Can someone who had abnormal thyroid test results provide information?

What were the numbers of the TSH?

I don’t know about temporary thyroid problems. I’ve had zero thyroid function for 25 years, starting when I was 17. It’s also my experience that thyroid issues are common—they seem common, at least. Thyroids can be wonky, too, causing TSH levels to go up and down, but this might have more to do with pregnancy. I’m not 100% sure about what causes wonkiness, so don’t quote me.

The process, though, is to test your TSH level, determine whether it’s in range, and then prescribe thyroid replacement hormone. It takes about six to eight weeks of compliance (taking the medicine as prescribed) to smooth your hormones out enough to test them. So (if you’re hypo) expect to do at least a few months of taking medicine and going in once for a follow up blood draw. After that, it’s lather, rinse, repeat.

I’ve also had a long history of not being very compliant with my prescription and (likely as a result) a long history of depression and anxiety. It’s been a tricky and deceptive dynamic for me to wise up to because it has usually been the last thing to cross my mind as the source of the problem. After all, for the longest time feeling cruddy was my “normal.”

I don’t mean to overreach, but it sounds like there’s a worry about the possibility of it being lifelong. I will say that my situation really sucked (in large part because of my reaction to it), but it ultimately helped bring me to a really amazing perspective on life. So if you want to take my word for it, then FWIW it’ll be okay.

Well, we need to know what the result were. ‘wonky’ doesn’t cover it. Was the number below or above what it should be? Additional testing will need to be done because there are several possibilities, but please don’t fret. Help is at hand. They will test for free T3 and T4 and perhaps some antibodies and if they are very thorough they will do an Iodine 131 uptake test which is a very painless test where they inject a tracer isotope into your system and it lights up your thyroid on a scanning machine and they can see how big it is and it if has any nodules or if it is uniformly active (or over active… as I suspect…)

If you have an over active thyroid, I’m your girl. I’ve had one since before 1996… when I was finally diagnosed. I’ll help you best I can. I had a really amazing group of online people to help me when I was first diagnosed. We called ourselves Warriors, not patients.

Let me know your age, sex and location and I’ll help you best I can.

From what the doctor told me (I have Hashimoto’s Disease), hypothyroid, it will be lifelong. Thank God for health insurance.

I had whacked out thyroid numbers 14 years ago, everything returned to normal after 2 years. Hyperthyroid numbers but TSH was high also. Cause was too much seafood especially shrimp. When I was at the Endocrinologist he took my pulse three times and checked my blood pressure twice. My thyroid number should have had my pulse at 100 to 120 beats per minute, mine was 72 with a B/P of 122/76. Totally contrary numbers.

My results were 6.130, and the range they use is 0.450— 4.500, and it was flagged as “high”, so in my case, if I’m diagnosed it would be hypo, no hyper.

I don’t know much at all about this particular issue and it never occurred to me that I might have a thyroid issue. I was tested 3–4 years ago, but it was normal at the time.

yep, that’s hypo.

So is the test I had enough to actually diagnose me with hypothyroidism, or are the additional tests necessary for a diagnosis?

I’m, of course, probably being too anxious, but again: anxiousness is the entire reason I saw my doctor to begin with (I’ve been reluctant for years now, and finally got sick enough of it to do something about it). I just hate not being at all knowledgeable about this.

Your TSH should not be above about 4.5. If it is, it’s “abnormal” which means it’s not working correctly. Now, actually the thresh hold for what’s considered “high” is probably lower. My doctor tries to keep it to around 1.5 or 2.

Just like a diabetic’s sugar level should not be above 200, or it indicates he has diabetes, your TSH should not be above a certain number or it means there’s an issue.

Wow.
If you sat and looked over every well intentioned answers here and then Googled all of the articles about ‘thyroid’ online. You saw some pretty ug-ly pictures, read some horror stories, and capped that off with a medical site that makes absolutely no sense. You have probably by now, crawled into your closet, pulled clothes off their hangers and covered yourself up and stayed there. Don’t Do That!
Stop reading, searching, etc!
You haven’t even started the RX.
Stop.
You are alright.
You’re going to be fine.
In fact, you will feel so much better!
Guaranteed!
No info gathering at this point!
You start by talking to your very smart doctor, and go from there. Ok?
If you are really upset and info helps before the talk- here you go….

Calm down. You are just fine. You are going to be even better.

Thyroid. Funny word. For what looks like a Dogbone biscuit at the base of your throat. This little stinker of a gland controls so many things that your body needs to make it run well and effects so many areas of the body, it’s stunning. No one has health class on it. So it doesn’t get noticed a lot until you’re eyeball to…well, you get the picture. Funny thing- men are tested for it less than women, but they are just as able to have thyroid problems as women.
What it isn’t – it’s not the end of the world!
In fact, you get the thyroid levels steady, and you will feel much better.

So. You have something that needs your attention from now on, but it isn’t a big deal.
You are already ahead of the game!
Again- you are going to be fine.
Stay calm. You’re alright.
You, feeling anxious, went to the doctor. Good job.
You have a really great doctor who listened to you, and was intellegent enough to get blood samples and earmarked some for a thyroid check. Excellent!! !
You went in with one problem, and came out with another situation you didn’t see coming. It is truly not that dire. It will end up you’re feeling as it is no big deal, once you get all the levels in your thyroid to be even and doing for you what it was supposed to be doing from when it went wonky- life gets better.
A lot of sweet jellies told you about levels and tests, etc.
Calm yourself.
There is no ‘one size fits all’ in dealing with this gland. It would be so much easier if it were, but so would winning the lottery…right?

Your doctor got some test results. She is, once again, excellent!!!!
She will prescribe a drug for you. It is called Synthroid. It comes in varying amounts of little tiny tablets. You may, like a number of us, take a generic form of this RX. Keep the RX info, so as you can give other doctors whom you may see, a known brand and doseage. It is important for you to list your thyroid RX at every medical, dental, gynecologist, etc. when you fill out your info sheets for them.
Again. Relax.
This will become quite ordinary for you to do. It really isn’t that big a deal.
To answer your question about lifelong. I would say yes. Most likely so. Welcome to the club! There are a lot of people in this club. See if you can get on a committee! Like dessert-tester. Yum!

Routine RX Routine… :)
You will get up in the AM. On an empty stomach, you will take that little pill every day. You drink a whole glass of water with it. Whole glass of water with it. Whole….didja get that? If you don’t, it won’t get going as fast in your body. And it will make your mouth drrrryyyyyyy. Like the arid Sierra Desert!
Then you don’t eat for ½ an hour. Time enough to take a shower, etc. You stay upright for the pill to get to your stomach.
That’s it. You can have breakfast in bed at that time if you wish.
( if you do take it at another time- generally not recommended – you will have an amount of time, usually 2 hours after last food intake, before your doseage. It really is important to take the RX around the same time every day.)

Every day, around the same time- pill, water, go!
No big deal.

You are going to feel so much better. Less stressed. Better decision-making. To name a couple of perks.
Every 6 weeks you’ll get a blood draw- and the results will help your doctor get a stable doseage amount for you. Once it is set, its usually a blood draw every six months. Yes, from now on. I’ve heard if you fuss at them during the blood draw- you get a sucker. So far, it hasn’t worked for me. I’ll keep trying. :)
It is a good idea to get the Thyroid test AT LEAST once a year. The thyroid gland is, as stated above, a stinker sometimes, and wants it’s doseage changed. It can go up or down. Easy adjustment to RX- and you’re ready to go.
You are fine. You are going to feel so much better, you will not realize until you are on this RX, just how awful you were feeling. Trust me.

You are so very, very lucky. I felt horrible for years. I had taken the same RX for Thyroid many years. I still didn’t feel well. The doctors did tests – which usually are on point. Mine? It read in the OK area, but my thyroid was not working well, and it should have been caught by a number of doctors. That’s why I’m saying what an excellent doctor you have found. If I had had someone like that so many years earlier things would’ve been much better for me.
As it ended up no one diagnosed that my thyroid had changed, and needed much more attention than it was receiving.
If you have ever heard of an Endrocronologist- they are a specialist in thyroid glands and their workings throughout the body (plus the areas which need special attention) For people whose thyroid problems are on a whole different level from where you are. That is when they use ultrasound equipment now to scan the thyroid, and run different tests.
Again, you are no where near this level!
Do you want to know how they found out that my thyroid was not working as it should have been?
Twenty one kidney stones! Yep.
As I said, it sure would’ve helped me to have found a good Doctor who listened to me sooner than the ones I went to!!!!
Ouch!
It wasn’t until addressing these years-long problems that they removed my whole thyroid gland.
I survived Thyroid Cancer.
And do you know what’s funny? My body STILL can’t decide how many MG’s of Synthroid it wants!!!! My doseage now has to cover the thyroid’s absence- plus a notch or two just to be difficult!
Figures!

So you see?
I am so very happy for you!
Everything you are worrying about has put you in the right place, at the right time. Just where you were supposed to be!
You’re going to be fine, Sweetie!
Trust me.
Things are good.
Message any of us Jellies if you need a question answered, or a fear pops up, or you’re stressin’ over it. OK?
We are here.
Take good care
Hugs.

Thanks for all of the stories and advice, everyone. My clinic called me earlier to let me know that my doctor prescribed medication for me that she wants me to start taking as soon as possible. A month from now, she’s going to check my levels again to see if it improved at all. If not, dose might tinkered with and/or additional testing might be done.

If this medicine means I’m finally not tired all the time, among other things, I’m really looking forward to starting it.

@msh You will get up in the AM. On an empty stomach, you will take that little pill every day. You drink a whole glass of water with it. Whole glass of water with it. Whole….didja get that?
A little condescending don’t ya think?

@chyna It’s alright, I think they were just trying to be helpful and make sure that I knew the importance of drinking a full glass. Which, yes, I easily understood… lol But no hard feelings.

I have never heard that a whole glass of water has to be taken with the thyroid medication.

@msh C’mon… no animosity, please. It’s fine.

@jca On the bottle I got today, it says to be sure to drink plenty of water when you take the pill.

I’m glad it turned out that you were hypo and not hyper. Easier.

@cazzie Yeah, my doctor just sent me a message about a half hour ago giving me the official diagnosis. It’s kind of bittersweet. I’m bummed, because I hate the idea of having it for the rest of my life, but it’s good because I know that now I might start to feel significantly better in quite a few ways.

It’s also bizarre, like I mentioned before, because it was completely unexpected. I didn’t go to the doctor with anything like this on my mind, but I guess it’s a good thing I finally decided to ask about help for my anxiety. If I hadn’t, who knows how long it would have been before it was discovered – and I can’t even begin to explain how reluctant I’ve always been about asking for anxiety meds. I got lucky, I guess, before it got extremely out of hand.

I used to have an extremely fast metabolism, too, which also makes it kind of weird. Now I’m dealing with the exact opposite.

Okay, so, I have another question for you guys.

Was your mood affected when you were trying to find the right dose of hormones? If so, in what ways?

I’m very happy your doctor thought to test your thyroid. She needs to do a larger panel. Just TSH is not enough information in your case. They should test your T4free and T3 (usually total T3, but sometimes they measure a different T3 also). Usually a high TSH means low T3 and T4, but you can be atypical and it matters. All follow up tests they should do all three for the next few tests in my opinion.

Thyroid issues absolutely affect mood. When I worked at a psych hospital all patients being admitted had to have a mandatory thyroid test. Hypothyroid usually displays itself as depression, lethargy, and lack of motivation, but many people get anxiety secondary to depression.

Hyperthyroid usually involves anxiety and manic types behavior. I don’t mean most people who are hyper are in a manic state, I just mean in terms of mood changes your more likely to see too much energy so to speak in the hyperthyroid patient, and not enough with the hypo.

Fixing this underlying problem of your thyroid should fix a lot of things for you.

What dose drugs were you started on and what drug?

I started the meds today (and can’t seem to feel full after eating – and actively feel hungry. Is that normal?). They’re L-Thyroxine 50mcg. She said she started me really low, and I did message her about the blood tests for T3 and T4 because I’ve seen in quite a few places that testing them matters when you get an abnormal thyroid result, so hopefully she gets back to me soon. Might not hear anything back until Monday.

Starting to get overwhelmed with all of the information. I know it’s within my right to ask to be referred to an endocrinologist, but do you think it would come across as rude if I asked?

I’m a little concerned the medicine was prescribed to me with only one TSH test, especially because my numbers weren’t very high over the normal threshold.

How many of you were diagnosed with just one single TSH test? Should I ask to be sent to an endocrinologist?

You’ll want an endocriniologist over the long term, but they will pretty much go by the same results. 50 mcg isn’t a lot—it’s an “assist” for an underproducing thyroid. With no function, I was taking 200 mcg until recently when I was cut back to 150 mcg. (You need less as you age.)

It sounds to me like you’re getting the right care. You had anxiety and the blood work shows a deficiency for a gland in your body that is second in command only to the pituitary gland. Give it six to eight weeks, then you’ll have two tests and then you can decide whether it’s a valid diagnosis.

@kevbo Thank you for answering, because I’m way too anxious about it again. Paranoid that, with only one TSH test, I’m ruining my thyroid in the opposite direction. Lol Ugh. Anxiety sucks. :-/

So, if I do want an endocrinologist in the long run, should I ask her to refer me now, or just wait for the second blood test to be done? Because I really would, regardless of anything else, like a specialist to handle this problem since they’re the most knowledgeable about it. I didn’t want to ask now for fear that it might come across as if I think she’s incompetent (definitely don’t).

Also: My medication insert says to contact my doctor (I’ve sent a message already) if I experience extreme hunger because ”...it could be a very bad side effect” (literal words). All day, even right after eating, I’ve experienced a gnawing hunger like what happens when you’ve gone way too long without eating, almost like your stomach is eating itself. So now I’m worried about that. My clinic isn’t open on the weekend and it’s too late to call now, so I have no idea if I should continue taking the medication or not.

No idea about the hunger—actually let me know what you find out about that. If your health plan or state has a nurse advice line, call that. Otherwise, you may want to call urgent care, or you can just stop taking the medicine until Monday.

I’m pretty confident the medicine can’t ruin your thyroid. It doesn’t affect your thyroid directly at all. What it does is give you the hormone that the thyroid produces. When the pituitary gets word that you have enough hormone in your body it stops hammering the thyroid with a message to make more. That’s what TSH is: thyroid stimulating hormone.

As far as the endocrinologist goes, I think just wait. This is a marathon and not a sprint, so it’s not going to make a big difference one way or the other over the next six to eight weeks.

Not to be dramatic, but I stopped taking mine completely for a few months only a couple of years ago. I didn’t want to take it anymore. What happened is that I started puffing up and looking like shit. Then somebody dragged me in to the doctor, and I started taking it again. My only point in telling you this is to say that for you it’s just going to be the difference between feeling relatively healthy and relatively crappy, and it will take a few months to fine tune things to where you’re feeling relatively healthy. You’ll live through it either way (unless the hunger issue is something dangerous, which I know nothing about), but you’ll suffer more on one path versus the other.

Ask for the referral at your follow up appointment.

@kevbo Thank you for taking the time to answer my questions. I’m really appreciative of everyone who’s helping me out.

Someone else who has thyroid issues told me that being hungry after immediately starting the medicine is normal, since it’s waking up my metabolism again. Just to be safe, I messaged my doctor since that was listed under a potentially very serious side effect, so I’ll let you know what she says about it when she gets back to me. Hopefully it is just because my body is adjusting, though.

You’re welcome. Post about the hunger issue when you get a chance.

It’s overwhelming. A lot of what you are reading will fall into place as you deal with it, don’t feel like you have to understand everything now.

Are you taking Synthroid? I think 50 mcg is an ok place to start in my opinion. I still would like if you would test again sooner than 6 weeks. When did your doctor tell you to come back to be tested? If you want a second test you can still do it now with the T3 and T4. Don’t feel like because you took a few days of pills you can’t. It takes a few weeks of meds for numbers to significantly move. I insisted on a second test before I started my medication. Most likely your lab test was correct, but I have had inaccurate labs in my lifetime.

GP’s are too often not so great at treating thyroid issues, but yours gets credit for finding the problem. You can take the Synthroid and get the extra blood tests and see how you do. If everything normalizes and you feel better then you might not need a specialist. You can always go to an endocrinologist later. If you do, bring your lab work with you. In fact, get a copy of your lab work after every blood test and keep it yourself. If your tests are done at Quest labs you can get their app and see it on your phone and it will even graph out your results over time. I assume other labs have similar apps.

I agree with @JLeslie: get a copy of each blood work result and look at it yourself. It will help you understand what’s going on and it will give you a visual to use when asking questions. There may be things the doctor overlooks and there may be things you don’t understand, and so by asking, you’ll learn. Keep the printouts and you can use them to reference in the future, if you want to.

I had the best endocrinologist who has since retired. He said it take about six weeks for the medication to get the TSH to where it’s going to be with that dose, so six weeks is appropriate. Other things will affect the amount of TSH you’ll need, for example if you gain or lose weight, the dose may need to be adjusted.

The tsh is slower to change than the t3 and t4. They should start picking back up I a few weeks and your energy might improve sooner. Most docs are told to only rely on the tsh numbers but we patients tend to go by the T’s because it reflects more on our feeling of wellness.

Woops, in my post above, in my last sentence, what I meant to say was “Other things will affect the amount of medication you’ll need” not ” the amount of TSH you’ll need.”

I agree that the meds need 6–8 weeks to see an accurate measurement of where your TSH, T3 and T4 will stabilize too, but again, what I’m afraid of is you becoming overmedicated. If your TSH is already low or your T3 and T4 is already high, you can adjust down your meds and start the 6 week count over from that point. In other words if your TSH gets down to .4 by week 4, you know you are over medicated, no need to stay on that dose of meds and feel like crap two more weeks before lowering your dose.

The other option to just go with the 6 weeks, but if you get symptomatic, go get a blood test. If you start to feel dizzy, rapid heart beat, hot, trouble sleeping, ravenous, those could be indications your over medicated.

Thank you to all of you, all of this is appreciated. I asked my doctor additional questions, brought up tests for T3, T4, etc. But I probably won’t hear anything until Monday.

Thankfully, the gnawing hunger isn’t nearly as bad so far today, but I did mention it to her since the medication insert said to.

@JLeslie She put me on L-Thyroxidine 50mcg.

How long have you been taking the thyroid meds?

@JLeslie Today is the second day.

You wouldn’t likely feel any difference the first few days. At 2–3 weeks you might start to notice a difference in your energy level, since that’s one symptom you have. I’m excited for you. Having a thyroid problem sucks, but having better thyroid numbers is such a great thing, even if you have to do it with medication.

@JLeslie No, I know all of the other stuff won’t improve for a while yet. So I think for now I’m just going to stay on it. But the gnawing hunger yesterday, which couldn’t have been a coincidence, sucked really badly. But, like I said, it calmed down somewhat today, thankfully.

And yeah, I’m glad that something was finally figured out, too. However, I’m dizzy frequently and have been for a long time, so I won’t be able to rely on that as a potential side effect of something. But I’ll pay attention to my body in general and work with my doctor if anything comes up.

Was your blood pressure high when you were at your doctor’s? Higher than your normal?

@JLeslie No, I always have really low blood pressure. Well, it was slightly higher than my normal, but I was nervous about bringing up my anxiety, and I was also in some physical pain at the time.

@DrasticDreamer: Some people never experience many of the symptoms. I was very overweight when my thyroid was at its slowest, (TSH was the highest – coincidence? probably not). The doctor used to ask about my energy level. It was fine, to me, but then I used to tell him I had nothing to compare it to. What should the energy level of a very overweight person be? If it was low, it would be appropriate for a person carrying around a lot of weight to not want to walk much or go up steps or whatever. I also was never constipated or depressed. I did have dry skin. Ironically, when I used to go to the dermatologist, he’d never ask if I had a thyroid test done. It was assumed, I guess, that all other options had been explored. The dry skin treatment was actually a “band aid solution” since it was not getting at the root cause.

I agree with @jca that everyone has different symptoms, a and a lot of people don’t have symptoms, and a lot of people don’t think they have symptoms until they get their thyroid into the normal range. Similar to @jca I’m annoyed an eye doctor I saw didn’t bother to test my TSH when I complained of very dry eyes. Although, I will say my cardiologist did check my TSH (so I have no idea what the other numbers might have been at the time) and it was in normal range, but a couple of years later when my thyroid really went whackado the first thing that felt so much better for me taking thyroid meds was my heart and feeling like I could get enough oxygen again. Even when my TSH was only down to 6 (still high) my heart related stuff was so much better.

However, my dry skin, eyes, feeling lethargic, sleeping 10 hours a day, higher blood pressure, and hair falling out starts when I’m around 4.5. So my TSH can be 4.5 or 20 and I have very very similar symptoms. It’s not until I’m well into the normal range that I’m feeling normal.

I definitely have a lot of the symptoms and have for a while, but I had no idea that it might be my thyroid. I really wish a doctor had thought of it sooner. I don’t know if it’s psychosomatic – because I know these meds (both the L-Thyroxidine and Zoloft) are supposed take weeks to kick in – but I already feel like my breathing is different/better, and my chest doesn’t feel as tight, either. Which I’m loving, because I hated dealing with that on a daily basis. But, again, I have no idea if it’s even possible for the meds to start working after three days.

I took Prozak for a couple of weeks years ago (it’s the same class drug as Zoloft, an SSRI) and I felt terrible right away. A girlfriend of mine felt like Prozak made her the most normal she had been in ten years, and knew it within days of starting. My point is I think those drugs can have very fast effects and side effects, even though they say it takes 5–6 weeks to see a total effect.

It wouldn’t surprise me if you feel the effect of the thyroid meds within a very short time, less than two weeks, because your TSH is so close to normal. You will probably move into normal range quickly. That’s what I’m afraid of in all my warnings above.

Did the doctor say she will run a full panel next time? Will she let you test early?

@JLeslie I haven’t heard back from her yet, and probably won’t until at least tomorrow. However, she’s really good about listening and doing tests (even on her own, without asking – like she did for my thyroid) simply to rule things out, and I don’t think she’d have a problem with checking my T3 and T4 at all. I’ll let you know what she says when she gets back to me.

My blood pressure is never affected. I’m like a rock that way. Right now, I’m over-medicated and have no energy. (remember, I’m hyper, so when I’m over medicated, it means my levels are low and probably hypo) So, I’m really tired, putting on weight and my hair is getting disgustingly thin and my skin is itchy. Feeling like a real prize these days. blurg.

I have to say I’m shocked I’ve never suggested you get your thyroid checked. Maybe you haven’t written much about your medical and psych concerns. I suggest it to almost everyone with depression or anxiety. I’m always slammed by a few specific jellies about how I bring up thyroid, and some other tests, but your diagnosis just reinforces why I do it.

The other four tests I think you should request are:

Vitamin D,
Vitamin B12.,
Iron,
and a CBC.

Most likely they already ran the CBC and iron, so you wouldn’t need that again, but the D and B12 are less likely to have been tested. Do you let yourself tan? If not I’d bet you’re D deficient. When my D is low I really feel it in my muscles, which can add to the feeling of needing rest. Low iron really has a big affect too for overall feeling of strength and energy, but it would be so incompetent not to test a woman with your symptoms for iron, or at minimum run a CBC, which shows red blood cell info, that I highly doubt that wasn’t tested. But, you never know.

I know so many women with hypothyroid, below normal D and lowish B12 it’s incredible.

I had to search. I mentioned thyroid testing in one of my answers here I didn’t even remember you had asked that question. I said it in the middle of so much other stuff so briefly I’m sure it was easily missed and you were focused on the vitamin D so it’s understandable. Plus, so much info being thrown at you, it’s overwhelming.

Have you been taking the D? Is your number above 40? Do you feel a difference?

Edit: I just read through that other Q in it’s entirety and it looks like your thyroid was tested at the time. I think possibly a lot of women who become hypothyroid bounce in and out of normal for months and sometimes years. Maybe especially the TSH number? I wonder about it.

Typo: its not it’s.

@JLeslie I don’t know why you insist that letting your skin tan is an indication that you are getting enough vitamin D. The UV-B light responsible for vit D production in your body isn’t part of the spectrum of light that tans your skin much at all. That is why the lamps used in tanning salons give off UV-A and don’t help the body with production of vit D. I wouldn’t encourage anyone to tan their skin.

15 minutes outside a day is plenty, (is that difficult for people in America?) as well as eating eggs (with the yolk) fish like salmon, trout, mackerel and tuna (even canned tuna or sardines).

Our research into vitamin D in Norway is essential. We don’t have the option of sitting outside in the sun for a few months of the year, so we supplement our diets and even take tran, (cod liver oil). It doesn’t take much, but without it, the effects are sad. Remember, I work with children during their developing years. When a child doesn’t start to walk when they are supposed to, or when we see bowed legs, we know what’s happened, and it is so sad and so preventable and thankfully very very rare these days.

If your body is having trouble making vit D, it may have more to do with the lack of phosphate in the food you eat. You can actually give yourself a phosphate imbalance if you take too much vit D supplement and overtax your kidneys. Have you ever had that checked, @JLeslie?

My D is still only 26.6. I’m having a lot of difficulty raising it to the lowest acceptable number (which is 30, according to their tests), but I am still taking it every day at 2,000 units, per instructions from my doctor. I live in Portland, Oregon, where it typically rains 9 months of the year, so I’m sure that has something to do with it.

I do eat eggs, but not every day. Same with salmon and tuna, but probably not enough.

Here is some info on the phosphorus levels and how they test for it. http://www.healthline.com/health/serum-phosphorus#AbnormalResults6

@cazzie Sorry such a long answer:

Leaving out people who use sun lamps of some sort (most people don’t) if you have no tan, I don’t care what color your natural skin color is, you likely are not getting enough D. Everything I have read says UVB is what helps us produce vitamin D. It doesn’t matter if it’s UVA or UVB though, most of our suntan lotions have some protection for both, and clothing blocks both, and so a tan is an indication someone is getting rays from the sun. Having a suntan does not ensure the person gets enough D, but someone as pale as me, without D supplementation, it’s a great bet that person is deficient.

My husband has been “whiter” than ever the last year. That basically means his butt, which never sees the sun, is almost the same color as the rest of him, and for the first time he is low in D. He’s not tested often, but I told him to ask the doc to test for it his last check up, and the doc had already listed it on the bloodwork, so I was glad about that. His number was borderline, 30, usually he is around 50, and for the first time he is having some minor muscle and tendon trouble showing itself as plantars fasciitis. It might be unrelated, but it’s interesting. His problem is nothing like my all over problem. He takes a daily multi for many years now, which most likely has some as, I have not checked it, but my assumption it has at least around 400 IU’s.

Each individual can also have other factors for being low in D, I would never argue that. I have never guessed wrong about D when I see someone and guess they are deficient, because if I see them and they obviously get no exposure to the sun, it’s a pretty easy guess. Where you live the population probably is more likely to eat foods high in D, which might make the stats there different than here.

I did my own experiment, which doesn’t count for much, except for myself, and 15–20 minutes in the sun daily did not give me enough D. It was not daily my whole body, but 2–3 times a week it was in a bathing suit, and other days arms, and sometimes legs. Tried it for several weeks while still taking minimal D in supplements. I was still deficient.

I don’t like taking so much D. I don’t like taking anything at all. I take less D than would probably make me feel better. When my blood serum levels are at 70 I feel incredible.

In the past I was afraid I might have too many phosphates in my diet, because I drank coca cola like an addict back then. Is that the same thing your article is referring to?

The link says too much D can cause high phosphorous blood levels, but the symptoms described are about low phosphorous. Or, did I interpret the information incorrectly? I have my calcium checked about every 3 months, it’s always a very good number. I don’t think I have ever had a phosphorous test, which would be interesting.

@DrasticDreamer What are you waiting for? Why not at least double your D dose?

@JLeslie 4000 is the absolute maximum amount that should be given to anyone over the age of 8 years old and if she was prescribed 2000 by her doctor, I find it rather inappropriate for you to suggest she change the dosage.

@DrasticDreamer try to get outside for 15 minutes when the sun is shining. Your body will do the rest.

@kevbo I heard back from her today, but she forgot to address that part of it, so I don’t know why the pamphlet lists it as a serious side effect if it’s consistent. It stopped for me after the first day, though, so I’m assuming it literally just was waking my metabolism up again.

@JLeslie Because I’ve been taking D in high doses so consistently, my doctor wants me at 2000 simply because it’s safer than risking some of the D poisoning that can happen at high levels if you take it for too long. After this summer, I tried to spend 15–20 minutes outside every day with as much skin exposed as possible, but it didn’t seem to boost me a ton. I am up from where I was in the beginning, which was around 21, I think, and the highest I’ve ever reached is 27. So, with the right food, D3 supplements and trying to be in the sun for a while whenever it’s out, I seem to be making a slow, but steady climb upward.

She also said that it would be fine if I want to test T3 and T4 at my follow-up in a month, but that for now, because I was only mildly hypo, it should be okay. She did say that I could retest sooner than a month if I started feeling bad or if I really wanted to, but for now, I think I’m just going to stick with the follow-up in a month.

@cazzie Doctor’s all over America are prescribing much more. The 50,000 IU of D2 script once a week is prescribed all the time. I’ve even heard of it being prescribed twice a week, but I only know of that with one person. If not the 50k script then many doctors are suggesting 6,000 to 8,000 IU’s D3 OTC daily. D poisoning is extremely rare and difficult to induce in studies I’ve read. I realize you are not specifically talking about D overdose, but other concerns also.

Just the fact that the OP can’t get her D up to normal at her dose plus 15 minutes of sun, like almost everyone I know with low D, demonstrates why doctors are suggesting higher doses. I’m not a doctor, she certainly doesn’t have to do what I say. I only asked her why, and she told me why. I’m fine with that. I don’t know why you aren’t?

I didn’t take the higher doses at first either that my doctor suggested, I don’t like to pop pills, so I resisted. Eventually, the doctor convinced me to give it a try. Even when I took the 50k, once I got my numbers up, I talked to my doctor about stopping it and using 2k OTC a day as a maintenance dose now that I had my number at around 50. Within a few months of that I was in her office practically in tears from the muscle pain returning. I thought it would wind up my thyroid was out of line, but what tested low was the D. Dropped back to low 20’s. I started the big dose again and that’s when I realized (or finally accepted) most of my pain was from D deficiency. My doctor says she sees it all the time. That’s my personal experience, not advice, nobody has to do what I chose to do.

One of the regrets of my youth is tanning as much as I did. If I had done less then I would feel comfortable doing more now, and I would much rather get the D naturally. When I spent hours in the sun for a few days a week for a few weeks during a vacation my D was at 70 and I felt the best I had in a long time. I reduced my vitamin D intake when I got that number back, but eventually had to increase it again a few months later. I try to keep mine between 40 and 50. My friend who is a nurse tries to keep hers at 70.

You’re not a doctor either by the way. I don’t suggest things or state things will nilly. Maybe the standard of care for D is different in the US than where you live? Even in the US some doctors are on the D bandwagon and some aren’t.

Doctors who prescribe the higher amount here are more and more convinced. Doctors who prescribe/suggest the lower amount, basically what the OP’s dose is or less, tend to be less convinced of how significant the D helps, because those doctors don’t see the improvement in symptoms, because their patents still aren’t a good bit into the normal range. Some patients don’t see big difference with taking the D, I’m not saying it happens for everyone, like any med, but just on a non-scientific level the number of people I know is hard to ignore They are getting lab work done, they aren’t just popping pills. However, it might wind up the higher dose was a bad idea long term, who knows, it’s just been being done en mass the last 10 years or so here from what I can tell. Probably, better eating habits, and especially more sun exposure, would be better than pills. But, the sun exposure can cause wrinkles and cancer. You can’t win.

You didn’t explain the phosphorous to me. What exactly is your concern there? I’m a little confused and I am interested.

@DrasticDreamer Sounds like the doctor is willing to work with you and address your concerns. Keep us updated. I hope you begin to feel better soon.

Here is a link I found from the Vitamin D council.

If you look around the site you will see some info on what we all have been discussing. A few things I found interesting:

1. It shows on a table the different doses recommended, or upper limits, by different specialties.

2. It warned hyperthyroid people should be careful not to take to much D.

3. It talked about the concern regarding high calcium, which as I mentioned, I take very seriously and am regularly tested.

4. This link also says it’s the UVB rays that give you the D.

5. It talks about doses typically needed for overdose and the symptoms.

My point is YOU are not HER doctor. And I’ll listen to the advice from the Mayo Clinic before a website that sells things.

@cazzie Because doctors are never wrong.

When did I ever say she should replace her doctor’s recommendation with my information about my experience, and what my doctor prescribes? I didn’t. I’m totally fine with the OP’s answer. She should do what she is comfortable with at her own pace. I went at my own pace.

I’m going to assume you won’t acknowledge the misinformation about UVB, unless you can show information backing up what you said and I am wrong (which is a shame, because I think jellies look to you for scientific information and research) and you aren’t answering my question about phosphorous and vitamin D, which you brought up, I didn’t understand well, and would like to know about it.

I agree that a website that sells things is suspect, but the websites seems to give accurate information about the different schools of thought and actual recommendation by the government, organizations, and different doctor specialities. The studies they cite, many are too small to be valid, but they are still interesting. The site admits there are different schools of thought and conflicting studies.

I’ve looked at pubmed studies and Jama articles in the past and many talk about the importance of adequate vitamin D levels above 30, and sometimes suggest a dosage above 2k is fine, I’ve seen 4k and 5k recommended in such articles and then they usually go back to the 2k recommendation by the end of the article. The problem
is; if the medical establishment agrees a low D level is a health problem, and their recommended supplement dose does not raise the pt’s blood serum adequately, then what? This is the dilemma. No one I know who stays out of the sun, who tested below 20 for D, has gone up to normal ranges just taking 2,000 daily. Maybe if they took it for a year it would eventually go high enough? I don’t know. I know within 2–6 months it didn’t work for anyone I know. Do you know people who have accomplished normal
levels on 2k daily who started out so low? How long did it take? If lots of people are like me, think about it, doses at 50k a week, or 6k-8k a day, and they don’t go up to over 100 and beyond. They hover right in the 40–80 from what I have heard and observed.

This is why studies are being done about D. Current thinking is being questioned. I hope the continue to do studies to evaluate risks of low D and risks of high dose supplementation.