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Strange thyroid problems

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.  
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649848 tn?1534633700
COMMUNITY LEADER
I'm very sorry to hear about your problems.  

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.
Helpful - 0
2073340 tn?1331607309
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.
Helpful - 0
Avatar universal
For Feb 25 I have the following tests and results:

FREE T4 0.86 0.76 - 1.46 ng/dL
T3 FREE 2.68 2.18 - 3.98 pg/mL
THYROID PEROXIDASE AB 9100.9   - <=60.0 U/mL

My primary care doc plans to take some more results soon.  I see him next week Monday.  
Helpful - 0
Avatar universal
Adderall is prescribed for me mainly to help treat idiopathic hypersomnia (excessive sleepiness) and helps.  
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
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
Helpful - 0
Avatar universal
Thanks so much for your help, Barb.  

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.  
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
While TGab may be present in Graves disease, the definitive test for that is Thyroid Stimulating Immunoglobulin (TSI), not TGab.......  TPOab and TGab dx Hashimoto's.  

Are you still on the thyroid medication?  Are your symptoms getting any better? Your labs were quite some time ago; are you scheduled to be retested soon?  

Have you done anything about the low vitamin D and B12?
Helpful - 0
Avatar universal
I do have Hashimoto's thyroiditis.  Found out a few weeks ago.   Just got around to posting about it.  

The doc told me in an appointment since the blood test that Thyroglobulin antibodies were for detecting Grave's disease, which is responsible for some cases of overactive thyroid.  
Helpful - 0
Avatar universal
I asked my doc (via electronic messaging) whether Thyroglobulin antibodies should be tested.  He said no.  (I don't know what he'd doing online on a Saturday.)
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
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.
Helpful - 0
Avatar universal
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?
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
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.
Helpful - 0
Avatar universal
The primary care doctor who originally did not test for the antibodies, I found from a phone call from the nurse at his office.  

Do you think it would make a difference to find out whether I have Hashimoto's?
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
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.  
Helpful - 0
Avatar universal
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.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Wow, you're lucky that's all you have.  Ask for the antibody tests; that could tell you a lot more about what's going on.
Helpful - 0
Avatar universal
I have Medicare and Medicaid, both managed by Molina.  Almost no charges to me for any medical care.  The exception is that brand name medications require $3.30 copay--generics do not cost me anything.  
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
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.
Helpful - 0
Avatar universal
No, he didn't talk about getting the thyroid antibodies tested.  Is that costly, too?  
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Did you talk to your doctor about getting the thyroid antibodies tested?
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
You're right - consistency is the main thing, although taking levo with food or drink, other than water, then waiting the specified time, could cause you to need higher doses of med.

I'm guessing your magnesium deficiency has a lot to do with your symptoms.  I wonder what your calcium levels might be, since magnesium is essential for the absorption of calcium.

Many of us have been pegged hypochondriacs and/or diagnosed with depression, anxiety, etc because of our thyroid or related issues.
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Avatar universal
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.  
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
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.
Helpful - 0
Avatar universal
Oh, and I was not sure serum was, but now I know that serum = clear liquid remaining after blood clots.  
Helpful - 0
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