Thyroid Disorders Community
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Diagnosed with hypothyroidism 5 mths ago and still having problems!

My name is Kristina. I am 37 years old and after gaining nearly 100 lbs I finally had my thyroid tested and my TSH was over 25. I was put on Levothyroxine 100 mcg's and they tested my blood 4 weeks later and my TSH was still high at over 6. I was put on 150 mcg's Levothyroxine and after around 2 weeks I felt great, nearly all my symptoms were gone. Now after being on 150 mcg's I feel good when I wake up, however, at around 230pm-4pm every day I feel absolutely horrible. I know this sounds crazy but this happens nearly everyday. I get like a lump in my throat feeling like there is something in there however, this has also happened in the morning as well. Most of all my body aches so bad I feel like I am getting the flu or something. I feel downright crappy and I have no energy to do anything. My body aches are so bad I have to force myself to do things that I need to do to take care of my 7 year old daughter. I have felt like this for well over a month or two so I started taking my Levo at night for several weeks and there is still no relief. I have made an appointment with my Dr but I am hoping I can find someone who can relate with what I am going through and can offer any suggestions. Thank you.
3 Responses
649848 tn?1534637300
Have they tested anything other than TSH?  They should be testing Free T4 and Free T3 every time they test TSH.  Those are the actual thyroid hormone and are much more important than TSH, which is a pituitary hormone and does not correlate well with actual thyroid hormone status.

When you see your doctor, you should also ask to get vitamin B-12, D and ferritin tested.  Deficiencies in these vitamin/minerals often go hand in hand with hypothyroidism and can cause some of the symptoms you have.  

Do you know the cause of your hypothyroidism?  

It often takes some time to get well once we start on thyroid hormones, so even though you've been on the medication for several months, you body is not completely healed yet...
They tested my Free T4 and at first it was .5ng/dl then I was put on 100mcg's of levo and the last time my Free T4 was tested it was 1.0ng/dl. To my knowledge they have not tested me for the B12 and D or the ferritin. Are those tests that would determine if I have something like Hashimoto's? I just don't understand alot of this stuff I am going through. It has effected my whole life and I think my family thinks I am crazy at this point. I do not know what caused my hypothyroidism. In 2004 I was told I was borderline (whatever that means) but never given any medication. Other test results in 2010 indicate my levels were high as well but just slightly over. I had to actually ask to be tested because I felt so bad. I do have Psoriasis not sure if that would cause it but i do know it's a symptom. I also have Osteoarthritis as well. Thank you for your help. It helps to know that their are others going through or have gone through this also.
649848 tn?1534637300
What's the reference range for the Free T4 results?  Ranges vary from lab to lab so they have to come from your own reports.

Vitamin B-12, D and ferritin wouldn't tell you the cause of your hypothyroidism, but deficiencies in those vitamins/minerals often go hand in hand with hypothyroidism.  Ferritin is the iron storage hormone and if that's low, it means you don't have enough iron. Iron and vitamin B-12 are both necessary for the production of red blood cells, which carry oxygen throughout the body, which provides energy.  Iron is also necessary for the conversion of the Free T4 thyroid hormone to the usable Free T3 thyroid hormone.

I'm assuming you've never had a Free T3 test done, is that correct?  Free T4 is considered a storage hormone and isn't used, directly; it has to be converted to Free T3, which is used by nearly every cell in the body.  Not all of are able to convert adequately and we have to have a separate source of T3 added to increase our Free T3 levels, because without adequate Free T3, we simply don't get well.  

You should ask your doctor to test, both Free T4 and Free T3 "every" time you have blood work done - it's best not to take your thyroid medication the morning of the blood draw until after you've had the draw, as the medication can skew the results, somewhat.

Also ask to get the B-12, D and Ferritin tested. Correcting any deficiencies can go a long way toward helping you to feel better.

The most common cause of hypothyroidism in the developed world is Hashimoto's, which is an autoimmune condition in which the body sees the thyroid as foreign and produces antibodies to destroy it. The destruction, often, begins long labs go out of range enough to show that one is hypothyroid, but symptoms often begin long before that time.  

In order to determine if you have Hashimoto's, you'll need to have antibody tests.  Ask for Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb)... you need both tests, because they're both markers for Hashimoto's and some of us have one or the other, some have them both.  Without them both, you could be misdiagnosed.

Your treatment won't change even if you do have Hashimoto's, but it's a good thing to know because those of us that have one autoimmune condition are more likely to get other autoimmune conditions.

In addition, some people find that changing their diet and adding some additional supplements helps them feel much better, as well.  

If your doctor isn't willing to run the suggested tests, I'd recommend that you find a different one, because having a good thyroid doctor that's willing to do proper testing and prescribe all types of thyroid hormone medication will make all the difference in the world as to whether or not you get well. Considering that, so far, your doctor has only tested TSH and Free T4, I'd say s/he might not be a good thyroid doctor because a good doctor doesn't have to be asked for the right tests.

You can tell your family that you aren't crazy... there are a lot of us, including myself, that have been where you are.  Ask them to be patient; hypothyroidism is an illness and like any other illness, recovery takes time.  It's not easy to get our hormones readjusted once they've been out of balance...
Thank you all so much for your replies! I go to the Dr tomorrow and if I cannot get any help I will switch Drs until I do.
Avatar universal
I agree with all the good info given to you by Barb.  I just noticed you mentioned the body aches you have and I want to also suggest that you should get tested for cortisol.  A diurnal saliva cortisol (free cortisol) panel of 4 tests is the best; however, few doctors will order that.  Instead they will usually order a morning serum cortisol (total cortisol) test, which should at least indicate if cortisol is a problem.
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649848 tn?1534637300
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