Basic guide for you who are new to thyroid issues
I wanted to make the guide I wish I had had. Way back when, more than 20 years ago. Knowledge that could have saved me a lot of suffering. Maybe I would have been more healthy today.
So it is my hope, this info will help you. Of course, there is so much info today, compared to earlier. But maybe there is too much info for someone new to this. I hope I can make it,if not easy, then at least possible to understand.
I don’t know how you are feeling at present. If you have just been diagnosed with hypothyroid, with autoimmune thyreoditis, have had your thyroid removed or maybe you are struggling to get a diagnosis. Maybe your doctor is dismissing you, but you feel sick and know something is wrong.
What are NORMAL thyroid levels?
Let’s start with that, what’s normal. Because it is not a TSH between 0,5 and 4,5, I can tell you that. I am not going into long explanations, I don’t believe that is what you need right now. But if you want more info on this, you can find it here.
Normal thyroid levels
TSH around 1,5
Free T4 a little under mid range
Free T3 around mid range
These are normal thyroid levels based on a study of 3800 people. But some might have a higher FT3 as well. But I don’t think many have a FT3 much under midrange . If your FT3 is just a little lower than this, you could try to increase your conversion, that is T4 to T3. As long as your FT4 is not very low, there is a possibility that you are just lacking some important vitamins, and especially minerals. Even if FT4 is low, Iodine, selenium, zinc, iron and magnesium might increase the production. Iodine is particularly important for the production. Selenium and Zinc for the conversion.
So have these minerals tested. Iodine must be tested in a 24 hour urine test, or better, the Hakala Iodine loading test. A blood test is no good.
Iodine is very important. If your FT4 is under 11 pmol/L (0,7 ng/dl), you are for sure iodine deficient. Iodine deficiency is a major cause of Hashimotos. Please read my post Iodine for beginners . I believe most hypothyroid are iodine deficient. Goiter and nodules are iodine deficiency.
Vit D is also very important. Needs to be 70, better over 100. Low vit D can gice a slightly elevated TSH, and a lot of symptoms.
What thyroid tests should I ask for?
If this does not help, or you know that you are hypo, and these measures will not avail. What tests should you ask for? What if the doctor will only do TSH, and he says, it’s normal?
As I wrote, a TSH over 1,5 is not normal. It might be a little higher if you are elderly. In Norway, it is adviced to always test Anti-tpo on the suspicion of hypothyroidism. But I am sure, many doctors don’t. In Denmark, only TSH is tested. I know this is the case many places in the world. But we have internet labs now, selling home test kits. So get one of those if you have to.
Make sure to test early in the morning, must be before 9 AM. TSH falls, becomes lower, after that. A TSH of 1 at 3 PM, could have been 2 at 8 AM. So, if you want the doctor to realize you are sick, this is vital. And many doctors and nurses are not aware of this fact. They believe, it does not matter when in the day test is taken.
What to test for:
TSH, Free T4, Free T3
What do all those abbreviations mean?
Yes, there are a lot of abbreviations flying around. Here are the main ones:
TSH, Thyroid-stimulating hormone. It’s only a signalling hormone. It does not affect our cells. The pituitary releases it to promt the thyroid to produce more T4 and T3 when blood levels of in particular FT4, but also FT3 are running too low.
T4, Total T4. When it says just T4, not a “F” in front, or” free”, it means it is total T4. That is T4 hormone that is bound, usually to TBG. It cannot work on the cells in this bound form. Most of our T4 is in this bound form.
Free T4, FT4. This is the T4 hormone that is not bound, it can be used directly. It will be converted to FT3.
Free T3, FT3 is the form of thyroid hormones that is actually used by the cells, the only active form.
Reverse T3, RT3. As the FT3 is the gas of the engine, RT3 is the brake. The body produces app the same amout of free T3 and reverse T3 in a day. 28 to 30mcg. It’s perfectly the way it should be, to have a mid range RT3. I know some say otherwise, but that is not correct. It’s when RT3 is very high in range, or over range, that you need to worry about it. It’s not something we need to test all the time.
Thyroglobulin, Tg is a protein that T4 and T3 is bound to in the thyroid. It is only inside the thyroid. If it is found in the blood, it must have leaked out.
Anti-tpo, Anti-thyroid peroxidase is an antibody to an enzyme inside the thyroid.
TRAb, TSH receptor antibodies. There are 2 kinds, stimulating as seen with Graves, hyperthyroid, and blocking as seen with hypothyroid.
Anti-Tpo and Hashimotos
Why is Anti-TPO important?
I don’t think you need to understand all about Anti-TPO at this stage. But it is very important to have it tested, as it shows whether or not you have Hashimotos, a form of auto immune thyreoiditis. And whether you have Hashimotos or hypo thyroid from other causes has a lot to say for prognosis as well as treatment.
One can have some Anti-TPO without having Hashimotos. But if Anti-TPO levels are high, then it is Hashimotos for sure. And even if they are not very high, if TSH is slightly elevated and FT4 low, then it is also probably Hashimotos you have got. You can read more about Anti-TPO here
NB! App 10% of Hashimoto patients do NOT have elevated Anti-TPO. they have only elevated Anti-TG. It’s important to know this, and most doctors don’t. That is why it’s important to test for Anti-TG. You can read more here
That is the first thing that happens. The thyroid is struggling to make hormone, and FT4 becomes lower. The body manages to keep the FT3 level up for a while. But in time, that becomes low as well.
Getting medicine when FT4 is low and you have antibodies, is very important. Don’t live with low FT4 and FT3. We become damaged from a low FT3. Levothyroxine also brings the Anti-TPO down.
It’s very important to get Anti-tpo down. Anti-TPO can over time contribute to the deterioration of your thyroid. Anti-TPO is not the main destroyer, contrary to what many believe. But it contributes. And if you are at the beginning of your disease, getting the Anti-TPO down might even reverse the disease process.
You want to do everything you can to keep it intact. It’s very important that we have our thyroid. Even if it at some point doesn’t manage to produce that much hormone any longer, it contributes to the conversion of T4 to T3 in the body. And you become tired from high levels of antibodies, from the high activity in the immune system.
The main thing to getting Anti-TPO down is to stop eating gluten. Many of us with auto immune thyroid disease (AITD) are gluten intolerant. Several studies show that not eating gluten brings Anti-TPO levels down. Sugar is also not good. I personally have no problem letting be gluten. Sugar is another matter. Even though I can feel, it’s not good for me. If I eat gluten, I get tired very fast, with an aching pain between the shoulder blades. There are many other symptoms you can get as well.
To have one’s selenium tested, and supplement if too low, is also very important. Selenium can get Anti-TPO down and it protects the gland. Some Norwegian doctors now say, the range for selenium is way to low. It should go all the way up to 3 ng/dl. Toxic levels are at 3,5 and over.
This stuff about Anti-TPO is one of the things I really wish I had known from the start. Plus optimal levels. Plus iodine deficiency. I went to an expensive, functional clinic in Oslo a few years into my disease. I had food intolerance tests, which showed that I could not tolerate wheat, rye or barley. The doctor then said, you can try eating spelt instead! What a mistake! If you cannot tolerate these other gluten containing cereals, you will not be able to tolerate spelt either.
What if I don't have a thyroid?
If you have had your whole or parts of your thyroid removed, then it is very important that you are not being underdosed from the get go. It’s a big deal, having our body’s power station removed. And if there has been cancer or suspicion of cancer, even more so.
So the last thing you need, is being left with too low thyroid levels. In Norway, they often start people who have had a thyoidectomy on 150 mcg. A common dose for people without a thyroid is 175 mcg T4 medicine. But in Denmark I often see people get as little as 100 mcg. And becoming very sick and under dosed.
If you have had only part of your thyroid removed, I believe they often wait a bit and see, how things turn out. Just keep an eye on it yourself. Look at your blood tests, and don’t live too long with low levels. I would think it would be better to give some medicine, and rather decrease dose if one becomes hyper.
It is important to know, that all thyroid antibodies are produced INSIDE the thyroid. So if we have no thyroid, or only a little left, antibody levels will come way down.
Is T4 medicine enough when I don't have a thyroid?
For some, T4 is enough. At least for a while. But many without a thyroid will need T3. Keep an eye on your levels. The thyroid produces both T4 and T3. How much T3 is individual. Many believe it produces 20% of the daily need for T3. But a study has shown, that it actually varies a lot, between 10 to 40%. so you can see, some will not be able to do without T3 medicine at all. The thyroid itself also helps with the conversion T4 into T3 in other parts of the body.
How do I know that my dose is correct?
You know because you have learnt where your levels should be. You ask for a copy of all your thyroid tests. And save them. You want the option to be able to go back in time. You are not leaving your health and your life in the hands of the doctors. We cannot do that, sadly. They are not competent enough.
And you take your temperature. That is the best test. In the daytime, it should be 37 C /98,6 F. Under, and your thyroid levels are too low.
Where should my thyroid levels lie when I take medicine?
Optimal levels on T4 medicine
TSH not over 1
Free T4 in upper third of range
Free T3 around mid range
I am talking about T4 medicine here. In Scandinavis one would never get anything but T4 medicine as a first medicine. And I think it is correct starting there. If it works, it’s so much easier and cheaper than anything else. But if you are starting out on NDT, you can see what’s optimal on that here
If TSH is over 1,5 on T4 meds, you are for sure under dosed. It’s best when it is not over 1. Some need an even lower TSH than 0,5.
Do I need T3 medication?
If your FT4 is high in reference, but your FT3 is under mid range. Then you need some T3. You can see how badly or good you convert by dividing the FT3 number with FT4. If FT4 is 19 pmol/L(1,47 ng/dl) and FT3 is 5pmol/L (3,2 pg/ml), then your FT3/FT4 ratio is 0,26. That is an ok converter. But if your number is 0,24 or below, you are a poor converter. And you will probably need some T3, either synthetic T3 medicine or NDT (thyroid).
But by now you have been sick for a while, and you will be able to figure things out. And you can read about it here, Optimal thyroid levels
Levothyroxine and Synthroid, these are the most common, and cheapest T4 mediations. Some get side effects from them. Aches and pains, tiredness.
Tirosint is another T4 medicine. It has only 2 fillers, and many do better on it than on the other two.
Cytomel and Liothyronin, Lio are both synthetic T3 .
NDT, Natural Desiccated Thyroid. It’s freeze dried thyroid from either pigs or cattle, porcine or bovine.
Being chronically sick
It’s quite difficult, realizing you have a chronic disease. You don’t just shrug it off and move on. There are many phases. Anger, despair, fear. Lots of emotions.
If you allow yourself to feel what you feel, I believe that is a good thing. It took me many years to get to where I am today. Where I accept that I am not a 100%, but I am still happy and thankful for life. At least sometimes.
I have some tips here, Living with disease