After years of my blood test results coming back "normal", despite all my symptoms of hypothyroidism, I have a private appointment with an endocrinologist on this coming Wednesday.
Last year I saw an endocrinologist on the NHS. I had waited a long time for that appointment. He was a Professor...and he treated me abysmally. He was far more interested in his computer screen and my results, than he was in me as a patient. His report to my Dr complained of my list of 18 symptoms. He addressed only two of them.
He told me that I should continue to carry a hot water bottle to combat my deep feeling of inner cold, and on the occasions that my legs swelled, I should take a diuretic. I found this less than helpful. My legs were swollen, and heavy, as were my feet, ankles and hands. It isn't always possible to carry a hot water bottle, and cold noses don't hold hot water bottles easily!!
I still have all the symptoms I had, and a few more have joined the list.
My weight has shot up again over the past two months...and shows no signs of stopping,
I wake up with swollen feet. Despite strong diuretics my feet, ankles and legs are swollen badly.
My blood pressure has risen...it is now just below the high zone, whereas normally it has been 120/80
My body temp is 35.4 on average, and I'm more concerned. Something is definitely wrong, and I need to know what.
Does anyone have suggestions as to how I can get the best result from this coming private appointment? It's so expensive, I will not be able to go this route again.
Many thanks for reading this, and for any help you feel able to give.
Written by
1tuppence
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1Tuppence, Both results are within the normal ranges for thyroid levels and don't appear to indicate thyroid problems. You might ask your endo to check FT3 level as it's low T3 which causes hypo symptoms and to check thyroid antibodies but it will be cheaper to order your own blood tests from Blue Horizon and Genova.
Low/deficient ferritin, vitamin D, B12 and folate can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Your GP can order these or you can use the link above.
Hopefully seeing your endo privately will pay for more time with him. This should include a proper physical examination.
I initially saw my endo privately and with TSH only just out of range. My appointment was nearly 2 hours long. He took a full history and asked lots of questions especially about events in my life like child birth, bereavement, events that could possibly effect your mood and cause depression!
Had it not been for the thorough
physical examination i think he would not of diagnosed me.
My body being cold to touch, my pulse low, think he even checked my breathing rate but the deal clincher was my slow ankle reflexes which is apparently a classic sign of being hypo.
He diagnosed me and started me on thyroxine.
Two years down the line and i now have taken control of my own health through everything i have learnt from this fantastic forum. Keep reading and learning all you can and don't give up.
Hi Sparkly, thank you for taking the trouble to reply.
Could you give me some idea of the symptoms you had, which made you see the endo?
Both of the GP's in our practice, individually, and two years apart, thought I was hypo until my blood results came back. There seems to be so much reliance on blood test results........
I also had a lot of the symptoms you've described and knew something wasn't right with my health. I was convinced it was all thyroid related but all my tests like yours, over several years, always came back 'normal'. After much pestering on my part, I was referred to an endo, (diabetes specialist) who discharged me after one visit, even though my TPOAbs were extremely raised (1200 when normal was below 35). After being dismissed as having Chronic Fatigue, in spite of the antibodies, I demanded a second opinion - they finally agreed to an ultrasound,( I think just to shut me up!) which showed a large retrosternal goitre. Everything moved very quickly from that point - two biopsies and then total thyroidectomy.
So, I would definitely ask to have your thyroid antibodies tested as well as requesting an ultrasound.
Hope all goes well for you and you get some answers.Good luck!
thank you for your good wishes and suggestions. So far I haven't had any tests for antibodies, so that's one thing I'll ask about on Wednesday.
What made you ask for the ultrasound? or was it done in response to you asking for a second opinion?
I'm just hoping the endo I see on Wed has a more open mind than the one I saw on the NHS. This time I really want an answer as to what is causing my symptoms if it isn't thyroid related. The physio I've been having treatment for my painful knees with says I must not accept anyone saying that the fluid in my legs and feet is caused by the osteoarthritis in my knees.
It was the second endo who decided to to the ultrasound - I think he was making more attempt to be thorough as I'd got the second opinion by writing to my MP, who then made representations on my behalf.
Hope your appointment goes well tomorrow- I always find it useful to take notes and questions written down so my nerves don't take over!
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