Possible to be hypothyroid but have normal tests?

[Ema]

Well I got my thyroid results. T4 is below normal, T3 is lowish but in normal range, TSH is middle of the range. What does that mean?
I have all the symptoms of hypothyroid, but they could all be blamed on CFS really so I don't know what to think. I saw my GP who has ordered an ultrasound of my thyroid gland but has already said he thinks there is nothing wrong with it, and would therefore not want to prescribe me thyroid - unless my specialist in Lyme disease and CFS says otherwise. He says you can make a normal gland atrophy if you take thyroid when the real cause of lowish hormone levels is NOT a defective thyroid gland.
I asked him if he thought this situation could be in activity of the pituitary gland(not sdtimulating as much TSH as needed), and he said no, he thinks that is impossible.

It would be great if you could post the actual results with the reference ranges. But in general, FT4 should be approx 1.4, FT3 should be at the top 1/3 of the range and TSH should be between 1-2. Your numbers may be using different units and may vary however from what we typically see here in the US.

Based on what you've posted and your reported symptoms, I'm not sure why you wouldn't want to trial thyroid hormones. Perhaps they might relieve some of the symptoms you are attributing to CFS/ME.

Hopefully your Lyme/CFS doctor will understand the importance of co-treating endocrine abnormalities along with the infections. The book, Insights into Lyme, features perspectives from many top Lyme doctors and every single one of them mentions how important it is to treat the endocrine system along with Lyme because Lyme can specifically attack the endocrine system and cause derangements. These derangements may not look like "typical" autoimmune endocrine problems so ignorant doctors may be unwilling to treat them but that is just a good reason to find a new doctor if at all possible.

I've never heard of anyone having their thyroid gland permanently atrophy from a trial of thyroid hormone but as I posted before there is a lot unknown at this point. I just think thyroid hormone is so vital to living that I choose to replace it.

 

[rlc]

Hi Mya Symons, RE I think it is possible to be hypothyroid and have normal tests at first.

It is very possible to be hypothyroid and have normal tests at first, and with a very good reason, the reference ranges for TSH are wrong, thyroid problems evolve slowly and can take years before they are so bad that they show up as a high TSH.

When they came up with the reference range they only excluded people with fully developed thyroid problems and left in people with evolving hypothyroidism, which resulted in a totally skewed reference range, which said that having a TSH above 5 means the patient has hypothyroidism, modern researcher have gone back and reexamined the reference range, when they took out the people with evolving hypothyroidism they found that a TSH level above 2.5 meant that the patient had evolving hypothyroidism and they estimate that millions of people are having the diagnosis missed because of this ,and because the symptoms of hypothyroidism are so similar to the ones being attributed to CFS they tend to end up being wrongly diagnosed as having CFS.

The true reference range for TSH should be 0.4-2.5 not the 0.4-5 that despite the fact that the science has been done is still being used by laboratories around the world.

This is explained and how people who fall into the gap between TSH 2.5-5 should be treated in the article unveiling the mysteries of the thyroid by Dr Mirza on this page http://www.bmj.com/content/337/bmj.a801?tab=responses

And there is a more detailed article about the TSH reference range being wrong on this page http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

All the best

 

[Athene]

Hi rlc,
That is what I keep reading too, that the ranges deny developing problems and the results only accept you have a problem when it has become so severe you can hardly function.



Ema, these were the results:

TSH 2.06 (range 0.4 to 4.0)

FT3 2.88 (range 1.5 to 4.1)

FT4 0.85 (range 0.89 to 1.8)

The abTPO and anti thyroglobulin antibodies were negative.


The oddest thing to me is that fairly good level of T3 while T4 is so low.

In previous tests I have been just in range, but with much lower T3 and also lower TSH.
About 3 years ago I had a test where all the results were low, but the T3 was below bottom of the range, whilst T4 was in range (and so was TSH).
So the results seem to vary quite a bit over time but in general, everything is low.



My doctor insists that if TSH is in range, then there is nothing wrong, and that your pituitary CANNOT have anything wrong with it, but that make no sense to me.
Surely there must be some factor that can impede the production of TSH when more is needed?
Otherwise, he is implying that the "normal" TSH with this low T4 means my body works perfectly well with a freaky low level of T4, and I can tell you right now, that it doesn't.

 

[Ema]

Ema, these were the results:

TSH 2.06 (range 0.4 to 4.0)

FT3 2.88 (range 1.5 to 4.1)

FT4 0.85 (range 0.89 to 1.8)

The abTPO and anti thyroglobulin antibodies were negative.


The oddest thing to me is that fairly good level of T3 while T4 is so low.



My doctor insists that if TSH is in range, then there is nothing wrong, and that your pituitary CANNOT have anything wrong with it, but that make no sense to me.
Surely there must be some factor that can impede the production of TSH when more is needed?
Otherwise, he is implying that the "normal" TSH with this low T4 means my body works perfectly well with a freaky low level of T4, and I can tell you right now, that it doesn't.

I think your FT4 and FT3 are both dreadfully low. Most people feel best with a FT4 about 1.4 and a FT3 in the top third of the range. Your TSH is starting to get a bit high but again, it is a wretched measurement of thyroid function at the cellular level. Chronic illness can depress TSH and as you know, it also can fluctuate.

Here is a great website with some cites you can print for your doctor:

http://nahypothyroidism.org/files/TSH_Proves_to_be_an_unreliable_test_for_Hypothyroidism.pdf

You can always test other pituitary hormones (like prolactin, ACTH, LH, FSH) to see if any other hormones are low. In my non-medical opinion as a thyroid patient, I would expect your TSH to be lower still if a pituitary problem was the main cause of your hypothyroidism.

If it were me, I would want to start a trial of thyroid meds to see what symptom relief might be attributable to hypothyroidism. Thyroid meds are easily available on the web as well.

 

[Mya Symons]

The true reference range for TSH should be 0.4-2.5 not the 0.4-5 that despite the fact that the science has been done is still being used by laboratories around the world.

This is explained and how people who fall into the gap between TSH 2.5-5 should be treated in the article unveiling the mysteries of the thyroid by Dr Mirza on this page http://www.bmj.com/content/337/bmj.a801?tab=responses

And there is a more detailed article about the TSH reference range being wrong on this page http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

All the best

This is interesting. My doctor thinks as long as my TSH is below 4, I am good. When I first got tested the doctor said I did not have a thyroid problem. When I got the tests back my TSH was at 6. His reference range was 1 to 6.1 is normal. By the time I got diagnosed my TSH was almost 10. Another reason I dislike doctors. I have never had a doctor that actually listened to what I was saying. It is all about test results.

 

[Athene]

I think your FT4 and FT3 are both dreadfully low. Most people feel best with a FT4 about 1.4 and a FT3 in the top third of the range. Your TSH is starting to get a bit high but again, it is a wretched measurement of thyroid function at the cellular level. Chronic illness can depress TSH and as you know, it also can fluctuate.

Here is a great website with some cites you can print for your doctor:

http://nahypothyroidism.org/files/TSH_Proves_to_be_an_unreliable_test_for_Hypothyroidism.pdf

You can always test other pituitary hormones (like prolactin, ACTH, LH, FSH) to see if any other hormones are low. In my non-medical opinion as a thyroid patient, I would expect your TSH to be lower still if a pituitary problem was the main cause of your hypothyroidism.

If it were me, I would want to start a trial of thyroid meds to see what symptom relief might be attributable to hypothyroidism. Thyroid meds are easily available on the web as well.

This all makes perfect sense to me, Ema.
Would you mind posting the link again please? It doesn't work for me.
Thanks!

 

[Ema]

Try this one:

http://nahypothyroidism.org/files/TSH_Proves_to_be_an_unreliable_test_for_Hypothyroidism.pdf

Otherwise if you google the nahypothyroidism website, you can find many useful and interesting articles.

 

[LHCTom]

Testing TSH is absurd and simply a way of saving money

Testing for TSH is simply a way of saving money. Its based on statistics which ignores most of the mechanisms in the HPT control loop and related systems. I'm an electrical engineer and designed and tested control loops just like the HPT loop and no engineer in their right mind would specify verification of a control loop like this by checking one control signal range. That is exactly what checking TSH is doing. Any good engineer would ridicule the way medicine does this unless a 10% error rate is acceptable. Medicine is willing to let 10% of their tests to fail just to save a few dollars.

Here is a decent set of tests to truly verify that the HPT system is working correctly:

http://www.stopthethyroidmadness.com/lab-values/

Here is a simplified diagram that is similar to what an engineer would use in simulation:

http://upload.wikimedia.org/wikipedia/commons/4/41/Thyrotropic_feedback_control.svg

Even a non engineer unfamiliar with control systems can see verifying this system by checking one node called TSH seen on the left side is ridiculous.

 

[Athene]

Hi folks,

I've had my appointment with the Lyme disease doc at last. He said about ten percent of people with lyme disease become hypothyroid, and my profile of low T3/T4 and also low TSH is typical, as the bacteria attack not only the thyroid gland itself but also the pituitary. This means the normal relationship beteween TSH and the thyroid hormones breaks down. It is also typical teo get a lot of volatility, with thyroid levels fluctuating very noticeably even from week to week.

He said fort this reason it is best to supplement with a very low dose, which will make me feel better but avoid the risk of having too much on my "high weeks".

Meanwhile I've had my thyroid gland scanned by ultrasound and it is full of nodules. They are all small apaprently (nothing bigger than 1 cm) but now I have to see an endocrinologist and have a biopsy to make sure they're not cancerous. I'm sure they won't be but, Oh how annoying.

Anyway thank you again to all of you for your very good advice and reassurances.
I'll report back on progress, though I had my first tablet today and the doc said it is such a low dose that I will take several weeks to feel the effect. He wants to take it very slowly and cautiously, and not risk increasing the dose too fast (if at all).

 

[Ema]

Hi folks,

I've had my appointment with the Lyme disease doc at last. He said about ten percent of people with lyme disease become hypothyroid, and my profile of low T3/T4 and also low TSH is typical, as the bacteria attack not only the thyroid gland itself but also the pituitary. This means the normal relationship beteween TSH and the thyroid hormones breaks down. It is also typical teo get a lot of volatility, with thyroid levels fluctuating very noticeably even from week to week.

He said fort this reason it is best to supplement with a very low dose, which will make me feel better but avoid the risk of having too much on my "high weeks".

Meanwhile I've had my thyroid gland scanned by ultrasound and it is full of nodules. They are all small apaprently (nothing bigger than 1 cm) but now I have to see an endocrinologist and have a biopsy to make sure they're not cancerous. I'm sure they won't be but, Oh how annoying.

Anyway thank you again to all of you for your very good advice and reassurances.
I'll report back on progress, though I had my first tablet today and the doc said it is such a low dose that I will take several weeks to feel the effect. He wants to take it very slowly and cautiously, and not risk increasing the dose too fast (if at all).

That all sounds great and it sounds like you have found a pretty good doctor who understands Lyme and the effects on the endocrine system...however, keep in mind that one can get intolerance to thyroid hormone due to low cortisol/reduced adrenal function and also from low iron (serum iron below about 100). Thyroid hormone intolerance can feel a lot like HYPERthyroid symptoms and cause one to reduce the dose which is a huge mistake as the symptoms are not from too much thyroid at all. It is vital to test and support the adrenals and iron before implementing thyroid supplementation in my opinion.

 

[Athene]

Hi Ema,
I've had my adrenals tested and they are firing on all cylinders (I have been doing adrenal therapy for almost a year).
But I do swing in and out of iron deficiency anaemia a lot, so I'll get that checked.
Thanks for that warning!

 

[SaraM]

In my case blood tests were normal and I was put on thyroid meds for 8 years, because I had thyroid nodules. This was a really bad idea. One must be very careful with hormones. I also think that Hydrocortisone played a major role in destroying my gut lining, but I had no other choice for treating my adrenal fatigue due to a car crash and a few years of using thyroid hormone.

 

[Ocean]

Does bioidentical thyroid (not sure if that's the right term) cause dependence the way thyroid meds can?

I found my tests and what I've had done are: T4 free, TSH, TPO

Are there other tests that are routinely done? Thank you.

 

[Sushi]

There are a number of thyroid tests that you have not had as most doctors don't prescribe them, but integrative doctors consider them important. Here is a link explaining some of them: http://thyroid.about.com/od/gettestedanddiagnosed/a/bloodtests.htm

Another good way is taking your temperature under your arm before you even move after waking up in the morning. If you are a degree or two below normal, that may indicate hypothyroidism. You have to leave the thermometer there for 5 minutes (if I remember correctly) and do it for about 5 days looking for a pattern.

Sushi

 

[Athene]

Hi Ocean,
The usual tests to start with would be T3, T4 and TSH.
If anything is funny you could then do antibody tests (there are 3 types) and have an ultrasound scan of the thyroid gland.

According to my doctor, thyroid dependence isn't that big a deal. He said it is not difficult to come on and off it as needed, if you take a low dose. I've got email contact with three people who have said the same thing - that may be a situation particular to CFS and Lyme disease people. The disease sems to attack the gland directly, but the severity of what it is doing there waxes and wanes.
Apart from this, now that I am taking thyroid, I feel so much better that I absolutely don't give a stuff if I am dependent on it for life. I am actually able to get dressed without needing to pray for strength while I do it; I can read bedtime stories to my son; I can go to the toilet every day! If you need it, you need it.

Sara M,
It sounds as if you had a very bad doc. I also think hydrocortisone is terribly damaging to the adrenal glands and to the body in general. I only had it for 6 weeks but the effect was literally catastrophic.
Have you read "Adrenal Fatigue" by James Wilson? I followed his gentle nutrition, diet and lifestyle therapies, and got my adrenals completely mended. (It takes a good few months). From having morning fasting cortisol at just 4, it is now up at the very top of the range.

 

[SaraM]

Hi Athene,
My doc was useless, but it was 20 years ago when some docs believed thyroid hormone could shrink nodules. I started taking HC on my own, because my new HMO doc kicked me out of his office when I told him atenolol did not help me with very bad palpitations and short of breath . I took HC for a year and found a new doc who tested all my vitamins and minerals, and diagnosed me with chronic fatigue and fibro. Almost every nutrient was off the chart, especially the ones needed for adrenal health based on Wilson's protocol. I don't think HC damaged my adrenal, but on the contrary it was the only thing that really helped me. I guess, and this is just a hunch, HC might have had a role in my gut problem which is getting worse over time. I am now waiting for the abdominal scan results to find out if I have intestinal inflammation.

take care

 

[Athene]

Hi Sara,
For what it's worth, I personally don't think HC would have caused your gut problems. If anything, it soothes inflammation. They prescribed it for my son at Great Ormond Street Hosp a couple of years ago when his gut was terribly inflamed, and it helped a lot (Though was totally the worst thing to do for someone with Lyme disease, which they had not diagnosed!)
If you do have inflammation, I think you need to grit your teeth to go through all the tests for every type of infection there is, from parasites to bacterial overgrowth to fungal infections- the lot. Nearly all of us with CFS have a "garden" of unwanted guests in there.

 

[Ema]

(Though was totally the worst thing to do for someone with Lyme disease, which they had not diagnosed!)

Healthy people have physiological levels of cortisol...it is the heart of the immune system. Too little OR too much cortisol is the worst thing for someone with Lyme disease. According to my LLMD, almost everyone with Lyme disease and resulting endocrine dysfunction will need some cortisol supplementation usually right along with thyroid. I would run very far very fast from any doctor that doesn't understand that those of us with Lyme need appropriate levels of hormones to fight the infection along with the antibiotics and herbal treatments.

 

[Ocean]

There are a number of thyroid tests that you have not had as most doctors don't prescribe them, but integrative doctors consider them important. Here is a link explaining some of them: http://thyroid.about.com/od/gettestedanddiagnosed/a/bloodtests.htm

Another good way is taking your temperature under your arm before you even move after waking up in the morning. If you are a degree or two below normal, that may indicate hypothyroidism. You have to leave the thermometer there for 5 minutes (if I remember correctly) and do it for about 5 days looking for a pattern.

Sushi

Unfortunately I have a fever every day and it fluctuates in temperature so I don't have a "normal" anymore! And my temperature is never low anymore. It used to be before I got my daily fevers. I think I've had a fever for going on almost a year and a half now. Not enjoyable!

Thanks Sushi and Athene for testing info. Probably I would have to get the tests elsewhere as if they are not done by mainstream docs I don't think mine will do it. I will still ask him again about it all though next visit.

 

[Sushi]

Probably I would have to get the tests elsewhere as if they are not done by mainstream docs I don't think mine will do it. I will still ask him again about it all though next visit.

I've had two different internists and a nurse practitioner order these tests for me, so they are not that uncommon. If you bring an article from a reliable journal showing that the "basic" thyroid tests are often not enough to tell the whole story, a good internist should consider ordering them.

Best,
Sushi