"good' results?

[CinnamonNutmeg]

Hi

My results since September when I was diagnosed with Hashi's have been

Sep 2023

TSH 22.02 (.35-4.94)

T4 8.8 (9-19.1)

TPO 494 (0-50

so 50mcg of Levo then test

Dec 2023

TSH 8.08 (.35-4.94)

T4 12.8 (9-19.1)

increase to 75mcg Levo

April 2023

TSH 0.51 (0.35-4.94)

They didn't test T4 this time.

All my vitamins, ferritin etc are in normal range

But I don't feel any different ie tired and fat!

I'm 80kg so surely I ought to be on more than 75mcg?

I'm sure the GP won't trial an increase dose with that low TSH. Should I get private tests of T4 and T3? Am i basically stuck at this level of fitness forever . I was so hoping I'd feel the ping of increased energy etc the first doc promised when my levels were right.

Any suggestions you knowledgeable bunch?

[greygoose]

The problem is, they have no idea when your levels are right! They hope to just come across them by chance! They rely entirely on the TSH, believing that it tells them 'all they need to know', when in fact, it tells them next to nothing. And they are happy when it's somewhere within the range - anywhere will do! - because they don't understand about ranges, either.

Your TSH isn't 'low', it's about euthyroid (normal), that's about the level of someone with no thyroid problems, and the top of the range is much, much too high. What's more, hypos need their TSH lower than euthyroid because they need their thyroid hormone levels higher than euthyroid - something doctors just cannot get their heads round! But when you are hypo everything goes topsy-turvy in your body and the 'normal' rules don't apply anymore.

So, we, the patients, have to learn as much as we can about our disease and try to 'educate' our doctors in order to feel well. And if all else fails, self-treat - many of us have given up the struggle and have started to self-treat.

You could get private labs, but I'm not sure how much good it would do you with the GP. For a start, most of them refuse to accept private test results, claiming that they're testing in 'dodgey labs'. Secondly, it would halp you to know your FT4 and FT3 levels and how well you convert, but your GP just wouldn't understand the results - as long as they're in-range, that's ok! Anywhere will do. As I said, they don't understand ranges.

You could try appealing to his better nature: oh, doctor, I feel sooooo much better since I started levo, but there are still one or two little niggles, and I'm sure I would feel even better still on a slightly higher dose - say 12.5 mcg a day? There's still room to increase according to the TSH... etc. etc. etc.

(Although I have to admit my approach has always been 'I want it and I want it now!' It depends on your doctor which approach works best. )

Or, you could go the blackmail route: if you don't give me the increase I want I'll buy my own levo on-line and give myself the increase I need!

But whatever you tactics it sounds like you do need an increase - and not just based on weight, either, that's just another tactic based on NICE guidelines, but it can back-fire. So, keep at it until you succeed. I've often found they'll give me my increase just to get rid of me.

[CinnamonNutmeg in reply to greygoose]

Thanks greygoose. I think I'll get the private tests done so at least I know what they all are and take it from there. I have little confidence in my GP but could see a private endo from the Thyroid UK list to at least feel everything is being taken into account.

I'm sure the saga will continue....

[greygoose in reply to CinnamonNutmeg]

You're welcome.

[Lottyplum in reply to CinnamonNutmeg]

I got my private tests done with Monitor my Health which is an NHS lab that does private ones too. My GP accepted them+I also included when I saw her that Thyroid UK recommended my dose be increased as I still have awful hypo symptoms. It worked as NHS recommend Thyroid UK in their bumph. Don't let them bully you. And if they still refuse, get a speedy referral to a good private Endo on Thyroid UKs list. That's what I did+never looked back. No longer Michelin Woman+recently found my waist again!! It's your body+your life@the end of the day! 🥳

[CinnamonNutmeg in reply to Lottyplum]

thanks! Encouraging post, I was really down about it all after my blood test results but can see a plan now 😃

[Lottyplum in reply to CinnamonNutmeg]

We are all here to help, encourage+learn! Lots of learning! For me, the straw that broke the camel's back was my GP saying T3 is irrelevant! Irrelevant? It's the active thyroid hormone+I was a poor converter (which is what the private blood test of TSH, T4+T3 demonstrated!) Today is a new day! Every day is a new day! Make them count+ensure you enjoy your life, not just endure it! As that advert says, "You're worth it!"🥳🥳