[ely2009]

#1070388

Hi Mels,

Sounds like you’ve have a rough time over the years. I’m so sorry you haven’t gotten to the bottom of it yet. It’s SO frustrating to try to live life when you are feeling unwell.

I’ve never had my antibodies checked. I was diagnosed with GD through the uptake test. But I do know that I had lots of the classic symptoms before my TSH dropped below normal. I had to fight my GP to recheck my bloodwork several times because like yo I knew something was wrong – and not just lack of sleep or depression. I knew it wasn’t in my head.

I’m new to this so don’t have many answers for you. but I wanted to let you know this is a great place for support.

Emily

[ewmb]

#1070389

I had lactose intolerance symptoms when I was hyper. Never had any problem with dairy before that. Since I had RAI about 6 weeks ago and my levels have come up to normal, I have been able to eat cheese with no problems. I haven’t tried ice cream yet.

ewmb

[Mels]

#1019257

Hi, I’m a newcomer to this. I apologise at the outset if I ramble on too much!
I am 36 years old and a mother of two children. In April 2008 I was diagnosed with Graves Disease. Prior to this, I had been feeling unwell & just not quite right. It all started in 2002 (a year after my 2nd child was born). My GP said it was exhaustion, I disagreed. Depression? Nope, not that either. I suffered insomnia, among other things, so I undertook a Sleep Study. That showed I didn’t sleep well but couldn’t tell me WHY. The GP found no answers so I went to a Naturopath where I was told I had a problem with my pituitary gland & did not digest food properly. I was given a whole lot of pills & had to visit the Naturopath every 2 weeks for follow-ups. This was costing me a fortune & I did not feel any better. My lack of sleep, heart palpatations, chest pain, joint pain, sweating, irritability, and shaky hands were getting worse. Also, I was losing weight, yet I was consuming a lot of food. So I went back to my GP and finally (in 2005) she did a blood test to check my thyroid & found that I was hyperthyroid. I saw an Endo who told me I was too young to have thyroid problems. After further blood tests he said I had positive antibodies, but my thyroid levels were getting within the normal range therefore it was burning out & he advised to not bother with a thyroid scan & to wait & see. I went to another Endo for a second opinion, & because my thyroid levels were normal, he also said to wait & see. My weight had dropped to 43kg (although I am only 5 foot so I was no where near anorexic!) & the Endo asked me if I was trying to lose weight? Are you kidding? I could not stop eating, I was hungry all the time. I went for 6 monthly blood tests at the GP to keep an eye on things. I did ask the GP why she didn’t test for antibodies each time, she replied, "Once you’ve got them, they don’t change." In March 2008, my GP went to another practice, so I thought I’d give her replacement a go. So at my check-up I advised that I have antibodies & the new GP requested a thyroid scan (eventhough my blood tests were normal). The result: increased uptake in a slightly enlarged gland consistent with Graves’ Disease. I was referred to a 3rd Endo who compared my antibody levels which showed a significant increase. She put me on Neo-Mercazole tablets but I went Hypothyroid. So I am not taking anything & still feeling lousy. The symptoms don’t last as long as they used to, they come & go, lasting about 2 days. Yet I still didn’t feel quite right. At my persistence, GP did more tests & found I had the gene for Coeliac Disease, however, a biopsy confirmed I didn’t have that, but I had Helicobacter Pylori. Antibiotics cured that. Furthermore, last month I had a positive test for Lactose Malabsorption. That is something that has only come about recently, I never had a problem with dairy products as a child or in my 20’s. Since this is an immune response, could it have something to do with autoimmune disease? – something I’ll have to ask the Endo at my next visit. I’m just wondering if anyone has had normal thyroid test results but also with antibodies that keep increasing & knowing that you don’t feel right, but the doctors just say to wait & see? What should I do next?

[Ski]

#1070390

Hi Mels,

Well, you’ve certainly run the gamut of all the possible doctors to consult! I am so sorry that this hasn’t been easier for you ~ and I am truly horrified by some of the responses you heard.

The one thing I can answer with any authority is that, if you have one autoimmune condition, you are slightly more likely to end up with another, so that may be the connection between the results you’re getting as far as separate autoimmune diseases.

If you’ve been hyperthyroid and now your thyroid is dying off, there’s a theory that the continued, unresolved hyperthyroidism could have left you vulnerable and so these other conditions developed, but that’s not scientifically proven OR provable, so at this point, if treating for these other conditions helps you feel better, then do that.

Antibody levels by themselves don’t indicate "how sick we are." Thyroid hormone levels are the gold standard for that. Still, if you were hyperthyroid before this, then even though your levels may be normal now, you would still be experiencing a host of symptoms related to the hyperthyroidism, because your body has not yet had a chance, at STABLE levels of thyroid hormone, to heal. That can take a very long time, and the longer you remained hyperthyroid without treatment, the longer that healing process can be.

Make sure you are getting copies of all of your thyroid hormone test results, and try to get TSH and T4 tested each time. As you learn more about Graves’ Disease, you’ll be glad to have the frame of reference. You may want to ask for copies of prior test results, if you didn’t get them at first. They can charge you a nominal copying fee, but they have to give you copies if you request them. They belong to you. Context is what’s important, not necessarily the number you’re looking at from yesterday ~ in other words, seeing the pattern of your levels, whether they’ve been rising or falling, at what rate they’ve been rising and falling, is just as important as knowing where they stand today.

If your levels right now are normal, but fluctuating, that can be almost as debilitating as being out of range. The body is programmed to interpret any big shifts in thyroid hormone as an emergency condition, so you can find yourself having symptoms at normal levels, if they’re moving around.

I hope this helps! Please let us know how things are progressing for you!

[Mels]

#1070391

Thanks for your response & encouragement. I’m so glad I found this website ” title=”Very Happy” />
I also enjoy reading other posts.

Ski, it makes perfect sense to obtain past test results & compare, however, when I saw the GP for a referral to the new (3rd) Endo, she only gave me my current results & I queried her about the new Endo wanting past results to compare & she said it wont matter. Lucky I did have some results with me at the appointment because, sure enough, the Endo asked for them! On your recommendation, I will ask for all my results, because it’s important to see the long-term journey of my ups & downs. At my last Endo appointment she said that my levels do fluctuate, but I am not shown the ranges.

Just last week my symptoms came back – lasted 4 days – but went away again. Just another episode I guess. My next appointment with the Endo is in September.

Thanks, and take care.
Mels.

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