Thyroid UK
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Resistance to thyroid hormone - A bit of a long shot

I've been diagnosed with Hypothyroidism for the past three years but in that time I've never been able to get my levels to balance in that time no matter what level of med's I've taken.

I've gone from 25mg to 150mg three times now.

My Doctor couldn't make sense of it so I was re-referred to my Endo who now thinks I have a antibody resistance to thyroid hormone after a negative test for a pituitary gland tumour.

This means my body may be resistant to Thyroxine so it doesn't work on me.

My bloods have been sent to Birmingham (lucky them) to have the antibodies scrubbed and re-tested so in the time I've tried to look into the condition but I've found very little on the net apart from a few medical case studies that I find difficult to understand.

I just wondered if anyone on here has the same condition?

I know it maybe a long shot as according to one report only 1 in 1.3 million people have it.

My Mum always said I was 'special' but this is taking the p@ss. ;)

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Sorry I can advise/comment but you made me chuckle /lol!..."special '...takes the p@ss!"😂...I reckon if those were the odds/chances of having the winning lottery ticket...you WOULDN'T have it!.😂...on a serious note I hope you get sorted!...

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I really hope I don't have it. The Endo said "You're a very unusual case".

Me: "Oh, thanks" :(

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I've looked at your previous post and I wonder if you were diagnosed with Addisons or do you still have low cortisol. That would interfere with thyroid treatment.

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I've been tested for all sorts of things as my results never make sense. I can't quite remember them all but even as far as testing for a very rare tumour so I'd imagine they's have checked the basics first.

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Can you post most recent results including ranges

Do you have high thyroid antibodies? If these are high this is autoimmune thyroid disease also called Hashimoto's

Have you also had vitamin D, folate, ferritin and B12 tested?

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I've never seen my results apart from on the GP's and Endo's screens. I don't understand them anyway. Just two lines of number that keep swapping from red to green and back. I'm going to try to get a print out next time I see my GP and try to educate myself better. I did get a crude drawing on the back of a form from the Endo but I had to hand that into reception when I made an appointment. It wasn't very good anyway. ;)

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I'm curious to know what you mean about getting your levels to 'balance'. Balance in what way? Are you talking about the T4/T3 ratio? Or keeping the TSH in range whilst still having the Frees high enough to feel well? It's rather a strange turn of phrase.

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I do need to learn more but all I get to see it my test results in two lines on the screen. I'm thinking these are my T4/T3. One is red and one is green and they swap. I'm thinking green is good and red is not so. I swing from hypo to hyper (apparently) and get symptoms of both. Sorry I can't word things better. Both my GP and Endo are very confused. I take my med's like clockwork too. I first went to my GP suffering from chronic fatigue well over ten years ago and was only diagnosed three years ago after moving GP. I feel a bit rude asking for a copy of my results for some reason but I am going to do so in the interests of learning about what I have. Again, sorry for sounding a bit vague and ignorant but I'm totally confused. :(

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OK, I see. They're not being very helpful, are they! However, it's very doubtful the results are T4/T3. More like TSH/FT4. FT3 is rarely tested.

You cannot swing from hypo to hyper. The thyroid doesn't work like that. However, if your doctor is dosing by the TSH, then you will swing from over- to under-medicated. And, the poor dim darlings can never work out why that might be...

Anyway, it is your legal right to have a print-out of your results, every time you have a blood test. It's nothing to do with being rude. But, I don't think doctors realise that. And some of them would prefer you don't know! But, ask for it, anyway. It's a start in understanding what's going on. :)

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Thank you Greygoose. I will and I'll phrase it in the way that I'd like to use them to learn more about the condition. I always never try to insult people who are treating me or making my food. ;) I'm not a 'moaner' by nature but it took me years to get my Hypothyroidism diagnosed. I've also had symptoms of Adrenal Shock (passing out) but these were always discounted.

Thing is, my Endo seems to have really switched up a gear and I'm really thankful of that.

I don't feel like I'm seen as a malingerer any longer.

I'm sure that everyone on here has seen that slight look in a GP's eye?

Maybe it's because we both found out each other were skaters back in the day?

We're like Bro's now. (Almost).

We're not quite at the fist bump stage yet but I feel that may come in time. ;)

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Asking for your test results has nothing to do with being a moaner. It's a perfectly reasonable request. After all, they are YOUR results. :)

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If you are Thyroid Hormone Resistant, only T3 (liothyronine) will be of benefit to you. It doesn't need to be converted as levothyroxine has to and your Endocrinologist should prescribe. Also if resistant, you may need far higher doses to relieve your disabling symptoms.

I shall give you a couple of links by a doctor who was an Adviser to Thyroiduk.org.uk before his untimely death.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

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Thank you Shaws for those links. I'm going to have a read and learn more as I really need to understand better. The Endo described it using his hand and fist. The fist being the receptor and the hand being the thyroid hormone. He thinks my hand is missing my fist if that makes sense. My wife uses makaton to teach her five year old's so I'm not sure what this says about me. ;)

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I am listening to the following videos at present and am on up to Episode 2 so far and it is an eye-opener with regard to dysfunctions of the thyroid gland. Also the poor care many of us get.

thethyroidsecret.com/specia...

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I just wanted to say thanks for your replies and thoughts.

I now know I need to get a copy of my results and do my damnedest to learn and try to understand everything.

Be a bit more proactive!

Also those links turned out to be VERY interesting and I'm going to try to digest all that info.

I've a few weeks until I get my results back and 'hopefully' I should get some answers but I will post what happens.

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BTW. I remembered I'd taken a pic of the test request form.

Some of it was in "Doctors Writing".

Request:

Full thyroid 'interfere' test (scrawled)

LFT (including calcium)

TFT - including FT3 and FT4

Thyroid Antibodies (TPO)

Coeliac Screen (TTG)

TSH Receptor Antibodies

U/E

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so you have had test for Hashimoto's (Hypo that swings up and down) - that's the Thyroid antibodies TPO test

TSH receptor antibodies - is, I think, TSI antibodies for Graves disease

thyroiduk.org/tuk/about_the...

Suggest you ring GP receptionist and ask for copies of test results. It takes a day or two to organise - then pop down and pick them up. They may make nominal charge for paper and ink

You obviously have low vitamins if they are considering Coeliac screen

Most likely you have Hashimoto's - but you can actually have Graves and Hashimoto's

Only 5% are coeliac, but over 80% with hashimoto's have gluten intolerance

Find out what your vitamin D, folate, ferritin and B12 levels are too if they have been tested. You need to know ranges and actual figures

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Will do!

Also thanks for the info as I'm desperately trying to get unto speed with all of this.

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Do have a look at the links shaws gave you, as the late Dr Lowe was an expert on thyroid hormone resistance. His books are out of print, but well worth a read if you can find them. Also worth reading is this ebook overview written by a former member of the TUK forum:

amazon.co.uk/Impaired-Sensi...

I had to have this problem diagnosed privately; I think you're actually quite lucky to have an NHS doctor who has realised what is going on. As said already, you'll need T3, probably at a high dose.

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"A Cause of Heart Disease, Cancer, Autoimmune Conditions, Women’s Health Issues, Strokes, ... Fibromyalgia, Depression and Other Issues"

Oh lovely O_o

Just when I though it couldn't get much better. ;)

Sorry for late reply as I don't get message notifications from this site.

I'll defiantly check that out and I've been doing my best to read through those great links.

Pity that guy isn't around any longer. :(

I'm glad my Endo is pushing this forward and I kind of feel lucky now.

I'm still waiting for the results and getting quite impatient but he told me they may take a while.

My next appointment isn't until Dec 14th so may need to wait until then. :(

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