This is my first time here I’m currently 24 years old and I was diagnosed as hypothyroid In my heel prick test as a baby. I have always taken levothyroxine at varying dosages.
I am currently taking 100mcg one day and 125mcg the next alternate. I am right at the top of the range in my blood tests and my doctor wants me to take less. I feel as though I cannot find the right dose for me. I am constantly tired and have to take 1 -2 hr naps each day just to function. I also struggle with muscle cramps. No matter if my dose is increased or decreased I’m still exhausted every day.
Please help me as this is driving me insane. Do I need to see a specialist?
Written by
Nurseamber2012
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Many members have been very disappointed with their consultation with an endo.
As a first step, post your latest test results on here, and include the reference ranges (they differ from lab to lab). To get a full picture you need a full thyroid panel plus vitamins and minerals as nutrient levels need to be optimal for thyroid hormone to work properly. Ideally you need
TSH
FT4
FT3
Thyroid antibodies
Vit D
B12
Folate
Ferritin
If you can't get all done with your GP then there are recommended private labs that offer home fingerprick tests (or venous blood draw if you prefer).
You sound hypo in spite of your blood tests. It would help to have full details of your blood test results. I would also ask your doctor for a full copy of all your blood test results, I'm sure you will need them sooner or later, probably sooner. As your doctor has been unable to resolve your hypothyrodism it is reasonable to insist on a referral to an endcrinologist. You will need to be friendly but assertive to get an appointment, I would take someone with you for support. What range of doses have you been on in recent years? Also, what are your signs and symptoms other than having to take a nap?
It may not be hypothyroidism and it's possible that by taking more hormone you mask the symptoms. On the other hand it could be hypothyroidism. I would get the blood test done and then try reducing your levothyroxine a bit, perhaps skip your dose for a couple of days (levothyroxine has a long half-life). if your symptoms all get worse you know it is probably hypothyroidism.
There is currently a ridiculous obsession by medics to lower dose to bring TSH into range.
TSH is pituitary hormone and invariably is suppressed when FT3 and FT4 are high enough for correct replacement dose
You need full private testing to see exactly what all your thyroid and vitamins levels are
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
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 ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Presumably you have no thyroid so may need high dose Levothyroxine in order to have high enough FT3
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 otherwise we need high FT4 and suppressed TSH in order to have high enough FT3
Hi guys so I got some bloods done they just did a tft my tsh was 4.9 and my T4 was 17. I was really surprised because I would have thought my t4 was way higher because I am sweating buckets... but still needing 1 nap per day of around 2 hours.
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