Hypo symptoms on Levo with normal labs

Posted , 8 users are following.

I had goiters that were so large j didn't have a choice but to have my thyroid completely removed. I wasn't hypo or hyper and when they biopsied it they didn't find cancer. My TT was on 1/4/16. I've been on 150 mcg of Levo since the surgery. For the first 7-10 after I felt great. But then not so great ever since. Sweating on and off, occasional joint pain, muscle aches, a few times burning muscles, tired no matter how much sleep I get, light headedness, etc. I get bouts of energy but they're short lived and I always pay the price at the end. I had to leave a family function because I could no longer stand. My knees started to buckle. If I don't get 10 hours of sleep I almost can't function that day. I can't make it through the grocery store so I can only do small shopping trips. I haven't been able to go back to work.

I can't find a doctor willing to look into this. One told me to get a sleep apnea test, then he ordered a TSH, free T3, and free T4 test by they were all in the normal range so he said he wouldn't do anything. Then I started gaining weight to the tune of 1 lb a day so he said he'd decrease the dose to 100 mcg which I said no to. Fortunately the weight gain stopped. I went to another doctor who told me TSH I as the only number that counted and it was normal so she said I was fine and just to give it more time. She couldn't believe I wasn't back at work.

I went back to the first doctor to see if he would order addition al tests specifically a Reverse T3 and they don't know what a Reverse T3 test is. My primary care doctor referred me to get another doctor but again he only cares about the TSH. I don't know what to do. Is it the Levo? Should I try something else? How do I find a doctor willing to test further, possibly prescribe Cyromel to see if that alleviates the symptoms. I suspect I'm not converting T3 correctly. I have a history of liver damage although after being on meds my last liver function test showed it was fine. Can anyone help me?!?

3 likes, 90 replies

90 Replies

Prev Next
  • Posted

    So apparently I'm hyperthyroid but my adrenal glands are producing so much cortisol to counteract that I'm having hypo symptoms. At any rate the doctor is switching me to 100 mcg of Synthroid. So I will have to wait and see what that does.
    • Posted

      Jen, I'd be cautious about the  hyperthyroidism diagnosis. Often times with hypothyroid disease, you get periods of hyperthyroidism. What happens as the thyroid gland poops out, is that it often sputters, producing irregular amounts of thyroxin, resulting in both hyper and hypo symptoms. If a cyst develops, it develops as the body's way to compensate for hypothyroidism. Cysts often have more insulin receptors and get stimulated by insulin to produce thyroxin. This bypasses the TSH feedback loop and can result in hyper symptoms, but is really the body trying to compensate for low thyroid. In this case, the disease is more advanced, and the TSH has also pooped out and doesn't spike in blood work. Finally, the cysts are irregular cells in the body's effort to adapt, and the cysts have a tendency to make defective "junk", thyroxin, whatever, that can be toxic to the body. So if your body is hyper because of a cyst or goiter, you really need to be treated for hypo, because the cyst will continue to grow if not treated for hypothyroidism. A continually growing cyst will generally lead to thyroid cancer. See how this progression works?

      Theres a a simple way to get a feel of whether you are truly hyperthyroid. Hyperthyroidism causes tissue behind the eyes to build up, resulting in the eyes pushing forward over a prolonged time period. People with prolonged hypothyroid generally have sunken eyes. 

      Also, hypothyroidism can cause the adrenals to overwork, in an effort to "make up"  for the low thyroxin levels. You'll still need to treat the adrenals. There are a lot of good herbs for adrenal treatment, and this can be resolved in a few months. But to avoid repeat adrenal exhaustion, the hypothyroidism needs to be treated. To be honest, I haven't heard of how hyperthyroidism affects adrenal function. 

      Hope that helps.

    • Posted

      Thank you MtViewCatherine but that post was from 2 months ago. I do not have a thyroid and I never had cysts nor was I ever diagnosed with a hypothyroid disease. But in this case my doctors ran several different blood work panels and I was very clearly hyperthyroid. Not to mention the heart palpitations and almost passing out everytime I'd walk up the stairs. But shortly after I posted that I switched to Thyro Gold and was hyperthyroid at 300 mg. So I'm now on 150 mg and feeling much better. I have more blood work to run in 3 weeks so I will know better then but for now I'm feeling better. He's not ruling out an underlying medical condition either but needs the meds to get right first.
  • Posted

    Hi,  I have also been taking Levo for a couple of years due to an over active thyroid, my Dr suggested stopping mine as it can cause oestoporosis using long term.   I am now awaiting treatment, either radiotheraphy or an op to remove part my thyroid.  I also had terrible aches and muscle pain, I wake in the mornings and have to literally roll out of bed as I cannot use my arms, my back, neck, shins ache, headaches too. I have only been off Levo for a couple of weeks and my arms feel alot better altho my back still aches. I am told that once I have my op or the treatment I will have to take thyroxine prob for life not Levo and  I am also that sometimes  you develop an under active thyroid (great!!), I am only petite now.  I have been having blood tests every month monitoring my thyroid since I developed it and will have to carry on so in the future
    • Posted

      Yes that is all correct. You will be on hormone replacement for the rest of your life. You will also have to take regular blood draws in the beginning while they figure out the best dosage. I've read people can gain anywhere from 20-75 lbs and have read complaint after complaint about it. I weigh myself daily and have not gained anything. It's been 2 months. I'm not petite, I'm clinically overweight so I couldn't afford to gain anything. And thankfully I haven't. But I've had all the signs that you're having and then some. I'd also start taking your temp every morning. Mine got down to 96.1. The odd thing with me is that I have mostly hypo symptoms but I'm hyper. So be careful of that. The other thing is after your surgery if you don't feel good and by not feel good I mean can't function then don't let the doctors tell you to give it time. That's what they like to do and time could make it worse. In my case I'm heart palpitations and muscle and joint aches. I can't walk up stairs or get through the grocery store. My arms get tired just holding the steering wheel to drive. So I kept pushing my doctor to run blood work, to adjust the meds. And he did. I also got a second opinion and looked into other doctors. Don't be afraid to do that too. If I had the money I'd go to a hormone replacement doctor. They're fantastic. But they don't take insurance and cost a lot of out of pocket money. All I can say is be proactive and prepared. It's been 2 months and I still haven't been able to go back to work. I'm still having issues but my doctor is working with me and that's about all I can ask for. Hang in there!
    • Posted

      Regarding your first sentence, YOU SHOULD NOT BE TAKING LEVO FOR AN OVER ACTIVE THYROID, YOU TAKE THAT FOR AN UNDER ACTIVE THYROID!

      ​Before you consider removing or killing your thyroid, try carbimzole or methimazole - or some other med in that family.

      Perhaps this is a stretch since I don't know your situation or your doctor but I would also look for another doctor since the one you have has made a terrible error. At least get a second oppinion with an Endocrinologist (and even they aren't very good at thyroid issues).

    • Posted

      Good advice LAH! I only have experience with after the thyroid is removed, not before. Thank you for catching that.
    • Posted

      Hi Jen, yes, I too had a total thyriodectomy and was on Levo for a while and then NDT. My cat on the other hand, has an overactive thyroid! She takes carimzole to slow her down and put on a little more weight.
    • Posted

      I don't know what I'd do with a pet that's going through this. This has been a terrible experience. I do applaud you for taking such good care of your cat. Most people would ditch their cat at the shelter or euthanize. My cats don't take pills well so I don't know how you do it but high five lol
  • Posted

    Well I started Thyro Gold this morning. I'm going to start tracking my basal body temp and basal heart rate along with symptoms. I started at the lowest dose and will be that for 2 weeks and then increase by 150 mg every 2 weeks until I notice an increase in basal heart rate and temp and notice an uptick in hyper symptoms. Then I'll back down a dose and consider that the dose I need. See what that does for me. Keep having blood draws until it's normal and stays that way. I had a physical through work last week and despite stopping hormones for a few days and a decreased dose of meds my T4 was still way too high (that was the only hormone test they ran). So I stopped taking hormones for a few days again and then started the Thyro Gold. I just think I'll respond better on that. I started feeling better today. Not having as many issues with heart palpitations and light headedness. I'm actually able to finally start doing things around my house. So I'm hoping I can go back to work next week. I have noticed slight weight gain (2 lbs) so I can tell I'm coming down off my hyper symptoms finally. Took just under 17 days and about 5 days of not taking any hormones to get there though. Will

    Keep everyone posted.

  • Posted

    Hi Jen, Your situation is typical.

    I'll try to add something new to the siscussion,beased on my experience,  as it is a lot of work to care for hypothyroidism.

    The t hings I've found super helpful:

    acupuncture

    liver cleansing

    colon cleansing

    boron/borax supplementation

    Chiropractic

    OTC organic thyroid glandular medication

    gluten-free diet

    I've found liver cleansing to be a lifesaver, and feel like it has really helped mediate the effects of the hypothyroidism. If the thyroid is low, metabolism is low, and the liver becomes sluggish, resulting in toxin stores. You can seehow this would reduce your T4 to T3 conversion. Since T4 to T3 conversion happens largely in the intestine and liver, its important to keep these systems healthy. Cleansing and clean organic, grain-free diet help.

    I have a cyst, it had been a compound cyst with calcification and soft mass. After years of trial and error without success, I was able to get rid of the calcified portion using boron supplementation in combination with non-local acupuncture treatment.

    Extensive acupuncture has indicated treatment of the intestin and heart are the most effective in treating the thyroid. Needles diectly into the thyroid were the least effective method. The point being that although your thyroid has been completely removed, the problems in the rest of the body that caused the growth, likely still exist.  For example, with a car, if you have too much oil your gaskets will blow, too little and your engine block will crack. You can remove and replace the enginbe block and head gaskets but until you get the oil regulated, proper input and working oil pump, it doesn't matter how many times you fix the engine block or head gasket, the car won't work properly.  So you'll need to take a holistic approach and troubleshoot the whole body.

    For myself, I found acupunctuire to be the best maintenance treatment, so that while I'm trying to get the meds right, my body is supported. I still have my thyroid, and the meds have never been right on any medication for me. The best I've found is a non prescription organic glandular.

    After some research, I found that it is likely that the iregular cells in the thyroid may have a higher number of insulin receptor sites, which means that thyroid function can be influenced and controlled by insulin. You can see how this would really mess with the bloodwork and your TSH levels would not show up as particulalry unusual, because the TSH isn't the only thing stimulating thyroxin productioin. This may give you an idea of what was going on with your thyoid prior to your surgery and why your bloodwork does not make sense with how you feel.

    So its moot to try and use your TSH as an indicator, since it was never a good indicator for you, and now it doesn't have any effect on thyroid  production.

    The other thing to look at is neck and head health. If you have been in car accidents or have had head injuries, the neck and cranium positioning can hinder brain signals, incuding those from the pituitary gland, such as TSH and other endocrine system signals. You'll typically get migrain headaches if this is the case, due to the old injuries and the buildup of signals as the brain keeps producing chemicals that can't properly get throuigh a misaligned spine.

    I mention this because I recently had a treatment where the chirorpractor adjusted my cranium and it felt ike a miracle, as the migraines disappeared and my body started functing better.

    Lastly, I have a sort of go-to herbal remedy (frankinsence) that I use as a general support, along with vitamin and mineral supplements. I take coblimated B vitamin because not everyone can process the regular ones- this seems to be genetic, and has been linked to thyroid disease and celiac's.

    Lastly, if you've had head and neck injuries, or your thyroid function has been compromised for any perios of time, you'll need to support your adrenals with acupuncture and herbs.

    I will be honest with you that even with the best practitioners, the western approach for this disease has been ineffective and inadequate, allowing the problem to persist and result in whole body melt-down.

     

    • Posted

      There's no telling what caused the nodules to begin with but my thyroid was functioning fine and I felt fine. All of this came other stuff came about once I had the thyroid removed. But the doctor, instead of starting me out in the smallest dose and seeing how it needed to be adjusted, he started me out on the highest dose. He wanted to adjust it when my symptoms became severe but a second opinion doctor said to leave it alone for a few more weeks. Come to find out he was over medicating me. So I had a super high dose of hormones making me hyperthyroid not hypo. But I had hypo symptoms presumably because my adrenal glands were working overtime and producing a high level of cortisol to counteract the stress the hormone overage was causing. My blood work showed high cortisol. My last set of blood work showed numbers through the roof. So I stopped taking all hormones for a few days and then started back at a much lower dose. I still didn't feel right and my numbers weren't coming down fast enough so I again stopped taking all hormones and now I'm on natural hormones. I've responded much better to that. It's only been a week on the natural hormones but I'm doing pretty good with the addition of T3 and the other hormones T2 and T1 as well as the calcitonin. I'm on adrenal support herbal supplements as well as a slew of dietary supplements. And I'm on Metformin for my insulin resistance. So I've not had any blood sugar issues in quite awhile. So right now I'm doing pretty well. The poor way I feel now is because I haven't been active in over 2 months. So I'm basically having to build all that back up.
  • Posted

    Jen, it sounds like you're doing things right. Unfortunately, what you're experiencing is typical. Keep up the good work, and I hope you're feeling better soon!
    • Posted

      Thank you Catherine! I had no idea how many people were like me until I researched it. It was the advice of others that got me on natural hormones. Some people just don't do well on the synthetics. I know people who do but I've found many who don't. Thank you for the support!
  • Posted

    I have had very similar symptoms while on Levothyroxin I have now discovered that I have an adverse reaction to the drug which is synthetic.   I am hoping to go onto NDT's Natural Desicated Thyroid which is made of pig glands and not synthetic.   NDT's have good reports of having less side effects.   I have had to reaseach this myself online and Thyroid UK has been very informative with this.   I am waiting to hear now if my GP will prescribe it for me on a Special Prescrition.I have had to look around for the cheapest as prices vary a lot.   Thyroid UK have a list of Registered Pharmacies who provide them, you can also get them on private prescriptions.   I hope you find an answer as living like this, as I well know is not nice.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.