On going battle

[Ragerty]

Just had my thyroid blood results back

TSH 4.71 range .27-4.2

T4 12 .5 range 10-21

Comment from doctors was they've gone up a bit no further action re test in 3 months time.

After last bloods November which were

TSH 4.17

T4 13.5

And a massive battle I had my levo increased from 50 to 75.

I had my thyroid bloods tested in hospital and the TSH was 1.65 hurrah hurrah hurrah felt better 😀

Feeling really tired and exhausted no energy but thought this was from having a big operation. Decided to have thyroid tested again as about to go through further treatment. And the TSH has risen and the T4 has gone down. I have made an appointment with the nurse (who can't prescribe an increase ) Can't have an appointment with doctor for three weeks (next bookable appointment). Apart from scream, swear and bang my head against a brick wall has anybody any suggestions as to what to say to the nurse tomorrow morning. Thank you as always for your advice x

[tattybogle]

Was comment from doctors just what is written on results ? ( as opposed to something the GP said to you ) it might not have been written by 'your' doctor.Any way .. it doesn't really matter ..

I suggest this :

say in passing to nurse tomorrow that you are "feeling so dreadful with such a high TSH again , that you are going to increase the dose yourself tomorrow to try 100mcg" ...in my experience , that comment will probably result in a phone call from the GP pretty quickly ... i said it on a saturday afternoon to a phlebotomist taking thyroid bloods and got a 9 am sunday morning call from my GP to 'discuss'..... quite efficient i thought

[Ragerty in reply to tattybogle]

Hello I haven't spoken too or seen a doctor can't get a telephone call for 3 weeks. The comments must of been written as the receptionist told me. It's an absolute joke before my operation the hospital checked my thyroid levels and told me I definatley needed an up lift as my T4 was 13.5 and they were happy my TSH was at 1.65 just before my operation .

[crimple]

Ragerty, your GP seriously needs to go back to med school. There is no doubt that your TSH is above the reference range. This is totally unacceptable when you are already on levothyroxine. Your TSH should be around 1. To expect you to got through with further treatment when your TSH is above range is totally unacceptable. I would get in touch with the practice manager and complain about your poor treatment and emphasise how you ended up needing major surgery due to their negligence. Wear your big girl pants🤗

[Ragerty in reply to crimple]

Got them on this morning xx thank you

[Cup-cake7 in reply to Ragerty]

I too just postponed pre op as TSH shot up. Iv had no reply after writing

[Cup-cake7 in reply to crimple]

🤔looked like it was just in range. Story of my life maybe over range had the test been took early without food ? But always STILL the gp /lab range up there. Endos say be under 2, here most have wellness at one

How can this confusion remain on the back of health?

[Ragerty in reply to Cup-cake7]

Hi jeppyYes the test had been done no food and levo last taken day before. Early morning test at 8.10am. I felt so much better when my TSH was 1.65 after been put on 75 and now it's back up to 4.71 and t4 has dropped from 13.5 to 12.5 but that's OK test in 3 months. Not a chance they getting away with that so battle continues. Why do we have to battle with them when all we want is too feel well ???????

[Buddy195 Administrator]

Hi Ragerty,I would cite that those with Hashimotos need a TSH under 2 (and preferably under 1) and yours is now over range and your T4 is right at the bottom of the range. Outline that you are concerned that your health will deteriorate further & how you felt better when your TSH was nearer 1 whilst in hospital . You have already been neglected (with medics failing to realise you had a serious kidney problem) and so are rightfully taking a stand to improve your own health. Say you would like to try increasing by 25mcg in the first instance and if they refuse say you will contact the practice manager re BOTH past treatment for your kidney condition and current apathy towards/ neglect of your thyroid health.

If you feel comfortable doing so, I would also add some further details to your profile/ ‘bio’ so members get a better picture of your ‘thyroid journey’ and kidney issues.

Sending you very best wishes 🦋

[Ragerty in reply to Buddy195]

Thank you xxx

[Charlie-Farley]

All of the above Ragerty but just to let you know I have successfully argued (once literally) for dose increases when within in range. I did this because I was symptomatic and there was slack in the range. I was not over range and argued I could sit higher in the range. So I got on a higher dose of levo, one that was optimal for health not just ticking a box that I was in range (yet ill). See profile.

Good luck 😉

[Ragerty in reply to Charlie-Farley]

Thank you taken crimple advice have got my big girl pants on waiting to speak to nurse . X

[SlowDragon Administrator]

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Request/insist nurse include vitamins in test

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Persevere - have all guidelines printed and be ready to quote them

healthunlocked.com/thyroidu...

[Ragerty in reply to SlowDragon]

Thank you for all the information. Have got an appointment with the oncologist nurse this morning at 10 am and going to discuss this all with her too. The consultant did say that they would keep an eye on my thyroid when I asked if the chemo would effect my levels . If I have to go through the hospital and not the doctors so be it x