[Bella1]

in reply to: Feeling fairly hopeless #1183286

Linda,

Just to pass on a little hope, 2 years ago I was where you are. I was diagnosed with Graves (TSI 417%) and Graves eye disease. I was on higher and higher doses of Methimazole, I couldn’t relax or sleep and I was constantly irritable. It was horrible and I came to GDATF several times for advice. In fact, I learned more here than I did from my drs. Well, last Dec my thyroid started growing like mad until it was squeezing my throat, choking me and making it very difficult to eat or drink. I was prescribed Lugol solution (to shrink my thyroid), was scheduled for a thyroidectomy 2 weeks out and began preparing for life after thyroid. A few days later my endo called to tell me that I had gone into remission and that I had become very hypo (TSH 125) from the Methimazole still in my system, and that had caused my thyroid to grow to compensate. After both 6-mo and 1-yr bloodwork (all normal, including antibodies) I am still in remission with no set-backs. Dr Stan (Graves Specialist at Mayo) says I’m probably one of the 40% who permanently go into remission and that I only need follow-up bloodwork once a year. YEEEEEEEEE HAAAAAAAH!!

So hang in there. Everybody’s experience is different and unpredictable. Good luck.

[Bella1]

in reply to: Update: 1 Week Post-TT #1176848

ChristinaDe wrote:

Thanks for posting your experiences with TT. I too hope to have TT to resolve my issues, and am nervous about it. It helps to know what to expect. Good luck!

[Bella1]

in reply to: Anyone know about low globulin with Methimazole? #1176813

Kimberly and SNelson

Thank you both. I was just wondering what this meant. When I asked the office they told me not to worrry, that everything was fine.

[Bella1]

in reply to: New to forum and GD #1176680

Please consider all 3 options thoroughly before you let your Dr push you into something, without your knowing all the possible consequences. It most likely can wait a few weeks. This website has given me so much information, that based on my own needs, I’d go TT.

[Bella1]

in reply to: Help, desperately please if anyone can.. #1176465

vanillasky wrote:

You should really have a career in writing, if you don’t now; you can evoke emotion through words in an amazingly intimate and overwhelming way (think Frost or Poe)! WOW!!

[Bella1]

in reply to: Anyone feel better AFTER thyroidectomy? #1176652

ChristinaDe wrote:

.

I’m new to all this too, but I do remember a comment my endo made that would be relevant to your situation. He said that the severity of symptoms in hyperthyroidism are very often inverse to one’s actual thyroid levels. Some of the worst symptoms occur in patients with the lowest levels.

[Bella1]

in reply to: my dosing style experiments #1176566

catstuart7 wrote:

the perfect dosing scheme

A few weeks ago when I was suffering so much, I too went to 3 x day because I was having dips between 2 x day doses with Methiamazole. 3 x day was magic for me (that and everyone’s support).

[Bella1]

in reply to: Taking Levoxyl and Prevacid. #1176522

shasha wrote:

I was shocked as well when I found out, because I’d been told that ranitidine is so safe that it’s regularly given to women during pregnancy. Even with prescription supplementation my numbers were not recovering until I was taken off ranitidine. Then, it was heavy supplementation, B12 shots, and Prescription Vitamin D2 at 100,000 iu per week to get me back to normal. I am still on D2 50,000 iu /wk 15 mos. later.

I spent nearly 3 years trying to get my PC to figure out what was wrong, while she treated me like a hypochondriac. So I finally went to an endo on my own because I was exhausted, depressed and miserable all the time. After he’d checked me for every absorptive disorder, he noticed that I was taking ranitidine and told me that some patients on it were having trouble absorbing magnesium and some other nutrients. So he took me off it and started me on very large doses of vitamins and iron. It was more than 3 mos. before I even had any gastric reflux, nearly 6 mos. before most of my nutrient levels started to return to normal, and nearly a year before I got above 50 on vitamin D and my cortisol returned to normal range. I think the length of time (11 years) I took ranitidine played a large role in the severity of my deficits.

I really don’t think a lot of people are aware of this. Obviously my old PC was not, even though nearly every month she’d tell me something else had dropped below normal levels. She just kept having me add more OTC supplements, which did nothing for my levels. Apparently, you have to have to be able to produce enough stomach acid to break down larger-moleculed nutrients.

[Bella1]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176401

Hi Susan,

I know what you mean. Suddenly I’m not “me”. It’s almost like a form of agoraphobia. Now I’m an extrovert who doesn’t want to be around people. I also try to deal with everything myself. Not possible when you don’t have the info you need, which is why I was also motivated to find this website. I’m no expert, as I was just diagnosed the end of September, but I’ve already found an immense amount of info and support here. For me, just finding someone who had Graves and was overweight besides me was very validating. Yesterday I saw that as many as 15% of Graves patients have weight gain due to Graves. Who knew?!

Last week I too felt kinda crazy and like I’d become someone I couldn’t relate to or control. But people here said wait til your meds stabilize, and they were right. In one week I’m so much better. So all I can say is hang in there. I don’t yet know much more than that.

[Bella1]

in reply to: Taking Levoxyl and Prevacid. #1176518

Just to let people know what can happen, I was on Ranitidine (Zantac), which is milder than Prevacid, for 11 years for a hiatal hernia. I got more and more tired over time and my PC couldn’t explain why, but then my magnesium and calcium levels started bottoming out. So my PC told me to take supplements. Then came a significant drop in vitamin B12, Vitamin D2 & D3, and then came the anemia. But the startling part was the sudden upshot of cortisol. After telling me to take more and more supplementation and testing me for every absorptive disorder their is, an Endo suggested that proton pump inhibitors can prevent all absorption of the larger-moleculed nutrients and to come off Ranitidine. It took one year for all my nutrients to reach normal levels again, especially Vitamin D, and for my cortisol level to return to normal. Apparently the pumps were so completely inhibited that I was actually starving for the larger moleculed nutrients. In fact, my Graves was masked for a long time, because several nutrients that I was incapable of digesting are required in the manufacture of thyroid hormone, so I tested much lower than my actual values.

Please be very careful taking any medicine that inhibits digestion.

[Bella1]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176398

catstuart7 and Kimberly wrote:

Thank you both so much as this is exactly the question I’m trying to answer. I know its because its all new to me, but I’m trying to become as educated as possible to find the best solutions. I appreciate the time you are both taking to explain things to me.

And Kimberly, I am sorry I posted info inappropriately about the study I found. I will be more vigilant in future.

[Bella1]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176390

Catstuart7

Sorry. every time I hit the tab key I get kicked out of the message I’m posting.

[Bella1]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176389

Kimberly wrote:

In an attempt to find some answers about TSI effects and remission, I came across an article yesterday at Thyroid.org in the New Research section which has a new study (backed up by 2 previous studies) that shows that Graves’ TSI also affects thyroid-like tissue in the brain. I wasn’t able to find the link to the study when I went back, but they were able to show damage and diminished blood flow to the right frontal lobe (rational thought and decision-making), which may be the cause of the emotional and cognitive side effects of TSI. The worst part was that they believed the damage done to the brain tissue may not be reversible even when or if TSI is reduced. So we may have more to worry about than just eye and heart damage from sustained high levels of TSI.

Kimberly, would you know if TSI reduction is more likely with drug, RAI or TT treatment? Because that seems to be the imperative in Graves treatment.

Thanks.

[Bella1]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176387

catstuart7 wrote:

Those ranges are pretty similar to those for my lab so yeah pretty darn hyper! I hope you can get in soon and see where you are at today. I went from hyper to down near hypo in the span of only one month on PTU – change can happen fast. Many docs in the beginning do labs at least every six weeks.

Thanks for the feedback. I’m on a waiting list this week to get in to see a new endo. But I really am starting to feel more balanced in just the few days since I last posted.

I am already considering surgery because it seems to me the best protection against hyperthyroidism, is low thyroid. I mean, eye, soft tissue and heart damage are huge risks to take. However, if those issues can be prevented from happening, it might be worth the risk. I will give management a go first, though.

Also, I have a question. When my TSH/T3/T4 feedback loop is managed, does that guarantee that my TSI is reduced? If I can’t get my TSI to reduce, does that mean that the possibility for damage continues? I know you’re not a doctor, but I was wondering if you knew.

Thanks.

[Bella1]

in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176386

Kimberly wrote:

Hello and welcome! A couple of comments…

Thank you for the information. I had been told that T3 and T4, when high reduce TSH to nothing but I didn’t realize why. That is already more than my endo explained.

I am taking my meds regularly now and am starting to feel some relief (a little more balanced). Thanks again.

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