Thyroid UK
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Congenital hypothyroidism. New to the community, gaining weight & looking for change - help!

Hey guys, I stumbled across this community when looking for answers to my persistent thyroid troubles. I'm feeling a little overwhelmed with all the information I'm reading with no idea where to start so I'm hoping someone who's been down this path can help me.

Some background about me to start - I'm a 28 year old woman living in Ireland, diagnosed with congenital hypothyroidism at birth due to a defective thyroid gland. I have very little (read: practically zero) thyroid function naturally and rely completely on replacement hormone. I've been taking Levothyroxine since birth, gradually increasing the dose as I grew up until my dose settled at about 175mcg/day a few years ago. My blood tests/TSH seems to always show up normal around that dose.

That said, over the last number of years I feel like I'm really getting all of the symptoms of hypothyroidism, even though my bloods don't show it. I feel tired all the time, and my skin is exceptionally dry. The worst symptom for me is the weight gain. My weight seems to always be creeping up, even though I don't feel like I eat a huge amount more than the average person. It's now getting to the point where I'm really overweight. However, when I say this to my doctor, he just shrugs me off and says my TSH is normal and to watch my diet and exercise.

Which brings me to where I am now - I want to explore alternatives. I want to set this right once and for all. Because I've had hypothyroidism my whole life, I've never known any different so it's hard for me to tell what normal is. It could well be normal, I just don't know. All I know is I'm tired and I can't control my weight.

I've asked the doctors to increase my thyroxine dose but they won't with my blood test results. I've been reading up online about T3/T4, but I don't really know where to start, especially given my doctor isn't really interested. It's just so much information it's really hard to know how to actually be proactive and try to sort this out myself.

Hoping someone can help!

Thanks for reading:)

6 Replies
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First thing is do you have any actual blood test results? If not you need to get hold of them. You are entitled under data protection laws.

You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.

If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

You need to know results for TSH, FT4 and FT3.

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

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

Prof Toft - article just published now saying T3 is likely essential for many, note especially his comments about thyroidectomy and RAI patients. Presumably with congenital hypothyroidism this applies to you too, with no thyroid function of your own T3 more likely to be required

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

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

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

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I just had a blood test last week, but I'm not sure whether they just tested for TSH or all.

I had also taken my levo 12 hours before so hopefully that doesn't skew things - I'd never heard the 24 hour rule before :/

I was told to call and get my results tomorrow morning. I'll ask for TSH, FT4 and FT3. I hope this reveals something!

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Also - thanks for these links. If I don't get the test results I need tomorrow I'll check out these self-tests.

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Update: They tested for T4 and TSH. They said my T4 was "normal" and my TSH is 4.43. Suggested increasing levothyroxine dose to 200mcg at weekends. I asked for my sample to be tested for T3, and after much quizzing and interrogation, the doctor agreed to ask the lab if they still had my sample and to test for T3. If not, they'll test in 6 weeks after my new dosage has settled in.

I asked to be referred to an endocrinologist who I know to have a good rep and they said to wait until after 6 weeks to see how I get on on the new dose. I'm tired. Why can't they just listen to what I'm saying?

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TSH should be just under one

So you are definitely under medicated - you will probably need more of an increase than just 2x 25mcg per week.

At least 200mcg on alternate days. So that's 7 x 25mcg extra per fortnight instead of their suggestion of 4 x 25mcg per fortnight

What was FT4 result and ranges

Ask GP to test vitamin D, folate, ferritin and B12 either now (ideally) or at retest in 6 weeks

Reply

adore89,

"Normal" for FT4 might be something like 12 to 22.

I keep wondering if the person telling you that your result is normal would be happy for you to adjust the thermostat in their office - from the comfortable 22 down to 12? (The numbers just happen to work for this - sheer chance.) Would they be OK working in that for the rest of the day? Week? Year?

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