I am in need of your help today! I am 21 and have been diagnosed with hypothyroidism about a year ago. I am taking 75 Levothyroxine and still feeling crap. I also have a benin nodule on my thyroid. I have been diagnosed in France but since I am in UK, I had to fight with 3 GPs to be sent to a specialist who doesn't understand it's about me and not about my THS (which I know is really difficult to calculated so is most likely to be wrong) and gave me the wrong test to do. Also, my next appointment with him is 6 months after the first one and no one give me access to my blood and scan results, which I have been asking for for a long time!
As I am desperate to find a good doctor and finally have a normal life I am thinking of going private and was wondering if someone knows a fantastic doctor in London and I would also take any advice for private insurance, as I don't really know how it works here.
Thank you very much for your answer,
Amber
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AmbreLondon
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If you had a fine needle aspiration biopsy that will have been to determine whether your nodule is benign or malignant. Thyroid nodules rarely affect thyroid levels. TSH level isn't difficult to calculate. A blood test will tell you what your TSH level is. TSH is highest early in the morning and drops after eating and drinking so arrange early and fasting (water only) thyroid blood tests.
The Data Protection Act entitles patients to their test results and ranges. If your verbal requests have been ignored make a written subject access request for your results. The hospital should respond with the results within 40 days. ico.org.uk/for_the_public/t...
Most private endocrinologists will require a referral letter from your GP. Email louise.roberts@thyroiduk.org.uk for a list of member recommended endocrinologists.
You will need to pay the doctor's consultation fee and the cost of any tests the doctor recommends. If you have private insurance you should make sure the doctor you want to see is on the insurer's approved list and ask the insurer how payment is arranged. If you don't have private insurance you will probably find that pre-existing conditions ie hypothyroidism is excluded if you take out insurance.
Thank you for your answer. I did have a biopsy few month ago and the nodule is benign.
What I meant when I said the TSH level is difficult to calculate is that the result is not really trustworthy because it is not stable. My first TSH test came up at 14.7 and 1 week after under the same condition, approx same time and no meds, it was at 6.8. But anyway, I do not really care about the exact number, what's important to me is how I feel!
I will write an email to the hospital, thank you very much for this but 40 days is extremely long!
I will ask for the list of recommended endocrinologists but if I understand correctly you are saying that I can't take a private insurance with an existing problem? I don't have any at the moment.
TSH fluctuates throughout the day which is why it is recommended that members have early morning blood tests when TSH is highest and fast (water only) because TSH drops after eating and drinking. A virus or other non-thyroidal illness can raise TSH which is why a diagnosis isn't usually made on the first abnormal result. In the UK some doctors wait up to 3 months to retest because a non-thyroidal illness will be expected to have resolved in that time.
It doesn't mean that the hospital will take 40 days to give you your results but if they don't provide them within that time you can make a complaint to the Information Commissioner's Office.
My understanding is that private health insurers won't cover pre-existing conditions unless the insurance is offered as part of a work place scheme.
Thank you very much, I will contact some health insurance to see if I can have it cover. Do you have any to recommend me? And do you think going private would give me better care?
No I've not had private health insurance so can't recommend any companies.
It depends who you see privately as to whether you will get better care privately. Many NHS endocrinologists do private work so a rubbish NHS endocrinologist they will presumably be rubbish when seen privately.
The thing is that it's the endocrinologist that asked for this blood test, I have done it the hospital and the results haven't been send yet to my GP ... it's been 7 weeks now! And the hospital doesn't want to give them directly to me. And when I ask for my results at the GP, they tell me I need an appointment but it takes 3 weeks minimum to have one
I would suggest caution. Many private endos are the same docs as the nhs endos many of us struggle with. Just ensure you know quite a bit about the doc before getting involved.
Your other option is to self-treat ... add T3 (purchased off the web) to your T4. Keep this in mind if you do go private, and the doc takes your money but provides no result.
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Should I add T3 to my NDT?
Should I be concerned?
Private!
Should I confess?
Should I feel well?? 
