Since getting myself in decent health thanks to this forum and liothyronine, I have become quite evangelical whenever I meet another one of us in my everyday life. I am so keen to support and share all the info I have learned from the forum. Today I sent this email to someone I met yesterday who has been struggling after a total thyroidectomy. I wonder if any of you might be willing to take a quick glance at it and confirm that all the info I have included is accurate and comprehensive. My plan is to share it with anyone I meet who tells me they have or know someone with hypothyroidism who is struggling. Thanks in advance!
Absorption of levothyroxine:
The first step before anything else is to make sure you are taking your levothyroxine properly. These factors affect absorption:
Levothyroxine should be taken on an empty stomach, at least 60 mins before any food/caffeine
Soy and some supplements (e.g. iron, calcium) specifically interfere with the absorption of thyroid hormone and should be taken at least 4 hours away, however it is preferable to avoid soy altogether
In other words, do not wash your levothyroxine down with a soy milk latte or bowl of soy yogurt or tea or dark chocolate(which contains a lot of caffeine)
If you struggle to stick to this, you can take your levothyroxine before bed, as long as it’s at least 2 hours after food and 4 hours after soy/caffeine/other supplements
Some studies show that it’s absorbed better when taken at night and I personally do this and I find I wake up feeling better than if I take it in the morning
Hormonal contraception also hinders the absorption of thyroid hormones so if you are taking the pill or have an IUD or implant there is a good chance this is also contributing to the symptoms you’re experiencing
Your TSH should be below 2 as an absolute maximum, but many people need it to be closer to 1 or even well below 1. The higher your dose of levothyroxine, the lower your TSH will go. Ask your doctor to increase your dose of levothyroxine unless it's already around 1. This can vary in patients who've undergone total thyroidectomy.
Your T4 level will go up as you increase your dose of levothyroxine, because levothyroxine is T4. T4 is one of two thyroid hormones that you no longer produce in your body. Most people will feel their best when their T4 is in the top third of the range (if range is 12–22, your T4 should be >18.5). If it's lower than this, ask for a dose increase.
Your dose will usually need to be at least 1.6mcg for every kg of body weight, but you may need more. So this means if you weigh 75kg, your dose should be at least 125mcg (rounded up to nearest dose level). However, I weigh 66kg and my dose of levothyroxine is 150mcg. It's very individual.
The problem with only testing and monitoring T4 levels, as the NHS does, is that T4 is the inactive form of thyroid hormone. Your body must convert it to the active form, which is called T3. T3 controls every process in your body and when there isn't enough, every process slows down (so you don't digest food properly, have constipation and can't lose weight) and other hormones aren’t produced in sufficient levels (which is why you can feel depression and anxiety and terrible PMS mood swings etc etc).
NHS approach to thyroid treatment:
The NHS claim that if your TSH and T4 are within "normal" range, then you shouldn't experience symptoms. However, sufficient levels of T4 with insufficient levels of T3 will make you feel terrible because T4 doesn’t do anything until it is converted to T3. Most people feel best when their T3 is in the top third of the range (if range is 3.1–6.8, your T3 should be >5.5).
Ferritin, folate, vitamin B12 and vitamin D:
Insufficient T3 leads to low stomach acid, so you do not digest food properly, and when it reaches your intestines, your body can’t absorb nutrients from it fully, leading to low levels of nutrients. This makes things even worse because low vitamin levels, particularly low ferritin, folate, vitamin B12 and vitamin D stop your body from converting T4 to T3. So your TSH and T4 will look "good" but your T3 can be very low if you're not converting T4 to T3 effectively. The longer you continue with insufficient T3, the worse you will feel because your nutrients will continue to get depleted with low T3, because it causes low stomach acid so your T4 to T3 conversion will get even worse over time. So, it's super important to get your vitamin levels optimal. Once your levels are where they need to be, you should feel significantly better.
Ferritin should be at least 80, preferably higher
Folate should be top of the lab range
Vitamin B12 should be at least 600
Vitamin D should be at least 100
Start supplementing them if your test results show this is needed. Use the following supplements:
Ferritin: use ferrous fumarate (easier to digest)
Folate: get methylfolate, not folic acid (easier to absorb)
Vitamin D: use a liquid form of vitamin D3 + K2 (easier to absorb)
All of these are available on Amazon. If you have iron-deficiency anaemia (i.e. deficient in ferritin), your doctor can prescribe ferrous fumarate (don't let them give you ferrous sulphate as it's harder to digest). If you have heavy periods (very common with hypothyroidism) then you are very likely to have iron-deficiency anaemia.
Some people have a gene mutation where they are simply poor converters of T4 to T3 (this is called the DIO2 mutation). If you are a poor converter, it won’t matter how optimal your vitamin levels are, it won’t matter if your TSH and T4 look “good”, because your T3 will not be optimal and it’s the T3 level that really matters as this is the active hormone. In this case, you will need to take T3 as well as T4. T3 is liothyronine.
Problems getting liothyronine on NHS:
This article explains this is more detail. You are unlikely to be able to get liothyronine on NHS. So do everything I pointed out above, and see how that affects you. If you have tried all of this and still feel bad, then it might be worth going to a private endocrinologist or self-medicating and asking to be referred to an NHS endocrinologist. They can oversee you self-medicating and order blood tests etc. I order my liothyronine from the US without a prescription and self-medicate. It's not cheap but it has given me my life back.
Ask for these to be tested asap and then you'll know what you need to do next:
Full blood count