Personal Question

[lisa0948]

Just a quick question. I was diagnosed hypo 1 year ago and still havent gotten levels where they need to be because of sensitivity to meds. My question is when levels are low did you pull away from the ones you love because you simply could not function? Did you feel ashamed that you were no longer functioning as a normal human being?  Is this part of hypo or maybe something else?  No one seems to understand me anymore and the stress level is becoming unbearable. If you had a spouse that simply did not understand How did you get them to understand or BELIEVE that this could possibly happen to a person that has been medicated and still feel this way for a year?

Thanks Alot

[char201]

If your TSH is 15.37, no wonder you feel awful!! I see that your FT4 is very low...do you have free T3 results? If so, it would be helpful for you to post them. I am confused by your Grave's diagnosis?!?! Were you hyperthyroid at one point and have RAI for your thyroid? If not, then it would seem more likely to me that you have Hashimoto's disease. I'm not a trained medical professional, but I have lived with this disease for 18+ years, so that's my 2 cents worth. May be worth asking your doctor about this.

A good target TSH is around 1.0, but some people feel better with it even lower (it's about symptom elimination, not lab numbers). For some people, they do just fine on a T4 medication. In fact, many of my family members are doing fine on Synthroid alone. However, for other people, they may require a combination of T4 and T3, or even straight T3. It is really very individualistic. I do not do well on straight T4, but it took a long time for me to figure that out. Also, I believe that both synthetic and natural products have merit. It's often a trial and error process, but do not give up!! The most important thing is to work closely with your doctor to find what works for you.

As for celiac disease and the other comments posted about it, I do agree that whole grains are a good supply of nutrients and fiber, so if you are not celiac and not sensitive to wheat/gluten, then you may want to keep them as part of your diet. However, if you felt better before when you were gluten free, and you are up to removing gluten from your diet, it may be well worth the effort. There are lots of ways to get vitamins, minerals and fiber in the meantime.

Hopefully you can get your labs done asap so that you get some answers and can start feeling better!!

[Nat_16]

To determine whether you have graves or not you'd need a TSI antibody test (Thyroid-Stimulating Immunoglobulins).

Good luck!! :)

[lisa0948]

TGab is 52 and the range is <20  for some reason it  wouldn't print on there the way I typed it up there. I was told I was hypo  with Graves. But I was also told that these labs looked fine and there was nothing else she could do for me. She said that everything was in range except for that one number. I had an ultrasound done last year and it came back ok, but that was the same doctor that told me I was ok. I ran across my labs by accident and thats when I logged on here to get help.

I am on 88mcg of synthroid (name only), I have only been on this dose for about 7 weeks, I should have been tested this week but I just couldn't work it in. It will be sometime next week with this is a new doctor so I am trying to get some of the info I need to be prepared, so that I won't have to have another year of suffering.

[lisa0948]

thyroid peroxidase antibodies >1000  range  <35

[lisa0948]

thyroglubulin antibodies 52  range <20

[lisa0948]

oh forgot the tsh 15.37  thyroglobulin antibodies 52 range 1000 range <35

[lisa0948]

Here my latest test results
                                          ranges
t4 total          5.3                   4.5-12.5
free t4 index   1.5                   1.4-3.8
t4 free            0.9                   0.8-1.8
t3 total            77                    76-181
t3 uptake         28                    22-35

thryoglobulin antibodies  52        1000          <35

[Barb135]

In most cases, it won't hurt to go gluten free, even if you don't have celiac or a sensitivity; however, I have heard of adverse effects from being g/f if not needed.  Wheat and other grains are generally considered an important part of a healthy diet; however, everything in moderation.  

I do not agree that synthetic hormones, such as synthroid or cytomel won't work.  There are many who don't do well on synthetics and must opt for the natural thyroid hormones, such as Armour, NaturThroid, or others.  That said, there are many of us taking just a synthetic T4 med or a combination of synthetic T4 and T3; some even take a combination of synthetic AND natural.  It's quite erroneous to make a blanket statement that "synthetics don't work"........

It's very tough when you have family members who don't understand what it's like to feel so horrible that you can hardly move.  I used to fall asleep every time I sat down (not sure I didn't doze sometimes even while standing/moving around) and my husband would get frustrated with me because I couldn't even watch a 30 minute TV show with him, without falling asleep.  I still fall asleep in the car whenever we have to ride more than a short distance.

I will be anxious to see how your next labs turn out.  Please make sure you get a copy of the lab report, so you can post both the results and reference ranges here for us to see and help evaluate.

[oneamerican]

Hi - my relative is a celiac - and there is a celiac website with lots of information - celiacs
cannot eat gluten so white flour and many grains are off the diet. People of scots and
of italian background seem to be the most affected. You'll see it on the page and if he
responds poorly to bread and grains, test or no test, take if off the table. My relative had
to have a painful surgery where part of his stomach was removed. Being a celiac is not to
be taken lightly.

No one but a chiropractor noticed my thyroid problems and the over-the-counter thyroid
he suggested wasn't enough. I had peeling nails, hair as dry as straw, 10 day periods
which were like rivers, then insomnia crept in and I had only enough energy to go from
bed to sleep more on the couch. I was given t1, t2, t3 and t4 - also a bit of tetesterone.
The synthetics stopped working their miracle cure, synthroid and cytomel, and I'm
taking natural thyroid, 125mg. If you are only on the t4---- it won't work. It's both for it
to replace what the body can't produce.

Iron, vitamin b12, etc. don't replace thyroid - only a combination of synthetics or the
natural thyroid supports thyroid deficiency. Got it? Get it, and get well.

[lisa0948]

Yes, I am willing if it will make me feel better. I did it for a year for my son. The food was soo much better and now thinking about it I did feel better. I eat very healthy now but i do eat alot of wheat because of the iron, but I know of ways to do it without wheat.

Yes my sons bloodwork showed he had celiac,and the endoscopy proved otherwise.

I wont blame myself anymore, I can only do what this disease allows me to do. With that being said I don't think I would try to climb Mt. Everest with a broken leg. So why am i trying to do more than my body says I can with Thyroid.

[char201]

If you are willing to go gluten free for a trial period, it certainly couldn't hurt. You could see if it makes any difference for you. The only downside is that gluten is hidden in so many things that trying to figure out what you can or can't eat may add more stress to your life.

I'm confused about your son. Did he test positive for celiac through blood tests and then negative on endoscopy?

Also, please, please, please remember that if you are receiving poor treatment from your family, it is NOT you. People are responsible for their actions, so if someone is acting badly toward you, you are not to blame. I know that a chronic medical condition can really take a toll on relationships.

Barb 135 gave great advice about tests to ask for. And it sounds like you are getting other things checked too such as ferritin, B12, etc...See, you are already taking some great steps to address your health!!

[lisa0948]

Hi

Thanks for your concern on my family issues. I get this from immediate family, the ones that are supposed to love you unconditionally, I know its me but there is nothing at this moment that I can do about it. I try soooo hard. I also have a 21 year old with epilepsy with no insurance and her meds cost me about $800.00 a month, 2 boys, 19 and 16. That alone spells STRESS.

My oldest son was diagnosed with celaic about the same time that I was diagnosed with thyroid. Should I follow this diet and just see what happens? Be futher testing showed he did not have celiac.

Life aint alway beautiful but I try to make the best of this one life I was given.

Everyone here has helped me through this horrific time and if there is ever a way that I can do to repay, please ask and I will try to do what I can. I love my medhelp friends.

[lisa0948]

Sometimes we think we are going through hard times until we read something like this.The fact is that yes we are feeling bad but somebody out there is always worse off the me.

[lisa0948]

Wow that was so inspirational. Where do you find these things?
Thank You Sooo Much

[lisa0948]

Thanks for the right things to discuss with my doctor, this will be my first visit and I want to be armed so that if they have a problem with me , I will know right off the bat. I will be as forceful as possible without being downright rude. I can and will say Hi and Bye in the same sentence if I have to, My last doc let me suffer for a year and If I can help it I will never be treated the same way by a doctor that I am paying.

[magpieannie]

Here is another way that you can get loved ones to relate!

http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

[Barb135]

I don't see any mention of getting TSH, FT3 and FT4 - those are the most important tests you can get for thyroid issues, with FT3 and FT4, being the MOST important!! I also don't see any mention of antibody testing; have you been tested for both Graves Disease and Hashimoto's Thyroiditis?  What about an ultra sound to check for nodules, etc?  

You need all of these tests, along with the repeat of the B12, the vitamin D, etc.

We can all identify with your personal issues and not feeling well.  Hang in there, we are here for you.

[char201]

Hang in there! Seriously, so many of us understand what you are going through. It's is AMAZING to me the drastic effect this tiny gland can have on one's life. I know, I have lived it...and trying to explain to people how utterly crappy you feel on the inside and why you don't have the energy or motivation do things is sooooo frustrating. But, things can get better, they really can. One step at a time, one day at a time. I know from first hand experience how tough it can be to have patience when it comes to medications. In the process of figuring out the right meds or the right dosage, get support where you can - this forum, people in your life that you love. It concerns me that you write that you are getting mocked/made fun of...is this by family or friends?? No one deserves that. I think you should get those people to log onto this forum and read for themselves what all the rest of us have to say.
As for your medical question, two things occurred to me from your last post. First, when I was anemic, I took 300mg of iron 2x/day until my levels were restored (as measured by my hemoglobin and ferritin). Iron can make a HUGE difference in how you feel. When mine was low I thought I was dying I felt so awful. Ask your doctor about your current multivitamin and whether he/she recommends a higher dose. Second, have you ever been tested for celiac disease? I ask because both iron and B12 deficiencies can be symptoms of this disease, and there is a slightly higher incidence of it in thyroid patients since it's an autoimmune disease. On the off chance that you tested positive, it might explain some of your unresolved symptoms.
My final note - has your relationship always been so demanding or is this a recent development? We all deserve to be happy. To be dealing with an unresolved thyroid condition and an unsupportive partner is a lot to deal with. I hope you take time to really care for yourself. Sometimes our relationships can actually give us more physical symptoms than the thyroid problem alone. Please take care of your emotional health as you continue to care for your physical health.
Make sure you keep all of us updated about your upcoming labs and how you are doing :)

[lisa0948]

I took the shots for a month and 1000mcg pill  everyday  it came up and she told me to just take the pill, but this also the doc that let my TSH  level ride at 15 and told me there was nothing else she could do for me. Its time for new labs so I will get the new doc to test for all of the following when I see her. Also, I have been told to have ferritin, vitamin D, and recheck B-12. Is there anything else that seems to be affected so that i can recommend them when I go in. I am going in full force because I had the most horrible experience with the first doc.

[Barb135]

I can identify with the demanding relationship comment -- so many of can.  We know what it's like to not want to do anything, go anywhere, have sex, be understanding........ others have said it, now I'll say it --- you aren't alone.

One thing that caught my eye in your post was that your B12 level was only 200 and they have you on an oral supplement?  IMO - you should be on B12 shots; usually it's weekly to begin with, then depending on your levels drop to monthly.  In my case, I was on weekly, then monthly, which wasn't enough to keep my levels up, so we went to every 2 weeks; still wasn't enough, so I'm now at weekly.  If your body isn't absorbing the B12 you take in, it doesn't matter that you take 1000 mcg/day in pill form....

That said - please post whatever test results you have so we can comment more fully on your situation......... we are here for you.........

[lisa0948]

Medhelp has helped me tremendously. If it werent for medhelp Honestly I dont know where I would be in my life right now.

I get mocked  and made fun everyday and this site has helped me to laugh at them because they are the ignorant ones.

Thanks for the support and I will look through those journals.

Also, can stress kick You into hyper or hypo modes? Stress is a horrible culprit

[lisa0948]

Thank you That is just what I am going to do, Print it off and give to the ones who need to read it.  Thank you soo much , That was awesome

[stella5349]

You might even get more comfort (and a smile) reading some old journals of mine here. I know many of us have journaled here on Medhelp and really so many stories mock what you are going through right now that most of us have experienced.

Trust us, this is a place where we totally get exactly what you are trying to say. We might not know all the details of each thing on your plate but in the thyroid world the mind control and other emotional things that happen is not a stranger to us.

Keep up the journaling - you will get your answers with the more support you recieve with others.