My story - Part 2 - Who can help me?

So, as soon as I took 50mcg levothyroxine I felt so much worse. On one occasion that I tried to persevere with it I just couldn't get out of bed. The only way that I can describe how I felt was like a block of wood, my body seized up.

As doctors could not help me I asked for a second opinion. I was referred to a Professor of Endocrinology at a different hospital. I felt hopeful as surely this expert could tell me why I couldn't tolerate thyroid medication.

How wrong I was, this "expert" told me that I was only mildly hypothyroid and that she would just recommend 50mcg levothyroxine, H E L L O I said I feel worse when I take it. This "expert" told me that there was no alternative type of thyroid medication available. I asked about T3 and was told that even if I was her sister, she would not recommend it. She complained that I had been with her for 40 mins when the NHS only allocatedf 10 mins per patient.

You guessed it, I left in tears.

With private doctors (who believed how ill I was) I tried T3 which just didn't make any difference at all. I had read a lot about Armour and under a private doctor I gradually built up the amount of grains, I felt no different after months. I basically tried for the whole of 2008 stopping and starting armour with or without T3.

It sounds so easy to write off a year in one sentence. My life consisted of getting up around 10am and sitting at the computer or watching tv until I could gather enough energy for a shower. Having a shower was a big ordeal because it involved standing for so long, I was thoroughly drained afterwards.

Preparing and cooking food was out of the question most days because it involves standing at the cooker. House-work was out of the question too.

For most of the time I would either be in bed or on the sofa. Even the weight of my head and arms were too much effort to support. I had to have cushions to support them.

I was generally low and had periods where I really was rock bottom and just felt a burden to my family and could not see that I was ever going to "live" again. I felt as though I was grieving for the person that I used to be.

I avoided seeing GP's because they were unhelpful. I wrote to my GP explaining that I seemed to be the only person trying to get to the bottom of why I couldn't get better.

I tried acupuncture, saw a naturopath together with paying for my own armour and supplements like B12, zinc, vitamin c etc. I realised that I just wasn't going to get better over night so bought a portable mobility scooter. My husband was able to put it in the car and I could go round the park with our dogs. When I was up to it we would take it shopping too, but to out of town areas because I dreaded seeing anyone that I knew.

I hate it when friends/aquantancies suddenly become health experts and tell me that I have cfs or tell me that it cannot possibly my thyroid to blame as I couldn't walk. I have lost friends as I have tried to explain my dilema but they just seemed to think that I was a fraud because they had friends who just popped a couple of little while pills into their mouths each morning and were absolutely fine.

I heard about another Professor of Endocrinology in a different area, my GP organised through the PCT for me to see him at the beginning of 2009. I was thoroughly examined and was told that I had a small goiter (this has been the only NHS doctor to have felt my thyroid) my TSH was 15 but he said that I was only mildly hypothyroid. He asked me many questions and had a medical student present. There was me thinking that he was very chatty when he asked my husband about his job, he asked about our children, and even our sex life. He didn't seem to grasp just how ill I was. I thought that it was good that he arranged for lots of blood tests to be done, even the short synacthen test. The endocrine nurse was lovely and I was looking forward to returning 6 weeks later for a follow up.

I returned in March 2009 he gave me some purified levothyroxine to try as the capsules are just levothyroxine with calcium phosphate. He told that most of my symptoms were not thyroid related. He advised that I see a psychiatrist to see if I can have help because he felt that my symptoms were caused by a family bereavement, stress because my husband began working for himself and stress because we were not having a normal sexual relationship.

It all clicked into place why he was delving into family questions. I was so upset, I said that I did not agree with him and that my enormous tongue was not going to be fixed by a psychiatrist. I walked out. He told my husband that there was nothing more that he could do but would refer me to one of his colleagues at the same hospital ............

1 Reply

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  • My goodness Sue, you have been through soooo much. As I am reading your blog I am feeling for you all the way. How awful how ill you have been. I'm so sorry to hear that you lost friendships over it too. I know what you mean, people think they know one person with it and so you should be the same as them. Very frustrating.

    What a total let down the professionals have been for you. So distressing. XXX

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