A lesson learnt, Long post

[Guest guest]

Hi All

It's a while since I was following this group and even longer sonce I

posted, I was doing well and getting on with

life, time for e-mails had diminished and I dropped back for a while.

T3 only was suiting me but I needed a lot of it.

Across the autumn I started feeling " not right " and blaming it on an

infection. The main symptom was dizziness after laying down for a

while, the Drs didn't have anything useful to say apart from " it's

probably a virus affecting your inner ear, take these tablets to

relieve the symptoms but they won't make it get better any quicker " . I

checked the tablets and they affected the brain dopamine levels so no

thanks, I won't take them!

I got used to coping with the dizzyness, sit on the edge of the bed

for a minute after sitting up and I was fine.

I then started getting breathless very easily with exertion, the

normal things I do each day in the winter feeding horses became harder

and I needed to stop for breath more and more each day.

It was strange, I could get the air in and out of my lungs without any

problem, I just didn't seem to get any benefit from it,

I tried the usual " increase or decrease thyroid " and " increase or

decrease adrenal support " and nothing happened.

My T3 requirement was strange, I needed more than most people, that

need seemed to increase with time as well as though resistance was

building up despite being on T3 only.

I was laying in bed one night feeling like I couldn't get enough

oxygen in my blood stream despite being able to breath freely and in

desperation went to the Drs the next day.

I had a theory which they scorned and proceeded to do ECG, listen to

heart and breathing, and take several vials of blood.

My theory is that it may be extremely low iron, I haven't had iron

tested at any stage of my 12 year thyroid journey (it wasn't talked

about when I started), hadn't had it tested since I was a child in

fact. I had assumed that it was OK as I didn't get any intolerance

symptoms to large amounts of Armour originally and T3 for the last 4

years. I said to the nurse that was running the tests I thought it was

low iron and asked them to check for it. She looked at the whites of

my eyes and said iron was ok!

As soon as I had the blood drawn I got some iron and Vit C on the

principal that if I was wrong and I didn't need iron I wouldn't be

able to overdose on it by the time I got the results back and started

supplementing iron as per the RT3 site.

After a few days I thought I might be feeling a little better, I had

to take less breaks for breath doing things. It was very gradual and

subtle but it seemed to be happening day by day. I was feeling less

dizzy too.

Christmas was in between the Dr visit and the labs returning so I had

a few days without knowing results.

As those of you who know me realise I had given up with Drs for

thyroid and they were unaware that I was on T3 so when they did a

thyroid test (without telling me) they panicked about the results

rather (I had taken 50mcg of T3 an hour before the blood draw plus was

on a lot anyway) and I had a rather interesting phone call from them!

I didn't get any iron results in that call and they said they would be

back later. They " suggested I came in to discuss thyroid matters " when

I said I was self treating.

Between the summons and the appointment I had a very interesting thing

happen, I had a " slow motion " thyroid dump, the T3 pooling in my blood

from taking though to get through despite the resistance started

getting through to my cells and I stopped taking any T3 for nearly a

week without missing it, I wasn't hyper, it released at the rate I

needed it and after a week I felt the lack and started low again.

In the midst of this process the appointment came along with me

feeling a lot better and I went but left 30 mins after my appointment

time with still more people in front of me, I didn't feel like waiting

any longer, it was tea time and I was hungry so I went home, the Dr

has since phoned and I have another appointment. Since then I have

carried on with the iron and T3 as needed and feel a LOT better, back

to how I was soon after clearance.

I am interested to see if I settle on a " normal T3 dose " as the long

standing resistance may have been iron related. Only time will tell,

watch this space and I'll let you know.

I spoke to the Dr making the new appointment and it seems that there

are no iron results, they either didn't test or the results got lost!

I have no starting labs to tell me how low the iron was.

I am planning to carry on with the iron at 160 a day for a couple of

months, stop for a week, and get labs then.

I am still in the " release stage " of the thyroid dump but it's

possible that I will settle on a " normal " T3 dose this time and that

my residual (and increasing) resistance was due to incredibly low iron

that was giving no symptoms of thyroid intolerance. It's only when I

had so little iron I couldn't function that it announced it's

presence.

I'm ramping up in T3 and it seems I have a " normal sensitivity " to it

at the moment instead of resistance, how long for time will tell.

I have another Dr appointment tomorrow for a discussion about thyroid

resistance, iron, T3 etc and it will be interesting to see the

outcome. I might even be able to get the Dr on board, they did a T3

test unasked and that is a miracle for the UK so there is hope for

them yet.

I gave him a written " potted history " of my thyroid journey and have

asked him to read it before the appointment as it will save time.

The moral of this story is that it is essential that you all keep an

eye on the iron levels, they can sink alarmingly low with no symptoms

other than thyroid hormone " not getting through " . Assuming they are OK

just because things seem right and there are no intolerance symptoms

is not enough. I was bitten by something that I knew was important and

hadn't checked in myself.

Drs seem slack iron in the UK, even when I appeared describing

classical low iron symptoms and asked for iron tests they failed to so

them. I would be in a terrible mess by now if I hadn't tried

supplementing and followed the procedures that this group suggested.

For those in the UK that want to get hold of an equivalent to the

Bluebonnet " Solgar gentle iron " is available from a seller on Ebay in

the UK.

I hope this saga helps someone, I've written it up in the hopes that

it might ring a bell with someone else and save them going through

what I have. If you find yourself needing more T3 every few months

check those iron levels.

I'll let you all know how things settle down but at the moment things

are looking good with more energy and stamina as time goes by and

needing less T3.

I wrote that a couple of days ago.

Post continued after Dr visit

Just back from the Drs, he is one to keep!

He understood the idea of thyroid resistance

He accepted that lab reference ranges were skewed.

He had heard of RT3 but didn't know much about it

He had patients on Armour until stocks became hard to get

He had no problem with me self medcating T3

He offered me whatever labs I wanted

He asked if I wanted more labs now which I declined on the basis that

doses and levels were changing. He was fine with me letting my T3 dose

and iron levels settle down and testing in a couple of months when

things have stabilised

A very positive experience from a UK GP

If anyone is in the Verwood area I can recommend him,

Nick