Good versus bad

So the bad news is this week that I have finally reached my limit of absence/'reasonable adjustments' at work, so they are looking to 'retire me due to ill health (I am 33!!!), had applied for voluntary redundancy and was really hoping to make it that far before it came to this but...not to be. Gutted.

The good news.... my armour is finally starting to work again a bit, I had to lower to 1 grain for 1 day to see if it was the armour that was raising my bp, it wasnt, so I raised to 1.5 again but it knocked me quite a bit and it has taken a good few days for me to start feeling a bit of a benefit again. As soon as I get my new prescription Im going to go up to 2 grains, I will have been on 1.5 for about 2 weeks by that point.

Even better news is....as some of you may know my GP is COMPLETELY against me being treated for underactive thyroid, totally disagrees that this is what is wrong with me and refuses to discuss any aspect of it further. He is adament I have CFS and when I last saw him he basically said he would only keep writing me sick lines if I followed his advice. So when he recommended I saw an NHS CFS specialist I had no choice but to agree. He stressed very strongly that he held this doctor in very high regard. (Apparently a leader in his field) I subsequently found out the doctor in question is a psychiatrist so the first appointment letter that came through I binned (I have been through all this before) but when my GP then questioned me on it I had to say I didnt receive it, I got another appointment through and the appointment was today. I went along on the defensive, fully expecting them to agree it was CFS/in my head, recommend CBT/counselling etc etc.

Well....I couldnt have been more wrong!! The doctor allowed me to speak, I told him all about not agreeing it was CFS (I nearly didnt as sometimes its just easier!), all about my thyroid research, my journey, having to pay privately, he took a full history and we discussed everything, he said he had never met a case like me!!! lol. He was aware of a lot of the research and hypothesis I was talking about, knew that the TSH test isnt everything and that sometimes you can just be underactive without test results being particularly out. In fact he said that if I had come in and asked for a trial of thyroxine he wouldnt have said no. He said he fully agrees with me, that it is very likely thyroid (although he is not a thyroid doctor), that I am right to be doing what I am if it is working and that I seem sensible and responsible enough to know what I am doing (a compliment from a psychiatrist I assume!!).He said he knows that edocrinologists tend to panic as soon as your test results are out of the ranges. He finished up by saying he will be writing to my GP advising him that he shouldnt be freezing me out, that he should at the very least be monitoring me and that he fully agrees and is supportive of everything I told him!!! I cannot believe it!!! Im still in shock. It may not make much difference but he is the first doctor in 11 years (bar Dr S) and certainly the first NHS doctor to actually listen to me, believe me and to act on it! Take that GP!!!!! lol. Fingers crossed I am finally getting somewhere!

7 Replies

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  • Good news indeed!

    Surely they should want us to be well enough to continue working, with adjustments (flippin' heck, retire at 33?). Definitely your GP should be working with you not against you, and at least monitoring - I agree, having been told by my GP that CFS/ME wasn't a 'bad diagnosis', and said I should accept it - nope, just a co-incidence after half my thyroid out?

    Best of all you're feeling better, and on NDT (others will have knowledge of dosage, sorry I don't) - hope your health continues to improve.

    Hugs Jane :D x

  • That's great news and sometimes anyone other than an Endocrinologist can make the right decision.

    I am glad Armour is beginning to work, and if you haven't seen this link it may help.

    stopthethyroidmadness.com/m...

    Best wishes.

  • Shaws

    Many thanks for the link, I have recently ordered the STTM book, although yet to start it and I have had a wee look at the mistakes previously. I am still trying to work out if I fall in the 'adrenals' category as I have a saliva test which says I am low throughout the day but I didnt realise I had to stop taking my high BP meds when I took it and I cant find anything to tell me how that would have skewed my results, so still trying to work that out. I am certainly not 'soaring' on NDT by any stretch of the imagination, although I have had a number of 'good' days and a small glimpse of a normal life again but alas it is still early days. Put my dose up to 2 grains yesterday and felt horrendous. Now cant remember if the internal pain was there before I increased which made me think I needed it. Either way I have gone back to 1.5 today and feel a bit better but not great. Im sure I will get there eventually!!!

  • Thanks Jane :) xx

  • That is fantastic news! I have to say that some of the best doctors I have had have been psychiatrists. They explain everything and don't treat you like an idiot (as many doctors do!) I wonder if we've seen the same guy, lol.

    I was treated with T3 by my psychiatrist years ago, before I was diagnosed, because my blood results weren't great (but in range) and T3 has been known to help with mental illnesses. I felt great. Shame it was stopped :(

    I hope you continue to improve. This guy seems great! Could you please message me with details of this doctor so that I can pass his info confidentially to Louise in case anyone else with "CFS" is needing to see a specialist. Many thanks.

    I hope you continue to improve. It is lovely to hear good news :)

    Carolyn x

  • Hi Carolyn,

    Sorry for the delay in response, havent been on in a few days. You are right he is the first doctor who hasnt treated me like a complete idiot. Unfortunately he isnt going to treat me as I was referred there for 'CFS' and he agrees I dont have it so back to the GP I go, not entirely convinced his letter is going to make any difference but we shall see! Yes I will indeed message you the details of the doctor, just give me a few minutes.

    Gail x

  • Many thanks Gail :)

    I wonder what people have to be referred with for him to treat them.

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