Hi: Hi, i am 38 had tt over 12yrs ago after... - Thyroid UK

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lisawhitehouse101 profile image

Hi, i am 38 had tt over 12yrs ago after graves disease & lots of problems. felt really well on levo for past 12yrs but now having a real crisis. developed anemia 6mths ago, put on iron supplement 3 times a day and everything has gone to pot! trying to piece myself back together as even an endocrine proff i saw seemed to know less than me!!! after becoming bedridden for a week with symptoms of fatigue and brain fog etc etc now convinced my gp to let me increase levo & reduce iron to one tablet only, as i think i need to get my thyroxine levels stabilised first to alleviate my immediate symptoms, by day 3 of 200mg i have felt improvements in my symptoms but i know im far from well. waiting on results from ATCH stimulation test due on monday, also seeing a nutritionalist to help me look at supplements as my vit D is on low side. my long term plan is to try an alternative to levo as my theory is my body has ran out after years of t4 only, which is why im getting anemia and adrenal symptoms now. but also scared of making the change. interested to hear more about making that change and what to? ive just bought the stop the thyroid madness books but as it is america based not sure what is available in uk. my iron levels are now ok so hoping to come off iron before i make the switch then at least i can concentrate on my thyroxine levels only for a while... feel free to give me advice as i know i will gain more support from this community than all my doctors who seem to have run out of ideas and i believe i can and will restore my well being, just need some help and patience to get things right again.

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lisawhitehouse101
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Clutter profile image
Clutter

Welcome to the forum, Lisawhitehouse101.

It will help members to advise if you can post your recent thyroid results and ranges (the figures in brackets after results).

Thyroidless patients don't always convert T4 to sufficient T3 so adding Liothyronine (T3) to Levothyroxine can be beneficial if FT3 is low.

lisawhitehouse101 profile image
lisawhitehouse101 in reply to Clutter

Yes I agree i'm working on it, gp isn't too keen on handing them over!! But feel blindfolded trying to work it out without direct access.

shaws profile image
shawsAdministrator in reply to lisawhitehouse101

By LAW we are entitled to copies of our blood test results. Tell him from now on you wish to have copies of your test (with the ranges) ( for your own records as you are taking an interest in how to feel much better than you've been doing.

As Clutter says, many find an improvement with the addition of T3.

The next link is by a member who was at the dark side of her illness but is now healthy and well, thankfully. She now runs her facebook page too and is like many of us, angry that we have had to find a way to good health on our own and by TUK and members and doctors.

hypothyroidmom.com/suicide-...

When you next have a blood test it should be the earliest possible and don't eat before it but you can drink water. Also allow a 24hour gap between your last dose of levo and the test. This allows the TSH to be at its highest as doctors only take notice of it and not us or our clinical symptoms.

bluebug profile image
bluebug in reply to lisawhitehouse101

The law is the Data Protection Act 1998.

The maximum anyone can charge for a copy of electronic records is £10 per request - so ask for them ALL in one go if you feel you need to go back a few years.

If you wish for ALL your medical records the fee is £50 due to some of them being on paper. (According to NHS England you are only allowed to see them. In fact I know I was allowed to have a copy of my medical records so this information was wrong. )

A simple request to the receptionist in writing stating that you are making your request under the Data Protection Act 1998 for a copy should be enough. Then if the surgery refuses to give them to you after 10 working days or contact you to arrange an appointment with a GP to discuss why you want them, only then do you write a more official letter called a "Data Subject Access Request".

More information on doing that just phone the Information Commissioners Office helpline on 0303 123 1113 (Mon-Fri office hours) as they will tell you what to do while making a note that the practice hasn't complied.

Silver_Fairy profile image
Silver_Fairy in reply to bluebug

I have just requested an antibodies test result (blood test was possibly done at an appointment prior to diagnosis) and the hospital want to charge me £25!!!

bluebug profile image
bluebug in reply to Silver_Fairy

I'm not sure why you are replying to me or what this has to do with obtaining a copy of NHS test results/medical records.

If you want to post about NHS charges it's worth starting a new thread.

Silver_Fairy profile image
Silver_Fairy in reply to bluebug

It was a NHS test result.

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