I'm looking for some advice please. I have been on Levothyroxine now for about 9 months 50mg then 100mg. My last bloods are attached and my GP says I'm now at normal levels and to stay on 100mg. I feel crap! Anxious, weak, exhausted, brain foggy, dizzy sometimes too. Generally feel unwell and unable to function day to day. I had head and neck cancer 4.5 yrs ago and had a lot of RT to the neck which I think is responsible. I asked my GP to refer me to an Endo which she did but they refused me an appointment.
I'm now planning on getting back in touch with my GP but I wanted to get advice on my levels. How do I read them and are they optimal? What should I be asking my GP?
Any advice greatly appreciated!
Many thanks!
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With a TSH well above normal and FT4 grovelling low in its range, you are anything but correctly treated. You should be raised first to 125 ug T4, then if there's no improvement, 150. The important thing is to get TSH lowered asap. Ideally it should reach about 1 unit or less. Tell your GP that the high TSH is screaming out that you are undermedicated. Never mind the FT4. A steady increase in T4 as I indicated is essential to see if you can achieve adequate therapy.
No, not the average range. A reference range is the interval between which 95% of values of the reference population ie those who were tested to achieve the range, fall into, so that 2.5% of the time a value will be less than the lower limit of this interval, and 2.5% of the time it will be larger than the upper limit of this interval.
The aim when taking thyroid hormone replacements is a TSH of 1 or lower - not above as many doctors believe and FT4 and FT3 in the upper part of the ranges. Your FT4 is quite good but you really need a FT3 as that's the important number.
When you have your blood tests, do you get the earliest possible blood draw? Do you also fast (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test. You also take levo or any other thyroid hormones after the blood draw.
Thanks you. I've not asked for a T3 test but that was going to be one of my requests. I'm aware that not every GP will do them and that I can get it done privately. But then what if i needed it and they won't prescribe it? So how do I tackle getting the TSH lower if my GP thinks it's within range?
I can give you reference to a paper which shows that in T4 therapy, euthyroid (that means healthy) levels of various biological parameters are not achieved unless TSH is 0.5 or less. I believe TUK has the reference on record. You could take a copy to your doctor to explain that TSH needs to be much lower than you currently show.
Thyroid. 2017 Apr 1; 27(4): 484–490.
Published online 2017 Apr 1. doi: 10.1089/thy.2016.0426
PMCID: PMC5385443
PMID: 28056660
Biochemical Markers Reflecting Thyroid Function in Athyreotic Patients on Levothyroxine Monotherapy
Something I've had to do, which seems to have worked so far, is to make a bullet list of your symptoms and how they affect your life. Major on the more obviously hypothyroid ones, and any that are new or have got worse since last time you were seen. Don't forget to mention the more serious ones from a doctor's point of view, such as breathlessness of frequent or worsening palpitations (slight occasional palpitations are more or less "Normal" for a hypo patient.
For example the last list I made contained increased breathlessness and slightly swollen ankles, (a new symptom) especially in the evenings or after walking a lot. But it also included the fact that the hair on my top lip is growing more slowly and doesn't need plucking as often - which is a definite hypo symptom! But I avoided the mention of sometimes feeling very hot because a) I've had the ordinary menopausal hot flushes for years, long before any thyroid trouble, and b) they could be misunderstood as a hyperthyroid symptom.
Then you can give the list to the doctor or endo and ask what they can do to help you, as you are desperate to feel well again. Exaggerate a bit, even cry if you feel like it. Don't tell lies but emphasise how you feel at your worst, especially if you happen to be more or less OK on that day. Some symptoms may only be occasional at the moment, but if you can't get the treatment you need, they will likely get more frequent.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
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