A year later -what would you suggest at this point?

[NightOwlz]

Hello, and Happy New Year. I joined a year ago after an awful experience switching from synthetic t4 to armour. I felt amazing inittially but crashed hard after 6 weeks or so. Most here agreed that I was given too much too soon, but I was unable to find a doc who would work with me to try it again, but instead I sought the help of one of the top thyroid docs in the area whose practice focuses exclusively on the treatment of hypothyroidism. He is an MD. He only tests for tsh and free t4 and Vit. D, and prescribes a regimen of synthetic t4 plus compounded natural dessicated thyroid. He doses according to to labs and one's symptoms, is terrific about returning calls and answering questions, and is dedicated to finding the right mix of meds for each patient. He has written a few books on the treatment of hypothyroidism, and has enjoyed great success with this regimen of synthetic t4 plus the compounded ndt. He is very knowledgeable about the connection between hypothyroidism and heart issues, sleep problems, depression, fertility, d3, etc.

However, after following this protocol for close to a year now, I don't think that it is right for me. I have seen some great improvements, but it's almost as if I've merely traded some symptoms for others. For example, my skin on my face is clearer, but I have gotten only a handful of good, restful nights' sleep in a year - I fell asleep at around 9 and woke up at 1 and will likely be up for good again as I was last night. I have an overall sense of illness that is concentrated in my chest/lungs, such that I always feel as if I am just getting over a chest cold, and I'm unable to blow out candles, if that makes any sense. My head feels like a balloon, my jaw is clenched at night, I have intermittent constipation, a constant ringing in my ears, my heels and knees are dry and cracked, and I look just awful. But, my brain fog has lifted, I can see much better at night, m palms are not orange anymore, I am much calmer and less irritable overall (in spite of a lack of sleep) but almost to the point of a flat, or numb sensation regarding emotions (again  if that makes any sense). Essentially, while I can function now better than I did a year ago, I feel as if I haven't made any real progress and am not confident or hopeful that I can go on like this for much longer.  I have had some very brief periods of feeling great, but they lasted only a few days, and the insomnia/chest tightness-pain/racing heart/headaches/constipation/paper back pain-soreness always return. Right now I am hoping that each new day will bring me the long-lasting relief that I am so desperately seeking.

I asked the doc if he would be open to switching me to 100% ndt,  and he said he would but only after giving his protocol a chance, because, in his experience, most people do best with a regimen like his, where the percentage of t4 is greater than the 80/20 ratio found in ndt.

My questions to you all are 1) how long does it usually take to determine whether a certain med/protocol is right for you? 2) am I crazy for wanting to give 100% ndt another try? 3) what would you do in my situation?

Thank you all gain or you help.

[NightOwlz]

Thank you so much for your thoughts.

I'm trying to be patient in this process and am having difficulty knowing when to say when regarding a protocol, but I have identified a few potential other docs in my area and will give them a call.

And, if anyone can recommend a great doc in the greater Boston area, please pm me, and I'd be so grateful for your help.

I will give an "ate" magnesium another try. I'm still nursing my dd at night so the adaptogens will have to wait just a bit longer. I'm very eager to give them a try.

Thank you all again. Have a happy, healthy, peaceful and joyful 2014.

[LazyMoose]

If a Dr Rx's Naturethroid, I'm sure they are open to other brands. What it means is they are most likely open minded.

I have met some lousy thyroid Doctors that were listed as the best. I knew more thyroid health than a couple of them did, scary! Its other Doctors and clinics that make up this voting, so medical politics makes up for a lot of who is the best Doctor ect. in magazines and local media. Sometimes they make there way onto the about thyroid site too, how I really wonder.

Adding to what others mentioned:

Finding a thyroid med that works best for you and adjusting to it can take time, for some longer than others.  For some it can several years, with a big change in the first 3 to 6 months and then there might be a healing time since the body is finally getting something it can use - maybe another year. It depends on how long your body was messed up.

The big picture:

The goal is to reach optimal thyroid health with hormone while being open to other supplements your body might need - and we are all different there. There is a great deal of health info many regular MD's just do not know, but they are getting better I think. They are schooled to treat the body mostly with drugs. Thyroid 'drugs' are actually replacement hormone though, so were not really on some band-aid drug therapy like with some other health issues. Learning and trying vitamins and supliments known to help thyroid sufferers take time too. Not all need them, so do your research and dont try them all at once. A note on Magnesium- read the tiny print, the only magnesium that is absorbed ends in "ate" there are around five of these formulations. Mag Oxide does nothing.

If your thyroid has been toast for a while and you feel tired but wired at the same time even after achieving optimal thyroid health, then its time to look at other causes the first is adrenal health which can be treated with herbs possessing "adaptogenic" properties. 6 very popular adaptogens from the many are used  for adrenal stress.
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[NightOwlz]

Exactly.

So, should I find a new doc? This one was listed on a few top doc sites, including about.com and thyroid change.org. Is it common for docs to have several different protocols, or do they just know what they know, and do what they do?

I can ask him to work with me to try 100% ndt, but I 'll still be facing the same issue re lab tests..

I'm tempted to try a doc via the naturethroid site, but fear that they might prescribe that and nothing else.

Thoughts?

Thank you again.

[Barb135]

It's very possible that you started at too high a dose and/or went up to quickly.  Many people who take Tirosint have to start much lower and work up slowly.

"I would also like to know my free t3 if for no other reason than to know that I feel good when it is X, but not good when it is Y, whatever those values happen to be."  That's part of my point; testing lets you know what numbers to target.  It also helps determine proper dosage changes, by letting you know whether or not you need increased T3 med or increased T4.  

[NightOwlz]

I started at 75 mcg of Tirosint and got up to 112, but I was having terrible headaches, constantly had a runny nose, numbness in my hand and swelling of a foot and of my face, so we switched to the generic 50 and I take what amounts to 114 mcg a day. The terrible headaches stopped, but the low-grade one has returned, mostly at night but often throughout the day. The numbness in my hand seems to have stopped, but my face still looks "swollen," but less so, and Istill have the issues with sleep, dry skin, chest, et., etc. I do not know why Tirosint didn't work for me.

The doc has been addressing my symptoms by having me slowly increase the ndt and see how I feel. I would also like to know my free t3 if for no other reason than to know that I feel good when it is X, but not good when it is Y, whatever those values happen to be.

[Barb135]

There are some "rules of thumb" regarding the FT3 and FT4 that are good starting points, then meds can be tweaked from there to suit the individual.  Rule of thumb is to have FT4 at approximately mid range and FT3 in the upper half to upper third of its range.  FT3 should be higher in its range than FT4 in its.

Blood draws for tests of Free T3 should be done prior to taking a T3 med for that day, as noted by bedheadblonde, or you'll get false high results.

I'm just really uncomfortable with the lack of labs to help guide treatment.  AND if your doctor is treating you by symptoms, why hasn't he addressed the remaining symptoms you have?

Synthroid's 50 mcg tablet is white, with  no dyes, as is the 50 mcg tablet of generic levo.  All pill type meds will have fillers/binders, because that's what keeps them together.

What dose of Tirosint were you on and why didn't you respond well to it?

[bedheadblonde]

"I asked about testing for free t3, but he said that because the level of free t3 varies so much at any given time, the test isn't helpful."

TSH can also vary at any time of day-you can fluctuate as much as 75% in a day (I believe around that much, anyways.) so that's why a TSH test alone usually isn't helpful. FT3 *is* useful to see how much T3 is in your body and what you're running on-usually best to get it done before you take any meds with T3 in them to get an accurate picture. I also didn't do well on Tirosint, but I believe it's because I was matched dose for dose from levo, and often people on Tirosint need to start lower since there's no fillers in it-however, the way I felt on it, I'm hesitant to bring up trying it again on a lower dose just because of the extreme stomach cramping I had. Could be some of us also need some sort of filler to digest it well, and finding out what our bodies can handle filler-wise can be trial and error.

I also have the weird chest issues with hypothyroidism. Sometimes it feels as though I have a chest cold lingering, like I can't catch my breath, but my lungs are clear.

Though I'm glad your doctor is going by symptoms, it does sound like you may need your T3 raised-whether by ndt or adding Cytomel.

[NightOwlz]

Thank you so much again. The ndt I believe has the same amount of t4 and t3 as armour.

I asked about testing for free t3, but he said that because the level of free t3 varies so much at any given time, the test isn't helpful.

This contradicts many things that I have read, but again he isn't only going by labs. I do feel sometimes as if we are feeling our way in the dark and would be better able to get a more complete pictur with more tests.

I was told that a 50 mcg dose of levo from a particular mfg has no dyes or some other additive. I didn't respond we'll to the Tirosint -- go figure. That's about as vanilla as it gets for t4 - which is also why I strongly suspect that synthetic t4 just isn't for me.

Thank you for confirming my suspicions/reservations. I felt really good for a few days over the course of these past 10 or so months, but it never sticks. I felt amazing for a few weeks on armour, but worse than ever after around 6 weeks.

I'm not trying to be a difficult patient. I'm just trying to find the cocktail that works best for me. I am always skeptical of any one-size fits all solutions, and this one is no different.

Thank you.

[Barb135]

I'm somewhat baffled by your medications.  What generic levo has no dyes or additives?  If it's pills, what holds them together?  What's in your thyroid extract i.e how much T4 and how much T3?

While it's true that symptoms are the most important part of thyroid treatment and labs are merely a guideline, trying to adjust meds without labs is something like trying to shoot a gun in the dark, when you can't see your target.

I'm quite leery of a doctor who does minimal labs and doesn't test FT3, which is the actual hormone used by the individual cells.  I'm also leery of a doctor who insists on just one protocol, which happens to be his own, even if he has has several books published.  

Your symptoms ("constipation, a constant ringing in my ears, my heels and knees are dry and cracked, and I look just awful", plus your general feeling of illness) are all those of hypothyroidism.

As for the answer to your initial questions:  1) While we don't all achieve complete wellness in a year (it took me almost 5 yrs), we, typically, can tell within a short time, whether or not the protocol we're using is the right one, for us.  It seems that you aren't completely comfortable with your treatment, which is an indication that it's probably not the best one for you.  

2)  No, you're not crazy for wanting to try something different.

3)  I'd ask for a different protocol and if this doctor isn't willing to try anything but his own protocol, get a different one.  Sounds like he's trying to treat everyone the same and that simply doesn't work.

Offhand, I'd say your FT3 is most likely too low in the range, which is why your symptoms aren't being alleviated and you'd do well with an increase, whether it be 100% desiccated or something else.

[toni2251]

Hello
I wanted to share with you my experience. I've e been on armour for a little over a week. Prior to that I was on synthroid 137. I could barely see, and I just still felt sick. I found a doc who prescribed armour. He told me that my constipation was from low magnesium. I'm currently taking 1000mg a day. No more constipation. When I was on the synthroid and because my eyes were so bad, I decided to lower my dose. My legs begin to burn like fire. I'm sharing this with you to let you know that thyroid disease slows down the metabolism and slow every system down. Our bodies were probably depleted of vitamins and minerals which caused thyroid disease. When we take meds our system begins to speed up causing all sorts of problems. Vitamin defiencies are the most problematic causes and thyroid meds do differ in effectiveness per each individual. Low magnesium, low iron, low vitamin d, low vitamin k for our eyes, low b12 which is so important, and the list goes on. I am really trying to change my diet and supplement greatly with vitamins and nutrition. I'm realizing that thyroid disease is so related to defiencies. I did not believe that at first but the more I take my vitamins the better I feel. Armour is doing ok for me. I realize I can't take it and go back to sleep or I will feel horrible.  My body needs to stay in motion. Oh one last thing before I take any new meds or vitamins I exercise first. This puts my metabolism at a normal range and it ensures proper distribution of my meds. If my system is slow the meds don't flow through my body properly and they make me sick. The meds remember either slow down or speed up our systems. Exercise helps to keep our body balanced. I don't mean any kind of hard core exercise. Just a walk around the block helps my meds to work eficiently. Hope this helps.

[NightOwlz]

Thanks for the replies! The doc adjusts the dose based on symptoms and uses the other labs as a guide, I guess. He is a great listener regarding symptoms and symptoms do override lab results.  Maybe I'm being impatient and should continue tweaking further, because some things have changed for the better. I just don't know how long I need to stick with this protocol to determine whether it is what is best for me.

Regarding labs, I don't have a recent one. Initially, I had been getting them every 6 to 8 weeks, but after a certain point, maybe back in August, we've been tweaking the dose solely based on symptoms, so the labs are probably very different now. I'm due to get them tested again in a few weeks.

I started out on 75 mcg Tirosint and 7.5 g of thyroid extract, and am currently on 114 generic levo (w/out dyes or additives) and around 12 g thyroid extract. The increases were made over the course of around 10 months. I also take around 5000 - 6000 ICUs of vit d, and I take iron (1 tab of ferrous sulfate) and vit. C, around 1000 mg.

I know that the positive changes are due to the ndt, because after having been on levoxyl for around 6 years before I started to try other options, I couldn't see at all while driving at night. I also feel more like my old self in terms of demeanor/mental clarity, but I'm still a long way from feeling right.

[Barb135]

I had that chest issue when I was still quite hypo.  Every breath was a struggle and physical activity became quite difficult.  I also didn't sleep well, often, getting only a couple hrs of sleep/night.

You might start by posting your most recent labs, with reference ranges, and also tell us exactly what med/dosage you are on and how long you've been on it.

If you aren't getting Free T3 tested, how would your doctor know whether or not your levels are optimal?

[Pattyisha]

I don't have an answer for you(sorry) but just wanted you to know that you are the first person I've read about having the same lung/chest issues that I've been dealing with. I'm currently on armour thyroid but my doc recently added cytomel to my regimen. It's only been a week, but I'm hoping to have some improvement. I can also relate to the looking terrible and the insomnia. Just wanted you to know you aren't alone. Hopefully someone else can give you the answers you need:)