Living with my symptoms: Hi New member here, I... - Thyroid UK

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Living with my symptoms

Jazzgrl profile image
5 Replies

Hi

New member here, I have Hashimotos diagnosed 2011. GP has argued with me over this and cut appointments short when I ask her about raised antibodies and why I have them. Went to endo appointment today to be told by endo that he didn't care if I felt better on T3 and that I am to live with my symptoms of hypothyroid which are crippling tiredness, joint pain, pins and needles in feet, upset bowels, headaches, breathlessness. Is this likely how it's going to be for me from now on?

Thankyou

(OCT 2017)

TSH 5.3 (0.2 - 4.2)

FREE T4 13.6 (12 - 22)

FREE T3 3.0 (3.1 - 6.8)

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Jazzgrl profile image
Jazzgrl
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5 Replies
SeasideSusie profile image
SeasideSusieRemembering

Hi Jazzgrl and welcome to the forum, which is full of caring people unlike your GP and endo.

Went to endo appointment today to be told by endo that he didn't care if I felt better on T3 and that I am to live with my symptoms of hypothyroid which are crippling tiredness, joint pain, pins and needles in feet, upset bowels, headaches, breathlessness.

OMG, that is just awful, what has happened to 'the caring profession'.

GP has argued with me over this and cut appointments short when I ask her about raised antibodies and why I have them

And there she shows her ignorance, she doesn't understand, she hasn't got an answer, so instead of admitting this she wont discuss it.

**

So, what can we do? Let's start with your latest results

TSH 5.3 (0.2 - 4.2)

FREE T4 13.6 (12 - 22)

FREE T3 3.0 (3.1 - 6.8)

You are undermedicated and you need a dose increase of 25mcg immediately, followed by a retest in 6-8 weeks and another increase of 25mcg, and repeat, and repeat until you feel well.

Can you see another GP? Whoever you see, to support your request for an increase use this information and tell them that you have been in touch with NHS Choices recommended source of information for thyroid disorders (which is ThyroidUK - but don't mention the internet or forum). From thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft 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 article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

If you get nowhere with your current surgery I would consider finding another practice.

**

What about your Hashi's? Have you done any research and are you addressing it?

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Read and learn so you can help yourself, you already know that your doctors don't understand it.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

**

Hashi's and gut/absorption problems go hand in hand and very often low nutrient levels are the result and these bring their own problems and symptoms - these in particular joint: pain, pins and needles in feet. Have you had vitamins and minerals tested? If so please post the results with reference ranges, say if you are supplementing, with what and the dose. If not you need the following done

Vit D

B12

Folate

Ferritin

If the surgery wont do them we can advise about labs who do tests you can carry out at home.

Jazzgrl profile image
Jazzgrl in reply toSeasideSusie

Thank you currently gluten free for the Hashis. Vitamins and minerals tested. No idea what to do about them

SeasideSusie profile image
SeasideSusieRemembering in reply toJazzgrl

"Vitamins and minerals tested. No idea what to do about them"

Post the results as requested above

If so please post the results with reference ranges, say if you are supplementing, with what and the dose.

and comment can be made.

shaws profile image
shawsAdministrator in reply toJazzgrl

Antibodies should reduce as you are already gluten-free.

Ask the surgery for a print-out of your results with the ranges and post on a new question.

shaws profile image
shawsAdministrator

This is a link on breathlessness and it could be that you are resistant in some way to T4 (levothyroxine) and you need a Free T3 and Free T4 test as that gives a bigger picture on how you are absorbing thyroid hormones. Levothyroxine is inactive and has to convert to T3 which is the only Active hormone required in all of our receptor cells.

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

Your FT3 is below range - should be nearer 6. FT4 nearer the bottom of the range than the top.

You are on insufficient thyroid hormones as proven by the high TSH which should be 1 or lower.

Also all blood tests for thyroid hormones have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards.

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