First Blog ever :-)

[Poppy03]

Hello. Firstly I would like to say how grateful I am to find this place, I finally feel understood. Reading how others have expressed how they have felt physically and how they have been treated by the medical profession is a breath of fresh air. Clearly I would prefer that none of us have to go through it but so, so glad to know I am not alone.

Briefly my story. After the birth of my 3rd daughter now nearly 3 (had had 2 previous miscarriages), I went to my GP because my rings no longer fitted my fingers. They had fitted up until I had her but after a couple of weeks I noticed my fingers were different. I had been wearing a different sized wedding ring just in case my fingers swelled up in pregnancy but they didn't. My GP asked a few questions and then ordered some blood tests. I went back for my results and was asked if I had a problem with my thyroid. i said no, he said 'well you do now'. A bit shocked but it fell into place why I struggled so much with breast feeding, so cold, dizzy spells etc etc. He started me straight away on a 25 dose and told me to come back for tests. Straight after taking it I was good for a few weeks and then back to how I was before. Each time I went back he asked me how I was doing I said tired. Each time I asked 'is this the level of tiredness I can expect for the rest of my life'. He gradually increased my dose to 75 but I still felt so awfully tired. Eventually I asked if I wasn't able to use the T4 and he mentioned that it is possible and there is another type but he couldn't prescribe it so sent me off to the endo.

So really I feel, based on a lot of the stories, I was well treated, quickly diagnosed and listened too. I was just unfortunate that the medication didn't work for me. There ends the good part of my story.

My endo has not been so supportive. After weeks of waiting I went in, long story short, he found a lump on my thyroid and wanted to run other tests to exclude any other problems. Ok, I went along to all the appointments, had the tests, a painful biopsy and went back for the results. Biopsy failed, other results nornal, did not see endo so was told nothing could be done and I needed to see him for another biopsy. another appointment, another biopsy and when I tried to talk to him about my results and a way forward I was told it was not the time or place and to make another appointment. Another appointment, changed at the last minute for another week later, and another failure. Asked him about the tiredness and changing medication, he wasn't keen, said we would speak next time. Further appointment 3rd biopsy, asked again and he finally gave in and said he would do it, tried to walk away but I said could he do it now! So he did. He was stern, said it wouldn't work, he will not over treat me etc etc etc. Next appointment my biopsy was clear, finally and within 24 hours of taking the T3 the difference was night and day. I got a lot of heart palpitations and shakes but these eased off and everyone was commenting on how different and alive I was. Unfortunately after a few weeks I started to get aches and pains and some of the tiredness returned. I waited and had my blood tests went back to see him as told only to be seen by a different Dr who said they didn't have my results and he can't do anything anyway without the big bosses say so. He said he would contact me but didn't. After much tooing and froing I had to wait another 7 weeks for an appointment. At this appointment the Dr wasn't interested at all and basically said within 1 min that he was referring me back to my gp as he wasn't messing around with my medication any more and was not going to treat me. Shocked I asked why, he was rude, asked for a second opinion and it really went downhill from there. As I stood up to leave I said how would you feel if you had to live like this, would you just accept it? He looked at me and told me to leave his office immediately. Have put a complaint into the hospital which has just been returned basically calling me a liar. Oh the joys of the NHS.

So that is where I am at. I am not as bad as I used to be but definately not myself. I am getting all the test results from my gp for the last 4 years and I am looking to go privately. My last results were TSH 0.15 FT4 10.5 FT3 4.6. These are the ones sent on email so not read from a lab report or any ranges given. If anyone has any thoughts on this I would appreciate another set of eyes or two. Thank you for reading.

[Chippysue]

What a story! how disgraceful for this Endo to treat you like this! Why don't they (many of them) want us to feel well? Why don't they believe us?

You could always write a letter of complaint to the Endo him/herself!?!

Your Free T4 is low, even without knowing the lab range. This is understandable if you are taking T3 only. You could possibly benefit from taking Armour or other natural desiccated pig's thyroid. This has T4 and a little T3 in it. I don't know how much you know about other treatments.

I am assuming that your GP will continue to prescribe T3?

I really sympathise, it certainly sounds as though you were hypothyroid for a while before you were diagnosed too.

[Muffy]

There is alwayst the General Medical Council if you wish to make a complaint!

[Poppy03]

Thank you for your reply.

Yes I think I had symptoms before but mildly but I think the second miscarriage kicked it all off and now feel blessed I was able to carry my little one to term.

The hospital has made it clear in its letter that there will be no further communication on the subject! I will have to go to the next level but I need to gather my energy for finding a solution to my health issues and christmas first.

I went back to my gp but 1. couldn't refer me for a second opinion as he didn't have a letter from endo so was clueless and 2. decided to elimate other things first (again). Can't see my original gp because he works under the endo at the clinic which I didn't know until I saw him up there. So far my GP has prescribed the T3 and I am about to order another batch so will see. My original gp was the one that said about the natural stuff but endo never offered.

All I know on the test results are - normal! Is that not the most frustrating word!! When you ask you just get a huff followed by a quick reel off of the numbers. I know my T3 was apparently 4.2 before taking the T3 and 4.6 now. I asked him if that was the sort of increase you would expect after taking T3 and he just shut his screen off and told me he wasn't having this conversation.

I was very low after all this happened but finding this site has given me a renewed feeling of hope and I am just so thankful.

[Poppy03]

Muffy, I think the next step is the Parlimentary Health something or other and I have found an independent organisation who will help with complaints although haven't contacted them yet. The letter was astonishing. Not written 3rd party, accusing, used words like 'that was untrue' and 'Dr xxx does not say those things' and 'you continued to be unpleasant'. Really shocking.

[jugemvicsar]

Oh my dear Poppy03

I congratulate you for your courage to keep keeping on. For it is that courage that will help us finally in the end. Thank you for sharing your story with us all.

Whenever I encounter someone, especially an 'expert' who goes on the defensive, I find it is because they are floundering in their field and feel threatened by those who ask the questions. I think it is sad that they can't admit that they don't 'know it all' none of us do. We are learning all the time, so we need to keep an open mind. I am glad that you have taken heart by finding this site, again I say 'thank the powers that be for Lyn Mynot, for initiating Thyroid UK which in turn initiated this site. For her courage to speak out for all Thyroid sufferers.'

You need to gain your strength and energy before you decide what you want to do about your appalling treatment.

I wish my Mother had had the courage and committment to keep on, for if she had, she would not have suffered over 40 years of living in a body that does not function properly.

We spoke on this site recently about sweats and breathing difficulties and I had not found anything, conventional or otherwise that dealt with it over the last ten and more years. I am at present trying something that helps to support the pituitary gland, the most important gland of all. I am hopeful the reports will be good for the future.

Stay strong and forever hopeful.

Much love

Wellwisher

[Poppy03]

jugemvicsar. I think you are right, he was floundering. I have been reasonably lucky with my gp's as they have always been willing to listen and not afraid to learn (the good ones anyway - refuse to see the others). One gp asked me for further information regarding some surgery that my husband had to have for our infertility and the name of the private consultant as he wanted to pass on some information to another patient who was having similar problems. He has since retired Perhaps they lead me into a false sense of security!!! I just cannot understand how you wouldn't want to learn more about your speciality. I am an avid gardener and I love to hear what people do regardless of if they have just started out or have been doing it for 80 years, you can always learn something.

I have just printed off the forms to join the Thyroid UK site and will be promoting it to others too that I know have thyroid issues (surprising how many you come across). One friend is totally fine just on the T4 and has been for years, which is great but more needs to be done for those that are not.

I appreciate your kinds words, they will keep my determination going, thank you.

[Muffy]

Good for you for keeping going. The GMC have taken quite a few good doctors to IOPs or FTPs because those doctors have treated the patients with so called 'normal' blood test results and the patients have been returned to good health by those very doctors.

The GMC also have a responsibility to also look into doctors who perhaps are not giving such a good service, but I wish you luck with your complaints in whichever course you take.

Let us know how you are getting on.

[Poppy03]

Well I have contacted the independent advocacy service and they sound really nice and supportive. Hopefully by the end of next week we will be able to get the ball rolling with the hospital complaint as I am not going to let them bully me. Unfortunately it is not just the lack of treatment but the inappropriateness of the Dr involved too.

On a slightly better note, I called Colchester Hospital, endocrine department and spoke to the secretary. Because I want a second opinion this is the nearest hospital to me and I wanted to find out if they were at least openminded. I explained to the lady that I was unhappy with my other Dr that he dismissed even the thought that T4 alone doesn't work and wanted to know if this was the opinion of the Drs there. She asked for a name of an alternate medication and I said Armour (or something like that) and she tells me that she sees it in letters that she knows there have been problems getting hold of it, something to do with USA but that they certainly don't dismiss it. They also do private work too. So once I get my records and go through them, get my test results to keep my gp happy I am going to ask to be privately referred to one of these Drs. Onwards and upwards.

[Muffy]

Hi again,

There was a problem getting hold of Armour, but no longer, also there are alternatives of natural desiccated thyroid, including Erfa from Canada.

I know Dr. David Cunnah (Chelmsford) has said he's heard good results with Armour, but I don't actually think he prescribes it. My daughter never looked back once on Armour, but that was prescribed privately by Dr. Skinner in Birmingham and the prescribing taken over by our local GP.

[Poppy03]

I would just be happy to have a Dr listen and look at my test results and look at how I am and make an informed decision. The Dr I saw, according to the letter received back from the complaints department, does not believe there is any evidence to support a combination treatment and only did it because of pressure from myself. Strange that it was himself that brought it up as I only knew about a natural form of T4 that my Gp had told me about!

[Muffy]

Armour, Erfa or other natural dessicated thyroid meds contain T4, T3, T2 and T1.