Private appointment update. Why do we have to question our specialists?

[Lisa254]

Hi, I just thought I would update on my experience of going private.

I was diagnosed with hyperthyroidism 7 months ago I had to wait for my first endo appt on nhs for 4 months. This endo said my gp had controlled my thyroid well on carbimazole as my bloods remained ‘normal’ since a month after diagnosis. I had been feeling fine throughout this time working full time successfully passing exams for work running around 26ish miles per week then I saw the endo... it was like she had a voodoo doll in her office!!

The day after I left her office I began to get really ill with hyper symptoms and I have been like this ever since. I saw this endo once more then she left I then had another endo and by this time received my 4th different thyroid diagnosis he said I’ll see you in 8 weeks time. I then got a letter through the post which stated my next appt was in 6 months time!!

I didn’t want to wait this length of time so I called his secretary and she said due to annual leave and stresses on system she would try her best to bring closer but was unsure. I decided to go private.

I researched a thyroid specialist in my area and went to the appt he confirmed I do not have an auto immune disease I have hyperthyroidism as some of my anti body tests are marginally elevated and apparently can slightly fluctuate from day to day. I asked him about my heart rate, it doesn’t race but it beats hard so I am aware of it not all the time but generally in the morning and at night... he said this has nothing to do with my thyroid and I have to go for an ecg... is this correct? I thought loud heart beat or racing heart is a symptom of being hyper. I also asked him about my eye movement causing dizziness he said again this isn’t to do with thyroid disease.

So I guess the reason why I’m posting is for anyone thinking of going private and splashing out I would really consider this carefully as will you get any further than what you have with an endo on nhs?, sometimes it’s good to get a 2nd opinion, (even if I still do not agree with all he said!) I do feel I have learned abit more but I guess all I want is someone to wave a magic wand and to make me feel better so I can get my life back!!

[Rmichelle]

Bring on the magic wand lady🌟🌟 i will pm you later.

[Angel_of_the_North]

Er, raised antibodies is autoimmune - both Graves and Hashimotos. I have lots of ectopic beats (like you) but I'm hypo. It's best to go for ECG and then possibly a 24 hour Holter monitor (very itchy!) and an echo at cardiology. That way you'll know if it's anything to worry about. Mine aren't, even though my heart beat sounds like Bob Marley playing live.

Do you have your actual blood results?

[Lisa254 in reply to Angel_of_the_North]

Hi angel of the north, it’s so annoying isn’t it!! Although bob Marley tune isn’t so bad ha thanks after reading your message I called the docs to sort the ecg out 😊

I have had 2 endo now say the same thing about not having this auto immune issue and one saying I have very mild graves ...it’s so annoying having to question them all the time!!

my tsh receptor anti bodies were 2.2 (ref -1.75) and serum anti tpo antibodies 45 (ref -34) these were from 4 months ago when I was diagnosed with acute thyroiditis.

i said to him they r elevated but he said not to the extent of graves/Hashimoto and they wouldn’t diagnose on these figures 😳. I’m still treating myself diet wise etc as auto immune as it’s still beneficial !!

[Angel_of_the_North in reply to Lisa254]

So you might have Hashis and Graves together.

I was very impressed by the consultant in cardiology, so worth trying for a referral. He actually used a stethoscope and a watch, and drew diagrams of what the heart did and what the ECG meant - and listened!

[Lisa254 in reply to Angel_of_the_North]

I know that’s how I read it ...I think I’m a strange one haha!!

Oh it’s so much better when they explain things hopefully I’ll get the same good service as you!

[Angel_of_the_North in reply to Lisa254]

He did offer beta blockers if I found the ectopic beats too annoying, but said it would probably make my asthma worse, so I didn't bother. Extra T3 has helped.

[Lisa254 in reply to Angel_of_the_North]

That’s good it’s helping, I only take propranolol when my heart is racing as it makes me feel strange and gives me bad indigestion!... I’m hoping my carbimazole will be reduced and then it may help 🤞🏼