Thyroid UK
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New to site - here on behalf of daughter

Hi, I am here on behalf of my daughter. She is 32 years old and she has become very withdrawn, apathetic, short, snappy, irritable, low, depressed, anxious, tense and I am wondering if it's to do with her bloods? She is meant to be taking 150mcg levothyroxine but she has been taking 50mcg levothyroxine; I am worried she is going to end up very ill. Her GP and endocrinologist do not know about the dose reduction and when I asked her why she is taking a tiny amount she has said if she takes any more than a 50mcg tablet she gets very bad digestive symptoms of bloating, nausea, abdominal cramps. She went to the GP before about this problem and the GP said it was either stress or irritable bowel, she doesn't fully support either diagnosis. She was diagnosed 6 years ago.

Any help would be appreciated, thank you in advance.

DEC 2017 (50mcg levothyroxine)

TSH 4.8 (0.2 - 4.2)

FT4 14.4 (12 - 22)

FT3 3.3 (3.1 - 6.8)

11 Replies
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Your daughter is undermedicated and needs to increase her levothyroxine dose.

Taking levothryoxine and having thyroid antibodies and Hashimotos disease can contribute to gut bacteria imbalance, knocking out good bacteria and causing other problems. It's thought that hypothyroidism may contribute to low stomach acid which can cause bloating and other problems too. Taking a desertspoonful of organic apple cider vinegar (with the mother) in a glass of water before the main meal may reduce bloating and improve digestion. Some people find they need something stronger like HCL Betain with Pepsin.

Your daughter could do the simple stomach acid test in this link

healthesolutions.com/health...

low stomach acid by Dr Myhill drmyhill.co.uk/wiki/Hypochl...

Has your daughter had thyroid antibodies tested? If not, she needs TPO Thyroid Peroxidase antibodies and TgAb Thyroglobulin antibodies tested. If they are positive it will confirm Hashimotos thyroiditis. It's helpful to know because there is a lot she can do to help restore balance for intestinal health and reduce antibodies activity.

SlowDragon has great links to how to heal the gut.

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A dessertspoon of vinegar in water may be rather a high starting dose. I would suggest starting with a teaspoon of apple cider vinegar in a small glass of water - sipping it before and during a meal. Every week or 10 days increase the amount of vinegar by 1/2 a teaspoon until it stops helping then reduce the dose back to what did help.

When people talk about vinegar "with the mother" this link describes what they are talking about :

en.wikipedia.org/wiki/Mothe...

If apple cider vinegar doesn't help there are alternatives - for example, digestive bitters are supposed to help the stomach produce its own acid, or betaine HCL + pepsin :

scdlifestyle.com/2012/06/hy...

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

scdlifestyle.com/2012/03/ho...

scdlifestyle.com/2013/10/4-...

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GP says she does not have Hashimotos.

Thyroid peroxidase antibodies 1000 (<34)

Thyroglobulin antibodies 376 (<115)

Thanks

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Yes she definitely does have Hashimoto's. It's also more commonly called autoimmune thyroid disease here in UK

Suggest you see different GP, this underlines how little current one knows

Your daughter is very under medicated to have TSH so high. 50mcg is standard starter dose and should be retested 6-8 weeks after starting or and dose change, and dose increased by 25mcgs Steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range.

She is highly likely to have very low vitamin levels as result of under medication

Have you got test results and ranges for vitamin D, folate, ferritin and B12? These need to be optimal, not just in range. Post results here or on new post for advice

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels impair how Thyroid hormones work

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 is very poorly understood (despite it being extremely common disease)

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

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...

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:
tukadmin@thyroiduk.org

Going strictly gluten free should help gut. She may also need to consider dairy free.

She was quite possibly under medicated on 150mcg as gut was causing problems.

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

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

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

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Importance of magnesium

hypothyroidmom.com/two-vita...

Getting TSH right down low, healing gut and getting vitamin levels optimal are key. If FT3 still remains low then she may, like many with Hashimoto's need the addition of small dose of T3. But other steps must be done first

Prof Toft - article just published now saying T3 is likely essential for many

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

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DEC 2017

Ferritin 26 (15 - 150)

Folate 2.2 (4.6 - 18.7)

Vitamin B12 233 (190 - 900)

Vitamin D 34.4 (25 - 50 deficiency. Supplementation is indicated)

Ferrous fumarate stopped 2 years ago

Taking folic acid for 2 years

Taking vit D for 5 years

Awaiting B12 injections

Reply

These will be worse now if your daughter cut dose recently

Ferritin she needs full iron panel done and then likely ferrous fumerate 3 x daily. Needs to be above 70

Push for B12 injections urgently and make sure to get them at least every 3 months. If she has low B12 symptoms she should have several injections close together

Ask advice on PAS healthunlocked

healthunlocked.com/pasoc

Folic acid supplements should not be started until after first B12 injection

Not sure about stopping as she is already on them

Vitamin D probably only prescribed 800iu. Not enough for a mouse

Needs to be around 100nmol

Better You vitamin D mouth spray avoids poor gut function

Try 3000iu or 5000iu spray daily. Retesting after 2-3 months.

Vitamindtest.org.uk £28 postal kit

She will need maintenance dose once reaches required level. Trial and error what each person needs, so test twice yearly. Possibly 1000iu or 2000iu

Important not to take too much as it's oil base and can't get rid of excess.

Low vitamins due to under medication

healthunlocked.com/thyroidu...

Low vitamins causing low TSH high FT4 and low FT3

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Reply

Tizzi,

I used to get the same symptoms because I was reacting to the fillers in certain brands of levothyroxine (i.e., acacia, lactose, wheat/gluten, petroleum/aluminum based colorants, etc.)

It went on for years that way before I finally made the connection.

Of course, in the US, we have very few truly hypoallergenic medicine choices available, especially for thyroid.

But, you may have better formula options as far as allergens go.

This may not be what is causing the digestive upset, but it is something to keep in mind just in case. Hope you can get it all sorted out soon:)

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Thank you, she is on Teva levothyroxine. Her endo says her thyroid levels improved on this. Before that she was on Actavis, Mercury and Wcokhardt all of which did not improve her levels.

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Teva is the only lactose free Levo in UK

Perhaps your daughter is lactose or dairy intolerant?

Many are

See The Thyroid Pharmacist website for lots of info. She is dairy intolerant.

You don't have to have obvious, or in fact any, gut symptoms to still be seriously intolerant. (I found that out with gluten. Was absolutely stunned at the difference going gluten free. Subsequently confirmed by endoscopy as severely gluten intolerant, never had any gut symptoms.)

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Also, if there are any gluten intolerance issues, I would make it a point to request the strength that contains no dyes. The dosage can be worked out, alternating doses on different days, halving/quartering pills (that is what I do). There can easily be a gluten component to the dyes that are used depending on where they are sourced; and generally, no one is the wiser, unless you have a sensitivity. At least that's the way it is in the US. I found that one out the hard way.

Hopefully, this does not apply to your daughter, but it was worth a mention just in case:)

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Teva causes terrible symptoms in a lot of people. Try another brand.

Karen

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