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in reply to: Husband’s definition of support… #1174904
Khadijah I’m sorry you are going through this while dealing with marriage difficulty too. It doesn’t matter if someone else somewhere on the planet has GD and is unfazed by it. What it’s doing to you is what matters, how you are experiencing it is what matters – there is individual variation. Is there any way you can get some extra support while going through this? Any counseling maybe?
in reply to: Normal T3/T4, Low TSH? #1174923Hi Gatorgirly, sorry to hear you are getting jerked up and down and around by the TSH. I am imagining a collection of prescription bottles full of different dosages of hormone collecting in your bathroom cabinet! My understanding as a non-doc so far is that in Graves’ patients the TSH alone cannot be what determines the dose of antithyroid meds before intervention or replacement hormone after because the auto-antibodies trick the pituitary directly (even after RAI or surgery when thyroid is no longer an issue) into giving out wrong amounts of TSH. So if you still have any eye symptoms then you certainly have antibodies that are still active in the system and those can derail your TSH even if your actual thyroid hormone in the blood is okay.
Here’s a link to a study about this to show you guys I’ve not gone mad:
“The explanation for this continued suppression of TSH is unknown, but it is usually attributed to a delayed recovery of the pituitary-thyroid axis (6). We offer an alternative explanation, involving a direct effect of TRAb on TSH secretion by the pituitary. We have recently postulated that in addition to a negative feedback control by T4 levels, TSH secretion is influenced through a negative ultra-short-loop feedback mechanism within the pituitary. “
in reply to: Labs are a no-no here but… #1174860Naisley your plan sounds awesome
How did you find this amazing doctor?in reply to: Stop Atenolol at once? #1174879Alyianna, I hope you are feeling okay. If you are worried you could go to a drugstore and take your blood pressure & pulse or even at one of those urgent care clinics just to be sure it isn’t rebounding up. I’m not sure why your doctor is okay with stopping all at once but you can keep safe by monitoring things.
in reply to: New lab results #1174837Hi Amy, I know that cold feeling as my levels have gotten too low lately. Given that your FT4 is below the bottom of the range and your FT3 is barely in the range you are probably suffering from hypothyroid symptoms rather than direct side effects of methimazole. TSH remaining low can be due to Graves antibodies and can lead to getting overdosed on methimazole. There is a link that Kimberly posts sometimes to an official statement about this and how endos should dose by the FT’s and not TSH. I need to find it myself to bring to my own endo soon.
Edited to add: Here’s a link from Thyroid Disease Manager http://www.thyroidmanager.org/2007/02/01/long-term-tsh-suppression-in-graves-hyperthyroidism/
in reply to: Severe memory issues #1174392Teri_Odegaard wrote:I understand where you are coming from. I recently graduated from college. It wasn’t the easiest thing I ever did since I was diagnosed with GD. To this day I still have problems with my memory (doesn’t matter any tricks or notes don’t help), thinking processes, and concentrating. The specialist I have seen say there is “nothing” wrong with me. My provider says there is, but he can only go so far. I’m so tired of the “lack” of answers it stinks. I have found out more online than all the specialists I have seen. Even when I take the printed version to them they have no idea what I am talking about.Just how do you go about convincing a “specialist” you have these symptoms when even “they” can’t find anything?
My doctors have been willing to admit the problems are real, but there’s nothing they can really do other than try to get they thyroid hormones in the best spot. Good on you for getting through college with GD, that’s a huge accomplishment!
in reply to: Stop Atenolol at once? #1174876What dose of atenolol are you on? Google beta-blocker withdrawal and rebound to see what happens when people stop cold turkey. If it were me I’d wean off the medication. You could also ask another doc for opinions on this too. I’m in a similar boat you are that I supposedly hit the thyroid hormone sweet spot and missed it and am now too low. I do remember two days of feeling really good a couple months ago, lol, that must have been it. Hang in there, all we can do is keep at it.
in reply to: Labs are a no-no here but… #1174857Naisly wrote:For example its very hard for me to bring in US guidelines (I’ve tried) stating not to dose according to TSH levels, rather dose on free T’s.So if anyone has Canadian literature they would like to share, please do.
How about this study from Amsterdam? Suppression of Serum TSH
Ooops, just looked at your 10/25 labs – it doesn’t look like you have suppressed TSH anymore, hopefully they won’t argue with you now on reducing dosages. I’ll leave the study up in case it’s useful though. Good luck!
in reply to: Crazy Journey #1173173Hi Krcole, I’ll be rooting for you too! Individual beta-blockers do vary in how intensely they can cause the shortness of breath symptom. I had it a while back after taking atenolol for a year, but later was able to take metoprolol without a problem. All of the drugs have different half-lives too with propranolol being the shortest, so to get more even effects on your heart rate a switch to one of the other blockers might help you too. Good luck on your surgery!
in reply to: Crazy Journey #1173166Hi krcole, you are on quite a rollercoaster ride! I hear you about the dramatic music….it is such a serious moment when you are told you have Graves, even the name of it sounds awful. It sounds like you’ve got lots of doctors taking your condition seriously though so that’s good. How big is this mass in your neck? Have they considered doing an FNA (fine needle aspiration) biopsy first before just jumping right ahead to thyroidectomy? Benign thyroid nodules are not uncommon with Graves.
in reply to: Alcohol and Tapazole #1173104Weighing in late Alyk but I’m glad for your liver that you aren’t going. My endo told me that in her experience most people have a liver reaction if they are going to in the first three months on an anti-thyroid drug. So if you are still on it in a year and haven’t had any trouble maybe you can relax some.
in reply to: Hyperthyroid and chest pains #1173082Hi Alyk, since you were on Tapazole before and if this is the same pharmacy you are expecting the prescription to be sent to you can ask the pharmacy for an emergency advance. I had a similar situation and Walgreen’s gave me three pills to tide me over till they got the fax. I don’t think they would have done this if they hadn’t already held my prescription for that drug in the recent past but it sounds like you are in the same situation. Ask to speak to the pharmacist directly and give it a go, good luck!
in reply to: Old Man at a Party… #1173088What a bummer, that old man at the party should just stop that! They say avoid politics, sex and religion and oh yeah…medically terrifying people. I hope you feel better soon Alexis. I’m not feeling good either and waiting for labs that are still too far away and just inching a long pretty much. If it were me I’d go for the synthetic T4 and T3 because I’ve read of a couple of people’s doctors saying the Armour contains antigens from the pig’s thyroid that encourage the autoantibodies to rev up. OTOH I’ve also read many posts of people saying Armour has been wonderful for them, so go figure, eh?
in reply to: Accepting Graves #1172970Tomas, I really feel for your situation – I think maybe five times I’ve read now about relationships breaking up when the Graves hits. At this point you can’t really know whether there were problems that would inevitably lead to breakup even if gf hadn’t become ill or not. I agree with Gatorgirl that you need to respect her decision and give her some space. In a few months, maybe six or so, she should be more stabilized with her hormones and you could see if she still feels the same way about things.
Hi Kim, I’m guessing you were referring to my post mentioning the other immunosuppressive drugs? I know this board is not supportive of mentioning alternative therapies so I try not to, but those drugs are supported by medical research mentioned in the book. So they are therapies one’s doctor would have to administer and would find in credible journals. Should I simply refer people to the book or if I mention lesser known therapies must I post a study next to it each time? (Tone is hard to convey on the internet, I’m not being snarky but seriously asking)
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