s/o optimal thyroid test result numbers - worried

[IfIOnly]

Due to the thread here recently about optimal thyroid test numbers versus simply adequate, I pulled out a test done several years ago to check. The problem I'm having is finding which site was recommended to check them with. I randomly searched and according to one website, my numbers were pretty low. I'm trying not to freak out, but I'm kind of worried now. Can anyone help me with a reliable source? My test  in 2010 showed:

 

TSH 0.66 (0.34-5.60 range)

Free T4 0.88 (0.58-1.64)

Free T3 2.4 L (2.5-3.9)

 

Even on the reference range on the test these seem kind of low.  :crying:  I do not take any thyroid medicine or anything.

 

 

Edited April 9, 2017 by ifIonlyhadabrain

[Catwoman]

You had the test so long ago that I wouldn't worry about it at all. If you're concerned, your doctor can order a simple blood test for you. Have you had a physical where your doctor felt your thyroid for abnormalities? That's quick and painless, too.

 

Do you have any symptoms that might lead you to wonder if something might be wrong, or did you just get curious after reading the thread here?

[IfIOnly]

You had the test so long ago that I wouldn't worry about it at all. If you're concerned, your doctor can order a simple blood test for you. Have you had a physical where your doctor felt your thyroid for abnormalities? That's quick and painless, too.

 

Do you have any symptoms that might lead you to wonder if something might be wrong, or did you just get curious after reading the thread here?

Yes, I do have pretty severe mental confusion and forgetfulness and, after looking online, other low thyroid symptoms. I've been to a bunch of doctors and while I've gotten pieces of the puzzle via testing, I feel worse each year.

[Catwoman]

That's awful. :(

 

Could you go to a specialist who could get to the bottom of this and figure out what's going on? It's scary to have symptoms and not know what's causing them. It's hard not to jump to the worst possible conclusion even when you know it's probably going to end up being something that's not a big deal.

[Pawz4me]

I wouldn't worry about years' old numbers. Thyroid hormones can fluctuate a lot. I'm hypothyroid (well medicated) and have to go for blood work every six months. The numbers can change significantly that quickly. What you have is just one snapshot. Unless you have a lot of data to compare, one set of numbers from years ago really tells you nothing.

 

No doubt I'm risking getting cyber tomatoes thrown at me, but I don't trust Stop the Thyroid Madness and similar sites. There's maybe a very small bit of good info there, but a lot of it (IMO) is sheer hysteria. That's not to say most doctors do a very good job of caring for thyroid patients. But I don't see the point in going nutso in the other direction (which it seems to me that site and others like it do).

 

That said, I do think most doctors tend to take hyperthyroidism more seriously than they take hypothyroidism.

 

If you're not feeling well then certainly push for answers. Hard if you have to. But I don't think you'd help yourself zeroing in on one thing that may not even be the cause of your issues.

 

Good luck!

[kroe1]

If someone looks online at a symptom checker, he will immediately become fearful of all kinds of diseases. Next time you go to the doctor, just take your results, a written list of current symptoms, and see if you need any rechecking. If it hasn't killed you in 7 years, you are probably fine.

[gardenmom5]

different tests can have different ranges.  you really need to know the range that came with your test.

 

that said - 2010 was seven years ago.  you would need something far more recent.   even within a six month window they can change a lot.

 

stopthethyroidmadness.com is generally one of the best sites out there for information.   they have several facebook groups under "for thyroid patients only" ftpo - then their more specialized name.  e.g. adrenals, children, t3, s3x hormones, etc.

 

eta: I've also dealt with drs who made me come in every three months for testing once I was stable (money maker for the dr), and refuse to do the tests I asked for, as well as left me so unmedicated I felt like carp.  now I have one where things are much more functional.  and the proof is in the pudding of how well you feel and function.

Edited April 9, 2017 by gardenmom5

[OneStepAtATime]

:grouphug: 

 

Sorry you are stressing out.  Honestly those numbers mean nothing, though.  Zilch.  They are too old.  I have a thyroid condition and as others have said things can change on a dime.  If you are having health issues, get a new panel run.  See if anything seems off.  If so, get your GP to refer you to a specialist to run further tests.  Worrying based on 7 year old data is not going to help you at all or answer any questions.  Truly, you need recent info.

[Spy Car]

Yes, I do have pretty severe mental confusion and forgetfulness and, after looking online, other low thyroid symptoms. I've been to a bunch of doctors and while I've gotten pieces of the puzzle via testing, I feel worse each year.

I'm too new to thyroid issues to say anything definitive about these results, however in my non-expert eyes (and combined with the symptoms you are feeling) the numbers look like follow ups are warranted to check on possible hypothyroidism.

 

To have "optimal" FT4 levels, most people (from my understanding) feel best is they are somewhere between half to three-quarters of range. You are below that. That puts you in the sort of "normal range" that can result in your feeling lousy and leave you untreated.

 

I'm less familiar with the FT3 results as my very traditionalist (some might say backward) Endocronologist refuses to run this test. But your results are below range.

 

TSH you want to be low. I don't think your levels would set off alam bells.

 

My guess is that you are somewhat hypothyroid. Again, my level of expertise is low. I suspect many doctors would look at these numbers and surmise that you are fine.

 

If I had accepted "fine" or "normal" in my case, I'd have remained flattened. You know if something isn't right. I'd look for a good physician and re-test.

 

I also did something called the Barnes Basal Temperature test at home. It involve taking your waking armpit temperature with a mercury thermometer, plus additional temps in increments of time. Goggle it.

 

My Endocrinologist scoffed when I mentioned the Barnes test showed I was clearly hypothyroid (he's a TSH guy), but the Barnes test was once the gold standard of diagnosis and some say is still the best method to measure symptoms. Couldn't hurt.

 

Best wishes on this journey. I hope more knowlageable people (including doctors) can help you. I also know form my case ( and hearing about the experiences of others) that the need for self-advocacy can be pretty high sometimes.

 

Best,

 

Bill

Edited April 9, 2017 by Spy Car

[City Mouse]

I agree that results that are 7 years old are not worth you attention (stress or worry). If you are concerned, have testing done again. You can worry about the current results if you need or want. My doctor has me retest every year before renewing my prescription.

(Not trying to make light of your concern, but so much can change in 7 years that those results are meaningless now.)

[IfIOnly]

If someone looks online at a symptom checker, he will immediately become fearful of all kinds of diseases. Next time you go to the doctor, just take your results, a written list of current symptoms, and see if you need any rechecking. If it hasn't killed you in 7 years, you are probably fine.

 

I know you are trying to help, but ouch. This stung. I'm not dead, but I am very sick and very much not fine. I forget people names who I know well and get lost within my city now. Quality of life means something too. May or may not be thyroid related, but I agree, I do need a current test.

[IfIOnly]

I appreciate the advocacy encouragement. I have tried to get an endo referral from my GP with no success. I've been wanting to switch my primary in hopes of getting that referral, but I'm just tired from trying and needed a break. Maybe I'm feeling strong enough to try again.

 

Thank you.

[OneStepAtATime]

Huge hugs.

[Jean in Newcastle]

It sounds like you need an appointment based on your symptoms. I would have new labs done that include but are not limited to thyroid. I would include vitamin D, basic metabolic panel. Do you have trouble sleeping? I might include a sleep study because apnea could contribute to symptoms like yours.

 

 

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[Catwoman]

I appreciate the advocacy encouragement. I have tried to get an endo referral from my GP with no success. I've been wanting to switch my primary in hopes of getting that referral, but I'm just tired from trying and needed a break. Maybe I'm feeling strong enough to try again.

 

Thank you.

This may sound like overkill, but can you go to the ER the next time you have symptoms and get them to run the tests for you and/or give you a referral you to an endocrinologist?

 

I don't know how your health insurance works, so I don't know if you could do that. I also don't know if your local hospital is any good.

 

Also, are you near anyplace like the Mayo Clinic? They are amazing when it comes to diagnosing unusual symptoms and basically what they did it's my dh (and also two of our friends who had recommended we go there when my dh first got sick) is tell you to plan to be there for a week, and then they schedule you for a huge battery of tests and consultations with different doctors. They keep you going all day, but the place is run like clockwork and they are very organized. Then once they get all of your test results, the doctors consult with each other to figure out what's wrong with you and they come up with a treatment plan.

[Jean in Newcastle]

I would not do the ER for three reasons.

 

1. It's not what ERa are designed for. ER doctors and staff are trained to treat acute problems, not chronic ones.

 

2.. It takes resources away from people who need the ER for true emergencies.

 

3.. It is expensive for everyone even if you have good insurance. This is the type of thing that drives up insurance costs for all of us.

 

 

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[IfIOnly]

It sounds like you need an appointment based on your symptoms. I would have new labs done that include but are not limited to thyroid. I would include vitamin D, basic metabolic panel. Do you have trouble sleeping? I might include a sleep study because apnea could contribute to symptoms like yours.

 

 

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I try to switch providers this week and ask about these when I can make an appointment in May. If switching, you're not able to be seen by the new GP until the next month. I've had a sleep study done. They didn't find anything unusual, but no I don't sleep well and am taking ambien, benadryl, and melatonin only to wake up feeling groggy from the meds and exhausted. I'm not sure if the exhaustion is from other things or if my sleep isn't deep and refreshing. 

[IfIOnly]

This may sound like overkill, but can you go to the ER the next time you have symptoms and get them to run the tests for you and/or give you a referral you to an endocrinologist?

 

I don't know how your health insurance works, so I don't know if you could do that. I also don't know if your local hospital is any good.

 

Also, are you near anyplace like the Mayo Clinic? They are amazing when it comes to diagnosing unusual symptoms and basically what they did it's my dh (and also two of our friends who had recommended we go there when my dh first got sick) is tell you to plan to be there for a week, and then they schedule you for a huge battery of tests and consultations with different doctors. They keep you going all day, but the place is run like clockwork and they are very organized. Then once they get all of your test results, the doctors consult with each other to figure out what's wrong with you and they come up with a treatment plan.

 

So tempting. Thank you. I think I don't get the attention I need because I can take a lot. If I'm finally complaining, it's a big deal, but even then I'm not convincing enough or something. I'm just grasping at straws, honestly. I'm also not one to demand but request. 

 

I also think it's a combo of yes, I'm probably one of the people that should go to the Mayo clinic or something because I've stumped regular MDs. Not going to happen though. I can't even get a referral to an endo. 

 

Our insurance is state medical but we cash pay everything. I also go to the cheapest provider/clinic possible to be able to self pay.  The only insurance to us that is in our price range is medical cost sharing, but only one takes preexisting conditions and even then it's a year wait for only some coverage. 

[Catwoman]

I try to switch providers this week and ask about these when I can make an appointment in May. If switching, you're not able to be seen by the new GP until the next month. I've had a sleep study done. They didn't find anything unusual, but no I don't sleep well and am taking ambien, benadryl, and melatonin only to wake up feeling groggy from the meds and exhausted. I'm not sure if the exhaustion is from other things or if my sleep isn't deep and refreshing.

Ambien can cause all sorts of crazy side effects, even hours and hours after you wake up. Is there anything else you can take instead of that?

 

I only took Ambien once, and the next day I felt fine. That night, we went out to dinner and I said I would drive home afterward. We were driving along a road I travel almost every day and there wasn't another car ahead of me, and all of a sudden my dh yelled, "STOP!" so I slammed on the brakes, and the car stopped just in time to avoid hitting a line of cars that had stopped in front of me. I swear to you, I had been looking at an empty road. It was so scary to realize that even though I thought I was fine from the Ambien, I really wasn't.

 

So that's why I'm wondering if the Ambien might be affecting you more than you think.

 

I'm not saying it's the only thing that is going on, and I absolutely think you need a new doctor, but in the meantime, maybe you could try to find a substitute for the Ambien and see if it helps you at all.

 

I know I could be totally off-base with this and I'm sure most of the people who take Ambien are fine, but my own experience really scared me and I never have reactions like that, so that's why I thought I'd mention it.

[Laurie4b]

I appreciate the advocacy encouragement. I have tried to get an endo referral from my GP with no success. I've been wanting to switch my primary in hopes of getting that referral, but I'm just tired from trying and needed a break. Maybe I'm feeling strong enough to try again.

 

Thank you.

 

You can order tests yourself without a doctor. I think the site Stop the Thyroid Madness has a list of tests that are suggested as well as providers who will draw the blood and send it off for testing without a doctor's orders. 

 

I would be concerned with your memory issues as well: getting lost in places you know and forgetting names of people you know are not normal memory loss. I would call your doctor as soon as possible about those, If he or she is not responsive, get a new gp asap or go to urgent care.

 

Thyroid can cause those issues. The sooner you get it addressed, the better.

 

Additionally, you want to make sure that you are not taking any prescription or OTC medication that is anticholinergic. It is well documented in the medical literature, but unfortunately not well known outside of gerontology that many common drugs can cause or exacerbate memory issues. These include OTC drugs like Benadryl and others in its class, stomach acid reducers, some classes of antidepressants, many drugs for anxiety, and drugs to control overactive bladder. Here is a pretty good list: https://www.theseniorlist.com/list-of-anticholinergic-drugs/

I had no idea what anticholinergic drugs were until I went to a family support group for people with cognitive issues and we were told about them. My loved one was on 5, most prescribed by a physician. 

 

In the meantime, I would suggest regular physical aerobic exercise if you are not doing that. It's the best thing you can do for cognitive issues. Additionally, a diet high in leafy greens, blueberries, nuts, olive oil, Omega 3 fish and low in processed foods, sugar, red meat. 

Edited April 9, 2017 by Laurie4b

[Spy Car]

I appreciate the advocacy encouragement. I have tried to get an endo referral from my GP with no success. I've been wanting to switch my primary in hopes of getting that referral, but I'm just tired from trying and needed a break. Maybe I'm feeling strong enough to try again.

 

Thank you.

 

My Internist said nothing about my thyroid numbers after I had them checked (after complaining of fatigue).

 

The Endocrinologist I saw told me my results were "normal." "Normal for whom?" I asked?

 

When pressed to treat me he said "I guess it's not unsafe, OK"

 

The difference has been dramatic. I'm still looking for the optimal dose. I was at 50mcgs>75>82.5. I have another test Tuesday to see where I am. I want to see how I feel in the "optimal" range for FT4 and am going to keep fighting until I get there (as the Endo would have happily quit at 75, when I knew I was improving bit "not there yet."

 

Find really smart people to help you understand you test results. Then self-advocate with every bit of energy you can muster.

 

Don't accept being sick as a "normal" condition. Thyroid issues are so easy to address with appropriate medications.

 

Bill

[gardenmom5]

It sounds like you need an appointment based on your symptoms. I would have new labs done that include but are not limited to thyroid. I would include vitamin D, basic metabolic panel. Do you have trouble sleeping? I might include a sleep study because apnea could contribute to symptoms like yours.

 

 

Sent from my iPhone using Tapatalk

 

and the iron labs - there are four.

 

if you can get to a functional medicine dr - they're generally more effective, re: open to lab values, than endos.

[IfIOnly]

I hear what you are saying about the benadryl and ambien, and I agree. There is no other way for me to get sleep though. I've tried so many things from vitamins, supplements, prescriptions and drugs, and just literally lying awake for weeks barely sleeping at all and losing it. For many years, I could do just the benadryl and melatonin combo, but since the summer I've needed the ambien too. Just the ambien and melatonin doesn't work either. I need all three. The necessity of sleep outweighs the risks and side effects, unfortunately. 

 

I can't exercise. I'm too weak except to walk much, but that's hit and miss too depending on my fatigue. 

[IfIOnly]

and the iron labs - there are four.

 

if you can get to a functional medicine dr - they're generally more effective, re: open to lab values, than endos.

 

Thank you! I think iron and thyroid would be a good place to start although. I've had iron tests before but not four, I think.

[IfIOnly]

My Internist said nothing about my thyroid numbers after I had them checked (after complaining of fatigue).

 

The Endocrinologist I saw told me my results were "normal." "Normal for whom?" I asked?

 

When pressed to treat me he said "I guess it's not unsafe, OK"

 

The difference has been dramatic. I'm still looking for the optimal dose. I was at 50mcgs>75>82.5. I have another test Tuesday to see where I am. I want to see how I feel in the "optimal" range for FT4 and am going to keep fighting until I get there (as the Endo would have happily quit at 75, when I knew I was improving bit "not there yet."

 

Find really smart people to help you understand you test results. Then self-advocate with every bit of energy you can muster.

 

Don't accept being sick as a "normal" condition. Thyroid issues are so easy to address with appropriate medications.

 

Bill

 

Thank you so much for sharing your experience, Spy Car. I appreciate your advice too.Thank you!

[Ellie]

Due to the thread here recently about optimal thyroid test numbers versus simply adequate, I pulled out a test done several years ago to check. The problem I'm having is finding which site was recommended to check them with. I randomly searched and according to one website, my numbers were pretty low. I'm trying not to freak out, but I'm kind of worried now. Can anyone help me with a reliable source? My test  in 2010 showed:

 

TSH 0.66 (0.34-5.60 range)

Free T4 0.88 (0.58-1.64)

Free T3 2.4 L (2.5-3.9)

 

Even on the reference range on the test these seem kind of low.  :crying:  I do not take any thyroid medicine or anything.

 

Yes, your numbers were pretty low. It's too bad that your doctor didn't offer medication then, because you were clearly hypothyroid. :-( And if it's been seven years since you had those labs, then it is probable that they are still that low, if not lower. Have you talked to your doctor yet? (although, bad news: it's hard to find a doctor to treat thyroid issues properly.). You should have new labs done (preferably the ones you had done before Free T3, Free T4, TSH, although you should not be treated based on TSH).

 

If you do Facebook, look for "Hashimoto's 411." You'll get really good information there. Also, check out Stop the Thyroid Madness. There are links on there for places to order the labs on your own if your current doctor will not. Of course, then the problem is getting proper treatment, but that's another issue. :crying:

[IfIOnly]

Yes, your numbers were pretty low. It's too bad that your doctor didn't offer medication then, because you were clearly hypothyroid. :-( And if it's been seven years since you had those labs, then it is probable that they are still that low, if not lower. Have you talked to your doctor yet? (although, bad news: it's hard to find a doctor to treat thyroid issues properly.). You should have new labs done (preferably the ones you had done before Free T3, Free T4, TSH, although you should not be treated based on TSH).

 

If you do Facebook, look for "Hashimoto's 411." You'll get really good information there. Also, check out Stop the Thyroid Madness. There are links on there for places to order the labs on your own if your current doctor will not. Of course, then the problem is getting proper treatment, but that's another issue. :crying:

 

Thank you. I'm calling my ND tomorrow for some testing. Hopefully, I'll get further with her than my MD. I don't understand because I've had several test over the years (only have results of one at home though, except a TSH result in my online medical chart in 2014 that was 1.16) and have specifically requested tests and have made it know that my mom has hypothyroid, so family history. She didn't know for years and suffered so much. Her huge goiter was the reason she finally figured it out, but by then it was too late and I'm pretty sure she had it radiated or something. 

Edited April 9, 2017 by ifIonlyhadabrain

[Jean in Newcastle]

You have an ND? Usually those are the best for thyroid issues.

 

 

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[IfIOnly]

You have an ND? Usually those are the best for thyroid issues.

 

 

Sent from my iPhone using Tapatalk

 

I've seen several NDs and MDs over the years. The one I have now is the one who caught that I have/had SIBO. No one has made a fuss over my thyroid though. 

[gardenmom5]

I hear what you are saying about the benadryl and ambien, and I agree. There is no other way for me to get sleep though. I've tried so many things from vitamins, supplements, prescriptions and drugs, and just literally lying awake for weeks barely sleeping at all and losing it. For many years, I could do just the benadryl and melatonin combo, but since the summer I've needed the ambien too. Just the ambien and melatonin doesn't work either. I need all three. The necessity of sleep outweighs the risks and side effects, unfortunately. 

 

I can't exercise. I'm too weak except to walk much, but that's hit and miss too depending on my fatigue. 

 

if all you can do is walk - you walk when it works.    if you can do a simple yoga practice (lots of youtube) - that can actually help. some yoga positions stimulate the thyroid.  other's the adrenals.  as your body adjusts to it - it can actually help you to sleep.

 

waking in the middle of the night insomnia - can  be linked to thyroid.   if you're hypothyroid - your adrenals will take up the slack by producing more adrenaline - until they simply can't.   I'd actually developed pain in one of my adrenals - my md didn't care.  she also had me very undermedicated.  for adrenals -it's a four point saliva test - and there is a whole list of things to stay away from before taking it.

 

 

 

read up on the diet that can help you.   for me, staying away from sugar additives of any kind (including artificial sweeteners) helps.  

[IfIOnly]

if all you can do is walk - you walk when it works.    if you can do a simple yoga practice (lots of youtube) - that can actually help. some yoga positions stimulate the thyroid.  other's the adrenals.  as your body adjusts to it - it can actually help you to sleep.

 

waking in the middle of the night insomnia - can  be linked to thyroid.   if you're hypothyroid - your adrenals will take up the slack by producing more adrenaline - until they simply can't.   I'd actually developed pain in one of my adrenals - my md didn't care.  she also had me very undermedicated.  for adrenals -it's a four point saliva test - and there is a whole list of things to stay away from before taking it.

 

 

 

read up on the diet that can help you.   for me, staying away from sugar additives of any kind (including artificial sweeteners) helps.  

 

Thank you! I don't know that I would have the strength to do any yoga that involves holding poses that require muscle strength, but I can certainly find some stretches. I've wanted to look but just haven't. Thank you for the suggestion and reminder.  Now that every thing isn't covered in snow here and it's warming up, I should start walking again when I can too.

 

I've had two through adrenal tests and my cortisol is very low during the day but rises in the evening. That is the exact opposite of what should happen.  :glare: I'm sure my cortisol being high at night is a part of my insomnia. I've tried several supplements to pull it down at night (under the supervision of a health provider) but the products gave me worse insomnia. Ugh.

[gardenmom5]

Thank you! I don't know that I would have the strength to do any yoga that involves holding poses that require muscle strength, but I can certainly find some stretches. I've wanted to look but just haven't. Thank you for the suggestion and reminder.  Now that every thing isn't covered in snow here and it's warming up, I should start walking again when I can too.

 

I've had two through adrenal tests and my cortisol is very low during the day but rises in the evening. That is the exact opposite of what should happen.  :glare: I'm sure my cortisol being high at night is a part of my insomnia. I've tried several supplements to pull it down at night (under the supervision of a health provider) but the products gave me worse insomnia. Ugh.

 

I'm not good at finding the practices - but a very simple practice that is more sitting/twisting, bending and stretching.  there is chair yoga out for for people who are too frail to stand.

it is infinitely adaptable - 

[Laurie4b]

I hear what you are saying about the benadryl and ambien, and I agree. There is no other way for me to get sleep though. I've tried so many things from vitamins, supplements, prescriptions and drugs, and just literally lying awake for weeks barely sleeping at all and losing it. For many years, I could do just the benadryl and melatonin combo, but since the summer I've needed the ambien too. Just the ambien and melatonin doesn't work either. I need all three. The necessity of sleep outweighs the risks and side effects, unfortunately. 

 

I can't exercise. I'm too weak except to walk much, but that's hit and miss too depending on my fatigue. 

 

I am so very sorry that sleep has been so hard for you. It must be awful. 

 

In addition to pursuing suggestions about thyroid, I think it's really important that you see a neurologist or at least get that appointment lined up in case everything doesn't clear up with thyroid. 

 

I would like to say this gently, but think I need to be direct: Becoming lost in familiar areas is a huge red flag neurologically.  It's not just a quality of life issue.  Since you have had this happen, if told your provider, and didn't get referred to a neurologist, then do whatever you need to to get referred asap. Even if it only happened once, it needs to be evaluated, but it sounds like you've had it happen more often.  (If you are by any chance overweight, there have been numerous studies indicating that physician bias can cause them to take symptoms less seriously than they do people who are not overweight. Go figure, but it happens.) Whether or not you may be experiencing weight bias, take your best advocate friend with you. I think physicians are more attentive when there is a witness. Tell him or her that your friend is there to be a second set of ears and have her take notes. 

 

Thyroid needs to be ruled out in every case and could well be the cause of the whole caboodle,  but that cognitive issue is very concerning and the sooner it's diagnosed the better. 

Some neurological problems underlie both sleep and cognitive decline. 

 

Best wishes. 

 

 

I am going through cognitive issues with a family member. 

[IfIOnly]

I am so very sorry that sleep has been so hard for you. It must be awful. 

 

In addition to pursuing suggestions about thyroid, I think it's really important that you see a neurologist or at least get that appointment lined up in case everything doesn't clear up with thyroid. 

 

I would like to say this gently, but think I need to be direct: Becoming lost in familiar areas is a huge red flag neurologically.  It's not just a quality of life issue.  Since you have had this happen, if told your provider, and didn't get referred to a neurologist, then do whatever you need to to get referred asap. Even if it only happened once, it needs to be evaluated, but it sounds like you've had it happen more often.  (If you are by any chance overweight, there have been numerous studies indicating that physician bias can cause them to take symptoms less seriously than they do people who are not overweight. Go figure, but it happens.) Whether or not you may be experiencing weight bias, take your best advocate friend with you. I think physicians are more attentive when there is a witness. Tell him or her that your friend is there to be a second set of ears and have her take notes. 

 

Thyroid needs to be ruled out in every case and could well be the cause of the whole caboodle,  but that cognitive issue is very concerning and the sooner it's diagnosed the better. 

 

Some neurological problems underlie both sleep and cognitive decline. 

 

Best wishes. 

 

 

I am going through cognitive issues with a family member. 

 

Both my MD and ND know all the symptoms I've mentioned here and more, and they seemed concerned and have tried some things but no referrals to specialists. I was referred to someone to get a MRI or CAT scan (can't remember) of my brain to rule out MS. Everything looked fine though, thankfully.  I think you're on to something about bringing an advocate with me. That would probably be so helpful. Whatever I'm doing is not working. I do not understand how I get through each day, but somehow I do. It's terribly difficult though. I also don't understand how I could be so sick for so long when I've seen so many doctors in the past decade, maybe 10 or so doctors. I guess I've sort of given up, but thank you for care and encouragement. I will try call my doctor tomorrow.

 

I'm so sorry you're going through that with you loved one but am thankful they have you to help them.  :grouphug:  :grouphug:

Edited April 10, 2017 by ifIonlyhadabrain

[Ellie]

Thank you. I'm calling my ND tomorrow for some testing. Hopefully, I'll get further with her than my MD. I don't understand because I've had several test over the years (only have results of one at home though, except a TSH result in my online medical chart in 2014 that was 1.16) and have specifically requested tests and have made it know that my mom has hypothyroid, so family history. She didn't know for years and suffered so much. Her huge goiter was the reason she finally figured it out, but by then it was too late and I'm pretty sure she had it radiated or something. 

 

A TSH of 1.6 is way too high. However, most doctors mistreat thyroid issues, so I'm not surprised that no one has picked up on this yet.  :-(

 

You will need to be your own advocate. And you may have to be pushy.

 

FTR, brain fog and insomnia can be symptoms of thyroid issues.

 

Also, the majority of women don't just have a thyroid condition; they have an autoimmune disease called Hashimoto's. You should request complete thyroid tests, including not only Free T3 and Free T4 but also TPO, TgAB, and TSI antibodies.

[IfIOnly]

A TSH of 1.6 is way too high. However, most doctors mistreat thyroid issues, so I'm not surprised that no one has picked up on this yet.  :-(

 

You will need to be your own advocate. And you may have to be pushy.

 

FTR, brain fog and insomnia can be symptoms of thyroid issues.

 

Also, the majority of women don't just have a thyroid condition; they have an autoimmune disease called Hashimoto's. You should request complete thyroid tests, including not only Free T3 and Free T4 but also TPO, TgAB, and TSI antibodies.

 

I will absolutely have Hashimoto's looked into. Thank you so very much.  I'm feeling things right now but just mostly sadness for all the years that may have been lost to and so terribly difficult to something so very treatable. Any little bit helps, so even if it's not a major factor, it it's a minor one that gets corrected, that will be very good too. And maybe it's nothing, only one way for me to find out, and that's to get tested (again).

[mom2samlibby]

You'll also want to have your B12 level checked, iron, folate, and Vitamin D.  Magnesium can help with sleeping issues.  Mine has improved so much since I started taking B12, folate, iron, magnesium, and Vit. D.

[IfIOnly]

You'll also want to have your B12 level checked, iron, folate, and Vitamin D. Magnesium can help with sleeping issues. Mine has improved so much since I started taking B12, folate, iron, magnesium, and Vit. D.

I've had those checked, thank you! I actually can't take B12 or D because they cause insomnia. I can do a couple 100 iu of D in the morning and that's it. My folate was actually high and B12 was fine to my surprise. D was/is low.

 

ETA: I can and do tolerate magnesium well, and it helps. Iron keeps me awake in small doses too. Ugh.

Edited April 10, 2017 by ifIonlyhadabrain

[IfIOnly]

It sounds like you need an appointment based on your symptoms. I would have new labs done that include but are not limited to thyroid. I would include vitamin D, basic metabolic panel. Do you have trouble sleeping? I might include a sleep study because apnea could contribute to symptoms like yours.

 

 

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it looks like I did have a metabolic panel done in 2014. My MD didn't say anything to me about there being an concerns. 

[Jean in Newcastle]

I have a metabolic panel done every 6 months. These levels are little pictures of your electrolyte and mineral levels at that moment. Those levels don't remain static. I think that you need a good doctor to explain things to you.

 

I know how frustrating it is to not have a clear diagnosis. Many many people with chronic problems go years before getting a diagnosis. I have had to do a lot of research on my own so that I could learn how best to advocate for myself.

 

 

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[IfIOnly]

Appointment Wednesday with ND for blood draw. I'm curious what my current doctor will say about my previous tests since I'll be bringing them with me.

[mom2samlibby]

I've had those checked, thank you! I actually can't take B12 or D because they cause insomnia. I can do a couple 100 iu of D in the morning and that's it. My folate was actually high and B12 was fine to my surprise. D was/is low.

 

ETA: I can and do tolerate magnesium well, and it helps. Iron keeps me awake in small doses too. Ugh.

 

B12 needs to be taken early in the day or it can cause sleep issues.  I take the D, iron, and Bs in the morning and the magnesium before bed.  

 

How high was your folate?  If those numbers are higher than the range, you might want to be tested for MTHFR.

[IfIOnly]

B12 needs to be taken early in the day or it can cause sleep issues. I take the D, iron, and Bs in the morning and the magnesium before bed.

 

How high was your folate? If those numbers are higher than the range, you might want to be tested for MTHFR.

Thank you! My folate was very high. I take methylated vitamins just in case, but I've just assumed I had it because of the high folate, even though not even the ND who took the test recommended a MTHFR test. I'll mention that on Wed. too. I took them first thing in the morning in tiny doses, methyl children's vitamins, and they still kept me up. This after switching from Thorne multi after realizing it was contributing to my insomnia. I've tried B12, iron, and D separately in the minute doses as possible, still insomnia, unfortunately. Argh. Edited April 10, 2017 by ifIonlyhadabrain

[Spy Car]

Appointment Wednesday with ND for blood draw. I'm curious what my current doctor will say about my previous tests since I'll be bringing them with me.

Really good. I hope you have a wise physician. Self-advocacy is draining, especially when one is fatigued. But study the numbers. Do not settle for "normal" when you know you are feeling badly.

 

The old numbers look clearly hypothyroid to me. And the same to others who have responed who I know have been around thyroid issues longer than me. But I've walked a similar path. Brain-fog and insomnia and fatigue unaddressed for too long.

 

We can't change the past. But do change the future. Push if the evidence shows you are hypothyroid. I'm still "in process" on finding the optimal dose of Levothyroxine, but I can tell you if this is your problem proper medication will be life-changing.

 

Chin up!

 

Bill

[IfIOnly]

Really good. I hope you have a wise physician. Self-advocacy is draining, especially when one is fatigued. But study the numbers. Do not settle for "normal" when you know you are feeling badly.

 

The old numbers look clearly hypothyroid to me. And the same to others who have responed who I know have been around thyroid issues longer than me. But I've walked a similar path. Brain-fog and insomnia and fatigue unaddressed for too long.

 

We can't change the past. But do change the future. Push if the evidence shows you are hypothyroid. I'm still "in process" on finding the optimal dose of Levothyroxine, but I can tell you if this is your problem proper medication will be life-changing.

 

Chin up!

 

Bill

 

  I'm sorry you felt unwell for so long but am glad you're on the mend. Thank you for all of this great info!

[Ellie]

I will absolutely have Hashimoto's looked into. Thank you so very much.  I'm feeling things right now but just mostly sadness for all the years that may have been lost to and so terribly difficult to something so very treatable. Any little bit helps, so even if it's not a major factor, it it's a minor one that gets corrected, that will be very good too. And maybe it's nothing, only one way for me to find out, and that's to get tested (again).

 

Yeah, I know exactly what you mean. I was first diagnosed as hypothyroid over 20 years ago. My symptoms were mild, and progressed slowly; I didn't realize just how poorly I was feeling until I felt well again. Thank goodness for a doctor who was willing to do all the labs, and to prescribe a high enough dosage of a natural desiccated thyroid (NDT), even though it required some nudging on my part. If only I had known 20 years ago that no, in fact, a TSH of *9* is not a good thing. :glare:

 

As Bill says, being your own advocate is tiring, but if don't advocate for yourself, no one else will.

 

Oh, you'll want an ultrasound of your thyroid. I don't have antibodies, but I do have a small nodule, which means Hashi's. Depending on the lab results and/or the ultrasound, you might want to check into the Autoimmune Protocol. Many people with autoimmune diseases can help themselves feel better by eating the right foods and avoiding the ones that hurt them.

[IfIOnly]

Yeah, I know exactly what you mean. I was first diagnosed as hypothyroid over 20 years ago. My symptoms were mild, and progressed slowly; I didn't realize just how poorly I was feeling until I felt well again. Thank goodness for a doctor who was willing to do all the labs, and to prescribe a high enough dosage of a natural desiccated thyroid (NDT), even though it required some nudging on my part. If only I had known 20 years ago that no, in fact, a TSH of *9* is not a good thing. :glare:

 

As Bill says, being your own advocate is tiring, but if don't advocate for yourself, no one else will.

 

Oh, you'll want an ultrasound of your thyroid. I don't have antibodies, but I do have a small nodule, which means Hashi's. Depending on the lab results and/or the ultrasound, you might want to check into the Autoimmune Protocol. Many people with autoimmune diseases can help themselves feel better by eating the right foods and avoiding the ones that hurt them.

 

Oh, wow on the TSH of 9. Thank you so much for the helpful advice. 

 

I don't know why I didn't think to do this earlier, but I felt my thyroid tonight and it feels swollen and tender. I could still feel the tenderness/light pain even a couple of minutes after gentle pressing. 

 

The test results can't come soon enough for me. 

[Ellie]

Oh, wow on the TSH of 9. Thank you so much for the helpful advice. 

 

I don't know why I didn't think to do this earlier, but I felt my thyroid tonight and it feels swollen and tender. I could still feel the tenderness/light pain even a couple of minutes after gentle pressing. 

 

The test results can't come soon enough for me. 

 

:grouphug: :grouphug: :grouphug:

 

Yeah, I didn't know anything about TSH or anything else. My doctors never told me. I'd say that I wasn't feeling right, and they'd say "But your numbers are normal." :cursing:  The medical group I was with when I was first diagnosed thinks that TSH that high is just fine. :cursing:

 

FTR, the average number of doctors people see before finally getting proper treatment for their thyroid issues is *five.* :cursing:

[IfIOnly]

ND was great. She looked at my old test scores and said absolutely she would have put me on something for my thyroid. She is having/had me do:

 

Thyroid check with Hashimoto testing

Four part iron test

Something to measure antibodies, CNC or something like that?

A urine adrenal test, which she says is the gold standard and wants to look into Addisons even though I don't have all the hallmark symptoms

Depending on test results will refer me to endo

She prescribed me 200mg oral progesterone

I feel like there was something else I'm forgetting

 

Test results next week.

Edited April 12, 2017 by ifIonlyhadabrain

[IfIOnly]

:grouphug: :grouphug: :grouphug:

 

Yeah, I didn't know anything about TSH or anything else. My doctors never told me. I'd say that I wasn't feeling right, and they'd say "But your numbers are normal." :cursing: The medical group I was with when I was first diagnosed thinks that TSH that high is just fine. :cursing:

 

FTR, the average number of doctors people see before finally getting proper treatment for their thyroid issues is *five.* :cursing:

Oh, sorry, I thought I responded to your post, Ellie! I found out today that, yes, my thyroid should have been treated 7 years ago. I'm dealing with anger too, intensely.

 

I think of how young I was 7 years ago and how little my sweet kids were and us just starting out on this homeschooling journey and how diificult it's been for my whole family for me to be so sick for a decade, including the years I felt crummy before going to get that low test result 7 years ago. How lost I've been. Why? I want to freaking cuss and yell and scream. I've never experienced anger like this.

 

Stupid, freaking doctors.

Edited April 13, 2017 by ifIonlyhadabrain