[LynneB54]

in reply to: thyroid illnesses and diet coke #1075430

Hi Cathy,

Thanks for the quick response. Your point about missing out on nutrition when drinking a diet drink is well taken, but for me, it’s a good way to limit calories – and I like the taste! ” title=”Smile” /> I usually drink several per day and haven’t noticed any problems. Do you know of any valid studies that show diet drinks have an adverse effect on health? I know there is lots of anecdotal information, but I’m wondering about some well run studies; I’d think they’d have to be out there. Anyway, I’d sure miss my diet cokes if they’re really harmful!

Lynne

[LynneB54]

in reply to: Hyperthyroidism vs. Graves #1075673

Hi Cathy,

You had asked me to let you know what my family doc said after I saw him, which I did last Thursday. He called last night with the results of my bloodwork, and is comfortable with a diagnosis of Graves’. There were no antibodies but with my low TSH (.004) and slightly elevated FT4 (11.83) he didn’t think there is any doubt. So we’ll go with that.

He started me on a beta blocker last week and that has been a tremendous help. We discussed my treatment options in depth – the pros and cons of each – and I’m having a tremendously difficult time making a decision. He said I can afford to wait but at some point – I have to decide.

Okay – on to you. I’ve read some of your posts and I just can’t believe you’re not getting the support at work that you should. Of all people – other nurses and doctors should understand better than just about anyone else! Maybe we just have to be going through it ourselves before we can really understand what someone else is experiencing. But still – peers really should be more understanding. Your answers have really helped me, so I hope you get the same support here as well.

Sounds like you’re doing really well with your diet. It isn’t easy!! You should be very pleased with the changes you’ve made. Is weight gain when hypo a given? And how much?? Is there a ‘normal’? Well – keep up the good work. Don’t know anything about lipids but hope you can get those to the level you want. One thing I’m learning is that thyroid problems change everything! ” title=”Smile” />

Anyway – good luck with the stuff you’re dealing with too.

Lynne

[LynneB54]

in reply to: Just dx with Graves and have a few ?? #1075468

Hi Tracey,

I can’t answer the technical stuff but yes!! Feeling tired and achy are definately symptoms! I have them too. My thighs and upper arm hurt, and I sometimes feel almost like I’m coming down with the flu, but don’t.

Good luck to you – this is a good place to learn all kinds of good info.

Lynne

[LynneB54]

in reply to: Hyperthyroidism vs. Graves #1075671

Hi Again,

Wow – so your doc isn’t sure if you have Graves’ or toxic multinodular goiter either. That’s what my endo said but the family doc said Graves’ – I’m hoping to get a firm diagnosis. Anyway – why the recommendation for surgery? Is that your preference or the doc’s? Just curious.

Well – I guess the most important thing I’ve learned here is that "one size doesn’t fit all" when it comes to treatment. As others have said several times – each person has to pick what is right for him/her. So I’m glad you’ve made your decision and I wish you all the best. I’d really like to know how it all works for you. I may end up with the same option.

Good luck on the 18th!
Lynne

[LynneB54]

in reply to: Hyperthyroidism vs. Graves #1075669

Hi Tiffany,

We’re really faced with some pretty difficult decisions, aren’t we? I was ready to go the medication route until I got "The Complete Thyroid Book" which has been very helpful. It says that in general it’s best to avoid antithyroid medication if your doctor knows for certain that you’ll be having RAI and your thyrotixic symptoms aren’t too servere. How does the doctor know for certain, since it’s possible (even though a slight chance) that we might not need RAI after medication? I’d like to try for a full remission too, but worry about the side effects (aplastic anemia and the need for a liver transplant) with the medication. Even though the chance of that is only 1% I’d sure hate to be in that 1%! Those are some pretty serious side effects. On the other hand, the book says that Graves’ disease can be easily controlled with the medication; that’s good news! But from what I understand – the medication can’t be taken forever and when it’s stopped – about 80% go hyper again. Sooo – consequently I sit here going back and forth, back and forth wondering what to do. I’m glad you’ve made a decision; I think that would be a relief.

I’m with you – I really don’t want to deal with the symptoms of being hypo. I’m physically active and finally have my weight under control and don’t want to have to fight that battle more than I already do. At 54 it’s not easy under the best of circumstances!!

One other thing – the book says that if you have TED the symptoms get better with medication over other treatments. Just thought I’d add that, since if I remember from an earlier post you apparently have some eye problems.

Anyway – best of luck and keep posting; I’d like to know what your primary doc says.

Lynne

[LynneB54]

in reply to: Hyperthyroidism vs. Graves #1075667

Hi Bobbi,

Thanks so much for the information; it is always better to know more. My family doc said basically the same thing – whether I have TMNG or Graves’ doesn’t matter as far as treatment goes. However – I insisted that I wanted a diagnosis (that’s not too much to ask, is it??) He said I could have a biopsy (which I naturally declined) or just wait until my symptoms get to the point that the diagnosis would be obvious. He and I didn’t like that option either! (We’ve known for several months that I’m hyper, the only question is why.) But he did order bloodwork again and checked for antibodies. If I understand that – if it’s positive then there is no question it’s Graves’ but if it’s negative it doesn’t rule it out. Do antibodies come and go, or just not show up all the time?

Here’s what he said about Graves’ vs TMNG: TMNG comes on slowly over a long period of time but Graves’ has a much quicker onset. He said he thought I’d probably gotten sick over the summer, and I agree. (Endo said I’d been sick for years, which was news to me since I didn ‘t feel any symptoms before about May or so). I first saw the family doc in early September, and Thursday he said that he could tell I’m much sicker now. He still believes I have early Graves’ but is checking for thryoiditis as well (feels that is unlikely). He started me on a beta blocker and that has really helped. So now I’m just waiting for the blood results and hope I get an answer.

Regardless of the outcome, I have to make a decision pretty quickly about a treatment option. The endo, family doc, and radiologist friend all feel RAI is the only viable option. No big deal, according to them. However – that’s not what I’m seeing from other posts. Just what can I reasonably expect from that treatment? Will I have problems from the treatment or will the problems come (if they do) from being hypothyroid? I’m hearing some frightening stories about the difficulity of getting regulated from people who are hypo and it worries me. Does everyone have problems once they’re hypo? I fear weight gain, lethergy, depression, etc.

Is there any reasonable chance for a remission, meaning back to a normal thyroid? The odds on the antithyroid medication seems pretty low. As I understand it – I’m going to be hypo anyway – the only decision is how I’ll get there.

None of the doctors I’ve seen/talked to feel this illness is a big deal or very serious, but that’s not what I’m learning from this forum. The docs seem to treat it pretty casually – just do the RAI, take a daily pill when you’re hypo, and you’re back to normal. If only!!

This is all pretty scary stuff. Guess wishfull thinking isn’t a treatment option, is it? Oh well….

Thanks,
Lynne

[LynneB54]

in reply to: Just diagnosed with graves. #1075514

Oh boy – can I identify! You have pretty much described exactly what I’ve been going through since August. It’s really hard to be an independent woman and all of a sudden you can’t do the normal things you’ve always done. I’m lucky to have a very supportive husband – but still! I don’t like asking for help to do the everyday stuff I’m used to doing. I’ve had the same physical problems you’ve experienced and they’re horrible. However, as of Thursday my doctor put me on a beta blocker and I can’t tell you how much better I feel! The hand tremors have stopped and the "twitchy" feeling I had inside has stopped as well. And I’m not having heart palpitations and a racing pulse anymore. My body is calmer now, and I’m very grateful for that. I still feel pretty awful but it is better. So go ask your doctor for a prescription; I think it’s a pretty standard therapy and it will help protect your heart.

I’m scared too. None of this is easy, but the people here are very helpful and so supportive. It is good to know that there is a place to turn with people who understand what we’re going through.

Best of luck to you,
Lynne

[LynneB54]

in reply to: Daughter just diagnosed #1075680

Hi Janet,

I’m new to all of this too, so I can’t help you with the Graves’ aspect but as the mother of a (now adult) child with a chronic illness, I understand how you feel. Your daughter isn’t the only one going through this – your whole family is! I hope you can find a support group of parents with children with disabilities/chronic illnesses so that you have a place to talk about how tough it can be. If not – or maybe in addition to – find a good counselor that you can connect with. The help he/she can give you will be invaluable. You and your husband will need help along the way; don’t be afraid to ask for it!

Best of luck to you,
Lynne

[LynneB54]

in reply to: Attitude #1075603

Hi Jeff,

I think others have dealt with how you might be able to help your wife better than I can, but I’d like to add a little something about counseling. Just like physicians, counselors come in all shapes and sizes. Some you’ll like, and some you won’t. It’s important to find one that will work for you and your wife. If you don’t like the one you’ll see in three weeks – find another one!! And finally – don’t expect a quick fix. It takes time to rebuild a relationship, especially when one spouse is sick. Counseling is hard work and requires a lot of listening and honesty but it can work wonders if you’re willing to make a commitment to it.

Best of luck to you both,
Lynne

[LynneB54]

in reply to: Hyperthyroidism vs. Graves #1075663

Hi Ski,

Thanks for the quick response. Coincidently – I saw my optometrist in mid August for a routine check up because I felt my vision wasn’t as good as it should be. She said everything looked good, but prescribed OTC eye drops for dryness. As I said, those have helped. This visit was just prior to learning I had thyroid problems. So it was lucky I went; now I have a recent visit to compare to if I start having other problems.

Why wouldn’t my eyes be closing all the way at night? How would I know? I’ll ask about the eye gel you mentioned; the optometrist is a friend.

The doctors seem to treat this as a simple disease that’s easily treated and managed but it’s apparent from what I’m going through as well as the others on this board that isn’t the case. I do appreciate the help from here so much; it is such a valuable resource.

Thanks again,
Lynne

[LynneB54]

in reply to: Hyperthyroidism vs. Graves #1075661

Hi Cathy,

Thanks for the explanation – I understand better now. Maybe that explains what the endo meant when he said that Graves is caused by antibodies attacking the thyroid and TMNG is caused by a cellular response. I still don’t understand how he came to that conclusion so quickly; he didn’t explain other than to say that the 24 hour uptake on the scan has to be in the 70% range for Graves and my eyes aren’t bulging, so I couldn’t have Graves. My radiologist friend says that’s not the case, and I do. I’m anxious to see what my family doc says on Thursday; he’d originally said I have Graves as well and that’s why he sent me to the endo. I didn’t think getting a definitive answer would be difficult, although I should have known better. My daughter has Crohn’s and arthritis and it took several years to get her diagnosed.

And by the way – the endo never asked about any eye symptoms, but mine are becoming increasingly dry. If I wake up at night I can barely open them and it is painful when I try. I can’t wear my contacts overnight anymore, and have to take them out in the evening. Eye drops help some.

Thanks again,
Lynne

[LynneB54]

in reply to: Hyperthyroidism vs. Graves #1075659

Hi Ski and Cathycnm,

I just posted a reply to your responses the other day, and when I hit submit, it all disappeared. Drats! Anyway – thank you both for your help.

Cathycnm – I’m a little confused after reading your post. If my TSH is so low, wonder why the endo thought I had TMNG? Seems that my TSH would be high in that case. But if the TSH is high, how can a person have hyperthyroidism? I’m confused about the whole thing. Also – the scan showed no nodules so I wonder about the diagnosis of TMNG; I’d think some nodules would have to be present.

Ski – I took your advice and got a book; I bought ‘The Complete Thyroid Bood’. I know it must be good because the author is the Director of the University of Kentucky Thyroid Clinic. I’m a UK grad so anything from there must be good! ” title=”Smile” /> ” title=”Smile” /> Anyway, I find it to have a wealth of information. I think it will be a good reference to have through all of this.

Finally – I haven’t heard anyone mention nausea as a symptom of this. I have a constant low level that doesn’t interfer with appetite but it’s annoying. The doc proscribed Asaphex (spelling??) and that has helped.

Again – thanks for the answers. It is so wonderful to have a site to go to for answers and reassurance.

Lynne

[LynneB54]

in reply to: Hyperthyroidism vs. Graves #1075656

Hi Ski,

Thanks for the terrific information. It is helpful!

One clarification – when I said I wasn’t very sick, that’s the impression I got from the endo; certainly not how I feel! I’m feel worse now than when the tests were done. Today’s a good day, but yesterday was awful – and so it goes. I’m grateful for the good days and try not to get too discouraged with the bad ones.

As far as the meds go – basically I’ve been discouraged by the docs from trying them. I’ve been told they just mask symptoms and have serious side effects like liver failure, suppressed white blood count, etc. etc. If they’re pretty rare, that’s what I’d like to try since the RAI is permanent. From what I gather the meds put people in remission but it doesn’t always last, and then the only option (other than surgery) is RAI. Decisions, decisions…

Take care,
Lynne

[LynneB54]

in reply to: Hyperthyroidism vs. Graves #1075654

Hi Ski,

Thank you for the good information; I will see about buying a book this weekend to see what more I can learn. In the meanwhile – the endo I saw kept insisting that I could not have Graves’ because my eyes weren’t bulging. He repeated it three times. Well – he’s the doctor, but I’d read that bulging eyes were a symptom that not everyone has. He was adament that meant no Graves’. My scan states that my 24 hour uptake was 37%; I have no idea what that means. It also said there were no nodules. So – don’t know how the endo made the diagnosis he did. (I didn’t have a copy of the scan until after the visit was over or I would have asked him that question). Anyway – we didn’t click so I think I’ll stick with my family doc. I will certainly ask for the antibody test; he’ll probably want to do blood work again anyway.

Blood results in Sept show my T4 at 12 and my T3 at 33. My TSH was at .004. What does any of that mean? I know the TSH is low, but the T3 and T4 seem to be in the normal range. Guess I need to get the family doc to tell me. The endo didn’t seem to feel that any of it was very significant. So – if I’m not very sick then why the treatment with RAI – which seems to be a very serious treatment?

One last question about exercise. I sure don’t feel like doing much, but I do enjoy walking my dogs. I normally walk several miles a day, although I can’t go nearly as far anymore because I get winded and my legs hurt. I read in some of the posts that exercise wasn’t good at this point, but I didn’t really understand why. I would think it would help muscle mass from being lost, as well as providing the other benefits of walking. So what do I need to ask the doctor next week about exercise?

Again – thank you sooo much for the input. It really is so nice to have a place to ask questions where people have been through this before.

Happy Halloween,
Lynne

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