Hypo but with Hyper symtoms

CricketClover
CricketClover Posts: 388 Member
edited November 16 in Social Groups
I was diagnosed with Hashi's in 2011 and started on a 25mcg dose of Synthroid that has been gradually increased to 125mcg. My sister also has Hashi. Most of the time I have more symptoms of hyperthyroid: flushing, heat sensitivity, sweating, diarrhea, fatigue (both), etc. I do have slight weight gain issues (just barely overweight, enough to be frustrating). Has anyone else with Hashi's or HYPOthyroid experienced HYPER symptoms. My recent blood work done last week had a normal T4 but a high TSH, 6.2 so I just don't get it! Any similar experience or advice please :blush:

Replies

  • editorgrrl
    editorgrrl Posts: 7,060 Member
    Hashimoto's is an autoimmune disease, meaning your body is producing antibodies to attack your thyroid. Usually your thyroid responds by not producing enough hormones, but sometimes it reacts by producing too much.

    Your endocrinologist should be testing your levels regularly and adjusting your meds accordingly. Overdose symptoms are exactly the same as hyperthyroidism.
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    Also, since Hashi's is autoimmune, you can swing from hypo to hyper based on when the attacks are happening and how your body is responding. That's one of the reasons that it can be so frustrating to treat, especially with blood tests alone. You also may simply not be responding that well to synthroid. Many of us with Hashi's tend to do better on the natural options -- the natural dessicated thyroid seen in Armour, Nature-throid, etc. It's not clearly understood why, but it may have to do with the fact that the naturals have T3 in addition to T4 as well as T1 and T2 (which they don't know what they do or not).

    Also, you could be having a reaction that is not directly, but indirectly, related to the thyroid.

    Unfortunately, a lot of this is trial and error and can take a while to figure out. Are you taking any other supps? If so, which ones? How are your other numbers -- for your adrenals, blood sugar/insulin, Vitamin D, etc.?
  • CricketClover
    CricketClover Posts: 388 Member
    I have had my Vit D tested once and it was in the normal range but on the low side. I am getting towards the end of the "Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause" book and it has been enlightening.

    I have never had my adrenals, blood sugar etc tested. I did have a celiac antibody test done last week which was negative but I have decided to cut out gluten and then dairy anyway. I just started taking a Dry Vit D with yeast free Selenium and Biotin supplement and I also take RAW Womens Digestive Enzymes with probiotics.

    My sister just went to a "hippy doctor" and she highly suggests that I do as well. We both go to the same endo and are frustrated that nothing is ever really addressed, we never get answers to our questions. They never want to talk about nutrition and are not too eager to test further than the standard T4 test. I haven't had my hashi antibody test done since I was diagnosed! Maybe it is time to shop for a new doc!
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    MKwose -- that is concerning that the doc has never tested your adrenals. If your adrenals need to be functioning properly for the thyroid meds to help -- if they're not, you can even feel worse with thyroid meds. Many women with hashi's have low DHEA -- it's very commonly seen together, likely because the body is trying to compensate for the sluggish/defunct thyroid. Also, not uncommon for us to develop insulin resistance (which can turn into diabetes if it worsens). I had both and was pretty shocked by it as even at my heaviest I was only 30 lbs or so overweight, always in normal sized clothes, etc.

    Plus deficiencies in things like the adrenals, insulin resistance, low Vitamin D, low magensium, etc. can have a LOT of overlapping symptoms -- like difficulty losing or maintaining weight, fatigue, etc. I definitely felt much better after finding a true thyroid specialist that looked for all of these interactions and found much more than just the thyroid. It's been a night-and-day turn around for those of us that aren't lucky enough to have just a wonky thyroid.
  • CricketClover
    CricketClover Posts: 388 Member
    I found a list of recommended thyroid specialist in the Atlanta (where I am) area. It seems like the ones that are the most highly recommended are the progressive/holistic type practices. And of course those places do not accept insurance. Has anyone had any experience going to these types of doctors vs tradition medicine? I know that the naturopath doctor that my sister has seen told her that she had adrenal fatigue but I do not know what the testing method was as it was an instant gratification type test, no blood test and have to wait for results. I just wonder how accurate it can be.

    After reading the Root Cause book it has made me realize that I need to be doing more than just going to the endo every 6 mo, having my blood drawn and then having them up my prescription. That has pretty much been the gist of my Hashi experience so far. It is time for me to start taking control of this before things get really out of hand!
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    edited April 2015
    My recommendation is to go to an MD who focuses on integrative or functional medicine and specializes in thyroid and/or metabolic issues including thyroid. This way you know that they're still legitimate doctors (whether an endo or not) but that they look at things from a much more holistic/integrative and functional view. If the person is still an MD and getting highly recommended in your area for thyroid, that's probably a good place to start.

    I personally go to an MD that focuses on an integrative/functional approach, and yes, unfortunately, he doesn't take insurance. And that's a big bummer. However, depending on your insurance, you still may be entitled to some sort of reimbursement (I've got a PPO and get some reimbursement) or any tests he/she may order may be covered under your insurance just like any other MD would be. My initial visits and testing cost me about $1500 or so out of pocket (some of which I was ultimately able to get reimbursed for).

    As much as that hurt, it was the best $1500 I'd ever spent. I first suspected symptoms 10+ years before and saw a total of 5 different insurance paid docs over the years (3 PCP and 2 endos), and none of them helped. One doc (one of the PCPs) knew something was off, but didn't know what. He recommended me to an endo that ultimately wasn't very helpful -- he only relied on TSH and didn't check for any other the other issues my current doc checked for (thyroid antibodies, adrenal issues with DHEA, cortisol, etc.; liver enzymes, blood sugar/insulin issues, common vitamin deficiencies -- D, magnesium, iron, iodine, etc.). It's pretty upsetting that none of the other previous insurance docs checked for ANY of these issues -- but I've found my story to be a sadly common one. So, the extra out of pocket costs was the best money I personally ever spent -- and I wish could have had 10+ years of crazy making back.
  • CricketClover
    CricketClover Posts: 388 Member
    I have a HDHP PPO so I have to reach my $2000 dec before insurance pays for anything anyway. I do have a HSA that my employer contributes to monthly so maybe I can use that. I have only been with this employer for a month so I don't have much in there yet! I am going do some more research and find someone great to go to.

    Thank you for all your information. I have started to keep a daily journal of everything I eat, meds I take, symptoms, etc. So when I do find someone to see I can show them exactly what went on each day.
  • CricketClover
    CricketClover Posts: 388 Member
    So, an update on this journey. I have yet to find a new doctor but since I was having severe anxiety and basically called my Endo crying and told her all the things I was feeling she said I was having all the same symptoms as her Hyper patients and she was going to lower my dose, plus I asked her put me on Tirosint as I wanted to be free of the additives from Synthroid/Levo.

    Well that was May 1st, and I have yet to take the Tirosint and also have not taken any Synthroid and I feel like a lot of my symptoms have gone away. I know it is dangerous to quit taking it but if I feel better without isn't that a good thing?? I have a follow-up begining of July so I think unless something changes I am going to stay off of it and see where my levels are. Hashimoto's is such a fickle thing isn't it? Maybe I have just having an extended hyper state with it. Also, I have been gluten free for 5 weeks now, so maybe that is contributing. Who knows. Anyone else stop the meds and feel better? If so how long did it last?
  • RedBec7
    RedBec7 Posts: 42 Member
    I have Hashi's. My latest doctor started me on a gluten and soy free diet two months ago. Since then I've been feeling completely stressed out and anxious (work isn't helping with that). I went on the diet to see if gluten and soy were triggering my immune system. Maybe the diet has helped and my thyroid is functioning making me over-medicated (I'm on Armour Thyroid). I've still had hypo symptoms as well but I've lowered my dosage a little bit anyway to see if that helped with the stress and pounding heart. I feel less stressed now but also feel really tired. I was on vacation last week which probably helped with the stress. We'll see what happens now that I'm back at work.
    I had a blood test this morning so we can see if my antibodies are lower. I really don't know what the right thing to do is but stopping the meds altogether is probably not a good idea. I would try lowering your dosage first. Then again if you're feeling good now do whatever you can to keep that going. I know that for me, things fluctuate all the time for no apparent reason. I've rarely felt like a normal person in the last 4.5 years and when I have it doesn't last for long.
    Good luck.
  • CSARdiver
    CSARdiver Posts: 6,252 Member
    mkwrose - Have you ever received a complete hormone analysis? This is a highly subjective field of research, but it appears that you have a competing hormone (RT3 possibly?) With all hormones there is a long delay of activity, so while you may feel a change, the physiological effect will not be experienced for 3-7 days after adjusting meds. What Synthroid dose are you currently on?

    I know a great DO in the Atlanta area - sending you her contact info.
  • CricketClover
    CricketClover Posts: 388 Member
    I have steadily had my dosage increased from 25mcg back in 2011 to 125mcg now. After the severe anxiety, etc. My endo wanted to lower me back down to 112mcg but suggested I not take anything until the anxiety went away so I did that and continued to feel "normal" so that is why I have decided to not take it until I feel bad again.

    CSAR, I will definitely look into the one you sent me, already have googled :) I would love to have other things checked out, when I mentioned such to my endo she said it wasn't really something they did :|
  • CSARdiver
    CSARdiver Posts: 6,252 Member
    edited June 2015
    You may want to work with your doc and review alternating day dosage as a variable to see how your heart responds. This may be driving anxiety or could be driven by it.

    I'm very biased and we had the same gross anatomy professor - thorough isn't a strong enough word to describe her. Hope everything works out and best regards to you and yours.
  • CricketClover
    CricketClover Posts: 388 Member
    So, another update. My endo changed my dose to 100 mcg of Tirosint and I has still just not feeling well taking it, and felt better if I didn't take it for a week (was trying anything to feel better). I went and had my labs done after taking it again for a few weeks and my TSH is 12.14 (range 0.45-4.5), my T4 is 1.06 (range 0.82-1.77, and my T3 is 216 (range 71-180). It is so bizarre that my TSH and my T3 is high and my T4 is normal. She has THANKFULLY! lowered my dose again to 75 mcg and I am definitely feeling a lot better. I have my levels checked again in April, I am curious what they will be.

    Also, she did a scan since it had been a few years since my last one. My nodules had shrunk!
  • allergictodiets
    allergictodiets Posts: 233 Member
    I have Hashi's. I had heart palpitations and panic attacks when I was overmedicated.
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