Really high TSH but normal T4 in bipolar. Help me understand please!

Hey guys, I just got my blood results from a test my shrink ordered because I started getting sporadic and very rare instances of nystagmus. Turns out my TSH Ultrasensitive came back a whopping 47.5 but my free T4 a rather pedestrian 1.08. Could someone help me understand a bit better what could be wrong with me, what treatments could I undergo and what the side effects of those treatments could be. As I mention in the title, I am bipolar II and have to take daily doses of Wellbutrin for depression (150mg), Lamictal for modulator (200mg) and Seroquel for antiphycotic (25mg).


25 Replies

  • I am surprised your doctor didn't give you 50mcg levothyroxine to slowly reduce your TSH level. You are hypothyroid. You should have a blood test every six weeks with a 25mcg increase of levothyroxine until your TSH is 1 or lower. You should have a Free T3 and Free T4 towards the upper part of the range.

    This will all be strange to you as it was to all members when newly diagnosed. It is best if we read, learn which helps us to recover.

    When were you diagnosed as Bipolar as sometimes I think that people may be diagnosed with something that could be a clinical symptom of hypothyroidism. I shall give you a link: to symptoms and tick off the ones you have:

    I know that Bipolar can be treated with liothyronine (T3) and it is T3 alone which is the active thyroid hormone needed in all of our receptor cells as it drives our whole metabolism from head to toe.

    This is a link which will be helpful:

    The two main thyroid hormones are T4 (levothyroxine also known as thyroxine) and T3 (liothyronine). They are replacement hormones not drugs.

    When you have a blood test for your thyroid hormones it should always be the very earliest, fasting and allow a gap of 24 hours between your last dose of thyroxine and the test and take afterwards. This helps to stop doctor reducing hormones unnecessarily.

    Ask GP to test B12, Vitamin D, iron, ferritin and folate as we are usually deficient which also cause clinical symptoms.

    Everything has to be tip-top.

    You take levothyroxine on an empty stomach which is usually when we first get up in the morning and swallow tablet with a full glass of water. Tablet could stick in your throat. You then wait an hour before eating.

  • Hi and thanks for the reply.

    I was diagnosed as bipolar in 2004, so I've been dealing with this for over a decade but had never experienced any nystagmus, which is what led my doctor to order the tests.

    Do you know what it means to have such a high TSH but a normal free T4?

  • Your doctor should have tested for thyroid disease when you presented with bipolar symptoms like Shaws says.

  • Your TSH is high which is hypothyroid. Your T4 seems not to be in the upper part of the range, so it is low = hypo.

    When you get a blood test always get a print-out of the results with the ranges. Ranges are important because labs differ and it makes it easier to respond to questions.

    I think sometimes that blood tests for thyroid hormones aren't taken when we are diagnosed with another problem which could be interconnected as it takes a long time for the TSH to rise sufficiently for a diagnosis to be made.

    I, myself, had quite a few diagnosis but not the correct one and was given prescriptions for symptoms but didn't have a proper diagnosis and hypothyroidism never entered any doctor's head.

  • I have my lab has ranges, I just didn't post them since this is my first time dealing with this stuff. My bad.

    My lab says that the range for FT4 is 0.93-1.7. The range for TSH is 0.271-4.201

  • It's all a new game :) learning about how our metabolism works. We never thought about it before when it worked fine.

    Don't worry too much and it is your TSH which dictates you are hypo as your dose increases so will your T4 and T3. Levothyroxine is T4 and it converts to T3. T3 is the only active thyroid hormone required in our receptor cells which gives our body its energy. Our brain contains the most T3 receptor cells and then the heart.

  • Your doctor is checking how your thyroid is working. According to your results, you have an underactive thyroid known as hypothyroidism. This can be caused by various things so your doctor will want to find out the cause although sometimes the thyroid simply doesn't work very well. Low thyroid can cause various symptoms. You can read about it on the Thyroid UK website which gives lots of good advice. The treatment for hypothyroidism is either to correct the cause if it's caused by medication or something reversible or take Levothyroxine which is a small tablet with synthetic thyroid hormone that corrects the low levels of thyroid hormone.

  • Hi and thanks for the reply.

    I'm a bit confused, why is my thyroid hormone level low if it's so much over the range? I mean, I've been reading and apparently the TSH test should not go over 5 but mine is at 47. What am I missing? Is it one of those cases where if the numbers of the test are high then the actual result is that the level are low?


  • Luigi05,

    When thyroid hormone (T4) is low TSH rises to stimulate the thyroid gland to produce more T4.

  • Yes, your TSH level should NOT be higher than about 4.5. Actually, the TSH level is a pituitary hormone. The pituitary gland tells your thyroid to produce more homone because your body doesn't have enough of it. Therefore, when the TSH level rises it indicates that your thyroid gland is struggling to produce enough hormone to satisfy your body. In other words you don't have enough hormone and are hypothyroid (underactive thyroid). High TSH = not enough thyroid homone (thyroxine).

  • Thanks so much, this makes stuff a lot clearer.

  • TSH is not a thyroid hormone. It is produced by the pituitary gland when your brain feels that there is not enough thyroid hormone (either T4 or T3). Most healthy people have a TSH of around 1.2.

  • Luigi05,

    Do you have the lab ref range for FT4 1.08? Not possible to tell how high/low FT4 is without it but TSH 47.5 is very high. Has your psychiatrist or GP given you a prescription for Levothyroxine?

    Seroquel is known induce hypothyroidism. Scroll down to Hypothyroidism in If your dose of Seroquel is adjusted your thyroid levels should be checked too as Levothyroxine dose may need adjusting. If your hypothyroidism is Seroquel induced and you stop taking Seroquel it is likely your hypothyroidism will reverse.

  • Hey, thanks for your reply.

    My lab says that the range for FT4 is 0.93-1.7. I have never taken or been prescribed any drugs for my condition except psychiatric stuff, and I've been taking this particular cocktail for over 5 years.

    My shrink has considered taking me off this cocktail and just going on Lithium but I've read there's several side effects with that also.

    If I have to take Levothyroxine, then what side effects should I expect?

    Thanks again for taking the time to reply.

  • Luigi05,

    I'm editing my reply as I misread your FT4. FT4 1.08 is within range but is low for TSH to rise so high. I think you will need Levothyroxine while you are taking Seroquel.

    Most people don't have side effects on Levothyroxine but a member had a very bad psychotic experience on Levothyroxine + Quetiapine.

    Lithium is also known to induce hypothyroidism and can elevate liver enzymes. I took Lithium for several years and didn't have any adverse effects. Thyroid and liver function were monitored regularly to be sure.

  • Well I guess I'll just have to wait and see what my doctor says. Thanks so much for all the input, I at least feel like I understand a little about what's going on. I'll let you guys know when I get a concrete medical opinion, maybe we can all learn something from it ;)

  • Luigi05,

    Please re read my reply which I edited.

  • Ok then so it looks like I'm going to have another pill in my daily menu. Could definitely be worse, but I'll go see my doctor and see what he thinks. It seems that when I was prescribed Seroquel I should have been tested for this and monitored. Strange thing is that I don't feel any of the symptoms that are associated with hypo, I feel just fine really except for a very, very rare instance of nystagmus...

  • Luigi05,

    If you are prescribed Levothyroxine for maximum absorption it needs to be taken with water 1 hour before, or 2 hours after, eating & drinking, 2 hours away from other meds and supplements, and 4 hours away from iron, calcium, vitamin D and magnesium.

  • Whoa that's going to be tricky considering I have to take meds when I wake up and when I go to bed, but I guess I'll just have to manage my schedule correctly is all. Thanks for the advice.

  • Luigi05,

    Levothyroxine can be taken any time of day or night.

  • Thank you 4 this post I did not know about the time frames.

    Was told take them all first thing.

    Will follow from now on.


  • You should not get side effects to Levothyroxine hormone which is the active ingredient as it is the same chemical composition as produced by your own thyroid but people can sometimes have a reaction to the fillers (excipients) in the tablets. Also, medicines can have interractions. You should get a patient information leaflet with any tablets you are given which list the possible side effects. If you feel unwell you should go to your doctor or enquire with your pharmacist who is knowledgable about medicines.

  • Hi Luigi05

    I think the culprit is Seroquel, but I am no doctor. I was prescribed Seroquel for sleep in 2014 Nov. Six months after that, I gained 20+kgs (that's a consisten 3.5 kgs a month), became tired, dizzy and all manner of symptoms that pertain to hypothyroidism.

    Anyway, the damage is done. Now you have to fix what the Seroquel did. Of course, I am not a doctor. The manufacturers of Seroquel speak of diabetes being a side effect of Seroquel, but they don't mention hypothyroidism the last time I checked.

    It could be a coincidence but I doubt it. Also, I am not suggesting that you get off your medication, I am just noticing that the same thing happened not just to me, but to many others I know who have been on it. I can't say much about Wellbutrin and Lamictal because I have never taken that before.

    Here is a study of Seroquel inducing Hypothyroidism:

    In my history of being toyed with by medical professionals, Seroquel is by far the worst drug they have ever given to me. It changed my mind, body and soul, leaving me a shell of what I used to be. I am not being dramatic. It's been 2.5 years of hell trying to get my life back together due to it.

    So, now you have another problem, unfortunately. Fortunately, this forum will arm you with knowledge to help yourself.

  • Nystagmus can be caused by low thiamine - also know as thiamin or vitamin B1.

    If low thiamine is the cause then quite high doses of it would be necessary to bring your levels back to a healthy state. Since normal thiamine is water soluble the kidneys will dispose of any excess in the urine. So, you could ask your doctor for a test, pay for a private test, or just supplement anyway since the stuff isn't poisonous.

    There is an alternative to normal thiamine called benfotiamine which is actually fat soluble. If you were to buy that I think that excess thiamine might be stored in the fat. If my understanding is correct then it would be essential to test regularly. But the water-soluble, standard thiamine would not be a problem.

    Please do your own research on this if it interests you. I'm really not confident of my facts.

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