"Unhappy with endocrinology department"

About: Southmead Hospital / Endocrinology

(as the patient),

I was diagnosed hypothyroid in May 2013 and put on Levothyroxine. Despite my TSH reducing and coming back within range I still had overwhelming fatigue and my Levothyroxine was reluctantly increased. I was referred to an endocrinologist in December, who I saw in January this year. Here are the things this endocrinologist did/wanted me to do and the problems I had with each thing:

- They ordered a coeliac screen and told me to do a gluten challenge - but did not tell me for how long I needed to be eating gluten for and as a result I was tested 2 weeks after the test was originally ordered. I didn't know I had to continue eating gluten for much longer than 2 weeks and the test came back normal yet I was only tested for total serum IgA and not the other Ig subtypes.

- The endocrinologist ordered an ACTH stimulation test because it was suspected that I had Addison's disease. Before the test I drank coffee and I after the test was done I found out online that coffee artificially raises cortisol. I was not told this at any point during the consultation.

- They ordered an antibody profile and I was found to have positive speckled antibodies (ANA). Apparently because of this I was tested for other antibodies and was told me they tested me for Anti-Jo1 and Anti-SCL70 but on the printout there is no mention of either of these, which could point to me having another autoimmune condition, say, like Lupus or Scleroderma.

I went to my follow-up appointment exactly 6 months after and this endocrinologist then advised me to go gluten-free, since the coeliac screen was negative. I was told they didn't want me to undergo a biopsy for gluten sensitivity because this doctor didn't want to put me through such an unpleasant procedure. Even though I went gluten-free my anti-TPO antibodies increased and I felt as though this doctor was not giving me the right sort of advice due to them increasing.

As a result I felt like giving up doing anything to help myself. I came close to ending my treatment on the Levothyroxine but I continued and my hypothyroid symptoms returned and some of them worsened. I have contacted my endocrinologist's department for answers to what is happening to me and the secretary has forwarded emails and telephone messages from me and I receive no reply to either. The endocrinologist never seems to be in.

I am now waiting on my six-month follow-up which is due this month and I have received no letter telling me this. If my other consultants can send me a letter regarding appointments in six-months' time, what is so different about this particular department?

I am extremely annoyed, upset and unhappy at this treatment and if I don't receive the treatment I feel I deserve to help bring me back to full health I will have no other option but to inform my local MP and the Ombudsman about this.

Do you have a similar story to tell? Tell your story & make a difference ››