intollerance to throxine

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whiteley
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Joined: Mon Jan 16, 2012 9:31 pm
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by whiteley on Thu Jan 26, 2012 8:01 pm

intollerance to throxine

how would i know if i am intollerant to tyroxine.i have been on it for 7 years for my hypo never really had any problems till last year became very ill couldent eat not able to get out of bed arms and legs weak tierd felt sick all the time. gp decided i was deppressed even with tsh at 12.80 t4 14.60 .over the year i started to get better but am now left felling unwell everyday feeling sick cold all the time massive hugrey feeling headaches tierd spine and elbow painful and also my knee .have days when iam so tierd dont seem to function have a fulltime job to hold down last blood test was tsh 5.19 t4 16.4 t3 3 .3 meds increased to 150mg taken with125mg alternate days .i stillhave seen no improvement in my health.i am also taking hrt could i be intollerant to the tyroxine.also my thyroid is painfull and i sometimes find it hard to swollow ....i have never ever been this bad.

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Dr Petros Perros
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Joined: Tue Jan 17, 2012 3:29 pm
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by Dr Petros Perros on Sat Jan 28, 2012 10:16 am

Re: intollerance to throxine

I am sorry to hear that you are not well. Your symptoms do not suggest that you are suffering from intolerance to thyroxine. Very rarely people can develop reactions to some of the binders that are found in thyroxine tablets, but your symptoms are not suggestive of that. I hope you get better.
Dr Petros Perros
Consultant Endcorinologist

ipman
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by ipman on Sat Jan 28, 2012 11:07 am

Re: intollerance to throxine

whiteley wrote:how would i know if i am intollerant to tyroxine.i have been on it for 7 years for my hypo never really had any problems till last year became very ill couldent eat not able to get out of bed arms and legs weak tierd felt sick all the time. gp decided i was deppressed even with tsh at 12.80 t4 14.60 .over the year i started to get better but am now left felling unwell everyday feeling sick cold all the time massive hugrey feeling headaches tierd spine and elbow painful and also my knee .have days when iam so tierd dont seem to function have a fulltime job to hold down last blood test was tsh 5.19 t4 16.4 t3 3 .3 meds increased to 150mg taken with125mg alternate days .i stillhave seen no improvement in my health.i am also taking hrt could i be intollerant to the tyroxine.also my thyroid is painfull and i sometimes find it hard to swollow ....i have never ever been this bad.
Based on my wife's experience, you may find things improve if you lower your T4 but include some T3 (either by way of T3 tablets or by way of Erfa which contains T4 and T3 as well as other things present in human thyroid secretions, namely T1, T2 and calcitonin). I say that because my wife had various aches and pains which rapidly and, more significantly, unexpectedly disappeared once she was on T3. It seems unlikely that things are going to improve on your present regime so it would be well worth a trial especially as you seem to have plenty of headroom on T3 (judging from your last blood test). If your GP/Endo won't play ball, you can purchase T3 online without a prescription but, should you decide to go down that route, it would be worth paying a visit to one of the leading thyroid sites where you will get lots of guidance on how to use T3, where to get it from online and much much more. Google thyroid and advocacy. You'll find a lady there who, along with her team, collectively have a great deal of first hand knowledge of suffering with hypothyroidism and who will give you much more than the superficial and over-cautious advice being dispensed here.

On the subject of over-cautious advice, NHS medics trot out the maxim "above all do no harm" (non-maleficence) but lose sight of their obligation to do good (beneficence). Of course, doing no harm is the easy way out if you want to protect your own backside. Many medical procedures in fact involve doing harm, e.g. virtually all drugs have potential side effects, so no doctor can claim that he/she never does anything which could potentially harm the patient. In other words, the "first do harm" maxim is totally misleading and you have to question why any doctor would resort to quoting it as an excuse to avoid doing the patient good.

I would add that many NHS medics have been blinkered by a so-called gold standard test that simply measures TSH, nothing more nothing less. That test does not equate with the signs and symptoms experienced by many people. Doctors need to examine and listen to the patient rather than place reliance on a biochemical assay. Apologies for the rant but I am becoming increasingly appalled by the medical profession's attitude towards people suffering with thyroid-related disorders. Until I encountered the problem through my daughter and wife, I had no idea what a disservice those with thyroid-related disorders are getting within the NHS. To be honest, I never imagined things could be as bad as they are. Things came to a head for me when my daughter was told by an eminent endo that she should cease taking her thyroid medication altogether (which she didn't) and then got referred to a CFS specialist who told her categorically that there was no way she could have CFS when the thyroid medication had so obviously restored her to good health and enabled to get back to leading a normal life doing a job that she had been in danger of losing because of the health problems stemming from her thryoid-related disorder.

ipman

Mireille
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Joined: Thu Jan 26, 2012 4:14 pm
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by Mireille on Sat Jan 28, 2012 11:29 am

Re: intollerance to throxine

I am sorry I don't agree. Her symptoms mimic mine when on T4. I, amongst thousands of others worldwide are INTOLERANT to synthetic T4. This is proven by the amount of forums and thyroid help sites which have been in existence for many, many years, since natural desiccated thyroid became unlicensed and the TSH became the Gold Standard. SYNTHETIC T4 was POISON to me and I would have died on it if I hadn't educated myself to take T3. BUT DOCTORS REFUSE TO LISTEN TO THE PATIENT!.

Mireille

Dr Petros Perros wrote:I am sorry to hear that you are not well. Your symptoms do not suggest that you are suffering from intolerance to thyroxine. Very rarely people can develop reactions to some of the binders that are found in thyroxine tablets, but your symptoms are not suggestive of that. I hope you get better.
Last edited by Mireille on Sat Jan 28, 2012 11:33 am, edited 1 time in total.

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talkhealth
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by talkhealth on Sat Jan 28, 2012 11:32 am

Re: intollerance to throxine

Perhaps Mirelle you'd like to have your say in our new 'talking with doctors' sub-forum.
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Mireille
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Joined: Thu Jan 26, 2012 4:14 pm
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by Mireille on Sat Jan 28, 2012 11:36 am

Re: intollerance to throxine

Thank you very much. I can't seem to find it. Could you post a link please.

Mireille

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talkhealth
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by talkhealth on Sat Jan 28, 2012 11:47 am

Re: intollerance to throxine

It is the first topic now on the list of choices - http://talkhealthpartnership.com/forum/ ... .php?f=194

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