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Comment by Diane Franks on July 11, 2012 at 6:40

Frances, if your friend would like to chat to me, I am more than willing to help anyone who has under active thyroid and feels they are not getting fully better.

Comment by Diane Franks on July 11, 2012 at 6:39

Frances, thank you. the more people that understand what their options are the better. As an update to this story, I started seeing a private doctor 18 mnths ago. Within 10 minutes with very simple manual tests he discovered my adrenal had plummeted. If the adrenal is not working there is no way any thyroid medication will work and because of that one can become thyroid toxic, which I then was. Having very simply got the adrenal working again then reintroduced T4 with a multitude of vitamins/minerals etc all required for the hormones to function properly. I certainly after a while started to feel better than before. We [docand me] both decided a year down the line that I was not going to get any better than I now was so I was asked to get a T3/T4 blood test (my NHS doc would only do a T4 one) which showed I was deficient i T3. This can be for two reasons, either the T4 is not converting to T3 (as in my case) or the cell receptors (every single cell in your body has a T4 receptor which is why when it doesnt work one is so ill) are not taking in the converted hormone.  I then stopped the conventional medication T4 (levothyroxine) and gradually went over to T3. Within 2 weeks I felt I had been reborn. The beauty about T3 is that it works within a couple of hours so you can self regulate how much you take and when you take it.  This is the best I have felt in 12 years and am more than happy with how I feel now. I have to import the T3 (cynomel) from mexico (half the price as USA) and the supplements (selenium etc) also add up, which is hard when unemployed so family step in to help pay.  I saw my NHS doctor last week actually and took along the T3/T4 test results. There was no way they could argue with those.  Now ... my doctor is saying she will look into prescribing me on the NHS T3!!! Wow!! It has taken 12 years but we have finally got there. I still await hearing back from her, so am holding my breath.  It saddens me so much that doctors are not prepared to go that one step further to help their patients. I believe it is down to ignorance, ignorance on thyroid illness. I find I am teaching my doctors about the illness and often hear "I never knew that!". What shocks me though is when being sent by NHS doctor to an endo even the endo will not acknowledge that there is still something wrong.

I urge anyone suffering from under active thyroid who still feels ill to go to  http://www.tpa-uk.org.uk/ where they will get all the information I did which then led me to Dr. peatfield (who himself has under active thyroid) and so finally get better. He is not out to make money, my appointment with him cost £175 but that was all. Since then all communication is either by letter or phone and he doesnt charge. He travels the country holding clinics but is based in Surrey.  Dr. Skinner is another doctor based in Birmingham.  I finally feel that life is actually worth living. Through my thyroid illness my marriage broke down, I lost my job and I became a recluse. I thank God every day for leading me to Dr. Peatfield who was the only one who believed me when I said I was still very ill.

Comment by Frances Andrews-Speed on July 11, 2012 at 3:44

I have pasted this onto facebook, I have a friend who has suffered like you think she will find it an interesting article and of course it means others will read it too.

Comment by Diane Franks on December 5, 2011 at 15:48

Interesting Link. Will read rest of pages later. Looks like they could be able to help should my doctor plead ignorance, lol.

Thanks for giving that.

Di

 

Comment by Kevin on December 5, 2011 at 15:38

You may wish to try http://www.mastersglobal.com/patients.php , as things might have changed.

Comment by Diane Franks on December 5, 2011 at 15:31

Hi Kevin,

If only! Try getting most doctors to prescribe an unlicensed drug when they refuse to believe you are still ill. Dr. Skinner was stopped by the GMC for prescribing Armour to his patients who did not respond to T4 alone. Only now, couple weeks ago did he get his license back after about 7 years of campaining. The specialist I see, Dr. Peatfield, is no longer a registered doctor, he decided to resign rather than face a similar hearing in which he would get banned from practising.  The problem is in getting your doctor to understand they can do this and then have the courage to do it.   Even if you can get a doctor to do a T3 blood test, often the laboratory will refuse as it is not on the NHS list of acceptable tests or whatever list they go by.  T4 test alone shows I am as fit as a fiddle - no matter I don't look or act it. As far as all three doctors at my practice are concerned there is nothing wrong with me, to the extend one doctor actualy told me off for wasting his time!  Apart from that when you are still suffering like I am, the moment you open your mouth to defend yourself or try to fight a battle you just burst into floods of tears and then get accused of being menopausal!! lol .... But now I have some ammunition. I paid (over £100) to get a T4/T3 lab test done privately. It showed my T4 within acceptable range, though their opinion, is still a bit low. But it clearly shows my T3 as being well below the minimum range. i.e. I am still ill!  So, hopefully my doctor will now sit up and listen and when I present the documents of Dr. Skinner's reinstatement by the GMC in which they say unlicensed drugs can be used and I present them with my test results, they will decide to listen to me and prescribe the drug I need. Cytomel (liothyronine). Problem could be though, they haven't a clue how to instruct me how to take it, but then I can tell them how to do that!!

I have been to that website many times you give a link to, it was through that site I found out about Dr. Barry Durrant-Peatfield and it is he that I see/correspond with  and am a member of Thyroid Patient Advocacy website who have been great in advising me how I should take T3 etc.   I need to ask them to help me compose a letter to my Doctor to present outlining why they should now view me as being ill and why they are now safe to treat me with T3 only and not be scared they may also get hauled up before the GMC. I have sympathy with them, noone wants to lose their job through doing something wrong, but they don't know the rules or won' believe them or want to take the risk. .... Hey ho.....

Thanks for your comments and links, some good info .....

I will post back when I have spoken to my GP, sometime next week now probably. I am one of the lucky ones though, as have only been suffering with this illness for around 10 years. Many I speak to have been ill for 15/20 years or more. I am sure it all boils down to the cost of the medication. Hopefully though once word spreads about Dr. Skinner's exoneration, GP's will sit up and start listening and responding to their patients.

 

Di 

Comment by Kevin on December 5, 2011 at 12:59

Diane hi,

Having worked in the Pharmacetical Industry, I am aware that within the UK doctors can preseribe on a named patent basis, I found http://www.thyroiduk.org.uk/tuk/pages/treatment/named_patient.html and http://www.thyroiduk.org.uk/tuk/pages/treatment/hormone.html , hope will be of use, if not already known.

Comment by Diane Franks on December 5, 2011 at 10:55

Well paying for my own T3 is now too expensive. So instead of using a Canadian pharmacy, I am reduced to using MyMexicanDrugStore.com ..... where the drug is a fraction of the cost from the other company. They come recomended to me but have to say, the name puts me off and would have been at the bottom of my list. But when unemployed and NHS don't give a hoot whether I am ill or not, we sometimes have to make choices we would rather not.

 

Had a letter from doctor other day saying my annual thyroid blood test is due. I am going to present them with the test results of the test they won't do, just to show I am still ill and ask them what they will do about it. Fingers crossed they will be brave and let me have the medication I need so I don't have to resort to mexican drug companies to buy it on the cheap.

Comment by Diane Franks on December 1, 2011 at 17:50

Hi Anna,

Do you mean how was I still feeling ill or?

 

Di