[AmyM]

#1060341

What I mean is—I’d like to post my labs and see if anyone else here has similar numbers and what treatment is working for them. I’m starting to have slight doubts about my current Endo.

Background: Graves disease, methimazole/propranolol treatment for almost 2 years, still hyper, had RAI, a month later indicated hypo, started on 50 mcg levothyroxing, then 75, then 100…was still feeling “not right”–lots of weight gain despite working out/good diet, facial rash, hair thinning, no sex drive…

My labs after being on 100 mcg levo for about 6 weeks are as follows:

Estrone-87.3
DHEA sulfate-74.2
Estradiol-74.1
Progesterone-5.77
B12-576.0
FSH-55.90 (HIGH)
LH- 22.80 (HIGH)
ACTH 26.6
Cortisol- 14.9
T3 free-2.26
TSH-23.00
Free T4-1.19
Ferritin-97.3
Iron 140

After reading these labs, they decided to put me on a “compound T3/T4”–which I’m not even really sure what a compound even is. And it was noted at the top of my labs “menstrual cycles can be affected by hypothyroid state or may be affected by menopausal transition as FSH and LH are elevated.”

I’m 45 and my menstrual cycles are normally about every 5-6 weeks, but I haven’t had a period since October now.

Anyone else on the “compound T3/T4”?
Any doctors or nurses on board?

Thank you!

[snelsen]

#1182028

Hi Amy, a big welcome to you!
The first thing you need to know(for yourself) is the accepted, normal range of all those lab tests. Labs differ. So the numbers mean little without the ranges which should be printed on the lab sheet. I would call the office, say you hesitate to go to compound meds, that you feel you have all the symptoms of being hyPO, and ask opinion of increasing your thyroid hormone a little bit. But better still, if you have a family doc, an internal medicine doc, maybe they are a better choice to manage your meds.

And we are not supposed to say much about labs, but easy to know the ranges for T3 T4 and TSH, look them up. So everything i am saying, is pretty much gathered from my OWN experience!!! (: The general range of TSH, for instance, is .4-4 in many places. Therefore, your TSH of 23, says that you are definitely HYPO and all the symptoms you mention fit with this. And this is the kind of thing that you need to ask your endo. Or SOME doc! So not sure about the ones that are indicated HIGH, did you write that, or was it not the results??

This is from the internet:

There, a TSH that is higher than normal suggests a thyroid that is underactive and not doing its job of producing thyroid hormone. So, in general, HIGHER TSH = UNDERACTIVE THYROID / HYPOTHYROIDISM.

And so is this:
What is normal range for t3 t4 and tsh levels?
In: Health, Laboratory Testing, Endocrine System [Edit categories]
Answer:
T4: Normal Adult Range: 4 – 12 ug/dl Optimal Adult Reading: 8 ug/dl
T3: Normal Adult Range: 27 – 47% Optimal Adult Reading: 37 %

I am inclined to agree with you that seeing another doc, taking your labs with you is a very good idea.

Regarding compounding meds- here is a discussion about them. Generally, not the best way to go cause there is no due diligence or FDA surveillance of the ingredients.
http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/PharmacyCompounding/ucm339764.htm

Again, you know all this, but your age, and most probably being perimenopausal, is probably happening too.

If you find a good website, NIH, or academic endocrine website, ready about hyPO and hyper.

I have gone a bit beyond discussing labs, but you should have had all this explained by your doc. I agree with you that it is better to stick with regular meds right now, not go to compounding route, and continuing with thyroid hormone replacement until you get to that sweet spot. For labs to be reflecting where you really are, 6 weeks to 2 months is the time you should wait to get more labs.

In my own experience, I have never had any of the rest of the labs you had, good to have a baseline with that information.
you WILL be better.
***WHEN did you have your RAI??
I suggest using the search part of this forum, too, read the experiences of others.
Shirley

[Kimberly]

#1182029

Hello – Just to add to Shirley’s comments, we are not allowed to give medical advice on this board, which includes interpreting labs. In general, though, there are two thyroid hormones, T3 and T4, and T3 is the more active and powerful hormone. What *should* happen for patients taking T4-only replacement hormone (Synthroid, levothyroxine, etc.) is that the body will convert the T4 into T3 on an “as needed” basis.

However, some patients whose levels are normal, but are still experiencing symptoms, choose to pursue therapy that adds in T3. Armour is made from porcine (pig) thyroid glands and contains both T4 and T3. There is also a synthetic form of T3 (Cytomel) that does not come from animals.

In the past, the U.S.-based medical agencies have not been big supporters of using T3; however, there have been a couple of recent studies indicating that this might be of benefit to certain patients, and this is starting to get some attention in the U.S. medical community. There was also a study from a few years ago that indicated that some patients with a specific genetic type might do better on T3/T4 combination therapy.

The European Thyroid Association supports the use of combination therapy, but only under very specific guidelines:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.karger.com/Article/FullText/339444

They recommend T4-only therapy for at least six months and then ruling out any other conditions that could be causing the symptoms, as well as ensuring that the patient is compliant with dosing guidelines (taking meds consistently on an empty stomach, avoiding soy/calcium/iron within 4 hours, etc.). If the patient is still experiencing symptoms after that time, they recommend a short trial of synthetic T3 (they do *not* recommend Armour or other dessicated products), with a follow up evaluation to see if symptoms improve.

We’ve heard mixed reviews from patients who have tried combination therapy. Some feel that it brought back a return of their hypER symptoms, while others feel that it made a significant positive improvement in their symptoms and their quality of life. One issue is that when you take T3 directly, you are getting a big dump of a very powerful hormone…but then it has a fairly short life span within the body. So you could end up with fluctuating hormone levels throughout the day.

[connypie]

#1182030

hi Kimberly,that article on the t4 and t3 combination was very helpful.it explained a lot of the symptoms ive been having.diagnosed at 28.radiation at 28.levothyroxine since then.eye involvement since 28.i was basically told to live with it or to not be so sensitive.i had a spike last fall?and i almost went for mental help,it was so bad.so now im looking for a new endo,to see if maybe the combo t4 and t3 would help me.oh sorry im 47.so ive had graves for a while. thanks for the info.will let you know if it works,if i remember to write.bad memory,part of the problem.

[Kimberly]

#1182031

@connypie – Yes, definitely be persistent and look for a new doc if you don’t think your current provider is taking your symptoms seriously. The “Looking for a Doctor?” thread in the announcements section of the forum is a good place to start; there are several options where you can search by city/state/zip to find an endocrinologist near you.

Take care!

[snelsen]

#1182032

Hi conniepie, how are you doing? To repeat, of all the labs you got, the ones that matter for Graves’ (especially since you have a baseline for everything under the sun….!( The labs that matter are the thyroid hormone labs, PLUS how you feel.
And your labs need to have the RANGE stated right next to them. The standard ranges vary (not a lot, but some) according to the lab.
For instance, The GENERAL range for TSH is around .4-4.5. So your high number of your TSH indicates you are hyPO. I am just stating what you can read in any reliable website or academic discussion of labs. Think I said all this before.

So, seems like you do need an different endo, OR if that is difficult, some internal medicine, and even some primary care docs really know about Graves’ cause it sounds like you REALLY need a good and informed doc with your Graves’.

I’d stay away from the compounded meds. They are not regulated by FDA, and it makes another variable that is pretty much unknown when treating Graves.
Shirley

[connypie]

#1182033

hi kimberley,i finally found a endo and got a appointment for the middle of july.had to call my lab company to get all my labreports,since ive had different doctors run labwork.i dont think my dr even did labwork after he changed my levo dose.im feeling better but the muscle weakness is not getting better and i have not gotten back all of my cognitive functions.

[Ski]

#1182034

Hi Connypie,

The overall healing from Graves’ can take much, much longer than normalizing thyroid hormone levels. In fact, until your thyroid hormone levels are normal (for you), and stable, your body is not truly even healthy enough to begin the healing process. Try to look at it as a “better each day” kind of thing — look to the improvements you can find in today vs. yesterday, that way you’ll see the positive movement and celebrate it. “Back to normal” is the ultimate goal, but you get there in small steps. You WILL get there!

[connypie]

#1182035

hi guys, i finally got a hold of my labs for the last year.JANUARY 2013 TSH 0.296—-MARCH 2013 TSH 1.35

---

OCTOBER 2013 TSH 1.01—-JANUARY 2014 TSH 1.43 and T4 12.8 .apparently he only tested my TSH levels untill this last test.ive had 2 adjustments in my levo,both lowered.

[Kimberly]

#1182036

Hello – For patients who have been taking replacement hormone for a while, are feeling great, and have normal/stable levels, TSH testing alone is often the usual practice. But definitely let your new doc know about the symptoms you are having – T3/T4 testing can shed further light on what is going on. Hope you can get some answers!

[Author]

Posts