[barbra]

#1060250

I can’t figure out how this is possible. I had been feeling really good for almost a month and then about a week ago it started going downhill again: tired, cold, muscle aches all over, chest pain, some hair loss and still gaining weight. So much so that I had labs done a week early. I was sure I was still severely hypo.
Got the results from the endo today:

Free T4 = 1.4, ref. 0.7-1.8
Free T3 = 2.8, ref. 2.3-4.2
TSH = 3.5, ref. 0.4-5.5

My PCP had also ordered liver test and BMP, all came back smack dab in the middle of normal.
So, why do I feel like crap?

As I’m writing this here comes a surprise. When I picked up the copy of my lab results this morning I did leave a message with the endo about not feeling well at all and I just got a call. He wants to increase the Levothyroxine to 88 mcg and add the Cytomel again.
I hope it helps, it did on the last go-round, but I still don’t get it. Everything is normal, where it should be, but I feel like I got run over.
I would have thought the 75 mcg I was taking would be ideal, according to the lab results.

Oh well, I’m off to the pharmacy again. What does one do with all the left-over Levothyroxine? Maybe it’ll come in handy later.

Hugs to all of you.

Barbra.

[LaurelM]

#1181535

Hi Barbra,
The TSH has a pretty wide normal range. Even though your labs may be falling within the range, it sounds like you are not at your Goldilocks just right for you dose. My endo said he likes to aim for a TSH of 1 to 2 for most people post RAI or TT. The good news is that your endo is not just leaving where you are at but is adjusting based on your symptoms as well as the numbers.

I am lucky to have had a near 6 year remission with regular testing to monitor mylevels so we have several tests to base my TSH goal upon. We know that my body likes my TSH to be about 1.2 but everyone will be a little different. It certainly is annoying that it takes so long between dose adjustments to know the real result.

Good luck!
Laurel.

[barbra]

#1181536

Hi Laurel,

Sounds like we’re trying to thread the eye of the needle here.

I had really hoped that we had stumbled on to the right dosage. What surprised me was that my TSH was 26.8 five weeks ago and I never thought it would drop into the normal range that fast on only 75 mcg of Levothyroxine.

One would have thought I would remember this ride from a while back. It’s like having a baby, as soon as one feels better one forgets how much it hurt.

I’ve only seen my endo twice since the RAI, which was done by someone different at the hospital on the first of July this year, but he does get back to me when needed.

Congratulations on your remission, that’s great, and I hope you stay that way.
It’s good to hear from someone who’s actually steady up on that tightrope.

Hugs.
Barbra.

[Kimberly]

#1181537

Hi Barbra – In addition to the good feedback that LaurelM provided, you’ve had some pretty extreme swings in TSH lately. Hopefully, you will start to get some symptom relief once levels are both normal *and* stable.

As for the unused levo, keep an eye on the DEA’s web site; they usually do a couple of “Drug Take-Back” days every year, and they have locations all over the country where meds can be safely disposed of:

(Note on links: if you click directly on the following link, 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.deadiversion.usdoj.gov/drug_disposal/takeback/

They just had one in October, so the next one will probably be in the spring.

[mvk]

#1181538

Hi,

I haven’t posted for a while but your post today hit home with me. I do wish someone could explain to me this phenomena of getting a medication change, feeling great for a while and then feeling just as bad or worse. I had my tweak in September, felt so much better and the last week or so have progressively been feeling worse. I am going to go do labs tomorrow and have an appointment the next week with my endocrinologist. I hope I can make it that long. Honestly, I just don’t get it at all. This has been going on since I had RAI in April of 2012. I am sharing your pain and looking for answers with you. I think part of my problem is that I am 63 and my endocrinologist is very cautious about my med changes. Tiny increments at a time. I just don’t understand why initially the change works. Almost immediately I feel better but it just doesn’t last! Hopefully someone can explain!

[snelsen]

#1181539

I suggest keeping your thyroid hormone that you are not using right now. There may be another dose change.
Shirley

[barbra]

#1181540

Hi,

@Kimberly,
Last year when my husband passed away I did use the local PD’s take-back program to get rid of his leftover meds. It was embarrassing how much unused medicine he had. He was treated for his cancer by the VA and I have to say that, unlike my insurance company, they were never stingy with any kind of meds.

@mvk,
I am 70 years old and do occasionally run into a doctor who is very careful in prescribing medicine. Like my PCP for instance, who still thinks that the “good” migraine medicine will kill me on the spot. So he sent me to a neurologist, who had no problem giving it to me.

@Shirley,
I’m pretty sure you’re right, as always.

BTW, while I got you all here I have a favor to ask: Some time back someone posted a remedy for hair loss, some shampoo, maybe from Biotene. I searched the posts but can’t find it anymore. I’m hoping someone remembers or has a remedy.
Help, the hair falling out has become a problem in the last week. I’ve never had an over-abundance of hair to begin with.

Thanks for putting up with me, again.

Hugs.
Barbra.

[SueAndHerZoo]

#1181541

Good grief….. maybe the planets are out of alignment or something, it seems like we are all going through “dosage tweaking hell” right now! I just posted 5 minutes ago about changing my meds a tiny bit but feeling big time awful. This disease never ceases to amaze me, and I love the comment about having a baby and forgetting afterwards how painful it was. I know I went through this during my last dose change but forget when it’s over and need reassurance again.

Glad to have you all here.
Sue

[ChristinaDe]

#1181542

Hi Barbra! I agree w/ Laurel…for some of us it may not be enough to simply be in “normal” range…that our “goldilock’s” dose sits within a much tighter range within that supposed normal displayed on the lab slip.

I had a very similar experience to you. Had a dose change (on my Synthroid) for what was an obvious hypo level by any lab’s standard (TSH in the teens if I recall correctly). That increase made me feel better for a very short while, almost “normal” (I was so happy & excited…my 1st taste of feeling good in a long while), and then bam! The floor fell out from under me. I felt more hypo than ever. Got my labs done early (it was also only about a month into that particular dosage change for me) & while I was within normal lab limits this time (I think my TSH was 3.6), my endo said that this obviously was not a result that was going to work for me. She wanted to try to get my TSH between 1 & 2. So another dose increase! Went through the misery of dose-change-itis…and then felt perfect 2 or 3 wks later!!!. It’s been a little over 2 months now, just had my labs done. Lo & behold my TSH is 1.8. My porridge feels just right! lol Hoping it holds and doesn’t make a run for hypo-land again…but my point is that in my case…the entire “normal range” listed by my lab does not sync up w/ the normal range for my body. My range is even more narrow than the lab would suggest.

I can’t speak to adding T3 to the mix since we haven’t had to go there in my case. My endo was open to it, said that if we continue to struggle w/ hypo symptoms while having normal labs she’d try it because for a smaller percentage of folks that really can be the holy grail. But she didn’t want to try it until we got me between 1 & 2, and then only if I continued to feel hypo. She suspected that I was one of those patients that may be sensitive to a TSH over 2. She was right.

As for hair fallout…OMG!!! Every time I have hypo symptoms, every time I have hyper symptoms, every time I go through a dose change…my hair falls out fast and hard!!! Really freaks me out when it happens. Once things settle, the fall out stops. Until the next time. However, and this could be in my head, but I swear that since my TSH landed under 2 and stuck there for more than a week, I’ve begun sprouting a bunch of tiny little hairs. My hairdresser even mentioned it at my last haircut. So if I’m being delusional or overly hopeful, then so is she! But I’m absolutely positive that the abnormal fallout has stopped & that the body to my hair has returned. So hang in there. (We really say that to each other a LOT, don’t we?) Sound like your doc is being responsive to your concerns and the way you feel…so glad to hear that part!

[SueAndHerZoo]

#1181543

ChristinaDe wrote:

As for hair fallout…OMG!!! Every time I have hypo symptoms, every time I have hyper symptoms, every time I go through a dose change…my hair falls out fast and hard!!! Really freaks me out when it happens. Once things settle, the fall out stops. Until the next time. However, and this could be in my head, but I swear that since my TSH landed under 2 and stuck there for more than a week, I’ve begun sprouting a bunch of tiny little hairs. My hairdresser even mentioned it at my last haircut. So if I’m being delusional or overly hopeful, then so is she! But I’m absolutely positive that the abnormal fallout has stopped & that the body to my hair has returned. So hang in there. (We really say that to each other a LOT, don’t we?) Sound like your doc is being responsive to your concerns and the way you feel…so glad to hear that part!

Oh my goodness, talk about hair changes – I called my hairdresser this morning and told her that she MUST find an opening for me in the next day or two to give me a perm because I can’t take my hair anymore! I used to get perms regularly for the body and holding power but then let it all grow out and get healthy and untreated. She was shocked when I asked for a perm again after all the work growing it out but I told her it’s getting so thin and flat and fine that I needed the chemical help so I go at 2:00 tomorrow.

I wondered if getting a perm during these times is a bad idea but I think we are losing our hair from the roots, NOT from breakage, right? Well, I guess I’ll know tomorrow when she takes the rods out… if all my hair comes out with it I’ll know it was a bad idea. 😮
Sue

[Kimberly]

#1181544

Hello – I don’t recall the thread on hair loss that you mentioned, but the following video might be of interest. It was from a patient education event that the GDATF co-sponsored with the Let’s Face it Together Foundation last year in San Francisco:

(Note on links: if you click directly on the following link, 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.youtube.com/watch?v=f-416OblbBo&feature=c4-overview&list=UUtk7ADMBXKKivCTpQI6VuCg

Hope this helps!

[ChristinaDe]

#1181545

Yeah, I can’t remember how that goes either…whether hyper makes it fall out & hypo makes it break off OR if it’s the other way around. During the time my levels were changing I think it was both for me. My hair became so dry, brittle, lifeless, flat, dull, etc.

In my case, my hairdresser wanted me to avoid all harsh hair chemicals because my hair was barely hanging in there. She wanted me to wait (why does everyone tell us to wait on EVERYTHING?!!) until my levels and hair fallout stabilized & my hair became healthier/stronger. So she wouldn’t even give me highlights.

Just so you know, once my levels improved & stopped moving, the body in my hair improved almost overnight. Waiting for what fell out or broke off to come back is another story of course. But I’ll take the increased body & no more handfuls of hair in the shower for now!

[SueAndHerZoo]

#1181546

ChristinaDe wrote:

Yeah, I can’t remember how that goes either…whether hyper makes it fall out & hypo makes it break off OR if it’s the other way around. During the time my levels were changing I think it was both for me. My hair became so dry, brittle, lifeless, flat, dull, etc.

In my case, my hairdresser wanted me to avoid all harsh hair chemicals because my hair was barely hanging in there. She wanted me to wait (why does everyone tell us to wait on EVERYTHING?!!) until my levels and hair fallout stabilized & my hair became healthier/stronger. So she wouldn’t even give me highlights.

Just so you know, once my levels improved & stopped moving, the body in my hair improved almost overnight. Waiting for what fell out or broke off to come back is another story of course. But I’ll take the increased body & no more handfuls of hair in the shower for now!

I don’t really know if my hair is falling out from the roots or if it’s breaking, but it seems to have slowed down over the past week or two. And regarding “waiting” on the perm tomorrow? No! I, too, am sick of having to “wait” for everything related to this disease (which involves practically every organ in our bodies). My hair is not brittle or dry- a few weeks ago my hairdresser was marveling at how healthy and shiny it was, just…. falling out. So I’ll gamble tomorrow with a mild perm that is only on my head a few minutes. There are too many other “waits” I’m already patiently trying to stick to….. I need some immediate gratification on this one.
Sue

[ChristinaDe]

#1181547

I hear you Sue! There are days when I think if I hear the word “wait” one more time I’ll just scream. Sometimes we just have to go for it & do what feels right to us along the way. Little rewards.

Have a great day tomorrow!

[barbra]

#1181548

Thanks, everyone, for commiserating with me and thanks for the link to the video, Kimberly.

I do hope things go well at the hairdresser’s tomorrow, Sue. I had to smile at the thought of the hairdresser’s face looking at your hair stuck on the rods. And for that I’m truly sorry!
My hair also looks healthy and shiny as it lays in the shower drain, on the sink and in my comb.

Somehow, thinking back to my last trip through this miserable leg of the journey, it came to me that maybe it’s not so much the TSH as maybe the T3, which is at the low end of normal. I just started the new dose of Levothyroxine and since the Cytomel did such a great job the last go-round I am hoping for the same result. I just hate that it took my body four weeks to decide that “this isn’t it”.

So, let’s start again and good luck to all of us.

Hugs.
Barbra.

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