I Hope I Can Still Post Here; I'm Opting For Rai (Maybe Ptu) - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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I Hope I Can Still Post Here; I'm Opting For Rai (Maybe Ptu)

superbug antibiotics RAI PTU

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#1 StCeciliasGirl

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Posted 04 January 2014 - 05:31 PM

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I've read Thyroid 101 - RAI over and over.  I'm still reading it. But I've been really, really sick for months now. It's not Graves' fault, and I know that RAI won't heal my Graves (the reason I hope I can still post here as a support group), but things have been confusing for the diagonsticians as there's been overlap in symptoms between Graves (which has been, relatively, untreated for about 2 months), an unexplained non-healing of a bad tooth, which led to way too many antibiotics, which led to a superbug, my real problem. And I'm still sick.

 

I might yet change my mind since the increased MMI to "heal" my thyroid enough to be considered for RAI is giving me "weepy" feelings (I'm not weepy usually), and[color=#ff0000;] I might yet jump on the PTU boat since someone swears they took PTU and inderal (propanalol, like me) and was HEALED in 11 months, no big deal whatsoever.[/color] But I'm 5 months in (I won't count the last month since I've been throwing up so bad), but the simulatenous symptoms which have worried the docs have included:

• hyper heart rate (128 at best, with more propanolol dropping hr too low suddenly!)

• extraordinary CHILLS (at first, heat/chills; now just chills); just, I've learned to LIVE with the chills

zero hunger (I'm force-feeding, and it's not even healthy: I can't have meat, fruit, salad, etc; only "low residue" food like crackers)

• little-to-no sleep (after up to 20 mg/day of Ambien in November, which didn't help, and all of which I'm off now, by the way); the vancomycin (super-antibiotic?) helped me get some sleep, but I just finished that, and am back to zero sleep.

• muscle atrophy causing weirdo pains, including a weird numb/tingly toe (???)
• weight loss again

• worsening vision again (which docs don't care about).

 

These could be Graves-related or not, which concerns consulting docs, so they're trying differential diagnosis (superbug complicated by unlying illness they can't find, which my GP is assuming is autoimmune). They said "RAI", and I balked many times, but 5 ER trips ...man, that would have paid for the RAI and post-treatment and I'd have bank left over. And for all the "bad" associated with RAI, if you can't keep your MMI down due to extended illness, hospitals simply don't stock it in IV form, and endos are treated like crap by medical industry.

 

Finally, I guess my prognosis is "uphill climb" regardless. Thyroid labs came back and they were worse than when I started MMI therapy. You don't want to know, but I may write them down one day. Too depressing. Docs recently reasoned that if I'd come in healthier from the start, trying to reach remission with Graves would be reasonable, but "see how one bad illness can throw you off?", and it supposedly doesn't do that to people on Levo.

 

Now, no, I don't want the cancer risk; the kidney problem's risk spoken of in other threads, etc. But my throat has swollen again, even with increased MMI now, and it simply hurts. 1/6 of this year, I've been unable to treat Graves; 1/2 the year, I've been trying to treat Graves (definite ups and downs), but they think trying to reach remission has been "life-threatening". Personally, I've got to put the MMI in the "might have worked" category. At least PTU is just once a day. I see my endo on 14 January, and she and I will look over labs and see where she wants to go. (And if the superbug isn't gone, she might be scared to see me even then.)

I've lurked on here while sick, and I'm happy things have worked for so many, and I definitely read Elaine's advice (and the Thyroid 101's advice). But I've got the doctor's I've got, and one's even read some of the Thyroid 101 thing when I turned  on the waterworks, but he still said treating a Graves case with hypo symptoms is easier because it's what docs he consults with deal wtih all the time.

 

Maybe endo will say "Eh, let's try the PTU," but even with increased MMI, I'm not gaining weight, but losing. I know it's MOSTLY the superbug, but I'm too old for this. Also, I was never as "natural" as many people here were when you started treating. (I'm now on klonipin, but overall, I'm a 7 year benzo "addict"/user; I smoke; my heart seems healthy from the tests and I ate okay (no fast food, etc), but my digestive tract is very sick now. They're still talking about taking parts of my colon regardless :( Even before the Graves diagnosis, I had ulcers and "anxiety", dropped all my weight 2 yrs before Graves dx. I could have stopped smoking, but didn't (anxiety; smoking seems to help, though it doesn't).

 

Anyway, just a heads' up. I appreciate the support afforded to me so far, and hope I can still hang here if I go PTU or RAI. But either way, I appreciate the support thus far. :wub:




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#2 mmztcass

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Posted 04 January 2014 - 06:03 PM

Hey there:

 

I have followed your threads and all I see is that you have been doing is various dose adjusting with all of your meds.  You either stop on your own, or go and take some one else's, as well as taking different meds and antibiotics, etc.  

 

This is not going to help you to be consistent with slow and steady with meds including the fact I had told you previously that many antibiotics revs up the thyroid.  I know this for a fact because it happened to me and I had to research this online to get the info.  My Rheumatologist assured me at the time I would be just fine.  She really didn't know and the pharmacist didn't either.  

 

I am also seeing that the Ambien you are taking (or were) has so many side effects to your problems that it could very easily affect you in the ways you were describing your symptoms and blaming it on your thyroid meds for causing your problems instead.  

 

Good luck and please try to understand that any treatment you decide on, you must be consistent as possible with whatever you do with your meds for it.  It means do not stop taking it for awhile and then starting it up, etc.  I am not seeing it happening for you.

 

Why not try with your doctor's help start from zero and take only the meds you really need?  

 

{{{gentle hugs}}}   :wub: 



#3 mmztcass

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Posted 04 January 2014 - 10:22 PM

P.S.  Please ask Elaine for additional help because I don't know what else to suggest for you.  I do worry about you and hope that something will work out just right for you and that you can easily take anything that comes your way.

 

I would also wonder about all the chemicals and toxins that being exposed to that can cause great problems for you.

 

Maybe getting a TT would be a better choice?  Check with Elaine and see.

 

I had to recently stop taking Ibuprofen and then Aleve for the RA in the last few months because my aches and pains were much worst.  I found that once I stopped taking them and after awhile I didn't hurt anymore because I didn't have all that chemicals and toxins from those bothering me.  I also began adding more and more raw and organic foods that fought inflammation and found myself doing much better afterwards.

 

Prior to that I was on 'heavy' RA drugs which I couldn't tolerate after a couple of years because of the built up toxicity of the chemicals and toxins in my body which made me so ill.  

 

Granted my story is not exactly like yours or anyone else's, but I could have easily gone over on the 'other' side with all that pill popping and likely be in much more of a bad shape that I am now.  

 

So, am I on the 'right' track now or not?  I'd like to think so because my inflammation levels are much lower than these were when I was on the meds.  

 

{{{hugs}}}  



#4 mmztcass

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Posted 04 January 2014 - 11:58 PM

P.P.S.  Have you ever tried the probiotic pills or can you stomach organic yogurt to help to heal your stomach issues?  That's what I would do for myself to get my stomach and digestive problems back on track....  



#5 Michael

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Posted 05 January 2014 - 02:32 AM

StCeciliasGirl I totally agree with mmztcass. From your various posts your taking of medication is not really consistent and for things to stabilize between blood tests things must be consistent.

 

With regards to RAI I want to say think about this very carefully. I've had RAI and am now permanently on total hormone replacement for the rest of my days. It is not a fun way to live, making sure you take your hormone at least 1 hour before eating each morning. I have terrible difficulty getting up let alone getting up for my hormone and then getting up again for breakfast. This may sound trivial but trust me it isn't. RAI can, and does, totally knock out your thyroid making you totally dependent on taking medication on a consistent basis. If you don't the next day will be so much harder because you have "forgotten" to take your medication. Trust me I know, been there done that and I never want to feel that bad ever again.

 

The weepy feeling will only get worse when you're hypo because the RAI has done to a good a job. I was weepy as you put it for 18 months after having RAI so much so I was unemployable. The aches, pains etc, will only get worse for the same reason. The chill feeling is terrible and constant, we have had an average of 40+ degrees C (105+F) on the Australian mainland and I'm still chilled. It feels as though someone has filled my bones with ice cubes. My mother and sister are feeling the heat (mum's normal my sister has flushes due to her age) so the A/C is on and my body is just a big icy pole (chocolate :lol: ) and the aches are woefull and no amount of panadol helps. If you suffer migraines they may get worse, mine did and now I'm on medication for them to.

 

I'm not trying to scare you. The point I am trying to make ,possibly badly, is you are much better off knuckling down now with taking your medications to try to get to remission or at the very least to minimise the Graves symptoms than you are of going RAI without even trying alternatives and finding the side effects of a possibly non reversible medication are worse than what you are going through now. Please reconsider things and try your best to get into a consistent pattern with your medications before you try anything else.



#6 Hart

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Posted 05 January 2014 - 06:21 PM

Been missing you St C

Going to throw my thoughts to you. What else can I do?Please don't take anything I say as being blameful to you. It is not. I do believe that you can help yourself to the best that you can.  I really do understand when those Doc's say one bad illness can be devastating. I was bummed when I got frozen shoulder (huh!), shocked when the osteoporosis label jumped on and Graves was hyperspace for a while. But I am back. Okay. Good, even.  Still working on the underlying issues cos I simply know I have to.

 

First, no matterwhat choice you make, of course you are welcome here, you are one of us. Lifelong deal isn't it? I want to know how you are. We are all potentially at risk of lots of stuff. we will all go different ways on our path with this and I respect your right to choose.

 

With regards to your graves treatment, my not so humble advice is to post those labs. Face them. Monitor them regularly. There is no way allowing any Doc to drive you hypo will help.Likewise hyper has to be dealt to.With all this medical stuff going down, as above, definitely encourage you to post to Elaine also. 

 

Here in NZ there is a medically trained Doc who does alternative health.$1500.00 worth of blood testing for a starter to look for problems, imbalances. Just a different comprehensive approach. I've heard him referred to as the miracle man. I wonder if theres anyone where you are?Look at what the mainstream health system has done to you and for you. It has a significant place but it sure ain't all that! 

 

What are the health activities you are or can do St C. Mind and body. I'm sure you are onto what's required in this low residue diet but when I look it up on the net, say meat, for example is okay. For me, I've come to the conclusion that diet and a healthier weight than the suped up skinny that I like to be, are vital. Could hypnosis, for example, help you with anxiety, vomiting, whatever. 

Hey I've even looked at a health spa in Aussie. Organic food, time out, review way of thinking. They sell a book or package - something along the lines of How to beat the blues and that's in my basket of options. I think it's important to develop that basket of hope, choices and support.

Best to you

D



#7 Simon

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Posted 05 January 2014 - 06:31 PM

Post the numbers. We had this when you came in, otherwise we are guessing, and can't help.

Serious infections can do really weird stuff to thyroid hormones. The body has some strange and poorly understood mechanisms that down regulate cellular activity by manipulating the thyroid chemistry.

 

When you say you start to feel weepy, I immediately wonder if thyroid hormones are low.

 

Are you still on Vancomycin, as it has a LONG list of side effects, which is why the bugs aren't generally resistant to it (because we prefer not to use it unless than is no choice).

My pathologist friend is a cynic of the term super-bug, especially for C-Diff. Horrid as it is, he thinks the term isn't especially helpful. There are a selection of newer antibiotics which can be used, I'm guessing pricing and side effects mean that vancomycin is preferred here?

 

And of course if you opt for RAI people here will support you afterwards, but the depressing fact is people who do badly before RAI tend to do badly afterwards (and the same for surgery and ATD). Unless there is still a concern that ATD might be affecting white blood cells, there is little advantage to be had with RAI. Your fT4 was coming down on 30mg, and so presumably there is scope for block and replace style treatment if needed.

 

I sympathise with stomach issues, but if you have issues absorbing ATD, you'll likely have issues with absorbing levothyroxine, RAI doesn't let you simply escape such issues.



#8 fireball

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Posted 05 January 2014 - 11:25 PM

 I think most of the symptoms listed are of Xanax withdrawal. Going from Xanax which has  a short half life ( and so addictive it is not used in Canada) to Clonazapam (Klonipin)which has a longer half life is the first step to detox off benzos.  Withdrawal can take 6 months. Can cause rebounding heart rate, sweats, loss of appetite, inability to process food, severe weight loss, body aches, mood swings, loss of energy and severe insomnia for months. Withdrawal is difficult.

 

Added to this is the Graves, which in light of the benzo addiction, is difficult to treat.  The formaldehyde in  cigarettes is a known cause of Graves disease. What ever treatment you plan, you must stop ingesting formaldehyde. My neighbour smokes pure, unprocessed tobacco leaves. She buys them at a herb/health food  store and rolls her own. This would be a good option for you. This would help your eyes.

 

I don't believe there is a magic bullet. PTU is to be taken 3x a day not once.

 

All of us who have Graves have to change our lifestyle if we want to attain and stay in remission. I just wish it was easier.



#9 Pam_L

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Posted 07 January 2014 - 09:16 PM

Agree with everyone.

 

I'm confused though. Do you have the December lab results yet ?

That would help. We MUST get lab results to be able to understand what is going on, and what to do next. No way around that. Please be sure to do that and also get the new lab results when you go for your January labs.

 

If splitting the MMI is too difficult, change to once a day. That is better than missing doses.

No, PTU would not be a good choice for a patient that has compliance problems. It MUST be in divided dose.

 

If you opt for RAI, be aware it does not remove Graves' disease, it only hopefully removes the hyper portion. You are then dependent for life on taking replacement hormone very precisely. So one way or the other, you need to work on getting the medication right, no matter what you do.

 

Yes, a bum tooth can throw a huge monkey wrench in a persons life. I'm so glad that at least it's out and you are started on the healing path. In the future you might decided your doctor is better at prescribing antibiotics for a bad tooth, rather than the dentist. I had a horror story myself, and found a doctor did a much better job here.

 

So you've ended up with hep C from the antibiotics. There was a newspaper article here recently with a study showing the benefit of probotics in the form of yogurt with live bacteria... a Google search would probably show that. Pick a cultured yogurt like my favorite Nancy's yogurt, avoiding any with artificial sweeteners or seaweed thickeners. If it says "cultured' just check to avoid the aspartame and your good to go.

 

You do not need a perfect, pristine diet to succeed with Graves'. We each do the best we can. I can not afford much of what I read some here do in that effort, but I do skip high iodine foods and packaged / boxed foods as much as possible. It's easy enough to cook simple things myself from basic ingredients.

 

When I get in from work I sit and check all my paper work and such, then take a break. Soon the idea of kitchen time sounds like a good idea. I enjoy being able to just fuss around cooking, tidying, do a few dishes, put some away, check what's cooking.... it's a nice relaxing part of the day. But certainly not perfect or organically pristine. I tend to turn on NPR and listen to some interesting story or news article during all this. Wanting to hear the end of the story sometimes results in cleaning part of the frig ! :lol:

 

Not knowing much about Hep C I did a search for you.

Look : http://hepcsupport.o...nd-hepatitis-c/

You know, that looks pretty much like a good autoimmune/ Graves' diet. Not too fancy or expensive. The main difference is they stress low sodium, where we stress low iodine. Close huh ? If your already avoiding seafood, you already mostly have that in the bag. You would need to skip the potato chips though for the Hep C.

 

But, yes.. with an uncontrolled infection and non-compliance with your MMI, you do put yourself at risk of a thyroid storm. So it seems like a matter of can you turn over a new leaf, or is RAI the only choice ?

( understanding the one risk of RAI is a thyroid storm). After RAI you still have Graves', in fact the antibodies rise. You will still need to be compliant with meds and you will still need to work on diet.

 

So it seems it's time for a long sit down talk with yourself... not us, with yourself. There is no "cure" that makes this go away.

 

:wub:



#10 StCeciliasGirl

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Posted 14 January 2014 - 02:18 PM

Sorry: it was c-diff, not hep c. Apparently I got really sick on the insides from c-diff, according to a stool sample. They were talking about horrible things, best I can remember. The Vanco ended up helping, I guess (though apparently it's a long recovery). Hospital cared about IVing me antibiotics, hydration, and what they called "life-saving" stuff, and thyroid simply wasn't part of their plan.

 

My meds now are just the MMI, the propanolol, and the Klonipin. I take probiotics when I have Gas-X (but my husband would rather me take only the first three — the fewer drugs, the better, is his motto). I can eat only low residue diet for a while, but I do eat the yogurt to try to recolonize (?) my body's bacteria.

 

As I was having to prep for today's endo appointment to discuss a change to PTU or RAI, regular doc increased my MMI so I could have RAI asap. But as I've taken MMI on schedule, I do feel better. I'm still dizzy and a bit weak, and nervous (Klonipin isn't as strong as Xanax, I guess), but I was going to see if my labs have improved since December's. (The December labs, part of the embarrassment is they got totals instead of frees, but those numbers were huge and doc acted like he was having a coronary. He said they were worse than before diagnosis.)

 

I think I'm going to see what endo has to say today. Her primary test even above labs (which she says she throws out if you've been on antibiotics) is making me stick my hand out and seeing if there's shaking. Surprisingly, there's no shaking. Stiff as a board. But I need to talk to her seriously about when I'm sick, how my docs (GP and dentist, and whoever GP consults) blame the Graves and say they wish I'd have RAI and levo, because that's what they know how to deal with. And I simply can't trust her to be around to advocate for me (her phone has no answering service; she's "cut off" from her primary office, which I don't understand.)

 

[color=#b22222;]Thanks fireball for the note about organic cigarettes; I didn't know they existed![/color] I know smoking is a huge problem though (esp with my eyes). I've tried e-cigs, many kinds, but the best ones always make me feel more hyper (hyper as in "active", not as in Graves-hyper). I know they're supposed to be healthier, but they just make me feel super jittery.

 

 

[color=#b22222;]Thanks [/color]for all the responses, in fact. I'm really not trying to play with my health, but I know me well: I am stubborn. I don't mean to be, but I am.

 

I'll see what endo says today and post back. One thing endo and I have to get clear is what to do if I start throwing up (that was from the clindamycin; I was still on Xanax back then, so no withdrawals). Doc had me on the suppository but it's like my digestive system shut down; I had a hard time swallowing even if the phenergan helped nausea, so I was on sublinguals or IV. Maybe endo will some ideas (like an emergency number, reference for Graves-friendly doc... I don't know.)



#11 Pam_L

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Posted 14 January 2014 - 11:00 PM

You sound better. :wub:

 

Keep those meds nice and steady.

And remember to have them give you copies of your new lab results okay ?

 

American Spirit is the brand of cigarettes the health nuts around here smoke.I see them in all the shops.

It's a hard addiction to break free from, so it makes sense to me they do the best they can.



#12 StCeciliasGirl

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Posted 11 February 2014 - 12:18 PM

I did: I kept my meds nice and steady.

 

And they were scheduling my RAI, but kept running into problems (snow), but then a few weeks ago, I knew I was hypo. (Frozen like block of ice; eating sandwiches at night when my colon is still healing like I hadn't eaten in years; muscle pain). I stopped taking propanolol entirely as my heart rate was fine, and as my GP said to do (he said take however much propanolol required to keep my heart rate at 80; it's at 80 almost regularly all by itself, or even lower). The Klonipins were a HUGE problem all on their own (they build up in your system, unlike xanax, and make you a zombie!).

 

The docs were all busy, my words slurring, and people were thinking I was drunk because of my gait... so I called pharmacist, and he originally thought I was having stroke (I wasn't) and wanted me at the ER, but we're STILL paying hospital bills, and he kept me on the phone to make sure I was okay (I like that guy :) ). Finally, he advised me to cut my Klonipin dose down to hardly nothing (I have panic attacks and feel like a zombie; it's "great"), and cut my MMI down to 5mg/day (half of a half, 2x/day).

 

And in no time, like almost overnight, it made me better. Not perfect, as I was still ice cold, but I could drive again, walk, talk with slurring, etc.

 

The endo was mad on Friday when I showed up for labs and pre-RAI appointment, but I'd tried to emergency-call her for weeks, and my GP, and they were busy again. Had the phone records to prove it. But by then, though, I'd been stable on 5mg/day for weeks, and my endo's exams (surprisingly) showed no "hyper" symptoms (steady hands, less-responsive reflexes). So she sighed and said, "[color=#800080;]let's do labs and see where you are; stay with 5mg/day, but if you're really bad, we'll put off RAI a month and put you on 30mg MMI.[/color]" :blink:

 

Now their tests change EVERY TIME you get blood drawn, like T3, TSI sometimes, TSH, FT4, etc, but this morning, by their own standards, ALL my lab work was literally normal. Everything was normal. On the tiniest dose of MMI (2.5mg divided!) I'd had some hope that over time, I'd respond fast and well to the MMI, as I'd supposedly responded so well to MMI therapy in August-October, before I got sick and couldn't digest (turned out to be c-diff, but I'd like an endoscopy soon to see what's going on there).

 

So I told endo office this morning, I want to go on block and replace. Mainly because I'm so freakin ICE COLD all the time. She wanted an appointment  but I got up the nerve and called back and insisted, "WILL you do block and replace?" and she said "it's an [color=#800080;]old therapy nobody does anymore; I still recommend RAI."[/color] :angry:

 

So... today — I still have a few things going on, like that Klonipin needs to go, and I have a nutritionist helping me with the stomach/colon pain — I'm going to beg my (OLD!!!) doctor to do block and replace for me, or find me an endo who WILL. Maybe it's smarter to just cut the MMI to 2.5/day, but these are already tiny little pieces I'm taking... you'd have to see it half of a half of 5mg... I don't see it happening.

 

Plus, I think I need that levothyroxine, just a tad even, because I'm still freezing all the time. So much so that I'm getting scared to take ANY methimazole, which I know is wrong, but the freezing thing, I just can't take. Plus I have enough body pains, that I'd attributed to c-diff recovery, and now suspect are hypO, that the temptation to try 2.5 mg/day (this time it would be without even pharmacist advice) is too much. (Remember: I'm stubborn.)

 

I think I know enough to realize that THESE hypO symptoms were from the old 10mg/day dosage, so I'm actually glad I cut the MMI to 5mg/day. In a month, I'll know if that was too much of a cut. Am I right? Or am I going full hypO, and need the block and replace (as I strongly STRONGLY suspect, though I can't tell you why. It's ...the freezing thing.)

I've started calling other endos again, but they're all "we only do diabetes here," or part of the large group that my current endo is part of (who have the nuclear radiation facilities). Or out-of-network. It's frustrating, because mainly, I think all I need is some levo and a scheduling dose (what do I take and when?).

 

I'll try to update my labs later today after I see them. Depends mostly on the Klonipin — it REALLY makes me like a zombie; but I need something for, I guess, regular panic attack symptoms. If Klonipin is what doc wants me on, I'll be asleep ..for a week, probably (facepalm). But I'll be back as soon as possible. (Expecting more snow too, btw. LOTS. FEET. I'm so sick of snow.)



#13 StCeciliasGirl

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Posted 28 February 2014 - 02:59 PM

I updated sig and put in my terrible December numbers. (Not the T4 totals and other useless lab numbers that convinced docs I needed RAI or I'd die). I don't have copies; docs and I are definitely "on the outs". I'm off the Klonipins and back on Xanax (I have several old refills I can use until I find a new doctor), and back on Magnesium too, which helps a lot. My nice pharmacist helped me find a different brand of 3mg Melatonin without color additives, and they're helping with sleep, as well. But back in Jan and early Feb, I guess the Klonipins built up in my system and I just couldn't hardly talk or walk right, but doc kept wanting me to "get used to them," and said they'd get in my system and would be better for me. He was majorly WRONG — I counted 50 days of trying them, talked to pharmacist, and he said to find new doc and get back on my Xanax until I do.

 

My GP, endo, and I are definitely on the outs, let me warn you. There will be no more tests and stuff from them. The latest tests I had (husband had to drive me because I was so Klonipined-up I could hardly walk), they were great. Maybe too great: every single test was supposedly "within normal ranges". :unsure: My endo said to quit all MMI and propanolol (I think I can guess why: to make me hyper so I "qualify" for RAI again), but I've opted to stay on the steady dose of MMI I've been on a few months (5mg/day divided), which is what I suspect helped my labs.

 

[color=#b22222;]Best news of all[/color] (for me personally) is that the insurance company refuses to pay for even iodine uptake, much less RAI — they said I'm clinically "normal" and responded well to MMI. :D  (I know, that doesn't mean "remission", and I'm still on my 5mg/day MMI and just using a heating pad for hypO symptoms like freezing and muscle pains.) I called insurance, and lady said my December results NEVER should have been taken into consideration because I was steadily improving on MMI before antibiotics and c-diff, and my latest blood results are actually within expectations. :D

 

The docs (both GP and endo) and their receptionists are NOT working well with me anymore. They'll see me, but only to push for RAI, to the point that my GP says I'm "suicidal" for not wanting RAI even if I have to pay out-of-pocket. I mean, it's bad. I've been calling around for new GP (forget endo), but am having a hard time finding a GP locally. The call goes well until they hear who my current GP is, then it's "oh I'm sorry we're really booked up," or "we're not really taking new patients" (after they'd talked to me about pre-existings and my insurance). A few were "out of network", which is a new problem for me. (I'd thought Blue Cross was accepted everywhere; I just don't get this network stuff.). But like with Xanax prescriptions, I have enough MMIs refills to last a few months (until I can find a new GP, or talk sense into the monster).

 

(A friend suggested I LIE about who my GP is, then "drop the bomb" when I was at appointment with new doc :lol: ...it might come to that, too. —I'm desperate!)

 

Anyway: how much magnesium?!

I swear, it took the 50 days of Klonipins even more time to get out of my system, too. (I've been off them a few weeks now.) I think they're stronger than Xanax! But I'm trying to replace Xanax with magnesium. Only thing is, I don't know how much magnesium to take. (Docs took me off all supplements back in Nov/Dec, IIRC, and before that I was taking one at night. Is 2 or 3 okay? I can't read the tiny writing on the bottle, and web sites just try to sell you their brand). Thanks for any info!



#14 mmztcass

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Posted 28 February 2014 - 04:47 PM

Thanks for letting us know how things are going for you.  Please find out how many milligrams each Magnesium pill is please.  Also which kind of Magnesium is it?  There are several types of Magnesium.

 

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#15 StCeciliasGirl

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Posted 28 February 2014 - 05:15 PM

Oh hey Linda!

The bottle just says Magnesium. It's 250mg. —Oh, but here's the web page for it. I guess "magnesium oxide"? (I was mainly looking for one without any added colors or dyes. I didn't know there were different kinds of magnesiums.)



#16 mmztcass

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Posted 28 February 2014 - 05:37 PM

I would look into getting a liquid Magnesium spray bottle as it will contain Magnesium Chloride.  I don't take Magnesium pills anymore because of the poor absorption.   But for you to continue taking the tablets, perhaps two tablets for 500 mg total would be better.

 

{{{hugs}}}



#17 StCeciliasGirl

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Posted 01 March 2014 - 01:07 AM

Will do. You gave me that link (I didn't know it was a spray), and my husband had gone out and bought some for me before I could order. Then I got this bottle of pills because they didn't have the added colorings and tastes. (Docs took me off all my supplements in Nov as we didn't know what was causing new rash, if I recall it right.)

I tried eating more bananas and avocados for natural magnesium, but I think husband figured out I'd have to eat a WHOLE LOT to get extra magnesium.

 

I think I'll take the 2 for now, and go for the spray. Thanks again. (See, I do bookmark and listen to advice. Life just gets in the way sometimes. Life, husbands... doctors. :lol: )

 



#18 canderson

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Posted 01 March 2014 - 08:20 AM

 So glad to hear how well you're doing! :wub:



#19 StCeciliasGirl

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Posted 04 March 2014 - 03:23 PM

Thanks canderson! It's really the forum that helped with the continued strong suggestions to take divided MMI, same amount and same time. My endo to this day suggests various doses, various times, even within weeks of labs. (eg, take larger evening dose "whenever you go to bed" instead of at same time). Actually, she most recently told me to quit MMI entirely (over phone, angry, yesterday). Both GP and endo are still PUSHING HARD for RAI. I've never in my life seen docs pressure someone so hard to do any procedure, even when my dad opted to live with a odd-shaped tumor in his kidney that suggested cancer (and he's STILL alive 4 yrs after they said he wouldn't be, and he is doing very well, though the tumor itself is uncomfortable for him I know). But daddy's docs are happy for my dad, still work with him so he's comfortable, and say he knew best what his body needed or didn't need.

 

If I had cancer in my thyroid, or my labs were still out of control even, I'd understand this push for RAI. But none of that's the case. I wish I could find new doc. (That's a mission I'm actively working on — and my new pharmacist is helping me look, but so many docs are not taking new patients.) I can't even get new endo. When I asked my GP for referral to a new endo in different medical group, he said no. :blink:

 

But there's that saying, that living well is the best revenge or something? That's what I'm going to do. :wub:







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