My Journey - Part 1 *Warning long post*

Hello to you all.

This is my first post on the forum (apologies thats it is so long) but I just wanted to share my journey with you all in the hope that someone somewhere will find some comfort or inspiration to keep battling on, it really is worth it.

I found Thyroid UK and this wonderful community of knowledgeable people in 2011/12 and thank the Lord I did, or I’m not sure I would be around today, which to some may seem like an exaggeration, but I can assure you is true.

Early in 2011 I quit smoking. I had tried a number of times over the years but had always succumbed back into the old habits and every time I relapsed, my nicotine intake increased, so by 2011, I was smoking 30-40 cigarettes a day.

The time had come to quit for good. I prepared for my quit day several months ahead, ensuring that my diet continued to be healthy, and that I wouldn’t succumb to unhealthy snacking to compensate for the lost habit. I gradually built up an exercise regime at the gym with the help of a personal trainer and prior to quitting, I was probably the healthiest and fittest I had felt for years.

Then, I quit smoking and my hypothyroid journey started, although I didn’t know thats what it was at the time, or that cigarettes had somehow been propping up my thyroid and masking its poor function.

Within 6 weeks I started to become ill. I had no energy, my skin and nails were dry and brittle, my hair had changed textured becoming fine and coarse. Within a few months, my lack of energy and fatigue were beginning to have a dramatic impact on my quality of life. I was struggling to keep up with the demands of work, and each day it was becoming harder to focus. I used to get home in the evening and go straight to bed to try to get some respite from the chronic fatigue. I was constantly bloated and retaining water in my legs, ankles and face. My body ached all over, especially my legs, and these bodily aches and pains were waking me up at night so that, the quality sleep needed for recuperation was not forthcoming.

The exercise regime that I had become part of my daily routine was becoming impossible to continue with. Indeed, during and after exercising, I would become so fatigued I would need to sleep immediately afterwards, even in the car! It was time to visit my GP, who ordered some blood tests and on receiving the results, declared me “fighting fit” and stated that it was “just my age”. (45)

Over the next few months, my health continued to decline. My mobility was now becoming seriously impaired. I had to roll out of bed in the mornings, as I had no strength to lift my head off the pillow. The stiffness in my limbs made walking up or down the stairs an imposing task and a short walk to the shops too painful to contemplate. I had gained 4 stone in weight in as many months, (and I had been the same weight of 8.5 stone, give or take a couple of pounds, all of my adult life) without explanation.

I returned to the GP several times asking him to further investigate the cause(s) for my ill health and unexplained weight gain and even suggested testing for thyroid function (as a nurse friend of mine had suggested this should be investigated).

He insisted that he had tested me for everything including thyroid function and everything was normal. I asked him to explain how I could have all this weight gain in such a short space of time when I had been more or less the same weight all my life and he stated that it was simple, I was eating too much and I was in denial (OMG a secret eater…. its laughable really) The bloating was because I was overweight (he actually said FAT) and call me stupid, but, I could sense that he now considered me a “nuisance patient”.

I think he actually did me a favor by saying all these nasty things, as his attitude is what galvanized me into action researching everything thyroid and endocrine system, and as a result, I found Thyroid UK.

With the help of their (and others) excellent resources and the considerable knowledge of the forum members, I began to educate myself, and started to gain an understanding of what might be happening with my hormone system to create such ill health. . I paid for a barrage of private tests including adrenal saliva testing and full thyroid profile tests and Reverse T3. When the tests came back, along with vitamin and mineral deficiencies, they showed TSH in range (1.5, still much higher than when I was well) Low FT4, (not optimal but in range) and Low FT3 (again not optimal but just in range) and high reverse T3 and along with very high and very low Cortisol levels.

Armed with my knowledge, research and test results, I went to see my GP, (October 2011) to present the evidence I had collated and the new test results and lab report (convinced that he could not ignore all this and clinical symptoms), with a view getting an acknowledgement form him of a potential thyroid issue and requesting a referral to an endocrine specialist. As well as feeling very unwell, I was also very nervous, as my previous consultation (secret eater gate) had not gone well. Doctors seem to have this innate ability to make you feel like a irksome child and turn you into a stammering wreck (despite your ability elucidate succinctly on a daily basis in the normal world), however, I did my best to explain the tests and the medical papers, by mumbling my way through incoherently.

He refused to acknowledge the significance of the new tests (had never heard of Reverse T3) or any of the medical papers, and insisted that a referral would be a waste of time. When I very quietly suggested to him that he had a duty of care to me (as his patient) to undertake all reasonable investigations as to the cause of my ill health, and that my request to be referred to an endocrinologist was reasonable given the test results and my clinical symptoms. Well, that seemed to light a fire under him and he erupted! He rose out of his chair and shouted at me (and when I say shouted, I really mean shouted, he was so loud, someone came in from the room next door to check all was okay) not to tell him about duty of care, he knew what this was and had gone above and beyond his duty. Although he thought it was a waste of time, he would refer me to an endocrinologist but because I had become so difficult, and that our doctor patient relationship had broken down, and he would be asking for me to be removed from his list. He stormed out of the office took a copy of the results then asked me to leave. Needless to say, I was stunned, absolutely speechless. I received a letter from the shared business services 2 days later stating that I had been removed from his list and needed to register with another practice I sat down and just sobbed, what do I do now.

To be continued...........

16 Replies

  • Welcome to the forum, Kathymm. What took you so long to post? :-D

    I look forward to part 2.

  • Thank you Clutter.

    I'm not sure why I waited so long to post, maybe I wanted to wait for my journey end to be able to post a good news story....part 2 will be on its way soon :-)

  • I'd say that being removed from this arrogant, sadistic bully's list was the best possible outcome for you.

    Welcome to the forum!

  • Thank you Humanbean, you're absolutely right. It meant that I had to take responsibility for my own health, and I'm glad to say, Idid and I have never regretted it.

  • Crikey..looking forward to part 2 :)

  • Hi Kathy, I have to say I started reading, thinking I would never get to the end but found it so entertaining that I cannot wait for more. Of course the whole horrible situation should not be amusing but if we don't laugh, we cry. I think I must know your GP in his other life as a bullying endo who reduced me to tears (and that was even with my husband sitting next to me for support). Keep smiling. This forum is brilliant and things will get better.

  • Thanks Hennerton, I think the unfeeling, uncaring, downright idiotic responses of some GPS is so familiar to people that it must be something they teach in medical school " Bedside manner- how to display condescension- all the tools you'll ever need". Its only now as I write that I can see the funny side, at the time, I was distraught.

  • I do hope that you made a formal complaint to the Practice Manager about that stupid man's poor attitude, rudeness and unhelpfulness. How they hate informed patients rattling their fragile ego's. Welcome to the 21st century and its apology for GPs.

    Well done for educating yourself and getting tested, take complete control of your health and don't rely on the NHS.

    Looking forward to part 2.

  • Thanks cinnamon girl. De- listing a patient is supposed to be a last resort for a GP (mostly used for abusive patients) and they are supposed to follow specific guidelines, issuing warnings to patients about their conduct. He didn't bother with any of that, just had me struck off his list on a whim. At the time, everyone said I should make a complaint, but I felt so ill at the time, I just wanted to get well and going through the NHS complaints process filled me with dread. Also, I live in a village and getting another GP would be been difficult, so I decided to concentrate on getting well rather than use what little energy I had left to fight the GP.

  • Yes, there would be guidelines and I completely understand how making a complaint was the last thing you felt like doing. It is however never too late!

    Am currently going through the formal complaints process with the Health Ombudsman, I understand from others here that it's a waste of time so not holding my breath. To think that our taxes pay these GPs salaries, it beggars belief.

    It may be worthwhile talking to the CCG or PALS to find out what you should do next due to your lack of choice of surgeries.

  • Sharing the T shirt and looking forward to your next instalment.

  • What a cliffhanger - can't wait to read the rest!

  • I hope you reported the nasty bully

  • Wonderful raconteur cannot wait for episode II

  • He sounds a right tit and should have been reported for that outrageous behaviour. Perhaps being removed from his list was a blessing in disguise. I would let your next GP know of this outburst - in a calm and factual manner. I dislike bullies!! and that is what he is. Good riddance!

  • Thank you everyone for all the wonderfully supportive comments, Its good to know that it wasn't just me being a sensitive soul! Next instalment coning soon. :-)

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