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Thyroid UK
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Noncompliant daughter

Hi, my daughter is noncompliant with her levothyroxine. She has been getting symptoms of sweats, tremor, insomnia and weight loss and this is confusing her and doubting her diagnosis. She was diagnosed in 2011 with hypothyroidism and is 28 years old. Thank you

Ferritin 41 (30 - 400)

Folate 2.3 (2.5 - 19.5)

B12 211 (190 - 900)

Vitamin D 51.2 (50 - 75 suboptimal advise on sun exposure and diet)

34 Replies
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Hi Katrinne

What is your daughter's prescribed dose of levothyroxine? Do you know whether she has ever taken it according to her doctor's advice? Do you have any of her lab test results, that she wouldn't mind sharing with the forum?

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Thank you, her prescribed dose of levothyroxine is meant to be 175mcg, however I am sure she needed an increase at the time of 200mcg. She has been reducing it herself, sometimes stopping it altogether, based on symptoms as well as not wanting to have it taken away by her GP. But yes, she was fully compliant from diagnosis up to 3 months after diagnosis. Her most recent results are (on levothyroxine 175mcg)

TSH 4.5 (0.2 - 4.2)

Free T4 14.8 (12 - 22)

Free T3 3.2 (3.1 - 6.8)

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With a TSH of 4.5 she was clearly undermedicated on 175 mcg. Another 25 mcg might well help, but I see that her FT3 was very low in the lab reference range. It may be that a small amount of T3 added to the T4 would help her at some point, but if her doctor is actually offering an increase in the levo, it would be worth trying this first.

Her symptoms sound severe. Why is she denying her health problem, do you think?

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Thank you, unfortunately no increase has been suggested by her GP or endo, since her results are not following a pattern. She is denying her health problem since she gets days where she feels ok and then days where she feels awful again.

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I see your daughter has high TPO antibodies, which indicate Hashimoto's thyroiditis. In the early years of the condition, thyroid hormone levels can fluctuate quite a lot (it depends on the individual).

Although some of the symptoms you describe are usually held to indicate hypERthyroidism, or over-treatment with levo, some of us with hypOthyroidism suffer from similar symptoms, even when treated. The diagnostic and treatment pictures are not always as clear as we would like them to be, unfortunately.

The best thing your daughter could do now is to maintain her treatment, and to keep a daily diary of symptoms, basal pulse (i.e. before she rises in the morning), basal temperature and blood pressure. She might then be able to spot patterns which could be related to the swings and roundabouts of Hashi's. It would be easier to advise her further from that point.

People with Hashi's often find benefit from a gluten free diet. (I certainly have. I fell off the wagon 10 days ago and am still suffering!) Please also look up SeasideSusie's advice to others on the forum about optimal nutrition for thyroid disease.

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sweats, tremor, insomnia and weight loss are signs of HYPERthyroidism. Perhaps she is noncompliant because the initial diagnosis is wrong or her condition has changed. Autoimmune hypothyroidism can cause flare ups of remaining thyroid tissue pumping out extra hormone. Her doctor or endocrinologist should examine her physical signs and measure her TSH, fT3, fT4. There is an inconsistency between the diagnosis of hypothyroidism and her current signs.

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TSH 4.5 (0.2 - 4.2)

Free T4 14.8 (12 - 22)

Free T3 3.2 (3.1 - 6.8)

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When diagnosed her thyroid levels were

TSH 37 (0.2 - 4.2)

Free T4 10.2 (12 - 22)

And her antibody levels were

TPO antibodies 903.1 (<34)

Thank you

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The results above indicate she would probably be a little hypo. How was she at the time of the blood test? Is it possible she takes extra?

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Thank you, her symptoms were very much hypothyroid - puffy eyes, constipation, headaches, heavy periods, feeling cold, depression, memory loss, tinnitus, pins and needles, fatigue, splitting nails.

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Sorry, no she never takes extra at all.

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Just seen the high antibodies! This could cause wild fluctuations in her thyroid output until the thyroid eventually packs in. However, the TSH 4.5 etc numbers you posted do not indicate this.

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Thank you, no, her results from the time before showed much more wild fluctuations. She was taking 150mcg and the endo wanted her to reduce at the time. She refused to do this because she said she still felt hypo and that the request to reduce was too soon for her.

TSH 0.03 (0.2 - 4.2)

Free T4 25.6 (12 - 22)

Free T3 4.5 (3.1 - 6.8)

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Thyroid flare ups usually show variations in free T3. These numbers look like she just had a little more levothyroxine, or more likely it 'stacked up' which it sometimes seems to do. I suggest she slowly adjusts her levothyroxine dose according to her symptoms but keep her free T4 below 22 since for technical reasons high levels of free T4 are counter productive. Doctors need to pay more attention to her symptoms, less to blood tests and consider some liothyronine (L-T3) if she doesn't get better.

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Sweats and tremors can be due to extremely low vitamins, common when under medicated as she is

Has she had vitamin D, folate, ferritin and B12 tested? Add results and ranges if have them.

First, she absolutely must take same dose everyday on empty stomach and then nothing apart from water for at least an hour after

Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

She is possibly under medicated, but if this test was done after erratic and irregular dosing it's meaningless

She needs to take same dose EVERY DAY for 6 weeks and retest

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Her 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

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's 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 significantly.

Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut and gluten connection is very poorly understood

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 and get vitamins tested if not done already

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

thyroidpharmacist.com/artic...

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Thanks, she was on same dose throughout waiting the 6-8 weeks for thyroid testing

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Then she's under medicated and/or low vitamin levels

She is on relatively high dose, possibly has malabsorption issues going on

Is she careful to take Levo on empty stomach and then nothing apart from water for at least an hour after

Strictly gluten free diet likely essential and will help gut heal

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 – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

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

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

With Hashimoto's we need vitamin levels optimal first and most need to be strictly gluten free too

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Once vitamin levels are optimal (likely to need supplements) and strictly gluten free diet if FT3 remains low then look at adding small dose of T3

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

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Thanks, she always takes levo on an empty stomach and keeps levo 2 hours away from food and drink

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She takes 1 iron tablet, folic acid and D3 9000iu oral spray, vitamins added

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her B12 is dire, so she needs GP to do testing for Pernicious Anaemia. Probably its just low B12 due to hashimoto's not being under control and will likely need B12 injections. Post these results on PAS healthunlocked and ask them for advice

Folate is too low. Does she take folic acid daily or only once a week?

Adding a good vitamin B complex daily that contains folate is a good idea - but not until after tested for low B12/pernicious anaemia

She's taking a good dose of vitamin D. Recommended to also take vitamin K2 Mk7 plus magnesium as well (eg Calm vitality magnesium powder ) Magnesium and iron must be four hours away from levothyroxine

Ferritin - GP needs to increase prescription to 3 x per day - plus take each dose with 1000mcg vitamin C

will add a link shortly

Insist on test for coeliac disease

She may need small dose of T3 adding, but not until vitamins are improved and strictly gluten free

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She takes folic acid daily.

Thanks

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She may have problem using folic acid.

Perhaps try adding a good vitamin B complex that had folate in.

It's possible to have MTHFR gene mutation, especially more likely with autoimmune thyroid disease

Something to consider

wellnessmama.com/27148/mthf...

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Her symptoms were "puffy eyes, constipation, headaches, heavy periods, feeling cold, depression, memory loss, tinnitus, pins and needles, fatigue, splitting nails." but are now "sweats, tremor, insomnia and weight loss"? If so, this would indicate she was hypothyroid but is now on too much levothyroxine and exhibiting hyperthyroid symptoms.

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Thanks, her FT3 has often always been low. She leaves 2 hours between all drink and food except water

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Thanks, her symptoms are currently puffy eyes, constipation, headaches, heavy periods, feeling cold, depression, memory loss, fatigue, tinnitus, pins and needles, splitting nails, sweats, tremor and weight loss

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jimh111 we see lots with Hashimoto's who are extremely hypo display these symptoms of sweating and tremor - usually when vitamins are low too , as hers are

weightloss common when coeliac or non coeliac gluten sensitive as well

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Yes, I'm aware of poor temperature control in hypo as well as weight loss. It was the insomnia combined with the other three that suggested hyper, but can be hypo.

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Insomnia can be low Vitamin D and low B vitamins

drgominak.com/sleep/vitamin...

List of symptoms includes insomnia

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

Personally I had terrible insomnia when on Levo with undiagnosed dire vitamins

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I have spoken to her about why she is being noncompliant, she says she wants to put others first before herself

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Perhaps her unresolved hypothyroidism underlies it. We can get very forgetful and sometimes apathetic. It affects everyone in different ways. If possible it would be good if she got into a regular routine of taking the levothyroxine, even if the dose wasn't quite right it's a starting point. If a tablet is missed one day it's OK to take two the next day but try to avoid having to.

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She thinks she's being selfish in helping herself get better

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Suggest she gets a weekly pill dispenser and keep it by the bed. That way you can see immediately if you have forgotten to take it

It's incredibly difficult to remember if you have taken a pill, if you do it every day

It's also very hard to accept mentally that you have an illness that requires daily medication, especially at a young age. You can feel incredibly vulnerable or be in denial that this little daily pill is keeping you alive

But in reality we couldn't survive without water everyday either. But can still be mentally hard to accept that a little white pill is also essential

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Does your daughter live with you ?

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Some hypothyroids do loose weight

Her symptoms are classic for severe HYPOTHYROID and she needs to get back on levothyroxine quick

She also needs to raise ferritin and b12 is very very low so needs B12 plus compound vit b too

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