For about as long as I can remember I have been irritable, anxious, depressed, sometimes fatigued, and frequently had a hard time focusing. Then, over the years came the diagnoses of Schizoaffective Disorder, Obsessive-compulsive Disorder, Asperger's Syndrome, ADD, and Idiopathic Hypersomnia. (The ADD is questionable because of the overlap of symptoms with other disorders, but I really think I have it.)
Although in the long run, I know doing without this hormone will cause serious problems of fatigue and depression.... when my thyroid went underactive and untreated for a while, I felt better able to focus and less anxious... but that extreme hypothyroidism caused some major problems; for instance, I think I vomited once or twice because of that and probably some of my sleepiness was because of it during that time.
But these days, if I skip my Levothyroxine, I can focus better, feel less anxious/obsessive, feel less irritable, less depressed; I start to get stomach pain, muscle aches, and joint aches. Didn't happen this morning because I didn't have the pills, but did happen this afternoon after I got the Levothyroxine from the pharmacy. Honest. The pattern is not going away. My primary care doctor says it's an imagined thing caused by my anxiety disorder(s). I am pretty convinced it is not caused by that.
Do you have current thyroid blood test results you can post, along with the reference ranges, since these vary from lab to lab and must come from your own report? This will help members better assess your situation and comment more fully.
Are you aware that a lot of the symptoms for the disorders you mentioned are also symptoms of hypothyroidism and once the hypothyroidism is alleviated so are other disorders?
How long have you been on the levo and what's the dosage? Maybe you are over medicated, which could explain why you might feel better off the medication for a while. Posting current labs will help determine this. Be aware, though, that it takes 4-6 weeks for a medication/dosage change to take effect, so what you did today, won't affect you for a while, but what you did a while back will affect you today --- unless - yes, there's always more!!
It's possible that you are reacting to the fillers/binders in the medication. Different manufacturers use different fillers/binders and we often see reaction to them. You can try a brand name medication such as synthroid, Levoxyl, Tirosint, etc, which will be the same all the time. With generic levo, your pharmacy may not get the med from the same manufacturer every time, so while the dosage of medication is the same, the fillers/binders will be different.
Have you had any adrenal function tests done? We often find that people with adrenal issues don't tolerate thyroid medication well; therefore, adrenal issues should be addressed before thyroid issues.
Even though anxiety can play a huge role, I think your pcp is wrong; your symptoms are not imagined. We just need more information to help point you in a right direction.
My TSH results were 0.676 when last done (Oct 22, 2011)--and reference range 0.358-3.740. Interesting that you ask the reference range, because I thought those were supposed to be the same for everybody. The dose is 150 mcg; I have been on it for for more than a year. I knew it takes about 6 weeks or so for full effect. I've had an underactive thyroid for probably 6 years(?).
I was aware that a lot of the symptoms listed were for untreated hypothyroidism. The strange thing is that the thyroid replacement pills seems to CAUSE them.
I've thought of the filler/binders/dyes, but I doubt any of those are causing this, because the pills seem to ALWAYS has the same effect, no matter what manufacturer of the pill or the pill strength (different dyes are put in different tablet strengths)--though I don't actually keep track of changes in the manufacturers...
I don't think I've ever had any adrenal tests done. Doesn't that very according to CNS state? Thanks for the response.
Is TSH the only thing your doctor is testing for? TSH is a pituitary hormone, which is a screening tool, at best, but many doctors use it as the "gold standard" for thyroid testing; they keep a lot of patients very ill. He should also be testing the active thyroid hormones, Free T3 and Free T4.
Free T4 is the "storage" hormone and must be converted to Free T3 prior to use by individual cells. While the conversion is supposed to happen "automatically", there are quite a few of us who don't convert adequately; therefore, you could have a normal TSH level, with a high FT4 level, but very low FT3. Since FT3 controls the metabolism, heart rate, body temp, along with other things, it's most important.
We do mainly look at TSH range as 0.3-3.0, even though a lot of labs use outdated ranges. The FT3 and FT4 is what I was most interested in, and those ranges do vary from lab to lab due to different methods/standards for running the tests, along with the fact that they don't always report in the same units.
Can you ask your doctor for these tests? Additionally, do you know if you have Hashimoto's Thyroiditis? That's an autoimmune disease in which the body sees the thyroid as foreign and produces antibodies to destroy it. You would need antibody tests to determine that - those would be Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab).
Would be great if you can get your doctor to order these tests (TSH, FT3, FT4, TPOab, TGab); if not, you probably need to look for another doctor because this one is going to keep you ill.
There should be a pattern for adrenal hormones - circadian rhythm. Levels are usually highest in the morning, preparing you for the day; lowest in the evening, preparing you for sleep. Adrenaline is the "fight or flight" hormone that gets you through a tough time/crisis; depending on your state of mind and/or the happenings around you, you could be in a constant state of "being ready" for something. I'm researching this, because I think this is something that's been affecting me for a while. Talk to your doctor about adrenal fatigue; some will pooh-pooh it, others will take it seriously.
I'd also suggest that you get Vitamin B12, D, calcium, magnesium and selenium tested, as we find many people with thyroid issues are deficient in these vitamins/minerals, which can also cause a variety of symptoms that can mimic thyroid issues or other conditions.
If your doctor refuses to test for the FT3, FT4 and antibodies and/or isn't willing to test adrenals, or the other things I've mentioned, you're going to need a different doctor in order to get well.
My previous PCP, an internist, I know did FT4 done at times; this was over a year ago, before I switched PCPs. I am not sure what the current PCP, a family practice doc, actually calls for when writing up lab orders; when I got the results from him by U.S. mail, they just said "in normal range", and I had to call the clinic to the results. The results I quoted from above were actually ordered by my psychiatrist.
The PCP I had more than a year ago once got left a message on my answering machine after I had left a message trying to explain my concerns: "Hey, there is nothing wrong with that PILL you are taking."
What does the magnesium, selenium, calcium, and vitamins B12 and D have to do with this? I bet my B12 and D are O.K., because there is a lot in my diet
Sorry to keep posing small comments, but I've done some searching and it LOOKS to me that the supposed connection between lack tolerance of thyroid replacement and adrenal problems are not standard medicine/physiology, but suggested by nutritionalists.
Well, I did see my doc last week and I took a printout of this conversation along to ask him questions about what you said. He saw me looking at the paper, and he said, "Let me see that". Then he said that I don't need to be doing that and should come to see him instead. He did have a number of the minerals/vits you suggested tested, though (I don't have a complete list because I don't have the lab results on paper or released to me via my electronic records, so I don't remember them accurately)--along with TSH, FT3, and FT4. He had TSH, FT3, and FT4 tested in all the previous tests he did, too. I know magnesium was tested, too.... TSH was high (perhaps because I wasn't taking my pills as regularly as I was prescribed), and magnesium was low.
It's okay to post small comments and I'm sorry I haven't responded - "life" sort of took over for a bit.
In the U.S (last I looked at the map MI is in the US... lol), your doctor is required by law to give you a copy of all your lab reports upon request........ he can not legally withhold them from you... If you didn't ask for a copy, you need to...... I *never* walk out of my doctor's office without a copy of my labs. My labs are my "running record" of my thyroid condition; on each report, I note the medication(s)/dosage(s) I'm on, along with whatever symptoms I have, so I can show my doctor that I feel best at certain levels......
His comment that you "don't need to be doing this" tells me that his ego might be bigger than he is........ it also tells me that I might have struck a nerve with him........if he's doing his job properly, he shouldn't really care; he should be willing answer every single question you might ask, not just telling you you shouldn't be asking questions of others. We learn by talking to other people.......
I really need to know what your actual levels of the tests were - just telling me "high" or "low" isn't enough. I need numbers, along with ranges because just falling within a range means nothing to me - it depends on WHERE in the range you are...... some ranges are too broad and if you fall in the bottom 1/2 (or too high in the range), symptoms may be inevitable.
You asked: "What does the magnesium, selenium, calcium, and vitamins B12 and D have to do with this? I bet my B12 and D are O.K., because there is a lot in my diet"........... magnesium helps keep muscle/joint aches down, plus it can help with the constipation that's so common with hypothyroidism.
Selenium has been shown to help in the conversion of FT4 to the usable FT3 (if I don't take selenium daily, I can really tell it).
Calcium, of course, is vital for strong bones, teeth, etc, but it's also a calming vitamin and may help you sleep better, plus it controls electrical impulses in your body.
Vitamin D and magnesium are essential for the absorption of calcium; I've already discussed magnesium - vitamin D deficiency has its own laundry list of symptoms, which often mimic those of hypothyroidism.
Vitamin B12 is essential for proper nerve function. Deficiency can cause debilitating fatigue, numbing/tingling in the feet/legs/hands/arms, among other things.......
I have to take weekly vitamin B12 shots in order to keep my levels up, because even though I eat plenty of foods that contain it, my body doesn't absorb it. I also used to think that my vitamin D levels should be adequate, because I spend a lot of time in the sun....after all, I live in the "sunshine state", spend hours outside every day, but tests showed I was deficient.. you live in MI so there's a long period of time that you have to be bundled up outside, therefore, your levels of vitamin D may not be adequate, since the sun must hit bare skin, not layers of clothing..
You might also want to look into Seasonal Affective Disorder (SAD), which is very common in northern climates - both my husband and I suffered from it, when we lived in Iowa, because so much of the year had to spent inside.
The sooner you can get lab results (and reference ranges), the sooner we can help figure out what's up with you........
BTW -- make sure you take that thyroid medication every day - it won't help you when it's sitting in the medicine cabinet...... lol
My PCP gave some of the results--the ones that were out of reference ranges-- over the phone. I got the blood drawn while at his office, then he called back me a few days later. I don't think he is trying to hide the results from me. I will get them in paper via U.S. mail or through my electronic medium that this health system uses.
I was somewhat thinking the same thing, I think, in the back of my mind about his saying I need not go to the internet. If I had not, I don't think he would have done the magnesium test.
Interesting about the selenium.... I don't think he had that test done.... I think he said it was very costly, and he might have given other reasons, too.
I think he said that if vitamin B12 was low, my blood cells would be out of proper shape.... or was that one of the other ones he decided not to get done? But my blood cells have always looked fine in the CBCs done.
Yes, I think I might get Seasonal Affective Disorder on top of everything else. My understanding is that that has more to do with light reaching the eyes than the the skin. My Adderall helps with that.
Do get a printed copy of the test results and post them here; results do not have to "out of range" to make you feel poorly.
They always have a reason for not doing specific tests, don't they? Too expensive, not useful, etc.........
Often when B12 is low, the RDW is high or MCV is off, but not always...... you have to have the specific test in order to tell and it's not that expensive.
SAD has to do with the amount of light, whether it be the skin or the eyes. Simply looking out the window and seeing the sunshine on a cold winter day, is not enough for either myself of my husband. We found that staying inside was very depressing. We now live in FL and during those times that we get rain (or cold) for days at a time, we both tend to get a bit "down and out".......
Once you get a copy of the lab report, and post the results here, with reference ranges, we can look at them and try to figure out what's up with you. As I said, results can be in "in range" and still not right for you.
I started taking selenium and feel more energetic and more focused. I take selenium at about bedtime and almost immediately getg a strong feeling of akathisia and a burning of the skin with flush (like the sensation and flush of niacin). The next morning, I feel fine, but with my first dose of Adderall I a big case of akathisia again. I'm trying to figure if I should stop the Adderall.
Why a paper copy vs screen. Well so you have it physically so you can take it to any other Dr you may choose in the future. Sure you can print it off the screen for yourself.
But having a printed out copy from the health care facility will be I think more credible than a home print out.
Dr's do NOT like to be upstaged. And I find it very curious that he "claims" to have run all these tests. Yet seems reluctant to give you the results. I don't want to call your Dr a liar but I wouldn't be too surprised if once you get your print out of the actual results that some of the tests he said he did were not done.
Bobwhite, you have got to understand that you must be aggressive and your own best advocate. That unfortunately is just the way it is when it comes to Thyroid. The medical industry seems ENORMOUSLY lacking true understanding or Thyroid issues. And is why people have to come to sites like this because the medical industry is simply NOT living up to their responsibilities and treating Thyroid disorders properly.
You are entitled under the law to get a copy. If he refuses, then there is something wrong and he is violating the law. Both of which are indications that you may want to find another Dr.
I recently read that the Vit D that they fortify milk with is the wrong kind of Vit D to do you any real good. A person needs D3 and they fortify milk and other products with D2. So they are doing you little or no good.
I was originally from upper MI and currently live in WI. I have to take at least 2,000 IU of D3 during the winter or I notice the difference and feel down.
It is common for people with low thyroid to also be low on Vit D and B-12. Both of which result in fatigue issues. Again the so called "normal" range are broad for these and many people need to be in the upper part of the range to feel well. So a Dr simply saying "you're good or Your within the normal range" etc are COMPLETELY USELESS. You need to see where you are in the range.
Iron is also another thing to check.
I personally think you are sensitive to medicine. You stated you get a reaction from the THyroid medicine and you also get a reaction for the Selenium or some other medicine. That suggests to me that dye's or fillers on the pills MAY be part of the problem. I might recommend that you try Triosint for your T4 medicine. It is a liquid gel cap and there are no dyes or fillers like the normal hard pressed powdered pills. It is at least worth a try.
I say this because T4 takes several weeks in order to get into your system and have an effect. Yet you report that you almost immediately have a reaction when you take the medicine. This would point to a reaction from the filler or the dye in the pills and it may be a common element in all the manufacturers of the Thyroid meds you tried. Thus my recommendation to try Triosint. Or possibly even natural dissected thyroid like Nature Thyroid (NT) or Armour.
I know many people are not aggressive by nature. But you may have to get aggressive if you ever want to feel well. Like I said it is unfortunate but seems to be what is needed when dealing with Thyroid issues.
No, when I said "printed copy" of your labs, I simply meant don't accept just a verbal report from your doctor or a nurse, because they will often just say things are "normal" without giving actual results.
Yes, selenium is very important; it does help in the conversion of FT4 to FT3. I take 200 mcg/day - at bedtime. I often get Restless Leg Syndrome (RLS), which is related to akathisia, but it doesn't necessarily coincide with taking the selenium. I do find that my FT3 levels tend to be a bit higher when I take the selenium consistently.
If you haven't been taking your thyroid medication on a regular basis, your body won't have a chance to get adjusted to the medication.
To produce adequate vitamin D, the sun must hit bare skin; not layers of clothing. That's one reason why many people in northern areas are deficient. Even being outside on a cloudy day can contribute to SAD.
Interesting link on selenium. I'd run across it once before, but read it thoroughly. This time I did.
The last year my fiancé has also been getting the many diagnoses, such as bipolar, depression, anxiety attacks, past drug related damage. We found out 8 months ago his thyroid levels were at 20 something. He was prescribed synthroid which had been working great and his anxiety and what they called "rage attacks" had almost disappeared. The last month symptoms started back up and his levles went from 3.5 to 10.8 in a matter of a few months.. Even though they had even raised his synthroid levels the time we were last in when he was at 3. We see the doctor tomorrow. I am extremely concerned With the affect his thyroid has on his mental well being.
I have thought of the sensitivity to the pill as you have, flyingfool. But the doc says it almost certainly is caused by the anxiety disorder, part of hypochondria with regard to this issue. Strangely, though, when I switched between stimulant medications--from generic Dextrostat to generic Adderall--the strange side-effects of the thyroid medication go away.
I get sensitivities to lots of things--meds that don't work often not only do not help, but make me feel anxious.
Many people react to the fillers/binders in the medication. I'm still inclined to think you should have been started on a smaller dose and worked up more slowly, in order to let your body adjust.
Do your food sensitivities come and go, or are you sensitive to some foods all the time?
You said "Strangely, though, when I switched between stimulant medications--from generic Dextrostat to generic Adderall--the strange side-effects of the thyroid medication go away." Do you take the medications at the same time? It may be best to leave a few hours between them, if possible.
Tinnitus can be caused, or made worse, by thyroid issues. Once you get your thyroid levels optimized, for you, that may ease.
Your TSH is too high and your FT4 is too low, indicating hypo. Your FT3 looks good right now. While your vitamin B12 and D are "in range", they could stand to be bumped up a bit. I have to keep my B12 level right at the top of the range in order to feel well.
Your magnesium is also too low. Magnesium deficiency can affect your stomach, your brain, muscles, etc. You should supplement with a good brand of magnesium citrate. Do not get magnesium oxide.
Are you taking all your medications at the same time, or eating right away? Thyroid medication should be taken on an empty stomach, with a full cup of water, then nothing to eat or drink for 30-60 minutes. You should wait at least a couple hours before taking other medications as they may inhibit (or enhance) the absorption of your thyroid med.
Yup, I knew that the TSH was too high, FT4 too low, and Mg too low.
I take the thyroid med at the same time as the Seroquel when I get up in the morning, with quite a bit of water. I drink quite a a bit of coffee over the next 60 min or so. That's the way I've almost always done it since starting Levothroxine. For while I would skip... but from what I have heard from pharmacists, pretty much the most important thing is to take it the same way every time. I am doing that now since the medication does not seem to be causing reaction.
The cost to you, of the antibody tests will depend on your insurance (if you have it) and/or the lab you are using. Many doctors won't "suggest" this testing, because they "assume" that thyroid levels in the "normal" range are okay/insignificant and don't warrant further testing/treatment. It will be up to you to ask for it.
I'd suggest that you do so, because high levels of antibodies indicate an autoimmune disease, which will only keep getting worse, as the antibodies destroy the thyroid.
This from my doctor an electronic messaging system:
"You probably do have Hashimoto's thyroiditis. This is the most common cause in the United states for hypothyroidism. It is an autoimmune disorder. I am not the doctor that initially worked up your hypothyroidism. Contact the doctor that initially worked this up to see if they tested thyroid peroxidase antibodies in you. Your treatment still won't change. "
I don't member my previous doctor mentioning it. I will likely call his office tomorrow.
It's correct, that your treatment won't change, but it could help make managing your disease a little bit easier, because you will know that your thyroid will gradually quit working and you'll need periodic adjustments to your med. Hashi "flares" can also make hypothyroidism harder to control.
I recommend you try to find out about the antibody tests; remember, you need both TPOab and TGab.
It's not necessary to know if you have Hashimoto's, because your treatment won't change i.e you will still be treated with replacement thyroid hormones to treat the hypo that results from the Hashi's...... but knowing whether you do, or don't have Hashi's could help you down the road, because you will have a better idea of what to expect, since people with Hashi's can swing hyper, then hypo, etc. They may have "flares" in which symptoms become worse for a while, but when the flare dies down, symptoms lessen, again. It's also nice to know that, at some point, the antibodies will completely "kill" your thyroid, so you will be totally dependent on the medication. I like to have an idea of what to expect, or if I get strange symptoms, what to attribute them to.
My PCP ordered the test antibody test for Hashimoto's. Thyroid peroxidase ab, specifically.
I know a PA-C (he is on my FB list) who used to work for an internist. He said such tests are usually done in endrocrinology--by which I assume he means they done by endocrinologists. Should I have an endocrinologist?
You need more than Thyroid Peroxidase Antibodies (TPOab); you also need Thyroglobulin Antibodies (TGab), because some people with Hashi's have one or the other, a very few have both.... if you're only tested for TPOab, and it comes out negative, you might still have the TGab....... insist on both.
These tests don't have to be ordered by an endo...... my ENT originally did TPOab, but then, both my endo and pcp later did TGab, as well...... Any doctor who can order labs can order these tests. Your PA-C friend may have been limited by what his supervising doctor allowed - been there, done that, but as a PA (assuming you mean Physicians Assistant), he could order those tests if the doctor allowed.
You might want to see what the TPOab comes back as, and if it's negative, ask for the TGab, and go from there.
We didn't find whether the vitamin B12 was low or okay, but I assume not for a number of reasons. Vitamin D was not low according to blood test. And, I am getting in the sun these days (!) because it has been warm here in the lower Peninsula of Michigan.
I am taking the levothyroxine, and it seems to be helping with ringing in the ears. Whether it helps with energy, I am now sure because I have settled in my mind more that my current Adderall dosage is okay, i.e., kept thinking that the optimal dosage was "out there" somewhere.
Recommended range for vitamin D is usually 30-100 - your lab is using an odd range. Most recommendations are for vitamin D to be at least 80, which makes yours very low.
Your Vitamin B12 is only mid range; I have to self inject weekly, in order to keep my level at the top of the range, or I don't feel well. You might try an OTC sublingual or liquid to bring your level up. Adequate vitamin B12 is critical for energy.
I'm not familiar with adderall, but remember that some medications for ADHD, depression, etc can cause tiredness/lack of energy
I have learned so much from this conversation! I'm only 9 days post op tt and I am so afraid of what my future will be like now that I don't have my thyroid. I was diagnosed with having Graves Disease and a multinodular goiter that was causing difficulty swallowing and breathing. My recovery has been rough because I had quite a bit of inflammation at the incision when I woke up from surgery. I am no longer in pain but i'm having hypo symptoms except i've completely lost my appetite and i'm real jittery. I've been trying to gather as much info as I can for my appointment with my endo. I go to UVA for treatment even though I live an hour away. My pcp felt that I would get better care up there and so far she is correct. Coming home I was put on 125mcg levothyroxine and about 3000 mg of calcium. I'm honestly scared right now because for two years I've been sick and i've been a test dummy for these local Drs who said I was bipolar, and had an panic disorder. I also had 15 cortisone shots in my back last year for nerve damage that wasnt there and I'm feeling that all of this was related. Thank you so much for this enlightening experience. I have learned (the hard way) that you MUST be your own advocate because these Drs can sometimes be like mechanics, do just enough to get you by but leave enough wrong to keep you coming back.
The fact that you have no appetite and are jittery, indicates that you might have been started on too high a dosage.
It's recommended that meds be started at very low levels and worked up slowly, to prevent swinging to hyper...
For the sake not hijacking this thread, how about posting your own, detailing your history, along with current labs, including reference ranges, which vary lab to lab and must come from your own lab report.
You can start a new thread, by clicking on the "Post a Question" button at the top of this page. This will also help get a better response to your issue.
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