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-   -   Endo and TSH (http://www.lowcarbfriends.com/bbs/showthread.php?t=883545)

vanilla_latte 08-11-2016 04:46 AM

Endo and TSH
Why would an endocrinologist be satisfied with just TSH?

My GP is the one who put me on Synthroid. Went to see an endo and he added Cytomel (5mcg, twice a day). He hasn't done blood work as I had just had done with the GP prior to seeing him. But I do know he says TSH tells him all he needs to know. I found that odd going by what all I've learned so far.

I'm tempted to see if my GP will switch me to branded Synthroid. I started it almost a year ago and even with the Cytomel added, feel no difference.

Leo41 08-11-2016 08:13 AM

The T S H alone is for diagnostic purposes in those with no thyroid symptoms, IMO. I am not a physician, but I cannot understand how any doctor can monitor a patient taking Rx thyroid hormones without checking T4 and T3 regularly.

Me endo does a full blood panel, including ALL the thyroid levels. How else could a physician calibrate the correct dosage?

ChelePA 08-11-2016 02:17 PM

I also get a full panel with med adjustments...can't do it with tsh only. Otherwise..I never would have been diagnosed.

vanilla_latte 08-12-2016 04:25 AM

My GP knows the endo and had told me he only goes by TSH. I thought she was mistaken! I know someone else who goes to him and because of major thyroid issues (cancer), he does the full panel on her.

All the other thyroid tests I had done over the years, since both hypo- and hyper- run in my family, I'm guessing all they ever tested was TSH because I was "normal". It got worse though because when I asked the GP for a full panel, my TSH was initially almost 10.

It's a shame we have to educate our doctors.

Edition10 08-30-2016 11:58 AM

Most endos are trained to look only at TSH. This is not super helpful, but it's what they do. Their concern is - is your TSH suppressed? If so then they will decrease your meds (however misguided this may be).
Be your own advocate. Insist on full labs including T4, free T4, T3, reverse T3, and thyroid auto antibodies. Also a vitamin d level- super important.
If your doctor is not willing to listen to you re: the labs, then consider change to a functional medicine doc or DO.
Consider reading the book Stop the Thyroid Madness.

vanilla_latte 08-31-2016 10:53 AM

Edition10 - That's what's so darn frustrating with all I'm finding out. Not only about thyroid, but with cholesterol, too. I've lost confidence in doctors as I'm finding out they are so behind the times on the info! Next time they tell me my numbers look good, I'm speaking up and reiterate that I feel no difference since beginning this journey.

Yes, I was told to take Vitamin D and she'll be testing that as well next month.

Have you used a functional doctor? I just became aware of them through the STTM website and Mary Shomon, too. I've been doing some research and see that they treat the symptoms not (just) the numbers. I'd love to hear your experience.

rachel2writer 08-31-2016 11:03 AM

You need an endo who will also monitor thyroid antibodies to look for Hashimotos. I'd be looking for another endo right away - you need one who knows much more about thyroid treatment.

vanilla_latte 08-31-2016 11:12 AM

Thanks, Rachel, and agreed about the endo. Guess I'm going to have to start calling and find one that doesn't go by the numbers. Also hoping to hear more about functional doctors.

Edition10 08-31-2016 07:01 PM

My experience is a little different because of the type of thyroid disorder I ultimately developed. However, I received a diagnosis of Hashimoto's disease (auto immune hypOthyroidism) in 2012. At that time I had been able to lose weight with a lower carb calorie restricted plan, but I felt literally every day like I was dying. Like maybe I had cancer or some sort of other horrible issue because it was all I could do to work, teach my Zumba class, and go home. I had lost hinge amounts of hair and my scalp was fully visible. I started first on synthroid. I found a doctor who practices functional medicine and was switched to Armour thyroid in 2013. The difference was immediate and staggering. I felt so much better on the natural thyroid product! I had some small solid nodules on my thyroid that we were monitoring via ultrasound. In the fall of 2014 ultrasound showed that I had developed a large, mixed echogenicity, bi-lobed mass on the left lobe of my thyroid. I had a needle aspirate that yielded only inflammatory cells. We were watching it. In November I started having exercise intolerance and my three mile run became a full 6 minutes slower. Then in December I had an episode at work that took me to the ER with severe tachycardia (high HR). Ultimately I was diagnosed with a rare disorder called Hashimoto's thyrotoxicosis (sudden hypERthyroidsm that can occur in some Hashimoto's patients). I could not be managed with methimazole (anti-thyroid drug), and I had this large mass anyway, so I had surgery - complete thyroidectomy. My surgery was August 2015.
Since then it had been a journey getting my meds regulated, reminding my doctor I HAVE NO THYROID AT ALL and not to look at TSH. But I have a doctor who listens to me and knows I am well read and have a medical background (I am a veterinarian). That is key I think- finding someone who listens to you.
Anyway, I felt the best I've ever felt on Armiur thyroid in early 2014. I was at my goal weight, looking great and all around killing it.
Major setbacks since then- after surgery I put on tons of weight. This has been an unfortunate combination of not having the right thyroid supplementation level yet and insane stress triggering a relapse of my binge eating disorder (my dad died and my marriage is ending).
Overall I'm not a great person to look to as far as typical results lol. But my experience with functional medicine doctors has been great.

vanilla_latte 09-07-2016 04:27 AM

Wow, that is a lot to have to go through! I hope things get back on track for you and get to feeling as good as before your surgery. Thanks so much for sharing your journey. The biggest drawback for seeing a functional doctor is the one I'm looking at doesn't have a contract with any insurance companies. I have no idea how much lab work costs if one is self-pay. I'm going to have labs done this month at my GP and hope they'll have most of what the FD would want to see if I opt to visit her. I'm going to also talk to my GP about trying Armour. Thanks for sharing, I appreciate it. :high5:

Leo41 09-07-2016 04:48 AM

I know that there are a variety of 'dramatic' thyroid stories because all of us respond differently, so I'd beware of trying to follow anyone else's experience in terms of Rx or doctors.

I have a friend who had his thyroid removed over 20 years ago due to Graves' disease, and he's been thriving on Synthroid since then--with no weight gain, fatigue or other issues.

My own experience is that my primary failed to diagnose my (obvious) thyroid symptoms for 5 years--and I foolishly listened to him. It was only when I could barely function with overwhelming fatigue that I self-referred to an endo and was diagnosed and treated immediately.

I was fortunate to have a physician family friend who recommended my current endo, who is excellent. Nevertheless, my Rx have had to be periodically adjusted, and I need regular blood work (every 4 months) to monitor my thyroid.
(I have Hashimoto's.) I do fine with Synthroid and Cytomel. One advantage (over Armour) is that the T3 can be carefully regulated with Cytomel, and T3 is critical for our health. If someone actually needs T3 (i.e., isn't converting well), then Cytomel is essential, in my experience.

What everyone needs is a good thyroid doctor--and unfortunately they seem to be difficult to find. My sister also has Hashi's, and although she's a medical secretary who knows a lot of doctors, she spent 20 years with 'bad' treatment, unable to find either an endo or internist who was a 'good' thyroid doctor. She now goes to my endo--even though it's a long distance for her to travel; good treatment is worth it.

vanilla_latte 09-08-2016 04:32 AM

Therein lies the whole problem - finding a doctor who doesn't treat numbers. Which the GP does and the endo I went to. So, I'm on two meds, both generic, and I feel absolutely no difference. The only thing I've noticed is that my eyebrows seem to be filling in a little. I still would like to try Armour to see if there's noticeable change. In a year's time I think I should be noticing something and I just haven't. That said, I don't have the overwhelming fatigue that many have. When I first began Synthroid, yes, it made me extremely tired all the time for several weeks.

I have no "standard" to go by how I feel since I don't feel any different on meds than I did off. In essence, I still don't know what I'm looking for!

emily1965 09-13-2016 04:48 PM

Vanilla, May I ask what state you live in?

DebM 09-15-2016 08:49 AM

I fired 2 endos. They were tsh worshipers. Did nothing for me. Went to Body Logic who were awesome but expensive, ended up with a DO who's leaving the state now, lovely.........going to a NP that the DO recommended who deals with hashimotos.

vanilla_latte 10-24-2016 02:04 PM

Haven't been here in a bit!

Lisa - I'm in Texas.

DebM - What is a NP? I've thought about going to a functional doctor. Still thinking on that since insurance doesn't cover it. But, she eats the way I do and isn't hawking supplements on her site. So, I'm still considering it. Maybe after the holidays are all over!

So - for anyone lurking - question. I had hoped to have a test run last month, but time got away. :o I know it's recommended to not take the meds the day of the blood work (or even two). But since this will be my first since adding Cytomel to my Levo, does that still hold true?

Also still thinking about asking for Synthroid, Armour, or Naturethroid.

Geez, I think I think more than do! :D

Leo41 10-24-2016 03:48 PM

I don't know who recommends not taking Rx the day of blood work, but my endo has never mentioned that, and I take my Synthroid and Cytomel as I normally do on those days.

Synthroid doesn't cause any 'spikes' that would affect the hormone level in the blood, and Cytomel works quickly but has a short life. I normally take my Cytomel dose (first of three) about 6 hours before the blood draw, so it would not affect it at all. After the blood is drawn, I take my two additional doses, at the same times that I do every day.

Since the purpose of the labs is to assess your thyroid hormones WITH the supplemental hormones, I don't see why you wouldn't take them.

ChelePA 10-24-2016 06:09 PM

I have been told not to take them. Should be twelve hours from last dose. I get mine done early and take meds afterwards.

GME 10-25-2016 07:00 AM

My docotr tells me not to take them (t3 and t4) and get my draws done at appx the same time of day if I can.

vanilla_latte 10-25-2016 08:53 AM

Leo - I was surprised as well because I'm thinking taking them as usual would help see what/if they're working and/or where the numbers are. It was suggested to me when I first began this journey by someone I very much trust and has been through the gamut with thyroid issues herself.

But, I've seen it recommended widely and with the comments from ChelePA and Gina seems to be something very common. Ladies, have your doctors' every told you why they shouldn't be taken?

Leo41 10-25-2016 09:00 AM

So it wasn't a doctor who told you not to take your Rx?

I often get annoyed because thyroid 'principles' take on a life of their own that often have no basis at all.

I read and hear a lot of things, but I have an excellent endo, and I always check with him. My labs are done in his office, and he's never suggested I adjust my Rx schedule for the labs.

ChelePA 10-25-2016 09:56 AM

Based on times t3 and t4 peak...Just trying to get the most accurate reading.

vanilla_latte 10-25-2016 11:02 AM

Leo - No, the advice was from her endo, which seems to be common advice both here and in other thyroid groups. Since yours doesn't, I'd be interested to know what he thinks about it next time you go. You're very fortunate to have found a doctor who has worked so well with and for you.

ChelePA, thanks. It seem odd that not taking them helps give a more accurate reading. You'd think taking them would show where the numbers are at due to the meds.

This stuff keeps me :confused: !

Leo41 10-25-2016 11:45 AM


My next check up is not until January, but I'll be sure to ask him because now I'm curious.

Yes, I am fortunate with this endo. When I was searching, I asked a family friend who is a retired physician who taught at a major medical school in NYC, and he referred me to this doctor. My sister lives about an hour away from my endo, but she was so frustrated trying to find a decent thyroid doctor that she finally came to my endo, too, despite the traveling.

vanilla_latte 10-25-2016 12:57 PM

Leo - That would be great, would love to know his take on it. Glad your sister opted to travel to a good doc - it can sure be worth it!

Leo41 01-28-2017 06:33 AM

I saw my endo yesterday and asked about taking my thyroid Rx the day I'm having a blood draw, and he was surprised that I even asked.

He said that I should be taking them normally because the purpose of the labs is to see what the hormone level is normally--and 'normal' includes the Rx we take.

He also explained that if we understood pharmacology (which he then explained but I didn't really follow), we'd see that stopping the Rx just prior to the labs would not really affect our hormone levels in any way. In other words, NOT taking the Rx doesn't appear to be providing any information relevant to the physician.

vanilla_latte 04-10-2017 01:26 PM

So sorry for taking so long to see this, Leo. I tend to hang out at LCF for awhile, then get involved in other things!

It makes sense to continue taking them. Maybe not taking them is good for when you're not seeing the desired results to get them to increase the meds.

Thanks for asking and sharing it here.

Leo41 04-10-2017 01:42 PM

No, you don't want to 'get them to increase the meds' by any type of manipulation.

First of all, they are not actually 'meds,' but hormones, and hormones are very powerful things. The physician attempts to get your hormone level as close to your 'normal' as possible, and there are dangers if the dosage is too high--cardiac issues especially.

I don't know what 'results' you are expecting, but weight loss isn't one of them. In fact, if your pharmacist gives you the usual information slips that I get with all my thyroid Rx, there's a specific statement that they are NOT for weight loss. More hormone than you need will just cause physical problems rather than weight loss. Not long ago, I read about 28-year-old woman who gave herself a heart attack by increasing her thyroid meds to lose weight.

If, however, you have symptoms that indicate you need a higher dosage, you should report that to the doctor. A good thyroid doctor prescribes based on labs AND symptoms. The last 2 times my endo increased my dosage, it was entirely based on my reported symptoms. My labs looked fine. And in both cases, the increase proved necessary.

That's why it's so important with thyroid to find a good doctor and develop a trusting relationship because most physicians are very conservative with treatment because of the danger of too much hormone, and the physician needs to trust that the patient is accurately reporting symptoms AND will report any negative effects that indicate too high a dosage.

Keep in mind that thyroid problems will be with you for the rest of your life, so finding a good doctor and working with that person is essential to long term treatment.

vanilla_latte 04-10-2017 02:23 PM


I won't deny I'd hoped to lose at least a few pounds since I have struggled with weight since I was in my early 20's and I'm rapidly approaching 60. But, it hasn't happened so I hold no hope for it. But know where my numbers should lie in those ranges and since they weren't, I was glad I hadn't taken them when needing a blood test. I need to get another one soon as my last one was in November. My TSH had finally gone down to 1.something. Can't remember off hand what the T3 and T4. Just remember that they still weren't higher in the range like I'd like.

Since I've seen more yays in not taking them, I was curious as to what you're endo said since you're about the only I've ever seen have a good endo.

Leo41 04-10-2017 04:30 PM

Keep in mind that unless your T4 and T3 are VERY low in the range, most physicians will use the TSH as an indicator of whether or not your dosage is correct. For someone taking supplemental hormones, the TSH should be no higher than 1.0.

The range is ambiguous because I've read advocates who insist we need to be in the top third of the range, but I actually feel great when I'm at about half or slightly below.

In reading about this, I've learned that we are all 'unique' in the hormone level that is right for us, and the ranges are just an indication to cover the wide range of 'normal.' That's why physicians tend to use the TSH. For example, my TSH was always about 1.0--until I experienced 'conversion' problems, and my T3 dropped to below lab range. But my TSH also shot up to 2.6, so that was an indicator that something was terribly off.

My point is that if your TSH is 1.0 or below, most physicians will regard your T4 and T3 levels as satisfactory if they are generally in range--unless you are having severe symptoms. But that's the other problem with thyroid--the symptoms are so common to other maladies, so it's not so easy to say that it's thyroid.

vanilla_latte 04-11-2017 04:24 AM

I've never felt better or worse after getting on the meds which has frustrated me a bit, or maybe just surprised me. My TSH going from over 9 in the beginning now down to just over 1 makes me happy - I kept expecting to feel some kind of change, but I never have and it's been a year and a half on Levothyroxine and coming up a year on the Liothyrinne (Cytomel).
I guess knowing my thyroid is probably in better shape than it's ever been will need to be good enough.

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