Finally being referred!!: Bit of background 199... - Thyroid UK

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Finally being referred!!

Louise9683 profile image
12 Replies

Bit of background

1992 had partial thyroid removed.. autoimmune

1992-1996/7 amour thyroxine health was great

1996/7 - 2017 levothyroxine health got worse year on year even though lab test normal.

During this time I tried everything, vegan, keto, gluten free, dairy free, sugar free, paleo, starvation.

Tried every skin care product and vitamin combo..

finally the depression, the fatigue and banging my head against a brick wall and telling my doctor that the Levothyroxine is making me sick

I stopped taking the Levothyroxine. Within 6 months I felt normal...

the past few years have been the best years of my life since I stopped taking Levothyroxine..

I live life to the fullest, I’ve just turned 50 and last year did my first bodybuilding bikini competition.. I exercise 2 hours every day, walk 15k steps, eat well, sleep well, work full time... not a single symptom ..

Finally had a blood test.. apparently I am very, very hypothyroid 100+

Doctor has finally referred me as I have point blanked refused to take Levo.. I never want to be that sick again.

I don’t understand why I feel so well so looking forward to finding out!

I may have been reckless but I want to live a full, energetic, inspired, happy life!

EDIT picture to show how healthy I am

Picture one 2017 pic two 2019 age 50

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Louise9683
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12 Replies
tattybogle profile image
tattybogle

wot .. no thyroid left and no hormone replacement at all ?

Out of interest did they do fT4 (or fT3)tests ?

Seems illogical that you can function at all ....but am pleased to hear you're well.

Louise9683 profile image
Louise9683 in reply totattybogle

Hi

Only t4 test.. my doctor never tests anything else.. basically got told that google was not my doctor she was!

I don’t understand why I feel well that’s why I’m so pleased to be referred..

I don’t take a single vitamin or pain killer..

I will let you know how I get on

X

tattybogle profile image
tattybogle in reply toLouise9683

am curious what fT4 result was... did they remove all of your thyroid or just some ?

Louise9683 profile image
Louise9683 in reply totattybogle

Some thyroid removed

Doctor just said my TSH was over 100 and I need to take my medication..

I will try and get a copy of my results..

tattybogle profile image
tattybogle in reply toLouise9683

Ah ok. if some thyroid remaining ,that makes more sense.

Yes , get hold of actual fT4 (and hopefully fT3) results with lab ranges, should be interesting to see what's going on, and may explain why you still feek ok if T3 is good,

Sometimes body prioritises T3 production and conversion from T4 when thyroid is struggling.

Thyroid is obviously struggling, hence TSH 100, But T3 is the thing that keeps everything working for as long as it can.

SlowDragon profile image
SlowDragonAdministrator in reply toLouise9683

Presumably you take some body building supplements ?

Louise9683 profile image
Louise9683 in reply toSlowDragon

Hi

I don’t take any supplements, no vitamins not even pain killers.

I had total thyroidectomy in 2005 and voluntarily chose to have Radioactive Iodine (RAI) treatment. Taking Levothyroxine left me feeling quite ill. Taking no Levothyroxine left me feeling desperately ill

What we need to know is whether you have had RAI.

If not then it seems likely that any remnants of the thyroid that the surgeon was unable to remove have regenerated themselves to create a functioning thyroid gland, meaning you don't need to have any thyroid medication at all. You are indeed vey fortunate if this is true, it would be a genuine miracle.

Either that or your thyroid operation merely removed only part of your thyroid.

It would be very interesting to me and others which of these alternatives is true.

Louise9683 profile image
Louise9683 in reply to

Hi

I had partial thyroidectomy, I’ve never had RAI

Only Amour for the first few years then onto Levothyroxine but it kept me sick for years!

I really don’t understand hopefully I will get some answers

I will definitely let you know how I get on with the endo x

shaws profile image
shawsAdministrator

The thyroid hormones enable our whole body to function. From Head to Toe: Our heart and brain have the most T3 receptor cells and the usual TSH to be healthy and body to function as normal is a TSH of around 1.

If you have a TSH of 100 you must have another blood test and this is the procedure to follow:-

The earliest possible appointment - fasting (you can drink water) and if you were taking thyroid hormone replacements you'd allow a gap of 24 hours between the last dose and the test and take afterwards.

Request a print-out of your results, post the results and the ranges (ranges are figures in brackets) for members to comment upon them.

Also request the doctor to test B12, Vit D, iron, ferritin and folate at the same time.

Has your doctor given you the results for yourself or has it got mixed up with another patient?

This is an extract from the following link:-

"

I don't know why the 'experts' are so hard-hearted that our clinical symptoms are assumed to be due to something other than a dysfunctional thyroid gland. In fact the experts are ignorant in these 'modern' times'. Just as new mothers are aware that their infant isn't well and go by symptoms and a change in the child's behaviour, why cannot doctors/endocrinologists?

We make an appointment with GP and they surely should have basic knowledge about all things common.

This is an excerpt from the following link:

"There are self-limited thyroid disorders, such as post-partum thyroiditis and subacute thyroiditis, where no therapy is necessary after the disorder runs its course (see Thyroiditis brochure). However, post-partum thyroiditis frequently recurs with subsequent pregnancies."

thyroid.org/patient-thyroid...

Louise9683 profile image
Louise9683 in reply toshaws

Thank you I will follow this on my next blood test x

Batty1 profile image
Batty1

Im jealous.... I looked like that 4 yrs ago now I look like Im channeling the stay puff marshmallow man... being hypo and having idiot Endos suck.

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