Another Thyroid Thread.... (Redux)

[Blueberry]

So...I have my bloodwork back, and a visit to the doc schedule on Wed. Apparently she was out of town, as someone else assessed the results as "normal" and sent them on to me. Vit D was 31 ng/mL which is just barely on the border of normal (and I expect might be part of the problem). Tsh was 2.88, and thyroxine was .75. I'll be curious what she suggests. While she was sympathetic when I last saw her (and much better than the other doc I saw), she also said I could not have hashi's because I'm hypo, not hyper. I thought it was one of the main causes of hypo, and that if you had it, tsh had to go lower than normal for successful treatment (ETA: Yes, I have confirmed I'm not crazy. I have e-book access to med textbooks through my university - I'll probably bring a print out with me). In any case.....as shall see what happens wed. I'm still feeling hypo, but not as bad as a couple of weeks ago.

Hugs to all who are dealing with this still!

[indysteel]

You had a doc tell you that you can't have Hashi's because you are hypo, not hyper. Find another doc; she's seriously misinformed. Have you been tested for any of the several antibodies that are associated with autoimmune related thyroid conditions? That's the primary way one tests for Hashi's.

Regardless, 2.88 TSH is still on the high range of normal. Are you still experiencing hypo symptoms? If so, then lobby for an increase in your Synthroid. But, seriously, I have grave doubts about this doc.

[Blueberry]

Yep I really had a doc tell me that, and yep I am still definitely having hypo symptoms. I got better, and then started backsliding. I expect my body was happy for the increase, and then adjusted back some. When I had the conversation about Hashi's, I was asking if we could test for the antibodies, and that's when she said it couldn't be Hashi's. I think after the first doc, having someone listen was such a relief that I didn't react as I should have. Do you happen to know if the tests would still show something since I'm on replacement?

There's a doc who has written about treating hypothyroidism who is close to me. Going to investigate if he's in my insurance. If he is, I might go ahead and make an appointment with him. ETA: crap. Not in my network. It's scary how little some docs know.

[solobiker]

Solo, what were your specific levels the last time you were tested? What a doc may deem as "just fine" might not be just fine for you.

2.0 which is pretty normal as far as I know. I just wish I could get rid of this nervousness feeling. It is not fun at all. Even when I am working out it does not go away. Sigh...

[indysteel]

Blueberry, Synthroid doesn't reduce antibody levels. If it gives any consolation, even if it is Hashi's, the treatment plan isn't really different. You'd still be focusing on TSH levels. It's alarming though because it speaks to her knowledge of the thyroid more generally. In the very least, I'd be prepared to argue that you need a dosage increase.

Solo, I wish I knew the right fix. For some a TSH of 2 might still be too high. Some docs say that 1 closer to normal, but there is some dispute as to how narrow the normal range should be. But you are right to consider other causes. Remind me; is your condition autoimmune related? Sometimes symptoms can worsen when antibody loads go up.

[emily_in_nc]

Also Solo, until you get things straightened out, you might look at taking one Benedryl in the evening before bedtime. They are now marketing it as Zzzzquil, but all it is is Benedryl (probably pricier) -- 25 mg. of diphenhydramine (generic if you can find it). I have sleep issues as well as lots of itchies because of the bugs here (no-see-ums this time of year), so I have been taking it many nights. It's not ideal since it gives me the morning sleepies, but it does keep me from waking up at 2 or 3 or 4 am and lying there ruminating for hours...that SUCKS. Ambien is good too but probably more easily to become dependent on it. During perimenopause, I don't feel bad about needing a little extra help, because insomnia is not productive at all.

[solobiker]

Also Solo, until you get things straightened out, you might look at taking one Benedryl in the evening before bedtime. They are now marketing it as Zzzzquil, but all it is is Benedryl (probably pricier) -- 25 mg. of diphenhydramine (generic if you can find it). I have sleep issues as well as lots of itchies because of the bugs here (no-see-ums this time of year), so I have been taking it many nights. It's not ideal since it gives me the morning sleepies, but it does keep me from waking up at 2 or 3 or 4 am and lying there ruminating for hours...that SUCKS. Ambien is good too but probably more easily to become dependent on it. During perimenopause, I don't feel bad about needing a little extra help, because insomnia is not productive at all.

I actually tried Benedryl and it did the exact opposite..I took it at 9pm, fell asleep and was wide awake by about 1030 that same night. I guess some people it does that to. I have tried Ambien...does not work at all..I have tried it several times without luck. My Dr started me on a different one on Friday...no luck with it yet..I will give it some more time. I just really really want to know what it is like to sleep again. It has been way too long..several weeks.

Sorry for the thread hijack.

[emily_in_nc]

I actually tried Benedryl and it did the exact opposite..I took it at 9pm, fell asleep and was wide awake by about 1030 that same night. I guess some people it does that to. I have tried Ambien...does not work at all..I have tried it several times without luck. My Dr started me on a different one on Friday...no luck with it yet..I will give it some more time. I just really really want to know what it is like to sleep again. It has been way too long..several weeks.

The one sleep aid that worked like magic for me was Lunesta. I requested an Rx after my dad died and I just could NOT sleep. It put me to sleep fast but wore off early enough that I didn't have any "hangover" feeling. I went off it because it was expensive, so I switched to generic Ambien instead. That worked pretty well at putting me to sleep fast, but I'd still sometimes wake up in the middle of the night. There's now an Ambien CR (continuous release) that is supposed to counteract that problem, but it's more expensive and was not available in generic at the time. I found Ambien to be slightly habit-forming, though, and there was definitely a rebound effect when I stopped taking it: my insomnia would be very bad for a couple of weeks. So it really shouldn't be used long-term but can get you through a rough patch.

Benedryl doesn't put me to sleep quickly but it seems to help me fall back asleep instead of lying awake worrying when I wake up in the middle of the night, and it helps me sleep a little later in the morning.

Good luck -- insomnia is not fun.

[indysteel]

Sigh. Latest bloodwork still shows that I'm hyper. I was hoping that when I went off Synthroid, that my TSH would go back up. My new doc is steering me toward RAI/ablation. I don't know how I feel about that. On one hand, I haven't yet has good luck with Methimazole in that it put me into a hypo state no matter the dose. On the other hand, ablation seems so permanent. I know that thyroid eye disease (which I have not yet been diagnoses with) can get worse after ablation. I haven't actually talked to the doc yet, so nothing is set in stone. I still feel so lost as far as really trusting my docs. I have only met the new one once, and don't know that I feel confident enough in her to destroy an organ based on the strength of her advice.

[Catrin]

Sorry to read this Indy, I know it's been a long road for you. For me it was a great relief after my surgical thyroid removal, but my situation was far more advanced. I had the bulging eyes, among other things, and that went away after the surgery. I've been told one still actually does protrude a tiny amount but no one can tell without special tools.

I know you won't let her rush you into something you aren't comfortable with and you will tell her your concerns. Hang in there and I hope you are able to get this under control soon regardless of the method.

[redrhodie]

Indy, that's so frustrating. I'd be hesitant to proceed on that course as well. I'd lean towards waiting and seeing, especially since you've been feeling better since stopping Synthroid. Maybe see what the next blood tests say, buying time to get to know the doctor better.

[Kerry1976]

I am coming to this thread very late, but I also have Hashi's. I had to fight my PCP just to be tested. It was my psychiatrist who actually put all the pieces together (long term hypo, colitis attack, etc.). One thing that may help is going gluten free. Apologies if this has already been brought up in this thread. Thyroid issues are simply miserable, as is Hashi's. it is hard to deal with a moving target.

[Brandi]

Just this past week I was putting lotion on my face and neck when I noticed a large mass on one side of my neck just above my collar bone. The rush of fear that passed over me almost took me down to my knee's. And I was out of town to make things even worse. My husband looked at it and felt it as well and said " Well we need to get this looked at right away" and looked me in the eye's and said " DON'T Worry". Ha that was not easy!! We got back from our business trip on thursday and I was in the Dr's office the very next morning first thing. She took one look and felt my neck and said "yup that is your thyroid". So now I am doing the waiting game. Did a blood test on friday so hopefully I will find out results tomorrow then have a ultrasound on thursday.
I have had several issues the past few years that make me think it was all leading up to this though my blood test were always normal. I have read that your levels can be normal but you can still have slight thyroid issue's.
It does run in my family, mother, grandfather and great grandmother all had issues. Hoping if this is it it will explain things like, my moods,high bp, lots of hair falling out (I have a ton of hair so that is not an issue really) dry skin, sleeping problems and the worst the adrenlian rushes and anxiety I have had for a few years now. It really would make more since. I was scared at first when the Dr said worse case cancer but from what I have read it is highly treatable. But I am not going to give it that energy and keep on the posative side. It is amazing how common thyroid issues are. Glad this thread is here.

[indysteel]

Oh, Brandi. I'm so sorry. I'm glad you're getting an ultrasound, along with the bloodwork. I hope they reveal what's going on and that you can start treatment soon. Keep us updated, okay?

[Brandi]

I am glad I am doing something about it. I can be a chicken when it comes to Dr's but I am taking this seriously. I am getting myself informed but not too much because I know you can freak yourself out if you read to much before you even know anything. Keeping myself busy every day is the key. Though my energy is not to great and we are having super rainy weather for days now.
Staying in good spirits but I am getting a massage tomorrow morning because the tension in my back and muscles needs to be released big time.
I am with good friends this weekend and hubby has been a sweet heart about helping me put up christmas decorations. Yup keeping busy. Will ride my trainer tomorrow get a good hour in that should help too.