Seen Endo today - all set for another year

Hubby had day off and even though we had snow we drove to Sheffield. It takes an hour and a half to get there and it was not only quieter on the M1 but the hospital was too.

I showed "the man" my blood test results TSH <0.01, Free T4 23.9 (9-19), Free T3 5.4 (2.6-5.7) and my vitamin D came back at 127 (don't know the lab range).

He asked which vitamin d I took (as the level was only about 12 about 18 months ago) I told him that I buy vitamin d3 and he said that he would write to my GP asking her to prescribe Pro D3 1000iu. My GP told me there was only Adcal.

Next year I will have another bone density scan - I had one done in 2011 which was ok.

I told him that I take 225mcgs of purified levothyroxine in the Winter but will reduce to 200/225mcgs in the summer months. I also take 1 grain of naturethroid. He asked me how much this was (he did ask my GP to prescribe it but my GP refuses).

So that was the first 5 minutes of the consultation then would you believe that he then went on to tell me about his poor health and his operations, and then there has been the battle to take his little girl out of the country and details about that!

The first time we went there I could barely make the journey. I had to be in my mobility scooter as I could barely walk. This was 4 years ago. We always do the same thing, go and have lunch in Waitrose which is nearby.

What a difference now, I am going to the Ideal Home Exhibition next week, yes I still have a few symptoms but feel fantastic by comparison.

So for those of you who don't know me and are wondering why my Endo is not pushing me to lower me thyroid meds ...

mmm long story short, I had seen 3 other Endo's, Dr P, Dr S, you name it I tried it and the last Endo referred me to the one I saw today, I just could not face more disappointment and declined the appointment. He actually phoned me himself and told me to go as he wanted to help me. I take purified levothyroxine and naturethroid and he has just gone with the flow as I have increased my dose so slowly to get to the dose that I feel happy with. He has asked me to lower meds sometimes but I feel so drained and unable to get through the day if I do. We came to an agreement that he has pointed out some of the dangers that he believes could happen (no proof though) and I had a bone density scan.

So, if I lived in Sheffield then I would have been discharged a long while ago but because my local PCT continue to pay, I will go to see him in Sheffield for as long as.

One thing is for sure, it is so nice not having doctors insisting on me lowering my dose so that they are happy with numbers but I wouldn't be able to get out of bed. This is why I am a Trustee of Thyroid UK and want to help others. It took me over 5 years to get better and I believe that you CAN get better too. :-)

Sue

thyroiduk.org

9 Replies

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  • So good to hear this story Suze. It is a massive boost for those still on their thyroid journey.

    Jane x x

  • It makes a change to have a very positive consultation when both parties discuss and agree.

  • Hi Suze,

    Well worth your journey then! So pleased for you!

    I was interested in your results, so similar to mine and I don't feel I'm off the started block yet.

    What a relief not having a doc insisting on you cutting meds.

    May you go from strength to strenght. XXX

  • Suze, what a LOVELY LOVELY blog, thank you :)

    your story is marvellous and is nice to see you found a doctor you could 'strike' a compromise with, and fancy him calling you and begging you to go and see him and give him a chance to help! bless him!!!!

    xx

  • It is so great Suze that you have found help you needed!!. I am really happy for you. All the best and stay well.

    Exx

  • It's so good to read your blog and to know how well you are. What a wonderful endocrinologist you have to actually phone you to persuade you to see him! What I don't understand though is how your GPs can refuse a request from a consultant to prescribe a particular preparation for you. Have they given a reason? And as they don't prescribe it, why doesn't your consultant prescribe it for you?

  • Thank you all. I would be so happy if everyone could find the answer for them too :-)

  • Hi Suze - Just read your positive story posted a little while ago. Well done! I am really struggling and have been for some two years or more since the usual 'little white pill' started to fight back at me. I have a great GP who has prescribed T4, Armour, liquid thyroxine and now T3 - none of which I tolerate. He also referred me to an endo who after seeing on two occasions now, does not inspire me with any confidence; in fact on the first occasion he yawned - very loudly - throughout the consultation. I felt like asking him if I was keeping him up! My GP says we should give the tired endo one more chance then he will find someone else if I am not happy - hence my question. Am I allowed to ask who your endo in Sheffield is as I live in Staffordshire and Sheffield is quite easy for me. Also what is purified levo? Is that the same as liquid thyroxine? Thank you in advance for any help you can give me as I am about to face a difficult time as my husband has just been told he needs urgent heart surgery and I desparately need to try and feel better in order to help him along the way as he has always been the one to help me. Sorry, that sounded as if I was feeling sorry for myself!! love Flo

  • Florence-Ann, sorry to hear of your struggles.

    When you say that you cannot tolerate levo, armour, liquid levo and T3, what happens exactly? Do you start off with a tiny amount and increase very very slowly?

    I don't know what is in the liquid levo to know whether it is similar to purified levo??

    Mine is simply levothyroxine in calcium phosphate, they are hand made capsules. They can be made with other exipients besides calcium phosphate but they were fine with me. I started on 25mcgs and it took me about 14 months to get up to 175mcgs, I now take 225mcgs plus 1 grain of naturethroid and will drop by 12.5mcgs when it warms up outside.

    You can ask your GP to prescribe the purified levo - you just need your pharmacist to have an account with Martindales and the Pharmacist will tell your GP what to write on the prescription.

    I know that I have an Endo who doesn't insist that I lower my dose because of my blood test results, however I believe that we have got along and got better because of my circumstances, he saw how many specialists and doctors that I had seen and said that every doctor wants to be the one who finds the answers. He left me to my own devices really, he didn't guide me, I increased at the rate that I wanted to. He has said some things that I disagree with but have never said anything, my aim was to for him to get the GP's off my back which he has done. He is willing to prescribe armour as he says that he cannot get hold of naturethroid (der) and asked my GP to prescribe it but she refuses.

    What I am trying to say is that I wouldn't recommend him, I know that he has upset many people, but of course if you do want more details then I will give them to you by pm if you like.

    If you are not too far from me in Solihull then do come along to my next Support Group, date to be arranged.

    Sorry to hear about your husband's health problems too, I really hope that you can get to the bottom of this soon.

    Sue

    thyroiduk.org

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