In search for a second opinion from my consultant at Whipps Cross Hospital (where even the registrar in ambulatory care suggested I go elsewhere) I today tried to make a private appointment with Dr. Peddasomayajula as I read a post by @S4ndy saying how he goes by symptoms and not bloods etc. I couldn’t get through on the phone and so left a message on a landline and then sent a text to a mobile number this morning.
(As an aside, I have found 8mg to be my dose, to the point where I felt positively chipper. Stayed there after my parathyroid removal for a month and then started to reduce – wham – low grade fever and all the other symptoms of throat neck, head etc. Doctor gave me antibiotics which did zero and so I took it upon myself to administer sickday rules but did that for the full 14 days as I had left it so long by this time. But that did the trick.)
8.00pm tonight the doctor rings me to say his secretary is off and he is about to go away for three weeks. We had a long chat (nearly 20 minutes) where I explained my predicament and how I kept cancelling my appointments as I couldn’t face hearing my consultant tell me one more time that I am better going by bloods and the second PET CT (where I had gone up to 20mg at one point prior)
He said that there was no point doing a PET CT until you are off pred or at least on a very low dose and that he goes by what his patients tell him rather than blood results etc. He said to reduce pred by .5mg over SIX weeks and to do it very slowly like that trying to get through the first week of potential symptoms as that is common. Are you loving him so far….. then I asked about seeing him and he said not to bother to go privately but to request to go to his NHS hospital via my GP which might take a few months (that’s fine I have enough pred to last me a lifetime right now) and to ring his secretary in September so that he can have a look for me on the system and make sure that I see him and not a registrar.
Can’t tell you how I feel right now, well I am sure you know … whoo hoo … can I celebrate with alcoholic prosecco!!!
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Sophiestree
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Whipps Cross is part of St Bart's Trust. As is Mile End where I was given the professor head of rheumatology. He was hopeless, giving me two bad bits of advice, so I got rid of him. I wonder if this is the person you saw (Dr C).
The GP and I agreed that I don't need a rheumatologist at the moment. I didn't go anywhere else but have a list of possibles in case I have another flare and the GP gets concerned.
So pleased. Mostly this kind of support is all we want. PMR etc is a depressing business and then to feel your rheumatologist almost doesn't believe you because the inflammation markers in your bloods are low in spite of your symptoms is awful. It is not too far to Chelmsford so good luck.
That is exactly it isn't it. And amazingly, for the first time in months, I slept last night.... coincidence??? Me thinks not, I was clearly more stressed about the whole thing than I realised. I think Chelmsford is about 45 minutes for me so more than doable.
Brilliant, I know that feeling after finally getting to see a Rheumatologist that listened and discussed what next. Now I’m not seeing him, not the same dealing with Endocrinologists!….spoke to her 2weeks ago, blood tests done, said I can see her in a years time! Ringing tomorrow for results, feeling so ill, will go private and hope for the best…..I’ m sure something else is going on!….
Endocrinology is a strange one. They keep cancelling my appointments and I don't seem to get a new one even though I have just had a parathyroid gland removed. Same with Respiratory, I have yearly CTs but no follow up appointment. So confusing.
Ha ha - no it was a tree in my garden where my young Schnauzer used to hide under watching my other large mad dog running around the garden, so I always called it Sophie's tree, seemed a good name to use after that when so many sites want you to have some kind of name or other. Sadly she did not see 3 years old due to bad breeding and complete kidney failure. Devastating.
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