# Brand New: Questions About My Thyroid Numbers



## TiredBill

I'm brand new to the forum, not even a chance to read back threads (sorry about that).

I'm 58 and have been suffering from fatigue, brain fog, and my weight has been going up for no great reason.

In early August I had a TSH test done as part of my annual physical exam (where I complained of extreme fatigue), The TSH was 3.29 mcIU/ml. Lab reference range for TSH is 0.35 - 4.00 mcIU/mL.

I asked that it be re-run last week. The TSH was 3.22. They also ran a Free T4 test that was 1.0 ng/dL. Reference range 0.8 - 1.5 ng/dL.

I meet with an Endocrinologist next week. I have a feeling he will say these results are "normal." I feel fatigued. Are these levels "normal" or are they indicative enough of low thyroid to ask for treatment?

Thanks for any advice.

Bill

ETA: Also are there additional tests I should ask to have run? I have Kaiser (which I like) so tests are reasonable cost-wise, but it can mean a "push" is necessary on the patient's end to get them run.


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## Lovlkn

Welcome to the board Bill.



> The TSH was 3.22. They also ran a Free T4 test that was 1.0 ng/dL. Reference range 0.8 - 1.5 ng/dL.


Your labs do point toward hypo.

Most here feel best with a FT-4 in 1/2 - 3/4 of range.

You should ask if they will run antibodies, TPO, Thyroglobulin and possibly an ultrasound of your thyroid.


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## jenny v

I would also request a Free T3 test.


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## TiredBill

Thank you both.

I was wondering about a Free T3. Totally new to understanding thyroid issues, but saw this is a common (important) test. I'm a little perplexed it wasn't ordered originally?

Are there multiple tests for antibodies?

What's my best argument to use on the endocrinologist to treat and/or run additional tests? I have a strong feeling I will need to self-advocate (or the levels will be blown off as "normal") and have until Thursday to get an education.

I appreciate you sharing your experience with me.

Bill


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## Lovlkn

> I'm a little perplexed it wasn't ordered originally?


Many doctors do not run this test routinely.

There is apparently a process for testing via the MD world. TSH is "gold standard", for screening and then it's up to the doctors understanding and ability to order thus bill the insurance company. Often FT-3 has to be sent to a lab other than their usual lab - thus more work for them. Plus I do not think alot of the doctors actually understand any thyroid test other than TSH, Only 1 lab in my area seems to run the FT-3. My experience,



> What's my best argument to use on the endocrinologist to treat and/or run additional tests?


As far as your endo appointment - it's a crapshoot. They may or may not order more or the proper tests. Go in as prepared as you can and ask for specific tests to be run if they do not mention they plan to do them. Antibodies can confirm hashi's, the ultrasound will take a look to see if you have nodules and if any look suspicious.

Be firm - ask questions you know the answers to and be sure to get copies of all lab work performed.


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## TiredBill

Lovlkn said:


> Many doctors do not run this test routinely.
> 
> There is apparently a process for testing via the MD world. TSH is "gold standard", for screening and then it's up to the doctors understanding and ability to order thus bill the insurance company. Often FT-3 has to be sent to a lab other than their usual lab - thus more work for them. Plus I do not think alot of the doctors actually understand any thyroid test other than TSH, Only 1 lab in my area seems to run the FT-3. My experience,
> 
> As far as your endo appointment - it's a crapshoot. They may or may not order more or the proper tests. Go in as prepared as you can and ask for specific tests to be run if they do not mention they plan to do them. Antibodies can confirm hashi's, the ultrasound will take a look to see if you have nodules and if any look suspicious.
> 
> Be firm - ask questions you know the answers to and be sure to get copies of all lab work performed.


Thanks Lovlkn. I have Kaiser, which has been great in most ways but frustrating in others.

Among the tests they ran this summer was my testosterone levels. They reported "normal." But when I started researching I found my numbers were normal for an 85+ year old. I was 6 points higher than their arbitrary score of 300 to treat. Since I was fully symptomatic of low-T I fought the system, got thrown out of one Endocrinologist's office and got a second Endocrinologist to yield when I presented studies supporting treatment by probably the leading Endocrinologist in the field with whom I'd been in contact and who I asked be referred to me to give a second opinion. Turns out the expert was the mentor of my Endocrinologist who cracked, and agreed to treat.

I've been almost 6 week on TRT. The changes in energy, lifting of brain fog and fatigue have been incredibly positive.

Now I wonder if "normal" range on my Thyroid scores are a repeat of the Testosterone scores (or not).

I'm really keen to do everything reasonable to improve my health. And especially to reduce fatigue. I know nothing about hypothyroidism. Does a small dose of a thyroid medication help people feel better when the known numbers are in my range?

Any advice for getting a "crash course" on hypothyroidism in a few days?

I appreciate the help. Wish I could rely on doctors alone. But...

Bill


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## Lovlkn

> I've been almost 6 week on TRT. The changes in energy, lifting of brain fog and fatigue have been incredibly positive.


Good for you - a positive first step.

Your Thyroid labs are actually quite hypo - being at the bottom of FT-4 range would have me nailed to the floor and unable to function.


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## Lovlkn

We advocate to have bothte FT-4 and FT-3 run , these tests will tell you the free and unbound thyroid hormone in your system at time of draw.

Many doctors do not routinely run a FT-3 but usually will if you request it. My doctor works with me,

Every doctor is different - there is no "typically done". Many GP's will simply write a prescription, usually for a T4 only medication such as Synthroid or a generic Levothyroxine..

Did you ask to be referred to an endo or did your GP just refer you?

Endo's seem to primarily treat diabetes, seemed like all my doctor did and I was surely the minority in the office. My issue was Graves and hyperthyroid which typically is treated by an endo.

Since you have a referral to an endo ask for the ultrasound - better safe than sorry. Antibodies to include TPO and Thyroglobulin and also a full thyroid panel to include FT-4 and FT-3.

You can also order the FT-4 and FT-3 yourself if you can;t wait - take a copy in with you. They will run their own but you will now have 2 tests showing that you are hypo and should walk out with a prescription for some levothyroxine.

https://www.healthonelabs.com/tests_offer/buytest/220/

For $64 you can know in a matter of a day or 2. This includes TSH, FT-4 and FT-3.

Noting better than waking into the specialist with a little lab history.


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## TiredBill

Lovlkn said:


> We advocate to have bothte FT-4 and FT-3 run , these tests will tell you the free and unbound thyroid hormone in your system at time of draw.
> 
> Many doctors do not routinely run a FT-3 but usually will if you request it. My doctor works with me,
> 
> Every doctor is different - there is no "typically done". Many GP's will simply write a prescription, usually for a T4 only medication such as Synthroid or a generic Levothyroxine..
> 
> Did you ask to be referred to an endo or did your GP just refer you?
> 
> Endo's seem to primarily treat diabetes, seemed like all my doctor did and I was surely the minority in the office. My issue was Graves and hyperthyroid which typically is treated by an endo.
> 
> Since you have a referral to an endo ask for the ultrasound - better safe than sorry. Antibodies to include TPO and Thyroglobulin and also a full thyroid panel to include FT-4 and FT-3.
> 
> You can also order the FT-4 and FT-3 yourself if you can;t wait - take a copy in with you. They will run their own but you will now have 2 tests showing that you are hypo and should walk out with a prescription for some levothyroxine.
> 
> https://www.healthonelabs.com/tests_offer/buytest/220/
> 
> For $64 you can know in a matter of a day or 2. This includes TSH, FT-4 and FT-3.
> 
> Noting better than waking into the specialist with a little lab history.


My meeting on Thursday with the Endo is primarily to discuss the efficacy of the TRT. Since my testosterone (total) went from 306 ng/dL pre-treatment to well over 700 and I'm feeling much better relative to starting TRT, I'm sure we will move forward. But the Endo and I agreed to a "test." He was reluctant to do it at all and only self-advocacy and knowledge of the scientific literature (plus the link to the leading Endo in the field of TRT) swung him around to trying it.

So I'm very (very) happy that I pushed.

But my Internist (who knew I was wiped out) never mentioned my Thyroid levels. And meeting the first time with the Endo it was up to me to question the levels (and with no expertise then or now). The Endo said at the first meeting that the thyroid was something to look at and re-test, but it was up to me to contact him last week to specifically add a thyroid screen when I went to have my testosterone labs run.

I did not know which particular tests to ask for thyroid-wise.

So ideally in addition to the TSH and FT4, I'd get a FT3 a TPO and Thyroid globulin? Is that everything? Other than an ultrasound?

If the doctor wants to order immediate medication, do I go for that? Or ask for tests first? And is levothyroxine what I'd hope or expect to get?

Does this sort of treatment help restore energy and function? I've been quite debilitated with fatigue and feel ready to battle for any and all treatments that make sense. I have a great deal to learn about hypothyroidism.

Thank you for your counsel.

Bill


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## Lovlkn

> So ideally in addition to the TSH and FT4, I'd get a FT3 a TPO and Thyroid globulin? Is that everything? Other than an ultrasound?
> 
> If the doctor wants to order immediate medication, do I go for that? Or ask for tests first? And is levothyroxine what I'd hope or expect to get?


Yes. and Yes. If they offer you the medication take it - based on your previous lab it would be justified.

Also, have you ever had your Vitamin D or B-12 levels checked? Being low in either can also contribute to fatigue.


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## TiredBill

Lovlkn said:


> Yes. and Yes. If they offer you the medication take it - based on your previous lab it would be justified.
> 
> Also, have you ever had your Vitamin D or B-12 levels checked? Being low in either can also contribute to fatigue.


Great questions about the Vitamin D and B12. Both were low, but barely within "normal." My Internist said nothing about the levels. But as I've been feeling better I've been going back and double-checking my lab results.

As I'm beginning to understand "normal" doesn't mean "optimal," and if I had not pushed on the testosterone I'd still be flattened. Instead, I enjoyed the best weekend in a very long time, and am feeling good today.

And today-your timing is perfect-I have a shipment of D3 and B-12 due for arrival. Spot-on!

Thank you for the support. I have been reading like mad. This forum is awesome. I'm going through back pages and then building my reading and research from there.

One question I have now is about going with levothyroxine vs using either a synthetic T3/T4 or a desiccated Thyroid (like Armour). Any thoughts? Does it take a FT3 test to help decide? Or is it one of those, "you have to try it to decide" type things?

I can't tell you how much I appreciate the help. I have much to learn, but already feel much better informed that I was a few days ago. I think getting a small boost with the thyroid might be the missing key to getting my life back. Knowledge really is power.

Best,

Bill


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## joplin1975

The standard operating procedure is to give t4 meds a try. Get your free t4 to at least 50% of the range, if not closer to 75% of the range. Once its there, start taking a hard look at free t3. If that isn't coming up to, again 50%-75% of the range, then you might want to consider adding in t3, be it by cytomel or from one of the desiccated products.

Also, TRT can positively impact thyroid numbers. You've got a lot of hormone changes going on. Go really slow and give any changes to your meds a long time to see results before you make any changes.

Good luck!


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## joplin1975

Well, the entire range is pretty small...so, yes, small changes can have a relatively big impact.

The whole "it's within normal range" argument is one we all fight. Keep pushing and being assertive.


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## TiredBill

Just reviewing the thread in advance of today's Endocrinologist visit, and wish to thank you for helping me and so many others who come into thyroid issues blind.

I've been reading back-threads in recent days and am so impressed with the kindness and level of knowledge so many of you are willing to share.

Much appreciated!

Bill


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## TiredBill

Just a quick update. The doctor visit went pretty much exactly as expected.

"Normal, a FT3 wouldn't tell me anything, why would you need an ultra scan?"

I pushed back, but only at about a 30% level, planting the idea that we will be re-visiting the issue soon.

He did agree with next labs to run antibodies with FT4 and TSH, and said if something showed up it would give him reason to treat.

I did not push him to the mat. This appointment was to access "the trial" of my TRT (testosterone) treatment. This Endo had been very opposed to starting me on TRT in the first place and only agreed to "the trial" (which he expected to fail) because I hit him with a mass of evidence supporting treatment and demanded a referral (if denied) to the leading Endocrinologist in the field (who was also my doctor's mentor) at which point he cracked.

Against his expectations, my T-scores were way up (spot-on optimal at just over 700) and my fatigue, brain fog, mood and well-being are doing a dramatic rebound. He was surprised that I'm seeing so much improvement so soon (as he said it can typically take 6 months to see such changes) and he expects continuing improvements.

So no longer "a trial." He's authorized permanent treatment, which I know will draw heat from his superior who doesn't want to ever treat anyone with a total T score over 300 (in contravention of the best contemporary evidence that one should treat based on symptoms without a hard cut off).

Anyway.

Plus, in a way (that I didn't let on), I'm sort of OK with changing one variable at a time and reserving thyroid as something to re-visit in the near future after we see where more TRT gets me.

I could not help but sting him once, when he said thyroid numbers were "normal" and I responded with "that's what you said about my testosterone, and if I'd listen to that I'd still be flat on my face."

Which provoked just the right degree of shaming.

I'm feeling better every day. I will keep a close watch on the thyroid.

My deepest thanks to those in this support community!

Bill


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## Octavia

TiredBill said:


> Plus, in a way (that I didn't let on), I'm sort of OK with changing one variable at a time and reserving thyroid as something to re-visit in the near future after we see where more TRT gets me.


I think this is likely a wise approach. One thing at a time so you know exactly what is/isn't working.

Glad you're feeling better.


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## joplin1975

> I could not help but sting him once, when he said thyroid numbers were "normal" and I responded with "that's what you said about my testosterone, and if I'd listen to that I'd still be flat on my face."


Ha! Good one. 

I'm in agreement, too, that changing one variable at a time is a good idea. For what it's worth, my husband was feeling ill for a while and, after loads of testing, he was hypothyroid and had low T numbers. There was lots of debate about what to treat first and he decided to tackle testosterone first. It took a while to find a TRT that would raise his numbers to acceptable levels, but once he found that sweet spot, his thyroid levels normalized and he does not take any thyroid medication.

I hope you continue to feel well!


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## TiredBill

joplin1975 said:


> Ha! Good one.
> 
> I'm in agreement, too, that changing one variable at a time is a good idea. For what it's worth, my husband was feeling ill for a while and, after loads of testing, he was hypothyroid and had low T numbers. There was lots of debate about what to treat first and he decided to tackle testosterone first. It took a while to find a TRT that would raise his numbers to acceptable levels, but once he found that sweet spot, his thyroid levels normalized and he does not take any thyroid medication.
> 
> I hope you continue to feel well!


Thanks for sharing that information. As I read it seems like thyroid and testosterone are pretty interlinked. Makes sense.

My Endocrinologist was pretty astounded that my numbers were perfect on the standard TRT dose with no tweaking thus far. I do want a future discussion (argument) about the protocol as bi-weekly injections seem to produce some highs and lows (at least in this early stage).

I'd love to see this do the trick on the thyroid too. Fingers crossed.

Bill


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## joplin1975

Yes, my husband did the under arm gel (for whatever reason, it crashed his numbers) and then moved to bi-weekly injections. He struggled tremendously with the highs and lows. He has since moved on to subdermal pellets, which seem to work well for him. It keeps him relatively stable, although he uses twice the recommended number pellets.


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## TiredBill

Greetings all.

For those who remember (or re-read the thread) I'm a 58-year-old male who has been suffering from significant fatigue.

Back in July I had a physical and a lot of bloodwork done. "All normal" according to the internist.

But as I investigated (pushing through the brain fog) *I* discovered several of my labs were very far from optimal. Among them Testosterone, TSH, and Vitamins D & B12.

A massive push on my part, armed with studies and a phone consult with perhaps the leading Endocrinologist in the field (and mentor to my Endocrinologist) put enough pressure to crack the initial (and adamant) refusal to treat low testosterone.

TRT has been helping. But is is not the complete answer. This I know.

It took me more time to understand my Thyroid numbers were bad. I appreciate this forum and those who've replied earlier to help me get an education.

I was willing to push thyroid treatment down the road a bit to see what TRT alone would do. I now feel it is time to push (and I'm afraid it may be a "push") for thyroid meds when I see the Endocrinologist next week.

*My lastest results: *

*TSH 3.52 mcIU/mL (Range 0.35-4.0)*
*FT4 0.8 ng/dL (Range 0.8-1.5)*

*TPO AB <3.0 IU/mL (Range <=5.5 IU/mL)*

I asked for, but was refused: FT3, Reverse T3, and the additional antibodies test, because they are "not traditional medicine" (insert eye-roll here).

I don't know how to read this TPO. This is good news? It rules out Hashimotos?

The TSH and FT4 suggest hypothyroid, yes?

I've now seen the literature showing 95% of people with a healthy thyroid are under 2.5. So I should not "buy" a TSH of 3.52 as "normal" when I'm suffering from profound symptoms of fatigue, right?

From you all I gather FT4 should be towards the top of range, correct?

I want to try treatment. This is indicated, right? If not please tell me.

Any advice on how to convince a potentially reluctant Endocrinologist (who I hope to replace, but it is a tricky situation) to treat me?

Are there such things as trials?

What sort of lab numbers are good targets for TSH and FT4?

BTW I followed the Barnes Basal Temperature protocol upon waking using a mercury thermometer held under my arm for 10 minutes over 3 days and the temps were consistent with hypothyroid.

Thanks for any input. I appreciate it.

Bill


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## Lovlkn

> *TSH 3.52 mcIU/mL (Range 0.35-4.0)*
> 
> *FT4 0.8 ng/dL (Range 0.8-1.5)*
> 
> *TPO AB <3.0 IU/mL (Range <=5.5 IU/mL)*


FT-4 should fall somewhere between 1/2-3/4 of range - you are bottom range thus your TSH is high because it is screaming for more thyroid hormone to be released in your system.



> The presence of TPO antibodies in your blood suggests that the cause of thyroid disease is an autoimmune disorder, such as Hashimoto's disease or Graves' disease. http://www.mayoclinic.org/thyroid-disease/expert-answers/FAQ-20058114


Good news - it's likely not autoimmune thyroid issue.

Bad news- what's causing your low thyroid?

I suggest asking for a thyroglobulin antibodies and possible ultrasound.


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## TiredBill

Lovlkn, is it more about finding the cause of the low thyroid as much as treating the condition?

Am I right in reading between the lines that would want to rule out thyroid cancer, or are there different (or additional) culprits on your mind? My lack of knowledge comes into play here. Don't worry, I'm not prone to over-reaction to possible explanations.

And I don't know if "that's just the way it is" and thyroid meds are necessary without knowing the root cause is a reasonable condition (or not).

I asked for a thyroglobulin antibodies test (and FT3 and reverse T3) but the test request was rejected. I also mentioned an ultrasound for nodules at my last visit and got a look of incredulity from the Endo, who blew it off. You know the type, I'm sure.

I really appreciate the feedback. I'm not quite the noob I was when I first posted, but I have a lot to learn yet. I'd feel more assured if I had a physician who was appropriately pro-active, but I have little confidence in him and need (and appreciate) the support you all have given me so I can self-advocate.

Cheers,

Bill


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## TiredBill

Saw my Endocrinologist today. I expressed concerns about my thyroid numbers.

He said "they are normal."

I said "normal according to whom?"

He asked if I wanted thyroid meds? I said yes.

Will start levothyroxine tomorrow. sounds like a very small dose 50 mcg.

Bill


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## Lovlkn

TiredBill said:


> Saw my Endocrinologist today. I expressed concerns about my thyroid numbers.
> 
> He said "they are normal."
> 
> I said "normal according to whom?"
> 
> He asked if I wanted thyroid meds? I said yes.
> 
> Will start levothyroxine tomorrow. sounds like a very small dose 50 mcg.
> 
> Bill


Gheesh - and he changed his mind "just like that".

What the HECK is wrong with these people we call Dr.?

Just make sure they run BOTH the FT-4 and FT-3 labs.



> Lovlkn, is it more about finding the cause of the low thyroid as much as treating the condition?


In your case - it's likely not autoimmune, so what is it? Thyroglobulin antibodies would help to "rule out" though it does not confirm nor disprove a person having thyroid cancer. The Ultrasound would identify suspicious nodules if thyroglobulin was detected. Not all nodules on a thyroid are cancer but in my opinion nodules on a thyroid can and do impact thyroid function.


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## TiredBill

Lovlkn said:


> Gheesh - and he changed his mind "just like that".
> 
> What the HECK is wrong with these people we call Dr.?
> 
> Just make sure they run BOTH the FT-4 and FT-3 labs.
> 
> In your case - it's likely not autoimmune, so what is it? Thyroglobulin antibodies would help to "rule out" though it does not confirm nor disprove a person having thyroid cancer. The Ultrasound would identify suspicious nodules if thyroglobulin was detected. Not all nodules on a thyroid are cancer but in my opinion nodules on a thyroid can and do impact thyroid function.


Yeah, pretty much went from you are "normal" to "I'll write you a prescription" in a heartbeat, saying "it isn't unsafe."

It was what I wanted, but playing my own doctor really isn't my ideal scenario. Not hardly.

This guy will not run FT3. He considers it useless and outside "traditional medicine."

I will push forward on the antibodies test.

Bill


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## Lovlkn

TiredBill said:


> Yeah, pretty much went from you are "normal" to "I'll write you a prescription" in a heartbeat, saying "it isn't unsafe."
> 
> It was what I wanted, but playing my own doctor really isn't my ideal scenario. Not hardly.
> 
> This guy will not run FT3. He considers it useless and outside "traditional medicine."
> 
> I will push forward on the antibodies test.
> 
> Bill


You can run it yourself - it's $29 for that one test. I think it would be most helpful to be fun at same time with FT-4 which means $58 for both or you can possibly show up for lab draw with 2 lab requests?

There are a number of online labs that run thyroid tests and even antibodies, so it may be just as easy to run yourself and if abnormal find a doc who is willing to treat.

My doc calls my Cytomel ( T3) therapy " unconventional" but prescribes it and tests FT-3 because he probably got sick of me insisting he run it - LOL


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## TiredBill

An update.

I started taking 50 mcgs of levothyroxine on Friday. Unfortunately, I got hit at the same time by flu and was in bed with a fever and the chills for several days. But even as lousy as I was feeling it seemed like something else was going on. I understand the power of hope and placebo, but dang me if levothyroxine isn't having a positive impact already.

The last few days I've been up feeling good, with more mental clarity and energy than I've experienced in a long time.

After feeling truly desperate, I now have hope.

Merry Christmas and Happy Channukah to all those celebrating the holiday season.

Bill


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## jenny v

Sometimes the medicine can work pretty quickly for people. Just make sure you're having your levels checked regularly.


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## TiredBill

Labs are scheduled for 6 weeks from commencement (so 5 weeks from now).

Does that sound reasonable?

Bill


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## joplin1975

Yes! Perfect plan! Happy holidays!


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## TiredBill

joplin1975 said:


> Yes! Perfect plan! Happy holidays!


Happy Holidays to you. And thank you all for the support you've extended to me and so many others.

I'm sure you all know how much harder it is to find answers when one is not feeling well or thinking entirely clearly.

I feel like I'm on a good path.

Bill


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## Lovlkn

We have an amazing team of posters here!!!!

So glad you are feeling better Bill.


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## TiredBill

So it has been about 6 weeks since starting a low dose of generic Levothyroxine (Mylan Labs) at 50 mcgs.

I got lab results back and would like input.

My *TSH* (which had been at 3.29, 3.22, and 3.52 in previous tests) has dropped to *2.35 mcIU/mL *(Range 0.35-4.00).

My* FT4 *(which in previous tests was 1.0 and 0.8) was only *1.0 (*Range 0.8-1.5 ng/dL)

So to my (non-expert) eyes it looks my TSH is moving in the right direction (but still too high) and the Free T4 is still towards the bottom of range.

While I "felt" the Levothyroxine very quickly, the benefits plateaued almost immediately and I felt like I needed more (even without seeing the lab results).

My question now is what increase in dose would you all suggest I push for? I'd like to rely on the expertise of gifted Endocrinologist; however, at every turn in my relationship with my doctor I've had to drive the decisions. Had I not, I'd have gone untreated.

Any insights on how to dose? If it matters I'm a large guy at 6' 2" with the remnants of an athletic build from football playing days and some extra pounds (about 240).

I have no doubt I'd benefit from more Levothyroxine. What sort of increase makes sense?

What is the minimum amount of time for a meaningful re-test if the Endo demands a "go slow" approach?

I want to beat the fatigue I'm still feeling.

Thank you all for your support!

Bill

ETA: I meet with Endo on Monday


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## joplin1975

That experience of feeling immediate benefits followed by a plateau is pretty common. It really just indicates that you need the medication.

Your next logical step would be to try the 50 mcg dose.


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## jenny v

I think he's currently on the 50mcg, so the next dosage increase would be 75mcg.


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## joplin1975

Whoops -- my bad! Thanks, Jenny!


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## TiredBill

Right, 50 mcgs.

So is it reasonable (given my numbers that seem to me to have budged very little) to go for the smallest possible increase (to 75 mcgs) or to push for a higher dose (like 100)?

I'm very tired of being tired. I don't want to be rash, nor do I want to suffer from unnecessary incrementalism.

Thoughts?

Bill


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## joplin1975

While I wouldn't be surprised if you ended up at or above 100mcgs, going the incremental route is really, really important.

The biggest issue is that doubling your meds can be a lot tougher than you'd expect. I went from 50mcgs to 100mcgs and dealt with everything: stomach issues, anxiety, insomnia, sweating etc. You really need to increase slowly.

The other issue is that in the event you become overmedicated, it's much, much harder to get back on track. You usually have to go off your meds for a couple of days - but sometimes longer - and the go back to your previous dose for six weeks before you try to increase again.


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## jenny v

Agreed, low and slow increases are the way to do this. Jumping up too quickly just results in different problems and taking longer to find your ideal dose.


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## TiredBill

Thank you both for being voices of wisdom and experience.

I must admit that I've grown impatient in my desire to feel better. The initial dose gave me a taste of the idea that Levothyroxine could help move me in the right direction.

I don't want that impulse to inadvertently set me back.

I appreciate the good council !

Bill


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## joplin1975

We ALL understand where you are coming from -- believe me!


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## TiredBill

joplin1975 said:


> We ALL understand where you are coming from -- believe me!


I have no doubt. Thank you for being here for people like me who are new to all this. It helps!

Bill


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## Lovlkn

That's what makes this forum so great!

People helping people get through this thyroid journey~


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## TiredBill

Is 6 weeks the typical re-evaluation timeframe for dosing increases?

What parameters should be used to decide optimal dose?

The only labs I'll only have are FT4 and TSH.

With a lab range of FT4 of 0.8-1.5 do I hope for something like 1.3?

With a TSH of ??? with a range of 0.35-4.00?

How do you know you've nailed it?

Bill


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## joplin1975

So, ignore TSH for now. You already know it's elevated. TSH tends to be the last thing to change. Don't worry about it too much.

Get your free t4 to 1.15. That's 50% of the range. See how you feel. If you are still fatigued, try increasing your dose of Levo until your free t4 gets to about 1.3...not much higher than that.

If at that point you still feel crummy, ask - or, demand - a free t3 test. Free t3 can be an expensive test and some times insurance companies won't pay for it. Even more often than that, doctors don't understand the importance.

But, if your free t4 get some where between 1.15 - 1.3 and you feel like a new person, then you probably don't have to fight for that free t3 test. It's reasonable to assume you don't have a conversion issue.

And, yes! Six weeks is the normal length of time between dose changes.


----------



## TiredBill

joplin1975 said:


> So, ignore TSH for now. You already know it's elevated. TSH tends to be the last thing to change. Don't worry about it too much.
> 
> Get your free t4 to 1.15. That's 50% of the range. See how you feel. If you are still fatigued, try increasing your dose of Levo until your free t4 gets to about 1.3...not much higher than that.
> 
> If at that point you still feel crummy, ask - or, demand - a free t3 test. Free t3 can be an expensive test and some times insurance companies won't pay for it. Even more often than that, doctors don't understand the importance.
> 
> But, if your free t4 get some where between 1.15 - 1.3 and you feel like a new person, then you probably don't have to fight for that free t3 test. It's reasonable to assume you don't have a conversion issue.
> 
> And, yes! Six weeks is the normal length of time between dose changes.


OK, good.

Based on earlier advice here I was thinking about an FT4 at 1.3 (at max) was about the upside goal.

I understand the most important consideration is how I feel. Thanks for confirming.

As to the FT3, I've requested it in the past and my Endo said: "It isn't part of traditional medicine."

At which point I could not suppress an incredulous: What???

My guess (based on the almost immediate feeling of the Levothyroxine) is that I'm not going to have problems with conversion issues. But I'll keep it in mind that if I get to target ranges and don't feel improved that I'll push for the FT3.

Again, much thanks for your guidance.

Off to coach a bunch of 12-year-old boys in Lacrosse in our opening day practice of the season. Do I wish I had a wee-tad more energy? You know I do. Time to push through.

Best,

Bill


----------



## TiredBill

Quick update. I saw my Endocrinologist today.

He wanted to go very incrementally with 62.5 (doing 50 one day and 75 the next).

I leaned on him and we got to 75 daily with a test in 4 weeks. I'm trying to be patient, but I have my limits 

Thank you all. Tonight I'll take my first dose of 75 mcgs.

Bill


----------



## Lovlkn

Bill -

I like that kind of CAN DO attitude when dialing in med's. I made a ton of dose tweaks when dialing in my set dose, which I have been on since 2010. Mind you, my thyroid was removed 12/10/2004 -

How about editing your signature to include your last lab's with ranges medication and dosage.

Click on your log in name, Profile, edit profile and on the left is signature.


----------



## TiredBill

Lovlkn said:


> Bill -
> 
> I like that kind of CAN DO attitude when dialing in med's. I made a ton of dose tweaks when dialing in my set dose, which I have been on since 2010. Mind you, my thyroid was removed 12/10/2004 -
> 
> How about editing your signature to include your last lab's with ranges medication and dosage.
> 
> Click on your log in name, Profile, edit profile and on the left is signature.


Hey Lovlkn, one thing I'm aware of about myself is that I can have a "persuasive personality" (read that as you will ).

Strangest thing is the day I started my initial dose of Levothyroxine (50 mcgs) I was hit with the flu. Last Monday, the night I bumped the dose to 75 mcgs, I got hit with the stomach flu.

I realize this is pure coincidence (and that there is no causal relationship) but being keen to feel any effects it was strange to be so sick that I took to bed. I rarely get sick, and twice in one season? Never.

But both times I could feel the positive effects through the illness. I keep reading it takes days or weeks to feel Levothyroxine, but I either metabolize this stuff with great efficiency or am very prone to the powers of suggestion.

Short answer: I'm feeling a surge of energy. Just what I needed. Saturday I did a Lacrosse coaching clinic (and felt great) and Sunday I spent the whole day gardening and doing yard-work (much of it taking care of things I'd hoped to get to previously, but had deferred because of limited energy).

I actually had to borrow two "green bins" from different neighbors because I'd stuffed my three yard-waste trash cans to the brim.

What a difference!

Bill


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## joplin1975

YAY!


----------



## jenny v

That's great news! But remember not to push yourself too much in the beginning--a lot of times we feel great, do way more than we're used to, then pay for it a few days later. Your body has to get used to the new dose and process it accordingly.


----------



## Lovlkn

Yahoo! - It's great to feel the energy surge. My life - even today - the surge is usually due to weather -the sunnier out it is - the better overall I feel. Mind you, I do supplement 5K IU daily so it's not the vitamin D I get.

Glad to hear you are feeling the good's that unfortunately go along with the bad's of Thyroid disease.


----------



## TiredBill

jenny v said:


> That's great news! But remember not to push yourself too much in the beginning--a lot of times we feel great, do way more than we're used to, then pay for it a few days later. Your body has to get used to the new dose and process it accordingly.


For better or worse, I spent the first 3 days of the new dose on near-total bed rest (due to stomach flu). Day 4 was taken very easy. Day 5 I was up moving (but not over-doing).

It was Day 6 that I went gang-busters.

Days 7 & 8 (today) have been rain-days, so I'm doing mental work indoors.

I'm assuming my experience is typical? That when one feels fatigued due to low T4 and one gets Levothyroxine one gets a significant boost?

I'm still such a babe-in-the-woods, but the thyroid meds are having an effect.

Bill


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## joplin1975

It sort of depends on how low you thyroid hormones are, how well your body processes things, etc etc etc.

Some people feel a semi-immediate burst of energy while others feel incremental changes over a longer period of time.

Don't be surprised if you have a few (or more) days when you feel like you are back to square one. It'll all shake out in the end, but it just takes a while.


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## TiredBill

joplin1975 said:


> It sort of depends on how low you thyroid hormones are, how well your body processes things, etc etc etc.
> 
> Some people feel a semi-immediate burst of energy while others feel incremental changes over a longer period of time.
> 
> Don't be surprised if you have a few (or more) days when you feel like you are back to square one. It'll all shake out in the end, but it just takes a while.


I seem to be one who feels the Levothyroxine immediately. I felt the very first doses initially. I also felt the difference after increasing this time.

Are you saying that one can have a fall back in symptom relief (such as loss of energy) after an initial surge? This is common?

If so, one keeps bumping the dose for a while? And ultimately there is "stability"?

Bill (who is having inner-conflict with the impatient side of his nature )


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## joplin1975

Hahaha!

Yes, after the initial surge, you can (and many people do!) have a bit of a set back. Or, at least, it feels that way.

What usually happens is suddenly people feel normal...or closer to normal...and you get up off the couch or outta bed and go, go, go, go. Because, let's face it, those of us with thyroid disorders know that energy is in short supply so if you have it, you want to accomplish things.

The problem is you aren't (likely) at the optimal dose right now, so despite how you might feel initially, its well within the realm of possibilities that you'll burn through that extra t4 and start feeling fatigued again (that's why Jenny suggested you take it easy and ramp up activity slowly).

That's the bad news. Well, that and that things take time. The good news is thing DO regulate over time. One of the many reasons you really should wait six weeks in between dose changes and bloodwork is that you are trying to get a longer-term picture of how you feel and how you body is responding, as opposed to taking a quick "snapshot" of time.


----------



## TiredBill

joplin1975 said:


> Hahaha!
> 
> Yes, after the initial surge, you can (and many people do!) have a bit of a set back. Or, at least, it feels that way.
> 
> What usually happens is suddenly people feel normal...or closer to normal...and you get up off the couch or outta bed and go, go, go, go. Because, let's face it, those of us with thyroid disorders know that energy is in short supply so if you have it, you want to accomplish things.
> 
> The problem is you aren't (likely) at the optimal dose right now, so despite how you might feel initially, its well within the realm of possibilities that you'll burn through that extra t4 and start feeling fatigued again (that's why Jenny suggested you take it easy and ramp up activity slowly).
> 
> That's the bad news. Well, that and that things take time. The good news is thing DO regulate over time. One of the many reasons you really should wait six weeks in between dose changes and bloodwork is that you are trying to get a longer-term picture of how you feel and how you body is responding, as opposed to taking a quick "snapshot" of time.


Is it "correct" then, to think of this T4 as a limited pool of resources that gets used up upon exertion? So a "lazy" day would conserve T4, where an especially active day will burn up the supply?

If so, oh dear. I've been "energy rationing" for so long that I've been feeling greedy.

Bill


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## joplin1975

Yes, I think that analogy works.

T4 is a "storage" molecule. When your body needs energy and such, it converts T4 into T3 (via the liver) and uses it for metabolism.

I like to think of it as having a freezer full of leftovers. With your "run of the mill" hypothyroid, you don't have any food in the freezer so you are constantly hungry (or, in this case, tired).

It makes sense to load the freezer full of leftovers, as a first step. You've been hungry for so long that you are probably having a full out binge all that food. The problem is the freeze only gets filled every week (again, this is an analogy) and you didn't order enough food. So while you might be stuffed now, by Saturday night, you might be hungry again.

Eventually you learn how much food to order and how to "budget" that food over the course of the week.

Now, people who are bad converters usually have plenty of leftovers in the freezer. They just don't know how to defrost and cook the food. Which is a whole 'nother conversation.


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## TiredBill

I hate to play to the stereotype, but after a burst of energy last weekend (and perhaps overdoing on Sunday?), the last few days saw a "crash."

This has been hard emotionally. Compounded by the fact that I'd let those in my support system know how well I was feeling over the weekend. Only to feel like a zombie days later.

I'm feeling like the "boy who cries wolf" and that's taking a toll on my loved ones (and me).

Today is a little better. I'd love some stable energy.

Bill


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## joplin1975

Stay present. If you feel good, then you feel good. If you feel poorly, then you feel poorly. This is not something you can fix quickly or easily.

It's absolutely hard because no one can "see" what's wrong with you, but you aren't crying wolf. This is just part of the [very slow, very frustrating] process.


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## TiredBill

On a positive note, in the ebb and flow of my ever changing energy supply, I'm having a spectacular day 

I promise not to go crazy.

Bill


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## Lovlkn

hugs4


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## TiredBill

So I'll be heading out to get some lab work soon to monitor the efficacy of the bump to 75 mcgs (from my initial 50).

It has been only 4 weeks (not 6), but that's what the doctor ordered after I pressed him to 75 (instead of 62.5 as he initially wanted to do).

I'll be back soon with results and will solicit input. 75 mcgs has been helpful. No bumps in the road.

I will only have TSH and FT4 test results, because those others "have no place in traditional Western medicine" don't you know 

(less tired) Bill


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## TiredBill

OK, strange results (and I appreciate any input as I need to contact my Endocrinologist tomorrow).

I had 2 FT4 tests *prior* to starting Levothyroxine. The first was 1.0, the second was 0.8 (reference 0.8-1.5 ng/dL).

After 6 weeks at a dose of 50 mcgs I was back to 1.0 ng/dL.

So the dose was increased to 75 mcgs 4 weeks ago. Today's results for FT4 were 1.0 ng/dL. No movement at all. What the heck is going on???

Please advise.

Bill

Update: My TSH, which had been 3.29, 3.22, and 3.52 *prior* to treatment , and had gone down to 2.35 after 50 mcgs, is now at 1.37 (ref. 0.35-4.0) after 4 weeks ar 75 mcgs.

My big concern is my Endocrinologist will focus on the TSH, not on the low FT4.

Help me!


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## joplin1975

When my TSH was super higher (121) and my free t4 was non-existent, I changed doses and got blood work done every four weeks. My initial changes were dramatic, but as things improved, I often saw my free t4 plateau for a month or two...if I recall correctly, I think there were a couple of months when it actually dropped a teeny bit, too.

So, I think the answer I see that this whole thyroid thing isn't a straight line. You get little ups and downs and stagnations throughoutthe process. Combine that with the fact that you are likely doing about more because you aren't as tired (meaning you are using more t4) AND that you are at four, not six-eight weeks, and I think your results aren't terribly unexpected.

If you still feel fatigued, I'd certainly push your doctor to let you try 100. Tell him/her that you are not near being hyper and that your symptoms still demand it. If s/he isn't inclined to make that change, ask to have labs drawn again in four weeks.


----------



## TiredBill

joplin1975 said:


> When my TSH was super higher (121) and my free t4 was non-existent, I changed doses and got blood work done every four weeks. My initial changes were dramatic, but as things improved, I often saw my free t4 plateau for a month or two...if I recall correctly, I think there were a couple of months when it actually dropped a teeny bit, too.
> 
> So, I think the answer I see that this whole thyroid thing isn't a straight line. You get little ups and downs and stagnations throughoutthe process. Combine that with the fact that you are likely doing about more because you aren't as tired (meaning you are using more t4) AND that you are at four, not six-eight weeks, and I think your results aren't terribly unexpected.
> 
> If you still feel fatigued, I'd certainly push your doctor to let you try 100. Tell him/her that you are not near being hyper and that your symptoms still demand it. If s/he isn't inclined to make that change, ask to have labs drawn again in four weeks.


Hmm. Definitely doing more.

The garden, enriched by the recent rains (after years of drought) is looking good, but has required much tending and weeding, on top of some previously deferred maintenance.

My boys lacrosse team (I'm the Coach) had their opening weekend and had two big wins. I've been able to run around more with the 12-year-olds without feeling I'd keel over.

So feeling better. Doing more. Makes sense.

I do think there is continued room for improvement. And I still have fatigue. Just less.

Doctor conference will only be by email or (maybe) phone this time.

I'll keep you posted.

Bill


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## TiredBill

Moving to 82.5 mcgs. My powers of persuasion were reduced on the phone.

Darn phones 

Is this reasonable? Doc says increases are "not linear" when I mention going up 25 (50 to 75) was no problem.

Why do I feel like a junky who just wants his fix?

Bill


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## joplin1975

Actually, yeah, that's pretty darn reasonable. I mean, again, this was the four week mark. If these were results from the eight week mark, I might have a different reaction...but for four weeks? That's a pretty decent compromise.

When will you get your blood work tested next?


----------



## TiredBill

joplin1975 said:


> Actually, yeah, that's pretty darn reasonable. I mean, again, this was the four week mark. If these were results from the eight week mark, I might have a different reaction...but for four weeks? That's a pretty decent compromise.
> 
> When will you get your blood work tested next?


Re-test in 6 weeks this time.

The Endocrinologist said he wasn't really happy increasing the dose.

So I told him some strange lady on the internet said my FT4 should be somewhere from half to 3/4s of range, so he said "well in that case" 

OK. I lied about that last part, I said I hoped to feel how I felt in this optimal range and feel I still have room for improvement.

Bill


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## joplin1975

Hahahahaha!!! :-D

I think we would all love docs who subscribe to our (with our = this message board) view of how thyroid issues should be treated. But, sometimes, the doctors who might not like what we are suggesting but who are willing to listen after some pressure are better than nothing!

I think you are on the right path.


----------



## TiredBill

joplin1975 said:


> Hahahahaha!!! :-D
> 
> I think we would all love docs who subscribe to our (with our = this message board) view of how thyroid issues should be treated. But, sometimes, the doctors who might not like what we are suggesting but who are willing to listen after some pressure are better than nothing!
> 
> I think you are on the right path.


OK, good. I'm glad to know I didn't fold too early.

What about the "non-linear" argument of his (meaning as you go up that less is more). Is he correct on that? So going from 50 to 75 is a less significant jump than 75-100, despite being a smaller percentile increase in the latter case?

Bill


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## joplin1975

I've honestly never heard that argument. My knee jerk reaction was that it didn't make sense...but after some thought, I'm wondering if he is trying to make the argument that more t4 = more t4 in storage (in your body) so it's easier to go hyper?


----------



## TiredBill

joplin1975 said:


> I've honestly never heard that argument. My knee jerk reaction was that it didn't make sense...but after some thought, I'm wondering if he is trying to make the argument that more t4 = more t4 in storage (in your body) so it's easier to go hyper?


I have no idea (honestly) what he was getting at. I'm no expert in dose management (obviously) but I have looked at the symptoms of going hyperthyroid and am not feeling a single one of them in any degree.

I'm also not seeing any budging in the FT4 scores (although the TSH trendline is steeply down) and while I'm definitely feeling better (and grateful for it) my inner-intelligence/body-awareness tells me there is still a good deal up upside for feeling better yet.

It seems to me that my doctor, like many, seems fine with "normal" (with me remaining not fully recovered) rather than shooting for "optimal."

I'm still not sure of either the smartest way or the medically standard way of deciding when the dose is optimal and when it is time to quit increasing.

I know the 1/2 to 3/4 range on the FT4 is one measure in this community (and I'm not there yet).

I suppose the "how do you feel?" test must be pretty critical, and there I'm feeling the answer is "on the right track, but there is room to improve."

Taking to heart what I read and advice here I comprehend that going hyperthyroid isn't a good thing, but how to find the line between optimal and going over still seems like an elusive goal based simply on objective measures.

I can't say how much I'm appreciating the support.

Bill


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## joplin1975

> I suppose the "how do you feel?" test must be pretty critical, and there I'm feeling the answer is "on the right track, but there is room to improve."


 Yes, THIS.

And I'll tell you that I am going into my 5th year of being on thyroid meds. I feel great -- I'm thriving. But I have days when I wonder if I am, in fact, at optimal levels. I think I'm close, if I'm not there. And then I also have to wonder how I'd feel if I have a normal functioning thyroid (I'm really active, so it seems to make sense that I'd feel tired, even if I was totally normal with all things thyroid). Add in that I'm getting older and I know that has to have some impact and, well, it's clear as mud.

But I also know that me and any smell of hyperthyroid do not get along well (or, to quote my husband "You acted like a meth addict") and so my optimal labs might not be someone else's optimal labs.

The fine-tuning part of this process really does demand that you listen to your gut instincts.


----------



## TiredBill

joplin1975 said:


> Yes, THIS.
> 
> And I'll tell you that I am going into my 5th year of being on thyroid meds. I feel great -- I'm thriving. But I have days when I wonder if I am, in fact, at optimal levels. I think I'm close, if I'm not there. And then I also have to wonder how I'd feel if I have a normal functioning thyroid (I'm really active, so it seems to make sense that I'd feel tired, even if I was totally normal with all things thyroid). Add in that I'm getting older and I know that has to have some impact and, well, it's clear as mud.
> 
> But I also know that me and any smell of hyperthyroid do not get along well (or, to quote my husband "You acted like a meth addict") and so my optimal labs might not be someone else's optimal labs.
> 
> The fine-tuning part of this process really does demand that you listen to your gut instincts.


What does a whiff of being hyperthyroid feel like for you? How does it manifest itself? What is typical for others? I looked at "symptoms" online, and feel none.

BTW, started by new does last night (with required some fancy razor-blade skills using my last few 50 mcg tablets). I'm sure it is coincidental, but I'm having another spectacular day. These have been extremely rare (non-existent) for a long time, so color me happy. I've got a spring in my step.

And while I was already at the Medical Center picking up my new meds, I thought (since I was feeling really well) that I'd have them check my vitals. I'd had a few scary BP checks in recent months mixed with some that got me with-in what they call "high-normal" (but that I know are not good for health) and today's results were 121/76. Not bad!

I've also gone from a shocking 248 lbs at my highest (prior to treatment) to 236 lbs today. Still too high for my taste, but moving the right way with no alteration in (healthy) eating habits, I'm just moving more (where I wasn't really capable of moving at all).

Bill


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## joplin1975

Eh...anything from:

-anxiety

-diarrhea/indigestion/gas

-inability to focus

-insomnia (I was sleeping maaaaaaaaaaybe 2-3 hours a night and regularly I get 8 hours)

-shaking/tremors

-sweating profusely

-heartburn

-an overall feeling of being jittery or "revved up"

-muscle weakness (I couldn't pick up a hay bale)

-headaches


----------



## TiredBill

joplin1975 said:


> Eh...anything from:
> -anxiety
> -diarrhea/indigestion/gas
> -inability to focus
> -insomnia (I was sleeping maaaaaaaaaaybe 2-3 hours a night and regularly I get 8 hours)
> -shaking/tremors
> -sweating profusely
> -heartburn
> -an overall feeling of being jittery or "revved up"
> -muscle weakness (I couldn't pick up a hay bale)
> -headaches


Gotya.

At the moment I'm feeling calm, focused, sleeping better, steady, cool, no issues with digestion, more energetic, and strong. And impatient 

Bill


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## Lovlkn

Bill,

I have to imagine you have quite alot of refills on your multiple prescribed T4 med's. Fill them all - The pharmacy will fill any valid prescription regardless of dosage, even if the same medication. Your insurance may not so be prepared to pay cash.

You are extremely hypo based on the most recent and prior labs.

The more active you are, the more thyroid hormone you may need. To dial in your dose you will need labs at least every 6 weeks. As long as your doctor prescribes for you - keep them but be prepared to shop for another as your endo is TSH focused and you will suffer for that. You cannot change their mind - if you speak up enough they may prescribe to shut you up. Been there - done that.

Consider spending the $65 and get all the tests needed to take a look at your free thyroid hormone.



> https://www.healthonelabs.com/tests_offer/buytest/220/


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## TiredBill

Lovlkn said:


> Bill,
> 
> I have to imagine you have quite alot of refills on your multiple prescribed T4 med's. Fill them all - The pharmacy will fill any valid prescription regardless of dosage, even if the same medication. Your insurance may not so be prepared to pay cash.
> 
> You are extremely hypo based on the most recent and prior labs.
> 
> The more active you are, the more thyroid hormone you may need. To dial in your dose you will need labs at least every 6 weeks. As long as your doctor prescribes for you - keep them but be prepared to shop for another as your endo is TSH focused and you will suffer for that. You cannot change their mind - if you speak up enough they may prescribe to shut you up. Been there - done that.
> 
> Consider spending the $65 and get all the tests needed to take a look at your free thyroid hormone.


With my health group there are not multiple re-fills, but the Endo is willing to re-test again in 6 weeks and he knows already that I will be pushing for an increase then.

He is (decidedly) a TSH oriented Endocrinologist. He will also be retiring at the end of the year, so I will need a new doctor.

Complicating all this is that my Medical Group also has a Chief Endocrinologist (mercifully also retiring soon) who was staunchly against my getting treatment for testosterone replacement (my being 6 points out of 300 over their arbitrary limits). I had a disastrous appointment with this Chief Endocrinologist who treated me like rubbish when I was beyond desperate, who refused to take a history, who refused to look at or discuss the medical studies I had that supported therapy in my case, and who threw me out of his office like I was a drug seeker who'd seen too many ads for testosterone on TV. Never have I seen such a cruel physician in my entire life, and I left his office in tears.

My current Endo (knowing he would face bureaucratic heat) had to buck his boss (the Chief Endocrinologist) and (after some wavering) acted to save me.

So it is complicated. I'd like a different meeting of the minds on the thyroid, but feel gratitude that I'm getting the necessary TRT. And I don't like feeling the latter is in doubt or threatened. So I'll want his help in any hand-off to another doctor with-in the system.

I think as long as I know I'm acting in my own best interest that I can get the current Endo to play along. Not perhaps as aggressively as I'd prefer, but to seek another doctor would be complicated by the risk to my TRT. I'm positive that both these things, plus treating sleep apnea (and taking Vitamin D, B12, and a multi) are acting in conjunction to improve my well-being.

You all are giving me confidence that I can self-advocate for what I need on the Thyroid front.

My body loves the Levothyroxine. This I know. I do not believe I have any conversion issues (as I feel the effects straight away).

I'll keep pressing forward. And I'll keep relying on the wisdom and kindness of you all here.

I'm poised to be a success story. That's a big change from the despair I felt 6 months ago.

Bill


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## TiredBill

So checking in with an update and a few questions.

I wish I'd been able to convince my Endo to got to 100 instead of 88.2 on the Levothyroxine.

I'm trapped in the cycle of feeling better, doing more, burning out supplies, and paying for it a little.

The trend line is way up. I was completely knackered six months ago, and now I'm motivated to be active. But I think the dose of Levothyroxine is still too low.

On a couple of occasions (two Lacrosse game days where I serve as the Coach for a youth team) I've popped a little more (25 mcgs) in the morning after taking regular dose of 88.2 at bedtime. Is this horrible. I feel like I needed it.

Also, do physicians typically accept the idea patients who are more active burn off more T4? Or will my very traditional Endo roll his eyes if I make this a basis of appeal?

I'm thinking of asking for a 4-week re-test (as we did the previous time) instead of the 6-week re-test scheduled.

I want more.

Bill


----------



## Lovlkn

> On a couple of occasions (two Lacrosse game days where I serve as the Coach for a youth team) I've popped a little more (25 mcgs) in the morning after taking regular dose of 88.2 at bedtime. Is this horrible. I feel like I needed it.


No - I doubt however that you would "feel it" due to the long 1/2 life of levothyroxine. If you are talking T3 aka Cytomel, you definitely would feel it that day.

I self dosed early and switched doctors often and would be honest with what I was actually ingesting which they would then refill the higher dosage. Just info to think about while you try to find your perfect dose.

You really need to see what your FT-3 is doing - FT-4 and FT-3 may react differently to T4 hormone increases and in your case since your FT-4 likes to stay the same, it would be interesting to see your FT-3 result.


----------



## TiredBill

Lovlkn said:


> No - I doubt however that you would "feel it" due to the long 1/2 life of levothyroxine. If you are talking T3 aka Cytomel, you definitely would feel it that day.
> 
> I self dosed early and switched doctors often and would be honest with what I was actually ingesting which they would then refill the higher dosage. Just info to think about while you try to find your perfect dose.
> 
> You really need to see what your FT-3 is doing - FT-4 and FT-3 may react differently to T4 hormone increases and in your case since your FT-4 likes to stay the same, it would be interesting to see your FT-3 result.


Do some people just not have their FT4 numbers go up? TSH is on a downward trend line. FT4 has not budged.

I do feel like I'm converting this Levothyroxine well. I take it, and I feel it. I just want more and need to have a line of reasoning that will convince a TSH/T4 oriented Endocrinologist who would seemingly prefer to stop before we reach the optimal dose to keep going.

Thoughts?

Bill


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## joplin1975

It really depends on the endo.

Some give more weight to symptoms while others get really hung up on labs (without knowing how to properly read labs).

Labs in 4 weeks seems reasonable. If your endo really pushes back, definitely see about getting a second opinion.


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## Lovlkn

> Do some people just not have their FT4 numbers go up? TSH is on a downward trend line. FT4 has not budged.


Honestly, without the FT-3 it's hard to comment. I would bet that your FT-3 is changing if your FT-4 is not. Makes no sense that increasing levothyroxine would not make your FT-4 go up.

There are alot of things that can interfere with absorption, also - if your TSH is changing maybe you are simply converting more to FT-3? Without the FT-3 lab being run along with your FT-4 lab you won't know that to be the case.

My doc tells me that the Free labs change during the day - I find that interesting because my FT-4 labs the last 2 years ( 4 tests) have been exact. OK Doc - whatever you say.

Do you take your levothyroxine with a full 8oz glass of water?

Are the lab ranges the same?

Are the labs drawn at the exact time of day each time?

Are you taking your levothyroxine the same time everyday?

Have you changed any supplements you take?

Activity levels can affect it as you already mentioned your activity has increased.


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## TiredBill

Lovlkn said:


> Honestly, without the FT-3 it's hard to comment. I would bet that your FT-3 is changing if your FT-4 is not. Makes no sense that increasing levothyroxine would not make your FT-4 go up.
> 
> There are alot of things that can interfere with absorption, also - if your TSH is changing maybe you are simply converting more to FT-3? Without the FT-3 lab being run along with your FT-4 lab you won't know that to be the case.
> 
> My doc tells me that the Free labs change during the day - I find that interesting because my FT-4 labs the last 2 years ( 4 tests) have been exact. OK Doc - whatever you say.
> 
> Do you take your levothyroxine with a full 8oz glass of water?
> 
> Are the lab ranges the same?
> 
> Are the labs drawn at the exact time of day each time?
> 
> Are you taking your levothyroxine the same time everyday?
> 
> Have you changed any supplements you take?
> 
> Activity levels can affect it as you already mentioned your activity has increased.


I'd suspect I am making T3 very efficiently. I feel effects from the Levothyroxine very quickly. On starting, I felt it almost right way, despite being told it could take weeks. The increased doses I feel equally quickly. I felt the Levothyroxine so quickly that I wondered if I was just prone to the powers of "suggestion," but the effects have been on-going.

I wish I had confirmatory FT3 tests, but (as I said earlier) when asked my Endocrinologist said the FT3 test had no place in traditional medicine. Grrr.

He is retiring at year's end. I need his assistance to transition to another doctor in our system who will support my TRT. So I need to work with him.

To answer questions:

1) I take the pill with water (and stay well-hydrated otherwise.

2) The lab ranges are the same (same lab).

3) All the blood draws have been close to the same time (about 10 am).

4) I'm taking the levothyroxine before bed. That has generally been pretty consistent (with a few nights being later).

5) I take a multivitamin, B12, and Vitamin D3 about 9-10 am. No other meds save TRT.

6) Activity level is rising. Considerably. Feeling much better. I had been almost incapacitated. So this is very encouraging. But I do find myself "hitting the wall" where the juice seems to run out. And if I push past that, I pay the next day.

The TSH is in a trendline sloping downwards. FT4 has not budged at all since starting treatment.

Bill


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## TiredBill

In the ongoing (and somewhat perplexing) saga of trying to find the right dose of Levothyroxine, I got new test results today that leave me scratching my head.

I've just come off of an increase to 88.2 mcgs for 6 weeks, but my T4 numbers still have not budged. Today's test was 1.0 (reference 0.8-1.5 ng/dL).

I had 2 FT4 tests to starting Levothyroxine. The first was 1.0, the second was 0.8 . After 6 weeks at a dose of 50 I was back to 1.0 ng/dL. Then 4 weeks at 75 mcgs and FT4 was at 1.0. Now 1.0.

No movement at all in FT4

TSH actually increased from a low of 1.37 six weeks ago to 2.49 (reference 0.35 - 4.00 mcIU/mL) after 6 weeks increaced to 88.2 mcgs.

My TSH, which had been at 3.29, 3.22, and 3.52 *prior* to treatment, went down to 2.35 after 6 weeks at 50 mcgs, went down to 1.37 (ref. 0.35-4.0) after 4 weeks at 75 mcgs. Now after 6 weeks at 88.2 it is up to 2.49.

What is going on?

Bill


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## joplin1975

I...don't know what's going on. I appreciate that's not helpful. Sorry.

Does your doctor want to increase your meds? I think that's your best bet at this point.


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## TiredBill

joplin1975 said:


> I...don't know what's going on. I appreciate that's not helpful. Sorry.
> 
> Does your doctor want to increase your meds? I think that's your best bet at this point.


I want to increase my Levothyroxine meds. I was not thrilled by only going to 88 (vs 100 as my Endo insisted) since my body is screaming for this stuff, but thought I'd check in with my cool-headed gurus here.

Life is getting better. I just don't feel like I'm at an optimal dose yet. Seems like that's what the labs say too?

Bill


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## joplin1975

Yup, you need an increase.

I know when I was on 137mcgs my TSH dropped from 43.21 to 7.88 so my doc made me stay on 137 for another four weeks just in case it dropped more...and then next test my TSH rose to 8.38. So it's (again) not a straight trajectory.

I have to imagine you'll feel so much better if you can get that free t4 number up!


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## TiredBill

joplin1975 said:


> Yup, you need an increase.
> 
> I know when I was on 137mcgs my TSH dropped from 43.21 to 7.88 so my doc made me stay on 137 for another four weeks just in case it dropped more...and then next test my TSH rose to 8.38. So it's (again) not a straight trajectory.
> 
> I have to imagine you'll feel so much better if you can get that free t4 number up!


Phone appt for this afternoon. I "know" Endo will want to limit increase to 100 mcgs.

I'll push for a 4 week re-test if that's the case. I'd like to see the FT4 numbers move.

Thanks for being my support back-up!

I can't tell you how much I've appreciated not going this alone.

Bill


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## TiredBill

Moving to up to 100 mcgs of Levothyroxine tomorrow, for 6 weeks.

Not a very interesting post, but-in case of brain-fog-this thread acts as a reminder for me 

Bill


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## Sabrina

I am new so my input may be off, so forgive me. 

I read through quite a bit, see you started at .8 FT4 (me too and it sucked). Doesn't look like you have FT3 labs (these are so helpful! That is, after all, the active thyroid hormone)

My FT4 dropped recently without a change in dose. I strongly suspect my body was working hard to convert more T3 (and at the same time i was also making reverse T3). I guess I'm saying it's possible to have FT4 levels be affected by how your body is using it. Also, I find it takes six weeks before a dose change shows full effect in my blood.

I was actually going hyper at one point, my FT4 test one week was 1.6 (.8-1.8) and the next week I was in full hyper symptoms, had to skip a day and got labs 30 hours after my last dose...1.2! Because I feel that taking my dose affects my FT4 number and how I feel, I personally like labs mid day after taking my dose early that morning. I feel like this is giving me the number I have available to me mid day after normal dosing. I could be wrong, but if I am I don't get why I went from 1.6 (labs eight hours after dose while feeling great) to 1.2 (thirty hours after dose feeling hyper). So the way my brain works with this one (may be wrong) is that changes in timing of labs may affect it too. (My FT3 was exactly the same both times.)

Anyway, being someone who has T3 conversion issues and now also RT3, these two labs are vital to me. To me, T4 is the food you have in the freezer that could be used at some point to make a meal, but T3 is the stuff that's thawed and otherwise ready right now to use.


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## Lovlkn

Bill-

Do you live in a state where you can order your own labs?

If so - do yourself a favor and spend the $64.95 and get TSH, FT-4 and FT-3 so you know for sure what's happening.

https://www.healthonelabs.com/tests_offer/buytest/220/

My experience - if FT-4 isn't responding the way you would expect then it's likely the FT-3 is moving.


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## TiredBill

@ Sabina, thank you for reading though my story and sharing your experiences. I appreciate it. I actually had two T4 tests prior to starting treatment. The first was 1.0 the second was 0.8.

Subsequent T4 tests after doses of 50, 75, and 88 mcgs of Levothyroxine have all been 1.0.

The good news is I'm increasingly feeling more energetic and am being more active. Still, some bad days (and a few very bad days) interspersed. So not a straight linear progression. I still need to be mindful not to "over-do."

During my last phone consult with my Endocrinologist, I asked about the idea that my T4 wasn't moving because I am increasingly active and "burning it up." He guffawed in a way that I understood he feels the idea is preposterous.

But it sure feels to me that's how it works. I feel I have a supply of Levothorixe-linked energy that my body taps easily, but uses up with exertion. I've felt the new doses (including the initial one and last Friday's increase) almost immediately. Much faster than almost all the literature suggests is typical.

I have also tried to do blood draws at the same time of day. In my case, that is 10 am. I'm taking the Levothyroxine at night.

@Lovlkn

I'm in CA, so I could pay to have labs drawn. I'd be more inclined to do so if I had a physician that put any store in the FT3 results, but I do not. Even if I had the FT3 numbers I don't think it would affect the steady progression of increased Levothyroxine doses.

Since the Levothyroxine is "working" (despite the incremental nature of the improvement rubbing up against my impatience to feel better sooner than later) I'm OK with using how I feel (improving but with room for improvement) be my guidepost.

If things were not going well, I'd take another tact. But Levothyroxine is working for me. I just hope we find the optimal dose as soon as safely possible.

Thanks as always for the support!

Bill


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## Lovlkn

> I'm in CA, so I could pay to have labs drawn. I'd be more inclined to do so if I had a physician that put any store in the FT3 results, but I do not. Even if I had the FT3 numbers I don't think it would affect the steady progression of increased Levothyroxine doses.


Small price to pay - to see what's really going on, don't you think?

If it were me, I would want to know, especially because your FT-4 is not doing what is should be doing.

I'm a lab junkie!


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