# 'Newly' hypo - dosage issues?



## lindsayanne0 (Jan 19, 2011)

My doctor (a DO) ran a TSH and free T4 in November and said that I was hypo. She said my free T4 was on the low side I believe. She put me on a low dose of levothyroxine (25 mcg) and asked I come back in 6 to 8 weeks to retest.

I had gone for months from doctor to doctor convinced something was wrong with my thyroid. I was told it was 'just womanly hormones and getting older', it was depression, I was just too over weight, etc. So, when this doc finally acknowledged what I knew was right it was such a relief and I was hopeful.

Symptoms before she diagnosed me included FATIGUE, rapid weight gain, irritability, constipation, irregular periods (even tho I was on the pill), brain fog...

Since starting the meds, I HAVE noticed there are days they I really do feel energized and great...for most of the day. Usually, I'll still kind of peter out around 4pm. I still have 'downer days' though. My nails grow easily, too...til I bite them off. 

Some things I've noticed still going on:
- I shed a lot of hair. It's kind of embarrassing to have to clean the hair off of my office chair at the end of the day!
- I have started having the WORST heartburn EVER! It must be acid reflux. I started taking some zantac to help it.
- I have started experiencing discomfort when I eat sometimes. Like a sandwich or something. Sometimes I'll eat them and it feel like my esophogas is barely letting it go down. It's like it's stuck but slowly moving down. Weird.
- When I first started the meds, I had my period and it lasted a whopping 12 days. Ugh! And then, I skipped the next one and haven't had one yet...

I go in this week to have more bloodwork done to see where things are at. I'm pretty sure these are all signs that I'm definitely not at the right dosage. I'm scared that with starting so LOW (25 mcg) it's going to take my doc FOREVER to be willing to increase it to where it needs to be. I dread the 6 to 8 weeks in between each dosing change to finally get there!


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## northernlite (Oct 28, 2010)

I am also a newbie 2 months into treatment. I started at 50 mcg and felt about 80% better at my first 6 week recheck. My TSH and FT4 were within the normal range and my doctor was satisfied. I was not because I could feel the improvement the 50 mcg gave me and was anxious to recapture that additional 20% of energy and stamina. Afraid of an overshoot, we only went up another 12.5 mcg (1/2 a 25 mcg tablet) to a total of 62.5 mcg. I am just a little past 2 weeks on that and I can honestly say I feel the difference and I am starting to feel really good! I am hoping this is it for me and that my numbers don't make the dr nervous. I have no signs of hyper and almost all my remaining hypo symptoms are going away. Although there is no telling what the right dose for you is, it may not be as large a number as you think and it might not take you too long to get there.

That "petering out" was the main symptom that told me 50 mcg wasn't enough for me. It moved until later in the afternoon but I wanted to eliminate it and I see that happening the last few days on my new dose. Also before treatment I would crash and want to go to bed around 7, on 50 mcg that moved to 8-8:30 and now I can stay up after 9:00! I feel like such an adult again!

It is a slow process but it is the right way to do it to work your way up.


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## Andros (Aug 26, 2009)

lindsayanne0 said:


> My doctor (a DO) ran a TSH and free T4 in November and said that I was hypo. She said my free T4 was on the low side I believe. She put me on a low dose of levothyroxine (25 mcg) and asked I come back in 6 to 8 weeks to retest.
> 
> I had gone for months from doctor to doctor convinced something was wrong with my thyroid. I was told it was 'just womanly hormones and getting older', it was depression, I was just too over weight, etc. So, when this doc finally acknowledged what I knew was right it was such a relief and I was hopeful.
> 
> ...


While the titration process in not pleasant, thank goodness and anything else you wish to thank that you got diagnosed. Many of us have had a horrible time of even getting that far!

That said, "Your doc sounds awesome!" Lucky you.

I would like to suggest that you get a ferritin test. Your ferritin should be 50 to 100; the closer to 100,the better. That could possible account for massive hair loss. TD and low ferritin seem to go hand in hand.

Ferritin http://www.thewayup.com/newsletters/081504.htm

Have you had any antibodies' tests done?

Welcome to the board!


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## lindsayanne0 (Jan 19, 2011)

No, I haven't had any antibodies tests done but will definitely mention to her the next time I go in.

Northernlite - thank you for the feedback. That calms my worries a little bit that maybe I'm not as far away as I think I am. You sound just like me.

I went in yesterday to have my bloodwork done. Now the fun wait for it to come back and then I'll head in to see my doc again. Thanks for the info on the ferritin! I'll check into it!

Thanks all!


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## Andros (Aug 26, 2009)

lindsayanne0 said:


> No, I haven't had any antibodies tests done but will definitely mention to her the next time I go in.
> 
> Northernlite - thank you for the feedback. That calms my worries a little bit that maybe I'm not as far away as I think I am. You sound just like me.
> 
> ...


Suggested tests.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html


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## lindsayanne0 (Jan 19, 2011)

I got my lab results back today. The assistant at my Dr.'s office called me at the office to tell me my 'thryoid tests came back and it's fine'. Huh!?!? I had her fax them to me:

TSH - 6.76 H (range .35 - 5.09)
T3 - 121 (range 80-190)
T4 Free - 1.0 (range .8 - 1.8)

Ummm...did she not see the first number? Did the doc even see the results before the assistant called me?
I called and set up an appointment with the doc to discuss the results.


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## northernlite (Oct 28, 2010)

That is amazing, those labs are clearly still hypo. You need a medication increase. Your TSH is above the range and that is a high range, under treatment the goal is something like 0.3-3.0 and a lot of people on this board shoot for 1-2. I had a medication increase at a TSH of just over 2 two weeks ago because, as I detailed above, I still had symptoms.

Your FT4 is not even midrange. My FT4 has been in the normal range even at diagnosis and I still was very symptomatic.

Unbelievable that they told you normal...keep being your own advocate and get the increase you need. No wonder you are still so symptomatic on 25 mcg. Time for an increase to 50 mcg!


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## lavender (Jul 13, 2010)

I concur. Your TSH is clearly hypo per the lab's range (which is pretty high, I believe 3 is the target upper range for someone being treated foy hypothyroidism as per the AACE's guidelines)

Also, they ran your T3, not Free T3, which is a more accurate test. It could be that your Free T3 is low. Your T4 is also barely above range. If you have been on your current thyroid dose for 6-8 weeks, your TSH has had enough time to adjust to that dose and should be accurate.

From your post, it looks like you have been on your dose at least that long. High TSH indicates hypothyroid. In my humble opinion, Not treating someone who is hypothyroid is just cruel. Telling someone their levels are fine when they are clearly hypothyroid is unconscionable.

I felt like a zombie when I was undermedicated. No, not even a zombie, because they can get up and walk. I could barely get off my couch and felt more depressed than I ever imagined possible.


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## Andros (Aug 26, 2009)

lindsayanne0 said:


> I got my lab results back today. The assistant at my Dr.'s office called me at the office to tell me my 'thryoid tests came back and it's fine'. Huh!?!? I had her fax them to me:
> 
> TSH - 6.76 H (range .35 - 5.09)
> T3 - 121 (range 80-190)
> ...


Fine for who?? Oh,my gosh! This doc needs to titrate your med upward a bit and keep at the titration process about every 8 weeks.

Truth is AACE recommends that the range for TSH be 0.3 to 3.0 and others say even less so you are waaaaaaaaaaaaaaaaay hypo.

I hate she did not run Free T3 but even the 
Total 3 reflects the fact that you are undermedicated as T3 is your active hormone.

Hopefully you are going to call and insist on more thyrxoine replacement? If she won't do it, you will have to find a doctor who will.

I am sorry to say this; I feel for you.


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## lindsayanne0 (Jan 19, 2011)

I am almost in tears reading your posts this morning. I honestly think my lab results weren't even put in front of my doc. I highly suspect that either her nurse or just the office assistant called me with them. I had the blood draw on Wednesday and they called me at 3 yesterday. I don't even think my doc was IN yesterday. So, I have to give her the benefit of the doubt until I sit down and talk with her.

I called and set up an appointment but can't get in to see her until Feb 1. Ugh...the waiting. I guess I've gone this long this way, I can wait another week... I'm going to call today and leave a message for her nurse requesting my file be placed on my docs desk for review if it hasn't already.

Thank you thank you thank you thank you!!! I cannot even tell you how much your feedback means to me.

~Lindsay


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## Andros (Aug 26, 2009)

lindsayanne0 said:


> I am almost in tears reading your posts this morning. I honestly think my lab results weren't even put in front of my doc. I highly suspect that either her nurse or just the office assistant called me with them. I had the blood draw on Wednesday and they called me at 3 yesterday. I don't even think my doc was IN yesterday. So, I have to give her the benefit of the doubt until I sit down and talk with her.
> 
> I called and set up an appointment but can't get in to see her until Feb 1. Ugh...the waiting. I guess I've gone this long this way, I can wait another week... I'm going to call today and leave a message for her nurse requesting my file be placed on my docs desk for review if it hasn't already.
> 
> ...


And I cannot tell you how much you mean to us. Many of us who are regular posters have been exactly where you are now. So, we do understand.

We will help you best we can. I wish I had a magic wand; don't you? Make all the troubles go away?


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## lavender (Jul 13, 2010)

I totally want the magic want to make all the doctors be perfect and treat us like they care!

by the way, I too was told I was depressed and prescribed anti-depressants when my thyroid levels were low. My magic wand was firing that doctor and finding an alternative medicine doc who was willing to address my thyroid levels. Magically, my depression has disappeared.


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## lindsayanne0 (Jan 19, 2011)

I'm still unpatiently waiting to get in to my doc. In the meantime, my body is constantly playing games with me. And yet, I realize that even when I go in to the doc on the 1st, it isn't going to make it all go away. I'll have to KEEP being patient to wait for my body to react to the new dosage (IF she increases it).

My mom asked me yesterday what it felt like. I told her that it's like waking up every day with a combination of a hangover and fighting the flu but toss in throwing away little wads of hair every morning but still being required to normally function at work, mothering, and being a good wife. Yup, that pretty much sums it up. This morning I woke up and my right eyelid is all puffed up....I look lop-sided! Ugh! BUT I feel a little less [email protected] than I did yesterday.

I've gone back and forth on whether I should ask my doc to refer me to an endo or not. I like my doc and I don't want to offend her. AND she is the only doc I was able to even get to acknowledge I had a problem so I'm a little nervous about going to someone else. But at the same time, I'm not sure how knowledgable she is about thyroid stuff either. She's a DO, and not an MD...but that's neither here nor there. I do think that if I stay with her (and even if I don't, I guess), I'm going to need to start educating myself as to what needs to be done.

I'm thinking of checking out some books at the library. I want to see what supplements I can take to help things out. Anyone have a book in particular they would recommend?


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## McKenna (Jun 23, 2010)

> I told her that it's like waking up every day with a combination of a hangover and fighting the flu but toss in throwing away little wads of hair every morning but still being required to normally function at work, mothering, and being a good wife


I've explained it the exact same way to people! It's like the worst hangover you've ever had along with the body aches like the flu.

As for a good book....I highly recommend The Thyroid Solution by Dr. Ridha Arem. It's the best one I've read that addresses the thyroid and mental symptoms. He also is a big believer of T3 in conjunction with T4 meds.

I have a DO too, and usually seek them out as doctors because they tend to look at the whole body working together. I don't think your doc should be offended if you want to see an endo. Endo's are specialists in the endocrine system. It would be the same if you wanted to see a cardiologist.

Good luck with your appointment.


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## lavender (Jul 13, 2010)

I really hope your DO is willing to work with you. I did not have any luck with an endo or traditional MD. I now see an MD in an alternative medicine practice, which is so much better for me. I was told that DOs are more willing to think outside the box with thyroid, but don't have much experience with them myself.


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## Andros (Aug 26, 2009)

lindsayanne0 said:


> I'm still unpatiently waiting to get in to my doc. In the meantime, my body is constantly playing games with me. And yet, I realize that even when I go in to the doc on the 1st, it isn't going to make it all go away. I'll have to KEEP being patient to wait for my body to react to the new dosage (IF she increases it).
> 
> My mom asked me yesterday what it felt like. I told her that it's like waking up every day with a combination of a hangover and fighting the flu but toss in throwing away little wads of hair every morning but still being required to normally function at work, mothering, and being a good wife. Yup, that pretty much sums it up. This morning I woke up and my right eyelid is all puffed up....I look lop-sided! Ugh! BUT I feel a little less [email protected] than I did yesterday.
> 
> ...


Let us know how it goes w/ the DO on the 1st. of the month. DO can be great. I am praying that she is the right doc for you!

That book is great that Mckenna recommended.


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## loretta (Nov 18, 2010)

Hi,
here are a few book recommendations that have been helpful to me.
good luck.

Thyroid Power: Ten Steps to Total Health by Richard Shames, MD

Living Well With Hypothyroidism: What Your Doctor Doesn't Tell You . . .That You Need to Know by Mary J. Shomon

What Your Doctor May Not Tell You About Hypothyroidism: A Simple Plan for Extraordinary Results by Ken Blanchard

Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment 
Janie A. Bowthorpe (Author)


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## Andros (Aug 26, 2009)

loretta said:


> Hi,
> here are a few book recommendations that have been helpful to me.
> good luck.
> 
> ...


4 very excellent books!! Thank you, Loretta!


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## lindsayanne0 (Jan 19, 2011)

Thanks for the info! I grabbed one of them at the library yesterday. I notice that Mary Shomon recommends various supplements. I always worry about spending money on supplements that aren't really going to do anything. I'm not taking anything right now except for my levo and my birth control pill. Should I be taking something else?

I also notice she recommends a few supplements/herbs (Kava kava, zinc, etc) to help with 'lack of libido', if you will. I could really use some help in that department and wonder if anything listed has helped other people. Anyone, anyone....bueller?


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## northernlite (Oct 28, 2010)

Your TSH is high, when you get your medications right and your whole body feeling well, I bet your libido comes back! You will feel like a new woman!!


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## lindsayanne0 (Jan 19, 2011)

I hope so too!!! And so does my hubby!!!! 

As I was getting ready this morning to go back in to the doc, her office called to reschedule as her kiddos are sick. As a mom myself, I had to be understanding, but got a little emotional after I hung up. I just feel like I've been waiting forever! Two more days won't kill me. I've had a couple okay days so...

One thing that has been bugging me for a few weeks or so is this pain under my jaw near my neck. From what I can find, I'm guessing it is lymph nodes? I can feel them and they are kinda painful when I feel at them. I'm not sick or anything. Not sure if I'm just fighting something off or if this is all tied together. I'll mention it when I go in but don't know significant it is at all.


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## Andros (Aug 26, 2009)

lindsayanne0 said:


> I hope so too!!! And so does my hubby!!!!
> 
> As I was getting ready this morning to go back in to the doc, her office called to reschedule as her kiddos are sick. As a mom myself, I had to be understanding, but got a little emotional after I hung up. I just feel like I've been waiting forever! Two more days won't kill me. I've had a couple okay days so...
> 
> One thing that has been bugging me for a few weeks or so is this pain under my jaw near my neck. From what I can find, I'm guessing it is lymph nodes? I can feel them and they are kinda painful when I feel at them. I'm not sick or anything. Not sure if I'm just fighting something off or if this is all tied together. I'll mention it when I go in but don't know significant it is at all.


By all means mention the lymph nodes. And you are so kind to wait for this DO. I think good things are going to happen w/her. Keeping my fingers crossed for you.


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## lindsayanne0 (Jan 19, 2011)

Had my appointment on Thursday. I did confirm that no one bothered to forward my lab results to my doctor. We still have no clue who took the liberty of calling me to tell my "thyroid is fine". 
Anyway, she increased my dosage from 25 mcg to 50. Retest in 6 weeks. She was concerned about the tightness I've been feeling in my throat. She felt my thryoid and said she didn't feel anything obvious to be concerned about. She is having me take an acid reducer in the evening each day for two weeks to see if it improves (to rule out acid reflux as a cause). If no change, she said she wants to have a camera take a look down my throat. Not sure what that all means...

She also said that my labs hadn't changed at all since she originally started treating me in November. She said my TSH was 6 something back then, too. My Free T4 had only gone up VERY slightly. Interesting. I'll be interested to see if the dosage change will get those numbers to change at all.


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## Andros (Aug 26, 2009)

lindsayanne0 said:


> Had my appointment on Thursday. I did confirm that no one bothered to forward my lab results to my doctor. We still have no clue who took the liberty of calling me to tell my "thyroid is fine".
> Anyway, she increased my dosage from 25 mcg to 50. Retest in 6 weeks. She was concerned about the tightness I've been feeling in my throat. She felt my thryoid and said she didn't feel anything obvious to be concerned about. She is having me take an acid reducer in the evening each day for two weeks to see if it improves (to rule out acid reflux as a cause). If no change, she said she wants to have a camera take a look down my throat. Not sure what that all means...
> 
> She also said that my labs hadn't changed at all since she originally started treating me in November. She said my TSH was 6 something back then, too. My Free T4 had only gone up VERY slightly. Interesting. I'll be interested to see if the dosage change will get those numbers to change at all.


Glad you got your dosage increase. We should see some movement in about 8 weeks at which point I hope she has you scheduled for labs?

What did she say about the swollen lymph nodes?


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## lindsayanne0 (Jan 19, 2011)

Yes, she wants me to get labs done again at 8 weeks.

She didn't really seem to be concerned about my lymph nodes... If it keeps bothering me, I'll mention at my next visit, though!  thanks!


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## Andros (Aug 26, 2009)

lindsayanne0 said:


> Yes, she wants me to get labs done again at 8 weeks.
> 
> She didn't really seem to be concerned about my lymph nodes... If it keeps bothering me, I'll mention at my next visit, though!  thanks!


Please address the swollen lymph nodes. There is a reason. Good to hear from you and I hope you are feeling better?


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## lindsayanne0 (Jan 19, 2011)

Not much change yet. I've been tired...but not as exhausted the past couple days as I have been. My hair shedding seems to slowly be decreasing. I'll enjoy the 'new high' while it lasts (if it levels out)! Or maybe this will be the right dose for me? We'll see.


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## Andros (Aug 26, 2009)

lindsayanne0 said:


> Not much change yet. I've been tired...but not as exhausted the past couple days as I have been. My hair shedding seems to slowly be decreasing. I'll enjoy the 'new high' while it lasts (if it levels out)! Or maybe this will be the right dose for me? We'll see.


Have you had your Ferritin level checked? Ferritin http://www.thewayup.com/newsletters/081504.htm

50 mcg. is still a very low dose. I would not be surprised if you end up on about 112 mcg. or so. Titration takes time and it should not stop until the patient is euthyroid (feeling great.)

Please ask for a Ferritin test.


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## Catie516 (Mar 18, 2011)

northernlite said:


> That is amazing, those labs are clearly still hypo. You need a medication increase. Your TSH is above the range and that is a high range, under treatment the goal is something like 0.3-3.0 and a lot of people on this board shoot for 1-2. I had a medication increase at a TSH of just over 2 two weeks ago because, as I detailed above, I still had symptoms.
> 
> Your FT4 is not even midrange. My FT4 has been in the normal range even at diagnosis and I still was very symptomatic.
> 
> Unbelievable that they told you normal...keep being your own advocate and get the increase you need. No wonder you are still so symptomatic on 25 mcg. Time for an increase to 50 mcg!


I am a breast cancer SURVIVOR (emphasis on survivor) only because after being mis diagonosed by a very HIGH level Breast Cancer specialist I went to two other doctors until they finally decided I had breast cancer!!! Point is = YOU are in charge of your health - don't take a receptionist's theory of 'fine' for gospel - get another doc or opinion!!! Good grief!!

Hope all is doing well by now - thanks for the post - I'll be spending all day reading posts b/c finally have found a place that "understands' this crazy thyroid stuff!!!!

Hugs


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