Thyroid UK

My story - Part 3 - being a patient patient

I saw a Herbalist and spent a lot of money on mixtures and potions. I couldn't bare the taste of the mixture and couldn't wait any longer for improvement although I would definitely consider seeing a herbalist again if I need to for other complaints.

I tried to find out some more about the other specialist that I had been referred to at Sheffield, this was the 7th specialist that I saw! I cannot give too much information here because it would be easy to figure out his identity. I sent him an email saying that I couldn't attend the appointment because I could not face the disappointment. He phoned me and asked me to give him a chance and that he would try and help me. I saw him in May 2009.

I told him that I was very apprehensive about trying the purified levothyroxine that his colleague had prescribed because I thought that I would have another reaction. We both agreed that we would work together, keeping in touch by telephone because of the distance. He wanted me to start taking 50mcg but I said that I wanted to increase very slowly. I did my own thing as far as increasing, I phoned through to him with my blood test results every 6 weeks. My TSH was 45 and my Free T4 was 12 when I started. I increased by 12.5mcg every 6 weeks or there abouts.

I was thrilled that I was able to tolerate the medication but felt no difference. I saw him in January 2010 and told him that I felt there was room for another increase but that I still felt the same. I was not happy because he said that as I lose weight I will feel better. I know that my symptoms are not weight related. I nearly fell off my chair when he even asked what my financial situation was and suggested weight loss surgery! Can you imagine how my body would react to surgery?

Since being fully medicated I have lost 16lbs. The weight is coming off slowly but hopefully when I am more active I will lost larger amounts each week. I have crossed off some symptoms from my very long list and have definitely improved. I feel cheerful most of the time, I feel as though I am starting to join in with life again. I can take my dog for a little walk but still need the scooter if I venture out shopping. My skin is still dry, hair has stopped falling out but is still not nice as it was. My tongue is still enormous. I have to pace myself as I lose stamina very easily. I still cannot cope with talking on the phone, it wipes me out. I am frustrated that I want to do so much but just cannot do it. If I over stretch myself or have a few days away it wipes me out for over a week where I just lay low.

I am still hoping that I will improve more and more. I would hate to think that this was it as I long to cycle, walk and swim like I used to.

I see my consultant again in July. If I haven't improved some more then I would like to have T3 prescribed again, just a little as well as my purified levothyroxine. I am taking 225mcg at present.

I am in the process of writing to the doctors and specialists that I have seen because I hope that they will listen to me as it may help others. It makes me so cross the way that we are treated. I am also starting a group where I hope to pass on information and loan my books out.

I have put my family through awful times and we can talk about it now. As for friends, only a couple really "get it" but I have made new friends with thyroid disease and from my new hobby of card making and scrapbooking.

2 Replies

What a complete story, Suze, it's amazing how well you describe the slowness of the process to gradual step by step improvement. Wishing you all the best - the stamina that you clearly have developed is admirable. And the value of having your personal account on record here is enormous. Thanks!


I'm delighted that you're starting to improve Suze :-) It has been a long struggle for you but it looks like you've finally turned the corner. As you've discovered, pacing can really help - it can be frustrating but it does work.

I was originally diagnosed with ME/CFS many years ago and a local ME support group suggested that I do 70% of what I thought I could manage but always to keep some energy in reserve and it did help. It turned out not to be ME/CFS for me (and many others I suspect) as my symptoms went when I finally was diagnosed as hypothyroid and got on to the right thyroid medication but pacing works equally well for thyroid patients.

I hope you continue to improve and look forward to seeing more of your story.


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