Hypothyroidism

About 3 months ago I got diagnosed with severe hypothyroidism after nearly being in a coma. My TSH level was 150! The doctor stsrted me on levothyroxine and 1 month ago my TSH was down to 2.5. When I first started the meds I felt amazing, but lately I have been getting a lot of those strange feelings again. Any ideas why this is happening would be greatly appreciated. Thanks.

[gimel]

TSH is a pituitary hormone that is totally inadequate as the sole diagnostic for thyroid.  At best it is an indicator to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and T4).   TSH is even less reliable when already taking thyroid meds.  

At your first opportunity you should get tested for Free T3 and Free T4.  You should insist on those two tests each time you go in for testing.  FT3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that FT3 correlated best with having hypo symptoms, while FT4 and TSH did not correlate.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  Many of our members report that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to around the midpoint of its range.  

If you will get those tests done and post results and their reference ranges, members will be glad to help interpret and advise further.

[gimel]

TSH is a pituitary hormone that is totally inadequate as the sole diagnostic for thyroid.  At best it is an indicator to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and T4).   TSH is even less reliable when already taking thyroid meds.  

At your first opportunity you should get tested for Free T3 and Free T4.  You should insist on those two tests each time you go in for testing.  FT3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that FT3 correlated best with having hypo symptoms, while FT4 and TSH did not correlate.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  Many of our members report that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to around the midpoint of its range.  

If you will get those tests done and post results and their reference ranges, members will be glad to help interpret and advise further.

[brandy5875]

Thank you for your response. I am going to have that checked at the end of the week and I will post the results as soon as i get them. If my FT3 is not in normal range, what meds do the docs prescribe for that?

[flyingfool]

You state that if your FT3 is not in the "normal range" what meds do they prescribe.

You need to look further than somewhere within the normal range!  Actually as gimel stated above, many people achiev symptom relief when the FT4 are mid range and the FT3 are in the upper 1/3 of the range.

The dosage question is more complex than just if your FT3's are low.  

your body (thyroid) produces mostly T4.  But the body cells actually use ONLY Free T3 hormone.  Your body converts the T4 which is like a storage hormone that remains in the blood until it is needed.  At which time your body converts the T4 into T3 (mostly in the liver).

So if your body is converting properly, usually that means that if the FT4 are mid range, it will result in the FT3 being in the upper part of the range and you will feel fine.   However in as many as 60% of the people their body's do not convert the T4 into the needed T3.  

If you always are able to be tested with BOTH free T4 & Free T3 then you can determine if you have a conversion problem.  This will be evident that an increase in synthroid or levo (T4 med) will increase the FT4 but there will be little or no rise in FT3 levels.  In those patients a medication with a direct T3 component is needed.  The common med for this is Cytomel.

natural dissected thyroid (Armour, Nature thyroid) is natural thyroid and it has BOTH a T4 and A T3 component in it. So that is another option.

What Dr's don't realize if they do not test for FT3's is that you can get the patients FT4 into mid range or even high in the range and the patient will still complain of not feeling well.  The Dr will tell them in so many words that you are normal and it's all in your head.  Well it may be that your FT3 are still low and you have a conversion problem and are in fact still Hypo despite what TSH or even FT4 levels would indicate.  The Dr will INSIST that you are NOT HYPO, that you "can not be hypo".  But YES you can be since your body ONLY uses FT3.  And without enough of the ACTUAL hormone FT3 that your body needs available, you will still be starved of Thyroid.  

This is why it is so vitally important to have your FT3 levels tested.

Also be warned that taking tyroid meds, especially T3 med will likely suppress TSH.  Meaning that it will drop to well below 1 if not very near zero.  This will FREAK your Dr out thinking that you are Hyper. And they will want to cut your meds back.  Well it turns out that if you disregard TSH and only look at FT4 & FT3 you will find that you are likely still Hypo when TSH would indicate otherwise. If you get a Dr with immaculate TSH belief, You are in a world of hurt. Because it is almost assured that the Dr will get you on a roller coaster ride of hell and he/she will keep you sick by consistently under-medicating you to try to achieve a magic TSH number.  Rather than treating you clinically by your symptoms and you FT4 & FT3 levels being mid range and upper 1/3 respectively.  Everyone is different to where they feel "well".  But the mid range and upper 1/3 seem to be a fairly good target to aim at.

[brandy5875]

Thank you for the rapid response. I can not afford to see an endocrinologist because I do not have insurance. I am being treated at my local walk in clinic basically by telling them what I want tested and then they write my prescriptions as needed. When I was diagnosed it was because I told them what I thought I had and paid to have the blood work done. All of my medical diagnosis and treatments are done solely on my looking things up on the internet and trying to self diagnose, so any and all help is greatly appreciated. I just had my Free T3 And T4 labwork done today and should have the results in a few days. As soon as I get them I will post them and wait for more info, so please respond as soon as possible because I am  desperate for answers. SO tired of felling like crap! Thank you and God Bless!

[Super_sally888]

Let us know your results when you get them.  You may need a further adjustment in medications.

[brandy5875]

Just got my results back today. I told them to test the Free T3 and T4, but the results show Free T4 and ToTal T3, not Free T3. Isn't there a difference? If so I guess I'll have to go back.

The results were-     Free T4   1.2
                              Total T3 98

Now what?

[gimel]

Sorry to hear that you did not get the tests you wanted.  You will have to find out if the error was due to the doctor or the lab.  Lab people are so used to testing other than FT3 and FT4 that they frequently revert to auto pilot and do the wrong tests.  

Just based on your Total T3, and the symptoms, I expect that you will find that your FT3 is too low in the range and you will need to switch your meds to include a T3 source, and then adjust upward as necessary to relieve symptoms.  

[brandy5875]

Thank you for your response. I called my dr and they said they do not do the free t3 test and that I would have to go somewhere else to get it done. That would have been a good thing to tell me when I was paying for the test, but whatever.

If I am taking 75 mg of levothyroxine now, do you know what dose of Armour or Cytomel I would start on? Just curious because I may be able to get the dr to change my meds without having the Free T3 test because they said it was a lot more expensive. I know it has to be messed up with all the symptoms that I am having.

[gimel]

Your 75 mcg of levothyroxine is equivalent to one grain of Armour or Nature-throid.  Each grain of the NDT contains 38 mcg of T4 and 9 mcg of T3.  The T3 is about 4 times as effective as T4, so that's why the one grain is a direct substitute amount.  

[brandy5875]

Thank you!

[brandy5875]

Hey, I have another question for you. When I first got diagnosed with hypothyroidism my thyroid was swollen really big, but after I started my meds it went back dowm to normal. Well, for the past 2 weeks it has been swelling up again, not huge, but enough to notice it. Any idea why? Could it have something to do with my Free T3 levels, or what?

[gimel]

I did a bit of searching around through the Forum archives and found this old thread that I thought might be of interest to you.  

http://www.medhelp.org/posts/Thyroid-Cancer-Nodules--Hyperthyroidism/Thyroid-medication-and-swollen-glands-in-neck/show/263539

So, yes, increasing your FT3 level should help with the swelling.  Another thought to keep in mind is to get an ultrasound and have a look at your thyroid glands.  

I took a quick look through your previous posts, but did not find any info about the cause of your hypothyroidism.  Was it a result of Hashi's?

[brandy5875]

I don't know the cause of my hypothyroidism. Like I said, I am being treated at a walk in clinic because I can't afford to see an endocrinologist.
Is there a certain test that I need to find out if it's Hashi's?

[gimel]

At this point it is kind of academic to find out if it is Hashi's, so don't spend the money.  Knowing if it was due to Hashi's would not change the treatment anyway.  

[brandy5875]

Ok, thanks. That's good to know. I am going to see my doctor as soon as I can afford it and hopefully they can help me figure out what to do next. I'm not sure if I should try to have them change my meds now, or if I really need to get the Free T3 test first. So frustrating! Thyroid disease is so complex and a pain to understand. I have 2 children with diabetes and 1 with a kidney disease, and their disorders are really straightforward and fairly easy to maintain. I wish hypothyroidism was that simple.

[gimel]

With your Total T3 being as low in the range as it was, I think I would assume that the Free T3 will be similar, and go for the meds change at the next visit.  JMHO

[brandy5875]

Hello, just another quick question. I have been reading a lot about thyroid antibodies and was curious about how important these are. Is that a test that I need to get? If so, what would the results mean in terms of my medications? Again, Thank you for all your help!

[Super_sally888]

Having antibodies or not won't change anything about your current treatment.  

So I wouldn't worry about getting them done.  

Use your money for the critical tests (FT3, FT4, TSH) so you can manage your treatment / medication dosing better.

[brandy5875]

Ok, thanks.

[brandy5875]

After getting diagnosed with hypothyroidism in May, 2011, I also found out that I am now allergic to eggs. If I eat anything that has egg in it or even says may contain traces of egg, I get sharp pains in my head and it feels like my blood vessels go into spasms, then I feel sick all day. My question is, could there be a connection between my newly developed allergy and my thyroid? Also, is there any permanent damage that undiagnosed hypothyroidism could have caused me, because I believe I had it for atleast 6 years before getting diagnosed, and was just curious. Thank you!