NHS records held a secret: Nothing surprises me... - Thyroid UK

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NHS records held a secret

sy28
sy28

Nothing surprises me anymore ... I learnt today I am not 'fixated with thyroid' as NHS GP and two NHS endocrinologists would have me believe. According to coded NHS records my Serum TSH level was above range, 5.7, in 2016 prior to March 2017 hypothyroidism diagnosis when Serum TSH level was 5.1 - February 2017 TPO antibodies were 20. According to earlier NHS records Serum TSH level first showed a wobble at 3.84 in 2007. Why was this clinical evidence never passed on to me? Based on this evidence, according to the endocrinologist I am seeing, I should now qualify for a trial of T3. It pays to check your records, no matter how far back it takes you. A weight has been lifted. But ... endocrinologist still has to respond to these findings and she's already quoting from Nice 2019 draft guidelines as if they have already been implemented by NHS. Still holding breath till completely through hurdle.

14 Replies
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I know the feeling, managed to get it out of one GP my TSH had been hovering around the top of the reference range for a number of years before getting over 10.

Then after months of hassle managed to get (some) of my records which helped me piece a few symptoms together.

There are still some things which seem to conveniently be missing, but it has helped me see how my vitamins correlated with my thyroid levels and symptoms.

I hope the healthcare system realises soon that it actually doesn't help hiding our results as we will find out one way or another, I don't think it encourages people to worry about their health but feel more in control of their health and piece things together.

Good luck with getting T3, hopefully you can get better soon :)

The thing that frightens me is, the kind of person who finds this forum will probably also eventually find their records. But we are the minority, and the larger number of people don't question their doctors and don't research their illnesses. All those people will just suffer all the nonsense doctors trot out :(

Yes, I agree. Some of my family members accept everything the doctor tells them and even when they get a letter saying they are severely deficient in something and never get a follow up or even medication they just accept it and continue suffering and wondering what their "random" symptoms are! I have never trusted everything since I had a bad experience with endometriosis as an early teenager, some of the stuff I was told was terrible! Such as the pill would 'melt' it away!

Couldn't agree more with you!

You haven't provided references ranges, but I'm guessing neither your TSH level of 3.84 or your TPO level of 20 would have warranted mentioning in the Dr's mind, as they were likely both within their respective reference range. A TSH of 3.84 would have been unlikely to have been considered a 'wobble'. Information-sharing is a two way street though, and if we aren't told something we have to take responsibility for asking for it, and at least nowadays, thankfully we have the statutory right to have the information made available to us. However, there's nothing in the TSH and TPO results alone, that you mention here, that indicates evidence of a need for T3; what makes you think it does?

sy28
sy28 in reply to MaisieGray

Thanks for replying MaisieGray, since 2017 diagnosis I have had and still have persistent symptoms of hypothyroidism despite adequate, 150mcgms, Levothyroxine replacement, evidenced biochemically by Serum TSH [0.4 - 1.5mU/L]. I have noted I become symptomatic on reaching Serum TSH 1.06. May 2019 - July 2019 Medichecks test results consistently confirm there may be a conversion problem. Regenerous genetic testing evidenced genetic polymorphisms implicated in various pathways: DIO2 (T92A) rs225014 Heterozygous variant genotype TA, decreased ability of the enzyme to generate the active T3 hormone - though this latter evidence has been dismissed by Endocrinologist

Why do you think a trial of T3 is justified?

It supprised me that people still have problems with getting there test results. It's about time that all GP's implamented patient access. I have online access to all my tests for the last 10 years or so. This has made a big different to how I view my condition and has helped me understand when I have not been medicated enough. Previously had under range T3, which I wasn't even told about or the fact that originally my antibodies were really off the chart indicating hasimotos. These facts were never raised by my GP and all I ever had as a statement was your TSH is in range and so your medication is right. Ignoring how I felt and what was happening to me. So when I got access to my records I could look back and see that I did better on more medication, so upped it and have felt an improvement in my life. Also now seeing a private endo and much more involved in my health as it seams that the GP isn't there for me.

I'm just so supprised that more GPS are not signed up to the NHS service so that every person has access to there own information.

I'm afraid a lot of people still have problems getting access to their medical records, getting their full record, and then getting changes made to significant inaccuracies they find.

The access to patient records is definitely still a problem. Unconvinced by my GP's constant dismissal of symptoms due to 'normal ranges' I decided to access my record. Firstly I was met with mild resistance from surgery receptionists who insisted I needed to register online when the info on my surgery website clearly stated my user name and password would be generated by reception. Then I had to apply for further access to view my test results and coded records (after several days of waiting I visited my surgery in person to get those activated) and for the last 6 weeks Ive been battling to gain access beyond December 2017. I really don't understand why the resistance, but like you and the original OP the results I have been able to access have revealled problems never picked up/ignored.

Hidden
Hidden

Dont get your hope up re this, results like yours are often ignored and seen as irrelevant. I am confused by your endo. What is she basing the idea you need trial of T3 on? and why is she sounding supportive of this yet quoting immensely unhelpful guidelines?

People normally need a trial of T3 based on unresolved symptoms despite levo at a high dose and T4 at the top of the range with T3 still low or as a result of genetic test showing poor conversion from store to active.

Are you already on levo? Has your GP or endo checked your ferretin, folate, vitamin D and B12 as well. Has your T3 and T4 been taken?

sy28
sy28 in reply to Hidden

Everything in your second paragraph applies to me and I have Hashimoto's.

I could kick myself for not accessing coded entries sooner. It's proof original diagnosis is correct ...

Last week I had a blood test for arthritis. Looking through my medical notes for something else, I noticed I was diagnosed for this in 2009!

Following a botched operation, it took me and my solicitor over a year to get my full notes. My test results are not available on line and when I phone for them, I usually get "oh yes, you are THAT one!" Yes, I am!

How the hell could that be missed 😱

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