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Overactive to underactive following radioactive iodine treatment

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Horseyhibbitt
Horseyhibbitt

i was diagnosed with Graves' disease some 6 years ago, 3 years ago I I was given radioactive iodine. I am now underactive and have been signed back to my GP from the endocrinologist. However, They cannot get my medication right, the GP says I must stay at the lower end of normal but I feel so tired, have cramps in my legs, they feel like lead weights, I am constantly putting on weight yet eating less, I have random bruises mostly on my legs. All my life (I'm 54) I've had good energy levels, not buzzing but plenty of stamina, and although I've had to work at it  I've kept a good weight. My dose is 100 daily, my GP is not helpful in helping me feel better and obviously I don't won't to be too high again. I have been taking 125 on a weds and sun, my latest blood test still shows lower end of normal and I still feel rubbish. I'm going to try 125 mon, weds, fri and see what happens - does anyone else take their meds in this way?  Have also started to think I am intolerant to bread and a few other things and am seeing a kinesiology later this week to see if they can identify what. 

1 like, 44 replies

44 Replies

  • mags1909
    mags1909 Horseyhibbitt

    Posted

    Hello, I also have Graves Disease and I also had the radioactive iodine treatment, something I now deeply regret, because like you, I cannot lose weight and now feel worse. My blood tests show I am at the lower end of normal, but I have had to be taken off all the Thyroid Medication because it was making me worse. My blood results were lower with the medication than without! If someone can explain that one to me I would be grateful.Like you i also feel I am intolerant to bread, my stomach just bloats. I am now on two replacement shakes and a salad for my evening meal, still no weight loss, but at least I am not gaining.   The consultant at my local hospital was less than useless. My doctor is now testing me for everything else to see why I am so tired all the time and I am now waiting to go for a sleep apnoea test. I am sure it not this, but my thyroid. I am now thinking about trying to find a private doctor who specialises in Graves Disease as I am so desperate to find out some answers to my problems. Good Luck seeing the kinesiology and I do hope you find a solution. 
    • mjaxx
      mjaxx mags1909

      Posted

      If you react badly to thyroid hormone, or still don't feel well when the levels are in the top of the normal range, you may have adrenal insufficiency. This is more common in people with Hashimoto's or Graves disease because it can be caused by an autoimmune process like these two thyroid conditions. Having one autoimmune disease, especially of the thyroid, increases the chances of having autoimmunity elsewhere.

      If you do have adrenal insufficiency, this will result in tiredness, sleep problems, the inability to cope with stress, dizziness when standing up, immune problems, food and chemical intolerances, and can also cause pain and weakness within joints, muscles, and connective tissue. All of these symptoms are due to deficiencies in two hormones called aldosterone and cortisol, and this is always corrected before thyroid hormone is started when the condition is known. Your body can't cope with or use thyroid hormone properly without adequate adrenal hormones because the two glands function together.

    • mags1909
      mags1909 mjaxx

      Posted

      Hello, Thank you for the information, I will ask my doctor if he will check this out for me. 
  • barbara98940
    barbara98940 Horseyhibbitt

    Posted

    Hi, are you aware you can chop thyroxine tablets up? Have you thought about taking 112.5mcg daily? I found I was very sensitive to uncreases / decreases in thyroxine. So I increased / decreased by 6.25mcg (a quarter of a tablet) at a time every 2-3 days). Maybe this will help.
  • PRthyroid
    PRthyroid Horseyhibbitt

    Posted

    I also had RAI after having Graves. I've been Hypothyroid now for about over a year now. I first started out taking synthetic Levothyroxine. I felt horrible taking it for a few months. My problems only seemed to get worst. I researched and had my doctor do more bloodwork. My Endocrin Doc wasnt' keeping on top of my bloodwork and they let my Vitamin D and Iron get too too low.

    I got fed up and changed to a Holistic doctor. She prescribed me Armour thryoid meds (a dessicated thyroid mediction). Since taking it I felt so much more better as well as keeping on top of all the minerals in my bloodwork.

    I felt good for a few months but started to get joint pain again and some headaches. I started to noticed I was havin an Intolerance to gluten and lactose. After that, I decided to clean up my diet and avoided everything gluen, lactose, and soy. It's going on a few months since I started that and I have to say I feel like normal again. I don't really have any more problems.

    So my advice would be maybe try a different type of thryiod med if you're feeling this current one you're on isn't working for you. Some people's body can't not take  synthetic Levothryoine cause some can't just make T3 just from T4 only. Meds like Armour thyoid and other dessicated thyroid medictions have more then just T4, which helps the body alot easier.

    Also I would try and avoid everything gluten and lactose for a few months and see if that helps you feel better as well.

    Also make sure you cut out stress and check your blood sugar. Stress can cause the adrendals to over work, thus effecting your thyroids ability to work properily.

    Hope that helps. Hope you feel better.

    • mags1909
      mags1909 PRthyroid

      Posted

      Hi, I read with interest your reply to Horsehibbitt, Can I ask you where you found your Holistic Doctor?

       

    • barbara98940
      barbara98940 mags1909

      Posted

      Sorry for the confusion, I meant PRThyroid's message that kept getting moderated.
    • PRthyroid
      PRthyroid mags1909

      Posted

      Hi Mags,

      I had to research online Holistic Doctors in my area. Once I found a few, I called each one and asked if they specialized in Thyroid optimization. Sadly I only found like one that was very close that did thyroid optimization. I know some people have to travel far to get to a good one. But they're better then Endocrin doctors in my opinion.

  • mjaxx
    mjaxx Horseyhibbitt

    Posted

    You may want to discuss with your GP why they would prefer to keep you at the lower end of the normal range. If there is surviving thyroid tissue, they may be worried if they dose you too high and the thyroid becomes active again that it will result in hyperthyroidism, and keeping your levels lower will help guard against this.

    In any case, there's no reason you should have to live with this if you're not feeling as well as you could. Once you know why they won't dose you higher, you can discuss options to resolve this and then increase the dose when the risk is eliminated.

    Any increase in dosage usually takes at least 2 weeks for the body to adjust and blood levels to become stable, so it may take a few weeks after increasing the dosage before you know how you are reacting to the new dose. If taking more thyroxine doesn't seem to help, you may also want to discuss with your GP to add T3 or switch to dessicated thyroid that contains both T4 and T3. Some people are less responsive or non-responsive to T4 alone because it needs to be converted into T3 to work properly. Age and other factors can reduce conversion.

    • Horseyhibbitt
      Horseyhibbitt mjaxx

      Posted

      Thank you thank you for the extra info, I will discuss that with my doctor
  • shellyC19
    shellyC19 Horseyhibbitt

    Posted

    Hello Horsey:

    My name is Shelly and I am a nurse in The USA. I also have  Hashimoto's thyroid disease since 1987. i am 54 also.

    RAI was designed to kill off cancer of the thyroid and not as a treatment for Hyperthyroiism.

    It should have been carefully explained that you would be Hypo for life.  the thyroid does not grow back!  RAI is often misused. It is a bad way to treat Hyperthyroidism.

    Now about Levo, it is darn hard to regulate it as it was designed for people WITH A THYROID, and it can take a lot longer for it to work as your liver and bowels and other organs will have to absorb it and it can take time and adjustments to make it work.

    Your ferritin needs to be 70+ and that will help it work better.  You may need a mixture of 100mcg 4 days a week and then 125mcg the other days. It does not come in 110mcg or 120mcg, so you need to play around with it.  Some people need to do this to get a better level.  Try it out.

    Other people need a NDT like Armour thyroid. It is made from a pig's gland which is very close to our human one. It works better on some people.

    All of your symptoms are of Hypo, and once you find the right dose, your bad symptoms will fade away.  The trick is the right med for you!

    Keep me posted on how you do, any questions just ask,

    Shelly

     

    • Horseyhibbitt
      Horseyhibbitt shellyC19

      Posted

      Thank you for your reply, I have lots of questions for my GP. It's a relief to know my symptoms are related, I just need the GP to take me seriously! I will keep you posted x
    • denisemoore
      denisemoore shellyC19

      Posted

      Hello I am in Dallas Texas, Im on nature thyroid 1 grain tablet / I was just told that this dosage is best for me. I feel better mentally on nature thyroid tablets but I am still feeling leg,back and foot pain when I walk. Its very hard for me to walk. Makes me feel like one day I may not be able to walk since my doctor feels this is the closest they can get me to feeling better. I have a child with autism that I must walk for that is 4 years old. I feel Im fighting for both our lives at this point. Please help me. any suggestions on what to do next. I have been fighting this battle 11 years.
    • denisemoore
      denisemoore

      Posted

      I also feel very tired and sluggish as others but not as near close to tired as I was use to on synthroid. That was like poisen in my system.
    • shellyC19
      shellyC19 denisemoore

      Posted

      Hello Denisemoore:

      Nature's thyroid is a good medication. 1 grain is 60mg and is a low dose and most people need about 1 and 1/2 grains daily.  So you can ask the doctor to up the dose or try it yourself and see if you feel better.  The body will adjust to the new dose and the muscle aches and tired feelings will subside.  Normally 1 grain tablets are a starter dose.

      Also have a B-12 level checked and Ferritin & iron levels, as these can be low in thyroid patients and if able take a good multivitamin with Iron and take it 4 hours after your thyroid or with a lunch meal.  Low iron will also make you sleepy and feel bad.  Another thing is VIT D.  It can make your body ache and cause you to feel as if you were 100.  A blood level can be checked and I recommend that also.

      Make sure all thyroid meds are taken on an empty stomach so food will not block it.

      Have the doctor check blood cortisol levels.  Some of us can get too much adrenal hormone when we are Hypothyroid.

      Give yourself a bit more Nature's thyroid and see if it makes a difference.

      Keep me posted and any questions just ask,

      Shelly

    • denisemoore
      denisemoore shellyC19

      Posted

      Hello and thank you from the top and bottom of my heart❤️ I am taking natures thyroid 97.5 I just looked at bottle also I just had blood work I will go get a copy of it tomm and email to you if I can. I am sooooo tired of wasting my life dealing with this. I have spent the pass 11 years trying to feel better until I hadn't realized how much I have lost my iron was low on a previous blood work but they didn't say anything this last blood work but different Doctor. I really don't care for this doctor. I tried to take a little more by chipping a piece from another pill but it made me hurt more
    • denisemoore
      denisemoore

      Posted

      I have also gained 100 lbs. within 11 years I am considering Weightloss surgery. What do you think?
    • denisemoore
      denisemoore

      Posted

      One more thing ....... Considering my baby has autism but very high functioning I'm considering having his thyroid checked
    • denisemoore
      denisemoore shellyC19

      Posted

      I take calcitriol and 4 calcium pills for no parathyroid issue ( I never had cancer these things where just removed ...... It was a oooooopps😥 blood word said vitamin D was good but I was told once before I needed a dif type vitamin D as well
    • denisemoore
      denisemoore

      Posted

      Plus I take a half if a high blood pressure pull with a diabetic in it for no parathyroid issue as well
    • shellyC19
      shellyC19 denisemoore

      Posted

      Hello Denisemoore:

      If your weight  is high the more thyroid you need also.  It usually goes Milligram per Kilogram in dosing.  This is not uncommon when low in thyroid.  We all gain weight. 

      I am not a fan of Bariatric surgery because I know a lady who died after it.  However if you do want it get the one called "The Sleeve" it leaves you a small stomach and is not messing with the bowels. The lapband can be a 2nd choice.  find a certified bariatric surgeon and ask to speak to others who had it done.  The person I knew died from a Deep Blood Clot that got into her lung area.

      Do some research on it, and see if your insurance will cover it.

      Please have your son checked as thyroid conditions can hit kids and not be detected.

      Autism: High functioning can be worked with.  They like structure in their world but they can be taught.  My hubby teaches Special Education and they do learn and can do things.  Sometimes they use certain therapies like horses and they can bring them out of their world. 

      Keep me posted on how you do,

      XO, Shelly

       

    • shellyC19
      shellyC19 denisemoore

      Posted

      Hello  Denisemoore:

      Yes, have him checked.  Kids can have it.  Simple blood test can tell and when a teen have him checked again.

      Shelly

       

    • barbara98940
      barbara98940 denisemoore

      Posted

      I too have a child on the autistic spectrum - aspergers. I think there's a link with low thyroid hormone levels in pregnancy. I'm going to start a new discussion on this as I'm wondering how many other people have.
    • barbara98940
      barbara98940 denisemoore

      Posted

      Its ok to chop thyroid tablets up (or inmy case, pull the capsule apart) and take part of a tablet.
    • denisemoore
      denisemoore barbara98940

      Posted

      Wen I tried to add a little more to the 97.5 tablet of nature thyroid I hurt worst than I did before I added it
    • denisemoore
      denisemoore shellyC19

      Posted

      I am doing lots if therapy since age 21/2 but sentences still not complete and he's considered high high functioning
    • barbara98940
      barbara98940 denisemoore

      Posted

      Sounds like you need to try a different thyroid medication. NatureThroid made me swell up. Try one without fillers such as Westhroid- P.
    • shellyC19
      shellyC19 denisemoore

      Posted

      Hello Denisemoore:

      Armour  Thyroid is a good one, so is Thyroid W and Thyroid -S, many can be bought online without a prescription but since you are in the USA, just ask your doctor for a prescription.  Most people can be on doses of 90mg to 180 mg depending on weight and blood TSH levels.

      I am on Liothyronine (Cytomel) which works on me and some people use a med called Thyrolar or Liotrix which is a T3 and T4 combo pill.

      Ask your doctor, you may try something else that works for you.

      Shelly

    • shellyC19
      shellyC19 denisemoore

      Posted

      Hi Denisemoore:

      They use trainors in the public schools here in addition to the Special Ed teacher.  They work directly one on one and they do make progress.

      Look into that as he will soon be going to school.  Look into music therapy also.

      Shelly

       

    • shellyC19
      shellyC19 barbara98940

      Posted

      Hi Barbara:

      I have a friend who married a man with Aspergers and he is a computer wizard and almost like a savant in Math.  It can be passed on in the DNA I believe.

      I also do believe that low thyroid levels in the womb can cause learning difficulties.

      XO, Shelly

    • shellyC19
      shellyC19 barbara98940

      Posted

      Tablets can be broken in half, capsules can be mixed into a pudding to avoid the taste.  Just ask the doctor for a 1 and 1/2 grain tablet or open the capsule up if you wish.

      It is all about the right dose for you.  Most people need a bit more.

      Shelly

    • shellyC19
      shellyC19 denisemoore

      Posted

      Hello Denisemoore:

      If Iron is low so will the ferritin.  Ferritin is a component of iron and must be 70+ or more for all thyroid meds to work well.  So get a good iron supplement of a daily vitamin with iron.

      Eat spinach also and chicken or beef livers are full of iron, but my not be a tasty dish to some.  LOL.  Also post your levels here and I can help see where you may have a problem.

      XO, Shelly

    • shellyC19
      shellyC19 barbara98940

      Posted

      Sorry Barbara:

      Message below about cutting pills was meant for DeniseMoore.  I also meant to say that Thyroid pills should not be mixed with food but can be dissloved in water in a cup and taken.

      Other capsules (not thyroid) if needed can be mixed with food.

      Shelly

    • barbara98940
      barbara98940 denisemoore

      Posted

      I private messaged you earlier today but from your question I surmise that you didn't get the messages. Check your patient forum settings. Have you got an email alert set to tell you when someone PM's you? And have you got it set so you can receive PM's?

      I gave you loads of useful stuff re aspergers and how to create the conditions where your son can thrive. I also told you that my child did brilliantly at school and is now in the final year of a degree at a top UK university. So there's every chance your son will do well too.

    • barbara98940
      barbara98940 denisemoore

      Posted

      Westhroid-P is by prescription. The one I'm on ThyroGold isn't - I buy it off the internet.
    • barbara98940
      barbara98940 shellyC19

      Posted

      It did confuse me a little, but hey I just thought I must have said something to which you were responding!
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