Despairing spouse: Hoping someone out there can... - Thyroid UK

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Despairing spouse

nimbus241 profile image
11 Replies

Hoping someone out there can help. Will try and keep it short. My husband is on levothyroxine following RAI in 2006. Six months ago he was absolutely fine, a bit overweight with a hearty appetite. Possibly because of this he suffered intermittently with reflux. In June he started taking lansoprazole on the advice of a pharmacist. He took it around 2 hours after the levo. After taking it for two months he noticed his taste had changed and he had little appetite so he stopped taking it.Since then he has gone badly downhill. He has bad taste all the time. Everything tastes bad and he has zero appetite. His mood is rock bottom and he has lost a stone in weight. He sometimes feels hot and sometimes cold. He phoned the doc this week who has ordered various tests. His TSH has come back as 0.1 (just below range) and his T4 at 17 (upper middle). Previously with these numbers he would have felt well.

We have now read that lansoprazole affects levothyroxine absorption. He has been off the PPI for six weeks now so I would have thought any negative effect on his health would have improved but today he feels as low as ever. Has anyone else felt this bad after lansoprazole? And is it possible that being under treated for a couple of months can make you feel this bad? Thanks for reading!

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PurpleNails profile image
PurpleNailsAdministrator

Please can you add exact result & ranges?

Was just TSH & FT4 tested?  

For full thyroid he also needs FT3 tested - to see how well he converts the levo to the active hormone.

Low stomach acid common with low hypo levels & has same symptoms as high.  

This causes poor absorption of nutrients.  Poor nutrients often results in low FT3, (even if FT4 is adequate)

 What is his current dose?  

 Appropriate guide is 1.6mcg of Levo per 1kg body weight.  Does dose guide appear correct.

Does he always have same brand of levo?

Does his test consistently?  - It’s recommended that blood draw appointment is booked for around 09.00 or as early as possible, fast overnight (only water - lots for hydration & easier blood draw) delay levo until after draw, & avoid supplements containing biotin 3 days before draw (can skew results in testing process) - is this how previous thyroid tests have been completed? 

If GP can’t / won’t test FT3, folate, ferritin, vitamin D & B12 there are private options we can advise on.

List of companies offering different options, some have discount codes available.

thyroiduk.org/help-and-supp...

You order test online the kits arrives via post - sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.  There’s lots of options, some packages include thyroid function, key nutrients and thyroid Antibodies.  Others basic function only.  

Is that something you think he could manage? 

nimbus241 profile image
nimbus241 in reply to PurpleNails

Thanks for reading PurpleNails.

Yes he only ever gets tested for TSH/t4.

TSH - 0.13Miu/L (0.3 - 5)

T4 - 17.3 pmol (7 - 20)

He takes 150 levo and has had the same brand for years.

I will send for a private test to check T3. I was mainly wondering if anyone else has had a similar experience when taking a PPI alongside levo?

Thanks.

SlowDragon profile image
SlowDragonAdministrator in reply to nimbus241

Which brand of levothyroxine?

Does he test as advised…early morning and last dose levothyroxine 24 hours before test

You must include testing vitamin levels too

Has he had Covid?

Seems to upset thyroid levels for many.

What vitamin supplements is he taking

Low stomach acid can be a common hypothyroid issue

Thousands of posts on here about low stomach acid 

healthunlocked.com/search/p...

But never assume it’s low stomach acid 

healthygut.com/4-common-bet...

Web links re low stomach acid and reflux and hypothyroidism 

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

 How to test your stomach acid levels 

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Ppi 

Lansoprazole or Omeprazole will lower vitamin levels even further 

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

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes 

gut.bmj.com/content/early/2...

Iron Deficiency and PPI 

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

PurpleNails profile image
PurpleNailsAdministrator in reply to nimbus241

Yes. Lots of people report similar issues with lansoprazole.

It’s often turns out to be under replacement & potentially low stomach acid further exacerbating nutrient & levo absorption (vicious cycle) 

If it caused a decreased absorption of levo the affects & symptoms can linger for a period, past the time when levels look like they are back to normal.  Especially without knowing what is his normal FT3 level are.

 Hopefully he will find he recovers soon.

Still highly recommend seeing what his FT3 & nutrient level are like.  

SlowDragon profile image
SlowDragonAdministrator

Highly likely he has low stomach acid and poor nutrient absorption leading to low vitamin levels

Reflux on levothyroxine suggests under medicated and not on high enough dose levothyroxine

Just testing TSH and Ft4 is completely inadequate

Ft4 17

What’s the range?

Was test done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Does he always get same brand levothyroxine at each prescription

What vitamin supplements is he currently taking

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine…..or after starting or stopping Lansoprazole

 

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common after RAI

Recommended on here that all thyroid blood tests early morning, ideally just 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

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

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

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Approx how much does he now weigh

What dose levothyroxine is he taking

Come back with new post once you get results

pennyannie profile image
pennyannie

Hello Nimbus and welcome to the forum :

Has your husband Graves Disease and why he had the RAI thyroid ablation ?

Primary hypothyroidism caused by RAI ingestion is said to be more difficult treat as there is no way of knowing how quickly or slowly this toxic substance burns the thyroid out in situ.

RAI is known to ' trash vitamins and minerals ' which must be up and maintained at optimal levels for any thyroid hormone replacement to work well.

RAI is known to be taken up, to a lesser extent, by other glands and organs within the body.

T4 - Levothyroxine is a storage hormone, a prohormone, and needs to be converted within the body into T3 which is the active hormone that runs the body and said to be around 4 times more powerful than T4.

It is essential that your husband is dosed and monitored on his Free T3 and Free T4 blood test results and we generally feel at our best when our T4 is in the top quadrant of its range and this should in theory convert to good level of T3 at around a 1/4 ratio T3/T4.

The TSH seen in isolation is not a measure of anything once on any form of thyroid hormone replacement - and you must arrange at least a TSH, FreeT3 and Free T4 blood test and ideally inflammation, antibodies, and plus the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D, and if the doctor is unable to process your request there are private companies listed on the Thyroid UK website ( the charity who supports this forum ) who can - thyroiduk.org

After RAI thyroid ablation the HPT axis - Hypothalamus - Pituitary - Thyroid feedback loop, on which the TSH reading relies, is broken as the thyroid has been disabled and this circuit loop broken and not a reliable measure of anything

A fully functioning working thyroid would be supporting you in a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100mcg.

The thyroid is a major gland responsible for full body synchronisation including physical, mental, emotional, psychological and spiritual well being, your inner central heating system and metabolism.

Some people can get by on T4 monotherapy.

Some people find T4 seems to stop working well after some time and find by adding in a little T3 to replace that which has been lost - helps restore hormonal balance.

Some can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

I have Graves Disease and post RAI thyroid ablation in 2005 - please see my profile.

Most recent research - ncbi.nlm.nih.gov/pubmed/306...

Research for all things Graves and auto immune - elaine-moore.com

DippyDame profile image
DippyDame

Lansoprazole can cause a decrease in the absorption of Levothyroxine resulting in a reduced serum concentration and potentially a decrease in efficacy.

It sounds very possible that he may (now be) undermedicated!

If his thyroid hormone levels have been inadequate for his needs that could have caused the reflux. Increasing his levo dose may have helped rather than adding lansoprazole.....but without labs we can only guess!

Depending on his levo dose and labs with ref ranges, his body may already have been struggling overweight/ undermedicated?) before the addition of lansoprozole ......which then further reduced the absorption and hormone levels.

That has very possibly caused the problem he's experiencing.

But, we need more info please...

Testing FT3 with FT4 is essential for an accurate evaluation of thyroid function

Over to PurpleNails who has already given you excellent advice

Good luck

PS

Sorry, just noticed you have now posted more details! Thank you.

I suspect his FT3 is low in range.

T4 to T3 conversion possibly poor.

Optimal nutrients ( below) essential to support thyroid function/ conversion

T3 is the active thyroid hormone and for good health is essential to every cell in the body

Low FT3 = poor health

Full thyroid test essential to include...

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg

thyroiduk.org/.

nimbus241 profile image
nimbus241 in reply to DippyDame

Thanks DippyDame. That's a good point about him possibly being a bit under medicated before the lansoprazole. He was feeling fine at the time but I see on his records his TSH in Nov 2021 was 1.7 (0.3 - 5) which was higher than usual. We didn't think much of it as he felt well.

Have just ordered FT3 test from Medichecks.

nellie237 profile image
nellie237

Hi nimbus241,

I don't mean to worry you, but this really sounds like it needs further investigation. The unintended weight loss is a concern. I went through a period of having a horrid taste in my mouth a few years ago..........it was so bad that I was sucking polo mints in bed, because I just couldn't stomach it.

I went to the dentist, then the GP and got referred to maxillofacial who immediately discharged me. It turned out to be coeliac (I also have a hiatus hernia). It may be something relatively easy to treat, but I recommend push them to find it.........otherwise they won't.

nimbus241 profile image
nimbus241

Thank you all for your help and advice. I will post again when we have more results.

Batty1 profile image
Batty1

Maybe he needs to do a private blood test to see exactly what his levels are doing now … follow the test advice given here.

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