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Help! Should I be taking antithyroid medication? Doctors not sure?!?!

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audrey97605
audrey97605

I have been diagnosed with hyperthyroidism.  My labs have all come back normal except my TSH.  June (0.114) and July ( 0.281) lab normal (.486 to 5.0)...I have been taking beta blocker propranolol for a month. I hate it.  My heart rate is still high first in the morning 113. I have muscle weakness, sleeping troubles, dizziness, weight loss ,dry eyes and extreme fatigue.

Just consulted with an naturopath... Any advice??

1 like, 47 replies

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  • linda187
    linda187 audrey97605

    Posted

    Hi Audrey. I think you should be on a low dose of antithyroid medication, no higher than 5 or 10 mg because your T3 and T4 are normal. Then you should also add 1,000 mg of Acetyl-L-Carnitine and 1,000 mg of regular L-Carnitine. Carnitine is an amino acid that is regularly found in the body but is lost from the muscles of people who have hyperthyroidism and needs to be replaced. The Acetyl-L-Carnitine especially will help the medication to get into your cells if you take it at the same time as your medication. Your doctor will not know about this and thus won't endorse it but you can Google L-Carnitine and Graves disease and you will see articles about this. I think you will find if you do this, you won't need the Propranolol. Anyway that's what happened to me. I could not get my TSH up until I took the Carnitines. For my dry eyes, my ophthalmologist puts collagen plugs in the tear ducts to retain more moisture in my eyes. If I want the permanent ones, she would use silicone ones but I do not feel comfortable with silicone so I opt to have the collagen ones and she changes them every 6 months or so. The Carnitines are available in Health Food stores and if they do not have it, they can order it for you. Also available over the Internet on Ebay. Also avoid drinks and food with aspartame in them. Hope this is helpful to you.
    • audrey97605
      audrey97605 linda187

      Posted

      Hi Linda thanks for sharing all your great knowledge about this disorder. The naturopath doctor also has recommended the carntine's for me to take. I am glad I found her.  She is from Toronto and is well known for her knowledge about hormones and metabolism.  Dr Natasha Turner, she also highly recommended motherwort in high quantity.  She put together a plan schedule of my day. I am to start talking whey protein as well. I will absolutely take your advice on all levels. I will be in touch with both the doctor and eye doctor. I too feel I need the medication till the heart rate slow down. Much appreciated..
    • linda187
      linda187 audrey97605

      Posted

      Thanks for the information about the Naturopath. I may look her up and try her.
    • audrey97605
      audrey97605 linda187

      Posted

      Hi Linda. 

      Need advice again.  My Naturopath put me on 2000 mg of Acetyl carntine's and 1500 mg of L cartinine.  My doctor has decided since my TSH went down,  she would like me to start 5 mg of Tapazole every morning.  Should I change my acetyl amount?  Kind thanks Audrey 

    • linda187
      linda187 audrey97605

      Posted

      It depends on what your values are. When I started, my TSH was 0.12 and my T3 and T4 were in the mid range. I took 1,000 mg of Acetyl-l-Carnitine and 5 mg of Tapazole. My TSH climbed very quickly to 1.24 and then 2.4. I kept lowering the Acetyl to 500 then 250 mg and it didn't seem to make a difference if I took it with the Tapazole. So then I tried taking 5 mg of Tapazole every other day, continuing on Acetyl, and my TSH dropped lower. Graves is very sensitive to Acetyl and you will have to have more frequent blood work and adjustments at least once a month if you can. If you don't like where your values are you can even stop it for a week or two and then restart it. I am now taking 1,000 mg of Regular L-carnitine and 500 mg of Acetyl-L-carnitine and 2.5 mg of Tapazole. My values today were TSH 1.93 (normal 0.40 - 3.80), T3 4.7 (normal 4.0 - 6.8) and T4 13 (normal 12-21). I am going to ask my doc if I can stop the Tapazole. I was taking the Carnitine at the same time as the Tapazole but found that I would get a fast loud heartbeat for a short period of time so I now take the carnitines in the morning and the Tapazole at night and it got rid of that problem. You won't have a problem with the dose other than having to adjust it more frequently if you don't want to have values more closer to the hypo range. I think you will find your values improving very quickly but also work with your doc in lowering the Tapazole when necessary, don't just do it by yourself. I think you will find you will be feeling better very quickly and I think your antibodies will leave. Mine did. All the best. Please keep us posted on how you are doing,.
  • brightonbreeze
    brightonbreeze audrey97605

    Posted

    Hello Audrey 

    If I was in your position with all the information I have now from reading. I would go straight to a functional dr or a herbalist or a dietitian. I wish I had of done this in the last two years when I felt awful. I had all the symptoms of hyperthyroidism. Suspected myself I had but bloods were normal for 2 years and then not. I am convinced I could have prevented this if I had of got early intervention. Once you have Graves, you always have graves even with remission. Drs treat you for lab readings an alternative practitioner will treat you the patient.  

    Good luck.I believe     that you could be lucky and have an  Opportunity to give your body the support it needs without potentially getting or developing a worse condition.  There are lots of wonderful sites out there. The natural endocrine dr. Elaine Moore. 

    Books I would  recommend : Your Thyroid and How To Keep It Healthy.  Graves Disease and How to Other Thyroid Disorders. You will quickly see that the thyroid gives plenty of warning signs it is in trouble before it switches down and it struggles to keep going. There is a lot you can do for yourself. I wish I was in your position and knew what I now know a year ago. 

    Wishing you all the best BB

    • audrey97605
      audrey97605 brightonbreeze

      Posted

       wow thank you so much for all the information. I will definitely get the books! I to believe in early intervention. That is why I have found this great forum. I know this is an early warning signs for my body and I am glad to have the support. I have already changed my life a great deal in the last two months.  I will keep everyone posted.  Kind thanks A
  • acd
    acd audrey97605

    Posted

    Hi Audrey

    For more info on lab results try looking at 'stop the thyroid madness' website there is lots of detail there.  A lot of the site refers to underactive thyroid issues but there is still information which is useful.

    Great that you are conulting with a naturopath, they should be able to help much more than any endo!  I have finally found one near to me who I met last week, she puts my health problems down to heavy metal toxicity from amalgam fillings!

    Do as much research as you can & eat a healthy diet, most of the stuff I have seen suggests gluten is a problem for most people with thyroid problems.

    Just remember it is not your thyroid that is broken it is a problem with your immune system.

    Good luck on your journey back to health.

    Ann

    • audrey97605
      audrey97605 acd

      Posted

      Thanks ann...I will look at the website for sure. I have been doing alot of my own research as my experience with medical advice hasn't been great...all advice put me in the right direction...much appreciated A
    • audrey97605
      audrey97605 acd

      Posted

      Oh and yes my immune system was weak before the hyperthyroidism...I know this is going to be awhile to recover...My muscle are needing repair...have you had your filling removed??
    • acd
      acd audrey97605

      Posted

      Hi Audrey

      Sounds like you are taking the right path to recovery, not trusting the medical profession for a start!!

      I've not had my fillings removed yet, naturopath believes I am not well enough to cope with it at the moment, disturbing them releases significant mercury vapour, plus you need to go through a detox programme before attempting removal.  My naturopath previously suffered with underactive thyroid, ME & breast cancer & she said the fillings were the route of all her issues, of course she discovered all this herself then went on to train to be a naturopath to help others. 

       

    • audrey97605
      audrey97605 acd

      Posted

      Wow, thats qute a story with your naturopath. I think thats what I willl do is wait till I am feeling better to have these fillings looked into. I have a lot going on right now. Are you still unwell because of your thyroid?? 

      Its hard,, I cant work or drive right now. Dont have the strenght in my muscle system... 

    • linda187
      linda187 audrey97605

      Posted

      The Carnitines will definitely improve youro muscle problems. Hyperthyroid patients lose carnitine from their muscles - that's why supplementing with L-Carnitine is so helpful.
    • audrey97605
      audrey97605 linda187

      Posted

      Linda - I placed my order today with Dr Turner.  I can't wait to start the carntine's..she also recommends 5000 UI of vitamin D3..along with motherwort tincture #3.  She is having me start whey protein shakes with out sugars. Her brand..this may sound weird but I can't wait to put weight back on...
    • acd
      acd audrey97605

      Posted

      Yes still suffering with Graves symptoms and I have rheumatoid arthritis also, have good & bad days usually. Sometimes I feel ok and try to do too much then just hit the wall & I can't do anything the next day.

      Just be careful with removal of the fillings, it should be done by a specialist who will take extra precautions for example both dentist & patient need oxygen masks & it not advised to do too many at one time.  Have a look online there is lots of info about it.

      Hope your muscle strength improves soon, sure it will when you start taking the protein etc

    • linda187
      linda187 audrey97605

      Posted

      Not weird. I think you are saying you can't wait to get healthy again. If your body is functioning well and you are doing all the normal healthy things, I think your weight will normalize too.
    • audrey97605
      audrey97605 linda187

      Posted

      Thanks Linda - that's what my goal is functioning normally and doing healthy normal things . I am not there yet ... I haven't been well for almost three months... It the last 6 weeks it has been wee better ... I need to build up my immune system to get stronger ... It's tough .. Still unsure if my doctor will agree to the antithyroid medication... Really hoping the ND.. Has me on the right track ... I appreciate your positivety on this forum .. It definitely helps ... :-)
    • linda187
      linda187 audrey97605

      Posted

      Someone on this Board posted about an immune strengthening product called Simba. It is marketed by a company called The Little Herbal Company situated in New Zealand. You can Google them to find their website. I would like to order somea and try it.
    • audrey97605
      audrey97605 linda187

      Posted

      Hi Linda.  I checked out simba but couldn't figure out the ingredients.

      if you ever write a book let me know. I'll come to the first book signing. :-)

    • acoffin
      acoffin linda187

      Posted

      Hi Linda,

      My daughter's lab test this morning indicated she is now hypothyroid.  The good news is her TSH is finally withing range for the first time in 5 years.  Free T3 and T4 is just slightly on the hypo side...she is more tired and has gain some weight as well.  I suspect it's just time for her to decrease her Tapazole dosage and perhaps she is in remission and does not require any more medicine.  She is currently on 3.75 mg tapazole per day, along with 2000mg acetyl L carnitine.  She felt her best in the upper ranges of both T3 and T4...what would you suggest her new dosage should be?  And do you think this is due to remission and that she does not need to take anymore medicine?  Thanks

    • linda187
      linda187 acoffin

      Posted

      She sounds like she is where I am. She should have her Graves antibodies checked. I will bet they are gone. How did you get a dosage of 3.75 mg? I break my 5 mg tabs in half and there's hardly anything there. I had the same problem with the Acetyl working so well and kept lowering my dose of it. She should take no more than 500 mg of the Acetyl and now I would NOT take the Acetyl & Tapazole together. I would take the Acetyl first thing in the morning and if she is on any Tapazole, take it at least 8 hours later or before bedtime or take it every other day. What I found when my TSH came well into the range I played around with decreasing my Acetyl dose so I would not get hypo. At my doc's advice, I took Tapazole every other day instead of every day, and my TSH dropped from 2.4 to .80, still within range but not hypo. Then I went back to daily but with only a dose of 225 mg of Acety. TSH still climbed back up even at a low dose of Acetyl. Currently my last values were TSH 2.4 and T3 right at the bottom of normal range and T4 slightly above the bottom of normal range so I dropped my Tapazole down to 2.5, and take 1,000 mg of regular L-Carnitine and 500 mg of Acetyl but not at the same time as the Tapazole. I take the Carnitines in the morning and Tapazole at bedtime. I am now starting to lose weight and if my next labs are well within range, I am going to call my doc and ask him if I can discontinue the Tapazole altogether and I will stay on this dose of the carnitines. If she is like me, her values will normalize when she makes the further adjustments. I would not discontinue the Tapazole without running it by the doc. I think if she plays around with dosages like this her hypo will improve rapidly. I found that regular L-Carnitine did not drive my TSH values up like the Acetyl dose which is why I added it back in and lowered the Acetyl dose. Hope this is helpful.
    • linda187
      linda187 acoffin

      Posted

      Just to let you know, I got very frequent blood levels done when the Acetyl drove my TSH up so well and kept adjusting my Acetyl down when my TSH hit 2.4. So much so that my GP admonished me and told me he would not do more than one test every 6 weeks. My experience was that playing around with dosages of both carnitine and Tapazole really helped me avoid hypo and the blood levels adjust very quickly when doing this. Is she still on Melissa and Bugleweed? Some Graves patients do well on that alone so I don't know what to tell you about adjusting those. After my TSH rose so much to 2.4, I was finding that if I took it at the same time as Tapazole, I got a very fast heartbeat and if I did not take them together, this did not happen. Initially when my TSH was so low, this did not happen when I took them together. I really wish they would do more clinical trials but they don't seem to want to because drug companies won't make money on this and whatever company makes the antithyroid drugs will lose money. Never mind what is in the patient's best interests. I am hoping to have a group conference call with my boss, the Medical Director of Sigma Tau (who sponsored Dr. Benvenga's research) and my endocrinologist and hopefully putting all these heads together will result in us all learning more. I really think that L-carnitine tells the immune system "false alarm" and turns it off from attacking the thyroid much like steroids such as Prednisone do in other autoimmune diseases. I wish I could have a conversation with you by phone but I don't think they allow us to post phone numbers on the Board. In any case, I want the medical profession to do more with this because unlike thyroid meds, carnitine is produced in the body so not as many side effects and if it works as well or better than meds it should be used far more for Graves treatments.
    • brightonbreeze
      brightonbreeze linda187

      Posted

      Hello Linda. Do you mind telling me how quickly your levels came down once you started on acylt caritine? I raised my dose to 1500 acylt caritine and1500 l caritine last week. Just curious. 

      Love how pro active you are being BB

    • linda187
      linda187 brightonbreeze

      Posted

      I was just speaking to the Medical Director of Sigma Tau about this.  The regular L-carnitine is the one that all the studies have been done with and not very many studies have been done on the Acetyl.  However, in my case when I first tried Carnitine, I took 500 mg of regular L-canitine and my TSH rose from less than 0.01 to 0.05 and didn't rise much after that until I added 1,000 mg of Acetyl.  Then it really rose fast to 0.70 at my next blood test, such that I really had to have more frequent blood tests and dosage adjustments to both the Acetyl and Tapazole.  In the last year, I only took the Acetyl in decreasing amounts down to 225 mg along with 5 mg of Tapazole but still my TSH was between 1.4 and 2.4 with T3 and T4 at the bottom of the normal range.   More recently I have been on a dose of Regular L-Carnitine 1,000 mg, Acetyl-L-Carnitine 500 mg and Tapazole 2.5 mg.  I have switched from taking the Carnitines at the same time as the Tapazole (which you want to do initially to raise your TSH values), to taking them separately, Carnitines in the morning and Tapazole in the evening.  I just had blood work done today and depending on those results, I will go off the Tapazole altogether and remain on 1,000 of regular L-Carnitine and 500 mg of the Acetyl-L-Carnitine.  You don't want to stay at a high dose of Acetyl too long while you are on the Tapazole but when you are off, you can take 500 or 1,000 mg daily.  There is quite a difference between the Acetyl and Regular I find in how quickly it works on your thyroid.  I had to experiment, work with my doc to adjust the Tapazole, have frequent blood work and I never altered my Tapazole without checking in with him but did alter the Carnitine levels on my own depending on my blood work.  Hope this helps.
    • brightonbreeze
      brightonbreeze linda187

      Posted

      Thank you very much Linda for your comprehensive reply. I have only been on carbimazole 2 months but doing lots of other things along side and initially on 500 of both L carnitine and A Carnitine until your advice. My levels came into normal range within a month. But no TSH. As you know I lowered meds myself because I was coming down so quickly, my symptoms and Dr refusing to do another test. I am due one tomorrow so it will be interesting to see what's going on. It would be amazing if TSH levels have begun to move!

      Thanks again very much BB

    • linda187
      linda187 brightonbreeze

      Posted

      I would expect your levels to be quite different at that dose very quickly. It requires a lot of playing around with doses of Acetyl and the methimazole to keep all the levels within range but my experience with the Acetyl was that it raised my TSH very quickly and required rapid lowering of doses to keep it in range. How are you feeling otherwise? In my talks with the Medical Director, I told him I think the Acetyl normalizes the immune system so it stops attacking the thyroid. In other words it tells the immune system "Go to sleep, false alarm". But it requires very close monitoring of results and frequent adjustments. My General Practitioner too said he would not test more frequently than every 6 weeks. Keep us posted.
    • brightonbreeze
      brightonbreeze linda187

      Posted

      Hi Linda. I feel absolutely fantastic since my thyroid has come back into normal range. The best I have felt in years. Even though thyroid levels were ok I felt dreadful thought I was just old. I feel so happy again as well which is a wonderful surprise. Very keen not to go hypo and stay constant.

      Thanks for the support I appreciate it

      BB 

    • audrey97605
      audrey97605 brightonbreeze

      Posted

      Hi BB.. When you felt dreadful what were your labs? 

      And what were your symptoms??I am having a terrible week. Finally convinced my doctor to retest my labs tomorrow.  My weight loss is continuing... The aches are horrible...heart rate still high first in the morning....brain fog... 

    • brightonbreeze
      brightonbreeze audrey97605

      Posted

      Yes all of the above except I gained a few pounds from eating sugar to keep going. I was anxious, restless but exhausted. Like that for a couple of years. Was borederline anaemic and thought it was that or early menopause. palpitations Have been extremely bad over the last couple of years. 

      Hope you feel better soon 

    • brightonbreeze
      brightonbreeze audrey97605

      Posted

      My labs were normal. I have been having blood taken every 6 months because I kept going back. Fine last November , May graves. 
    • acoffin
      acoffin linda187

      Posted

      Thank you Linda!  will follow your advise ...and decrease the dosage  with acetyl lcarnitine.  Thanks again.
    • acoffin
      acoffin linda187

      Posted

      You are so passionate about helping others and I can't thank you enough for leading me the right direction to find the light at the end of the tunnel.  My daughter's doc phoned this morning (obviously received the lab results showing hypothyroid) but we didn't get the message in time ....and unfortuantley, today was her last day before her vacation.  So we will need to adust on our own...cause Nadine is just not feeling great.  Nadine was cutting up her 5 mg pill into halfs and 1/4 pieces in order to get the 3/4 pill.  So she skipped today's pill and will start tomorrow at 2.5 mg tapazole in the evening and 500 mg acetyl L carnitine in the mornings.  She was taking the herbal remedy but since the lab results, I think we better stop taking those for the time being...she was also taking LDN, so we'll put that on hold as well.  She will continue to take omega oil , Vitamin D, probiotics and remain gluten free.  I just was reading that some Graves patients will spontaneously become hypothyroid (hashimoto) and I hope that's not whats happening (do you think?).  Her blood work is of the following... TSH

      TSH 1.7  (0.53-4.6

      T4 Free  10.0 (10.5-20.0)

      T3 Free   3.0  (3.5-6.5)

      About  2 months ago, her doctor orders a TSH Receptor Ab test:

      H 6.6  <1.8  (should i ask the doctor to order another antibody test for hashimoto or graves?)

      to me...i think it's due to the fact that she is either in remission or close to it and it's time to slowly come off of some of the meds/supplements.  we will be very careful to come off of tapazole very slowly so that there is no set backs.  do you think missing  1 day's dosage is enough to get her back on track? or should be do that for a week before take 2.5mg on a daily bases?  thanks again linda...you are a god sent!  (should="" i="" ask="" the="" doctor="" to="" order="" another="" antibody="" test="" for="" hashimoto="" or="" graves?)="" to="" me...i="" think="" it's="" due="" to="" the="" fact="" that="" she="" is="" either="" in="" remission="" or="" close="" to="" it="" and="" it's="" time="" to="" slowly="" come="" off="" of="" some="" of="" the="" meds/supplements.=""  we="" will="" be="" very="" careful="" to="" come="" off="" of="" tapazole="" very="" slowly="" so="" that="" there="" is="" no="" set="" backs.=""  do="" you="" think="" missing=""  1="" day's="" dosage="" is="" enough="" to="" get="" her="" back="" on="" track?="" or="" should="" be="" do="" that="" for="" a="" week="" before="" take="" 2.5mg="" on="" a="" daily="" bases?=""  thanks="" again="" linda...you="" are="" a="" god="">

      to me...i think it's due to the fact that she is either in remission or close to it and it's time to slowly come off of some of the meds/supplements.  we will be very careful to come off of tapazole very slowly so that there is no set backs.  do you think missing  1 day's dosage is enough to get her back on track? or should be do that for a week before take 2.5mg on a daily bases?  thanks again linda...you are a god sent!>

    • linda187
      linda187 acoffin

      Posted

      Is she on Low Dose Naltrexone, i.e. LDN? I would definitely stop that immediately! I tried that and got severely depressed! Improved immediately after stopping that! Her results are not that out of whack and I am sure will respond quickly to adjustments. You are on track by stopping the other supplemts as well, i.e. Bugleweed etc. Her TSH is good if she can keep it there. The rest are very close to being in range. Better than what I would expect on the dose of Acetyl she was taking. That dose of Acetyl is not too high if you are taking it alone but when combined with Tapazole will definitely move results to hypo if on it too long. That is an okay dose to start on with Tapazole when you want to get moving in the right direction but once lab results show improvement needs to be lowered. I started at 1,000 mg and lowered it to 500 mg then 225 mg when lab resuls showed TSH of 2.4 and T3 and T4 at lower end of range. Then my doc had me use Tapazole 5 mg every other day. When I took 1,000 mg of Acetyl and 5 mg of Tapazole every other day and 2,000 mg of Acetyl on the off days, my TSH dropped to .80 but I don't feel as good on every other day dosing for long term. I recently stopped my Acetyl for 2 weeks before restarting it by taking it at 500 mg separately from Tapazole along with 1,000 mg of regular L-Carnitine because I was getting rapid heartbeat and this improved it. I would definitely have doc check for all antibodies. I don't think she would have Hashimoto's but doesn't hurt to check. I think her Graves antibodies will be gone as well. The Acetyl was a Godsend for me but was very very sensitive in that it worked a little too well when nothing else did to raise my TSH and required a lot of adjustments. You are on the right track. Stopping Tapazole for a day before switching to 2.5 mg daily and lowering Acetyl is a good plan. I think if you make these adjustments, you will see improvements very quickly and anyone using it has to adjust individually depending on results and symptoms. Please please keep me informed as her symptoms change and lab work changes. I will let you know my lab results on Monday. I am feeling good on what I am taking and even losing weight.
    • linda187
      linda187 acoffin

      Posted

      I can't stress enough that I don't think those lab results would cause your daughter to feel bad as I have had similar results and felt fine with lots of energy. Her TSH is right where you would want it and the T3 and T4 will move up rapidly with dose adjustments. I think the LDN is what is making her feel bad and I will bet her feeling bad began when she started on the LDN. I hate the stuff.

      Linda

    • audrey97605
      audrey97605 linda187

      Posted

      Hi Linda ... boy you sure are busy giving some great advice !!! I am so happy I found this board. I had some blood work done today . 

      TSH   .211 ( lab range .486-4.5) it went down from last time (.281)

      My doctor hasn't for the F3 or F4 back yet .. Hopefully Monday ... They were in normal range last time .

      She has decided to try the lowest dosage of antithyroid medication to see if that will help... Once a day in the AM... She said she'll will change it if the other labs comeback out of range . 

      Could all on the board let me know if your symptoms are the same at the same time everyday ?? It seems I have muscle pain and weakness at the same time early morning and early evening ... It's weird but I feel wee bit better in the evening ?? 

      Kind thanks !!

    • linda187
      linda187 audrey97605

      Posted

      It's not unusual for the results to vary slightly I was told by my GP. .211 and .281 are not that far apart and I would expect your T3 and T4 would be in the same range as well though perhaps not the exact same figures. As far as symptoms goes, I noticed that there was a short period in the day when I would get a fast heartbeat. So I stopped taking my Carnitines at the same time I take my Methimazole. Now I take Carnitines in the morning and Methimazole 2.5 lmg in the evening and that seems to have corrected the problem. Initially when my TSH was low, I wanted to take the Acetyl

      -L-carnitine at the same time as the Methimazole as the Acetyl part helps get the methimazole right into the cell nucleus to raise my TSH. Once my TSH was well in the normal range, however, it worked better if I switched it.

    • brightonbreeze
      brightonbreeze linda187

      Posted

      Hi Audrey

      I had a period of a couple of months exhaustion and roaming pain particularly in fingers. Around time before initially diagnosed I would feel different during the day. I often felt exhausted on waking, weak, breathless fast heart on exertion, palpations would come and go, occasionally restless, often nervous and at night awake,anxious and often palpitations at worst 

      Hope you get to the bottom of it 

      BB

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