[ChristinaDe]

in reply to: Benadryl for eye swelling? #1177625

😮 I learn something new everyday! Just read through this thread & Laura mentioned iodine in her vitamins. Doggone it, mine too! Hmmm.

Thanks for mentioning that little tidbit! My eye dryness & soreness have pretty much gone away, but I have a fluid bag that collects under my left eye & I’d love to shrink that baby!! I’ve been trying everything I can think of, including decreasing dietary salt.

[ChristinaDe]

in reply to: Anybody have this? #1177707

Some people have eye issues before they have thyroid symptoms. Those folks have their thyroids & are receiving none of the thyroid treatments or hormone supplements. A Graves’ eye specialist discussed this in one of the videos on the Foundation’s Facebook page. There just don’t seem to be any absolutes with Graves’, especially regarding the eyes (his words). Complicates everything.

[ChristinaDe]

in reply to: Hair loss and doctor’s response #1177678

Dear “Inquiring Mind”…:lol:

Oh, and I can so remember those foggy days!

Yes, I had TT done. February 1st of this year. My original plan was to seek remission with ATDs. My doctor & some of the research that I was reading suggested that remission was unlikely in my case, but I was still going to give it a try. Two things changed my mind. One – despite “stabilizing” with “normal” levels, I required the ATD, a beta blocker, prescription Vit D, and a tranquilizer. While my heart rate & tremor improved, my palpitations, anxiety, and cognitive issues (the fog) worsened. I also became very depressed, which was not a problem for me prior to treatment, to the point of feeling like I couldn’t take it anymore. Apparently this happens to some & not to others. Two – I had a large goiter and 2 large nodules. Although the nodules were non-toxic, they were large enough that they were going to require careful watching & possible surgery later no matter how the rest was going. At that point I was so done with all the doctors, labs, meds, moods, anxiety and fog and I simply felt that I had no quality of life left and was no longer sure that (in my case) waiting out a possibility of remission was in my best interest (even though I wanted that so badly & it seemed to happen for so many others).

My TT went very well. No more anxiety or cognitive issues since. No more heart issues since. No more tremors, nausea, or general malaise either. I did have a short bout of low calcium levels which were uncomfortable for a few days since my parathyroid glands had fallen asleep. The only thing I had to do for that was take calcium gummies until they recovered. That worked very well & the parathyroids became fully functional very quickly. I no longer take the calcium or prescription Vit D. I came off the ATD and tranquilizer the day of surgery. And I came off the beta blocker about a week later. Today the only med that I take that I didn’t take before Graves’ is my thyroid hormone.

The only other thing I’ve had to deal with is the expected thyroid crash. When they first begin your thyroid hormone, you still have a bit of your own thyroid hormone stored up. Once those stores are used up, it is typical to need an increase in your med dose to compensate. To minimize it, my surgeon started me on my thyroid meds the day after surgery. My crash came late, but it came. It’s not been horrific, just some hypo symptoms that require an increase in thyroid med. (The first dose chosen is just a best guess sort of thing anyway.) So at the 2 month mark I’m increasing my dose for the 1st time & seem to be responding very well. Hopefully this will be the only adjustment. We’ll soon see. I have to say though, that mentally I feel pre-Graves’-ish. Just feeling a bit lethargic with some joint pain from the temporary hypo state.

As for post-op support, I needed the typical help that follows any surgery under a general. I really only needed that for the first week or so. The pain was mostly in my throat from the breathing tube, but I did have some tightness and mild hoarseness for a few days. I think I only took the narcotic pain reliever for 2 or 3 days, then nothing. At 4 weeks my scar was flattened out & pale & now I can barely see it. I have to point it out to others for them to see it.

So my experience was good. No complaints. But it was tough getting there! I did what you’re doing now. I listened to the good stories, and the bad. I carefully considered all 3 options. And then I chose the one that best suited my values and mental state, and I haven’t looked back. I honestly have seen people who are just as happy with their decision to remain on ATDs for as long as it takes & others who are happy that they went with RAI. I knew that I was at the point that I had to go for definitive treatment. I’d lost hope and the ability to cope with the highs and lows and waiting. I talked to 3 physicians and a therapist to get to my “best” option.

By the way, every single one of your concerns is completely valid!!!

[ChristinaDe]

in reply to: TT = anxiety reduction? #1177643

You’re doing the right thing!!! You’re asking good questions, taking everything with a grain of salt, keeping an open dialogue with your physician, and prioritizing your own needs and concerns. And most importantly, you’re doing everything you can to make an informed decision…the one best for you!

I really hope that you feel better soon!

[ChristinaDe]

in reply to: Well, here goes! #1173597

It’s all very confusing. I actually had a thyroid storm w/ normal FT4/3 and a TSH of .01!

Now I have hypo symptoms w/ a TSH near 14 and a normal FT4/3. My FT4/3 has never moved out of normal range; my symptoms have always followed my TSH around. I guess I’m a freak case. In any event, we test all sorts of things…but we treat off my symptoms which closely align w/ my TSH. If we waited for my FT4/3 to go out of whack, I’d still be sick as a dog.

I once heard an MD lecture on this very topic. In its hyper state it’s called subclinical hyperthyroidism & the symptoms can be just as severe (or sometimes even more so) as those of overt hyperthyroidism. Depends on the patient. There is a hypo version as well.

Another interesting thing I learned along the way is that how symptomatic or sick a person is may not be in direct alignment with their numbers. For example, someone may have horrific hyper symptoms w/ a TSH of .03 and normal FTs, while another person feels no symptoms w/a TSH .01 and abnormal FTs. Just more evidence that thyroid patients can’t be treated on labs alone. So much about this disease just depends on the person.

[ChristinaDe]

in reply to: TT = anxiety reduction? #1177641

Hi Sue! This is just my experience…but the short answer for me is a resounding “YES”…surgery reduced my anxiety. Even now, while going through my 1st post-surgical med adjustment for a hypo swing (I’m roughly 2 months post-op), I have no anxiety, depression or cognitive symptoms. Those were my worst symptoms going into it.

I know that there are probably some who continue with anxiety post-op, we’re all so different in our presentation & in what works and what doesn’t. I’m just ONE experience. But in my case surgery put a quick end to my mental symptoms. However, I never had any issues w/ anxiety pre-Graves’ & hyperthyroidism so I feel pretty confident that mine was 100% related to my sick thyroid.

[ChristinaDe]

in reply to: Well, here goes! #1173594

Hypo for me? TSH almost 14. (After a late, but expected, post-op plunge.)

Cold (the kind you feel when you’re getting IV fluid)
Weak muscles & painful joints – very painful at times
Lethargic & unmotivated
Nightmares that are as crazy as those I had while on ATDs & beta blockers!
Instant 3 or 4 lb weight gain, all in my belly
Hair falling out a little quicker
Facial puffiness
Skin & hair dry – almost overnight

I have avoided naps, and I still do things, but I seem to pay for it when I do (with increased muscle & joint pain). Amazingly, my mood & cognition seem pretty unaffected (which were my chief issues when I was hyper).

I’m 5 days into an increase in my synthroid dose & I swear that I can already feel a mild difference!

[ChristinaDe]

in reply to: Hair loss and doctor’s response #1177676

www12 ~ I had a very similar experience w/ my endo. Info that contradicted current knowledge regarding thyroid disease & Graves’. Info that contradicted medication information inserts. On & on it went. And when I questioned the discrepancy, I was faced w/ a similar reaction – namely, that I was somehow being difficult or just not getting it or trying to inappropriately blame everything on a thyroid when it had nothing to do with it. Etc. It still makes me angry when I think about it. And it was all couched in a condescending tone.

I also had problems w/ feeling better while on medication to lower thyroid levels. When I asked the question you asked (“If you can’t get me to my sweet spot now, how will you do it once my thyroid is radiated or removed?”), I got the same basic response that you did. Made me feel like I was being “difficult” or “psycho”. I’ve since left that endo’s care.

I later asked my primary care & thyroid surgeon that same question. Their response? As long as the thyroid is there & sputtering along, it has the potential to wreak havoc on my dosing. Some people do ok if their thyroid produces hormone at a consistent rate. Others, like me, have too many swings from their thyroid & will need more frequent adjustments if they leave the gland active. So let’s say they get me to my sweet spot, but then my thyroid gets crazy active. Then they lower me to compensate for it, and then my thyroid slows a bit. Both said that if the thyroid is completely killed off through radiation, or completely removed, then dosing becomes a little more straight forward. That made a lot of sense to me. Of course, then you don’t have a thyroid anymore either. Choices, choices. Who’s right & who’s wrong? And how does anyone find that magical patient/physician relationship in endocrinology? For now, I’m working w/ my PCP & surgeon. I’ve had much more success & validation since doing that.

[ChristinaDe]

in reply to: Hair loss and muscle stiffness #1177507

I feel your pain Shelly. Literally!!
I’ve had each of those symptoms twice, first separately and then together. Muscle & joint pain when my calcium levels were very low and I’d just had my TT, rapid hair fallout when I was on ATDs, and both when I recently went hypo. Lab work revealed the cause (and fix) of my muscle/joint issues both times, so hopefully you’ll get your answer quickly!

The hair fallout is probably trickier. There is so much that can cause that. Being hyper, being hypo, beginning thyroid replacement (the Synthroid site states that some may experience thinning hair during the first few months of treatments, but that it should resolve on its own once the patient has adjusted to the med), fluctuating hormone levels – even when they’re moving from bad to good! And the list goes on from there. The good news is that I’ve seen many people say that the fallout stops short of balding and that it eventually stops altogether most of the time once the root cause is addressed. I think until our thyroid levels are normal and stable for period of time, that a lot of this can be attributed to that.

There’s a great video on the Graves’ Foundation Facebook page. It’s from the Graves’ conference and I recall the female speaker addressing ways to deal with some of the hair issues we may experience. Maybe Kimberly or Shirley or someone else knows which one I’m speaking of? Had several great suggestions that you may find helpful. Actually, I’ve seen 2 videos. One from that doc at the conference and one from a cosmetologist. If you get the time & have a FB account, you may want to explore that page. Lots of interesting stuff.

Hope you feel better soon!

[ChristinaDe]

in reply to: Jump in TSH #1177449

A teeny thing!

[ChristinaDe]

in reply to: Jump in TSH #1177447

Shirley ~ I can see why TED would be worse than the Graves’ thyroid issues. They are so much more complicated, there seem to be even fewer qualified, interested specialists AND there is so much wait time! I have mild TED, very mild…but I’m still active. But it does scare me more than the thyroid issues do and as you all know, they scared me to death!

A nurse-driven model could really work, couldn’t it? I’d go if there was one here! Especially if I knew it was someone INTERESTED in the disease and its nuances…the whole picture. Someone who understood how it FEELS, not just how it looks on a lab sheet. Hmmm…

As for dissertations in this field, I can think of so many. Wouldn’t know how to choose. LOL!!

[ChristinaDe]

in reply to: Introduction & A Question #1177488

Hi Sue! Sorry to hear that you came out of remission. What a disappointment that must be…and to go through this Graves’ thing twice…well, yuk! But at least your body has already demonstrated an ability to beat Graves’ at its own game.

About your situation: While hyper, I was very sensitive to products with pseudoephedrine and anything in the “caine” family – like lidocaine, etc. They made my heart race & my BP go up. I’d also get dizzy and panicky. I haven’t tried any of them since I’ve had my thyroid out, so I don’t know if that has changed for me yet. But I am curious to see since I had no problem with any of those ingredients pre-hyper.

Like you, I’ve always had a low BP too. While on ATDs mine tended to get high. Awful feeling, isn’t it? And my heart palpitations worsened. The beta blocker really did do wonders for that part. Do talk to your doctor to get his thoughts on the matter! In the meantime, I’m glad that that you’ve begun a beta blocker and that it’s working for you. Take care or yourself. The beginning seems to be the hardest part.

[ChristinaDe]

in reply to: Jump in TSH #1177445

Alexis ~ Now that you mention it, I do recall my surgeon warning me preoperatively that most people experience a “crash” once their natural thyroid stores are depleted. He said that if it’s going to happen, it usually does so at around the 2 week mark. So when I got to 3, then 4 weeks without it…I thought I’d escaped it. And then I forgot all about that phenomenon! Thanks for reminding me. I’m just shy of 2 months post-TT, so I’m within the timeframe that your endo described. That makes a LOT of sense!! Which makes me feel so much better about the whole thing. My surgeon also said what you said…that in about 2 weeks I should see a reduction in my symptoms but shouldn’t expect to see a full result until 6-8 weeks out. So we plan to retest then, unless there is no reduction in symptoms. Then we’ll do it at 3 weeks. I’m pretty far out of range, so it may take a 2nd bump in dose but maybe not. All in all, I can’t complain though. I had almost 6 weeks of feeling great and this sounds like a short-lived and temporary bump in the road. And for me, hypo is nowhere near as bad as my hyper was. Even with a TSH of nearly 14. Can I ask you a question? I’ve read in a couple of places that a good, but general rule of thumb for Synthroid is 1 mcg per pound of body weight. My body weight is 125. So I’m thinking that may explain why 100 mcg didn’t work & looking ahead I’m wondering if I should expect that 112 likely won’t yet be my final dose. Is your dose close to your body weight? I guess I’m looking for the anecdotal…

As always, great to hear from you! I seem to be closely following in your footsteps. Before TT I read so much about the horror of it all. But in you I saw what happens when the surgery course goes well. Minus a couple of bumpy patches, yours seemed to go very well and that encouraged me. Mine has followed suit & I am so thankful for that. I can still say that, even with this sudden rise in TSH & hypo symptoms because I know they are temporary & I know what feeling good feels like thanks to the weeks that preceded the drop. I fully expect that in 2 weeks that I’ll be able to get through my Pilates class with a whole lot less pain than I felt last week! And that it will only improve from there!!!

Kimberly ~ I already have a master’s in nursing (but haven’t worked in the field in over 5 years), so I’d only need a post-graduate certificate to go the NP route. Even that would likely take 1 1/2 to 2 years due to the clinical hours needed. But I’m seriously considering it. Especially now that the anxiety and brain fog are gone! I’ve already begun to envision a practice model that I like. There seems to be a real need for a different model of care. I’d give anything to see a one-stop shop for all the needs we thyroid and Graves’ patients have. And perhaps something that allows us to handle labs and med adjustments through email. I don’t know about everyone else, but docs don’t even touch me when I go in to see them. They just talk & listen. Those visits could be done telephonically & through email. Saving time & money. Something constructive to think about that makes me feel some “control” around the issue of Graves’, even if it remains in the dream file. But first I suppose that I need to get my own TSH down!! Nurse, heal thyself!!!!! LOL

[ChristinaDe]

in reply to: Jump in TSH #1177442

Kimberly ~ Yes…the surgeon did recommend an increase in Synthroid, to 112 mcg. He also ordered a repeat in labs in 6 weeks, but said that if I’m feeling NO better in 3 weeks to go ahead and repeat them early. So we’ll see how that goes. Still shocked that I felt so good for the first month post-TT, with such good labs to go along with that, and then BAM! Hit a brick wall & labs reflected it!! My muscles hurt and the joint pain is unbelievable, along with the fatigue and general malaise. So now I wait to feel better again.

Shirley ~ Both my primary care & my surgeon tried calling the endo to get me in earlier, but to no avail. New patient appointments are nearly impossible to get. And I’ve been on the cancellation list since December. No luck there either. In fact, I originally had a May appt scheduled (did that back in early January) – but that has since been changed, by them, to the end of June. Instead of canceling my surgery, my surgeon agreed to follow me until stable and then to refer me back to primary care (who has agreed to follow me as long as it takes). The endo who diagnosed me fired me as a patient just before surgery…she took issue with the number of questions I was asking…felt that I was questioning her medical competence. It all got pretty ugly. Strangest thing I ever saw. It felt like she was more emotional than I was! So the surgeon & primary care are trying to help me out in spite of this. I did ask the surgeon to include a T3, along with the T4 & TSH on my next set of labs & he agreed to do it.

This endo shortage, and the shortage of endo docs that are interested in Graves’ is really complicating my life & the lives of so many others I see on here. It really makes me want to go back to school for my Nurse Practitioner license…and to start a speciality practice for thyroid issues. But at 51 I’m not sure that’s practical anymore!

[ChristinaDe]

in reply to: Frustrated w/ Symptoms #1177279

Quickcraze, sorry to hear about your symptoms. I had the very same symptoms for years & was told multiple times that I was “borderline” hyper so didn’t need treatment. I saw cardiologists & every other specialist you can imagine including psych. Everyone kept saying that I didn’t have any issues that they could treat. My symptoms continued & I felt crazy and like a hypochondriac or something. A few months ago I saw an endocrinologist who also said I was “borderline” hyper, but since my symptoms were classic hyper symptoms she would treat me. The medical term for borderline hyper w/ symptoms is subclinical hyperthyroidism. Some don’t want to treat that, some do. In my case my free T3 & T4 were normal, my TSH mildly suppressed. Antithyroid meds quickly brought my TSH into normal range but I didn’t feel good, just a different sort of bad. So then they wanted me to do surgery or radiation…I remember feeling very scared and frustrated. I mean, both options sounded extreme, my condition was “borderline” by labs, and my labs were normal on ATD’s and yet I still felt bad. So why treat at all? I was afraid that I’d take one of these drastic steps and still feel bad. Eventually I couldn’t take the symptoms anymore and decided to go forward. I opted for a thyroidectomy. That was 2 months ago. I have had ZERO symptoms related to my thyroid ever since! The moral? Borderline or subclinical hyperthyroidism CAN cause symptoms in some people, extreme symptoms even. It did in my case.

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