Any improvement?: Hi everyone, Can anyone advise... - Thyroid UK

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Any improvement?

Vanessa09 profile image
19 Replies

Hi everyone,

Can anyone advise if there has been any improvement in my daughters results from August and most recently, December please?

She has decreased from 200mg to 175mg in July/Aug '21.

We spoke with an endocrinologist who suggests her body is not absorbing the medication which is why her levels are playing up. Apart from the usual tiredness, she says she feels fine.

I can only add 1 photo so here are December's results:

Serum TSH level 65.5 mu/L [0.27 - 4.2]

Outside reference range

Serum free T4 level 13.1 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 3.8 pmol/L [3.1 - 6.8]

Thank you everyone

Xx

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Vanessa09 profile image
Vanessa09
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19 Replies
SlowDragon profile image
SlowDragonAdministrator

Wow…..she is now seriously under medicated

Low Ft4 shows she’s not taking enough levothyroxine

(or not absorbing it)

When does she take levothyroxine

Always on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours minimum

No iron, magnesium, vitamin D or calcium within 4 hours of levothyroxine

Vanessa09 profile image
Vanessa09 in reply to SlowDragon

Oh damn! I thought it would've improved!!

When does she take levothyroxine9pm-10pm (3-4 hours after dinner)

Always on empty stomach and then nothing apart from water for at least an hour after

Yes and yes

No other medications or supplements within 2 hours minimum

No

No iron, magnesium, vitamin D or calcium within 4 hours of levothyroxine

No

SlowDragon profile image
SlowDragonAdministrator in reply to Vanessa09

On levothyroxine TSH should always be under 2

Most people when adequately treated will have TSH around or under one

Ft4 and Ft3 at least 50-60% through range

Ft4 is only 11% through range

So indicative of under medicated

Ft3 slightly better at 19%

Conversion of Ft4 to Ft3 being pushed by extremely high TSH

Which brand of levothyroxine is she taking

Request trial on liquid levothyroxine if not tried it

So she’s on absolutely strictly gluten free diet?

What about lactose free diet

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements is she taking

Has she been tested for

H Pylori

SIBO

SlowDragon profile image
SlowDragonAdministrator

Looking at this skin photo healthunlocked.com/thyroidu...

Has she had coeliac blood test

Is she on absolutely strictly gluten free diet

When were vitamin D, folate, ferritin and B12 last tested?

What vitamin supplements is she currently taking

Which brand of levothyroxine is she currently taking

Which brands of levothyroxine has she tried

Have you considered lactose intolerance?

Extremely common if also gluten intolerant

Lactose intolerance frequently results in needing high dose levothyroxine

This can improve on lactose free diet and lactose free levothyroxine

Persistent cough is often suggestive of lactose intolerance

Has endocrinologist suggested trying liquid levothyroxine

Likely next step, along with vitamin and coeliac testing

Vanessa09 profile image
Vanessa09 in reply to SlowDragon

Has she had coeliac blood testYes - her dad is coeliac with hypothyroidism. Hers was negative

Is she on absolutely strictly gluten free diet

No

When were vitamin D, folate, ferritin and B12 last tested?

Earlier this year - I may have put the results on here?

What vitamin supplements is she currently taking

None.

Which brand of levothyroxine is she currently taking

Accord

Which brands of levothyroxine has she tried

I think it's always been this since birth

Have you considered lactose intolerance?

No, although we rarely have lactose

Extremely common if also gluten intolerant

Lactose intolerance frequently results in needing high dose levothyroxine

This can improve on lactose free diet and lactose free levothyroxine

Did not know this! Will change her diet

Persistent cough is often suggestive of lactose intolerance

No cough

Has endocrinologist suggested trying liquid levothyroxine

No. Still at early stages of investigation

Likely next step, along with vitamin and coeliac testing

SlowDragon profile image
SlowDragonAdministrator in reply to Vanessa09

Previous post mentions persistent cough

Skin rash suggests coeliac or gluten intolerance

Strongly recommend trialing absolutely strictly gluten free diet 3-6 months minimum

SlowDragon profile image
SlowDragonAdministrator in reply to Vanessa09

her dad is coeliac with hypothyroidism. Hers was negative

So was your daughter born with no thyroid at all

Or does she have autoimmune thyroid disease

Her Dad being Hashimoto’s and coeliac…..suggests she likely is autoimmune

Coeliac test is extremely unreliable

(I have the T shirt for that ….wasted 20 years not addressing serious gluten intolerance, despite negative coeliac testing)

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

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 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

As coeliac result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift and skin to improve

Also can (very slowly) improve malabsorption issues

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

Vanessa09 profile image
Vanessa09 in reply to SlowDragon

So was your daughter born with no thyroid at all

Or does she have autoimmune thyroid disease

Unsure - she was diagnosed from the guthery test at 3 weeks. It was suggested she has no thyroid but never been x-ray'd to confirm

tattybogle profile image
tattybogle

No, they are now terrible (but in the other direction .. now vastly undermedicated ) TSH is WAY too high.

fT4 is very low . fT3 is pretty low.

She may feel ok at the moment , but these results strongly suggest she won't stay feeling OK on the current dose for much longer.

Having said that ,it is a much bigger change in TSH and fT4 than just a 25mcg drop in dose would account for . so i think there must be something else going on here.

SlowDragon profile image
SlowDragonAdministrator in reply to tattybogle

I agree

Vanessa09 profile image
Vanessa09 in reply to SlowDragon

Could this indicate she may be missing doses? She's 17 and forgetful! If so, would it have to be long term, days, weeks at a time? Or could just 1 day mess this up xx

SlowDragon profile image
SlowDragonAdministrator in reply to Vanessa09

Usually would have to be missing quite a lot of doses

But some people have highly responsive TSH …

The problem is the more hypothyroid someone is…the more forgetful they become

Has she got weekly pill dispenser……can help see missing doses

Vanessa09 profile image
Vanessa09 in reply to SlowDragon

Yes she does but doesn't use it. I'll reintroduce it.

tattybogle profile image
tattybogle in reply to Vanessa09

to get her TSH to go up to 65 she would probably have to have no levo for many, many days, if not weeks ... eg . i left off totally for about a week and a half ,, and TSH went up to 7 ish from it's usual 0.05 ish.

Just an occasional day of forgetting would absolutely not do that to TSH.

Even if ,for example , you were supposed to take 175 a day, and you forgot on average 1 day each week, the effect would be like taking a dose of 150mcg all week instead . which would raise TSH a little and lower fT4 a little , but that still wouldn't be enough to send TSH up to 65 without something else interfering with the process.

There is definitely something odd occurring here , but unless she's stopped taking it for weeks i don't think it's her 'doing' it

Vanessa09 profile image
Vanessa09 in reply to tattybogle

Thank you for this clarification. I've told her we are going to try a gluten and lactose free diet whilst working with the endocrinologist too.

Thank you xx

Vanessa09 profile image
Vanessa09

Thank you both xxx

greygoose profile image
greygoose

I really think she ought to have an ultrasound - and her antibodies tested - to know what exactly is going on in there. At the moment, her doctors are working blind.

Does she take any form of biotin - either by itself or in a B complex? If so, did she stop taking it for a week before the blood draw? That TSH is very suspect.

Vanessa09 profile image
Vanessa09 in reply to greygoose

Yes I'm going to request this when I speak to the endo - promise.No she doesn't take anything else.

greygoose profile image
greygoose in reply to Vanessa09

Don't let him fob you off! Whatever makes them think they can treat patients when they don't even know what they have?!?!

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