Auto-immune thyroiditis/Hashimoto’s; Thyroxine ... - Thyroid UK

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Auto-immune thyroiditis/Hashimoto’s; Thyroxine reduced 125 to 100mcg 23/7/21 - now test shows TSH swung from 0.01 to 8.25 now. Surprising?

19 Replies

Diagnosed w/hypothyroidism in 2003 :-)but just had anti TPO/TG antibodies confirmed last month (accidentally - the lab did the wrong tests!)

So, back in 7/2021, my GP dropped my Thyroxine from 125mcg to 100mcg, as my TSH was 0.01. It had risen to 0.9 by 22/9/2021 but, as of 28/2, it is now 8.25 :-). Which was a surprise. Anyone have thoughts on why this might be?

FT4 is 16.6, was 13.8 in September.

Thanks for reading!

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19 Replies
greygoose profile image
greygoose

Not surprising at all. Levels fluctuate a lot with Hashi's. And, you are now on the TSH seesaw! TSH drops, doctor drops dose, TSH rises, doctor increases dose, TSH drops, etc. etc. for all eternity! And they are too dumb to recognise the pattern! Dosing by TSH is wrong. The most important number is the FT3, and they don't even test that. Even so, if he bothers to test the FT4, he should at least look at it and have the nouse to realise that if it isn't over-range, then you aren't over-medicated. Simple, plain common sense.

in reply togreygoose

I feel like, now I realise it’s Hashimoto’s, this at least makes more sense :-)) Forewarned is forearmed I guess! I have a phone consultation w/GP next week, so hopefully she will, at least, increase the dose. May I ask, ought I to have my thyroid physically examined for goitre? Just curious :-)

greygoose profile image
greygoose in reply to

Well, even if you have one, there's not much anyone can do about it. If you don't have a visible goitre, then you probably have Ord's, rather than Hashi's - the antibodies and the end results are the same. And, as they know you have raised antibodies, as I see it, the only reason to insist on checking for a goitre is if you think there's one obstructing your breathing/swallowing. In which case, they would have to remove the whole thyroid.

in reply togreygoose

Thank you for both of these, very helpful replies. Much appreciated!

greygoose profile image
greygoose in reply to

You're very welcome. :)

Gatun profile image
Gatun in reply to

Recommend you visit parathyroid.com/Dr.Norman.htm, there's loads of information on thyroid issues/ exams/procedures. This is a top thyroid operation/research facility that can provide information to answer your questions and concerns. Best to you.

bantam12 profile image
bantam12 in reply toGatun

Parathyroid.com is a site dealing with Parathyroid disease which has no connection with thyroid disease despite similar name.

Gatun profile image
Gatun in reply tobantam12

Whoops....sorry.

SlowDragon profile image
SlowDragonAdministrator

Request GP test vitamin D, folate, ferritin and B12

Plus coeliac blood test if not already tested

Arkenstone profile image
Arkenstone in reply toSlowDragon

Why we need to test for ferritin? Could you advise? An Endo asked me why I asked for Ferritin levels test.

SlowDragon profile image
SlowDragonAdministrator in reply toArkenstone

Low iron/ferritin is extremely common when hypothyroid

An article that explains why Low ferritin and low thyroid levels are often linked

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Medichecks iron panel test

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Why low ferritin needs improving

healthunlocked.com/thyroidu...

Iron/ferritin and restless legs

healthunlocked.com/thyroidu...

Arkenstone profile image
Arkenstone in reply toSlowDragon

Thank you you so much slow dragon.

SlowDragon profile image
SlowDragonAdministrator

all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

As you have only just been diagnosed with autoimmune thyroid disease…

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

in reply toSlowDragon

Thanks for this. You kindly provided me with some of this, really useful, info on an earlier post. Very much appreciated.

purplespottycat profile image
purplespottycat

my nutritional therapist (functional medicine practitioner), who also has Hashis, always says the same thing when I'm ranting about my GP's lack of support. They should be doing 'good ol' fashioned' testing of the reflexes, as it is very evident in Hashis that they aren't normal! I haven't physically seen a GP in over 3 years, let alone been touched by one to do my reflexes! Out of morbid curiosity, ask if they'll test your reflexes and see what they say!

I'd also suggest having ready a full list of your various symptoms, and if possible historically any periods when you felt well/awful (if you know what dose you were on at that time, if not get GP to check on your records). I found reading this article interesting, as there's lots of symptoms we might not think are linked to Hashis, but reading them on a list, we go 'oh yes, I have that!'. There are others online, I just remembered the '300' bit for some reason.

hypothyroidmom.com/300-hypo...

My GP always dismisses my symptoms as 'non specific' and that the thyroid gets blamed for a lot of things when it isn't at fault; prepare yourself to defend your corner and reinforce the case to test for other things 'it might be' so that they can be 'ruled out' (to get them on board for ordering the blood tests SD has mentioned).

shaws profile image
shawsAdministrator in reply topurplespottycat

Unfortunately for us, the patient, few GPs know much about treating a patient who's hypothyroid.

One of mine phoned to tell me:-

"Your TSH is too low - your T4 too low and your T3 too high!"

Me: Yes doctor that's because I take T3 only, therefore T4 will be low and T3 high.

GP: But T3 converts to T4. - Me: I'm sorry doctor but that's untrue - T4 should convert to T3.

purplespottycat profile image
purplespottycat in reply toshaws

rolling eyes emoji, gaping mouth emoji, banging head against the wall emoji... They might have been to med school, clearly thyroid is missing from any tutorial/paper/exam/discussion. No less frustrating for us.

Was there also an alarmed sharp intake of breath followed by 'you're on WHAT?!?!'

shaws profile image
shawsAdministrator in reply topurplespottycat

It was a phone call, so he would not be able to see my reaction.

Charlie-Farley profile image
Charlie-Farley in reply topurplespottycat

Perhaps the syllabus at Med School has had a full thyroidectomy ? 🤔

🤣👍

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