What to say?: Just waiting for docs appointment... - Thyroid UK

Thyroid UK

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What to say?

maisie53
maisie53

Just waiting for docs appointment. Blood test results over the phone TSH 0.05 T4 "normal". Was on 125 feeling well but doc not happy as the TSH was low(?)so reduced to 100. Now I've been called in to discuss as it is still low. I have Hashimoto's. I took my meds after the blood test. I don't want to feel unwell again. Any ideas of what I should say to fight my corner? Also want to discuss persistent cough...anything to do with it?

Thanks for any comments. I will get full results from the doc and of the previous results.

11 Replies

You are only OVER - medicated if the FT3 is over range. As that has not been tested and the FT4 is in range then he has NO case to argue. If he really understood the workings of the thyroid he would /should know TSH testing is of little value.

Coughing ? Have you had B12 tested - check out the Vagus nerve.

maisie53
maisie53 in reply to Marz

Not tested for B12 and know nothing about Vegas nerve so will get reading

Marz
Marz in reply to maisie53

Your B12 needs testing along with Folate - Ferritin and VitD ... B12 is good over 500 - Folate and Ferritin at mid range and VitD over 100.

Gargling stimulates the Vagus nerve !

Hidden
Hidden in reply to maisie53

The vagus nerve controls some essential reflexes and functions of heart, lungs, throat and intestine. Includes the cough reflex which prevents you choking, but if irritated can be a nuisance. Have you had it off and on for a long time (months or years?) and does it happen more when you go to bed? Could be acid reflux in that case. But hypothyroidism could indirectly be the cause of that too!

We must all wish that the doctors were rather less fixated on blood levels and more on how we FEEL. If we feel well on a certain dose of thyroxine that means we ARE well, whatever the TSH!!!

I agree with Marz, he should not be dosing by the TSH. And low TSH does not cause heart and bone problems, as he probably believes. He should keep up to date with his reading!

maisie53
maisie53 in reply to greygoose

Thank you. They have mentioned heart and bones already.

greygoose
greygoose in reply to maisie53

Yes, well, they're wrong. Ask them for proof.

Thank you. Will do. Who do I contact for article please?

SlowDragon
SlowDragonAdministrator in reply to maisie53

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Low vitamins tend to lower TSH, so can high antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

See from previous posts you had extremely low vitamin D. Have you remained on maintenance dose ever since?

maisie53
maisie53 in reply to SlowDragon

Wow, thank you so much for this. Recent vitD test (6 months ago) showed it had increased to 50 which I know is lowest end. Since then I have bought my own so take 1600 not the 800 prescribed. I had high level antibodies having told GP my sister has Hashimoto's. I have previously suffered with an autoimmune condition. My surgery has been helpful but of course you need to ask the right questions and make the right requests. I admit to still being a bit confused as I thought good T4 was what we were aiming for but they seem fixated on the TSH. If myTSH is low doesn't that mean I'm not produce that hormone which tells my body to produce more T4? But if my T4 is 'normal', does it matter? I probably have the wrong end of stick...please explain. I think I grasped these basics at first but have forgotten...sorry not very clear thinking at the moment! Will definitely email Dionne in the morning. I have started taking selenium as I read that might help. I didn't know that low vitamins are common in Hashimoto's. I have an acid stomach...definitely considering private testing. Thank you, thank you!

SlowDragon
SlowDragonAdministrator in reply to maisie53

Most hypothyroid patients have low stomach acid, not high stomach acid.

Very similar symptoms, very different treatment. But if on any PPI like Lansoprazole or omeprazole you must not just stop these.

Low vitamins often connected to a PPI medication too

Low vitamins and/or stomach issues tend to lower conversion

The most important results are FT4 and FT3. But GP very rarely tests FT3

Most patients have to test privately to get FT3 tested

TSH is often suppressed when on adequate Levothyroxine

Links about stomach acid

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Posts on here mentioning low stomach acid

healthunlocked.com/search/p...

Essential to regularly test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's very often affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first just to rule it out.

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

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