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Avatar universal

Just starting, what is next test?

I have been suffering with all the debilitating symptoms associated with hypothyroidism for years; however, tests always showed normal until now. I finally took it upon myself to see an endocrinologist, and he ordered a 12 hour fast with an a.m. blood draw. Some of the first results are:

TSH (Thyroid Stimulating Hormone) 6.35 mlU/ML (High)
Reference Range 0.27 mlU/ML - 4.20 mlU/ML

T4 (Thyroxine) - Free 1.25 ng/dL (Normal)
Reference Range 0.93 ng/dL - 1.70 ng/dL

T3 (Triiodothyronine) - Free 3.68 pg/mL (Normal)
Reference Range 2.00 pg/mL - 4.40 pg/mL

My questions:
Is high TSH alone an indicator for treatment if symptoms are extreme?
What other tests or exams should I ask for before I consent to any treatment, or is TSH enough?

I am beginning to see that thyroid disorders and diagnosis is not so simple? Can be complicated?

Thank you!
Best Answer
649848 tn?1534633700
COMMUNITY LEADER
While your FT4 and FT3 are "in range" your FT4 is lower than most of us need it to be to feel well.  That and your high TSH indicate that your thyroid is failing.  Free T3, often, is the last of the hormones to drop out of range.

You need to ask your endo to test for thyroid antibodies, Thyroid Peroxidase Antibodies (TPOab) and Thyrglobulin Antibodies (TgAb), to confirm Hashimoto's.  If you have Hashimoto's, your thyroid function will continue to decline as time goes on.

It's not unusual for symptoms to appear long before actual thyroid hormone levels decline from the normal ranges.  Remember, that TSH is a pituitary hormone, not a thyroid hormone.  It's produced to stimulate the thyroid to produce more thyroid hormones and it rises when thyroid hormones are inadequate, even if they are still "in range".

When I was, finally, diagnosed, my TSH was 55+ and FT4 was 0.6 (barely out of range), but I'd had symptoms for years and my doctors had kept telling me there was nothing wrong.  The doctor who diagnosed me refused to test antibodies and went by nothing but TSH - he kept trying to adjust my medication based on that, alone... don't let that happen to you, as I was kept ill for nearly a year when it was totally unnecessary.

Along with antibody tests, you should also ask for a thyroid ultrasound to determine if you have swelling/inflammation and/or nodules on your thyroid.
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649848 tn?1534633700
COMMUNITY LEADER
Heart palpitations aren't the only symptom you might get if the 50 mcg is too much.  Don't count on those to be your indicator, because I had those when I was very hypO, so they go both ways... You might just get a little anxious, nervous, be unable to sleep, etc.  Often, though symptoms do worsen, or new ones appear, before they get better, so if you wait a few days and let your body adjust, they'll go away.  Might just be a good idea to talk to your doctor about splitting the pill half right off the bat and just starting at a lower dose from the beginning, but that's up to you.

The synthetic vs desiccated is probably going to come down to personal choice and whether or not your doctor is will to prescribe it.

You don't have and swelling/edema or blood pressure issues and your doctor prescribed hydrochlorthiazide?  I'd certainly be calling to find out why...

You don't need to stop the calcium... just make sure you leave a 4 hour separation between it and your thyroid medication.  For instance, you take your thyroid medication first thing in the morning on an empty stomach with water then don't eat or drink anything for 30-60 minutes (per the directions on the insert that comes with your med).  Then wait at least 4 hours before taking any calcium, magnesium or iron supplements - this should also be in the instructions that come with your med.

Since I take both T4 and T3 thyroid med, I take my T4 med and half my T3 firs thing in the morning.  I take the other half of my T3 around noon, so that means I can't take calcium until evening, so I take mine at dinner/bedtime.  That doesn't mean I don't eat calcium containing foods, because there are hardly any foods that contain as much calcium as a supplement.  
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Avatar universal
"50 mcg Levo might be a bit too much to start"---how soon would I notice adverse reaction (palpitations) if it is too high? It seems I already have the listed symptoms of too high dose, except heart palpitations.

"synthetic vs desiccated"---obviously, I'll just have to wait and see.

"hydroclorothiazide...swelling/edema and high blood pressure"---I wondered why the diuretic? I don't have those issues, I actually have bp that runs low, 80s-90s/50s-60s.  

I've read that calcium supplements can interfere with the Levo with a suggestion to not take it within four hours of each other. Should I stop the calcium for now...he just told me to start taking while I was in the office before the tests. I didn't think to ask, but I guess I'll call the office on Monday.

Thanks!
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649848 tn?1534633700
COMMUNITY LEADER
Your blood sugar level of 96 is not "horrible" because it's still under the upper limit of 99, but know, yourself, where it's headed, so I don't have to tell you what you need to do.  Sugar and salt both contribute to inflammation in your body and of course, that makes you feel worse.  

How do I know these things?  From my research and my own experience!!  

50 mcg Levo might be a bit too much to start; personally, at your age, I'd have started you at 25 for a couple of weeks, then increased it 50.  For those of us that older, it's usually best to start lower and work up slowly to make sure we tolerate the med.  You can always split the pills for a couple of weeks if you want or you can try the full 50 and see how it goes.  

Some would tell that there's a big difference between generic Levo and brand name Synthroid... I've taken them both and actually did better on the generic than I did on Synthroid.  

As for the controversy over synthetic vs "natural"... The synthetics are identical to what your body would produce if it could.  The "natural" hormones are desiccated pig thyroid.  Pigs produce different amounts of the hormones, T3 and T4, than humans do.  Humans produce much more T4 than T3 (approximately 11 times more), while pigs produce much more T3 than T4...  so it's completely backward from us and I, personally, don't consider that "natural" because it's not the same.  That's MY opinion, only.

I, personally, prefer synthetics, because many of us don't need the extra T3 that's present in the desiccated hormones and do fine on T4 meds and those of that do need extra T3 don't need the  large amounts present in the desiccated hormones so we get by with just a small amount of added T3 in the form of cytomel or its generic liothyronine.

That said, there are many people who absolutely do much better on desiccated hormones than they do on synthetics and all options should be kept open.  

So anyone saying that "everyone" needs one med or the other is absolutely wrong... whichever med makes one feel the best is the med one should be on.  

Keep in mind, though that many doctors refuse to prescribe desiccated hormones, just as many doctors refuse to prescribe additional synthetic T3, since they believe that everyone does well on synthetic T4...

Since you're on the hydroclorothiazide, be sure to drink a lot of water, since that's a diuretic and you could become dehydrated with it.  Also be sure to limit your salt (sodium) intake.  Sodium contributes to the swelling/edema and high blood pressure, so if you eliminate sodium and drink a lot of water, you can eliminate a lot of the swelling.  Dehydration can cause muscle cramps, nausea and other side effects, so beware of that as a side effect.
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Avatar universal
Levothyroxine 50 mcg (.05mg), one per day before breakfast  and  hydrochlorothiazide (Microzide) 1.25mg, one per day

Are there any concerns for generic over the brand Synthroid?

And what about the controversy over synthetic vs. natural? Everyone I know seems to do fine on the synthetic, but lots of complaints online. I know we can't listen to everyone, but I'd like your thoughts on that.

Thanks
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Avatar universal
My glucose read 96 mg/dL (Normal) with a Reference Range of 70 mg/dL - 99 mg/dL, so it's terrible! I have never had a reading like that and I'm sure it's because of what I am consuming! Sugar and salt addiction has been in high gear for awhile. I know I am one for it going into overdrive once I get started; however, when I cut out bad carbs it just miraculously goes away. Why am I so bad to myself?!? I guess when those periods of hopelessness of ever feeling good again get out of control, I just cave and think I'm "comforting" myself. It's a good thing I'm not a drinker...I'd probably be abusing that, too.

Your info is so good and ties into what I find to be the best info (e.g., the sublingual or liquid B-12, preferably the methyl B-12). A friend of mine just recommended that to me (via his doctor who recommended it). How do you know so much?!? :)

Yes, I went through menopause rather early, done by age 44 with no symptoms like hot flashes. I've often wondered about that, or is that not all that early?

I'm still sitting here today waiting to feel well enough, energy-enough, and pain-free enough to go get the Rx! I am excited (cautiously) to see if we have found the magic bullet, yet I can't go get it! I was good to go last night, but they didn't have it ready. Mornings are always so bad. I think I will make the push in a few and then I'll give you the specifics on what and what dose. I really want to get to the grocery store, too, but that is always a project.

Thanks again,
Faith
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649848 tn?1534633700
COMMUNITY LEADER
I think you should do the 2K vitamin D as recommended by the endo... When you get into the really high dosages, you need doctor supervision.  

Your vitamin B-12 level is too low in the range... my lab puts a note on the report that anything under 500 can cause symptoms.  I have Pernicious Anemia and I have to keep my level right at/above the top of the range in order to keep symptoms at bay.  Get a good quality sublingual or liquid B-12, preferably the methyl B-12, since it's "body ready"...

Potassium and chloride are both electrolytes and with potassium low and chloride high, that is a potential problem.  You might ask about supplementing potassium... if my levels get too low, I have really bad cramps in my feet/legs and hands.  The diuretic may have some potassium in it; you can check the label and see.

Changing your diet isn't going to "mess" with anything... that will always make things better if you change it for the better.  Eating fresh produce is always for the better and eating things like processed foods that aren't good for you can certainly affect the way you feel.  Which, since you mentioned it, what are your blood glucose levels like, since you don't eat healthy.  

I'm glad your doctor went ahead and started you on the Synthroid.  What dosage did he start you at?  You should be aware that it takes 4-6 weeks for the dosage to reach full potential, so while you might notice some small improvement, don't expect anything huge right away.  You should also be aware that we're rarely started at our full dosage, so you can expect to be bumped up in dosage as time goes on, especially if symptoms don't improve.

The reason I asked about your age was because I was wondering if you might near or into the menopause phase, since lowering reproductive hormones have profound effect on how we feel, as well.  I'm assuming, at this point, you're probably through that?

Don't worry about going on... sometimes it helps to get it off your chest, when you know there's someone who understands what you're going through.
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Avatar universal
Hi Barb,

My endo's office just called to tell me they were calling in an Rx for Sythroid and I should start taking it in the morning; I guess I was not expecting that to happen so soon. Of course now I am anxious about what to expect and when; should I not really notice anything other than to gradually start feeling better? Or could there be unpleasant surprises of some sort? I know everyone is different and there does not seem to be any magic bullet for straightening this our. It's not like I'm taking a drug, but rather adding something that is supposed to be there naturally, right? But then again, what do I know?

I am also being prescribed a diuretic. I'm assuming that has something to do with the results of either my blood or urine labs, but the nurse did not go into that. Also to start 2000 Vit D (which I already did). I was taking Vit D but ran out and decided not to start until after I had it tested...just to get my baseline. That may or may not make sense. I was taking quite a bit and I just thought it would be good to know where I was w/o supplementing it. I know that although he is only recommending 2K a day many sources are now saying 4K-10K! I'm not sure if I should go ahead and up that a little more?  
Vitamin D 25 Hydroxy Level 28 ng/mL (Low)
Reference Range 30 ng/mL - 100 ng/mL

We set an appt for six weeks at which time the doc will go over everything and evaluate further. For right now he just wants me to get started on the synthroid, diuretic and D, and of course keep in touch if there are any concerns on either of our parts.

Vitamin B12 Level 449 pg/mL (Normal)
Reference Range 211 pg/mL - 946 pg/mL
Yes, I think a little boost is called for? I used to take B12, well actually a "super B" complex and I will resume.

Potassium 3.7 mEq/L (Normal)
Reference Range 3.5 mEq/L - 5.1 mEq/L
This looks too low, too, and I also wonder about magnesium. I don't know if I should do something about that asap or not. I used to eat bananas every day and I don't know why I stopped, most likely because I could not keep up with fresh foods due to my condition. Maybe even that would help. I don't know if either of those two could interfere with the kidney/calcium/etc/ issues? I'm wondering if I should hold off on messing around with anything else so he can get a clear baseline from just starting the synthroid and then seeing what happens to other readings. I also have been on a God-awful diet (i.e., I don't eat healthy at all mainly due to issues with shopping/cooking/appetite from major fatigue, muscle and general weakness, and chronic pain). Hopefully, synthroid will give me some energy so I can once again start living like a regular human being? I know that just knowing someone has found some possible source of my horrible condition will be lifting my spirits! Hope is a powerful thing!

Another "off" result was from the urine collection, and I'm wondering if that has anything to do with the diuretic? There are all kinds of results coming in from that as well, and maybe he, like us, looks at various levels, not just if they are in line with the reference range?
Chloride (Urine) - 24H
107 mEq/dy (Low)
Reference Range 110 mEq/dy - 250 mEq/dy

I am a very "young" 64, lol. My mind feels like 44 or 24...if I could just get it and my body to perk up a little. :) I should still be working and living a much fuller life; I know 80+ yr olds still out on the golf course, traveling, etc., I could never do that right now!  I have had symptoms of hypothyroidism since I was in my twenties and they just got worse overtime.

And how often do the doctors ask, "Do you feel depressed?"  It's like "Hell yes!" How do they think one would feel if they have missed out on so much for three years?! My life literally came to a screeching halt and it has been a huge mental struggle to hang in here, keep searching and try to stay mentally strong!

Sorry to go on and on when you only asked for my B12 and D levels, and my age! But there ya go....

Thanks SO MUCH!
Faith
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649848 tn?1534633700
COMMUNITY LEADER
What were the exact levels for vitamin D and B-12.  Even "a little low" for vitamin D can cause symptoms and vitamin B-12 "in range" can cause symptoms if not high enough in the range.  

Other pituitary hormones include LH, Growth Hormone, Prolactin, ACTH.

Yes, calcium and the kidney stones can be connected to parathyroid issues.  Low potassium is a problem...  The other things depend on how much too high they are and what other related parameters might be out of range.

It does, certainly, sound like more than one issue going on.  You can post your actual vitamin D and B-12 levels and we can either confirm that they're part of the problem or rule them out.

Do you mind telling me your age?
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Avatar universal
Thank you, Barb. I'm starting to see this is rather complicated, and yes, there are other "out of range" results coming in, and there seem to be several issues. My D was a little low, the B12 is normal as is FSH. What are the other pituitary hormones?
I probably should just sit tight until everything comes in, and then I'll pm you for your take on things if you don't mind.
Yes, I think there is definitely something going on with calcium and the kidney and who knows what else. I think there is a connection to the parathyroid with the calcium and stones? The BUN/Creatine Ratio is high at 26, Anion Gap is high at 14.2, potassium is low....lots of things to put together to understand what is going on. I just turned in my 24 hour urine collection jug, that will probably tell more about the kidney?

Maybe it is more than one thing causing my chronic pain and other debilitating symptoms?

I realize this is a lot to dump in your lap, and I do appreciate your thoughts.
Thanks for taking the time to answer,
Faith
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649848 tn?1534633700
COMMUNITY LEADER
Your antibody levels indicate that you don't have Hashimoto's, but that doesn't mean you aren't a  candidate for thyroid treatment...  It just means there's another cause for your high TSH, than Hashimoto's... most likely a pituitary issue.  The antibodies don't determine whether you get thyroid treatment or not - they determine whether you have an autoimmune thyroid disease, which you, apparently, do not, at this time, though that doesn't mean they might not show up later.

You're certainly a candidate for some type of treatment to get your life back together, but just what that treatment is, remains to be seen, when all the test results come back in - it might be more than one thing and your doctor may not be willing to give thyroid hormones with a TSH of only 6 and so called "normal" thyroid hormone levels.  

Vitamin D necessary for the metabolism of thyroid hormones, so if that's low, that will have an effect on your thyroid hormones, but not on TSH.

Vitamin B-12 deficiency can cause the most debilitating fatigue you can ever imagine.  I have Pernicious Anemia and before I got treatment for it, I felt death warmed over all the time.

FSH is a pituitary hormone and will help determine if there's a pituitary issue.  I do hope the doctor ordered more of the pituitary hormones.  I guess we'll find out when all the test results come back.

Creatinine and protein are, typically, done in a standard Basic Metabolic Profile, so there will be a lot of other tests along with those.

If you have a history of kidney stones, I assume calcium is being tested as well.  I see the PTH is normal, but that doesn't mean there isn't a parathyroid issue.

It's a good thing that your doctor is ordering these tests to rule out certain things, but no, it doesn't mean he's "good", particularly as a thyroid doctor.  Many doctors are good at other things, but not as thyroid doctors.  We'll reserve judgement until all the other test results come in and we can start putting things together  AND we see what he's going to do with that TSH of 6...
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Avatar universal
Hi Red,

Thank you for your response. Not all of my tests are in so I will not be talking to the doctor until they are; in the meantime as I see them coming in I have a million questions. As I said, I now see this is not so cut and dry.
As I posted to Barb135 above, my TPO Ab and Thyroglob Ab are within "normal range", although I see they are on the low side? I don't know what any of that means.

Yes, at just 6.35 my symptoms are beyond belief! I had to quit working three years ago and I have been in pain and on the sofa most of the time. If it turns out that hyperthyroidism is my issue and can be treated...I can't tell you how happy I will be to get my life back!

What kind of treatment did you start? And how is it taken, managed, etc.? Also, is it expensive?

Thank you for posting that you were treated with a 6, I was wondering if my number was too low for consideration of tx.  

Thanks,
Faith
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Avatar universal
Barb, Thank you so much for the informative post! Yes, my debilitating symptoms have been going on for three years, but tests have all been normal. I've always had some symptoms, but I was able to get on with my life normally.

These are my other results just posted today. Do they mean it is not Hashimotos? If those are within normal range and it's not Hashimotos, what might be causing the rise in TSH?

Are you saying that finding the right adjustment for medication is very dependent on the results of TPO Ab and Thyroglob Ab? How so (if you have time to explain the connection)?

Am I a candidate for treatment to help me regain my life, and if so, what might that treatment be?

As a sidebar to all of this, since my doctor ordered all of these tests, and more that are coming in (FSH, Vit D and B12, creatine, protein, etc.), am I safe in assuming he might be good and knows what he is doing? I do have kidney issues, history of stones, and those tests are coming in as abnormal. He's trying to see what is causing the stones. I'm also doing a 24 hour urine collection.

Again thanks for all of your help! I am searching and searching for info....

TPO Ab < 0.3 IU/mL (Normal)
Reference Range 0.0-9.0

Thyroglob Ab < 0.9 IU/mL (Normal)
Reference Range 0.0-4.0

Parathyroid hormone (PTH Intact) 43 pg/mL (Normal)
Reference Range15-65
Helpful - 0
1756321 tn?1547095325
My doctor started treatment when my TSH was 6mU/L (I had severe hypothyroid symptoms due to a combination of cellular thyroid resistance and Hashimoto's thyroiditis) but he was perplexed by my severe symptoms with subclinical hypothyroidism on paper.

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