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in reply to: Well, here goes! #1173640

Awesome AZGravesGuy! So great to hear you are doing well and the meditation sounds like it is making a profound difference for you. I practice some but inconsistently, you’ve inspired me to get back to it!

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in reply to: Hyperthyroidism/Graves Serious, curable? #1180803

Hi Kalty, it’s definitely serious! Graves’ is also a widely misunderstood and complex disease so the odds that any person you talk to who isn’t a doctor will really know about it is low. And even many doctors aren’t as up on the latest about it as they need to be. This is one disease where you literally need to spend many many hours educating yourself on it to make sure you make informed choices and receive the right care. I’m sorry you are having to put up with know-nothings, just remember it’s up to you to be the expert on it and they can continue with their blissful ignorance. I wish I had the option to not even know what a thyroid is….sigh.

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in reply to: My baby girl #1180175

Wishing you and your daughter well, I hope the peds cardiologist gives you good news. I know when I’m hypo my heart symptoms are worse than with hyper even.

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in reply to: Switched meds and feel awful :( #1180724

I hear ya Heather. When I calculate how much thyroid problems have cost me emotionally, financially, and socially it’s just very depressing to me. All we can do is start from today though. Take a stand – you have every right to tell your doctor you want back on the medication and dosage that worked for you before. With GD we have to put lots of effort in to being our own advocates even when we least feel up to it. I hope things get better for you soon!

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in reply to: Possible Hyperthyroidism – Help? #1180706

Sue, it sounds like you now rule the anxiety so you are the Queen!

Guardia, any option to get a different family doctor who will take your concerns seriously and do the referrals? And btw PPI’s can cause nausea as a side effect. For a home remedy check out apple cider vinegar (standard disclaimer: not a replacement for your doctor’s advice, etc.) it helped me a lot when I had a digestive problems when PPI’s, Pepcid, Tums didn’t help or made it worse.

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in reply to: Possible Hyperthyroidism – Help? #1180701

Once the docs do the antibody tests TSI (thyroid stimulating immunoglobin) or TRab (thyroid receptor antibody) they will be able to definitively say whether you have Graves’ so it’s sure worth doing because your TSH does appear to be behaving suspiciously.

Still are you only eating potatoes and diet gingerale with a few pecans? Even if you don’t have nutritional deficiencies now you will – it’s inevitable. Potatoes just aren’t a complete food and some people believe artificial sweeteners can aggravate Graves. I would ask you to please reconsider what you are doing there…but I promise I won’t keep harping on it after this

As for anxiety you might want to look up Sueandherzoo’s threads because she’s dealt with this issue combined with Graves’ a lot. It is possible to get medication to help while you are sorting the rest out. Good luck to you!

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in reply to: Possible Hyperthyroidism – Help? #1180699

Definitely follow Kimberly’s great advice and you will know for sure whether Graves’ is causing your trouble. It seems to me that there’s more to this picture even if you do have Graves’. A diet of only potatoes and diet gingerale with the occasional pecan would make me feel completely sick if I ate it for only one day. There is no way that you aren’t developing serious nutritional deficiencies eating this way which can then cause symptoms of their own. I know with suspected Celiac it’s probably hard for you to find foods you tolerate well, but there’s a lot of gluten-free products out there in the stores now. Your weight loss and even tremors – which are key Graves’ symptoms – could be attributable to what’s happening nutritionally. I wonder if you could find a doctor (in addition to an endo) who could look at the whole picture, naturopath maybe?

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in reply to: HELP….. DOES THIS NIGHTMARE END #1180673

Mari, I will pray that you find the best doctors and they perform to the best of their abilities for you. You have been through way more than any person ever should. Your situation shows that Graves’ really is a very serious disease and I wish that the medical community as a whole took it more seriously and it wasn’t hard for so many of us to find the right treatment without so much effort. I’ve often read that the strabismus surgery (that’s the one you are having?) is one that is often the most successful with the little recovery time. Please keep posting and let us know how you are doing.

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in reply to: Hello again, and another post-TT update #1180526

amosmcd wrote:

TSH 0.823 (0.34-5.60)
FT3 3.1 (2.2-4.3)
FT4 0.88 (0.57-1.25)

Actually these are still low-ish thyroid numbers – only your TSH sinking looks hyper and that could be due to antibody activity alone. It’s likely the increased atenolol that’s helped with your symptoms. There’s an official document somewhere that says that doctors should determine dosages (of methimazole or replacement) by the FT4 and FT3 not the TSH for Graves’ patients. Being hypo, even slightly can cause sleep problems and palpitations, it does for me. I don’t start feeling even slightly decent until my FT4 is above 1.1 . Please consider that the reduction of your levo may be the exact wrong thing to have happened and look into a second opinion if you are still feeling bad. Most people with no thyroid at all, full TT, are on higher doses than 50mcg. I’m sorry all this is so rough for you and hope you and your doctors can work out a dosing scheme that works for you soon.

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in reply to: Hello again, and another post-TT update #1180514

Hi Amy, sorry to hear things are still so tough, HUGS to you! I’ve found that I can have more heart symptoms while being slightly hypo as well as hyper. So your high TSH might very well be telling you that you need more levo not less. My endo says she doesn’t like to see a TSH above 2.0 for her patients. Have you considered consulting another endo for a second opinion? I’m glad your iron got authorized I hope it helps – many (who aren’t quacks) believe low ferritin still can affect a person’s energy but my money is on the thyroid for the dramatic symptoms. I feel for you – I’ve had so many nights of frustration wondering if I’ll ever find real wellness again while the docs think my tests look okay. We just have to keep at it and not settle for less.

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in reply to: Prednisone again? #1180594

I say call up the surgeon’s office and insist on getting an explanation. A doctor should make the time to explain when a patient has questions about taking a serious drug. It may be the right thing to take but I’d be cautious too in your position!

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in reply to: Safe to take Beta Blocker & Tranq after TT? #1180581

Hi Sue, sorry you are having anxiety and fast heart rate today…my guess is the bb is okay, might help the anxiety too. My doctor once told it blocks the effect of adrenaline and anxiety is probably amping that up. I’ve actually used beta blockers in the past as a tranquilizer, works pretty well. I keep meaning to post to thank you for your TT thread, you are helping so many who may follow in your footsteps soon enough!

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in reply to: TSH vs FT3 and FT4 #1180477

Hi Carol, wow you have been in this fight a long time! That’s a shame about the Armour issues – I’ve read that it has a somewhat higher ratio of T3 to T4 than is comfortable for many but works great for some. I hope your new endo works out for you. I found another link, similar to the ones before but it might be useful – the commentary section at the end provides a nice summary of the issues. Still at the end of the day your FT4 is high up in the range so it’s not crazy for the TSH to be lower….seems the FT3 conversion issue is the key.

Long-term TSH suppression in Graves’

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in reply to: TSH vs FT3 and FT4 #1180473

Jeeesh I almost lost the forest for the trees. The point of all this stuff about the Graves’ antibodies suppressing TSH is that it makes determining dosages of methimazole or replacement for a Graves’ patient by TSH alone a bad deal. The TSH is untrustworthy because of this extra factor potentially monkeying with it. Now if your antibodies are low the TSH begins to become more useful. There’s some official document not sure where that actually says endo’s should not use TSH for decisions for Graves patients but FT4/FT3 instead.

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in reply to: TSH vs FT3 and FT4 #1180472

Hi Carol, I’m glad the articles will be helpful! I’ll do my best to answer your questions, but I may stray slightly close to this board’s rules in doing so. I guess Kimberly will let me know if I go over the line. We aren’t doctors here and aren’t supposed to give medical advice. So take the following in the spirit of me sharing what I’ve learned…

Most studies about Graves’ antibodies are done on people who are in the first active phase who still have their thyroids and haven’t had RAI or a thyroidectomy yet. Still Graves’ is for life, and it is possible to continue to have antibody activity at any time for the rest of your life and for it to cause problems. We have a member here Shirley who had onset of TED fifty years after her thyroidectomy. So even though you aren’t on methimazole the studies about the Graves’ antibodies that show that they suppress TSH still apply. That second link about the rats is inarguable to me. They injected rats with antibodies from people with Graves’ and people without Graves’. The first set of rats developed reduced TSH, so there ya go.

About the TED and TSH antibodies (or TRab) – you can search on this board and Google and easily find information about how high TRab or TSI (which is another measure of Graves’ antibody activity) is linked to increased TED problems. Your TRab value indicates significant antibody activity which would stand to reason given the new TED you are dealing with. The million dollar question is why did your antibodies get stirred up again in the first place….nobody knows for sure. One avenue I research for my own understanding is looking to see what causes flares of any autoimmune disease – after all GD is just another autoimmune disease in the end.

About your FT3 it is low while your FT4 is relatively high – you might find value in researching “FT4 to FT3 conversion” problems and discussing with your doctor supplementing with Cytomel (synthetic T3) or looking into natural thyroid hormone like Armour which naturally contains T3 with T4.

Good luck with the new endo – I hear you about how hard it is. It’s sobering to have a disease where you have to do so much self-education and advocation.

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