Help! Levo Levels changing!

[LexxiiB]

Hi All,

I wonder if you could help me.

I have been Hypothyroid for four years now, and have never got in control of the levels. After taking a private test I confirmed that I am a Hashi sufferer. I also received amazing feedback from the members here who helped me to supplement my folate / ferritin / vit d / B12 etc.

However, I started to feel down again in September 2017, where I was tested and T4 had raised to 18.5 (19 being the max of the range), so the doctor dropped me from 125mcg Levo to 100mcg. I have this past couple of weeks developed again a gritty voice, and a sensation of choking / blocking in my throat, which I assume is my thyroid working very hard. My weight has also started to creep back up - after losing 3 stone two years ago once I was diagnosed and treatment began.

I suspect I am falling into the depths of hypo again, and have booked a NHS T4 / THS test for tomrorow morning. I will also be requesting a test privately to check all my levels of vits again, and will post it all here. However in the meantime, my question is:

Should I try to convince my doctor to leave my prescription at the higher end of the levo (125kcg) and that I will manage the levels myself based on how I feel? The whole process of getting a blood test, then waiting and getting to talk to my doctor (who only works on a monday) is long and draining, and a nightmare to manage with working full time and a busy lifestyle.... I just want to find a better way to manage this rather than never feeling / being settled. I understand that with Hashi's thats difficult... I guess that I am asking too much....?

I would really like to be able to blood test myself and then take the T4 based on what I know instead of having to fight to see a doctor and work it into a busy schedule. I know Im asking a lot there - some T3 would be nice too but hey that is asking for a miracle - so maybe we just won't go there!

Any advice on what to say tto the healthcare proffessionals woudl be gratfully received!

Thanks all x

[bantam12]

Your dose didn't need reducing, it was good were it was, stupid doctor ! Do you have T3 results ? that is more important than TSH and T4.

[LexxiiB in reply to bantam12]

T3 was 4 (range 3.1-6.8)

[bantam12 in reply to LexxiiB]

T3 is low so even more proof your dose should never have been lowered.

[greygoose]

You obviously have a very ignorant doctor, so I doubt there's very much you can say to him that he will understand. He should not have reduced your dose! Yes, you need to tell him you want your old dose back - it was obviously the wrong thing to do, because you feel so bad with the reduction. And, next time, refuse to agree to a reduction in dose unless he tests the FT3 and sees that that is over-range.

But, I very much doubt he will allow you to do your own dosing. Doctors in general think patients are too stupid to do a thing like that without their devine intervention.

What's your TSH, by the way? With Hashi's, it's best to have a suppressed TSH.

[LexxiiB in reply to greygoose]

Thankyou for replying. In Feb 2018 it was 0.358 (range 0.27-4.2), will be interesting to see what tmrw brings!

[greygoose in reply to LexxiiB]

You're welcome.

[SlowDragon Administrator]

Are you on strictly gluten free diet as you have Hashimoto's?

Your FT3 was far too low before dose was reduced, no doubt even lower now.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

[LexxiiB in reply to SlowDragon]

Thankyou for that information.

I did try a gluten free but just found it totally and utterly miserable 😭

Maybe I will have to revisit again, I have read of the benefits, I just hoped I could feel better without giving up gluten!