Hypo or not? Should I see my gp?

[Redroz1e]

I was diagnosed with hypothyroidism in 2016 and prescribed Levothyroxine. This was gradually increased and although my TSH came down my and my T4s went up my T3 remained low. My GP wrote to an endocrinologist to ask if she could prescribe me T3 however he wrote back saying I wasn’t hypothyroid. Although my GP has continued to prescribe levothyroxine the hypothyroidism has been removed from my online medical record. I began to feel symptoms again towards the end of last year and have waited until now for my annual blood test which I had at the beginning of the week. My TSH has increased but both my T4 and T3 have reduced despite being on 125 MCG. I’ve made an appointment with my GP for next week but I’m not sure whether to keep it if I’m not hypothyroid. Any support welcome. Thank you.

[Jazzw]

I can only guess that the Endo decided that your TSH wasn’t high enough for you to have been diagnosed with hypothyroidism when it reached 4.0. Well, it *was* high enough and it’s been a long time ago. But unfortunately here in the U.K. many doctors seem to believe you’ll get no symptoms until it rises above 10. My other half was bed bound with a TSH of 5.0 so that’s cobblers...

I don’t think I’d want to play Russian Roulette with my health by coming off levothyroxine after so long. You’d probably feel quite ill within a matter of weeks (though confusingly people often feel better to start with - the shock of stopping thyroid hormone replacement makes some ailing thyroids kick back into life temporarily, only to fail rapidly after that).

Often when you can’t get FT3 and FT4 levels up it’s something to do with absorption or conversion. You could try going gluten free - seems to help many. And it’s well worth looking at your vitamin and mineral levels, particularly ferritin, B12, folate and Vit D, all of which are involved in the conversion of T4 to T3 at some point. In hypothyroid folk they’re often low as hypothyroidism reduces stomach acid (and thus absorption of key nutrients).

What happens when you raise your Levo dose? TSH is irrelevant once you’re on levothyroxine - it doesn’t matter if it’s suppressed if FT4 and FT3 are low. As FT4 is low, I’d suggest you’d benefit from an increase in levothyroxine.

[Redroz1e in reply to Jazzw]

Thanks for your reply. I don’t want to stop taking my medication but I’m not sure why the GP is still prescribing it if I’m not hypothyroid. My T3s are only a little over the bottom reading at 4.3 (4-6.8) down from 4.8 last time but she has passed everything as normal as they’re in range. I need to know what to say if I am going to keep my appointment.

[Heloise]

What on earth? Why didn't your gp correct the endo who must not have realized you were taking levo. Normally, once diagnosed, you can't UNdiagnose. Was he saying you should never have been diagnosed at all?

It's very typical as the TSH rises there will not be enough FT4 and FT3 available and it's a message to raise your dose.

I can't make out the dates on that chart, could you just post your latest TSH, T4, and T3 results. I also didn't think you could register a negative TSH as it looks. Was this a blood test?

[Redroz1e in reply to Heloise]

Hi Heloise. Yes, the endo said I shouldn’t have been diagnosed in the first place so my GP said she was no expert but the endo was.

My latest results taken on 7.1.19 are

TSH 3.4 (0.3 - 4.2)

T4 17.6 (12-22)

T3 4.3 (4.0-6.8)

Previous results taken 15.1.18

TSH 0.25

T4 20.7

T3 4.8

Both tests were done under the same conditions ie fasting, no medication and early morning. Any advice as to what to ask my GP? Thanks in anticipation 😊

[Heloise in reply to Redroz1e]

Yes, you need to increase your dose and maybe 25 mcgs would get things straight.

It is a gradual deterioration with autoimmune disease which usually is the real diagnosis. As you start treating it it's bringing back some of those closures so you need to keep increasing until your symptoms of low thyroid are gone. Now if you continue having attacks on your gland which are destroying it, you have to address that. That's why we often recommend stopping either gluten or dairy or maybe both.

This ongoing problem with doctors not recognizing that those ranges are not correct and even the testing without antibody tests makes a good diagnosis impossible. This causes people to languish as you almost did but your GP was smarter than your endo. Your FT3 is too low and if she's reasonable she'll help out. Another failure of the medical system is not realizing when you're metabolism is low it effects your digestion and therefore nutrition. Certain things are vital for your thyroid replacement to work. You need good vitamin D levels as well as ferritin, B12, and folate. Those need to be replenished as you try to heal.

This is a horrendous problem and why so many here have undertaken their own treatment. If you don't get anywhere I urge you to do the same.

[Redroz1e]

Thank you. I will see what she says and continue to supplement. I really wish that it wasn’t such a minefield and we were all able to get the support we need from our GPs.