Half my thyroid was removed 20 years ago.

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Half thyroid removed

Lab numbers normal

Trouble sleeping some nights


If half the thyroid is gone do normal numbers really reflect how the thyroid is performing

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  • Posted

    Hi dor95888, I also had half my thyroid gland removed 28 years ago and I was put on 100mcg Oroxine daily and I was fine.  Are you taking thyroid replacement medication?  I certainly hope so .. I have found that some people have had half of their thyroid removed and not been given any replacement hormone - I find this most alarming.  I am not an expert on any of this but found that I had to take the management of my thyroid condition into my own hands last year after a doctor insisted on lowering my Oroxine to 75mcg daily and I became hypothyroid and very ill.  The doctor changed the dose because the lab numbers did not fit within "the range" - they changed after I had a section of bowel removed.   I no longer take any notice of the lab results - I am back on my normal dose and feeling fine.  When my lab numbers appear 'excellent' to the doctors I am very, very ill.  So lab numbers are irrevelant in my case.  I think we need to research as much as we can so that we can manage our own health.  This is just my experience - I have found reading others experiences helpful so I hope this may be helpful to you.  Others may be able to offer more advice. smile
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    • Posted

      Dear Sketchy,

      You are saying that not putting people with lobectomy on hormonal replacement/supplement therapy is alarming. I totally agree with you! But what can we do to convince doctors who have that ultimate power to issue a prescription?

      Half of my thyroid was removed nearly two years ago and my life has not been the same since then. I have seen 3 different GPs and they all say that that my blood tests are within the normal range.

      My personal experience with NHS (I am overseas originally) is that the system's motto (at least at GP's level) is to fobb the patients off if they present their health problems the treatments of which would cost any money. Something which is totally imcompatible with the mission of this profession: to treat and cure. So I am trying to preserve the leftovers of my energy and concentrate on roundabout ways to get my life back. I am saying "roundabout" because the only sustainable way to get replacement hormone therapy is via doctor's prescription. At the moment I am looking into alternative route: buying ThyroGold supplement from the USA. There is a lot of positive feedback from people with similar conditions and it is my main hope at the moment.

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    • Posted

      Hi Jen00,  People with thyroid problems are suffering needlessly throughout the world because doctors find the thyroid too tricky to deal with.  Only the most dedicated of doctors will try to help thyroid patients to reach the correct dose in order to lead a reasonable life.  Doctors seem to be terrified that people are going to take 'too much' thyroid medication and therefore damage their hearts and cause osteoporosis etc.  In my opinion no thyroid patient wants to take 'more' medication than what is needed as the effect of being hyperthyroid is just as bad as being hypothyroid.  Each condition is miserable!  But doctors seem to think that we want to go on a joyride and get some kind of high by increasing our medication .. when all we want is to experiment under their guidance with a slight increase over a period of time to see if it brings improvement or not.  Instead they will throw blood pressure medication, cholesterol lowering drugs, diabetes meds and anti-depressants at us happily.  Ugh!  

      You are in the United Kingdom I asume!  I am in Australia.  I had my thyroid lobectomy 28 years ago .. I weighed about 60kg at the time and was put on 100mcg of Oroxine when I left the hospital.  I was told that on that dose my thyroid would get the message to 'go to sleep'  it did not have to work any more as the tablet would do all the work for the rest of my life.  I took it dutifully for 27 years and did not have a problem .. I felt ok.  I was tested yearly and told I was within the range and all was well.  I did not even know what a tsh reading was as I had not looked into anything thyroid as I felt well.  I think body weight has something to do with the thyroid dosage eg. 100mcg Oroxine for a 60kg person but some doctors have disputed this.  You could perhaps look this up.  I only started learning about thyroid problems a year ago when a doctor lowered my dosage and I became very ill.  So although I have been on thyroid meds for 28 years I feel like a newbie at this as I have learned so much over the past year while trying to get back to normal myself.

      I don't know how the NHS works but if you spoke to your doctor and

      offered to pay for the medication yourself would they then write you a script?  I don't know how much it would cost in that case but I think it would be safer than having to buy medication over the internet especially if you asked the doctor to help you with advice on dosage and monitoring.


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