hypothyroid, possible hashi, worse on levo

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Unsure how I can proceed. My dr is currently waiting on my endo appt beginning of May. I'm on sick leave since January. I started on levo and have upped dosage to 50mcg in the last month. Dr says it takes time for the system to adjust. New symptoms: insomnia, depression, shaky, sweats, palpatations. Dr says since I've no nodules I do not have hashi even though my blood test says 360 antibodies.

What to ask my endo?

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  • Posted

    Hello Mary:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease since 1987.

    Hashi's is autoimmune and can run in families and also come from a nasty Virus called Epstein-Barr (EBV) or MONO.  EBV lays dormant and then is triggered later in some people.

    Antibodies higher than 10 indicates Hashi's and it is a form of Hypothyroidism. It hits women more then men. 9 women to every 1 man.

    Hashi's can make LEVO hard to work.  I had trouble with it.  I was on Armour thyroid a natural thyroid med. for a long time.

    Levo is a synthetic med.  It must convert in the gland to T3 and some of us have trouble with that.  Most people are on 75mcg to 125mcg of Levo.  Low doses of 25mcg to 50mcg are starter doses to get your body used to it and not to shock your body with a big dose.  the body can take 6 to 12 weeks to make a proper blood level.  Then in about 2 to 3 months they do more blood and see how you are doing.  take  levoon an empty stomach and wait 1 hour before food.  Food blocks Levo from working.

    You should be on a multivitamin with Iron as Ferritin is needed to make Levo work well.  Ferritin is a component of Iron.

    Someof us with Hashi's can swing between Hyper and Hypo and it sounds like you have some swings going on.  As the body gets a level it will get better. In time the bad symptoms will fade.

    Any questions just ask,


    • Posted

      Thank u so much for that info. I find with my brain fog i dont retain much but u made it v clear.

      Is it normal my dr tells me i dont have hashis even tho my blood yest is at 360? He says no nodules no hashis...but for me it doesnt make sense.

      Is it normal to be on sick leave from work during all this time? My dr tells me i'm v sensitive to the med. I feel bad about myself so it'd be good to know its OK to be out sick. My job requires 100% on-the-ball and i can barely cope with my 3 young kixs. Today i felt panicky and anxiety when my 3yr old threw a tantrum!

      I'm in France...levo treatment seems the norm. They dont check vits etc. What are the most important vits besides zinc, vit d? I've read calcium levels should be checked. True?

      What exact tests should the endo do? Blood test before appt is only for tsh. I feel i need to prepare all questions on paper so any advice most welcome.

    • Posted

      Hello Mary:

      Antibodies should be low or near ZERO.  Once they are high it normally means Hashimoto's Thyroid disease.

      See an ENDOCRINOLOGIST who knows the difference.  Some GP's are not that good on the thyroid.

      Yes, please have a calcium level and a mineral panel to include, potassium, sodium, calcium, magnesium, zinc,  Iron, ferritin,  VIT B-12 and Vit D.

      Ferritin is a component of Iron and when you take Levo you must have ferritin above 70+ and most of us are low in that.  Calcium is made by small little glands that sit on the corners of the thyroid and they are called the parathyroid glands.

      Thyroid disease hits ages 20 to 45 and also after pregnancy or menopause. It can skip a generation and you should see if anyone has it in your family and tell the doctor.  I had to become a detective an find it in my family.

      Some other thyroid disease can come from a lack of iodine in the diet or from Diabetes or cancer.  However this is rare, and autoimmune is very common to happen.

      People with Hypothyroidism, can not take loud noises and screaming and kids will do that. Toddlers are hard to control. Also barking dogs!

      Ask for T3, T4 free T4 and Free T3 TSH and the minerals & vitamins above.

      Some people can't function well when Hypo and some need disability until they get the medication level right inside of you.  So YES, it is normal to not be able to work.

      Keep me posted on how it goes.


    • Posted

      Hi Shelly,

      thank you so much for that. My mother suffers from hypothyroid (dr tells her borderline but she's on 175mcg daily, gets checked maybe once a year, has never heard of Hashimoto).

      Can you tell me the difference between T3 and T4 and free T3 and free T4? I tried to google it but its all very complex. Seems that all I was ever tested for was Tsh, free T3 and free T4.

      Lately I've also come out with tiny dust mite-like hives and wonder could it be connected to Levo?

      Is it normal for the falling out hair to actually get worse rather than improve? It seems like its worse now than before.

      Should selenium levels be checked?

      What about gluten allergy or intolerence? I've read that if you've Hashimotos then going gluten-free really makes a difference.

      What about A1 casein allergy?


    • Posted

      Hello Mary:

      Hives is a fine rash that is reddish and can itch.  It can be an allergic reaction to a food or medication (levo).  If it gets worse call the doctor or go to an A&E or ER facility.  Also if you can't breathe, never wait!

      Hashimoto's is named after a Japanese Doctor who discovered it while working in Germany and he noticed an autoimmune condition.  The same with Graves.  The way they honor doctors who discover something is to place their name on it. 

      However, Hashimoto's disease is a form of HYPOTHYROIDISM.  The general category is Hypothyroidism.  This form of thyroid condition has been around for a long time and unless you know someone or are a doctor or nurse, you may never hear about it.

      Hypothyroidism can have different forms some are related to a lack of iodine in the diet, some are congential or you are born with it, some are  mild/borderline and can be brought on by another condition like Lupus or Diabetes.  Hashi's is just 1 form of it.

      Hashi's causes normal protein "friendly" antibodies to go on attack mode and they think that a few things cause this. First is Epstein-Barr Virus also called MONO.  Second is family DNA, runs in your family and third is bad lifestyle drug use, stress, & abuse. Fourth is Gluten.  Gluten is now looked at as a reason these antibodies go haywire!  This is a recent study.

      Yes, my hair fell out also back in 1987, it did grow back but took almost 6 months to 1 year.

      T3 & T4:  T3 is Liothyronine a useable hormone in the body that is produced by the thyroid.  This is the hormone that gives your body energy.  T4 is called Thyroxine and is converted by the thyroid into T3.

      The body needs T3 more. The above are just tests for each hormone only to see a basic level.  It is complicated, I know, LOL.

      FT4 and FT3 ARE  FREE in your blood stream and considered the useable amount in the body that is available for use.

      The thyroid makes 4 hormones in total  T1, T2, T3 and T4.  All of them do different things in the body. However the ones our bodies really use on a daily basis is T3 and T4 and the FREE amounts in our bloodstream.

      Reverse T3  (RT3) is the extra amount not being used and is dumped by the liver.  Some people can have too much and the body will eliminate it.  This test is for people not using FT3  well enough and to see how much is going out and the effect on the body.

      Some doctors who are not as educated in thyroid issues only order T4 and TSH and do not know the benefit of other tests.  An Endocrinologist who knows and does only gland work will know about these tests.

      Selenium can be checked and is a good idea to see how all the minerals and vitamins are doing in the body.

      I hope this helps you,



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