I was recently told by an Endo that I definitely have Hashimoto's (proven through antibodies blood test, ultrasound scan and fine needle aspiration) but because my TSH levels are 'normal' there is nothing that can be done until the antibodies eventually damage my thyroid so much that I become hypo. He also said my symptoms were caused by stress and that he didn't think the pressure I constantly feel in my neck and the sensation of being strangled and chocked was anything to do with the Hashimoto's!
I then went to see my GP for his opinion on all this and to ask him to do a T4 test but he said the lab would only agree to do that if the TSH level was abnormal and that he couldn't give me any treatment while my levels were 'normal'. After sobbing in his surgery for a few minutes I went home and spent a couple of weeks reading all the info and advice on Thyroid UK and in research papers and books. I then went back to the GP having made the decision that if he still refused to help I would change GPs. As advised by Thyroid UK, I gave him a marked up copy of the hypo symptoms checklist and a copy of my notes, which set out what I'd learnt about Hashis, the unreliability of TSH and reference levels and how my symptoms affect my quality of life. He amazed me by reading them straight away and discussing them with me. He then said he would insist that the lab do a T4 test as well as TSH and he also ordered blood tests for Vit B12/Folate profile, Vit D, Calcium adjusted, C-reactive protein, Ferritin, Full blood count, Liver profile, Lipid, TFT: screen or diagnosis and Urea & electrolyte profile. Finally, he said he would search for an Endo who specialises in Hashimoto's/thryoid problems rather than diabetes, which is what the Endo I had seen specialises in.
The change in his attitude was astonishing and it's all down to Thyroid UK's advice on how to get the most out of GP/Endo appointments and to stick up for yourself. So a huge big thanks to one and all. I still have a long way to go and it makes me very cross that it has to be this way but I feel like I'm back in control now. What I've learnt is that you have to go to your appointments as prepared as you can be and be adamant that they listen to you. Good luck everyone!
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Confused77
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Congrats and well done you for doing your research and sticking to your guns - as helvella has already said we can help up to a certain point but your determination did the rest.
This is an extract from an article in Pulse and Dr Toft, ex President of the British Thyroid Association says that with antibodies you should try to nip it in the bud.
2 I often see patients who have an elevated TSH but normal T4. How should I be managing them?
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.
That is great news! A lot of the time I think the GPs just don't know enough. They are just told "prescribe levo only" and "TSH is infallible" and other such nonsense and they don't know any better. Going in and educating them can sometimes be the key to getting their cooperation. After all, most of them went into this career to help people. Of course there will always be some who are so arrogant that they would not deign to listen to us lowly patients!
Well done for sticking to your guns! That is great progress. Please let us know how you get on
Carolyn x
Confused no longer - Brilliant - just what we're trying to do - empower people.
Of course, as Rod says, you are the one that has learnt & even educated your GP a little (luckily you found one with time to listen!) Funny how we can spell psychological! (brain fog permitting!) OK I copied your spelling lol!
How uplifting for me to read this, I can imagine you feel that you can really move on now. How inspirational for those (me) who are struggling with GP's (with dare I say - a lack of understanding of topics). Well done for persevering!
I teach in Further Education , and unless I keep up with masses of research to keep me up to date (many late nights!) - how can I teach everything up to date in the curriculum? No you Can't cover everything in print. At some point you have to admit and say "I'm not sure about that one - but I'll get back to you" I believe it's the same for doctors, they are banging patients in and out every 10 minutes from one extreme to another and can't possibly know everything in so much detail. That's why they have specialisms.
So why don't they just say "I'm not sure, I'll look into it, can you re-book to discuss further" but deal with it, rather than over/under prescribe or worse - fob off?
Therefore I would say that you did his research for him by digging much deeper, and that he seized this opportunity for what is known as CPD (continuous professional development). He can now thanks to you - diagnose the next patient with similar condition - immediately!
Thanks so much to everyone for their comments and best wishes. It would be great if my blog helps to give others the encouragement to keep pushing for what they need.
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Take care and be well!
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