Endo seems focused on TSH

[Handsome14]

Evening, so I had my first face to face appointment with Endo today (I have hashimotos and have posted before)

He's literally saying all the things I've read about on this forum - TSH suppressed (0.07 - range 0.27- 4.20), wouldn't want to go much lower as causes heart issues, hypothyroid sufferers seem to blame all symptoms on thyroid, not looking at ft4 (14.8- range 10.8-25.5) or ft3 (4.5 - range 3.1-6.8) results, saying doesn't matter if hashimotos as treated same as hypothyroidism, can't explain why ft4 and ft3 are low end of range.

I'm feeling like he doesn't understand condition but obviously can't quite say that.

We've agreed, after me not letting things go, that depending on what blood test results reveal (had them done this morning before taking meds - I'm currently on 125mcg levo and 10mcg lio) that if ft4 is below 18 (I told him from what I remember in all the ups and downs that I seem to remember feeling well at this level) that he would increase levo but reduce lio.

So I left feeling unsupported and having to fight and persuade for adequate treatment. It makes me doubt myself and wonder if Endo is right and there is something else wrong with me but it does very much feel like the symptoms I had before I was diagnosed when for ages no one knew what was wrong with me.

From my ft4 and ft3 results it is possible to still feel undermedicated, right?

Also, looking back since 2016 when I was first diagnosed there were times when my ft4 and ft3 weren't high up in the reference range but I didn't feel unwell. Is it possible that the same results years ago would not cause symptoms but that those same results now do.

If I'm not getting the support from my Endo what other options do I have. Can anyone recommend an NHS Endo or private doctor who knows what they are doing and willing to ignore TSH levels.

Lastly, is it always necessary to go gluten free and interested to know how many people on here don't follow this diet and are well. I did the AIP back in 2018 but I was feeling well at the time so when I reintroduced food there was no obvious reaction.

Sorry for the lengthy post and looking forward to any help you can give

[SlowDragon Administrator]

Looking at previous posts..can’t see any vitamin results

What are your most recent vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

As you have Dio2 gene variation you might be better with 3 smaller doses T3 at roughly 8 hour intervals …..3 x 2.5mcg for example …..or 2 x 2,5mcg and 1 x 5mcg …

[SlowDragon Administrator]

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Last 2.5mcg T3 approx 8-12 hours before test

Do you always get same brand levothyroxine at each prescription

ft4 (14.8- range 10.8-25.5)

ft3 (4.5 - range 3.1-6.8)

Assuming test was done as recommended

Ft4 is 28% through range

Ft3 is 38% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Obviously everyone is an individual….but many on levothyroxine plus T3 would find these results too low

[Handsome14 in reply to SlowDragon]

Thanks for reply. I agree results are too low and I have symptoms but should I be worried that TSH is suppressed or is it safe to ignore TSH and focus on increasing levo and/or lio.Also if the dosing goes on weight can you take a higher dose than the formula suggests. I will post vitamin levels soon

[JAmanda]

Yes Endo is t going to be any help by the sounds of it. Getting T3 higher in range should help symptoms. My Endo at Kingstonnhospital prescribes T3 as do many across the U.K. or you could self source lio or even more Levo if that works for you to get both t4 and T3 levels up

[Handsome14 in reply to JAmanda]

Thanks.My Endo is at Kingston hospital too and he does prescribe T3 - he gives me 10mcg but he's reluctant to increase levo or lio as my TSH is suppressed. Is he right to focus on TSH and shouldn't he be looking at ft4 and ft3 levels

[Batty1 in reply to Handsome14]

I’ve seen 7 Endo’s in 5 years and every single one of them focused on TSH and basically ignored everything else.

[JAmanda in reply to Batty1]

Yup! They do t worry about the heart so much any more do they? My response to that is my higher T3 has reduced my cholesterol by about 25%. As the danger to my bones, why don’t they offer a bone scan sdo we can see if there’s evidence of that?

[littlecandle]

Both times I have seen an endo, they clearly have no idea about thyroid issues. They both insisted that I should be on less than 100mcg daily, not the 125mcg I am on and have been for most of the last 25 years. My symptoms are now all menopause, not thyroid. Absolutely useless, both times. I'll never go back to one.

[Batty1 in reply to littlecandle]

Menopause and thyroid issues are the perfect storm and Endo’s see no connection.

[Black_puma]

I can vouch for that, my Endo is useless, see my most recent rant, trying to reduce my medication again!