Hypothyroid -- what do you take for it?

[MushyMushy]

I've been hypothyroid since 2001 and have been on name brand Synthroid all these years. I don't think I've ever been really stable. I take 150 mcg one day, then 200 mcg the next. 175 and 200 send me hyper, and 150 isn't quite enough.

Anyway, I just got my latest TSH results back and they were 33.9. Um, no wonder I'm feeling like crap! (for those who don't know, a normal range is 0.5 to 5.0... anytime I go over about 4, I feel lousy.)

I'm considering asking my doctor for a change in meds, like maybe to Armour thyroid. Do any of you take that? If not, what do you take? Have you had any problems getting it from the pharmacy? I've heard that Armour can be difficult to get. How do you feel on what you take?

 

[Christine]

Interesting.

It seems you are having an availability/absorption issue with the meds and a big one.

Do you take your meds in the morning and spaced apart from all food and other medications?

If so, then you are definitely on the wrong dose because 33.9 is pretty high for just having a weird blip in the meds.

I have no thyroid and I take .137 for 5 days of the week and then half of a tab of .137 for one day a week, and nothing on Sunday. This keeps my TSH at about 0.2. If I take .137 everyday it's awful and I too hyper. If I take .125 all week, my TSH goes to about 7.0.

I took Synthroid for about 13 years but became mildly allergic to one of the fillers in it (povidone) so now I take Levoxyl. I never had any changes in TSH levels when I switched meds.

 

[MushyMushy]

Christine, I should have mentioned -- I do take the pill first thing in the morning and don't eat or take anything else for at least an hour. I have done that all along. I was a big follower of Mary Shomon's advice.

 

[Tazicket]

Yikes! That TSH is crazy high! I've been on Levothyroxin ever since I was diagnosed 4 years ago. We had to tweak the dosage quite a bit during the first year or two, but things finally evened out for me at 100mcg and I've been there for a couple of years now. I hope they get you sorted out soon!

 

[Christine]

Christine, I should have mentioned -- I do take the pill first thing in the morning and don't eat or take anything else for at least an hour. I have done that all along. I was a big follower of Mary Shomon's advice.

This is unusual.

While I know that some people never feel "right" on Synthroid and often try the T3/T4 combinations, absorbing the synthetic T4 meds is never the issue with that. People who choose to move to Armour do so because, while their TSH might be controlled, they still don't feel right.

Your problem seems to be related to absorption and the meds, which historically worked for you, are not getting into your system now.

What any doctor would look at, at this point, is how you are taking them (and it sounds like you are doing the right thing).

What other meds do you take during the day that could interfere (birth control pills really threw my TSH off, so much so that I had to stop taking them).

Could you have gotten a faulty batch of pills (exposed to heat or something).

 

[dissybroad]

Are you working with an endocrinologist or your primary care physician? Maybe you need the specialist if you're that wonky. Just be sure to get the referral if your insurance requires it.

 

[Bilberry]

I do not take thyroid medications, but have seen this doctor discuss Armour and how much better it has worked for his patients and for himself also.

He also has patients take a modest amount of iodine and has seen improvement in thyroid performance in many.

http://www.heartscanblog.org/

 

[nmmom95]

Wow! That is a crazy high number! I take 100 mcg of Synthroid. I tried Levothyroxin for about 9 months, but needed the brand medication. I have that problem with several meds. Since you are already on the name brand, I hope your endo can help you find something that works for you. I don't have any great words of wisdom, just since I know how crappy you can feel when your thyroid is off.

 

[MushyMushy]

I've been working with my family doctor, so yeah, maybe it's time to see an endocrinologist. Boy I hate messing with specialists, but I can't function like this.

Bilberry, thanks for that link, it looks like interesting reading on several topics. He brought up a point about body temperature and hypothyroidism that I want to explore.

 

[JessicaR]

I also think its time for an endo consult. Its a good idea to get a full thyroid panel and not just dosing based on TSH alone. Ask about Cytomel ( liothyronine) it is t3 some people have a problem converting t4 to t3 - like me. Armour is another option. There are those that are very sensative to t3 and cant take it at all. It is so frustrating trying to find that even balance. I am forever changing. A few months ago I became hypo severely no rhyme or reason. I also have no thyroid. I go for blood-work every 3 months now to try and stay on top of it. Some days I'm up and others I'm down and always I'm feeling like crap lately. Weight loss and gain can change things quickly too.

Hope you get it figured out!

 

[Snoozan]

No thyroid here either due to thyroid cancer. I've been one of the lucky ones (knock on wood)whose TSH has stayed fairly stable ever since I had my thryoid removed. I take Levothroid, although I have never heard of anyone else taking this brand name, but it seems to work very well for me. I have to stay super-suppressed(my TSH is like .01) due to a miniscule amount of thyroid that the radioactive iodine just wouldn't kill off, but I take only 100mcg daily, except for 1 day a month I take 2 pills. I highly recommend to the OP to make an appointment with an endocrinologist who treats alot of thyroid patients.

 

[golfgal]

I take a generic synthroid and my numbers have been pretty stable since they found the right dose (about 15 years now). My TSH was 95 when they discovered I was hypothyroid. I take .125 daily and that keeps me where I need to be. BTW, "normal" is now .3-3, another reason to see a specialist, they are more up on the changes with their specialties.

 

[Christine]

No thyroid here either due to thyroid cancer. I've been one of the lucky ones (knock on wood)whose TSH has stayed fairly stable ever since I had my thryoid removed. I take Levothroid, although I have never heard of anyone else taking this brand name, but it seems to work very well for me. I have to stay super-suppressed(my TSH is like .01) due to a miniscule amount of thyroid that the radioactive iodine just wouldn't kill off, but I take only 100mcg daily, except for 1 day a month I take 2 pills. I highly recommend to the OP to make an appointment with an endocrinologist who treats alot of thyroid patients.

I took Levothroid for years. Then they pulled it off the market for awhile for some reason, so I switched to Synthroid. Then I had the filler problem and am now on Levoxyl. But Levothroid did very well for me and was cheaper than Synthroid.

 

[FlyingDumbo]

Wow mine was 20.53 and I thought that was bad. Based on how I felt at 20 you must be feeling awful!!!! I take liothyronine AND levothyroxine, but it still isnt enough. I get tested every 2 months and every 2 months we up my doses. I have new insurance kicking in end of April, at which point I want to see an Endocrinologist.

 

[4greatboys]

I couldn't take the Synthroid. It made me so hot, and I was on a very low dose. I haven't been taking anything but need to go back to my Endo and try something else.

 

[crz4mm2]

I am on Synthroid. I tried levothyroxine (generic) and could not keep my tsh normal.... So went back to Synthroid. Been on it for YEARS (since about 97).

 

[Wishing on a star]

Mushy, if that number you gave for your TSH is correct... Get thee to a good endocrinologist.

And, be aware that good ones can be hard to find. If I am correct, there is a big shortage of these specialist... and folks are simply being advised to see their General Physician... who often just runs a TSH...

You need a full thyroid panel, and probably other tests as well.

My endocrinologist retired... And it was a hassle to drive a full hour back to where I used to live to see her... I went to like the ONLY endocrinologist here, who was supposed to be pretty good.... He only ran a TSH.

Anyhow, it sounds like something is going on.
I would find a specialist ASAP.

 

[Debbie7452]

Wow, someone beat my TSH when I was diagnosed. Mine was 60 and my OB/Gyn called me at night to give me the results. She sounded VERY concerned so I figured it was kind of bad. I had thought I was tired because I might be PG! Sorry you are having trouble. My levels have been really stable since I went back to levoxyl/thyronine, even though I am the worst at remembering to take my pills. Apparently, I forget just the right amount of the time to have the "perfect" test results according to Endocrin. doc. He is planning to retire soon. I had switched from armour which wasn't working for me anymore.

 

[MushyMushy]

90s is outrageously high. I don't know how you could function on it. When I was first diagnosed back in 2001, mine was in the high 60s. I was sleeping anywhere from 15-20 hours a day and my cognitive function was horrible. I had all the typical symptoms, but it took so long for anyone to catch them. This time around, I have absolutely no energy and want to sleep all the time, plus I'm forgetting words. That should have clued me in right there! But I had none of the other symptoms like hair loss or dry skin.

Anyway, I was talking to one of my best friends about it today and joked with her that I was too tired to try to find myself a specialist. She said that she is going to do the research for me and find me one that I can go to! Isn't that the sweetest thing?? I feel so fortunate to have good friends like that.

 

[mt2]

I take Armor (60mg). I've been on it for 2 1/2 yrs now. My life is sssooo much better than before. I haven't had a difficult time getting it filled. It costs me $9.95 a month. The insurance gives me a harder time because they say I should have a generic. This is the best stuff for me. My best friend takes the one that starts with 'L'. She has weird doses every other day too. She has to get checked 3 -4 times a year while I get checked every Aug. I've never had any issued while my friends that take any syntheics have had minor issues. I don't know why.

I forgot to say that I see my family Dr. He prefers more natural medicines if possible. He also listens and wants to find out what is causeing the problem not just throw a pill at me. I left my old Dr because he refused to listen when I told him "I'm just not right." He said it was all in my head, I should go to weight watchers, and see a pshycologist (sp). I was on 11 differnt meds with him. I'm now on only 3 with my new Dr. Most of the time I don't even need meds during allergy season anymore. I love my Dr.