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Old 04-15-2009, 08:01 AM   #1
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New here and feel terrible on thyroid meds

I started reading other threads..and found a lot have these symptoms early on. But I have been on meds for over 6 months and am just having these symptoms..


I got diagnosed with hypo months ago. They started me out with Levothyroxin 50mcg. The only reason hypo got caught was because of my horribly heavy periods. I went to a gynie and she decided to test me. She was the one who told me that I was hypo and to go see my reg. doc. I was also very tired and sluggish all the time but I thought it was just life. I never have had high bp and my cholesterol is perfect.

I did ..and they checked my levels<I don't have the levels> but started me on the medicine. Nothing happened for a bit. Then I started noticing that I had a ton more energy. I was very happy! I went on vacation and forgot my pills there ..so I went a couple days without and the crash I had..Whew! I got back on my pills and took another month of 50 and then did my bloodwork. I got pushed up to 75mcg. I felt great. I was excited that I felt so great.

I had noticed though that I started having palpitations or heart racing..don't know which one a couple evenings after getting upped with my meds. Now I also started my period around then too..so I don't know if that has any correlation. It only lasted about 10 minutes for a couple of nights and then I was fine.

I did my bloodwork and got upped to 100mcg..and then I started feeling like crap again. I started getting that racing heartbeat when I wasn't doing anything..it got real bad and I panicked. I went to the hospital and they checked out my heart. Ekg fine. Dr. had me have an ultrasound and have a holter monitor. The ultrasound was fine and the holter showed my heart racing...but not when I said I felt symptoms..Weird. So I started to wonder if it was anxiety..which is new for me. My bp was up a little..I told dr. probably because of this anxiety issue. He put me on atenolol. He told me it helps with the racing. It slows the heart rate down. It also makes you tired.

So i was upped to 112 mcg..and that just put me over the edge. I went back and told him this heart thing was driving me crazy. He tested my blood and everything was normal now. So he moved me down to 100mcg. I still feel terrible. I felt better with an underactive thyroid. I am about to go back and tell him we need to do something because I can't live like this. I asked about switching meds..but he told me it is a natural part of the body and they are all the same. But I didn't feel this way until I started the medicine. Also, I started having pain on the top of my feet????

Sorry so long.. I am just at my wit's end. It isn't like I just started this medicine either..I have been on it for at least 6 months.. Could it be the medicine? Does anyone else have this?



Thanks so much..I can't get any answers and would love your input.

Last edited by Jenne; 04-15-2009 at 08:55 AM. Reason: forgot to add something

 
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Old 04-15-2009, 08:53 AM   #2
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Re: New here and feel terrible on thyroid meds

You don't have to live this way, and you don't have to remain hypothyroid, either. You need to make your MD aware that there are other options, though. And if he refuses to try any of them, you probably need to change MDs.

All of the synthetic T4 drugs (levothyroxine and the brand names) basically are "all the same", in that the active ingredient is a lab-created version of the T4 hormone your gland would make if it could. But there can be real differences in the way any one of those versions works within your particular body. Maybe Synthroid or another of the brands would work better for you than generic levoT. Three major endocrine organizations issued a statement a couple of years ago addressing these differences.

So... Your first step should be to get copies of all your lab work, so that you can compare where your levels are/were in comparison to the way you feel/felt at the moment you were taking a specific dose. It could well be that your MD is wanting you to take more hormone than your body actually needs. He may think that results just any old place within the lab range are ok, but they may not be ok for you. The higher dose may be putting your T4/T3 into a higher part of the normal range which is actually making you a bit hyper. Going back to the dose where you felt best would be one option you can try.

Another option is to change to a brand name of levoT. In the US, the brand names are Synthroid, Levoxyl, Levothroid, and Unithroid. Any one of those could be better (or worse) than the levoT; you can't know until you give them a fair trial.

The third option - which will very likely be adamantly opposed by your MD - is a natural dessicated thyroid drug. Armour Thyroid is the best known one; Westhroid and Naturethroid are others. I myself couldn't take Synthroid in even the smallest dose without it overmedicating me, making me hyperT. Once I switched to Armour, I never had that problem again. I've been successfully taking it for about 6 years. Because the majority of MDs is so violently anti-Armour, you may be told that it will make your heart palpitations worse; but that is not necessarily the case. Again, you just would have to try it to know for sure if it will work better than the levoT.

I hope these suggestions give you something more concrete to go on. Good luck in getting the right med/dose for your body.

 
Old 04-15-2009, 09:10 AM   #3
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Re: New here and feel terrible on thyroid meds

Thanks for your response!!!


Yea he already mentioned to me that Armour would make the heart thing worse. My Mom has hypo and doesn't have any of these problems. She is taking synthroid. I tried to have him put me down to 75mcg..because I believe that is where I felt the best. But he agreed to move me down to 100mcg...which is where I am at now..but it isn't helping. I just feel like I am going backwards.



I have also started having pain on top of my feet..my left in particular..I don't know if it might be joint pain. My periods have completely gone off the deep end. When I went up to 112mcg. I had my period on the 5th of Feb..and then I had it again on the 20th with big clots<not to be graphic>. It ended March 4th. i didn't write down when I had it again because I forgot..but I put that my period ended on March 30th. So I had it sometime between there. I am crampy again.

Also, I have started having heartburn and pain in my back and right upper quadrant. I have been nauseous . I event took a pregnancy test to make sure nothing was wrong. I had my gall bladder taken out over 7 years ago due to sphincter thing not working correctly . They took it out because it helps correct the problem, plus it wasn't working at 100%. I have been ok since..just phantom pain there sometimes. When I had it done, they said if it didn't work, they could put a stent in to open the hole more..but was advised against this ..Anyhow now I am having all sorts of gastro issues..and don't know if that is related.

 
Old 04-16-2009, 12:21 PM   #4
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Smile Re: New here and feel terrible on thyroid meds

Hi Jenne
Your story just seems so similar to mine at the moment-I can really sympathise with what you're going through!! I'll explain whats going on with me and where I'm at at the mo. I'd love to hear how you get on as i'm kind of in limbo at the mo

I went hypo last summer after having a sub total thyroidectomy. I was told that if I went hypo after surgery it would be so much easier to control than than the 7yrs plus of being on treatment for being hyper but I've just about given up on the sytem and feel really let down! I was started on 50mcg last Aug when I felt the most energetic and happiest I'd felt in 8yrs!!(the endo was obviously going by my test results at that time which showed TSH-5.91 and Free T4-11) That was ok and I didn't really notice feeling much different once starting meds although when I look back I've never been as happy and energetic as the first few months after my op-then after 2 weeks I was upped to 100mcg and although I don't remember suddely feeling ill I was definantely more tired although it never dawned on me this was becasue of my thyroid (just thought I was a bit run dwn looking after 2 young boys!) It wasn't until March this year when I saw the endo (I said I was ok-just tired running after 2 boys) and she discharged me upping my levo by 50% to 150mcg that I started to feel really unwell!! A week after I noticed I had severe pmt symptoms-sore breasts/dizziness/racing heart walking upstairs/severe tiredness and not being able to control my emotions-my period started 3 days early, lasted 2 days yet even after a month the only symptom that had disappeared was sore breasts. This month my period started after 31 days ( 3 days late) I went back to GP mid March who had bloods done and found they were 'normal' so I went back to gp last Mon who repeated bloods and rang my endo consultant. I was fobbed off with the endo being more than happy with thyroid results but has doubled my calcium suplemnet intake (I know for a fact a lack of calcium doesn't cause all these probs!) I've been told to get bloods repeated in a month!!!!!!!

Anyway I decided after waiting another week and still feeling as rubbish I went to see gp again-I literally burst into tears almost as soon as I walked through the door (something I seem to do all the time at the mo!!) I said to him I wasn't feeling any better and that my menstrual cycle was still playing up which prob didn't help the bursting into tears

He looked at me and said ''so why are you worried that your periods are late, is that not a good thing!!!!!'' I said it would be if it wasn't for everything else I'm experiencing! (I thought he might put 2 and 2 together and realise that it could all be connected!! I also said that I'd obtained a copy of all my results just to try and figure out whats going on myself to see if I could match up way I was feeling to test results and also after having thyroid probs for so long wanted to start looking into it myself educate myself better.

When he looked at results he wasn't able to help at all-he asked what I thought was the problem!!!! I said I didn't know I just want to feel good again instead of feeling so crap!! He asked what I had found out on internet. I said I'd never had my T3 checked and I know some patients do better on a combination of T4 and T3 (with which he replied but T4 gets converted to T3) so I said yes but some people aren't able to do that naturally and some people also do better on armour although I obviously can't say if any of this would help me, I'm just trying to find stuff out! (I didn't mention they've never checked my sex hormones or B12 etc as I'm not really up to exactly what it is they'd be testing for) He looked totally oblivious to what I was on about!!

THEN-the next thing he said just made me nearly explode!! He said '' I can put you on anti depressents if youd like!!!!!!!!!!!'' I just said straight away that I'm not depressed and that yes I'm upset and feeling down becasue I'm feeling so rubbish, not feeling rubbish because I'm depressed!!!!! I could tell he didnt believe me because then he asked what else is going on in my life!

I did say that I was looking into going private and explained why and he said 'well I hope it won't come to that, I'd like to think we can sort you out-would you like to get refered back to endo!?'' At time I was so upset I said yes and we left it at that because he said he was at a loss as to how else to help!!

Anyway I've come away and decided that instead of goin down that route again I am going private to a physician who treats patients with 'normal' lab results but still display hypo symptoms!

Sorry its such a long post but just to say you're definately not alone!
Keep smiling
Jo

 
Old 04-16-2009, 02:25 PM   #5
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Re: New here and feel terrible on thyroid meds

Hi Jo636

I think the best thing you should do is go and get bloodwork and saliva testing to make sure your hormones are balanced. I really think you should go to a specialized doctor, dealing with hormones. I know my mom goes to a doctor down here that is located in palm beach and raves about it, even I can tell how much better she feels.

Last edited by Administrator; 04-16-2009 at 04:06 PM. Reason: disallowed website

 
Old 04-16-2009, 03:13 PM   #6
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Re: New here and feel terrible on thyroid meds




Hi Jo636 ~
Went through samething with heart quite a few yrs. ago.. Results were same with Monitor ~ I was put on beta blocker for awhile which I stopped 2yrs. later. All was going o.k. to fare. then I had to stop vit B complex... is this a possiblity for you..?

Best Regards: DRAIN BAMAGED

 
Old 04-20-2009, 07:15 PM   #7
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Re: New here and feel terrible on thyroid meds

Jenne,

You might consider trying some L-carnitine. It's an amino acid that helps w/heart function, palps, etc. It also slows down the effect of the T meds on your heart.

You might also look into adrenal fatigue issues. When cortisol dips too low at any time, the T hormones can wreak havoc w/the heart. IME even a tiny dose (1.25 mg) of oral hydrocortisone taken sublingually (under the tongue) can HALT palps very quickly & restore a sense of well-being.

Best wishes.

 
Old 04-20-2009, 11:10 PM   #8
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Re: New here and feel terrible on thyroid meds

A year ago my Pharmacy took it upon themselves to switch me from Synthroid to the generic. WRONG, I started with all my hypo symptoms. I told my N.P. they did this & she said she couldn't take generic. They switched me back & I am fine now.

Jill

 
Old 05-17-2010, 12:20 PM   #9
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Re: New here and feel terrible on thyroid meds

Sorry if I'm repeating what someone else may have already said, but I didn't take the time to read the lengthy posts (no offense posters, just short on time). The pain in the feet or joints could be a Vitamin D defeciency. Try taking a supplement. Hypos are more apt to be low. Also like the poster above me said, some people need the name brand, not the generic. They are NOT all the same. Good luck!

 
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