# Hashimoto's Help/Advice



## coldthyroid (Mar 8, 2012)

TSH = 4.24
T4 Free = 1.1
T3 Free = 3.0

44 year old male. Have had Hashi's for four years that I know of. Diagnosed by three different docs, two internists, and an endo doc at Mayo Clinic of Phoenix. I've seen my levels down to 0.16 before with no symptoms. 4.24 is quite high for me. Where should I be? My doc says these latest readings are "perfect". I'm dizzy all the time, light headed all the time, appetite varies. Blurry vision. I just got glasses last summer....and I actually don't think I need them. Long distance prescription. A year ago, I could see like an eagle! And thats no lie. I excersie regularly...great shape, bike 10 miles HARD 5 days a week....6'1" and 203lbs. My weight seems to fluctuate fairly rapidly. Up and down, up and down....

Anyone care to tell me what the heck is going on? My head seems to ring all the time..although it seems my left ear rings way more. I just don't feel good. Taking .88 of Synthroid. I do have .175 dosage available but back in middle of summer my TSH was 0.03, so they told me to take half dosage. Over time, I've degraded to where I am today. Should I go back to the .175? If so, how long will it take for me to start noticing any differences? I seem to have higher blood pressure than normal. 137/88, 140/92, 131/84. It seems to flucuate. Any help here would be wonderful.


----------



## coldthyroid (Mar 8, 2012)

By the way...my head/ears just seem to ring all the time and I always, always have a low grade headache. I monitor my body temp and the day I had my tests done, my body temp was 95.3 to 95.7. I did this with two separate Exergen temporal digital meters. They don't lie.....


----------



## coldthyroid (Mar 8, 2012)

One last thing if I didn't convey it above. There is something wrong here. I'm in the prime of my life and I just feel like crap. If anything, I feel like I'm hyperthyroid...not hypo. Is that even possible? I just don't understand this disease at all. I'm a network engineer and I need to be sharp. I find myself confused all the time, forgetting things. I do feel tired at times, but I barely drift off to sleep and am easily woken and I'm immediately hungry......very weird. Someone reply please. Tell me anything to get me on the right track.


----------



## Negative101 (May 23, 2011)

Do you have the ranges for the labs? 
I'd drop the doctor that told you you're fine with that TSH and symptoms.

Have you at an ultrasound?


----------



## coldthyroid (Mar 8, 2012)

Finally....are reply. I knew someone would see this. Thanks so much for replying. Here are the ranges. Labs done by Quest Diagnostics and are sent to my doc who in turn provides them to me. He basically thinks I'm crazy I think. He recommends someone in the psych community. Its not in my mind...I'm not going crazy. There is something physically wrong with me....

TSH 0.40-4.50 (mlU/L)

T4 0.8-1.8 (ng/dL)

T3 2.3-4.2 (pg/mL)

When you look at these, what specifically stands out to you? No, I have not had an ultrasound. I do have another Mayo visit on April 23 in Phoenix. Going for an array of tests. I've often wondered what would happen if I just stopped taking the Synthroid altogether for 6 weeks. Dangerous? I've got to tell you, there are times when I feel complete dread. Last visit I had, I walked out with a prescription for Xanax. I've taking it some, but it doesn't do anything for me. I can't even tell one iota of a difference. What would an ultrasound be looking for?


----------



## Negative101 (May 23, 2011)

It would be looking for nodules which would need to be assessed for cancer. This isnt stated to scare you, just as a pre-caution that everyone with hashi's should take.

Your TSH is high. Your pituitary is demanding more than what is being put out. Your free T's are in range, but certainly not on the higher side of things (which is what your pituitary seems to be indicating is where it wants things)

Dont stress about the doctor not understanding you. Its a common theme here. You wont be able to "re-educate" your doctor. Your best bet is to find a new one. My suggestion is not a simple GP or even an endo... but a THYROIDOLOGIST.

As for stopping the meds, no one on here will suggest you do so. That needs to be followed and evaluated by a competent doctor who can keep you in check. Personally, I think you're under medicated right now... but Im no thyroidologist


----------



## coldthyroid (Mar 8, 2012)

Well, I would then ask, do my symptoms point to a high TSH? Would I have constant ear ringing, headache all the time, blurry eyes, higher than normal BP, off again-on again appetite, trouble sleeping, sinus pressure at times? How about the low body temp? I mean, my entire head feels likes its ringing. My temp very, very rarely reaches 98.6. I'll be walking around my house and then all of sudden I start sweating....not profusely, but enough to wipe my forehead...just kind of a hot flash. I'll then go take my temp and it's 96.7. I will say I don't typically feel cold. Also, as I mentioned, I do have plenty of .175 Synthroid on hand. Should I try and go back to those? That is the dose I was on when I originally started having issues back in June. I got tested then, and had a 0.03 TSH. I had to go to Urgent Care for that and told them of my Hashi's diagnosis and I told them to check my TSH level. So when it came back to 0.03, they told me to start breaking the pills in half and take them until I could get back in to see my internist.......which I did. He tested me then and it had climbed to 1.55. Said to keep current 0.88 dose. If I go back to that dose (on my own decision), how long will it take to see the effects?


----------



## coldthyroid (Mar 8, 2012)

By the way, I live in Fairbanks, Alaska. We don't have a ton of doctors to choose from. We don't even have an endo doctor here in town. I'd have to fly to Anchorage. Anyone have a recommendation of a thyroidologist out on the West Coast? Seattle? L.A.? Phoenix?


----------



## lainey (Aug 26, 2010)

Have you had any hormone--testosterone, FSH, etc--testing?

How are your vitamin D, B and iron levels?

Is your glucose and A1c normal?

Which antibodies have they run on you and what were the results?


----------



## coldthyroid (Mar 8, 2012)

Well, I've been to Mayo Clinic several times and saw an endo doc. It was confirmed there that I did have the anti-bodies for Hashi's. I couldn't tell you what they were but I have April 23rd appt again at Mayo and am hoping they do full round of tests. I'm guessing when I went in initally for my diagnosis, they would have ran all those tests? My B Vitamin has been checked in the last 6 months by a natruopathetic doc and it was a bit low. So I take a B complex daily. Testosterone? I don't know. Would they have routinely checked that or do I have to ask for it? Its hard to go into a doc, especially at Mayo and dictate to them what to check. I can be frank, that since around this past Halloween, my libido has dropped off significantly. Not to make light of the issue, but up until then, my wife had to jokingly stay away from me....meaning.....my libido was very strong. Then things have just went downhill. I workout routinely....I don't feel weak. I hit the weights fairly hard and I would consider myself in pretty darn good shape for 44 years old. I will say, I feel really good when working out for the most part. About an hour after, I start to slide back into the bad realm. I'm not missing work, but I'm trudging through my days. I wake easily and if I dose off, I might for 10 minutes and then am immediately awake. Back when this all started right before thankgiving/halloween time, it just sorta hit me all at once. However, I couldn't sleep a wink...my head was ringing so bad....and I was so scared. I'm scared now I'm gonna drop at any moment. My heartbeat is rapid. The only solace I get is if I'm not sitting around doing nothing. If I keep busy, I seem to not focus on it, but as soon as I stop and things quiet down, the ringing comes back and it all starts over. Some days are better than others. I sure wish I had those numbers you asked for but I don't. But, I can get them fairly easily via fax from Mayo. I've had complete blood panels done here by my local internist, but I don't know if testosterone is listed there. What would I look for on them? Is it possible to post them out here via a document? Because I have that.


----------



## lainey (Aug 26, 2010)

If they tested your testosterone, it is listed as just that--testosterone.

Ask for it if it has not been run. Tell them about the change in libido. That and the energy symptoms are a change, and you should bring it up.

I would ask to have the thyroid stimulating antibodies tested. The racing heartbeat, having energy and then crashing, difficulty sleeping, changes in appetite can be hyper symptoms...people can have more than one type of antibodies, and sometimes this can cause their levels to be pretty variable.

Not to say that these can't be hypo symptoms. The difficulty is that all of these "cross over" into both realms.

A thyroid ultrasound should be done to see if you have any nodules as well. These can be functional--ie produce thyroid hormone--so it is important to see if you have any.

My experience with Mayo is that they have fairly set standards for the diagnosis and care of thyroid disease--they may not be the best choice if you are looking to "think outside of the box".

As for your records, it is always a good idea for patients to keep a copy for themselves. It's for your reference, and helpful if referring to other doctors when necessary.


----------



## Zugora (Feb 14, 2010)

If you're shopping for a new doc, you might want to check out this site: http://www.thyroid-info.com/topdrs/. Patients only seem to post positive reviews, so you have to take it with a grain of salt. Just scroll down to search by state.

It's not in your head. We all understand the feeling of being unwell and not having a doctor who understands or who can treat you properly. It's a matter of finding the right doc. Good luck.


----------



## Brucergoldberg (May 23, 2011)

Andros told me that you might beed my help. Just to let you know, i have been through everything you have gone through. THere is nothing you have listed that i have not done. INcluding the Mayo visit. I have a blog set up for you to read which is at my bottom post if you are interested.

I am also 44. my **** started aug 9, 2009.

The ringing has everything to do with the thyroid. I don't know what, but it does. id like to say that some days are worse than others, but to me, every day is a bad day with the ringing. I think that when the levels are in control, the ringing gets a little better.

SYnthroid made my ears ring worse. ANd also they made them ring at a louder pitch. Also when i was hyper (my labs were high) the ringing was louder. It sounds like you might be a little on the higher side but I'm not sure. I am the same way. Keep me outside and i can't hear it. Sit me in front of the computer and its horrible.

I take colonzepam as needed and love it. I don't take any whacky dose, I just take a little when things get bad, or I'm ready to kill my kids. There are several of us with the ringing. Doctors will try to put you on anti depressants and say there is nothing wrong with you. But it is your thyroid. If you are looking for other things that may be causing it, ignore all the whacky bullshit you are going to hear from people. SOme examples of what you will hear : too much artificial sweetener, could be from antibiotics, limes disease, hearing loss, loud music, firing guns, ambien, eating gluten, all that stuff is horse****.

When is the last time you had your total testosterone checked?

What is your current dose of thyroid?

How long have you been on it?

WHen you had your last test, how long were you on your most current dose?

you are not alone.... Ive heard it gets better.. and it does a little.

Amy on here had the ear ringing and then had her thyroid out and the ringing went away. I had mine out and it got worse (but coming back down).

SO i can relate to you brother. You are not alone.


----------



## northernlite (Oct 28, 2010)

My goodness, why would ANY doctor cut your dose of levo in half?!?!?!?! No wonder you feel bad, you are hypo. Even though a lot of labs are not using the new ranges the upper value for TSH should be 3.0. You are well above that, I personally would feel terrible with my TSH where yours is.

Your TSH was a out of range on the hyper side and your doctor cut your dose in half, that is insane. He should have titrated downward just like you titrate upward. You need a doctor that will work with you to find the right dose for you.

In the meantime, I would take 88 mcg one day and 175 the next and alternate until you find a new doctor. But I bet even that will be slightly low for you, your correct dose is probably closer to the 175 than the 88.


----------



## coldthyroid (Mar 8, 2012)

Thanks for replying. Glad everyone here is willing to help me. I know there are new ranges, but this doctor goes by what Quest Labs gives him. Today I did take a 175. I may do that for a week and see how I feel. Then go to the alternating as you mentioned. See, back in June 2011, I started to feel weird...not like I do now. But shaky, really fast heartrate, and dumping weight...rapidly. I couldn't figure it out. Some nausea. I had a conference to go to in Vegas, so I went to Urgent Care the day before I left and told him my symptoms and was careful to let the doc know I had Hashi's. I wanted my thyroid checked. So they drew blood but he told me they couldn't get the results until the next day. I said I would be on a plane. He was nice enough to say he would call my cell, and sure enough he did while I was waiting for my connection flight in Seattle. He said my TSH was very low....0.03. This is the doc who told me to break my 175s in half and begin taking half a pill daily. So I did. And when i got back, I got back into my normal internist who had been treating me and he said, stick with it. I have been since last June. I'm thinking the half pills helped at first. Those weird symptoms I had went away. But over time, I think I went way above where I needed to be and it finally caught up to me around Halloween. These new symptoms have been with me ever since. How long will it take for me to start noticing any difference? I feel like I'm feeling good when I'm around 1.55. I use that number becuase I am in fact active in monitoring my blood. I email my doc when I feel the need and he sends in a lab slip to Quest, I go take my blood, and he then sends me the results through his secure Updox site. And every time, I get the "spot on" or "perfect numbers" response. I'm not a doctor so I listen to them. But I've known now for some time he ain't in it to help me. So, I'll go back down to Mayo and have my endo there check me out. I don't feel "sick" like with the flu. I'm off though, I know it, I feel it....I can see it in my eyes....I look tired. My eyes look tired. I seem to be getting good sleep. I can't sleep 12 hours....somehow I wake up and I'm up. Today I went to gym, had a great workout, came home, ate a healthy turkey sandwich, etc. Around 3:00PM today, I got really tired as ususal. Ears starting ringing more intensely, yawning a lot, just tired. Took my BP...which today was suprising good. 126/82. Thats averaged out over three readings on my monitor. It does it all on its own...its accurate. Pulse was 72 so I'm happy about that. But sometime I feel like my heart is working hard....not so much in how fast it is beating, but in the strength of the beats. Sometimes I can feel it in my head...no lie! At night, I get super hungry....really, really hungry. I try to hold off and if I eat, I try to eat apples, carrots, etc.


----------



## Brucergoldberg (May 23, 2011)

same thing happens to me every day. Not one of my questions were answered that i posted so i really can't help you. I have some things that can certainly help you, but honestly i don't know unless you reply.


----------



## coldthyroid (Mar 8, 2012)

Yeah, I'd like to know whatever you can provide. I haven't read your posts but will. I don't have much to offer....I'm really uninformed about this.


----------



## northernlite (Oct 28, 2010)

my experience is it takes me 7-10 days to start to feel and change from a change in medication up or down. It takes weeks to feel the full effect. Usually takes me about 4 weeks.


----------



## Andros (Aug 26, 2009)

coldthyroid said:


> TSH = 4.24
> T4 Free = 1.1
> T3 Free = 3.0
> 
> ...


The tests listed below would sort things out.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

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/

Also, I do feel it is essential to at least get an ultra-sound. Unfortunately men get thyroid cancer too.

TABLE 1
Selected Causes of Tinnitus
--------------------------------------------------------------------------------
Subjective tinnitus

Otologic: hearing loss, Meniere's disease, acoustic neuroma

Ototoxic medications or substances

Neurologic: multiple sclerosis, head injury

Metabolic: thyroid disorder, hyperlipidemia, vitamin B12 deficiency

Psychogenic: depression, anxiety, fibromyalgia

There is much more; please go to the link.................
http://www.aafp.org/afp/2004/0101/p120.html


----------



## Gwen1 (Sep 3, 2011)

Hi, I'm just a fellow forum member, not a thyroid expert. Here is my take on your situation: your symptoms sound like you are undermedicated. And your labs indicate it also with the ft4 being low in range and tsh high.

Given your TSH reading when you were on the 175 mcg., it sounds like that may be too high of a dose. You can't jump from the 88 mcg. to the 175 mcg. It would be too much of a shock on your body. And I'm not surprised you had anxiety when going from the 175 to the 88 mcg. 
Are you familiar with the titration process? Normally the doctor would increase you in smaller increments like going to a 100 mcg. or 112 mcg., then testing your levels in 6-8 weeks and increase again, if needed. It takes time to get to the right level.
How you ever got jumped to the 175 mcg. I can't figure out. It may be that you need 150 mcg. but careful monitoring and incremental dose increases is the process to get you there. 
Just hoping to shed more light on your situation.

Also, Lainey has suggested some good tests to have run. 
Along the lines of blood sugar, hyper and hypo can affect your blood sugar levels, causing your hunger episodes.


----------



## Brucergoldberg (May 23, 2011)

Honestly, I know what he's going through . I go through it too. In fact as i write this I'm going through it right now. Has nothing to do with if your labs are perfect or crap. He takes his meds and then about 4 hours later it hits him like a freight train. I really don't know the answer to this as I'm struggling myself. I hate it. Hate it... Every single day its like ground hog day.

I take testosterone. I do the injections. Do you know your TOTAL testosterone?


----------



## Gwen1 (Sep 3, 2011)

Yes, I was just telling a thyroid buddy of mine how it felt like "Groundhog's day" every day! True story. It's funny you mentioned that.

Four hours after I took the pill, I would get drowsy and want to sleep, but couldn't. I could feel the T4 peaking. Then by evening would feel more normal.

I am in week 8 on the 112's and leveling out, and does not feel so much like that anymore. But the dose is too low.


----------



## coldthyroid (Mar 8, 2012)

Yeah, Groundhog Day.....but the worst kind. Bruce, I just sent you and email. Read through your blog. Figured we could partner up and beat this thing. My attitude is strong and I'll beat it. I don't know my testosterone level but will ensure it gets tested while out there. See, I'm fairly uneducated on it all, but I learn quickly, and I'm learning. As I mentioned in my email Bruce, I took a .175 yesterday taking the advice of alternating between .175 and my normal dosage of .88. Wrong move. I didn't feel the effects of it until today once I got up and went grocery shopping with my wife. I literally felt like I was walking around in a euphoria....no joke. Very blurry eyes, groggy headache, no appetite. Just jacked up in general. Just by this, I'd say too much synthorid at once? My body used tot he .88 and then the .175 my body said NO? It's 4:30PM and I'm a bit better but not much. I'm thinking of not taking any for a while. Say a week? Any thoughts anyone? I mean, normal is .88 and I feel like ****, so I take a .175 and feel even worse? How can that be? I tried this method a week or so ago too...same thing! Except I tried it two days in a row and literally thought on day two I was going to drop to the floor here at work. The only benefit I can physically feel out of the .175, is that is "seems" that my pulse has slowed some. Normal? In my head? Haven't checked my BP today but will later. Got a workout in...10 mile ride on the lifecycle....got pulse to 150. Rode hard and felt pretty good...but always have the fog.


----------



## Octavia (Aug 1, 2011)

coldthyroid said:


> Yeah, Groundhog Day.....but the worst kind. Bruce, I just sent you and email. Read through your blog. Figured we could partner up and beat this thing. My attitude is strong and I'll beat it. I don't know my testosterone level but will ensure it gets tested while out there. See, I'm fairly uneducated on it all, but I learn quickly, and I'm learning. As I mentioned in my email Bruce, I took a .175 yesterday taking the advice of alternating between .175 and my normal dosage of .88. Wrong move. I didn't feel the effects of it until today once I got up and went grocery shopping with my wife. I literally felt like I was walking around in a euphoria....no joke. Very blurry eyes, groggy headache, no appetite. Just jacked up in general. Just by this, I'd say too much synthorid at once? My body used tot he .88 and then the .175 my body said NO? It's 4:30PM and I'm a bit better but not much. I'm thinking of not taking any for a while. Say a week? Any thoughts anyone? I mean, normal is .88 and I feel like ****, so I take a .175 and feel even worse? How can that be? I tried this method a week or so ago too...same thing! Except I tried it two days in a row and literally thought on day two I was going to drop to the floor here at work. The only benefit I can physically feel out of the .175, is that is "seems" that my pulse has slowed some. Normal? In my head? Haven't checked my BP today but will later. Got a workout in...10 mile ride on the lifecycle....got pulse to 150. Rode hard and felt pretty good...but always have the fog.


Normally when people alternate between doses, the amounts are much closer to each other, such as 88 one day, 100 the next. Jumping from 88 to 175 is more than double the dosage, and does not make sense. What lead to that advice?


----------



## Octavia (Aug 1, 2011)

Okay, I went back and read through this whole thread. Looks like 175 is too much, but 88 is not enough for you. I would recommend talking to your doctor and "starting over" with a new dosage, maybe around 112 or 125 mcg, and go from there. Alternating between 88 and 175 is not a good plan...not a good plan at all.

Did I mention that alternating between 88 and 175 is not a good plan?


----------



## Brucergoldberg (May 23, 2011)

octavia, we talked today a little via chat. His FT3 is in low range, but his TSH is too high. He has never had a sonogram either. If he finds the right doctor, my gut feeling is he will need to cut back to about .50 or .75 and add .05 cytomel to start with

his ft3 is 2.3 range 2.3 to 4.1 or something. That is way too low. He is not converting good enough because his tsh is 0.16! (almost zero). In my opinion he needs to be closer to 1.0 or 2.0 on the TSH and higher on the ft3.

His ft4 was a little low too but not horrid. I agree .88 and 175 alternating is a bad plan. hell i can't even bump up .25 without feeling like death.

Hes in alaska so thats a tough one. I told him to call his pharmacy and ask "who in my area is prescribing cytomel" and go see that doctor.

I can't believe he went to mayo and they didnt do a sonogram on him. WTF? really?


----------



## Octavia (Aug 1, 2011)

That might also make sense. (I'm no Cytomel expert, nor do I play one on TV!)

Definitely a different approach is in order.


----------



## Gwen1 (Sep 3, 2011)

> his ft3 is 2.3 range 2.3 to 4.1 or something. That is way too low. He is not converting good enough because his tsh is 0.16! (almost zero). In my opinion he needs to be closer to 1.0 or 2.0 on the TSH and higher on the ft3.


That is good thinking Bruce. When he had those labs done, was he on a steady dose of something? Or had he increased a little before labs? That happened to me when I started with my new endo. I had increased 2 weeks prior to her running labs and my tsh was .26 with the ft4 low in range (no ft3 run).

Just a thought. I hate to see him start trying new stuff if all he needs is an increase in his T4 med.


----------



## coldthyroid (Mar 8, 2012)

Hold on folks....please go back and read my original post. My TSH is NOT 0.16 currently. I posted my labs as of last week on my very first post. My TSH value is high....the number is high. I'm reposting again.

TSH = 4.24 (Range = 0.40-4.50) mIU/L

T4, Free = 1.1 (Range 0.8-1.8) ng/dL

T3, Free = 3.0 (Range 2.3-4.2) pg/ML

As I said, I'm learning about the disease. If my TSH is 4.24, wouldn't that mean I need more Synthroid? This morning, my body temp is 96.2. I'm a bit shaky. Only had one cup of coffee, nothing else. Not much of an appetite. Now, back in April of 2011, my TSH was 0.16. I wasn't feeling bad really. Then in early July I started to feel bad. Went to Urgent Care and got tested again. It was then 0.03. Wouldn't .16 and .03 mean I'm getting too much Synthorid?


----------



## lainey (Aug 26, 2010)

Yes, .03 could mean that you were getting too much medication, your free T4 and T3 may have been okay, but if you weren't feeling well that low, that is evidence enough.

Because you are betwixt and between on your symptoms, taking your numbers back down more slowly is probably a better strategy.

If those are your results on 88 mcg, I would increase it first to 100mcg--that would be one of the 175 mcg tablet per week with 88 on the other days (88x6=528 plus 175=703 which is close to 100/7). Taking 1 extra 88 mcg tab (88x8=704) would also have the same effect.

Just to give you an idea, if you alternated 4x 88mcg and 3x 175 mcg, you would get a daily dose closer to 125mcg. If you did 3x88mcg and 4x175mcg, it would be closer to a 137mcg daily dose.

It's not worth it to overshoot the mark regarding TSH and if you have these meds on hand it will work. Remember, T4 meds have a long half life, so it is okay to calculate the dose that way on a weekly basis.

This because the frees are close to mid range, and some symptoms are mildly hyper. I think ultimately you may increase it a couple of times before you get back to where you were.

When you change doses, you need to maintain that for 6 to 8 weeks and then re-run the lab work to see how the values have changed.

Mayo has very conservative standards for the treatment of thyroid disease that are their own, not necessarily what you see as ACCE recommendations.

You do need an ultrasound, just as a baseline. No rush on that. The other antibodies testing, especially the TSI, may be revealing re: your symptoms.


----------



## coldthyroid (Mar 8, 2012)

So what if I take the .88 like I normally do and then break one up over the course of 1 week. I just can't seem to take the .175 all at once. At least that is what I seem to be experiencing. For example, if I took a .175 this morning (which I did NOT...I took a .88), I wouldn't feel anything until tomorrow but I'd be jacked up all day long....horrible.


----------



## lainey (Aug 26, 2010)

Quarter it. In a seven day period, take an extra 1 quarter one day, skip a day, take the extra quarter another day. This is 1/2 of 175, or the extra 88mcg over the course of seven days. If you can't take the 175, the doubling up on the 88 one day a week won't sit so well either.

This is to use the medication you have (I have done this too in the name of economy also when between doses, especially if I have just filled the 3 month maintenance supply the health insurance made me take). The best way would just be to move to 100mcg pills, but if you can manage it this way until it's time for labs, you'll know if you are moving the dose in the right direction.


----------



## CA-Lynn (Apr 29, 2010)

I've been feeling my best for almost two years now. Here are my quarterly labs for TSH the last couple years [most recent first]:

0.032	0.026	0.122	0.025	0.077	0.233	1.789

Those endo's better start realizing that we feel better when our numbers are very low.


----------



## Gwen1 (Sep 3, 2011)

CA-Lynn: do you take a T4/T3 med. or T4 only?


----------



## Octavia (Aug 1, 2011)

CA-Lynn said:


> I've been feeling my best for almost two years now. Here are my quarterly labs for TSH the last couple years [most recent first]:
> 
> 0.032	0.026	0.122	0.025	0.077	0.233	1.789
> 
> Those endo's better start realizing that we feel better when our numbers are very low.


Your numbers are pretty close to where mine seem to be hovering, and I feel pretty good, too!


----------



## coldthyroid (Mar 8, 2012)

Wow! Octavia....your numbers for TSH are very low....when I look at those, and with little education I have on all of this, those would seem like they would push you to the hyperthyroid range? Am I wrong on that? I know everyone is different, but wouldn't an optimal range be between 1.0 and 2.0? Or am I way off on here? I'm taking the advice. I'm going .88 dosage every day like I have been and with that, I'm going to quarter up another .88 and take an extra quarter every other day and see how things go. I'll give it until end of March. I really like Bruce's idea of supplementing the T3 (Cytomel?) as well. I just have to find a local doc who can prescribe it. I'm done with my internist. He just isn't helping me and bleeding me dry of money. He has no interest. He'd rather perform colonoscopies! Again, my most recent numbers as of last week are below.

TSH = 4.24
T4 Free = 1.1
T3 Free = 3.0


----------



## coldthyroid (Mar 8, 2012)

I know it's corny for a 44 year old male to say this, but I've been feeling so bad lately, and my highlight of the day is seeing that someone out here has replied to my post. I'm happy others understand my situation. Thanks for the help...I'll keep posting.


----------



## lainey (Aug 26, 2010)

Just for reference, because people are sharing numbers, a different example would be my labs (6 month intervals from most recent backward to oldest):

TSH: 3.9, 4.4. 4.9, 5.5(got a dose increase here), 4.1, 3.7

my free T4 and T3 usually run midline in the range.

People would love to jump on these and automatically say that they are "too high". But, they work for me--I am about your age, work out 4 days and keep up with a busy family from 5:30a to about 10p every day.

It is individual, and "optimal" for everyone is different. With the labs you posted last for free T4 and T3, your T3 isn't really showing that you are having trouble converting--it is almost midline just like the T4 (it would be lower int he range, relatively if you were having trouble) so adding extra T3 may not necessarily be the answer. If you increase the T4 medication a bit, those numbers (T4 and T3) will increase together.

Also, don't be afraid to try a different brand of medication. Synthroid is only one. Levoxyl, unithroid and tyrosint are others, and people have different levels of success because each is formulated and metabolized slightly differently. You could get a change in your symptoms and a different lab profile just by making the switch to something like levoxyl, which is reported to be absorbed better.

The internet is a great place for information, but it doesn't really represent the population--you are not likely to hear from people who are doing well, but rather those who struggle for some reason (there are a few like me, who are here to debunk that). Keep that in mind always when you are reading about numbers--there is a level where obsessing over the numbers does not make sense--your mileage will vary, and you will likely feel well over a range of numbers, and not necessarily those that are most heavily promoted online.


----------



## coldthyroid (Mar 8, 2012)

Yes, I do agree with you. Focusing on levels and numbers can really be frustrating. You continue to ask yourself, where should I be? But, everyone is different. I'm smart enough to know that at one time, I was on .175 and doing very well. No issues whatsoever. Plenty of energy, etc. Then back in June is when i started having the problems and cut my dose in half to .88. I've slowly watched my TSH, T3, and T4 change over time. Mayo had me on the .175 dosage and my levels were checked multiple times. In fact, one time I went down for routine follow up work, and my consultative doctor (not my endo) bumped me up actually to .225 which was a lot. I came back about 2 months later and complained I was dizzy. My endo there at Mayo said, yeah, you should be...you're on too much Synthroid. Your consultative doctor should not have bumped you up. You were fine where you were. He bumped me back down to .175. So maybe whatever the issue I had back in June 2011 where my labs read 0.03 and I wasn't feeling good was an isolated incident. Maybe switching to the .88 was not the right move.


----------



## lainey (Aug 26, 2010)

I know that when I get an oddball result, my doc likes to wait a couple of weeks and retest.

Annoying as that may be, it tends to separate out the real problems from a blip on the radar, and has prevented some "yo-yoing" of my dosage.

I will add, that the treatment of thyroid disease is not static. You do need regular follow up because things do change. One dose that works very well for a while can become too much or not enough--as you now know--it is not atypical.

The "journey is the joy" they say......


----------



## joplin1975 (Jul 21, 2011)

Popping in to say that you should also keep in mind that Octavia's TSH (if I may speak for her) is purposefully kept suppressed because of thyroid cancer, so it's a slightly different ball game.


----------



## Gwen1 (Sep 3, 2011)

lainey said:


> I know that when I get an oddball result, my doc likes to wait a couple of weeks and retest.
> 
> Annoying as that may be, it tends to separate out the real problems from a blip on the radar, and has prevented some "yo-yoing" of my dosage.
> 
> ...


So you can't just get on one dose and stick with it? It would be so much simpler. I have heard that if we live in a northern climate (hot summer/cold winter), we may need to adjust down in the summer and up in the winter.

I'm about ready to say fooey on the lab results. They did not help me out when undermedicated for 4 years. Neither did the endo. My ft4 was below mid-range and tsh 1.0 or lower. And I was dragging.


----------



## lainey (Aug 26, 2010)

> So you can't just get on one dose and stick with it? It would be so much simpler.


Consider for a moment that thyroid levels are linked to other hormone levels...for women things change at several times of their lives--puberty, pregnancy, menopause.

Then, biologically we are programmed to have our metabolism "slow" as we age. Studies of the very old have shown that they generally have a slightly higher TSH....

So no, unfortunately, it's not one dose and stick with it.


----------



## coldthyroid (Mar 8, 2012)

Ok Lainey....maybe you can help me out here. This is fairly typical. You've seen my labs, my most recent ones. Got up this morning at 5:20 to get ready to head to gym, then to work. Took my Synthroid which was .88 dosage and another "quarter" pill, on the advice of Octavia. Basically, I'm quartering one .88 pill and adding those "4 quarters" throughout the week. So for tomorrow, I won't do that. I'll just take my .88 pill and thats it. Anyway, good workout, 10 miles on the bike in 33 minutes, and then some good weight exercises after word. Overall, 50 solid minutes of working out. Felt good. A bit groggy but good. Got latte (20oz) and came to work. Around 10:00AM, my left ear starts buzzing...loud. Get shaky, almost nauseous, no appetite at all, more dizzy, etc. This lasted roughly two hours. I'm now back to my normal "not normal" stage. Any guess as to what is happening during these two horrific hours? Is the Synthroid being converted? Is my body just not liking the Synthroid?


----------



## lainey (Aug 26, 2010)

It's not impossible that you are reacting to something in the Synthroid, such as a filler.

Could it be the latte? Caffeine can do that to people.

I would trial taking the Synthroid at a different time--say at night before bed (just make sure you've had nothing to eat for at least an hour before). If it is the Synthroid it will: a.) isolate the synthroid as the cause b.) move the reaction to a time when it might not be so troublesome (hopefully you would be asleep and it would not wake you).

If you think it is the Synthroid itself, you should consider a trial of Levoxyl (or another brand), which has a reputation of being more easily absorbed and better tolerated by patients who report trouble with Synthroid.

Does it happen on days when you don't work out? You could also be having some post-work out stress. For example, you could be having a blood sugar change or electrolyte change--have you tried tweaking what you eat before your workout--a light carb, an electrolyte drink for example? The same would go for post-workout--are you eating a breakfast then, hydrating yourself with something besides the latte? Just curious.


----------



## Gwen1 (Sep 3, 2011)

Coldthyroid: This happened to me when I was alternating 112 mcg. and 118.5 mcg. Levoxyl. Would love to know why that happened. I did it for 8 weeks while waiting to get in to my new endo appt. She lowered me to the 112's. I was overmedicated on the 125's for one year. tsh .297 ft4 top of range.


----------



## coldthyroid (Mar 8, 2012)

All good questions. I've drank coffee all my life but do have an open mind that it very well could be coffee. As of tomorrow, I'll cut it out completely. Tough to do but think I can do it. I've been on levoxyl before was switched to Synthroid, brand name. The reason it was switched though wasn't because of these symptoms. It was switched because I had short cough, which turned out to be GERD. I could switch back I suppose. I would first like to rule it out that it is the synthroid. Hear me out on this one. Back in October 2010, was at Mayo for the GERD issue. Had whole work up actually, but at that time I didn't send my endo doc. Only my general consultative doc. At that time he said I WASN'T getting enough thyroid...so he bumps me up to .225. Had a required follow up visit in Jan 2011. When I left there on the .225, I felt normal. Remember, that was October. Around middle December, I started experiencing dizziness, not feeling good. On my return Jan 2011 trip, they did blood work and this time I did get into see endo. Told him I was dizzy, just not feeling weel. He said he could understand that by my bloodwork. According to him I was overmedicated. Hmmm....So, he dropped me back down the .175. I was fine until end of April I guess. Started having same feelings. Thats when I had to get to a doc and the only one available was urgent care. I was not feeling good....AT ALL. Told them about my thyroid issue (Hashi's) and to run blood work. Two days later the doc called and said way too much thyroid medicine. Start breaking .175 pills in half. So I did. Symptoms started to go away or at least they weren't as bad. Thats how I got to the .88. Got back out to Mayo in July 2011 for yet one more follow up. Told them my symtoms....dizzy, lots of sinus pressure, ill feeling, nausua, blurry eyes. Told them about the Urgent Care visit and that they told me break pills in half. Told them I was losing weight....and then gaining it back. I would lose 6-8 pounds within 10 days and then gain it back slowly. They were careful to ask if I would gain the weight back. I was. They never said "you need your blood checked", continue to monitor, stick with the .88 if it is working. Now how the hell do I know it's working if they don't pull blood? Over time after that visit, it did seem to taper away to almost nothing. Then beginning middle of October, it started up again and never went away. Seems when I take even a bit more than the .88, I feel very ill. I've only got to wonder.....am I still over medicated? Should I just take a .88 every other day?


----------



## lainey (Aug 26, 2010)

Have they ever revisited the GERD issue as a possible source of your symptoms?

Has anyone suggested any other investigations for the neurological symptoms?

Not to say that it isn't because of your thyroid.
The only way to really tell your thyroid status is with lab work.

Unfortunately the only way to find out if it is because your numbers should be lower is to try to find a workaround to what seems to be a problem with the medication itself. This means taking it at a different time, changing brands or some combination of the above.

If you back off further, your levels will continue to rise, which would be counter productive. How about if you experiment with just the 88mcg and see if changing the dosing schedule, or perhaps taking it with a simple carb such as plain crackers or toast (yes, it says empty stomach, but if you take it regularly with a meal ultimately the needed dose increase will be titrated in).

Just trying to come up with some ideas....


----------

