug for life. I had been told I would have to take hydro-cortisol for life too which luckily my doc found out was wrong too!!!

  • Cady,

    If you need thyroid hormone replacement but Levothyroxine doesn't suit you there are alternative thyroid hormone replacements. They are not generally available on NHS and you may have to pay for private prescriptions or buy online and self medicate.

    Some of us do not have a thyroid or the thyroid doesn't produce any hormone so we do have to take replacement for life. Without replacement we will die.

  • I was taking Levothyroxine for 8 years and never did it improve any of my symptoms, and instead I got more autoimmune diseases and many serious side effect problems. I am so totally happy for the people that Levothyroxine works for. I know a few and they do wonderfully. I posted so people would be aware and to try other thyroid options. Years of some symptoms have gone away now. I am back now at the root beginnings of symptoms. I am functioning again and trying to regain strength. With my muscles having been turned off so long the neurologist said it is like an invalid, take it slow and easy. I am very much aware of what the outcome may be for me if I do not find an alternate thyroid treatment that works... but, I much prefer being myself than living in a mental institution where I was headed if I had continued. I have no answers for anyone, I can only say what I experienced and after all these years it took something so grievous and scary to stop it. I have taken Levothyroxine three times since then in my starting dose amount and each time my head swells. Before I never thought it was the drug, I thought it was the disease. So, it does not work for everyone. Talk with your doctors if you suspect you may need to change.

    Here in France the only drug I am told that is allowed is Levothyroxine. It is not permitted to order prescriptions or drugs through online pharmacies in any country. So...I have no choice but to see what happens....I will test again soon and I am interested what the outcome says. I was told also, I would have to be on Hydrocortisol for life too, but because I hurt my foot (plantar fascia torn), I had to stop it because it does not allow your body to make collagen well, which is what the plantar fascia needs to rebuild itself. My doctor tested a lot to see if I had enough, and she concluded that although she did not know where my body was getting it from, it was in fact getting it. Our bodies are truly wonderfully created things. She and I agreed that we think our bodies do have redundant systems for getting things it needs. Science just does not know all these yet but they are learning a lot now.

    I SAY THIS AGAIN, I AM NOT TELLING PEOPLE TO STOP THEIR LEVOTHYROXINE TREATMENTS!!! I AM SAYING IF YOU ARE NOT GETTING RESULTS OR SUSPECT SIDE EFFECTS TALK TO YOUR DOCTOR ABOUT SOME OTHER ALTERNATE DRUG. I made this in capitals not because I am yelling or angry, but to make sure you realize it is important. Never do something just because someone else says it. Your body is unique to you alone. It is not the same as mine, or anyone else's, even though we share some of the same symptoms, so pay attention to yours.

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