NHS guidelines - interesting

Hi everyone

I went to the doctor for a follow up on my blood results. I was told by the doctor that the NHS guidelines are that you do not start medication for Hypothyroidism until you blood count is at 10+.

I was really surprised by this because I am feeling rubbish and my bloods fluctuate between 5.7- 7.9. Can't imagine how awful I will feel if I got to 10!

Thought I would share this nugget of info with you guys.

Bye

Sonia

12 Replies

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  • They are NOT NHS Guidelines! GRRRR. Silly doctor!

    He is talking about this twaddle!

    btf-thyroid.org/images/docu...

    L

    x

  • And twaddle it is! This is what got me banned from their facebook page

  • They won't treat you unless you are already super sick and your bloods are showing it. It's complicated for them, and awful for the patients.

  • There aren't any published NHS England guidelines.

    There are NICE guidelines - cks.nice.org.uk/hypothyroid...

    Notice the NICE guidelines mention T3 and T4. Your T4 level should have been tested as well as TSH. They also state:

    "Treatment of SCH depends on the specific clinical situation — in some cases a ‘watch and wait’ approach may be appropriate."

    GPs don't have to follow NICE guidelines either if the criteria set by the local CCG/health board overrides NICE guidelines or they don't want to.

    So I would suggest read the NICE guidelines in full, and print out the checklist from thyroidUK.org.uk and complete it. Then next time you see the GP ask him what actual guidelines is he adhering to and make a fuss as it is your health at stake. He can actually treat you if he just chooses to.

  • Mine never got above 4 & I was half dead. I was left with no option but to do it myself.

  • Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.

    If you have high antibodies, then NHS do recommend treating before TSH reaches 10, especially if patient has symptoms.

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online, but all should be doing this with couple of years.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later. Usual advice on this test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If on Levo, don't take in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide Levo dose on, best idea is to keep result as high as possible.

    If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about B12, folate, ferritin and vitamin D.

  • I thought it sounded odd. This doctor was particularly bad.

    I told her I could barely get out of bed the other day because I had pains up my leg, in my bottom and going into my back. She just told me to take Vit D!

    My mind boggles at these doctors

    Thanks everyone,

  • bluebug wrote :

    There are NICE guidelines - cks.nice.org.uk/hypothyroid...

    Even these aren't guidelines. They are "Clinical Knowledge Summaries". Doctors aren't obliged to take any notice.

    There are no guidelines on the treatment of hypothyroidism. Instead, doctors write "statements" as shown by the link LouiseWarvill gave above. If they get pulled up on not following the "guidelines" they can point out that there are none.

    My TSH never got above 6. I felt like death warmed up. Like HarryE above I was left with no choice but to treat myself. I have never regretted it. I care about my quality of life, doctors never do.

  • Sounds like my symptoms you have described 1004sonia, do you know what level your vitamin D is ? and how much vitamin D3 did your Doctor prescribe ?. My Doc only prescribed 1000iu to restore my vitD levels, my body told me it was not enough, I now buy my own D3 at 5000iu and it keeps all pains away, (the 5000iu D3 worked overnight, all my pains just went but if I forget to take my D3 my pains come back that same day.

  • Hi

    I was told to get 2000iu VitD from over the counter as the doctor didn't want to send me for a blood test. I was told to take it once a week and I am on week 2 and my leg pain has almost completely gone. So I assume it was Vit D deficiency that was the problem. I will certainly continue taking it

    thanks

    Sonia

  • Sonia. It is best to take some vitamin K2 with vitamin D and you need your vit d at a much higher dose. The vitamin D council recommend 5000 iu a day to maintain levels. If deficient you need about 10,000. Vitamin Dwill help you feel a bit better but with your TSh your thyroid is struggling. Maybe worth trying to see another doctor at the surgery, the one you saw seems particulary awfull. A lot of doctor will treat thyroid if it exceeds 5.

  • Hi there

    NICE guidelines include for a trial of levo if someone has not reached the magical tsh 10 but has symptoms. There's a link to the specific bit at the bottom of my profile.

    I was given a 'trial' of levo after 7 years of crippling symptoms with a tsh that was around 1.2 but with ft3/ft4 either below the range or sat 0.1 above the bottom of the range. That was 3 years ago and it took around 1.5 to 2 years to get back to normal but this was partly because I have the di02 gene snp and I only started on ndt a year after diagnosis.

    So, I'd suggest printing out the relevant bit of the NICE guidelines, highlighting the bit about symptoms and demanding a trial of levo. It you feel a bit better after 8 weeks (you may feel worse initially but stick with it for the 8 weeks) you can then go back and ask for more

    With me my Tsh, ft3 and ft4 stayed the same at 25 and 50 mcg, when I got to 75 mcg my Tsh went up (!by quite a bit!) with no change to my ft4 and ft3 and it wasn't until I hit 100 mcg that my Tsh came down to below 1 and my ft4 finally got into mid range. My GP explained that the thyroid and pituitary need thyroid hormones to work and so the blip at 75 mcg was probably a sign that things were actually starting to work....

    So just because you're not at the magical 10 does not mean you can't get treated. After the 6.5 years of hell I changed practices and was diagnosed within 5 mins of my first appointment by a GP that had actually read the guidance and understood about secondary hypo (relatively rare) so was not phased by my Tsh being the epitomy of normal. If your current GP won't treat you move, but ask for recommendations (on here or from friends)

    Good luck

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