[gatorgirly]

#1058888

Hi all,

Some of you probably remember my story – diagnosed two years ago at 25, no relief after a year of PTU, RAI one year ago, finally hypo 22 weeks later, but all kinds of GI problems since the RAI (not blaming the treatment, just noting the timing).

I found out I had GERD about two months after RAI. Also diagnosed with a peptic ulcer and gastroparesis three months after RAI. Negative for celiac. Took 80mg omeprazole and lots of Tums. Gastroparesis seemed to be getting worse around early December 2011 – there were only a handful of days between December 1 and February 1 that I did not leave work early (I work in a stressful PR environment). Spent all of Superbowl Sunday in the ER with norovirus. Moved home to Massachusetts second week of February for a number of reasons, primarily for a new job that I sought out because of homesickness (five years in Florida when I’m a true New Englander!).

The week before I moved, my GI determined I was lactose intolerant. I was SO disappointed because dairy is a huge staple of my diet. I love a tall glass of cold (skim) milk, ice cream, yogurt, extra sharp chedda – you name it. It’s been a month now. I am trying to limit dairy but I simply can’t eliminate it, so I take Lactaid/lactase supplements with any drink or meal containing lactose. I am not noticing complete relief, even with small amount of dairy (like the amount in a bagel with one egg and one slice of American cheese) despite taking three lactase pills. I am in between health insurances, thanks to the long lines for the Massachusetts subsidized plans, and I don’t want to activate my Cobra from my last job for $800+/month, so I’m trying to self-medicate my symptoms with the lactase, as well as Gas-X and Immodium AD for the symptoms (ice cream is so far the only thing that causes me to be extremely sick). Fortunately, the horrible pains and IBS-like symptoms I’ve had since December can be attributed to the lactose; gastroparesis no longer seems to be an issue (I WAS definitively diagnosed in May via a gastric emptying study but the omeprazole has obviously nipped it in the bud).

Anyway, long story short – has anyone developed a lactose intolerance with Graves or after RAI? I know lactose intolerance tends to develop later in life, as our bodies pretty much have a limited supply of lactase enzymes and I’ve definitely had more than my fair share of dairy products in my 27 years, but it is SO frustrating. I love to bake, and milk is in almost every recipe. Lactaid milk just doesn’t taste the same, and I hate soy milk. I purchased the Lactaid ice cream and will try it tonight, but it’s expensive and hard to find and ugh! My friends can’t believe it when I leave yet another doctor’s appointment with a new diagnosis – Graves, TED, GERD, gastroparesis, lactose intolerance…what’s next? I can only hope my 50mcg/75mcg alternating doses of Synthroid are doing their job. I feel fine other than the lactose problems.

[size 10]On a side note…[/size]
[size 10]In a recent staff meeting (literally right before I left my FL job to move to MA) where my Superbowl hospitalization came up, someone made the comment that she was 50 and had never been hospitalized. Someone else responded, “That’s because you’re a vegetarian and you run marathons.” As if the reason I have Graves and TED and all these GI issues is because I eat meat and was a gymnast up until three years ago instead of a vegetarian runner? I was so miffed by that comment.[/size]

[Bobbi]

#1170694

Unfortunately, gatorgirly, some people absolutely believe (at least for a while) that if they do everything “right” (whatever their definition of “right” is), that they will not get sick, need surgeries, etc. They can be seriously annoying in their certitude. Anyway, there is typically nothing that any of us can do to avoid Graves. None of us did anything “wrong. ” We are not being punished for doing something wrong.

I’m sorry to hear about the lactose intolerance issues. I suppose it’s good that you now know what is going on, but it’s bad that it affects a food form that you love. I wonder if strictly limiting lactose for a while could allow your body to “detoxify” so that eventually small amounts of these favorite foods, combined with the anti-lactaid pills could be tolerated?

And, to answer your question: I’ve been writing to this board for a long, long time (I was treated in late 1996), and you are the only person I can recall developing a lactose intolerance after RAI. If there were any others that I missed, they were very few and far between. And I haven’t read of any substantive scientific studies on the issue. There’s a lot we still don’t know, but coincidences do happen.

[Kimberly]

#1170695

Hello – I’m not aware of a connection between lactose intolerance and RAI, either.

Hopefully, this will turn out to be a temporary blip, but I just wanted to mention that if you do end up with a dairy-free lifestyle, there are some online message boards and Yahoo! groups that have a lot of knowledgeable members and can help you with the transition.

I went gluten, dairy, and egg free for the better part of a year when I was initially diagnosed, and sites like that were a huge help — the members can give you ideas for good substitutions that still taste good.

As a side note, I didn’t end up maintaining that diet…I didn’t see any symptom relief, and the high maintenance lifestyle was seriously stressing me out!

[gatorgirly]

#1170696

Wow, 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.

[Kimberly]

#1170697

Hi Gatorgirly – I actually started down that path after seeing a naturopath who was recommended by my General Practitioner. (I was also under the care of my endo at the time, who was doing regular blood tests and adjusting my Methimazole as needed).

The naturopath’s theory was that we can have hidden food allergies…and that having the immune system running amok due to allergies can aggravate autoimmunity. So they did a blood test and found all of these “food allergies”, all of which I eliminated for a while.

I’ve talked to some people who swear that this type of dietary approach was really effective in providing symptom relief, but I personally didn’t see any benefit. However, I did notice that I feel better when I don’t *completely* load up on gluten during a particular day.

Hopefully, the challenge test with dairy products will give you some insight as to what is going on.

[gatorgirly]

#1170698

Well 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.

[Kimberly]

#1170699

Wow, keep us posted on what your endo says! Different brands of replacement hormone use different inactive ingredients, so maybe your doctor can suggest one that does not contain lactose. Perhaps there are alternatives for the other drugs as well.

[Bobbi]

#1170700

Check with your pharmacist about preparations of levothyroxin (the active ingredient in synthroid) that do not contain lactose. Long ago, when I was newly diagnosed, there WAS a brand of replacement hormone that was manufactured without lactose. So there may well be one available.

[gatorgirly]

#1170701

I’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.

[MomOfBri]

#1170702

Hi gatorgirly,

My 24 year old daughter was just diagnosed with Graves. She just got the iodine uptake results today and it was 83%. She also has lactose intolerance that seems to have gotten much worse lately. I can remember her being lactose sensitive since way before the Graves, but lately it seems to be much worse where within minutes of milk, cheese, yogurt she is running for the bathroom. She is scheduling the Radioactive Iodine to kill off her thyroid gland asap. So I can tell you for sure the RAI didn’t cause the lactose intolerance because she hasn’t had that yet. Probably within the next two weeks.

Can anyone tell me how high 83% is in comparison to other Grave’s sufferers? Does that number alone correlate to how serious or advanced the disease is?

Thanks!!!

[Nicholas]

#1170703

I was also just diagnosed with lactose intolerance, a year after my second RAI. I am not suggesting there is any established connection with lactose intolerance and RAI.

However, since my diagnosis I have asked my physician to switch me from Synthroid to Levoxyl since Synthroid contains lactose as inactive ingredient. I will post my experience after I receive the new medication and give it a try.

[Kimberly]

#1170704

Hello and Welcome!

Thanks for sharing your daughter’s story with lactose intolerance. Each lab has its own “normal” range for the RAIU uptake & scan, so your daughter might want to ask for a hard copy of her results.

In addition to being used for diagnostic purposes (high uptake that is evenly spread throughout the thyroid gland is indicative of Graves’) the % is used to calculate proper dosage in patients who choose RAI as their treatment option. (Medications and surgery are two other treatment options available to patients; all three options have risks and benefits, so it’s definitely important to do your research prior to making a final choice).

Wishing you and your daughter all the best!

[PolishTym]

#1170705

Around the same time I was diagnosed with Graves’ I lost my ‘rock gut.’ I couldn’t take milk, nuts, and gluten anymore. My endo said it was chance timing, but my endo surgeon said they were related. Apparently, there is not convincing data one way or the other. I believe the endo surgeon–the timing is too strange and the multitude of problems odd. Best wishes resolving your situation.

[gatorgirly]

#1170706

Nicholas – 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.

[Bobbi]

#1170707

I think that part of the problem of deciding what is related, and what isn’t, has to do with the fact that hyperthyroidism puts immense strains on many body systems. Some of us may have some weak links in those chains, and strains from being hyperthyroid can cause them to break. Others of us do not have the same weak links. In my case, my gall bladder went wonky after successful treatment. My surgeon explained that gall bladder disease often presents itself after “rapid weight loss” which is most definitely what happened in my case. Whether that’s representative or not, I don’t know. If we turn up with a condition, after treatment, it is likely that we will blame the treatment, rather than the hyperthyroid condition which caused the strains in the first place.

[Author]

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