I am at the beginning of this journey and i am already confused. I have contacted bupa and arranged to see an endocrinologist next week privately, if treatment doesn't change or if it stays the same I'm not really concerned just want some answers and i know a routine endocrinology referral is not on the cards from my GP as it is all very routine, and unless things are more complicated they don't refer. He told me I was medically well with a TSH of 6.25, i don't understand the numbers but I do understand how I feel which is not very well at all. Im on 75mcg of levo atm and only 9 weeks into this journey. I know I have to take things slowly but I would really like to know when I can expect to feel better and when I can go back to work.
paying to see a private endocrinologist - Thyroid UK
paying to see a private endocrinologist
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Be aware that private does not necessarily mean any better than NHS Endo's so you may be wasting your money. Why not name the Endo and ask for comments via PM from other members? Alternatively ask Louise Warville for a copy of the Endo list.
In the meantime ask your surgery for a copy of blood test results, you're entitled to these although there may be a nominal charge. As you've realised many GPs are clueless about thyroid disorders.
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If your GP says 'He told me I was medically well with a TSH of 6.25' he needs his thyroid hormones tested
I see you have only recently been diagnosed 9 weeks and assume your TSH was probably higher then (I assume).
9 weeks is a very short time and 75mcg of levo is usual as a starting dose and it takes about six weeks to kick in unfortunately but it is a slow procedure and meds are increased by 25mcg of levo each time till your TSH is around 1 or lower.
It cannot be rushed by taking more hormones too quickly. Our hormones take a long time for the TSH to rise high enough before we are diagnosed so it stands to reason that it will take a while to get to an optimum dose.
You are looking at several months to get to an optimum of hormones which makes you feel well and back to normal health.
When you are due your next blood test it should be the earliest possible and don't eat before it. Also allow about 24 hours between your last dose of levo and the test and take it afterwards. This allows your TSH to be at its highest as it drops throughout the 24 hours of the day.
Always get a print-out of your blood test results for your own records and make sure the ranges are stated as labs differ and it's necessary for comments.
If GP hasn't tested Vitamin B12, Vit D, iron, ferritin and folate ask for these too. Also antibodies. If you had antibodies it would be an Autoimmune Thyroid Disease called hashimotos which is the most common form of hypo.
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Usually you have a blood test around every six weeks with an increase in levo till you are on optimum and that means a TSH around 1 or lower but not anywhere in the range, i.e. top.
I went down the private route to start with as I wasn't feeling great and didn't want to bother my local very busy GP. My tsh was 5 or 6ish at that point. Actually, the private endo was great because he did really, really full bloods and worked out a few other things that were wrong. What he also did (which I don't believe my nhs doc would do...because he doesn't have the time) was listened to my symptoms...and when levothyroxine wasn't helping my symptoms (although tsh was 1 to 2) he first of all changed me to a mix of t4 and t3 and then to t3 only. He then wrote to nhs GP about my meds and GP is happy to follow his recommendations....so it all works...well at least for the moment. I don't believe that I'd be where I am without him...so, if you have a good recommendation, all I'm saying is that it can really help. It saves the nhs some work and you might get some really good treatment. If you tell me how to pm you, I can send his name.