I'm 32yo and I've been diagnosed with hypothyroidism over a month ago. My GP "failed" to tell me (saying there is nothing to worry about) 4 years ago that my TSH was 6.45 so I never gave it another thought until this August when I went back and begged to have some blood tests done as I was feeling like a zombie for the last year. To be honest I blamed my weight gain and complete exhaustion on my job and long working hours. My blood tests came back and my TSH was 130 and T4 4.1 (?!?). They put me on 50mcg Levothyroxine and after 2 weeks I went back and the put me on 75mcg as I was feeling jetlaged constantly. I'm feeling slightly better after 6 weeks on medication but not sure what feeling normal feels like.
I have a hospital appointment with an endocrinologist tomorrow and I don't know what to ask!? Where do I start?
I want to start trying for a baby as well, how long do I have to wait?
Should I change GP's? I think it's outrageous that I had to put up with this for so long and it affected my life so much.
Any advice would be much appreciated! Thank you
Written by
MrsOC
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If all goes well, let's hope you're sorted within a year.
You should be able to pressure your endocrinologist for tests for vitamins B12 and D, ferritin, folate as well as thyroid function tests. Then you can hit the ground running and address those issues as soon as possible.
I keep nagging at my sister not to forget to ask for a thyroid function test, as her last TSH was nearly 4 and I felt bad at that level. I suppose some GPs think we'll come back if we feel bad, not realizing that we start to think "What's the point?".
When your TSH was 6.45 it would have been over the reference range. I'm assuming the test was carried out because you had symptoms suggestive of hypothyroidism. Your doctor should, at the very least, have said you should be re-tested three months later to see if your problem was getting worse. It would also have been possible for your doctor to have started treating you with a level of 6.45 without waiting three months.
If you were to say that forcing a sick patient to wait another three months before treatment is sadistic I would agree 100%. But your doctor was also incompetent. The NHS is quite happy for patients with hypothyroidism to be tortured for three months, but four years is really not done, don'tcha know.
I suggest, if you can afford it, apply to get a full copy of all your GP notes and records at your surgery. A complete copy will cost £50. You need to do the following :
Write a letter addressed to the Practice Manager. You only need a couple of sentences saying what you want :
Dear Sir/Madam,
Subject Access Request
Your Name, Date Of Birth, NHS Number xxxxxxxxx (if you know it)
Under the terms of the Data Protection Act 1998 I would like to buy a copy of all my GP and surgery records, stored in electronic, paper, or any other format .
Yours faithfully
Obviously your address goes at the top and you sign it at the end. Post the letter and pay for recorded delivery. Keep your receipt so you can prove it was sent. When you go to collect the copies you must take proof of identity with you.
Once you have a copy of your records you should make a complaint about your lack of testing and treatment over the last four years. Your treatment has been appalling.
Make sure from now on that you get printouts of all your blood tests. With each set of blood tests also note your symptoms at the time the blood was taken and score them out of 10. You should also note your dose of thyroid meds. You want to know how your symptoms reduce or get worse as your dose changes.
There is an alternative to getting printouts, but it depends on the surgery whether or not the option is available. Eventually, everyone is supposed to be able to access at least part of their GP record online, including blood test results. Some surgeries have had the option available for a year or more, many are still dragging their heels. You would need to take proof of identity and ask for online access.
It might be a good idea to do things in the following order :
1) Ask for online access to allow you to book appointments, request repeat prescriptions, and view your GP records. Take proof of identity with you. You will be given the information necessary to allow you to register online. Do that first and see what you can see. Print out paper copies of any blood test results that are available, particularly if they mention your thyroid.
2) Send in your letter requesting a copy of your entire GP record.
3) Once you have your complete copy, make a complaint.
The whole point of doing things the way I suggest above is that I want to reduce the risk of anyone falsifying your results before you get copies of all your records and make a complaint.
It is about time these negligent doctors are held to account for their actions ( or should that be non-actions !!!! ). A formal complaint to the Local Health Board/ Trust would also be in order. Stroppy socks on today ! ☺😈☺😈
I know this will be small comfort (or no comfort) to you, but having a TSH of 130 at diagnosis will actually be to your advantage in the future. Doctors are impressed by big TSH numbers because they think it means the patient is/was really ill, they weren't just attention-seeking and making a fuss about nothing.
Some people who are diagnosed with lower TSH numbers are at risk of getting their meds taken off them when the doctor wants to save money, or the patient complains they still have hypothyroid symptoms and the doctor wants a threat to make them shut up.
Get all your notes BEFORE you make a complaint or the odd result or parts of the file WILL go missing. Been there, done that. You dont have to say why you want your notes and it is better to actually act a bit ignorant at this stage. Once you have the full notes then complain, and be prepared for a bit of a fight, but stick to your guns as your treatment has been appalling. Check your house insurance as it may have legal cover which can be used for medical negligence.
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