Newly Diagnosed with 150TSH and super low T3/T4 general questions

[PRG11]

This is a cross-post that I originally asked about in a much older thread but I'm making it a new question here so it's not buried:

Background-

I've been tired and 'out of it' for quite some time now at least 6 months but have chalked it up to getting a dog, stress, moving a couple of times, job, organizing a wedding, all the usual 'life' stuff.  

I'm a 29 yo male 6'1 and 195 weight and my blood was drawn at about 9am and I had a small glass of OJ in the system.  I've been physically active my entire life and was still really active until a few months ago when I just lost the time to actually go workout/run.  Albeit both were getting difficult just from general fatigue.  Regardless I was pulling off being able to run and workout relatively recently so I'm just not sure how serious of a condition I am/was in.

Anyhow I finally went in and got a bunch of blood work - I actually thought I might have lyme disease.  When they came back negative for that I was happy, only to find out they came back 'positive' for hypo.  I'm not sure how one can tell if you actually have a dead thyroid, but that's what my doctor told me (new doctor - hadn't see one in years) based on the following :

T4 Free:      0.3 ng/dl          Reference: 0.8-1.8
TSH:           >150 mIU/L     Reference: 0.4-4.5
T3, Total:     <25 ng/dl         Reference: 76-181
T3, Free      0.6 pg/ml          Reference: 2.3-4.2

She said she was surprised I was walking around with those numbers but I thought she was being dramatic and after doing some research it appears that everyone is different and so she was probably being a bit dramatic, but nonetheless she, on the spot, wrote a script for synthroid to start at 50/day for two weeks and then go to 75/day for 6 weeks then come back for blood work.  She didn't do the test for Hashi's but said she'd do it when I come back in after two months for a follow up (will post follow up results when I get those as well).

Thoughts anyone? Can the numbers give a false positive based on other factors going on with my body ie some sort of pituitary issue?  Assuming I had a healthy thyroid how long does it take to get to the levels my blood tests report it being at currently?  Now that I am on synthroid what can I expect assuming I am a hypthyroidist (does that word exist?)  Do I need to look for other things that this could have had an effect on getting to the point its at now?  Does it matter at this point if I do/do I even need to get tested for Hashi's?  General thoughts/opinions?

[gimel]

I already answered your other post, so let's keep our discussion there.

[Voz16]

i am looking for some advice.
I have just got results from my doctor, my TSH level is 39.5.  Exactly 2 years ago it was 1.9.
With this he said my B12 was very low and I need weekly injections
I'm D3 deficient and,
My ammunition to Hep B and C is "compromised"
He has now done a T4 blood test and I am waiting.....
I am so worried. Please can I have some advice?
V

[gimel]

Looking back at everything in this thread, I wouldn't argue with your doctor's plan.  At this point a positive test for Hashi's wouldn't change anything.  The main concern for you is getting your Free T3 and Free T4 levels high  enough to relieve symptoms.

Don't forget to supplement your Vitamin D and B12 and get ferritin tested.  Hypo patients are frequently too low in the ranges for all three of these.  

[PRG11]

There was no test to done to determine a cause so as of right now there is no diagnosis as to why/how I am where I am.

My doc said she was going to test for Hashi's when I go in for the second round of blood work (now in five weeks) and after I've been on Synthroid for a total of two months (2 weeks @50 and 6 @75).  I don't know if I should request she do the test for Hashi's before the second round of testing?  Would it make a difference?  

I think she believes that for all intents and purposes my Thyroid is no longer in play as far as Hashi's would be concerned and is treating it as a non issue and simply relying on the Synthroid as a means of supplementation right now, but that is simply an assumption from a lay man.

[gimel]

After you have gotten your Free T3 high enough to relieve symptoms, and your Free T4 level around the middle of the range, then typically you can remain stable at that dosage.  The caveat to that is whether some condition changes that affects your body's conversion of T4.  Or, another possibility would be if the cause for your hypothyroidism was Hashimoto's Thyroiditis, then the Hashi's antibodies continue to attack and destroy your thyroid gland.  While this is happening, the output of natural thyroid hormone is diminishing and the dosage has to be continually increased slightly to offset.  I don't recall seeing anything about a diagnosis of cause.   Was there one?

[PRG11]

Thanks to all who've chipped in.  For the time being I'll likely let the doctor treat it - at least for the next follow up or two.  I don't see an endo (good or bad) being able to do anything different based on the first round of blood tests other than to do exactly what my doctor has done which is start me on synthroid and do a follow up in what is apparently the general time frame of it taking full effect ie 6-8 weeks later.

I've been on it for a week and a day and I've been told I look healthier and not as "gray" as apparently that was the color I was taking on prior to being diagnosed.  I have noticed that while I still can fall asleep before I hit a pillow, that there are already times in the day when I'm not as tired and don't have the chills (even though the temperature is starting to drop) which I'm taking as a good sign.  I'm sure I'll notice it even more come next Tuesday after I've been on it for two weeks and then the following Tuesday after I've been on it for three and will have had a week long dosage of 75 vice the 50 that I'll have been on for the first two weeks.  

What I am wondering is will there be a tolerance plateau where I'll need to continuously up the dosage to maintain the energy I'm starting to get back  or is it more typical that once you find the right balance you're good to go?

[gimel]

Agree with ahmee.  Also, you should not anticipate that just because a doctor is an Endo, that the doctor will be a good thyroid doctor. Many of them specialize in diabetes, not thyroid.  Also, many of them have the "Immaculate TSH Belief' and erroneously only want to diagnose and treat based on TSH.  That simply doesn't work for most patients.  Others will test beyond TSH and test for Free T4 usually, and then fall back on "Reference Range Endocrinology", by which they will tell you that a thyroid test result that falls anywhere within the range is adequate.  That is also wrong.  First, the ranges are far too broad to be functional for many hypo patients.  Second, people are different and respond to thyroid meds differently.  

As I post quite often, "A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate criterion for dose adjustment must always be the clinical response of the patient."

http://hormonerestoration.com/files/ThyroidPMD.pdf


So, if your current doctor is willing to treat clinically, as described in the link, then I would try to work with her.  JMHO

[ahmee]

Both your vitamin D and B12 are low-- deficiencies in those two vitamins can cause symptoms similar to thyroid, so time to start supplementing. You will probably want to take a B-complex along with the B-12 (look for methylcobalamin rather than cyanocobalamin for better absorption). B-vitamins are good for energy. As for vitamin D, you can get a bottle of 2,000IU drops which are without any flavor, very easy to put drops on your food or tongue. There are also sublingual tablets.

[PRG11]

Thanks for all the input.  My next step is going to be trying to get a referral to an endo - my doctor says she can dedicate the time needed and doesn't think an endo is needed at this time but has no problem referring me to one if she thinks it's necessary but she said she doesn't think it is at this point.  I've only had 1 round of blood work done (see OP) and will have another done in 5 weeks.  Is that too long to wait to see/get an appointment with an endo?

Also, these were my Vitamin results for B/D from that initial blood work:

Vitamin D, 25-OH Total:      24ng/mL           Reference 30-100
Vitamin D, 25-OH D3:         24ng/mL
Vitamin D, 25-OH D2:         <4ng/mL

Vitamin B12, Serum: 437pg/mL        Reference: 200-1000

[flyingfool]

Since your symptoms match the lab results there is little chance that the test was erroneous.

You definately have low thyroid results.  And I too am somewhat surprised that you are not virtually bedridden with fatigue. So your Dr is not really being THAT dramatic.  You are THAT dramatically low.  As stated I've also never seen reported levels as low as yours.

You pituitary is screaming for your thyroid to produce. But with those dismal numbers it is clear your thyroid isn't up to the task.  Medication is the only way out of this now.

Now the trick is to slowly increase your medication dosages until you feel well.  And that is usually easier said than done. But you are at least starting the path to wellness.

Also do NOT settle for simply being in the "Normal" range.  Same is true for Vit D3 and B-12.

B-12 reference ranges in the USA start lower than they do in Japan and Europe which start several hundred points higher.  many people do not report feeling well until their B-12 is towards the very upper range.  In Japan the range starts out at I think 500 at the bottom.  Most refrence ranges seen in the USA start at 200 and go to like 1,200 as a high. Many people do not feel well until their B-12 is 700 to 900 if not even higher.  So don't let a "normal" result of 300 or something convince lyou that all is A-OK.

if you have done much reading here you probably already know that thyroid ranges for FREE T4 and FREE T3 are similar.  That is MANY (not all) people need their blood levels to be about 50% for Free T4 and about 66.7% of the range for Free T3.  Which you can see is significantly higher than simply "in range".  Both need 50% or higher in MOST (not all) people.

The key thing is how you feel rather than the strict numbers.

If not already advised make sure you separate your Thyroid medication from eating for at least an hour.  Preferrably take the meds on an  empty stomach with a full glass of water. Also separate thyroid from supplments expecially Calcium for maybe as much as 4 hours. As Calcium is known to dramatically reduce absorption of thyroid in the gut.

[Red_Star]

Interference to thyroid hormone assays is suspected when clinical symptoms do not match biochemical lab results.  Interference to thyroid hormone assays may show up with euthyroid, hypothyroid and hyperthyroid patients.

Causes of interference in thyroid hormone assays include heterophile antibodies (the best known heterophile antibody is human anti-mouse antibodies - HAMA), rheumatoid factor (RF), THAAb (anti-T3 and anti-T4 antibodies), and anti-TSH antibody (TSHAb).

[gimel]

First, so the info does not get lost, let me post the two replies to your prior post on another thread.


ahmee
6 hours
To: PRG11
Wow, it does appear from your numbers that your body is producing hardly any thyroid hormone, thus leaving you hypothyroid. The numbers of thyroid hormone (T3 and T4) are very far under the normal range, meaning your thyroid is pumping out far less hormone than the body needs to function properly, thus why you doctor declared your thyroid "dead". Your doctor has ordered all the right tests so far, and started you on medication, which is good. It will take at least 6 weeks for any dose adjustment to fully make its way into your system, so just be patient. You should post your next batch of labs when you receive them, though you'll want to consider starting a new thread so we're not just tacking on posts to a very old and very long thread.


gimel

5 hours
To: PRG11
Wow.  You win the award for the lowest levels of thyroid hormone I have seen from all the many posts I have read over the last 5+ years.  Glad your doctor has gotten you started on thyroid meds.  

One other thought is that hypo patients frequently find that they are also too low in the ranges for Vitamin D, B12 magnesium, and ferritin.  So, it would be a good idea to get those tested at first opportunity.  
____________________________
I do not think you got a false diagnosis from the test results.  In view of your symptoms, and both TSH being high, and Free T3 and Free T4 being low, it is pretty clear that you are hypothyroid and in need of the med prescribed by your doctor.  Since Hashi's is the most common cause for diagnosed hypothyroidism, and in view of your symptoms and test results so far, I fully expect that when your doctor tests for Hashi's, the results will  confirm.   Those tests are not vital for treatment, but valuable to confirm cause and what to expect going forward, which would be continued destruction of the gland and diminishing output of thyroid hormone, requiring increasing doses of thyroid meds.  

So, no I don't see a pituitary problem as a possible cause.  The pituitary is producing lots of TSH, but the thyroid gland cannot adequately respond, so the Free T3 and Free T4 levels are also low.  I have no real idea as to how long it took for your thyroid hormone levels to drop this low.  Don't really think it matters much at this point.  What really matters is that the doctor to this point seems to be moving in the right direction.  The 50 mcg starting dose of T4 is the right move.  Then a two week period gives some time to acclimate to the med.  Then an increase that will be needed, since your levels are so low.  Due to the half-life of T4 meds, it takes over 4 weeks to reach over 90% of final effect on blood levels.

You do need to look for other things, that is why I previously mentioned tests for Vitamin D, B12 and ferritin.   In addition I think you need to be aware that some hypo patients taking T4 meds find that their body does not adequately convert the T4 to T3.  Since Free T3 is the most important thyroid hormone, and correlates best with hypo symptoms,  you need to make sure that you are always tested for both Free T3 and Free T4 each time you go in for tests.

I also think you need to be aware that a good thyroid doctor will treat a hypo patient clinically, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not just TSH results.  So that is something you may want to discuss with your doctor, to see if he is willing to treat clinically as described.  If not, then ultimately you will need to find a good thyroid doctor that will do so.  And by the way, if you should start looking for another doctor, don't just assume that being an Endo guarantees being a good thyroid doctor.  Good thyroid doctors are hard to find.

[PRG11]

Also now taking additional vitamin d outside of my normal multi at the doc's recommendation because it was low as well.