Up and down today

Here are how things with me have been so far (an even longer story!):

January 2013 - I'm told by my GP I have elevated Anti-TPO antibodies at 84,000 (<34). TSH is at 0.69 (0.27-4.2)

May 2013 - My TSH has rocketed up to 22 (0.27-4.2) and my FT4 was low at 10.9 (12-22). I'm then put on 25mcg Levothyroxine, increasing to 50mcg at 2 weeks and then 75mcg for another 2 weeks. I'm given Wockhardt and Actavis Levo.

August 2013 - I feel worse despite my TSH being back within range at 4. (0.27-4.2) GP looks at me weird and asks me if I've been taking the Levo as directed, to which I replied "yes" as the only time I did not take the Levo was before the blood test. Because I still felt bad he increased my Levo to 125mcg and put me on Ferrous Fumerate at 210mg (which I switched to Spatone). Ferritin was 15 (30-400)

November 2013 - I get even more constipated than before and my thyroid levels are checked again. TSH is 4.3 (0.27-4.2) and my FT4 is 15.3 (12-22). Levo is increased again to 150mcg.

December 2013 - I sent a letter to my GP and the GP practice itself suggesting I be referred to an endo. Here's where things have gone downhill slightly: My GP tests me for Folate, Ferritin, Vitamin B12 and Vitamin D. These were all low.

Folate was 4.1 (4.6-18.7) - GP did not prescribe me any folate as I was only just out of range. Her words not mine.

Ferritin was up to 22 from 15 before (30-400). She has said if I get on well with the Spatone then she was more than happy to continue with it.

Vitamin B12 was 363 (180-900). GP has not said I'm Vitamin B12 deficient/suffering from pernicious anaemia but I've bought myself some Vitamin B12 supplements as suggested by my therapist and one of my friends at support group. So thank you guys if you're reading this! :)

Vitamin D was low at 43.6 (>75). GP prescribed me Vitamin D3 Fultium 800IU, but I was told by some people that that's not enough and it'd take me a year to get my levels anywhere near as good as the GP is hoping. So I bought a Better You D Lux spray that contains 3000IU. I know it wasn't what was suggested but it's cheaper (I don't work) and I can get 3000IU a day.

Anyway, regarding the endo - I sent 2 emails since Christmas. One was addressed to the main hospital reception as I didn't have the endo's secretary's name at the time. They replied and said they would forward it on to her. That was the last I heard of that.

I then sent another email, addressed to the secretary herself as I managed to get her name and I wrote that they are more than welcome to contact my home phone as I'm at home most of the time. I've heard nothing. And I've been feeling *rough*. I've even been told I *look* it.

I've also got a blood test tomorrow which I'm not looking forward to - at 11:30am. So I'm not happy that I've got it later than planned but that was all they had. It was either that or wait until the 20th! I'm just hoping - praying - that the GP will look at them and then think about fast-tracking my first endo appointment - which isn't until the 4th March.

So my therapist has given me the secretary's number and has said for me to really milk my illness. I've also been asked to request my GP to sign me off as I sign on at the Job Centre once every 2 weeks - and it's not as though I have trouble speaking to people. When I know what I want to say I'm actually very coherent but I don't like to be pushy or get things my own way all the time. I mean, heck, when I was little I was like that as I was an only child and got spoiled rotten, but it's different now, I'm a fully grown adult!

Jo xxx

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3 Replies

  • Hi Jo

    I don't post here very often, but I wanted to suggest that you either call the endo's secretary or the appointments number and ask if you can be put on a cancellation lIst. Most of the clinics at my hospital run cancellation lists, and I have found that if I am proactive like this then I almost always get a quicker appointment. I just call the appointments number and ask - it isn't being spoilt or demanding, it is simply being aware of a system that already exists to minimise unused appointment slots.

    Good luck!


  • I would just like to give a heads up to the contacting the secretary thing which I have been doing frequently when needed, it usually resolves any issues and can make being seen sooner, getting messages to your consultant etc a distinct possibility. However just recently when I had to contact a Consultant's secretary due to me missing a very very important appointment and finding that instead of being given another appointment I had been dropped completely out of the system and was advised that I had to be re referred! That small thing had previously taken me 18 months to do. The reason I missed the appointment is because my dog was taken critically ill and we had to rush him to a specialist hospital where he was "dying" for many days and everything else in my head just went out the window...Anyway, when I got through to the secretary she said these chilling words to me "we have been told that we are no longer able to intercede for the patients, if I make any attempt to make you an appointment then all hell will break loose, I'm sorry I can't help you" !! I am horrified and wonder if this is going to be rolled out everywhere because if you are unable to talk to the consultant's secretary then you can be pretty much sidelined unless you write and that can be a process that could take weeks....months.

  • And friend of mine is a Consultants secretary and she is not able to deal with appts either, she can pass messages and emails to the doctor but not get involved with the appt system.

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