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in reply to: Newly Developed Lactose Intolerance #1170708
Thanks, Bobbi. I agree, and just to be clear, I do not blame RAI for my GI issues – just had to question the timing of the onset of all my issues. I blame the fact that I was very very hyper and then, after almost a year-and-a-half, become quite hypo. In short, I blame my thyroid, not the treatment.
in reply to: Newly Developed Lactose Intolerance #1170706Nicholas – Please let me know how the transition goes. I still have not heard back from my endo regarding the switch.
Strangely enough, I got really “sick” (I’ll spare the details – Google lactose intolerance symptoms if you really want to know) after eating Lactaid brand ice cream and then again after using Lactaid milk in my coffee. I decided to eat dairy at every meal on Wednesday, without taking any Lactaid. I was fine! I have since been eating dairy on a regular basis without Lactaid and have felt good for the first time in weeks. I think the LI symptoms were truly there, but maybe they were stress-induced rather than lactose-induced? This all started a few months before my 1,500-mile move, and my stress level was at an all-time high. Since I’ve been home, it seems I can tolerate dairy.
Bri’s mom – LI is no fun. Maybe she will experience the opposite effect than I did, and become more lactose tolerant after the RAI? Does she use Lactaid or just completely avoid lactose?
Tym – I too was told it could either be coincidence or related. I have been told by my endo and gastro several times that thyroid problems often affect the GI system and I surely can attest to that. I was fit as a fiddle until Graves.
in reply to: Newly Developed Lactose Intolerance #1170701I’ve still got several months’ worth of free Synthroid samples left. Since I’m still waiting on my subsidized health insurance, I’m going to take my Synthroid with a Lactaid pill. Much cheaper than throwing away all those free drugs and paying for a new prescription out-of-pocket.
I did some research, and Levoyxl does not contain lactose. Thanks Bobbi.
in reply to: Having trouble swallowing…is it the thyroid or…? #1170678I’m not surprised – your symptoms sounded eerily similar to mine. I’m sorry you have to deal with another health challenge, but reflux is manageable compared to heart problems or thyroid tumors.
Were you prescribed something or did they refer you to a gastroenterologist? I was initially prescribed Nexium (the purple pill) because the doctors at the hospital were getting a kickback for prescribing it, but since there is no generic, my gastro switched me to generic Prilosec/omeprazole. Just a heads up in case they tell you Nexium is the best drug for reflux – omeprazole does the exact same thing, just in a different way (according to my gastro).
in reply to: Newly Developed Lactose Intolerance #1170698Well I found out why my symtoms don’t seem to be controlled by restricting dairy and taking Lactaid pills when I do eat small amounts…
Synthroid, propranolol, omeprazole and Yaz (birth control) all contain lactose. I take all four, so although the amount in each is probably very small, it’s likely enough to upset my system. Interestingly, a pharmacist recommended Immodium AD for my lactose-related symptoms. Immodium AD contains lactose!
I left a message with my endocrinologist’s office yesterday. I don’t propose I stop taking any of these drugs, but it seems like I’ll need to take a Lactaid pill when I take my morning meds and my evening birth control pill. I hope that since Lactaid pills are nothing more than lactase enzymes and not drugs or supplements, there will be no issue with taking this at the same time as my Synthroid.
in reply to: Newly Developed Lactose Intolerance #1170696Wow, Kimberly. I would never willingly give up any food group! Kudos to you for trying, but I’m secretly happy you found it useless. I would never wish a food allergy/intolerance on anyone, and I’m so annoyed by the people who are giving up things like gluten simply because it’s trendy (not saying that’s what you did!).
My GI doctor doesn’t think this is temporary, but I do see validity in Bobbi’s suggestion to eliminate dairy for a couple of weeks, and then slowly try to introduce it back into my diet (with lactase pills, of course). I am going to have to pick up some Lactaid milk because although I can handle not drinking a tall glass of cow’s milk for pleasure, there is no way I can drink my coffee black or use that scary nondairy powdered stuff loaded with preservatives.
in reply to: Still exhausted! #1170715I took a month-and-a-half off from work shortly after I was diagnosed, simply to regroup and focus on my health. I wasn’t feeling all that tired before my “sabbatical” but I found that the more downtime I had, the more I took advantage of it. I would spend entire days in bed with my only trips outside being short walks with my dog, who was perfectly content to stay in bed all day, too. But once I went back to work, I found my energy levels increased and I was able to get through the work day without feeling tired much more easily than I could when I wasn’t working.
My point is – could you try going back to work, even part time? I think our bodies recognize weekends, days off and other time away from work and say, “Oh, we can sleep all day? Let’s do it!” But when it’s time to be awake and productive, they can manage. Of course, I didn’t have a thyroidectomy and I know it’s a long, slow recovery process, so I’m not entirely sure what you’re going through. I just know that I needed those six weeks off from work, but when I went back, it felt good – physically and mentally.
in reply to: Having trouble swallowing…is it the thyroid or…? #1170675I echo Kimberly’s suggestion to get an appointment with a gastroenterologist (or at the very least, a general practitioner). I had a slightly enlarged thyroid. Two months after RAI, I started having difficulty swallowing. I was even admitted to the hospital because of the accompanying chest/upper back pain. My ultrasound came back with a 7mm cyst – way too small to be palpable or the cause of my symptoms. It turns out I had developed severe gastroesophogeal reflux disease (GERD), which was causing that tightness in my throat and chest. I ended up needing an upper endoscopy where they inflated a balloon in my esophagus to relieve the buildup/damage caused by the acid. That was almost one year ago and I’ve had all kinds of weird GI issues pop up since, as has my good friend who also has Graves (but took the surgery route). My gastroenterologist and my endo both told me GI issues are common with Graves.
I started taking 200mcg selenium as soon as I finished my 6 months of prednisone for TED. Both my endocrinologist and neuro-ophthalmologist supported this decision. After about four months, I dropped down to 50mcg. I just moved and have been forgetting to take it consistently, but I’ve been having more headaches (could be a number of things, not necessarily the lack of selenium supplements) and I will try to be better about taking it.
If it works for me and my specialists support my use, I will continue to use it. There is nothing worse in this world (in my opinion) than prednisone, and I will do anything to avoid ever taking it again.
Also, I take a women’s daily multivitamin.
in reply to: RAI Questions #1170419Hi Karen,
I am 27. I was diagnosed at 25 and after a year of PTU with very little symptom improvement, my endrocrinologist advised that remission was highly unlikely. He had been warning me of that for several months, so I had some time to weigh my options. I met with an experience thyroid surgeon but in the end, decided at my age, the risks associated with surgery were too great since I was in otherwise great health.
I had the RAI in February 2011. I experienced nothing unusual – sore throat for a few days, hyper symptoms after about two weeks. I went back on the PTU for a couple of months and then slowly weaned off them until I eventually became hypo. To answer your question – no way. In my opinion, nothing is worse than hyper. Yes, the weight loss was nice but I lost all my muscle tone, slept like crap and was a horrible friend, daughter, sister and co-worker to everyone around me because I felt so miserable all the time. Yes, the post-RAI journey was longer than I expected but it was a journey to being well again, so one I was willing to take.
It took 22 weeks for the RAI to do the trick, and as soon as I went hypo, I developed moderate TED. That was a lot worse than any of my hyper/hypo symptoms. I started a very high dose of prednisone for the swelling and it did a number on my weight and my face (I never had acne until six months ago). I am now on a steady dose of Synthroid, alternating 50mcg and 75mcg every other day. I am so glad I chose RAI because I am finally well again and after much struggle in the past two years, can finally go back to intense workouts, long days at the office and still have energy left for a social life.
It’s difficult being young with Graves. We are expected to be healthier than our aging parents but for you and me, it’s hard to explain to our friends and peers how sick we really are even if we look fine. The weight fluctuations are so harder to handle in your 20s when you’re supposed to be in the greatest shape of your life. Please make your decision based on you and your instinct, not what anyone on here or anyone else in your life says – unless it’s a health care professional warning you against one treatment or another because of something else going on that RAI or surgery could affect.
Good luck with your decision!
I did not feel any more or less hyper, and I obviously couldn’t attribute the hyper I was still experiencing (as my thyroid took its sweet time to die) to the cyst. They did not remove it. Six months later, it was completely gone on its own.
Hi Leah,
I was admitted to the hospital exactly two months after my RAI with the same symptoms. It turned out that I had a very small cyst on my thyroid, but the radiologist and endocrinologist assured me that since it was so small, it couldn’t be the cause of my swallowing problems.
I underwent a barium swallow test, an endoscopy and a gastric emptying studying. I passed the swallow test but the endoscopy revealed esophageal stricture (narrowing of the esophagus), GERD (severe reflux) and a duodenal ulcer, and the gastric emptying study revealed gastroparesis.
The stricture and GERD were caused the choking sensation. I was literally regurgitating food as I ate. The tenderness was caused by the acid burning my esophagus.
If you get a thyroid ultrasound and the results are normal, I would make an appointment with a gastroenterologist. Several people I have met with Graves have all kinds of GI issues after RAI or surgery.
Good luck!
Kelly
in reply to: I am back after thyroidectomy! #1170163I didn’t even know it was possible to get domperidone in the US. I pay a reasonable price, so I’ll continue to get it from Canada for as long as it’s legal.
GERD is gastroesophageal reflux disease. Just a more severe, progressed version of reflux. My dad has it, so my GI thinks it may have been triggered by the Graves but that it’s probably something I’ll always have since my dad developed it around my age.
I was up all last night with severe stomach pains. It’s a good thing I see the GI this afternoon. I can’t start a new job (on the 13th) and suddenly have to excuse myself every 20 minutes or even go home early when the episodes become unbearable, so we’ve got to find a solution and fast.
I’m surprised neither of your specialists see the connection. I see a lot of people on here posting about GI issues after RAI, but you’re the first other person on here who mentions gastroparesis and since you elected for surgery and your GI issues started beforehand, it’s hard to believe the thyroid and GI issues are not somehow related. Both my endo and GI communicate regularly regarding my case, and of course include my neuro-ophthalmologist in their loop. They seem to all agree the problems are related.
Moving is stressful, but it sounds like we’re both moving to a happier place. Whether it’s down the road or 1,500 miles up the coast, I’m convinced a new environment can make a huge impact of our lives.
in reply to: I am back after thyroidectomy! #1170161Nicole,
Gastroparesis is a nightmare. I am also on domperidone (I assume you order it from Canada as well?) and it has helped a lot but I have noticed some stomach pains in the past few days. I think it’s nerves/stress.
Both my endo and GI specialist assure me that once I find a suitable and stable dose of Synthroid, the gastroparesis and GERD should settle down, if not subside completely.
I am moving from sad, lonely Fort Myers back to my hometown in Massachusetts in less than a week to start a new job, and I think it will improve my mood, and thus, my overall health. I hope you find the same peace, too!
Kelly
in reply to: Graves and abdominal pain #1170241Like Hope, I’m also older (27 to be exact) than your daughter, but since RAI, have had severe GI issues. It turns out to be GERD and gastroparesis, which is common in diabetics. I am nowhere close to diabetic or even prediabetic, but my gastroenterologist thinks it’s related to the ups and downs of my thyroid function since we have not been able to find a stable dose of Synthroid yet. I am now taking domperidone (a Canadian drug not available in the US) 30 minutes before meals and have been symptom-free since the day I started it. He also suggests four (4) Tums between meals. It has helped. Like others, I echo the recommendation to see a pediatric GI specialist. Good luck!
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