Hello, I am new to this site and here for my daughter. She was diagnosed hypothyroid 6 years ago and her endo thinks her illness has gotten worse despite her taking 150mcg levothyroxine.
Her hips and ribs have a constant dull ache and it is making her short of breath.
She has gotten a very bad urine infection, this is her 3rd one this year.
She has constipation throughout the day.
Her period has come late and she gets knifelike pains when it's due.
She is tired throughout the day.
Eyebrow hairs dropping off her face and eyelashes malting under her eyes.
Face muscles twitching.
Dark circles under her eyes.
Getting dehydrated easily.
If anyone could advise I would be grateful. She wouldn't come on here in person because her partner has been playing down her symptoms saying they might be nothing untoward and this made her feel low and a hypochondriac but I don't think she is imagining anything.
Thank you
TSH 7.3 (0.2 - 4.2)
Free T4 13.9 (12 - 22)
Free T3 3.4 (3.1 - 6.8)
TPO antibody 378 (<34)
TG antibody 299.5 (<115)
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Julie1166
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I'd sack the Endocrinolog immediatleyt. Your daughter's TSH is far too high and should be 1 or below. She is on insufficient hormones, thus the cause of all her awful symptoms. 150mcg is not a high dose.
She has an Autoimmune Thyroid Disease called Hashimoto's and that is because there are antibodies present. The antibodies wax and wane and attack the thyroid gland until she is hypothyroid.
The most important hormones Free T4 and Free T3 are at the bottom of the range instead of towards the upper part.
Your daughter will have to read, learn and ask questions on the forum as the aim is being symptom-free with optimum thyroid hormones. Ask GP to test B12, Vit D, iron, ferritin and folate. All have to be optimal and if low cause symptoms too.
Blood tests have to be at the very earliest possible, fasting (she can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test and take afterwards.
Julie1166 What on earth is her GP doing leaving her on 150mcg Levo with results like that! The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges. She needs to make an appointment with her GP and ask for an increase of 25mcg, followed by regular retesting/increases of 25mcg every 6-8 weeks until she feels well.
To support her request, she should take the following information from ThyroidUK's main website thyroiduk.org.uk/tuk/about_... > Treatment Options:
"Dr Toft 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)."
She can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print if off and highlight question 6 to show her GP.
Dr Toft is past president of the British Thyroid Association and leading endocrinologist. He also wrote a booklet for patients, published by the British Medical Association, "Understanding Thyroid Disorders", which says "many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above." The booklet is available from pharmacies and Amazon for £4.95
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Also, her high antibodies confirm autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. She can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin which is a protein thought to trigger antibody attacks. Supplementing with selenium L-selenomethionine 200mcg daily and keeping TSH suppressed can also help reduce antibodies.
Doctors tend to dismiss antibodies as being of no importance and don't understand the nature of Hashi's so she's best learning as much as possible about it so she can help herself.
Hashi's and gut/absorption problems tend to go hand in hand and often low nutrient levels are the result. If she's had the following tested, post the results, say if she is supplementing, with what and the dose. If not already tested she should ask for them to be done:
Thanks she told me the endo wouldn't up her dose until 8 weeks have gone by but from what I've read she can increase when 6 weeks have gone by. She has been on the 150mcg for 6 weeks so surely asking for an increase is ok?
As it takes 6 weeks for a dose change to be fully active, it's generally 6-8 weeks but with those results I can't see the problem with testing/increasing at 6 weeks, it's very obvious that an increase is going to be necessary. However, endos seem to be a law unto themselves so it looks as though she's going to have to wait until 8 weeks.
She is very under medicated to have TSH so high. Low stomach acid may be preventing good absorption of her Levo and vitamins
Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.
Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. When they are too low they stop Thyroid hormones working.
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
Changing to a strictly gluten free diet may help reduce symptoms. Very many of us find it helps significantly m eventually lowering antibodies
Yes I think she needs a new endo too, he won't increase until 8 weeks have gone by but she's been on 150mcg for 6 weeks and from what I've read I'm sure an increase is what she needs right now
Calm vitality magnesium powder is cheap and easy to use. Start on low dose eg 1/4 teaspoon and increase slowly until it helps improve constipation. Take at least 4 hours away from Levo
So if take Levo at bedtime, mid-late afternoon.
Taking Levo at bedtime can give better results
Always take 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
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