New Dr lowered levo. HELP

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I've been on 300 mcg Levothyroxine for several years. Was still hypo until I was given Adderall 40 mg day. Except for PTSD was fine. Old Doc retired and new Doc is freaked because my TSH is almost undetectable, T3 and T4 high side of normal. She lowered it to 250mcg and I'm in a tailspin in less than a month. Crying, shaking, cramps in my feet, leg tremors, etc. ANXIETY out of control. Please, please help.

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  • Posted

    Hello Brun:

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

    300mcg of Levo is a huge dose.  Most people take 75mcg to 125mcg. If your TSH is "undetectable" as you say, then you are in the Hyper zone.  0.45 to 4.50 is normal range and if you are at 0.00 or so, you are in a danger area.

    Too much thyroxine (LEVO) can cause a heart attack and cause palpitations. It is dangerous to your health and your liver at a very high dose!

    I think you are not processing Levo well until they raised the dose so high.  Your T3 and T4 should not be on the high edge of normal. 

    There are other thyroid meds that work better.  I myself had to go off Levo many of years ago as I was not getting well on it. 

    Here  are the names of many other meds for the thyroid: Liothyronine (Cytomel) is just T3.  Armour Thyroid  is made from a pig's gland. Thyroid S and Thyroid W, Thyroid Gold,  are natural thyroid meds also made from a pig's gland. Liotrix (Thyrolar - is a T3 and T4 combo).

    Hyper symptoms are happening in you such as anxiety, leg cramps and shaking, tremors, & crying.   I understand they lowered it, but these all fit with overmedicated or too much thyroxine.

    Hyper symptoms are: feeling HOT, insomnia, anxiety, huge weight loss,  tremors, sweating, jittery, nervousness, panic attacks, fast heart rate, palpitations, headaches....etc.

    Hypo symptoms are: feels cold,  weight gain, slow heart rate, low energy, depression, muscle aches, brittle nails, bruising, low temp, sleepy/fatigue, dry skin....etc...

    I think you need a different thyroid medication, as I said above.

    Keep us posted on how you get on.  If you can please get your lab report and post your blood levels so we can see what is happening.

    Regards,

    Shelly

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    • Posted

      Thank you for your response. What I don't understand is why when the dosage is raised the symptoms go away. It has happened many times. Decrease the dosage and symptoms return. With the 300mcg and the Adderall 40mg my pulse is around 65 and bp 120/70. Temp is 97.4. Asked about Armour etc. Nope! Too hard to dose. Do I need another Dr?
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    • Posted

      Hello Brun:

      The body is used to a very high dose, and a drop will make some bad symptoms return but such a high dose is dangerous.  NDT's like Armour are not hard to figure out the dose on it. 

      If you are in UK, they refuse to prescribe it because of the policies they have and it is a natural medication made from a pig's gland and you can't license or patent a pig.

      If in the USA, it can be prescribed and I was on it for years.

      I would say you do need a better doctor and one who understands the thyroid and  can work with you to try other meds like NDT's.  Please look into that.

      Keep us posted, we care!

      Shelly

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    • Posted

      I have found a naturopath N.D that specializes in thyroid issues. I see her on the 10th of March. Yea!!! I will post my tests she orders when I get them

      Meanwhile I fired the other Doc, went back to 300mvg Levo and all the symptoms disappeared starting within hours. I seem to be sensitive to Levo. A day and a half without my Levo and Adderall (in the hospital for small bowel obstruction) my pulse dropped to 38 bpm. I hope this new Doc can really figure this out. I'm writing a critical to take with me. Thank you so much for all advice!!

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    • Posted

      Hello Brun:

      Okay, thanks for the update.  Let us know what the Nautropath says because fresh ideas can't hurt.  You need to find what works for you.

      XO, Shelly

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    • Posted

      My new thyroid test panel is as follows:

      free T4 0.8-1.8   mine is 2.5

      TSH      mine is <0.01

      FreeT3 2.3-4.2 pg  mine is 5.4

      Reverse T3  8-25  mine is 34

      Thyroglo 

      Thyroid Perox Ant  <9IU  mine is 2

      Signal to cut off  <1   mine is .40

      What is your opinion?  Any help or advice is appreciated.  These tests were ordered by my new naturopath, although I had to INSIST on the Reverst T3 test.   She wasn't even going to bother with it.

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    • Posted

      Hello Brun:

      Well let's go over the blood:

      TSH is low which means Hyperthyroid or too much medication  should be 0.45 to 4.50 your level is below 0.01 which is no where near the normal and is almost not detectable.  This can change by lowering your dose of the LEVO, your  thyroid med.  A natural thyroid medicine called Armour Thyroid or Thyroid S are better for you.

      So you can back off on the Thyroid medication

      Now Reverse T3 shows 34 which is saying you are making too much T3 and the liver will have to eliminate the excess out.  This is not good on the long term, you want that to be within range and goes along with too much hormone in you.

      Free T4 is a bit high so you do not need as much hormone.  This is the amount in your blood flowing around, you need that to come down to 1.8  or slightly under that. Too much T4 can make the heart race and you will feel jittery and anxious.

      TPOA (Thyroid Perox and Thyroglobulin are good!  YAY, good news, as that means your  are not having any autoimmune Thyroid disease.   

      I would lower your Thyroid medication or even it out by taking a lower dose 3 times a week.  You will be better for it.  Ask your naturopath but many people need to take a lower dose  and  or an alternating dose.  300mcg is a huge dose and you do not need that high of a dose as you have several abnormal blood levels.

      Let me know how you feel and what you think.  Any questions just ask.

      Shelly

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    • Posted

      This naturopath doesn't like NDT's because they cause autoimmune problems. (wish I would have known that, and I did bring it up in emails). All I know is I lived for most of my life feeling like total crap and wanting to die at 100mcg, then 150mcg, then years at 200 mcg, then finally 300mcg when my results finally dipped that low. So, wh does it take 30 mg of Dexadrine along with 300mcg of Levo to feel normal. No palpitations! Pulse of 64!!! Take away the Dexadrine and I am damn near comatose. Even on 300mcg Levo. Literally, near comatose at one point. Unable to stand up unsupported, or even blink without effort. Also I remember my Grandmother being on 300mcg for years as well. Same problem as I had- fatigue, unable to lose weight, etc. I really want to talk this Doc into Armour.

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    • Posted

      Shelley, is the ratio between T3 and reverse T3 correct? I can't remember the calculation.

      Brun, I found that when I reduced my thyroxine dose I got hypothyroid symptoms - even if the dose was the correct one. You need to get through the withdrawal symptoms to be able to find out if it is the correct dose. I found the best way to minimise the withdrawal symptoms is to reduce the dose very slowly, by a quarter of a 25mcg tablet at a time every 2-3 days. After a week you will have reduced by 25mcg. Stay at this new level for a couple of weeks then, if you need to reduce further, start the slow reduction again. To find out what level you should be aimng for, do the calculation 'body weight in kg' multiplied by '1.7'. The answer will be your dose of thyroxine required in mcg. This answer assumes that you don't have any serious medical conditions that require you to reduce more quickly.

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    • Posted

      Brun, I have other auto immune problems. I had to switch away from thyroxine because I became intolerant to it - I've developed an intolerance to maize starch (it's in all the synthetic thyroxines). I have switched to NDT and my autoimmune stuff has improved. Plus I feel way better. Like you I had to be over medicated on thyroxine to feel anywhere near normal. So my advice would be to ask this naturopath to prescribe NDT and if they refuse, change naturopaths. In my opinion it was thyroxine not suiting me that caused my autoimmune problems. My thyroid is defunct and doesn't function at all.
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    • Posted

      I think you are absolutely correct. It's time to stand up for myself! At 51 years old I've suffered with this for over 35 + years. Can an NDT be anymore harmful than taking amphetamines for years? I should ask her that if she balks at the NDT. Thank you!!
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    • Posted

      Hello Brun:

      NDT - Natural dessicated thyroid does not cause autoimmune thyroid disease at all.  It is made from a Pig's gland and is almost identical to our own gland.  NDT's have been around for more than 100 years and are the original thyroid medicine. NDT's are so much better since you get all 4 hormones made by the thyroid, and they are easily absorbed no major converting problems.

      If you wish to stay on the  LEVO 300mcg that is up to you.  I am only going by your blood work and pointing out the abnormal ones. I understand your symptoms do come back when you do a lower dose. 

      Dexadrine is a Stimulant used for dieting and appetite control and it can be addicting.  It does act like an "UPPER" and will make you feel WIRED and jazzed up, and increase alertness and keep you awake.  I will say it helps you to not feel Hypo in the sense of energy & alertness.

      I may not agree with the doctor who put you on this Dexadrine, as it is not a good thing to be on long term.  You may be okay now but in the future your heart can take a hit and it can place stress on it.  I am just being honest.   After all you are the one taking it, and if you feel okay then it is up to you.

      Read up on NDT's and see if you can get another doctor to prescibe them for you to see if you do well on them.  It can't hurt to try.

      Any questions just ask,

      Shelly

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    • Posted

      Hello Barbara:

      The ratio is 2:1 on FT3 to RT3  (it could vary depending on the lab).

      I think certain blood levels speak for themselves above in the fact that the TSH is not even detectable enough.  Never mind the T3 and RT3 which are high and the FT4.  Way too much. The dexadrine to boot is so dangerous to the heart on long term use.

      I agree with you too much medication is being used here  (300mcg of LEVO) and the body weight times 1.7 calculation is safer.  Better yet an NDT would be safer & work better on her.

      All I can do is suggest this.

      Shelly

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    • Posted

      I do thank you for all the advice. I'd never heard that about NDT's! I really will look for a Doc to try me on them. Thank you!!!
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    • Posted

      Thanks Shelley. I knew you'd know!

      For me to feel even vaguely normal when on levothyroxine my TSH was undetectable and my T4 had to be just over the upper range, so I know just how you feel Brun. However we differ in our T3 results. Mine were always in range despite my T4 being too high e.g. TSH= <0.01 (0.4-4.9), T4=22 (9-19),

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    • Posted

      Mine were always in range despite my T4 being too high e.g.

      5/5/2015: TSH= <0.01 (0.4-4.9), T4=22 (9-19), T3=5 (1.6-5.7).

      10/11/2014: T4=23.7, T3=4.6

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    • Posted

      Hello Barbara:

      This is interesting and at what dose were these results based on when you were on Levo?  I never saw anyone on 300mcg most are on 75mcg to 150mcg tops.

      I never got that far on Levo, as a 25mcg dose gave me awful loose bowels and cramping hard a lot, and my TSH was in the Hypo zone forever.  It got much better on Armour Thyroid for me. I felt normal but it took a long time to figure out the T4 problem I have.

      I seem to be very good now on just Liothyronine T3 and no T4 and a lot of the bad symptoms stopped and my TSH is good every 3 months.

      Regards,

      Shelly

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    • Posted

      5/5/2015 I was on 162.5mcg levothyroxine. 10/11/2014 i was on 175mcg levothyroxine.

      The only time have been on 400+ was during my second pregnancy. I was really ill, virtually comatose, and my pulse dropped to 38 (normally 60, unless hypothyroid) and my GP & I kept putting the levothyroxine dose up. Got to 400+ before pulse recovered.

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    • Posted

      Hi Barbara:

      OMG 400mcg wow!  I have never seen or heard that high. I thought 300 mcg was nuts!

      Amazing you survived 38 pulse, that is shock conditions! 

      Thanks for the info.

      Shelly

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    • Posted

      When I was in the hospital in September my pulse dropped to 38 bpm. That was less than 3 days without the 300mcg Levo and 40 mg Adderall. (My normal pulse on both meds is about 66. Levo only and its 52 bpm). The nurses came in waking me up "Are you OK?!!! Lol.
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    • Posted

      Saw the naturopath again today. The trace minerals , probiotic, andagnesium citrate and fish oil she put me on last month has helped many things. We talked and she IS willing to let me try Armour now that she's seen my blood tests. Yeah!! I pray it works well fore so I can ween off the Adderall. You all are amazing to chat with. A WONDERFUL OUTLET and INSPIRATION for those of us confused and struggling. Thank you!!!!
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    • Posted

      Hi Brun:

      This is good news, I think you will do better on Armour.  Please update us all, good or bad.

      I enjoy helping people and am doing what i was trained to do, knowledge is meant to be shared.

      Blessings to you,

      Shelly

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    • Posted

      Hi Brun, I too am really please that you are being offered an alternative to try. Do note that different NDTs have different fillers in them, so if one doesn't suit you, try a different one. The only prrscription one I know of without fillers is called WP Throid, aka Westhroid-P. It is advised that you start on a low dose and build it up slowly so your body can get used to getting T3. See website tpauk for dosing instructions.
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    • Posted

      The Naturopath switched me from 300mcg Levothyroxine to 120mg Armour. It's been 9 days and all I want to do is sleep or just lay around. The Adderall doesn't seem to help much. How long does this conversion take? I don't wake up so to speak until about 9pm. Then I'm good for a few hours before bed. This is really really rough.
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    • Posted

      Brun, when are you next due to see the naturopath? It is worth contacting them and saying how you feel. It sounds like you might need a higher dose. When my endo was switching me from 175mcg levo to NatureThroid she said to take 2.5 grains (195mg). Having said this you do need to start on s low dise and build up slowly so that your body is able to adapt to having T3 directly from the tablets instead of having to convert it all from T4 (levothyroxine).
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    • Posted

      Hello Brun:

      Most people need anywhere from 90mg  to 180mg or even more of Armour Thyroid.  Our bodies are slow and it takes time for the body to process and build a level.

      When we take a medication we have some get into our blood stream fast and then some is later excreted via urine and feces. However you have a half life of the previous dose. Then you take another dose and build on the half life of the dose before, so it takes time and anywhere from 6 to 12 weeks to build a level. Most people feel better after a month on it.

      If you take a higher dose now, say 160mg or even 180mg you may shock your system with a big dose.  Ask your doctor if you can have an increase in the Armour Thyroid. Tell her how rough you feel. It may help.

      Keep us posted,

      Shelly

       

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    • Posted

      I did talk with the Doctor and she did add another 30mg of Armour (for a total of 150mg a day). This and the Adderall had better get me going. I can barely work, at this stage. But, my dry skin is clearing up! Lol
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    • Posted

      That's good. Keep a log of your symptoms so you can spot when you are on the correct dose/need more or less NDT. Youll need at least a week on this dose, probably two, before you will know whether to increase it further.
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    • Posted

      Hello Brun:

      Give it a chance to build a level.  I wish our bodies were faster but sadly our bodies take time to adjust. Hormones also by protocol you start low, and then add more after time.  Do log it as Barbara says, because you will be able to see what  symptoms fade away and even if it is small like skin changes keep a log.  It is hard to remember it all as time goes on.

      Keep us updated on how you do, we all know how it feels.

      Shelly

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    • Posted

      With the Adderall and some coffee I'm able to function o.k. now the past few days on switching from 300 mcg Levo to the 130 mg of Armour. I was, at one point, unable to work. But now, I have that long forgotten "second wind" around 9p.m. or so. Some nights awake until after 6 a.m., like tonight! I never wake up feeling better than when I went to sleep. I NEVER dream. Well, I go thru a period once every year or so of dreaming during sleep. BP down to 104/62.
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    • Posted

      Hello Brun:

      Sounds like the Armour is doing it's job.   Give it some more time and most people are on doses of 90mg to 190mg.  So as time moves on they will test the blood and then we will know how your blood is doing.

      Keep getting well, and keep us updated,

      Shelly

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    • Posted

      Should it be this difficult, really? I wake up and start crying. I have crying spells all day long now. I haven't felt this rotten in over 6 years. I forced myself to clean the kitchen yesterday. After scrubbing until I was exhausted, I went and took my BP. 116/77 58 pulse. I've had to turn down work.
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    • Posted

      Hi brun, I'm sorry to hear you're struggling. What dose are you on now? When did you last increase it? When are you nect due to see a doctor? Hang in there, it gets better.
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    • Posted

      from 300 mcg Levothyroxine for 10 years to: 120 mg Armour on April 22, then raised another 30 mg on May 2nd. I don't know about Armour, but the first time I was treated for hypothyroidism was with Synthroid, 100 mcg. It took effect in 6 hours! I was expecting 2 weeks, like I was told. (same with many meds I've been prescribed).
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    • Posted

      If it was me, I would contact the doctor that prescribed Armour and tell them them your symptoms. It sounds like you need to increase the dose. To give you some idea (thiugh remember everyone is different), I was on 175mcg thyroxine and was prescribed 2.5 x 65mg grains of NatureThroid (i.e. 195mg). So if you were on 300mcg thyroxine and your blood test results were in range, this would indicate you may need a higher dose. Do contact your doctor.
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    • Posted

      On the Levo everything was out of range, but I felt great. Right at this moment, I'm laying here crying not wanting to go on. I hate life, I hate Armour Thyroid, I hate the whole goddamn world!
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