I was diagnosed with Hypothyroidism at 18 months old.
My Mum kept taking me to the doctors, just to be fobbed off. we were in Germany at the time ( my parents were in the forces ) Eventually my condition was recognised by an American Doctor, they wanted to give me a really high dose of thyroxine then gradually bring it down, my mum didn't want that so I was given it as a low dose, then gradually increased.
I forgot to mention I am now 42, and to be honest I struggle!
Apart from being tired all the time, Im taking 275 micro grams of thyroxine daily, I've been to see an Endocrinologist, who wouldn't give me any T3.
I just muddle along. I would like to know if anyone is the same as me, late diagnosis after birth, and how it has affected them.
Also, I was one of the test cases, that made the NHS decide to do the Guthrie test. ( we were back from Germany then )
Look forward to hearing from you.
Xxx
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clairebear123
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Not sure how many congenitally hypothyroid patients we have so you may not get feedback.
Do you know your thyroid results and ranges (figures in brackets after results)? Thyroidectomised patients don't always do well on Levothyroxine only as they lack the capability of thyroidal T4 to T3 conversion and may consequently be poor converters with low FT3. If your FT3 is low you may benefit from adding T3 to a reduced dose of Levothyroxine. It can be very hard to get T3 prescribed on the NHS but Greek and Turkish T3 are very affordable and available online without prescription.
I am sorry you've been in ill-health since you were a baby, you don't really know what good health is.
You are taking a high dose of levothyroxine but it's obviously not doing you any favours.
There are other options, one is Natural Dessicated Thyroid Hormones used since 1892 until the introduction of levothyroxine, synthetic T4, in the late 50's and Big Pharma's promotion persuaded the Associations it was better than NDT. It is o.k. for some but not for others who have remained unwell only to be given 'other' medications for the symptoms rather than a decent dose of hormones which suit them.
There is T3 which is also synthetic but many people feel much better with it or the addition of it to T4. T4 (levothyroxine) is inactive and it's job is to convert to T3 but some of us cannot do so effectively. T3 is the only Active thyroid hormone which is needed in all of our receptor cells.
I should also have said when a blood test is due it should be the earliest possible and fasting. You can drink water. You should allow 24 hours between your last dose of levo and the test and take it afterwards. Always get a print-out with the ranges of your results for your own records and you can post if you have a query.
If you've not had B12, Vit D, iron, ferritin and folate tested ask for these as we can be deficient which also gives us problems.
I am diagnosed with congenital atrophied thyroid but not discovered til 47!!
Many have said that having half (atrophied) thyroid gland would make me Hypothyroid but NHS will only consider by borderline bloods (gp can only do some bliss and consultant not considered my horrid symptoms that have a big impact on my life). Oh and won't trial treat me as considered a 'complicated case". Basically I have yet to find someone with expertise in this area.
You poor thing!! Have you tried contacting the thyroid association, I read on here they have a list of Endocrinologist's that hopefully are sympathetic.
The one I saw just fobbed me off, ( I was referred to her by my doctor. ) she wouldn't give me any T3, so i am just going to source it online.
I really do hope you find someone that can help you.
Like you, my gp referred me to local Endo who was diabetes Endo and had no interest or real understanding re thyroid (micro pituitary), just looked at blood tests (and I had to push for them to be done).
I now have the specialists lists you mentioned. My gp has agreed to do an out of area referral to a specialist so I have to choose carefully which one now.
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Congenital/Child Onset Central Hypothyroidism
T3 conversion problem
Hypothyroidism? 
Anybody with congenital hypothyroidism?
Blood test
