Blood Works arrived but Doctor never sent message re dosage!

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First they started me off on 100 mcg and my TSH dove to 0.057.  Reduced it to 75 and then to 50.  My TSH from Tuesday arrived early this a.m. and is now .223/ T4 is 187,  so we're finally fixing what they broke.  Problem is, the doctor never posted my results and hasn't sent me a message about calling in a reduced dosage.  His office closed 1 1/2 hours ago and is closed until Monday.  

I have about a weeks worth of 50 mcg left and think I should cut it in half for the next three days.  

I REALLY dislike this doctor!  What would YOU do?  

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12 Replies

  • Posted

    Hi Diane,

    Well my first thought is to change your doctor. It's so important to have a doc that is going to somewhat interested ! Eh ?!! 

    What I can never understand is that the although the government realise that thyroid disease is serious and give one  free prescriptions on being diagnosed ; but the treatment can be somewhat patchy by the medical profession which can have a deleterious effect on well- being.

     Hope you find a better doc.

    Regards 

    Tricia 

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    • Posted

      I've been trying to get in with another doctor that has treated a number of my friends who have thyroid problems or removal of their thyroid. He's a Family Medicine guy with a few specialties.  Since Jan. they've told me, call back in a month.  I called my otolaryngologist who is watching my thyroid. He's good friends with this doctor since they were teen neighbors and asked him to refer me.  Nothing yet............  

      I called the pharmacy to see if anything had been called in and the pharmacist kept saying she was so, so sorry.........  

      Diane

       

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    • Posted

      Hi Diane ,

      I'm so sorry you're having such a bad time. I hope and pray it will be sorted out for you soon .

      Regards

      Tricia

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  • Posted

    GET ANOTHER DOCTOR! 

    At this point, do whatever you feel is right, because really, they should have started you on either 12.5 or 25. 

    They started you on a dose of 100? That’s way too high and will cause problems. You have to start low and gradually increase to avoid the problems you encountered. 

    How often are they testing you? It takes a full three months for a dose change to level out. If you test before then, you get wonky numbers. 

    Docs should know this. If they don’t, you need to get a new one. Try an endocrinologist. Try one out. If you don’t like them, keep shopping until you find one you feel is knowledgeable, listens to you and works with you.

    Hope you feel better soon!

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    • Posted

      I actually read that testing should be done at 4 to 8 weeks until a normal value is achieved. 

      I wish I'd known SOMETHING about thyroid problems before I took the first pill.  I was on 100 mcg for 2 months when I got an appointment with an internist/ family med guy.  By then it was really messed up.  

      I sent an email this a.m. because the test results are still not on the hospital 'my chart'.  I broke the 50 mcg in half and took that.  

      QUOTE: When first initiating treatment with thyroid medications for hypothyroidism, guidelines recommend testing thyroid function about 4-6 weeks after the start of the treatment to determine if the dose of medication is correct. It may be prudent to run these tests sooner and more often if the person was severely hypothyroid, hyperthyroid, or experiencing symptoms of either.  END QUOTE

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    • Posted

      Sounds like you’re on a steep learning curve. Read as much as you can here. Also read up on the side effects of jevothyroxin do you know early on if it’s causing you problems.

      There are many posts in this site and various thyroid groups. Read as much as you can.

      People have posted about alternative meds, treatments, causes,  symptoms, diet, you name it. 

      For example, I was able to reduce the calcified portion of my cyst (after 18 years) using borax therapy. The Levo was horrible for me and made it so I was so sick, I can’t take any thyroid meds. So I did some research and tried amino acid therapy.  It works.

      You can take advantage of other peoples’ experience and research. We’re all happy to share. Really, I figure if I can help others avoid the pitfalls I encountered, then at least theres something positive that comes out of my years of suffering.

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    • Posted

      Thanks Catherine, etc.  

      I had my blood work for tumor markers, etc. on Wednesday and will have my CT (w/o dye) and an MRI on Tuesday.  I've been reading and learning for 9 plus years since my first dx with cancer (colon) and know so much now.

      I had a rash and I had a few (very few) sleepless nights and a few palpitations.  Had some muscle aches in my thigh too but those all went away as he reduced the dosage.  

      I take no other medications.  

      Once I get my lab tests back for tumor markers (CEA can be elevated by hypothroidism and will not go down for 4 to 9 months after a 'normal' range has been reached. Same thing with cholesterol), I'll start 'learning'.  

      Diane

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    • Posted

      I won’t do any sort of dues, radioisotopes, etc because I’ve already got low thyroid function and don’t want to worsen it with these tests. I’ve found the ultrasound and a good biopsy to be plenty effective. 
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    • Posted

      My tests are for follow up from Stage III Colon Cancer and a met to my liver 3 years later.   I've had AT LEAST 20 CT/ MRI's, many ultrasounds and 7 PET scans, but the scans found the liver met when it was the size of a dime so well worth it.  

      I've been dealing with the follow up of cancer for 9 years 3 months now.  

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  • Posted

    Update:  My tumor markers had dropped over 50% and well into the normal range, which is great news.  Hypothyroidism can cause false high readings of CEA and take 4 to 9 months to return to a true value.  My cholesterol had returned to good numbers except a slight elevation in LDL. Also can be caused by hypothyroid. 

    I saw the doctor a week ago today and he reduced me to 25 mcg and will retest in 8 weeks, then see me in 9. 

    He complained about my weight and I explained how hard I'm trying to eat only small portions of healthy foods. My knuckles are enlarged.  I can tell because my rings spin round and round but I can't get some of them on or off due to the knuckle. I can't wear my wide wedding band.  

    I've read all I can find on how to lose weight without drugs or surgery.  I've gained 20 lbs in one year and that and feeling cold all the time was why I asked for my thyroid to be checked. 

    Any weight loss suggestions? 

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    • Posted

      Hi Diane, I’m pretty much the queen of dieting. However I’ve had a horrible time after taking the levothyroxin. All my old diet tricks were useless... 

      This sounds completely counterintuitive, but I did a white rice fast. Meaning a tablespoon of rice at each meal time for about four days. As I reintroduced other foods back in, I used digestive enzymes. I dropped a ton of water weight before even weighing myself, as it seemed so hopeless and looking at the massive weight gain and ballooning is just demoralizing and depressing. I figured I may as well get the body to a stable place without all the bloating bwfore I weighed in and all. Well, this funky white rice fast did the trick. I’ve lost ten pounds since I weighed in. If I start feeling icky, meaning digestive issues, I go back to the white rice, I’ve also found digestive enzymes to help as well as turmeric and bromelin, as it keeps the gut and other inflammation down. 

      In the past, my best success was a glutenfree Paleo style diet. 

      You also have to make sure you’re getting enough vitamins and minerals, so some good quality supplements and even vitamins B shots can be extremely helpful towards weight loss. 

      Last, with thyroid disease, metabolism is slow, so you can’t rely on typical calorie charts. You just have to figure out what works for you, which is likely a lot less than the charts.

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    • Posted

      Hi Catherine,  I have no tummy issues and if I remember correctly, Tumerin is contraindicated if you're taking daily aspirin.  That might be wrong, tho.  I know it was that or another spice.

      I meant to ask my oncologist about Vit. B.  All my blood work was perfect.  He runs a special CBC but also a huge chem panel every 6 months.  

      My TSH was .222 and my T4 was around .188 (?) so my dosage was reduced to 25mcg.  

      In the last week, I've started not sleeping well and having vivid dreams that I think are nightmares but when I wake, it's something silly like buying the wrong kind of ice cream.

      I have 2 fingernails that are sore in the area under the nail as if I'd opened a pop top can (might have done that).  I did use my nail to scrape off a label yesterday and had stubbed my index on a cabinet the day before so it could be all from trauma OR a combo of trauma and hyperthyroid.  Nail lifting is a side effect of hyperthyroid and fixes itself as the thyroid normalizes.  I do go to the nail salon about every 3 weeks for SMS powder.  

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