Aa
so frustrated....
Been to my G.P today, still not convinced her that my thyroid is not normal for me....when will she listen....I have all of the symptoms and was diagnosed with hypothyroidism in '04...and take Thyroxin 50mcg....she keeps saying my bloods are within normal range......so why do I still feel unwell with all of the classic symptoms?? - I have asked her to write a referral letter for me to see Dr Skinner (endocrinologist) but she keeps saying...."I don't want you to become hyperthyroid" - soooo frustrating!! Help!!!
I want to be sure and give you some ammunition you need for your appointment with the Endo. First, you should understand that just being an Endo does not guarantee a good thyroid doctor. Many of them specialize in diabetes, not thyroid. In the UK, they all seem to be heavily influenced by the NHS and the BTA. Accordingly, they have the "Immaculate TSH Belief" by which they want to use TSH as the sole diagnostic for thyroid issues. If your TSH is less than about 7, it seems that many don't think you need medication, that your symptoms are really somatoform disorders.
There are some doctors in the UK who totally disagree and have been fighting the system for years. The following info is about Dr. Gordon Skinner, who was treating hypo patients clinically, based on Free T3, free T4 and symptoms. The medical establishment tried to shut him down. You can read the result below. You might find this info useful in your discussions with the doctor.
"IMPRESSIVE GOOD THYROID NEWS!
After a grueling week by the United Kingdom’s General Medical Council (GMC) , it was decided that the UK’s most renowned thyroid practitioner, Dr. Gordon P. Skinner, should have all his restrictions lifted and his Fitness to Practice restored!
On November 11th, 2007, the GMC had decided that the beloved Dr Gordon Skinner was not fit to practice, simply because in 2005, he dared to listen to and dose by a patient’s clinically-presented thyroid symptoms rather than her TSH labwork–the latter which fell in the erroneous normal range. Even more dastardly, felt the GMC, Skinner was going to treat the patient without a referral letter from her GP, and may have failed to contact the GP. Heaven Forbid!!
Says a recent statement from TPA-UK:
The GMC have agreed that Dr Skinner was not acting dangerously in initiating treatment with thyroid hormone replacement for those patients who had normal thyroid function tests but who suffered several symptoms and signs of hypothyroidism. They also agreed that for those patients who did not do well on levothyroxine-only therapy, the use of natural desiccated thyroid extract (i.e. Armour Thyroid) was a safe and effective thyroid hormone replacement that doctors could prescribe, even though it remains unlicensed. This is a precedent - and one that the British Thyroid Association are most definitely very unlikely to be happy with."
If interested in more detail, you can find it here.
http://www.tpa-uk.org.uk/GMC_skinnerhearingnotes_Nov07.php
There was similar action taken against Dr. Barry Durant-Peatfield, with similar results.
If you run into the expected resistance from the Endo, you might tell him that although TSH is reported to be the most sensitive test for thyroid status, it cannot be shown by scientific data to correlate well with either of the biologically active thyroid hormones, free T3 or Free T4, much less correlate with symptoms, which are the most important. You can also tell him there are studies that have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all. This is a link to one such study.
http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002
Then if he does agree to continue you on T4 med only, you can also tell him there are studies showing that when a hypo patient is not adequately converting T4 meds to T3, the addition of T3 to is beneficial in raising the Free T3 level and helping relieve symptoms. Keep in mind this suggestion from a fellow UK member. After much difficulty she was finally able to get the testing and treatment she needed. This is how she described what it took to get there.
"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge. You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid. If you fight for what you want, you will eventually find someone that is happy to go along with your wishes. But we all have to take charge of our own health, right?"
If you run into a total roadblock with the Endo, I happened to run across this alternative the other day. It is a doctor in Wales, that is willing to take your test results and prescribe the meds you need (T4 and T3 if needed), as long as you can get your doctor to cooperate. This is a link to the info. Note the multiple areas listed on the left hand side of the page. You can get info on the doctor's background and lots of other info.
http://www.drmyhill.co.uk/wiki/Thyroid_profile:_free_T3,_free_T4_and_TSH
Best of luck to you. Please let us know how the appointment goes with the Endo.
There are some doctors in the UK who totally disagree and have been fighting the system for years. The following info is about Dr. Gordon Skinner, who was treating hypo patients clinically, based on Free T3, free T4 and symptoms. The medical establishment tried to shut him down. You can read the result below. You might find this info useful in your discussions with the doctor.
"IMPRESSIVE GOOD THYROID NEWS!
After a grueling week by the United Kingdom’s General Medical Council (GMC) , it was decided that the UK’s most renowned thyroid practitioner, Dr. Gordon P. Skinner, should have all his restrictions lifted and his Fitness to Practice restored!
On November 11th, 2007, the GMC had decided that the beloved Dr Gordon Skinner was not fit to practice, simply because in 2005, he dared to listen to and dose by a patient’s clinically-presented thyroid symptoms rather than her TSH labwork–the latter which fell in the erroneous normal range. Even more dastardly, felt the GMC, Skinner was going to treat the patient without a referral letter from her GP, and may have failed to contact the GP. Heaven Forbid!!
Says a recent statement from TPA-UK:
The GMC have agreed that Dr Skinner was not acting dangerously in initiating treatment with thyroid hormone replacement for those patients who had normal thyroid function tests but who suffered several symptoms and signs of hypothyroidism. They also agreed that for those patients who did not do well on levothyroxine-only therapy, the use of natural desiccated thyroid extract (i.e. Armour Thyroid) was a safe and effective thyroid hormone replacement that doctors could prescribe, even though it remains unlicensed. This is a precedent - and one that the British Thyroid Association are most definitely very unlikely to be happy with."
If interested in more detail, you can find it here.
http://www.tpa-uk.org.uk/GMC_skinnerhearingnotes_Nov07.php
There was similar action taken against Dr. Barry Durant-Peatfield, with similar results.
If you run into the expected resistance from the Endo, you might tell him that although TSH is reported to be the most sensitive test for thyroid status, it cannot be shown by scientific data to correlate well with either of the biologically active thyroid hormones, free T3 or Free T4, much less correlate with symptoms, which are the most important. You can also tell him there are studies that have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all. This is a link to one such study.
http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002
Then if he does agree to continue you on T4 med only, you can also tell him there are studies showing that when a hypo patient is not adequately converting T4 meds to T3, the addition of T3 to is beneficial in raising the Free T3 level and helping relieve symptoms. Keep in mind this suggestion from a fellow UK member. After much difficulty she was finally able to get the testing and treatment she needed. This is how she described what it took to get there.
"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge. You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid. If you fight for what you want, you will eventually find someone that is happy to go along with your wishes. But we all have to take charge of our own health, right?"
If you run into a total roadblock with the Endo, I happened to run across this alternative the other day. It is a doctor in Wales, that is willing to take your test results and prescribe the meds you need (T4 and T3 if needed), as long as you can get your doctor to cooperate. This is a link to the info. Note the multiple areas listed on the left hand side of the page. You can get info on the doctor's background and lots of other info.
http://www.drmyhill.co.uk/wiki/Thyroid_profile:_free_T3,_free_T4_and_TSH
Best of luck to you. Please let us know how the appointment goes with the Endo.
I am finally going to see my endocrinologist on Thursday, as silly as it may sound....I am so happy!! Hopefully, I will be able to get through to him.....it's been a long eight year battle. The last endrocrinologist who saw me prescribed me with 50mcg Thyroxine......but this didn't help at all and my doctor refused to take my symptoms seriously....fingers crossed!! :-)
Sorry! I appeared to have sent a message back to you which was meant to be sent to flyingfool.....this site is all new to me....!
Thank-you for your reply, I agree with you, my doctor must want me to remain unwell.....I have dealt with these symptoms for 8 long years and I am so tired of trying to get my points/views across to my G.P - he will not listen!! Instead I am taking 50mcg of Thyroxine which at first lifted some of the symptoms....but it wasn't for long.....the symptoms appeared to re-surface and have been present since!! I have even been to the chemist to ask for some iodine or kelp suppliments as I have read these suppliments can help to alleviate symptoms......fingers crossed.....I may some day get some further treatment. I have asked my doctor to write a referral letter to an endocrinologist....I will pay privately for this but shouldn't have to really as I should be entitled to be seen on the NHS - I pay my National Insurance for this every month!! The UK ***** when it comes to such problems!!
Thank-you for your reply, I agree with you, my doctor must want me to remain unwell.....I have dealt with these symptoms for 8 long years and I am so tired of trying to get my points/views across to my G.P - he will not listen!! Instead I am taking 50mcg of Thyroxine which at first lifted some of the symptoms....but it wasn't for long.....the symptoms appeared to re-surface and have been present since!! I have even been to the chemist to ask for some iodine or kelp suppliments as I have read these suppliments can help to alleviate symptoms......fingers crossed.....I may some day get some further treatment. I have asked my doctor to write a referral letter to an endocrinologist....I will pay privately for this but shouldn't have to really as I should be entitled to be seen on the NHS - I pay my National Insurance for this every month!! The UK ***** when it comes to such problems!!
Thank-you so much for your reply. I am sorry to hear that your wife has been going through a similar thing as I am. This has been going on for almost eight years and I have struggled to get 50mcg Thyroxine from him. I will read the letter you are both writing as I know it will give me some more answers to my questions!! I have been a member on Medhelp for a matter of days and already feel more understood and supported than ever before.....so thanks again for taking the trouble to reply!
.
Thank-you so much for your reply. I am sorry to hear that your wife has been going through a similar thing as I am. This has been going on for almost eight years and I have struggled to get 50mcg Thyroxine from him. I will read the letter you are both writing as I know it will give me some more answers to my questions!! I have been a member on Medhelp for a matter of days and already feel more understood and supported than ever before.....so thanks again for taking the trouble to reply!
About the single best article with AMAZING documented & footnoted with medical journals and research on this issue can be found here:
http://nahypothyroidism.org/thyroid-hormone-transport/
The site as a whole is amazing. My wife is going through similar thing as you. We are writing a letter and I'm attaching the article above with a 4 page letter with several direct quotes from the article supporting our view of why we think an increase in medicine or the addition of T3 is in order rather than a decrease which is what the endo is leaning towards!
We are at war with established medical industry. So be prepared with ammunition and armor when going into the Dr. office battle zone.
http://nahypothyroidism.org/thyroid-hormone-transport/
The site as a whole is amazing. My wife is going through similar thing as you. We are writing a letter and I'm attaching the article above with a 4 page letter with several direct quotes from the article supporting our view of why we think an increase in medicine or the addition of T3 is in order rather than a decrease which is what the endo is leaning towards!
We are at war with established medical industry. So be prepared with ammunition and armor when going into the Dr. office battle zone.
your dr. dosen't want you to be hyper? i dont think is that good to hear, important is the symptoms.
yes my regular dose 150mcg is good to my body/metabolism even sometimes my FT4 is high but i continue taking my dose never decreased it since 2009, it because if i go down to 125mcg symptoms of hypo are attacking im always weak.
to be honest sometimes i am hyper but not at all & i can manage that unlike being hypothroid thats one thing i dont want to feel again. a lot of strange hypo symptoms.
i suggest you can ask your endoc, about your symptoms so that your dose will get normal/fit for your daily maintenance medication.
Pau
yes my regular dose 150mcg is good to my body/metabolism even sometimes my FT4 is high but i continue taking my dose never decreased it since 2009, it because if i go down to 125mcg symptoms of hypo are attacking im always weak.
to be honest sometimes i am hyper but not at all & i can manage that unlike being hypothroid thats one thing i dont want to feel again. a lot of strange hypo symptoms.
i suggest you can ask your endoc, about your symptoms so that your dose will get normal/fit for your daily maintenance medication.
Pau
I know, half of the time, my G.P doesn't even tell me my results! He just says....everyting is within normal range.....normal for who?? I agree I need to be seen by a new doctor!! Thanks for your reply!
COMMUNITY LEADER
Many doctors are not knowledgeable about hypothyroidism and thyroid medication; they would rather keep a patient hypo than prescribe adequate medication to alleviate symptoms, because they think the patient will automatically go hyper.
What blood tests is she doing on you? You should be getting Free T3, Free T4 and TSH, every time you have blood work.
Do you know if you have Hashimoto's Thyroiditis?
I think you need to find a different doctor; this one will keep you ill.
What blood tests is she doing on you? You should be getting Free T3, Free T4 and TSH, every time you have blood work.
Do you know if you have Hashimoto's Thyroiditis?
I think you need to find a different doctor; this one will keep you ill.
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