Another battle

[Xmrkn20]

Just back from GP, having won another battle to get my Levo increased. It is so tiring feeling that I am really pushing to be given drugs. Conversation went like this:

Me: my symptoms have worsened so I did a private blood test, the results show that my FT43 and FT4 have lowered and my TSH has increased which makes me think a small dose increase would be beneficial.

GP: your results are in the normal range. Our guidelines say that we should not increase dosage when the results are normal.

Me: My results are often in the normal range - I have put the percentages on my notes so you can see that the FT3 and FT4 are in the low part of the range; I believe they should be higher than this.

GP: where did you hear this? Did you get this online?

At this point, I went into the shoe-size analogy about ‘normal’ ranges, again she asked if I heard that online. She then noted that the ranges used by NHS and the private test centre were different and suggested that had added confusion ( that was why I had included % through range!).

Credit to her, she did eventually agree to increase my dose by 12.5 but was still stressing that if (and when!) that made no difference to my symptoms I must go back. The inference being, it’s something else, not your thyroid because your thyroid results are normal.

I dread going there, yet know that it can take a long time to get the dose right so more visits are almost bound to be needed. I just so wish it wasn’t such a battle.

Thanks to all the advice and guidance here I have learned to stick to my guns, however awkward it might feel. I advise anyone who is new to this (as I was at the beginning of the year) to heed the advice on this forum and go armed to your GP just I case they are not as well informed!

[ockerdoc]

The GP situation in this country is dire..mine wouldn’t increase from 25mcg to 50mcg so I bought my own and took charge of my own therapy. They are so hung up on numbers and ranges without taking into account how the patient feels. I dread to think how many patients are under medicated and just accept it because the GP tells them they are within normal ranges. It’s absolute madness.

[Doris11]

Why don’t GPs believe what we say ☹️ it feels like gaslighting ☹️ we are informed patients but get made to feel like we are making it all up and it’s all in our heads ☹️ it’s so frustrating 🤬 I’ve had two Drs tell me my results are normal or I’m over medicated ( I’ve also have private tests from medichecks) and the reaction was are their machines calibrated and we don’t use Active B12 🙈🙈 although NICE guidelines suggest Active B12 is more accurate! Good luck and sorry for my rant ❤️

[FancyPants54 in reply to Doris11]

If you do another test yourself, use Monitor My Health. That's an actual NHS lab in Exeter! They can't argue the calibrated nonsense with you then.

[Doris11 in reply to FancyPants54]

Thank you 🙏

[Xmrkn20 in reply to Doris11]

Sorry you've had such a frustrating time. I used Monitor my Health but she thought that the different ranges had "confused me"!

[FancyPants54 in reply to Xmrkn20]

They really don't take us seriously do they?! My GP surgery sends bloods off to 2 different labs. Both of those labs have different reference ranges. You have to be so careful to look out for traps.

[Doris11 in reply to Xmrkn20]

Sorry if I hijacked your post 😞😞

[Girlneedsanswers]

There’s a range on blood markers for a reason and not all of us feel good just being in range - we need to be in OUR zone on the range to feel better. I have a difficult time with the attitudes of doctors; they are not experiencing our symptoms. Kudos for standing up and letting your voice be heard.

[Doris11 in reply to Girlneedsanswers]

Thank you I’ve been with the practise over 20 years now and I’m just fed up at not being heard! I forgot to say optimal 🙈🙈 that’s the word 🥰 I don’t know how but I’ve bagged an appointment with my GP (usually have to wait a month) as she’s now part time 🙈 we have a good relationship and she is also one of the partners! I will talk to her about how I was treated! As I have now read some notes on my consultations and there not great! I.E she read something off the internet! Yes it was the NICE guidelines🙈🙈🙈🙈…

[FancyPants54 in reply to Doris11]

Naughty patient using Google to read the NICE Guidelines!

[Doris11 in reply to FancyPants54]

😂😂😂😂

[Xmrkn20 in reply to Girlneedsanswers]

I agree Girlneedsanswers . I tried to explain this using the fab shoe size analogy (ie if you gave me a size 4 shoe it would not fit me) but she just asked if I got that online 😖

[StanleyThyroid]

Yes just had the same situation when I was on 150 but my T4 went above range and got dropped to 100. Symptoms returned and only because my TSH had gone up again did I manage to get back to 125. Now waiting 8 weeks for another "meaningful" TSH blood test but I will redo my private test at that time. It's also hard trying to get the same brand and having the same conversation over and over again. It's very wearing.

[humanbean in reply to StanleyThyroid]

This is something that is often reported - doctors drop doses massively when they should be using a teaspoon rather than a trowel. Dropping your dose by 33% was outrageous.

[StanleyThyroid in reply to humanbean]

Well when I mistakenly double dosed for 6 weeks at 200 instead of 100 she wanted to drop me back to 75!

[humanbean in reply to StanleyThyroid]

Unbelievable!

[Doris11 in reply to StanleyThyroid]

Nightmare 🙈

[helvella Administrator Thyroid UK]

You obviously very much understand these things, but maybe your GP could do with a reminder:

This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.

The normal range: it is not normal and it is not a range

helvella.blogspot.com/p/the...

[Doris11 in reply to helvella]

Wow very helpful ❤️ I shall print this and send it to said practise thank you 🙏

[Xmrkn20 in reply to helvella]

Thanks Helvella, as ever a great font of knowledge. Will take this to my next visit!

[san_ray70]

I was diagnosed with Under active thyroid 18 years ago, at first it was blood test and trial doses. Since the doctor sorted my dose I take 125mcg. every morning, I have not had any problems so far. I get a blood test once a year. So far I have kept to the same dose with no bad side effects. I hear friends say they have problems changing doses etc. I am ok and apart from rheumatism, I feel ok. I hope you get your correct prescription soon.

[Doris11 in reply to san_ray70]

Thank you 🙏

[Bearo]

After my annual blood test the GP reduced my dose telling me by text message. I did six weeks on the lower dose but wrote a letter stating that I wanted the higher dose reinstated. This got me a face to face appointment with a locum . I told him I got lots of helpful information from Thyroid Uk (without mentioning the forum) and he wrote that in my notes, then wrote me a prescription for my reinstated dose.