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Should the TSH level be maxed at 5.5 or 3.0?

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Thyroid Disorders
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SoSt9
Regular Member
Joined : May 2012
Posts : 277
Posted 6/11/2014 6:43 AM (GMT -8)
Every one of my doctors use the scale of 0.5 to 5.5 to determine my TSH levels. When I do not take my thyroid pills (usually because I have to take meds 4 times a day without the thyroid pill, and two of them are calcium and iron), I have the hypo symptoms and my levels go to 5.6. I am on a minimal amount of hormone (only .25 mcg - which helps), but the symptoms only lessen. They never go away completely. If the actual range is 5.5, then I am hypo so very slightly. BUT if the range of .3 to 3.0 is what they should be looking at, then I have it worse than the doctors say.

First, should I even be concerned about the difference in the two ranges, and if so, how do I bring it up to the doctors without making it sound like I am telling them how they should do their jobs (or worse, make it sound like they are doing their jobs wrong)?

On a related note... my thyroid was just rechecked on Monday, but I don't know the results yet. (My doctor was out on Tuesday, so she would not have been able to call me if the results were too low.)
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jujub
Elite Member
Joined : Mar 2003
Posts : 10424
Posted 6/11/2014 8:58 AM (GMT -8)
The latest recommendation from researchers is to use the 3.0 number, but many labs are still using the old number, as are most doctors. Don't know which is the best, as it can be pretty hard to match symptoms and TSH levels. If you have a thyroid issue already, they really should be checking free T4 and T3 at least a couple of times a year.
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SoSt9
Regular Member
Joined : May 2012
Posts : 277
Posted 6/11/2014 9:52 AM (GMT -8)
I think the problem is that the correct doctors are not the ones checking my thyroid. Last year (a year or two after on Internist discovered that my TSH was 5.6), I had my primary care doctor check my T4, but I do not think I specified Free T4. She found the higher TSH as well. I will have to call and ask which one they checked this time. My Rheumatologist looks at my numbers, but I am pretty sure he uses the higher numbers too. I do not see an endocrinologist, and I am not sure if that is the doc to see. (Actually, I did see one a while back, but I do not remember the appointment very well. I don't know what I talked about with her. All I remember is that she said that I do not need to see her for whatever I said (I may have been talking about PCOS - I have very little memory of that appt, but my neuro is trying to figure out the memory issues).

With the Free T4 and T3, what should I tell her (my pcp) she should be looking for? If the labs do not see it, she is usually pretty good at listening to my suggestions. (And she is trying to follow up on my levels. My last one was two months ago.

Oh, I do have thyroid issues in my family. Hypo in my Mom's and Grave's in my Dad's.
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gary1231
New Member
Joined : May 2014
Posts : 15
Posted 6/14/2014 1:25 PM (GMT -8)
It is my understanding that the numbers should be under 3.0, especially for those with family history of thyroid issues. I have three female relatives with Hashimoto's, and I have it as well. My last test had my TSH at 6.79.

I would suggest seeing an endocrinologist. I got lucky and got one who is very well versed and was able to answer all my questions. She upped my Synthroid from 50mcg to 75mcg. It took about three weeks of still feeling lousy before I started improving.

I saw her because my primary care physician didn't see the need in performing any tests besides TSH. I was feeling really fatigued and I knew there had to be something more to it. The endocrinologist checked TSH, TPO (thyroid peroxidase antibody), Free T4, Free T3, and TSI (thyroid antibody).

You should have free T4 and free T3 checked. Your body converts T4 to T3. If you are on Synthroid/levothyroxine and your TSH gets within normal range, but your free T3 is still low, you may need to take T3 in pill form (Cytomel/liothyronine).

I would suggest having the TPO and TSI testing done to at least get a baseline for your numbers and to help your doctor determine if you have a thyroid/immune disease like Hashimoto's. I am still learning about being hypo and having Hashimoto's as it is a relatively new diagnosis for me. But from some of the reading I have done it is not just enough to treat the hypo, you need to address the Hashimoto's as well. And often times other immune issues go hand in hand with Hashimoto's, like celiac, anemia, neurological issues, panic/anxiety and late onset type 1 diabetes. I don't know if the same is true for Graves'. But Graves' is a hyper disease, and you are showing hypo. Graves' would be low TSH, normal/elevated T4 and elevated T3.

Your doctor could also order a scan of your thyroid to be done to look for nodules, look at the structure of the thyroid, look for inflammation, and it also can detect the degree of hyper you may be because you are ingesting iodine and the scan will reveal the iodine uptake levels.

It is more important that you have free T3 and free T4 tested than just T3 and T4. The research has shown that the free levels correlate better with diagnoses and treatments than total levels.

Different testing companies have different ranges for what is "normal" and what is "high" and what is "low." I would think it would be more on your doctor's interpretation of the results as to how they would classify you.

If you use Quest or Labcorp, you can check your own tests results.

I use Labcorp, and they have a service called Labcorp Beacon. Every time you have tests run, you can go on a few days later and look at your results (they will email you when they are available). It shows each test, your test result, and what reference range they use. They will tell you if they consider your test result to be low, normal, or high. The site also has all of the other testing encounters you have had with them online, so you can track your levels over time.

https://patient.labcorp.com/public/publicweb/patienthome.aspx

Quest offers a similar program called MyQuest. I do not know what services it offers because I have always used Labcorp. There is a smartphone app, which does seem more convenient than just using the website (some websites can be difficult to manage on a phone).

https://myquest.questdiagnostics.com/web/home
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