anyone here completely off dairy? could it be something that simple?

[MayGodBlessYou]

i just think the zole is making me extra tired / creaking ...i should just give it a go but i love milk,

maybe i could have less of it ...

it's been years since i desisted for a few days.

[pennyannie]

Nothing is that simply especially when it comes to thyroid function and having an AI disease that likes to play football with this and other glands and organs within the body.

Your tiredness could be all manner of things as the thyroid is the regulator of your health, well being and metabolism and I'm not sure of your treatment plan, diagnosis or phase of current ill health.

Many people feel improved having switched from gluten, dairy, wheat and ultra processed foods, maybe get checked out for food allergies prior to switching - you might get some clues - and remember you may then need to incorporate supplements for those ' lost ' vitamins and minerals you were ingesting.

I think Dr Izabella Wentz writes in some detail on food intolerance and building back one's gut health :

thyroidpharmacist.com

[MayGodBlessYou in reply to pennyannie]

thanks, you're helpful 😊 i've been on approx 5mg carbimazole a day for over a year,

and previously i have done the same like every 5 years or so, for 15 years.

first picked up on by great g.p,

but was overprescribed by specialist with approx 20mg/d for 3mth.

went from ft4 of 31 to 9,

then was keep on 15mg/d for another 2mth and went from ft4 of 9 to 6.

(range 10 - 20)

and tsh 60,

i felt memorably terrible.

i moved towns.

10 years ago endo wanted to nuke my thyroid, like no thyroid, no more problems.

no, i kept it. thank God.

no judgement at all on anyone who's had theirs removed,

great if it helps!

my aunt had something like half of hers removed decades ago, by surgery, and it's going great.

anyway,

if there was treatment for pituitary function, i wonder if that would be treating at the source.

in this past year had ft4 of 42,

my g.p is pretty good, knows more than endo, i would say.

last labs were 12 (6mo ago), then 15 (3mo ago), i find out current number today.

best wishes everyone

[MayGodBlessYou in reply to MayGodBlessYou]

also, a blood aunt had r.a.i decades ago, and she is fine

[pennyannie]

To be talking RAI thyroid ablation I'm guessing your diagnosis Graves Disease - for which there is a generally a genetic pre-disposition which also rings true in your case.

This is an Auto Immune disease for which there is no cure and by burning the thyroid out with RAI ablation or having a thyroidectomy simply removes the target of the AI attack - which is not the cause of the problem - but the victim in all this.

You still have Graves but then primary thyroid and having to take tablets for the rest of your life which may or may not resolve the symptoms of hypothyroidism.

True with the thyroid removed your ' hyperthyoidism ' likely resolved but living without this major gland is a challenge and the treatment for hypothyroidism equally disabling for many.

Many people stay on the AT drugs for very many years and when ' life stressors ' upset their body and sense a return of their thyroid issue simply take the AT drug to help get them over /through whatever has upset their immune system response and with Graves likely causes are stress and anxiety.

I have Graves and in a state of shock diagnosed Graves and had RAI thyroid ablation the following year - my only new symptom was insomnia and I've never been hyper but hypo - but only learnt all this 10 years after RAI when more ill and started researching stuff for myself. There are details on my profile page - if interested - press the icon alongside my name.

Just wish I had your doctor back in 2004 !!

We do now have some research :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

The most well rounded of all I researched is that of Elaine Moore's books and now website -

elaine-moore.com -

Elaine is Stateside and also runs a forum much like this UK based one - so the other side of the World for you - is there anything like this forum in Australia or any group support system in place ?

P.S. As for your blood tests - I would suggest since you seem to have been using the Anti Thyroid drug on several occasions - try and maintain your T3 and T4 readings at around mid point in the ranges - and since the AT drug slows metabolism one knock on effect of this is that your body may struggle to extract key nutrients through food - no matter how clean and well you eat - and non optimal levels of ferritin, folate, B12 and vitamin D can compound your ill health further than necessary.

[MayGodBlessYou]

you are going through much, and now helping others.

i'll keep tabs on my vitamins, i take some but i can be slack.

my ft4 is currently 16,

so, in the past 6 months on 26.25mg carbimazole per week,

i.e 3/4 of a 5mg tablet per day,

i have gone from 12 to 16. (range 10-20)

TSH is <0.01

i feel the tablets are causing some (additional) fatigue.

so i want to take bare minimum.

dr said he prefers if i was in the lower range.

i don't think that feels great.

so anyway i asked then, to keep at this level, could i take 5.5 tablets per week. dr said ok.

there has been comment here that it's better to keep in the higher part of the range. that'd work for me...

i guess i always want to have minimal medication so that if when it remits, the tablets won't slam me into hypo .. haha, it hasn't happened yet..

i will might get another lab done in 4 months. feel as though my ft4 is lower than it is - sluggish on top of chronic fatigue - but also a bit of tiredness in my bones that i feel is from the carbimazole. not sure. still, good to know that i'm in range (though climbing slightly).

my main question now would be, stay level?, or tamp down?

i think i can only deal with staying at this level though

[MayGodBlessYou in reply to MayGodBlessYou]

must say i'm really liking 70bpm heart rate rather than many recent months of 90+

[pennyannie in reply to MayGodBlessYou]

All the AT drug does is to try and keep you on an even keel -

but if your Graves is raging - you'll likely feel an increased heart rate and/or other uncomfortable symptoms - i

We are looking at an auto immune disease that has taken hold of your thyroid to play football with - all the AT drug does is to try and offset the worst of the symptoms being tolerated -

You might prefer a Beta Blocker for these heart symptoms ?

we are looking at an immune system malfunction - for which mainstream medical have no answers - but an AT drug - until such time as your immune system response calms back down again by itself and hopefully your thyroid revert to ' normal ' function without the need for any drugs.

As the AI disease remits - the AT drug should be titrated down - so that you don't land in hypo territory - which is the lower end of the ranges - so try and keep your T4 up the range - where is is now at around 60% :

All the AT drug is buy you time while we wait for your immune system to calm back down again - you are doing well :

[MayGodBlessYou in reply to pennyannie]

yes, very disinterested in going hypo..! (which was from over-medication); also concerned about it bolting as well,

ft4 has been near level for 6 months so, though slight increase;

do you think it's going to stay kind of stable, and not run away?

[pennyannie in reply to MayGodBlessYou]

Well - how long have you been diagnosed Graves and been on the AT drug ?

If you are well / reasonably ok / on the AT drug - I think the research papers I sent you previously suggest that the longer the patient stays on the AT drug the better the longer term outlook for the patient - and details a decreasing relapse rate rise as the numbers of years on the AT drug increases.

After all we are looking at an AI disease - for which there is no cure - and it is a poorly understood AI disease as no 2 people's journey with Graves will be the same - though stress and anxiety tend to be common triggers - with diagnosis for some at puberty, child birth or menopause - mine was diagnosed a couple of months after being physically threatened and verbally abused by a man I employed as my assistant manager !!

Anyway - I guess you could have the Graves antibody rerun - and see if you are now under the range :

[MayGodBlessYou in reply to pennyannie]

yes i was happy to read of the probable long term safety; this changes how i will be viewing the tablets now, as i always want to take minimal amounts of drugs;

i am now relatively happy to take them, and take them for however long!

i have been attributing extra exhaustion to the tablets (and ft4 level), so wanted off, but now that it's been said that being hyper is worse than any tablet harm, the choice is easy.

this round i have been on the 'azole for over a year.

i just read about taking the 'azole with vitamin c. may as well.

stress and abuse are terrible;

especially of the type like betrayal by your assistant manager.

i could say that my hyper diagnosis has followed events of shocks, grief, my anger, overexertion.

also don't underestimate the trauma in near-misses.

i have had massive near-miss, but i'll cite another example;

i met a copper in a small town, was assigned to light duties after a crim pointed a shotgun at his head,

i think the crim pulled the trigger and it didn't go off,

so the copper was basically damaged goods,

i didn't understand how much,

i thought the outcome was good,

but no, what-could've-happened has its own set of severe upset and damage.

let us be healed

[pennyannie in reply to MayGodBlessYou]

When metabolism is running fast as in hyper-thyroid - or slow as in hypo - thyroid the body struggles to extract key nutrients through food - no matter how well and clean you eat - and non optimal levels of ferrtin, folate, B12 and vitamin D can compound your ill health further than necessary.

Maybe get these run - and look to be a good 50% through any range - some ranges in the UK are too wide to even be sensible - so if in doubt -

if you care to share any results and ranges we can advise you :

[MayGodBlessYou]

i'm in australia. reading of u.k and u.s health care systems, it makes me feel more appreciative of how accessible and affordable doctors and drugs are here. i had no idea.