0.01 TSH, 0.7 Free T4, 4.5 Free T3 HELP!!!! I feel horrible!

What does this mean? My GP has no idea what to do and won't refer me to and endo. I'm looking for a new Dr but in the meantime I need help. I was diagnosed with hypothyroidism. My daughter was just diagnosed as well. I'm 39. My previous labs were TSH 0.01, Free T4 0.9, Free T3 3.4 My GP just raised my thyroxine to 150 and cytomel to 50! I have symptoms of hypo, not hyper but I am sooo exhausted and short of breath, can't fight infections, lump in throat, insane inflammation, on and on. My kids feel the same way. We take tegretol also. I just don't know how to keep going like this. Someone please help! Please!

26 Replies

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  • Hi sparemenow, welcome to the forum.

    Before anybody is able to comment, they need the range to your results. The numbers alone mean nothing.

    And, any other details you can give us. For example, how do you take your thyroid hormone? On an empty stomach, leaving an hour before eating or drinking anything other than water? And leaving at least two hours before taking your tegretol? What time of day do you have your labs done? Do you fast and leave 12 hours between the last dose of T3 and the blood draw? Are you on any other medication or supplements? All the little details are important. :)

  • Hi greygoose ty for the response. The value ranges are TSH 0.4-4.5, T4 0.8-1.8, T3 2.3-4.2

    I take my T4 and T3 at the same time with water and at least an hour before taking anything else or eating. I take Adderall 3 times a day and tegretol at night. I do my blood draws fasting and usually mid morning between 10-12.

  • OK, so your FT3 is now slightly over-range, and the FT4 is below range. But it's not surprising that the FT4 is below range, given the amount of T3 you're taking. The body doesn't hang on to more than it needs.

    Have you tried reducing your dose of T3 slightly? Being over-medicated can make you feel tired, too.

    I do wonder if that huge dose of levo is really necessary. You'll probably be peeing most of it out. But, the danger is that it could be converting to rT3. Do you know how well you were converting before you started taking T3?

    As eljii suggests, you really need to have other tests done :

    TPOab

    TgAB

    vit d

    vit B12

    folate

    ferritin

    If you get all these done, you'll have a better idea of what's going on.

  • Hi sparemenow.

    Sorry you are feeling so awful. I had to look up Tegretol. People may be more familiar with the generic name; carbamapazine.

    Looking up on Drugs.com there is a wealth of contra-indications and "heads up" including those under thyroid replacement medication (namely levothyroxine).

    Under the drug interaction remarks is this, and I quote:

    Using carBAMazepine together with levothyroxine can decrease the effects of levothyroxine. This can cause fatigue, weight gain, constipation, and low blood pressure. Talk with your doctor before using carBAMazepine while you are using levothyroxine. You may need a dose adjustment and may need to check your thyroid levels more often. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

    Do you have the full lab results including the ranges (given in brackets) this is because different labs have different criteria. If you can post them it gives a clearer picture to comment on.

    I am not a doctor but please do not stop taking your Tegretol until you have thrashed this out with your GP. It is possible that he is not realising a possible drug interaction going on here. It has happened to me (on a completely different medical matter) and I had to query it with the GP before he realised the boo-boo.

    I know it can be difficult speaking and getting appointments with the doctor so in the meantime you could ask a pharmacist, they generally know a bit more about pharmaceutical interactions than the doctors anyway.

    This is only what stood out for me and as I said I'm not a doctor but I did work as a dispensing technician back in the days of the dinosaur!

  • My GP refuses to do TPOab and TGab. I don't have the values but my GP said my ferritin and iron are low. He hasn't tested my B12. I can't tolerate Deplin and Cerefolin made no difference though I tested negative for MTHFR mutation though both of my children have it. (They have different dads so weird.)

  • There are several other mutations besides MTHFR which could impact your folate and B12 numbers.

    Deplin and Cerefolin may be too strong for you. Depending on your folate level you may need 400mcg to 5g of 5-methyltetrahydrofolate. You might try starting at 1mg.

    But, before doing so, take some B12 which is the next step in the methylation process. Taking folate without enough B12 causes a bottleneck with the folate backed up. Not good.

    You can take quite a lot of B12 without a problem, but too much or too little folate is a problem. You might need B6, B2, and/or magnesium.

    Finding the right dose for you will make you feel better

  • Thank you! I desperately need to figure this out for me and my kids.

  • You are quite welcome. You might try doing a Genova Diagnostics NutrEval test. It's invaluable in fine-tuning how much you need if which nutrients. Their website has a sample test. We do them once a year for my family members. Though each of us varies genetically, we do have some family patterns we can guess with if we want to save money on the test.

    Good luck to you.

  • Thank you! I have some basic genetic testing for my kids already so this will help. There's clearly missing links that need addressed. It's so obvious in how we respond to different supplements and medications but when I've mentioned this to my Drs they act like I'm crazy but it's plain as day. My kids see a hematologist at the end of the week at Denver Children's Hospital. I'm hoping that Dr will understand, especially since my children already have cardiac issues from this all in excess of the many other issues they have. I am checking out the site you suggested!

  • You should find a functional medicine practitioner in your area. I attended a conference last year in your area and know you have some great doctors who understand methylation genetics and supplementation in the Boulder area. PM me if you want to discuss.

  • Do you live in the US?

    If you do you can pay for private blood testing without the involvement of a doctor and get the results sent directly to you. Obviously you then have to find someone who can interpret your tests for you. For some of them, we can help, if you post your results and reference ranges into a new post. I've never looked at the prices so I have no idea how expensive they are.

    To find labs for private testing see part way down this link :

    stopthethyroidmadness.com/r...

  • I agree with humanbean. Only four states prohibit ordering your own labs;RI, NJ, NY & MD. I'm in Florida and plan on ordering labs in a couple of months. Look up Life Extension Foundation. You can order labs through them and I believe they provide an interpretation. Other organizations might also interpret your results.

    It would be easier and better working with a doctor but if you can't find one or, until you find one, having some labs with put you a step ahead.

  • A doctor put me onto Tegratol whilst I was taking levo (T4). I described my symptoms & he thought I was having mini epileptic fits. Many years later I discovered it was extremely low cortisol. Tegratol nearly killed me. There are definitely massive contra indications with these two drugs together. Why does your doctor think you need Tegratol?

  • I agree! I feel like the Tegretol is killing me. I have started backing down. My dr has me on it for mood disorder and seizures but I think the seizures came from something else- a deficiency or something amis. I think the "mood" disorder is from the thyroid and seemingly adrenal issue. I'm in the process of getting a new Dr because I've pointed all of this out to my current one... all the contraindications. He doesn't listen. I wish I could find a good Dr in my area but though I've scoured all the places that suggest Drs, like stopthethyroidmaddness etc., there are none in my area. Thank you for your response. It lets me know that discontinuing the tegretol is the right thing to do.

  • Tegretol depletes folate and B12.

  • Believe me - you will not find a doctor anywhere who will listen to you. In my experience very few endo's too. When my partner realised the implications of Tegratol with thyroid med, he threatened the doctor who prescribed it with negligence. The only way I regained my health was to take matters into my own hands - 30 years after being diagnosed with very bad hypothyroid. I saw the reknowned Dr P in 1995 who saved me from being bed and wheelchair bound. He changed me from T4 to T3 only, and prescribed a very low dose of hydrocortisone to assist my adrenals to heal. Low thyroid levels for a long time lead the adrenals to suffer. Sadly he disappeared (very sad story), so it took me a lot longer than it should have done to get my health back completely. It's a confusing maze this thyroid stuff, but now this forum is here you need to use it as much as possible. Keep asking questions, there are lots of folk who are happy to help. Best wishes x

  • I'm so sorry for how long you've suffered! It's been 8 years since diagnosis for me, I suspect I've had issues since I was rather young. Everyone in my family does, but it seems to go much deeper genetically. Stroke, diabetes, cardiac issues, etc. No one is looking into it but me. I want to save my kids from what I've been through. I've been bed bound for large stretches. I feel I am close to loosing the battle. I'm so confused by how to proceed and treat this myself. This forum is amazing and gives me hope for the first time in a long time! Thank you.

  • It's me again - I've just re-read your bit about mood disorder and seizures, also so exhausted and short of breath. I had all that and it was definitely what is called adrenal insufficiency. The adrenals have to go into overdrive when the thyroid has been low for a long time; you may not have realised your thyroid was low, it can go back years. I realise now my thyroid was a bit low whilst a teenager. So the adrenals have been helping the body whilst the thyroid isn't working fully, then the adrenals get worn out too. That's when the cortisol from the adrenals gets low and gives these symptoms. The seizure symptoms is the cortisol coming out in 'spurts' then dies back again. Doctors and even most endo's do not have a clue. Dr P was a pioneer on this subject because he himself had low thyroid and read old medical papers. I must mention here that this is my own personal story, I am not medically qualified x

  • That's amazing you say that because the seizures have been in spurts over the last 20 years. I have been like this since a teen. My children are teenagers and I've seen this since about age 12 for them both which correlates to what I've been through. All 3 of us can barely breath- using breathing treatments, allergies are out of control, severe fatigue, joint pain, every single symptom of adrenal issues. I wish I knew how to proceed from here, how to try to treat us.

  • This is a difficult one - how to treat you all. All I know is that Dr P told me in 1995 that a pharmacological dose (mini dose) of hydrocortisone would assist my adrenals to heal. In 1995 he prescribed Deltacortril 5mg a day. Deltacortril is a high quality coated tablet, which is a form of steroid. My sister takes steroids for rheumatoid arthritis. I've just googled Deltacortril and it is still available. I have no idea how you can convince a GP or even an endo that is what you need. I will PM you with more details. x

  • Unless you have an amazing doctor, he or she probably won't prescribe it. A functional medicine doc, naturopath, osteopath or even chiropractor, like the late Dr. Lowe, might recommend low dose hydrocortisone cream. I use 1% from drug store, in small amounts, several times a day. No doctor ever looked into my adrenal function, even though I had an episode of mild adrenal insufficiency in 1989, for which I was prescribed, Florinef.

    I now have severe bipolar illness , but years ago, I functioned well; working full time, sleeping good, getting married. Then my bipolar illness, which seemed to be in remission, returned and I began to fall apart mentally & physically. My job was stressful and I ran on adrenaline everyday, though I loved what I did. I believe my adrenals became compromised, which in turn, destroyed my ability to sleep, along with no longer being able to handle stress of any kind. I also began to experience loss of sexual function, which I still am dealing with.

    It's true that one shouldn't self-treat the endocrine system but when your health is failing and you can't find a doctor to listen and one who will work with you, even if they're unsure about direction to go, you either sink or swim. I choose swim, as we all do. Even if I'm going about things wrong, I'm feeling a tiny bit better. If I was getting worse, I'd stop all that I'm doing. I'm at least that smart, lol!

    I'm not in the medical or scientific field. Just an amateur researcher and experimenter. Don't give up, ever! You have one life, so make it the best life you can.

  • Think you need a long chat with your doctor asking some searching questions plus have your answers ready when he misses the point. I'm sure they never check what you are already taking when they prescribe something new but I'm sure in this highly technical world that should work. I have a very bad reaction to one drug but if the pharmacists makes up something for me that will clash alarm bells start up literally!

  • First off the TSH can become suppressed with any sort of thyroxine so don't worry about that!

  • Thank you! It's the T4 I'm really worried about and want to bring up. I can't find anything on how to adjust my meds. Since my T3 is so high I don't know how to raise my T4 without making things worse but I feel terrible as is. I have nearly every symptom of hypothyroidism and adrenal fatigue but some of hyperthyroidism as well. I'm so frustrated and loosing hope. I've seen several gp's but none of them able to help.

  • Sounds like you need to exclude secondary and tertiary cause for your low TSH and low T4. You need to see a hospital specialist in endocrinology. Xx

  • I agree! There's definitely more going on below the surface. I was able to get an appointment next month for one of my children with an endocrinologist at children's hospital. I'm hoping to get my son in as well while waiting to see a new GP for a referral. Hopefully some answers will start to trickle in. Do you know what tests I should be insisting be done? I want to push for everything possible. I'm hoping I can get the kids hematologist to start some of the tests this week. I just don't think things can wait much longer.

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