Please share your Thyroid wisdom

[maize]

My TSH came back elevated at my recent physical. I'm unclear on how much of a concern this is.

[Katy]

Anything over 3 with symptoms is treatable, depending on what guideline your doctor follows. You’ll probably go on thyroid meds. It’s a cheap generic. You may find you sleep better, lose weight, and have less headaches. 

[Pawz4me]

Around here you'd have a fight to get a conventional PCP to medicate for those numbers unless you're having significant symptoms beyond difficulty losing weight (that one they tend to discount because it's a "symptom" so many people with perfect thyroid numbers have).

If you can get a provider to agree to medicate--lots of people tout the natural desicated thyroid stuff like Armour and NaturThroid, but plain old levothyroxine has always worked wonderfully for me. I call it my Fountain of Youth in a bottle because I felt like I was on death's doorstep when I started it, and in a few weeks I felt alive again.

[Dmmetler]

In all seriousness, see an encocrinologist. Ideally one who will do an antibody panel as well. PCP’s tend to undermedicate, and if you have Hashimoto’s, as many women with hypothyroidism do, a small dose of Levothyroxine to keep that TSH down can keep it from spiraling into an autoimmune cascade that starts, but doesn’t end, with killing your thyroid.

[prairiewindmomma]

You need to have the antibodies tests done—TPO, etc. If you have Hashimoto’s, your numbers need to be a lot lower to suppress the autoimmune aspect of things than if you don’t.

I personally feel awful once my TSH is above 2.5. My happy spot is between 1-2, and closer to 1 than 2.

[gardenmom5]

Ranges include people who are not optimal - you want to know where you are compared to optimal.

Is your Free T4 really in the Normal Range? (Probably Not) (restartmed.com)

I also noticed  you have no free T3.  Is there a reason?   and there are many many suggestions to get Reverse T3 as well, as it can help determine how much is actually getting into your cells.

 

eta: your TSA (pituitary hormone) would definitely be considered hypothyroid.  If untreated/undertreated it can eventually lead to a host of other problems.  And . . . you also would want to do an antibody screen to determine if you have Hashimoto's or not.

Edited December 23, 2022 by gardenmom5

[melbotoast]

I would definitely want to treat at that number. I feel much better adding liothyronine (T3) to my levothyroxine (T4) meds.

T4 is storage, and T3 is the active form.

[maize]

I have several female family members with hashimotos, so that's definitely a consideration.

My PCP did offer to put me on levothyroxine, but I haven't talked to her in person about it--that was just relaid by the medical assistant who called me about my lab results.

I'll look into seeing an endocrinologist.

[gardenmom5]

4 minutes ago, maize said:

I have several female family members with hashimotos, so that's definitely a consideration.

My PCP did offer to put me on levothyroxine, but I haven't talked to her in person about it--that was just relaid by the medical assistant who called me about my lab results.

I'll look into seeing an endocrinologist.

tbh: I'm on a number of thyroid support groups who despise endos because they don't take it as seriously as they should or look at all the numbers they way they should.  so, be aware.

[Jean in Newcastle]

I am one of those people who swears by the natural thyroid pills.  (I like Naturthroid.)  My naturopathic doctor does a better job with my thyroid than my allopathic doctor because he goes for optimum and not just "within range" on numbers. 

[Dmmetler]

2 hours ago, gardenmom5 said:

tbh: I'm on a number of thyroid support groups who despise endos because they don't take it as seriously as they should or look at all the numbers they way they should.  so, be aware.

I have an endo NP, who specializes in endocrine disorders in women. She’s wonderful. I’m now to the point that I prefer specialist NP’s to MD’s because they seem to listen better and take more things seriously.

[gardenmom5]

1 hour ago, Jean in Newcastle said:

I am one of those people who swears by the natural thyroid pills.  (I like Naturthroid.)  My naturopathic doctor does a better job with my thyroid than my allopathic doctor because he goes for optimum and not just "within range" on numbers. 

How is naturthroid?   they've changed the formual on everything.  I started on WP (which I liked, but it was pulled from the market), then switched to Armour (felt horrible every single day).  Now I'm doing T4 and T3.  feel better than I ever did on armour. . .

 

OP - straight levothyroxine/T4 is considered undertreated.  just to be warned.  Some drs are more effective than others, so you will want to do some reviews/asking around for someone who is good at treating hypothyroidism.

here is Stop the thyroid madness's recommended list of labs.

and you can actually order the labs yourself.

[gardenmom5]

2 minutes ago, Dmmetler said:

I have an endo NP, who specializes in endocrine disorders in women. She’s wonderful. I’m now to the point that I prefer specialist NP’s to MD’s because they seem to listen better and take more things seriously.

an Endo NP sounds like a great combination - but not easy to find.  and I'm near Bastyr.

I agree - NPs are generally more helpful for thyroid.

[Jean in Newcastle]

2 minutes ago, gardenmom5 said:

How is naturthroid?   they've changed the formual on everything.  I started on WP (which I liked, but it was pulled from the market), then switched to Armour (felt horrible every single day).  Now I'm doing T4 and T3.  feel better than I ever did on armour. . .

 

OP - straight levothyroxine/T4 is considered undertreated.  just to be warned.  Some drs are more effective than others, so you will want to do some reviews/asking around for someone who is good at treating hypothyroidism.

here is Stop the thyroid madness's recommended list of labs.

and you can actually order the labs yourself.

Occasionally Naturthroid has a recall through the pharmacy. Something about wrong strength. So I guess that someone somewhere is testing it regularly. I personally have had great labs (which include free T3 and reverse T3) with the Naturthroid. I didn’t do as well with the Armour. I used to be on WP.  I have also done compounded thyroid meds as a stop gap but that can be expensive. 

[prairiewindmomma]

3 hours ago, maize said:

I have several female family members with hashimotos, so that's definitely a consideration.

My PCP did offer to put me on levothyroxine, but I haven't talked to her in person about it--that was just relaid by the medical assistant who called me about my lab results.

I'll look into seeing an endocrinologist.

Maize—heads up that if you have a genetic history like that your daughters should have baseline labs run around puberty, and before and after each pregnancy. Any hormonal shifts or serious illnesses can trigger Hashimoto’s, and not having optimal thyroid levels is correlated with pregnancy loss.

[gardenmom5]

23 minutes ago, Jean in Newcastle said:

Occasionally Naturthroid has a recall through the pharmacy. Something about wrong strength. So I guess that someone somewhere is testing it regularly. I personally have had great labs (which include free T3 and reverse T3) with the Naturthroid. I didn’t do as well with the Armour. I used to be on WP.  I have also done compounded thyroid meds as a stop gap but that can be expensive. 

Clark's up in overlake is good for compounding - but it was taken over by, I think, the son.  I would have MTHF compounded there.

[Jean in Newcastle]

12 minutes ago, gardenmom5 said:

Clark's up in overlake is good for compounding - but it was taken over by, I think, the son.  I would have MTHF compounded there.

I go there all the time. My rabbit’s heart meds are compounded there!  

[KSera]

5 hours ago, Dmmetler said:

I have an endo NP, who specializes in endocrine disorders in women. She’s wonderful. I’m now to the point that I prefer specialist NP’s to MD’s because they seem to listen better and take more things seriously.

Are we talking NP=naturopath or NP=Nurse Practitioner?

[Dmmetler]

8 hours ago, KSera said:

Are we talking NP=naturopath or NP=Nurse Practitioner?

Nurse Practitioner. I really lucked out-when I was first diagnosed and nodules found on ultrasound in my GP’s office, she had me terrified about cancer, but the place she referred me to had no appointments for weeks, and then cancelled mine with two day’s notice as “not covered by your insurance”. By that point, I was a total mess, and when I called the insurance company’s referral line, I broke down, and the agent on the line said “let me make a call. I know just who you need to see because I see her”and got me a work in appointment for the next day.  Honestly, she’s probably the single medical professional I see that I trust most.

[Longtime Lurker]

20 hours ago, Pawz4me said:

Around here you'd have a fight to get a conventional PCP to medicate for those numbers unless you're having significant symptoms beyond difficulty losing weight (that one they tend to discount because it's a "symptom" so many people with perfect thyroid numbers have).

If you can get a provider to agree to medicate--lots of people tout the natural desicated thyroid stuff like Armour and NaturThroid, but plain old levothyroxine has always worked wonderfully for me. I call it my Fountain of Youth in a bottle because I felt like I was on death's doorstep when I started it, and in a few weeks I felt alive again.

Same here. I had my thyroid removed in 2018 due to cancer and levothyroxine has worked beautifully.

[MercyA]

15 hours ago, prairiewindmomma said:

Maize—heads up that if you have a genetic history like that your daughters should have baseline labs run around puberty, and before and after each pregnancy. Any hormonal shifts or serious illnesses can trigger Hashimoto’s, and not having optimal thyroid levels is correlated with pregnancy loss.

Yes. After my one and only successful pregnancy, my ob/gyn noticed that I had a goiter and sent me for testing. My TSH was quite high. I started at around 6, got it down to 4, and kept treating until I've kept it around 1.6. I wouldn't want it higher than 2, personally. I have to wonder if taking thyroid meds would have helped with my infertility and breastfeeding problems. 

maize, I take generic levothyroxine and will likely take it the rest of my life. No side effects, no problems. 

I'm glad this was noticed for you! 

[Dmmetler]

34 minutes ago, MercyA said:

Yes. After my one and only successful pregnancy, my ob/gyn noticed that I had a goiter and sent me for testing. My TSH was quite high. I started at around 6, got it down to 4, and kept treating until I've kept it around 1.6. I wouldn't want it higher than 2, personally. I have to wonder if taking thyroid meds would have helped with my infertility and breastfeeding problems. 

maize, I take generic levothyroxine and will likely take it the rest of my life. No side effects, no problems. 

I'm glad this was noticed for you! 

My Endo nurse NP said that she can tell from my chart that I should have been medicated for thyroid for almost 20 years before I was, because my OB history is a red flag. She's willing to bet that had other levels been done, or had been done at slightly different times, that I had a "normal" TSH, but probably nothing else. By the time I was diagnosed, not only was my thyroid almost gone, but my pancreas had also been damaged.  Hearing that was both anger inducing, and, in some ways, a relief. Because it means that L CAN be monitored and that a low dose of synthroid might well be protective. 

 

FWIW, I take synthroid-the generics didn't work well for me, and get it directly from the company due to supply chain issues early in COVID. I'm on a fairly high dose, but at least so far, the T4/T3 conversion seems to work. We've also been able to halt damage to the pancreas and keep my A1C at about 5.5-5.6.

Edited December 24, 2022 by Dmmetler

[melbotoast]

If you end up using synthroid, this is the cheapest way I've found to get it:

https://www.synthroiddeliversprogram.com/

[kokotg]

My NP would definitely treat for that (I try to keep mine under 2)...I've always just done levothyroxine and been fine on it. I've been to endocrinologists a couple of times, but they've found me utterly uninteresting so I just see my regular general practice NP mostly and get labs done twice a year. 

[Brittany1116]

I used Synthroid for 20 years and never had optimal numbers. Putting me in range just made my symptoms shift. I was always ravenous when I took it. I switched to NP thyroid (generic Armor) and finally had improvement. 

[maize]

I'm going to call today and ask about getting a prescription to start with, then look into following up with an endocrinologist. If there's an endocrinologist NP that would be great, we've had positive experiences with NP's in other specialties; they do often seem to take more time and actually listen. It seems to me that a lot of MD specialists are just packing in patients so tightly that there's no time for individual attention.

[Katy]

I like NP's too. I will say to think about tracking your daily diet for a while.  I had elevated thyroid and I eventually (after my number was stabilized with levothyroxin) figured out that I had not only been consuming too little iodine (non-iodized sea salt, lots of cruciferous vegetables that block iodine absorption).  I had a new insurance network that insisted everyone on thyroid meds see an endocrinologist.  I asked him if I could try Iodoral iodine supplements (a very high dose by American standards), knowing that if the problem was autoimmune it would make me worse, not better.  He agreed. I tried it and my numbers improved to better than they'd ever been, even as I stopped the levothyroxin.

So... it might make you worse if it's autoimmune. But if your history matches in that way, it might be worth a try.