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Old 03-06-2011, 07:58 AM   #1
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I was fine BEFORE meds!

Hello all. Seeing new doc after almost one year on Synthroid for Hashi's. I was dx'd when I went for a check up for some swollen lymph nodes on the side of my neck. I still have the swollen nodes which each doc has deemed "reactive" and nothing to worry about. (?) I felt GREAT at that time and began a downward spiral once I started meds for the Hashimoto's. Some days I want to stop taking it as I am always imbalanced, puffy faced, cold, parched skin and all the rest. My numbers are in range now so while the Synthroid is achieving its therapeutic effect - I am convinced IT is making me sick! Was anyone out there feeling healthy before their diagnosis? I'm at 50mcg and will be asking all these questions AGAIN on Wednesday. Just hoping for some opinions from you. Honestly, I am at the end of my rope and want my old life back. Thanks everyone.

 
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Old 03-06-2011, 08:09 AM   #2
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Re: I was fine BEFORE meds!

It sounds like you were lucky enough to be diagnosed before symptoms became obvious.

50mcg is a very small dose and I am very surprised you aren't taking a larger dose. Just because your levels are in the normal range does not mean they are YOUR normal.

Most people feel/function best with FreeT4 and FreeT3 levels towards the higher end of the range. If either/both of your levels are below mid-range, that is very well the cause of your hypo symptoms.

Please do not stop taking your meds - it is very clear to me via your symptoms that your body is trying to tell you it needs more thyroid hormone, certainly not less/none.

It doesn't sound like your doctor is aware of the fact that your dose needs to be titrated up so you are without symptoms (and your levels most likely towards the high end of the range).

I suggest you read "What Your Doctor May Not Tell You About Hypothyroidism" by endo Dr. Ken Blanchard. He explains much of what I've already told you and then some.
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Old 03-06-2011, 12:19 PM   #3
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Re: I was fine BEFORE meds!

Thanks, cd37. I'll have my latest labs when I see the new doc (#8!) this week. Fingers crossed. She's also looking at my B12 and D. I had her run another ANA and thyroid panel. Another question...given the long half-life of Synthroid, if she does increase my dosage, roughly how long will it take to "kick in"? Naturally, at this point I want INSTANT improvement, but I have learned not to expect much with this crazy disease. Thanks.

 
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Old 03-06-2011, 05:39 PM   #4
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Re: I was fine BEFORE meds!

Sheesh - #8? That's horrible.....I thought I had bad luck with thyroid doctors (I'm on #5). Kudos to you for not giving up.

The amount of time it takes to see improvement varies with the individual. Some people feel an improvement within a week or two....it does take 4-6 wks. for each dose to accurately reflect in levels so, it's truly a patience game.

When a patient needs a dose increase, some doctors actually have the patient take an even higher dose for a week to help them feel better sooner and then back them down to the target dose.

For example, with you taking 50mcg right now, my doctor would have me take 75mcg for a week and then bring me back to 62.5mcg for the next 4 weeks and then lab.

I think dose adjustments should be aimed towards complete elimination of symptoms...this is achieved by getting your FT4/FT3 levels up to the "most commonly comfortable" places within the ranges of normal.

Unfortunately, with hypothyroidism, there's no "instant" feeling better - that's why it's good to get regular labs and push your doctor for dose increases until your levels get up to a more appropriate place.
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Old 03-07-2011, 01:13 PM   #5
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Re: I was fine BEFORE meds!

Frances Kate,

Are you me? I posted very similar experience a couple of days ago about still feeling hypo and cold but my labs now look no different than before! Like you, I am also on Synthroid 50 and while it felt like it was doing something, now it feels like I'm taking a placebo pill.

Waiting to hear back about your labs. Sorry you are feeling like this. This has to change for the better. I sometimes feel like going to an alternative practitioner to see if there is something else going on with me as docs are not helping much.

CD37 is right about possibly going to 75 then down to 62.5. I know for me, 75 is too strong after a couple of weeks.

 
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Old 03-07-2011, 04:00 PM   #6
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Re: I was fine BEFORE meds!

Library Girl, it's so much FUN, isn't it?! Happy to meet you. I will share my labs and new course of action on Wednesday. Unlike you, I never really felt well since starting the Synthroid. The puffiness, dry skin, fatigue, dizziness persists. I can honestly say I have had only 2 close to normal days in a year. I was encouraged by cd37's thoughts and I have already prepared by notes for the doc. I really was getting to the point of stopping completely just to see what happened. Foolish, I know - but I am fed up. I am interested to learn (if you are willing to share) about your other symptoms on 50 mcg and what kind of feedback you are getting. I understand that with Hashi's, there's a lot of fluctuation possible as the thyroid sputters into action occasionally and that I will likely have flares until it finally konks out. So, so frustrating. I appreciate the knowledge and support to be found on these boards. Hang in there! Until Wednesday...

 
Old 03-07-2011, 09:25 PM   #7
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Re: I was fine BEFORE meds!

Well I am dealing with this exact problem... I was not even symptomatic when I started taking natural thyroid 65mg, after almost 2 weeks, I lost all my energy. Which was frustrating because I had been feeling amazing. I read an article that initial dose should be increased in 2 weeks so I took it upon myself to increase to 130mg.... Felt better (slightly) for a week and once again at the 2 week mark crashed even harder. Energy is zapped, fingers and toes cold (all day) and slightly numb and I feel bloated and am having minor depression and anxiety. NONE of this was happening prior to taking the meds. As a matter of fact I felt better than I have in years prior to starting meds. Recently started a new diet (8 weeks ago) whole foods, 5 meals a day etc etc..... it has gone well and I have lost 10 lbs. I have not noticed any weight gain but I fear that might be next. I really just want to understand what is going on. My initial blood test TSH: 8.2, T3: 31.1, T4: 7.5 Based on this lab report my T3 and T4 are w/in range. Gyno tested me a week ago for anitbodies and that came back normal...... PLEASE HELP ME UNDERSTAND. I am due for next test in 3 weeks but I am on the verge of stopping the meds........

 
Old 03-08-2011, 12:13 AM   #8
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Re: I was fine BEFORE meds!

Frances Kate, I didn't feel THAT great on most days of Synthroid but I meant "good" in the sense that it was better than most crummy days. So "good" was just kind of relative. In actuality, there were SOME days that were decent in terms of symptoms not being there (puffiness, fogginess, irritability, depression, suicidal thoughts, hair loss, water retention, and did I mention PUFFINESS?) but I still felt like a slug most of the time.

Last week, I could not understand why Synthroid was not working for me since late last year. Kept waiting and waiting thinking that my body still needs time to adjust b/c I kept reading how many patients progressively got better as they stayed on their optimal dosage closer to their year long mark, etc. My symptoms as of late were freezing to the bone every minute of the day and I needed blankets, heater, and even though I would exercise and sweat my body would get cold as soon as the sweat wore off. Goosebumps was pretty much my skin coat. The worst was the puffiness. It was so ugly! Huge bags under and over my eyes. Cheeks so inflated that they looked like cotton underneath them. My mirror was showing a sick, tired, and fat person. I was so disgusted and worried about myself. Never in my life, did I ever think about my husband possibly wandering his eyes. But there I was, staring at my reflection thinking that my face was just never going to get back to normal. Going out for lunch or dinner with friends or just with my husband was dreadful. Not to be vain, but I felt like people were just noticing my husband and treating me like I was invisible (pre-hypo I used to be complimented on my looks a lot). I felt like the elephant man everytime I see the mirror and just want to cry b/c I knew this was not a slightly older face but a deformed face. It looked like I had taken steroids, like a moon face. You know what kills me? When I haven't seen someone in a year and they tell me, "OH, I didn't notice/recognize you, it's been a while" or "MY, you have CHANGED!" Don't know what that means but if it doesn't end with "You look good" or "You look great, what did you do?" then I know it means, "Wow, you look terrible".

Last week, I forgot to take a Synthroid pill. Do not know how I forgot but I did and usually I am a stickler and make sure I never miss. Guess what happened that day? I was not as puffy and I was SO articulate and I HAD ENERGY! What the what? It was like a curtain was lifted off my head. I did my taxes, cleaned half of the house, talked on the phone, laughed on the phone, didn't feel like I wanted to kill myself, and felt so optimistic about anything. The next day, I took my Synthroid and everything fell back into place again. I was so depressed this past Saturday b/c of my puffiness and lack of energy. Just trying to figure out what else could be wrong with me. Do I have Lymes? Some kind of virus? Cancer? Why did I not feel good or even normal? I remember I had shingles in 2006 and that's when this whole hypo started happening. Going into the file cabines, I pulled out my previous labs. Looked at last year's with no thyroid medication and last month's with Synthroid. Guess what? TSH about 7.? last year. TSH 1.6 this year but the FT3 and FT4 pretty much same but the FT3 was a tiny bit higher w/o Synthroid! No wonder, I was feeling and looking terrible. Synthroid did not work with my body. Now to figure out what else to do.

 
Old 03-08-2011, 05:10 AM   #9
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Re: I was fine BEFORE meds!

I think one of the key words being used here but, obviously to me, has not been attained is: optimal dosage.

50mcg is just not a regular dose - it is either a starting dose or the 2nd step (after 25mcg) in the titration.

Sometimes, after starting meds or even after a dose increase, the pituitary gland will recognize the influx of thyroid hormone and reduce the production of hormone - this is what causes the hypo symptoms to return.

Then IF the dose is right, the symptoms will ease and continue to ease. It should NOT take months upon months. If your FT4/FT3 labs have not risen towards the top end of the range after a particular dose, that is an indication that a dose increase is in order.

Some people have absorption issues for a variety of reasons - they are taking their meds with food/coffee/supplements (a no-no) or they have physiological reasons such as leaky guy or just a body that doesn't absorb well.

At the end of the day, everyone should titrate up on their dose with the goal of complete symptom elimination in mind AND those higher FT4/FT3 levels.

If one brand of levothyoxine (synthroid, for example) just doesn't seem to "cut it", the patient can always try another brand.....very important, though, to stick with the same brand 'cuz each manufacturer uses different fillers that can affect absorption.

FT4/FT3 levels that haven't moved when TSH went down is a big red flag that the dose isn't high enough. Most healthy people have TSH 1.0 or lower. And, truly, once a person is taking thyroid hormone replacement meds, there is an exogenous effect on the TSH and that is why TSH should be ignored for dosing purposes.

Hope this makes senses.
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Dx'd Graves' June 2007..used ATD's, achieved remission Nov '09....went hypo Mar '10

Last edited by cd37; 03-08-2011 at 05:12 AM. Reason: typos

 
Old 03-08-2011, 11:13 AM   #10
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Re: I was fine BEFORE meds!

Quote:
Originally Posted by SMJOINER View Post
Well I am dealing with this exact problem... I was not even symptomatic when I started taking natural thyroid 65mg, after almost 2 weeks, I lost all my energy. Which was frustrating because I had been feeling amazing. I read an article that initial dose should be increased in 2 weeks so I took it upon myself to increase to 130mg.... Felt better (slightly) for a week and once again at the 2 week mark crashed even harder. Energy is zapped, fingers and toes cold (all day) and slightly numb and I feel bloated and am having minor depression and anxiety. NONE of this was happening prior to taking the meds. As a matter of fact I felt better than I have in years prior to starting meds. Recently started a new diet (8 weeks ago) whole foods, 5 meals a day etc etc..... it has gone well and I have lost 10 lbs. I have not noticed any weight gain but I fear that might be next. I really just want to understand what is going on. My initial blood test TSH: 8.2, T3: 31.1, T4: 7.5 Based on this lab report my T3 and T4 are w/in range. Gyno tested me a week ago for anitbodies and that came back normal...... PLEASE HELP ME UNDERSTAND. I am due for next test in 3 weeks but I am on the verge of stopping the meds........
Hi there. While I don't have any experience with natural thryroid treatment, I can offer that I have learned that there is no quick fix. The challenge for me has been finding a doctor that will listen. I will post my latest results and findings tomorrow. In the meantime, educate yourself as much as possible. Glad you don't have Hashimoto's like me as that adds yet another element of complexity. At least you know that there are a couple of us who are struggling with the same concerns as you. Take care.

 
Old 03-08-2011, 11:21 AM   #11
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Re: I was fine BEFORE meds!

Quote:
Originally Posted by librarygirl2 View Post
Frances Kate, I didn't feel THAT great on most days of Synthroid but I meant "good" in the sense that it was better than most crummy days. So "good" was just kind of relative. In actuality, there were SOME days that were decent in terms of symptoms not being there (puffiness, fogginess, irritability, depression, suicidal thoughts, hair loss, water retention, and did I mention PUFFINESS?) but I still felt like a slug most of the time.

Last week, I could not understand why Synthroid was not working for me since late last year. Kept waiting and waiting thinking that my body still needs time to adjust b/c I kept reading how many patients progressively got better as they stayed on their optimal dosage closer to their year long mark, etc. My symptoms as of late were freezing to the bone every minute of the day and I needed blankets, heater, and even though I would exercise and sweat my body would get cold as soon as the sweat wore off. Goosebumps was pretty much my skin coat. The worst was the puffiness. It was so ugly! Huge bags under and over my eyes. Cheeks so inflated that they looked like cotton underneath them. My mirror was showing a sick, tired, and fat person. I was so disgusted and worried about myself. Never in my life, did I ever think about my husband possibly wandering his eyes. But there I was, staring at my reflection thinking that my face was just never going to get back to normal. Going out for lunch or dinner with friends or just with my husband was dreadful. Not to be vain, but I felt like people were just noticing my husband and treating me like I was invisible (pre-hypo I used to be complimented on my looks a lot). I felt like the elephant man everytime I see the mirror and just want to cry b/c I knew this was not a slightly older face but a deformed face. It looked like I had taken steroids, like a moon face. You know what kills me? When I haven't seen someone in a year and they tell me, "OH, I didn't notice/recognize you, it's been a while" or "MY, you have CHANGED!" Don't know what that means but if it doesn't end with "You look good" or "You look great, what did you do?" then I know it means, "Wow, you look terrible".

Last week, I forgot to take a Synthroid pill. Do not know how I forgot but I did and usually I am a stickler and make sure I never miss. Guess what happened that day? I was not as puffy and I was SO articulate and I HAD ENERGY! What the what? It was like a curtain was lifted off my head. I did my taxes, cleaned half of the house, talked on the phone, laughed on the phone, didn't feel like I wanted to kill myself, and felt so optimistic about anything. The next day, I took my Synthroid and everything fell back into place again. I was so depressed this past Saturday b/c of my puffiness and lack of energy. Just trying to figure out what else could be wrong with me. Do I have Lymes? Some kind of virus? Cancer? Why did I not feel good or even normal? I remember I had shingles in 2006 and that's when this whole hypo started happening. Going into the file cabines, I pulled out my previous labs. Looked at last year's with no thyroid medication and last month's with Synthroid. Guess what? TSH about 7.? last year. TSH 1.6 this year but the FT3 and FT4 pretty much same but the FT3 was a tiny bit higher w/o Synthroid! No wonder, I was feeling and looking terrible. Synthroid did not work with my body. Now to figure out what else to do.
Library Girl, we are identical in our maladies! I was invited out last week and told my friends that I may or may not be there - it depends on what my FACE looks like. I get giant chipmunk cheeks and swelling under each eyebrow. A colleague that I had not seen in a while asked me if I had gotten collagen injections! Gee, thanks. I am convinced there is a connection between our disease and the puffiness. There are too many of us with this complaint, yet the docs always seem surprised. Hmmmm. Your post provides me with some comfort that I am not alone and I most definitely am NOT crazy! I am hoping for a revelation tomorrow at the doc's, but I am not too hopeful. Stay tuned!

 
Old 03-08-2011, 12:03 PM   #12
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Re: I was fine BEFORE meds!

Google hypothyroid symptoms and check out some of the lists compiled from patients' experiences - you will note puffy face and eyelid swelling.

I have the pleasure of just one upper eyelid swelling when I'm hypo - talk about looking "unbalanced" - lol
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Old 03-08-2011, 01:34 PM   #13
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Re: I was fine BEFORE meds!

Quote:
Originally Posted by Frances Kate View Post
Hello all. Seeing new doc after almost one year on Synthroid for Hashi's. I was dx'd when I went for a check up for some swollen lymph nodes on the side of my neck. I still have the swollen nodes which each doc has deemed "reactive" and nothing to worry about. (?) I felt GREAT at that time and began a downward spiral once I started meds for the Hashimoto's. Some days I want to stop taking it as I am always imbalanced, puffy faced, cold, parched skin and all the rest. My numbers are in range now so while the Synthroid is achieving its therapeutic effect - I am convinced IT is making me sick! Was anyone out there feeling healthy before their diagnosis? I'm at 50mcg and will be asking all these questions AGAIN on Wednesday. Just hoping for some opinions from you. Honestly, I am at the end of my rope and want my old life back. Thanks everyone.
I am having exactly the same problem. I am hypersensitive to medications and Synthroid feels like poison. I feel tired without it but the side affects I have when I'm on it are much worse...swollen face, tinnitus, dry old-looking skin, dehydration, headache, dizziness and confusion. I'm starting to think I'm not able to take this medication and will never adjust. If anyone has had these side affects and has adjusted after time, please let us know.

 
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Old 03-08-2011, 01:39 PM   #14
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Re: I was fine BEFORE meds!

Quote:
Originally Posted by avictorino View Post
I am having exactly the same problem. I am hypersensitive to medications and Synthroid feels like poison. I feel tired without it but the side affects I have when I'm on it are much worse...swollen face, tinnitus, dry old-looking skin, dehydration, headache, dizziness and confusion. I'm starting to think I'm not able to take this medication and will never adjust. If anyone has had these side affects and has adjusted after time, please let us know.
..swollen face, tinnitus, dry old-looking skin, dehydration, headache, dizziness and confusion. These are not side effects - they are hypo symptoms and a sign that your dose/thyroid hormone levels have not been optimized.

I suggest you Google those hypothyroid symptoms lists I mentioned in my earlier post and read those compiled by patients - you will find your symptoms on the lists.

Some people need to take a T3 med, such as Cytomel in addition to their synthroid/levothyroxine (T4 med)

Hopefully, your doctor is not looking at your TSH level which is a pituitary hormone.

Instead, your doctor should be looking at your actual thyroid hormone levels - the FreeT4 and FreeT3.

If either level is below mid-range, that's a sign you need a dose adjustment.

Feel free to post your labs and we'll help you interpret them.

PS Synthroid isn't a "med" per se like Lipitor or Advil. Synthroid replaces a vital thyroid hormone that is needed by every bodily system to function properly. Again, since you are having symptoms (not side effects), this is a big red flag that your dose isn't optimal (or you need a T3 med as well)
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Last edited by cd37; 03-08-2011 at 01:41 PM. Reason: added PS

 
Old 03-08-2011, 04:50 PM   #15
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Re: I was fine BEFORE meds!

cd37, you are always the voice of reason and I take encouragement from your kind replies. Thank you. It's reassuring, too, just knowing I am not alone with these symptoms. Fingers crossed that tomorrow's doc visit will be meaningful and NOT another exercise in frustration! I am prepared and armed with knowledge.

 
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