# Levoxyl and Cytomel question



## snh1971 (Apr 1, 2015)

So, I saw my endo today and looks like I will be definitely needing a new doc. I was so annoyed when I left there, I didn't realize my lab sheet wasn't included in the paperwork I was given. I will be getting a copy tomorrow.

So, I am currently on 50mcg of Levoxyl and 15mcg of Cytomel, which I take 3 times a day.

November 2014 labs:

TSH 0.77 range 0.35-4.00 uIU/mL

Free T3 2.44 range 2.30-4.20 pg/mL

Free T4 0.92 range 0.89-1.76 ng/dL

For last week's labs, she did show the paper to me, and I believe my TSH was about .44 and the others were close to the above, but she did say my Free T4 had dropped a little.

I told her that I had lots of symptoms--cold hands and feet, low libido, bad mood, no motivation, hair breakage, constipation, neck pain, and more. She told me my lab results are "wonky". So, even though she's told me before that she treats per symptom, she states that my TSH is low, therefore my brain thinks it's getting enough thyroid hormone and things are fine. I asked her to raise my Cytomel and she refused, stating that she never prescribes more than 15 mcg unless it's a cancer patient, and even then she reduces them back down to 15 quickly. I did argue, saying that the manufacturer's website even states dosage for mild hypo can be between 25-75mcg, but she was adamant that it was for cancer patients only. I know what I read, and cancer wasn't mentioned. She did offer to raise my Levoxyl to 75 mcg but would then reduce my Cytomel to 10mcg. I refused. So, I am stuck at status quo and quite pissed about it.

I also have multiple nodules, which I mentioned on my newbie post and I also typed out the report there. Last time I saw her, my neck hurt and she basically said to get used to it. I told her it went away when she upped the Cytomel from 10 to 15, but that it recently started to hurt again. She gave me an order for an ultrasound, saying I'm not due until June but I could go anytime now.

She also thinks I should see a rheumatologist for my swelling, since I also have MS. I was tested for that 3 years ago and the results were negative. I know that can change, but ugh. She also told me that there's new research going on for a female Viagra type pill so I could look forward to that. I mean, really? At least she didn't try to give me an antidepressant. Ugh.

So, if I wanted to increase my Cytomel to 25, how would I do that....add 5 for a week and then another 5 the next week for the total of 25?

Thanks in advance!!


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## Octavia (Aug 1, 2011)

Rather than doing this on your own, which can be dangerous, how about finding your new doctor first, then coming up with a new plan together?

I wish your existing doctor would have been willing to raise your Levoxyl without decreasing your Cytomel.


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## Andros (Aug 26, 2009)

Not a good idea; you need doctor supervision and frequent lab tests for this process. Plus, how would you get the cytomel?

Hugs,


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## snh1971 (Apr 1, 2015)

I don't plan to do it on my own, no worries! I should have said that I wanted to know so that when I find a new doctor I could mention it up front.

I am disappointed that my doc wouldn't even consider it. I just called the nurse for another doc in the same practice, and the nurse said that this doc does prescribe Cytomel at 25mcg or higher levels, in patients without cancer. So, I may switch to her for an appointment and see what happens. I was also thinking of trying to contact her and ask her to look at my current labs and see if I can switch to her now. Same practice so it should be easy.

Thanks for the input!


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## Octavia (Aug 1, 2011)

Honestly, I think you could use a bump up in BOTH of your thyroid drugs. You're at the bottom of the range on both counts (Free T3 and Free T4).

Good luck with the other doc. Approach it carefully and tactfully...the new doc most likely won't want to hear or say anything negative about one of his/her partners in the same practice.


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## Lovlkn (Dec 20, 2009)

> Same practice so it should be easy.


Won't work - if they are in the same practice they back each other up most if not all times.

You need to find another doctor out of that practice. I was seeing up to 3 at one time. Its amazing how you get the drugs you need when you see multiple doctors.

Go to a new GP and tell them what you are taking (what you want to be taking) and ask to have labs in 4-6 weeks. Of course tell them you need prescription refills. This way you are not self treating and under the care of a doctor.


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## snh1971 (Apr 1, 2015)

I am hoping it will work...I plan to call the nurse and ask if the other doc would take a look at my chart for a second opinion. If she won't, then I'll try scheduling an appointment with her. I already have a message in an office an hour away, also. Never thought about switching GP's....I don't like my current office so it's a valid thought. I live in a very small area, and most of the offices are part of the same group and now that they are all electronic, they can see everything from every related office. So, to find an office outside of that group may prove difficult, but I'm going to start looking.

Thanks for all the info! On my way to go get the lab results...


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## Lovlkn (Dec 20, 2009)

> .I plan to call the nurse and ask if the other doc would take a look at my chart for a second opinion


Same group = same opinion.

You need to get out of that practice or supplement another doctor in addition to this practice. Eventually, you will find one willing to treat you properly.


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## snh1971 (Apr 1, 2015)

You are probably right. I went ahead and scheduled an apt with my current PCP, since they had an opening next Wed amazingly. I've never seen this doctor, but she's a DO which I prefer. I did find another local PCP that was mentioned on another thyroid board. I tried to make an apt but they require you to come into the office and fill out new patient paperwork before they book you. The office is 35 minutes away, so I'll have to make time to drive down there during their office hours. They won't mail or email the forms which is frustrating.

Picked up my labs from last week:

TSH 0.44 range 0.35-4.00 uIU/mL

Free T3 2.74 range 2.30-4.20 ng/dL

Free T4 0.85 range 0.89-1.76 ng/dL

Thanks for reading!


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## Andros (Aug 26, 2009)

I would switch doctors. The one you have does not want you to feel well. I think it would be worth the drive to be honest with you. Your FREE T3 is sorely lacking.

This is a terrible situation to keep a patient in. Unconscionable, truth be told.

Please let us know if the change works out for you; you cannot go on like this.

Hugs,


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## snh1971 (Apr 1, 2015)

Thank you. I was pretty miffed when she refused to listen to me and kept giving me excuses why she wouldn't increase my cytomel. Even telling her the manufacturer website disagreed with her didn't work. I'm ready and willing to keep looking and drive however far I need to get the proper dosage. I appreciate everyone's support!


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## Andros (Aug 26, 2009)

You have our support. Too bad we all can't gang up in person!

Hugs,


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## snh1971 (Apr 1, 2015)

LOL you got that right!

The other endo office called me back and won't accept patients without a doctor's referral....so I've added that to my list for Wednesday's PCP apt. I'm making a list of the blood tests I'm going to request, since the other endo wouldn't add anything. I think I may have a gluten issue, so that's going on the list as well as candida, ferritin, magnesium...I'll have to go back and reread the post about recommended tests.

Thanks again everyone!


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## snh1971 (Apr 1, 2015)

Okay, so a little update. Had an apt with my PCP this morning, same group as the endo so I knew I wouldn't get far. She immediately told me she has to defer to the endo regarding thyroid meds, and commented that my TSH shows I am over medicated. HA! She could see the labs with my Free T3 and Free T4 but didn't comment on them, even after I informed her they were on the low side. She questioned why I didn't change meds with the endo, and I told her how I felt so much better with the T3 addition that I didn't want to decrease it. I even explained that the dosage wasn't correct which is why all my symptoms are returning full force. I went over my list of complaints with her...she told me that many of my symptoms could be unrelated to my thyroid....ugh. She asked if I think there's a possibility that I have sleep apnea, since I wake up in the middle of the night and don't feel well rested. I may be overweight, but I don't snore and I tend to wake up at the same time each night. She did feel my thyroid area and even felt my hair, which she said felt exactly like an over medicated thyroid patient's hair. I told her my hair has been very thin and fine since birth, it runs in my family but she didn't really believe me. I reminded her that I didn't have hair loss, but hair breakage. Ugh.

Anyway, two good things came out of the appointment. She is sending a referral to Hershey Endo, which is the other office I called, but found out they make apts by doctor referral only. So, now I have the referral. I also told her I had concerns of gluten sensitivity, and she's referring me to a GI practice to look into that. Hoping I can get into both quickly, and still looking for a new PCP too. Thanks for listening! I appreciate the opportunity to vent!


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## Lovlkn (Dec 20, 2009)

Isn't this fun?

Certainly it needs to change.

HOW? HOW can we change the way medical professionals treat Thyroid patients?

Hearing the stories day after day about how doctors who are SUPPOSE to KNOW - simply have no clue.

I am off my soapbox.

Thanks for reading.


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## Andros (Aug 26, 2009)

It looks like you could use an increase in that Cytomel. Your TSH has little value for titration purposes when the patient is taking exogenous T3.

Your FREE T3 is too low.

You have had an ultra-sound of your thyroid; correct?


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## snh1971 (Apr 1, 2015)

Yes, I have had three ultrasounds and have the results. They show that the nodules from the first have grown and that I have many more. I posted the results to the most recent one under my post in the Newbie section. The only good thing my current endo did at my recent apt was to give me orders for another ultrasound instead of making me wait until 2016 like she originally told me. I also heard back from Hershey Endo and have an apt on May 1, and the GI called and I see them on April 28. I am surprised that both can see me so quickly....I am used to longer waiting times to see specialists.

If the doc at Hershey can't help, I found two functional medicine doctors within an hour away and I plan to contact both offices to see what they can offer. The one has a large price tag to cover the first two visits-- $680--but they will help to fill out insurance reimbursement forms. The other doesn't list any prices but their website has very detailed thyroid info.

Hoping Hershey goes well, but we'll see. I'm not keeping my hopes up!


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## snh1971 (Apr 1, 2015)

Okay, so the Hershey endo has drunk the TSH Kool Aid...refused to increase my meds at all, explained TSH and how it's the most wonderful test etc., and when I disagreed with him, he even had me read part of an article online that I should believe since some guy from Harvard wrote it. I point blank asked him why he was treating based on numbers and not symptoms and then he started saying it wasn't him, it was what the thyroid experts say. Told me some story of some woman in Florida that died from T3 meds. Blah blah blah. Reminded me of my first endo. No new testing, he doesn't think I need it. He didn't care that my Free T3 and Free T4 were low....so there I was, thinking I was already firing another endo. For some reason he then asked if I wanted to keep my meds the same, and I said NO they are not helping. He then says that since I am already on a T3/T4 combo, I can try Armour. It was very strange...like he really didn't want me to take it, but offered it anyway. So, of course, I said YES! He obviously didn't know how to prescribe it, and I now have a brand new bottle of Armour 60mg. He wants me to do bloodwork in 6 weeks to see how things are.

I had to look up the dosage as compared to Levoxyl and Cytomel, and it looks like he has increased my dosage....the conversion charts I have looked at all show that 60 mg is considered 1 grain, which equals 100 Levoxyl and 25 Cytomel. Well, I'm currently on 50 Levoxyl and 15 Cytomel....so was he really that dumb, or giving me what I wanted by acting dumb? I just don't get it.

So, do I just switch and start the Armour tomorrow? He gave no directions, and I was so annoyed with him that I didn't ask, thinking that I wasn't going to take it. But, now that I know it's an increase, I'm thinking I will. Any advice on how to take it, morning or evening, etc?

Thanks to all for their advice on here; it's nice to know I'm not alone!

Now, I also need to schedule my thyroid ultrasound and see if there are any changes.


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## fttfbass (Jan 8, 2014)

snh1971 said:


> I had to look up the dosage as compared to Levoxyl and Cytomel, and it looks like he has increased my dosage....the conversion charts I have looked at all show that 60 mg is considered 1 grain, which equals 100 Levoxyl and 25 Cytomel. Well, I'm currently on 50 Levoxyl and 15 Cytomel....so was he really that dumb, or giving me what I wanted by acting dumb? I just don't get it.


1 grain of Armour contains 38mcg of T4 and 9mcg of T3. So, it is actually a decrease. If your Endo worships the TSH test, I'd recommend finding a new doctor. This doc is going to keep you undermedicated regardless of how you feel.


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## snh1971 (Apr 1, 2015)

Ok, that's much different than the chart I saw online. I definitely will not be returning to the endo...he's not any better than the one I saw locally, so I'm not about to drive an hour each way to listen to the same ignorance!

I was able to schedule an apt with a new PCP on May 21. She is listed on another page as a doctor who listens and does all the right tests, and prescribes by symptoms. I wish I could have gotten in sooner, but she is going on vacation next week. So, should I just hang on to the Armour and continue to take my Cytomel and Levoxyl and see what she says, since the Armour will be decreasing my meds? If she can't help me, my next move is to schedule with one of two naturopaths I found, both an hour away and very expensive.


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## snh1971 (Apr 1, 2015)

Hi everyone! So here's the update....I decided to go ahead and switch to the Armour 60mg starting on May 2.

Yesterday, I had my apt with the new PCP that I found listed on a couple thyroid boards. She was okay...she did listen, but told me that I hadn't been on the Armour long enough to tell any differences. She also said that my labs were "strange" and that my numbers were within normal range, or very close to it for the Free T4. I told her yes, but for optimal treatment I should be in the upper half...not sure she liked hearing that, but she didn't respond negatively. She told me that she typically tests TSH and Free T3. She only tests Free T4 if the others don't look good. She did have my antibodies testing results from last summer, which were normal, but she wouldn't order new ones. I realized just now that I don't have those results, so will have to get them. She did offer to do the tests now instead of waiting for the full six weeks, but didn't seem to really want to do it. She asked if my insurance would cover it...I told her it would and she said some insurances only pay for it twice a year. Whatever! So, I did the labwork today and will await results. I am hoping she will go along with me and up the dosage...if not, it means I've exhausted all resources within an hour's drive in all directions. Sounds like she is looking for an increase in my TSH to increase dosage, so I don't have my hopes up


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## snh1971 (Apr 1, 2015)

Something else to add...I got up yesderday at 6am. My temp at 7:45 at the doc's was 96.20...nurse commented that everyone was cold since it was in the 50's that morning. Told her that for as long as I can remember, my temp has never been normal. I recently read that it's typical for hypo. Hmmmm.


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