Possible to be hypothyroid but have normal tests?

Ocean

Senior Member
Messages
1,178
Likes
278
Location
U.S.
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
I see an endocrinologist. I did ask about one test in the past for example and he said he didn't think it was a telling test but that others may disagree. I think he's tested me for what he believes is relevant. Still I can ask again.
 

Athene

ihateticks.me
Messages
1,143
Likes
205
Location
Italy
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.
Hi Ema,
I totally agree that having enough cortisol is essential for fighting or beating lyme disease, this is what my lyme doc says. But he has alway been most emphatic that raising cortisol levels artificially is harmful. He says it makes the lyme incurable if you take cortisol supps - in fact one of the first things he asked in my initial apointment was if I had taken steriods, how much, when etc. I have read this quite a few times in the Internet too - I am pretty sure it is in the Burrascano guidelines that cortisol supplementation makes lyme resistant to all cures. So he is very firm that you have to raise it by natural methods.

The thing I have never actually asked him is exactly how/why this is so. I'll ask him in my next appt - I think it would be interesting to know.

As far as anecdotal evidence goes, I started a thread while I was doing my adrenal therapy and and everyone who joined it who takes adrenal hormone supplements seems to have constant trouble getting the dose right. The amount of cortisol and other adrenal hormones the body needs fluctuates drastically and rapidly throughout the day. Maybe the reason is connected with this... just guessing.
 

Ocean

Senior Member
Messages
1,178
Likes
278
Location
U.S.
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
Anyone know of any articles like that that I could bring in?
 

Ema

Senior Member
Messages
4,728
Likes
6,952
Location
Midwest USA
Hi Ema,
I totally agree that having enough cortisol is essential for fighting or beating lyme disease, this is what my lyme doc says. But he has alway been most emphatic that raising cortisol levels artificially is harmful. He says it makes the lyme incurable if you take cortisol supps - in fact one of the first things he asked in my initial apointment was if I had taken steriods, how much, when etc. I have read this quite a few times in the Internet too - I am pretty sure it is in the Burrascano guidelines that cortisol supplementation makes lyme resistant to all cures. So he is very firm that you have to raise it by natural methods.

The thing I have never actually asked him is exactly how/why this is so. I'll ask him in my next appt - I think it would be interesting to know.

As far as anecdotal evidence goes, I started a thread while I was doing my adrenal therapy and and everyone who joined it who takes adrenal hormone supplements seems to have constant trouble getting the dose right. The amount of cortisol and other adrenal hormones the body needs fluctuates drastically and rapidly throughout the day. Maybe the reason is connected with this... just guessing.
It is very difficult in my experience and of those in my Lyme support group often to get HC dosing right especially at first. It can take many months and unfortunately people give up because they lack proper guidance from their health care professionals. The infection can cause us to burn through cortisol much more quickly than usual which leads to ups and downs.

Further many people start on a dose of HC that is too low and get adrenaline surges which can feel very uncomfortable. This doesn't mean that adrenal support isn't needed but only that the dosing and steroid form needs tweaking. I personally finally got settled on a mixture of dexamethasone at night and HC during the day that feels very stable and my life has changed 180 degrees from last year at this time. Many of us with Lyme need the long acting steroid to act as a base for the HC which can then be dosed in a more natural rhythm.

It would be great if cortisol could be raised by "natural" methods but for many people the adrenals need more than that. Healthy people have physiological levels of cortisol and they are fighting off Lyme and other co-infections. How replacing what healthy people normally produce could somehow make an infection "incurable" defies logic to me. That directly contradicts my experience and those of the many other Lyme patients I know. I would be interested to hear his response because it makes me crazy to see people denied treatment that is needed to heal because of some sort of bizarre fear of low dose steroids.
 

Ema

Senior Member
Messages
4,728
Likes
6,952
Location
Midwest USA
The ratio can be tricky to calculate because it depends on the units for FT3 and RT3. There are MANY permutations depending on the lab. If anyone needs help calculating their ratio, please feel free to ask me. Just make sure to post your lab values with ranges and units.
 

nanonug

Senior Member
Messages
1,709
Likes
1,273
Location
Virginia, USA
The ratio can be tricky to calculate because it depends on the units for FT3 and RT3.
The above mentioned document states that "Optimal tissue levels are associated with a free T3/rT3 ratio greater than 1.8. (free T3 is reported in picograms per deciliter and reverse T3 in picograms per deciliter)." This appears to be a screw up. My free T3 is 3.7 pg/mL while my reverse T3 is 233 pg/mL. Both have the same units and both are within the "normal" ranges. There is no way to get a ratio of 1.8 ever if the units for both are the same.
 

Ema

Senior Member
Messages
4,728
Likes
6,952
Location
Midwest USA
Yes, the ratio calculator is a good thing!

I have always used greater than 20 for optimal conversion of T4 to T3. Anything under 20 indicates less than optimal conversion and a possible need for treatment with T3 only at least for a period of time.

With your numbers, I get a ratio of 16 which does indicate less than optimal conversion and a probable RT3 issue (which is very common in those of us with chronic illnesses and methylation problems).
 

xks201

Senior Member
Messages
740
Likes
326
What intrigues me more is hypoparathyroidism...where you supplement with vit d and calcium. I read a study showing some crohn's patients are hypoparathyroid simply from the inflammatory cytokines set off in their gut.
 

roxie60

Senior Member
Messages
1,791
Likes
604
Location
Central Illinois, USA
Hi Justy, the reaction to taking thyroid medication that you had sounds a lot like what Dr Mirza is saying, that doses that are too high in people who dont have complete thyroid failure will make the patient very sick. So it might be worth checking what doses you were given. Because the thyroid medication might be very good for you but at a lot lower doses.

Dr Mirza says in Unveiling the mysteries of the Thyroid found on this page http://www.bmj.com/content/337/bmj.a801?tab=responses

3. The authors recommend a full-dose levothyroxine replacement for
almost every one without coronary artery disease. This relies on the
assumption that by the time a person develops hypothyroidism, the whole
thyroid gland has failed. In our clinical experience, most people with
thyroid failure present with partial thyroid failure and they lose thyroid
function slowly over months or even years. Prescribing 100 mcg of
levothyroxine to a person with a TSH of 10 for example is a recipe for
suppressed TSH and symptoms of palpitations, tremors, anxiety, and other
symptoms of overtreated thyroid failure. Hashimoto's thyroiditis, which is
the precursor for thyroid failure, does not evolve into hypothyroidism
over night. Since the hypothyroidism is evolving, the treatment should
also be titrated gradually. This is even more cost effective, since it
saves many unnecessary phone calls, visits (including visits to the
Emergency department), and blood tests.

In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH
by 2 digits. This simple math will allow you to have a rough estimate of
levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.

All the best
Wow, and I have just been given levothyroxine (Synthroid) 88mcg. My TSH is 4.76. 88mcg sounds like a fairly high does for someone supposedly with subclinical hypothyroidism.
 

SOC

Senior Member
Messages
7,849
Likes
16,405
Wow, and I have just been given levothyroxine 88mcg. My TSH is 4.76. 88mcg sounds like a fairly high does for someone supposedly with subclinical hypothyroidism.
That does sound pretty high. o_O My daughter's TSH was 9.33 :eek: before they caught it. She takes 25mcg of levothyroxine. It dropped her TSH from 9.33 to 0.90 in 4 months. Your body is different from hers, of course, so there could be other issues at play.
 

Ema

Senior Member
Messages
4,728
Likes
6,952
Location
Midwest USA
The typical starting dose is 100 mcg of T4. This is reduced slightly for subclinical hypothyroidism.

"Hypothyroidism: 1.7 mcg/kg/day in otherwise healthy adults <50 years old, children in whom growth and puberty are complete,
and older adults who have been recently treated for hyperthyroidism or who have been hypothyroid for only a few months.
Titrate dose every 6 weeks. Average starting dose ~100 mcg; usual doses are </=200 mcg/day; doses >/=300 mcg/day are rare
(consider poor compliance, malabsorption, and/or drug interactions)."

http://www.globalrph.com/thyroid_related.htm
 

rlc

Senior Member
Messages
822
Likes
307
Hi Roxie, I’m no expert on thyroid meds, but going by Dr Mirza’s recommendations,

“In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH
by 2 digits. This simple math will allow you to have a rough estimate of
levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.”


If your TSH is 4.76 then 88mcg would be far too much, like I said in the other tread, I would want a second opinion from a different Endo about your adrenal results, taking thyroid meds when you might have an adrenal problem can have bad consequences.
All the best
 

Ema

Senior Member
Messages
4,728
Likes
6,952
Location
Midwest USA
Hi Roxie, I’m no expert on thyroid meds, but going by Dr Mirza’s recommendations,

“In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH
by 2 digits. This simple math will allow you to have a rough estimate of
levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.”


If your TSH is 4.76 then 88mcg would be far too much, like I said in the other tread, I would want a second opinion from a different Endo about your adrenal results, taking thyroid meds when you might have an adrenal problem can have bad consequences.
All the best
The only issue I have with this is that it is not the TSH that is most important after starting thyroid replacement but the FT4 and the FT3. This is especially true in cases of subclinical hypothyroidism.

Because of the feedback mechanism, it is very hard (if not impossible) to add to your own thyroid production. This is why most people start feeling hypo again about 4-6 weeks after initiating thyroid replacement and have to raise their dose.

The goal should not be any particular TSH (because it will often be suppressed somewhat when on an appropriate level of meds) but a FT4 of 1.2-1.4 and a FT3 in the top third of the range when on meds.

In my non-medical opinion. :)
 

roxie60

Senior Member
Messages
1,791
Likes
604
Location
Central Illinois, USA
But it also says on that package insert not to take thyroid meds with untreated adrenal insufficiency.
As a matter of fact the insert does say that :confused:.


I am desparate to feel better, to have energy. Spent 4-5 hours mid day today laying down again, exhausted and all I did was run to pick up Rx and a little computer time. Unreal. I really don't know what to do.
 

roxie60

Senior Member
Messages
1,791
Likes
604
Location
Central Illinois, USA
doctor wants me to schedule blood tests again in 8 weeks then see her again in 9 weeks. Of course by then I may not longer have healthcare/ins or a job but they dont really care.....that would be real life intruding into their wrld, cant have that.