# In remission from Graves but flare up of Ulcerative colitis



## kathlav (Mar 26, 2013)

could it be that stopping taking carbimazole for Graves has led to a flare up of ulcerative colitis, haven't had a flare since before being diagnosed with Graves back in 2011.

And does anyone know if mesalazine (the drug I take for UC) can trigger a graves flare? otherwise I am in a catch 22 situation here. Dammed if I do and dammed if I don't.

My Endo says my bloods are fine (only did TSH), but also said I don't need to see her till January and to carry on not taking any meds.

Thanks


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## Lovlkn (Dec 20, 2009)

Hi Kathlav,

An endo treating a patient for Graves - whether active or in remission should NOT be testing you by TSH alone.

I had horrible digestive tract issues while hyper and hypo.

I'd be curious to see your last Free T-4 and Free T-3 testing prior to reaching remission. Few reach and stay in remission, but rather are on the teeter totter of blocking and stimulating antibodies which make us feel "normal" for periods of time. The only true way to know if you are in a remission is TSI testing - did your endo do that test on you?

I'm sorry - I do not know the drug interactions for what you are taking.


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## kathlav (Mar 26, 2013)

Hi Lovlkn,

I have never had my FT3 tested, I had my TSI tested twice right in the beginning of my diagnosis and this was not done by my endo but by my local GP. It was slightly elevated both times (0-50) 120, and 131, so nothing major, I have tried for remission twice before and this is my final attempt, and in all honesty was expecting my TSH to be rock bottom with this last blood test, but apparently not and all is good(with TSH at least) and have been told my next endo appointment will be January, I have one more blood work sheet to use between now and then, but again only TSH.

This has not been the norm during my treatment I have always had at least TSH and FT4 tested, it has only been since this last try for remission that only TSH has been requested.

I had in all honesty resigned myself to having to choose between ablation or surgery, this time round, and maybe I still will, what I hadn't bargained for was a flare up of My UC.I was just wondering if there may be a connection between me being unmedicated and the flare and whether the medication for my UC mesalasine which contains salicylic acid ie aspirin.

I have had problems with taking aspirin in the past, but really don't want to go down the steroid route, and will risk the possible side effects, for a short while to see if I can get this UC under control.

Thanks for replying , will go to see my local GP if things get any worse.


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## Lovlkn (Dec 20, 2009)

> It was slightly elevated both times (0-50) 120, and 131, so nothing major, I have tried for remission twice before and this is my final attempt, and in all honesty was expecting my TSH to be rock bottom with this last blood test, but apparently not and all is good(with TSH at least) and have been told my next endo appointment will be January, I have one more blood work sheet to use between now and then, but again only TSH.


FYI - Any TSI is a positive, even if below the range. As long as you have TSI you are not actually in remission. You are "stable" with whatever symptoms it may create.

If you choose to do something permanent - choose surgery over RAI. You are immediately hypo - therefore it is much easier to stabilize. Plus, if you have any eye involvement at all you need to avoid RAI

If you decide to run your own labs - just to see where you are have $59 to burn http://www.healthonelabs.com/pub/tests/test/pid/167

They email you the results the next day - this lab request has some useless tests but also contains what we use to see where our levels are - the FT-4 and FT-3 and they do a TSH so you can compare to what your doctor has run.


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## kathlav (Mar 26, 2013)

The last blood tests I had, were taken on 3rd of June, unfortunately this was the appointment I had with the completely different Endo, who was concerned about my heart and did a quick ECG there and then , and then also wanted the 24 hour urine test, so I was too occupied thinking of other things to even ask what my results were, other than they were still good.

My blood test before that was in March and Free T4 15.3 (12-22) and TSH 2.1 (0.3-5.0) and I had been taking 5mg of carbimazole every other day for quite some time, my TSH had been gradually rising.

I have been experiencing a few symptoms for the last few days burning ,tingling, tongue, feels like I have a mouth full of baking soda, constant mouth watering almost like am going to vomit(but without the vomit) sorry if too much info, and I am seriously thirsty. I normally don't drink a lot and have been told a couple of times by Endo after blood tests that I am dehydrated.

Could I be lacking in any minerals, vitamins that can cause this?.......could it be thyroid related? or possible malabsorption because of intestinal problem?

Any ideas?

Thanks in advance.


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## Lovlkn (Dec 20, 2009)

> burning ,tingling, tongue, feels like I have a mouth full of baking soda, constant mouth watering


Is your saliva and tongue white?

If so, sounds like you are having a candida flair up. DO you have Candida issues?

DO you regularly take Probiotics?

http://www.ncbi.nlm.nih.gov/pubmed/19439813


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## kathlav (Mar 26, 2013)

Hi Lovlkn,

No ,tongue not white, and yes I have and do suffer with candida but not of late. No I don't take a regular probiotic, I have done in the past.

I did a little more research online after I posted yesterday, and found that a lack of calcium can cause burning tongue. So immediately raided my medicine cabinet and found some calcium + vit D tablets and took with my evening meal.

I don't know if it is possible for these tablets to work so fast, but a marked improvement today. Could I have a calcium deficiency, again this all points questions to the state of my thyroid and parathyroids ? I presume.

I try to avoid supplements during a UC flare as sometimes they can aggravate, also depends if you can actually eat a meal with the supplements. With calcium its suggested to be taken with a meal, I have cut out a lot of my dairy products as It can trigger a flare. Of course almost everything it seems triggers something either thyroid / UC connected, and when in a flare it becomes very difficult to find a diet that accommodates both, without starving myself.

Thankfully I am not yet totally in the grip of a full blown flare, but if it gets any worse it carries it own momentum and not much I physically do seems to halt it, it has to run it's course. However long that may be.

Thanks for your concern, I will stick with taking the calcium and vit D and may start with a tablet form probiotic as I certainly don't want thrush(candida) thrown into the mix as well !! I have been suffering with an awful cold/flu for the last 2 weeks, so am feeling pretty low at the moment.

Thank you


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## kathlav (Mar 26, 2013)

Hi,

Went to doctors yesterday as my UC medication is running low and saw a locom doctor. Since my last post I am swinging between constipation and dioreah, with all the other symptoms of UC thrown in fatigue, headache, mucous and blood in bowel movements, bloating, tummy pain , have been sticking to a bland diet, mostly mash and fish a small amount of bread ,I don't drink alcohol anymore anyway or coffee, but I do drink the occasional cup of tea.(British can't help myself)!!

I have started drinking a complan shake a day as it has some nutritional value and is loaded with vitamins and minerals. This doctor was quite thorough and did a BP reading which was slightly elevated 147/91. He has suggested I carry on with my UC meds and the dietary routine I am following at present as at the moment I have not moved my bowels for a couple of days and it could be that the inflammation is subsiding.

He has ordered a full blood test, with liver panel, kidney function and electrolytes, ESR (inflammation marker) and C Reactive Protein (another inflammation marker).He has also ordered thyroid function tests whether that will be FT4 and TSH I don't know.!

I found out my last TSH reading done in the first week of September was 1.15(0.3-5.0)which is just about right. The fact that in March it had been 2.1 makes me wonder if it is gradually falling and I am not in remission at all, especially with the elevated BP!

Lovlkn, thanks for your advise I had already made my mind up to ask for the surgery, if given the choice, for exactly the reasons you pointed out. I do have mild eye involvement nothing horrible though.

I have been on a half term holiday for the last two weeks (I work in a school) and was hoping this was getting better before having to go back to work, unfortunately if it gets to the 32 toilet breaks a day that I had the last time I was flaring I will have to take time off work something I have never had to do with either UC or Thyroid problems. Just lucky so far I guess!!!

Just thought I would keep you posted on my progress, and so far no burning tongue ! (yey)


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## jenny v (May 6, 2012)

Ugh, I wouldn't wish UC on my worst enemy, it sounds so horrible! Have you ever asked your doctor about L-Glutamine powder? I've seen some info on the web recently that says it's being studied as something that can help calm inflammation in the intestines and help them repair themselves.


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## kathlav (Mar 26, 2013)

Hi jenny v,

Thanks for your reply, no I have to say the L-Glutamine powder is new to me!......but I shall be googling like mad very shortly, I will give anything a go. My worst fear is that I get a full on flare and my remission for Graves fails. The last time I had a bad flare, I lost about two stone admittedly I was diagnosed with Graves shortly after as well so both were playing a part.

But I have never felt so weak and helpless, I don't think I was far of being admitted to hospital for being fed nutritionally by vein, to give the intestines a complete rest. Not a pleasant thought especially with graves symptoms on top!

I have been trying Buscapan, an over the counter med for IBS it may be that , which has put a holt on the loo visits for the minute.

But shall definitely look into your suggestion, Thanks .


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## Lovlkn (Dec 20, 2009)

http://www.healthline.com/health/ulcerative-colitis-take-control-probiotics



> Probiotics are probably not useful in inducing a faster remission during a flare-up of ulcerative colitis, however, the preparations of healthy bacteria may make the symptoms less severe. Probiotics may be helpful in increasing the time between flare-ups. This benefit may be even more impressive when added to standard maintenance therapy. While probiotics are generally free of serious adverse events (side effects), it is important to consult with your physician before adding probiotics to your ulcerative colitis treatment regimen.


You have nothing to lose by increasing your probiotics. It might even lessen your symptoms.

Since UC is caused by an imbalance of healthy digestive bacteria the probiotics might help.


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## kathlav (Mar 26, 2013)

Just thought I would update, and ask another question if I could.

I was walking my dog on Saturday and slipped, badly dislocating and fracturing my ankle in 3 places, this is the second bone break incident since being diagnosed with graves in Aug 2011. I am still in remission since july 2014, bloods still looking ok, I had a battery of bloods taken on Saturday and I was sound enough to mention to them that a had graves and UC, so would assume that those bloods were tested aswell.

I am on Tramadol and paracetamol for the pain....in all honesty not in much pain at all, so have been only taking tramadol at night and having to inject myself with Tinzaparin everyday to thin my blood. A little worried in case I start bleeding from my uc, but so far nothing.

I have had a plate put in one side of my ankle and pins in the other side. My question is how much can Graves effect bone density?, I havn't had a bone density scan but am considering asking for one. Also although I am officially off the books with my endo, next apt scheduled for Jan should I let her know the situation I am in now?

Thanks in advance

Kathy


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## joplin1975 (Jul 21, 2011)

Just dropping off some sympathy...I did my ankle a year and a half ago...a plate and seven screws. I hope you are feeling better!


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## kathlav (Mar 26, 2013)

Thanks Joplin,

How long did it take you to fully recover, I am signed off for 6 weeks so far but have no Idea after that. Because of the dislocation I think tendons were also damaged quite badly.

My dog hasn't left my side since coming home a couple of days ago, which can be a little difficult when trying to get up with crutches.

I hope you are well and thanks for the support.x


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## joplin1975 (Jul 21, 2011)

Oh, man. I can relate. It's just miserable and I'm sorry you have to go through it.

If you can get something like this (I rented mine from a medical supply store) it is worth its weight in gold: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0CAcQjRw&url=https%3A%2F%2Fwww.goodbyecrutches.com%2Fturning-knee-scooter&ei=3gZuVID6F4SqyQTckYLgBQ&bvm=bv.80120444,d.aWw&psig=AFQjCNHpvX6QXXhIMh1DChAZgDhwoHxakw&ust=1416583270692388

I was suppose to be out of work six weeks, but I got a terrible case of cabin fever. I got a ride to work for two days during week three. It was my right ankle and during week three I started moving it as much as possible. No weight bearing, but simple movements. They never put me in a cast (my husband is an ortho pa and he convinced his boss that we'd be careful...he wanted me to move it as much as possible to speed up recovery). By week four, I could move it enough that I could drive. I would wear a figure 8 brace on it when I drove and then when I got to my office, I would put my boot back on and use my crutches. So, I went back to work part-time during week four.

Everything was healed by week six, so I started weight bearing with crutches and the boot. i think by week eight I was in a figure eight brace and sneakers. I limped, but I walked. I think things started to feel more normal (that is, I wasn't limping like a mad woman) by week 13 or 14.

I did my ankle on March 17th and could jog short distances by early July. I started riding the horses again by mid-July. Throughout that fist year, I had lots of aches and pains and stiffness. It took about a year for all the swelling to go down and for it to feel "normal" again.

Hang in there!


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## kathlav (Mar 26, 2013)

Wow,

That's some recovery time! Looks like you had some great advise! I have been told no weight bearing for 6 weeks and to elevate my leg to keep swelling down, I am sure I shall be advised further when I go to fracture clinic in a week or so's time.

My brother came over this afternoon and he is an osteopath, he thinks it is going to be around 3 months total until I am able to go back to work properly.....!

My job as a school science technician is one where I am on my feet all day, and have to be stable enough to carry equipment to and from class rooms, some of it dangerous chemicals! and awkward glassware.

Not sure I would be allowed back for safety reasons unless I am fully recovered. I also don't drive. I have a half hour walk into work and back home. Just hoping we don't have an icy winter this year!!

The scooter looks like a good idea, glad it helped you, I will enquire about it at the fracture clinic when I go. It's encouraging to know that you have full use of your ankle now and are able to do all the things you enjoy in the same way.

Thanks, that's what I needed to hear.


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## kathlav (Mar 26, 2013)

Well,

It's nearly a year since I fractured my ankle, and you were right Joplin, things are still stiff and swollen for a lot of the time, but I am able to do mostly everything I used to. I still come down the stairs a bit awkwardly first thing in the morning before my ankle has woken up! But on the whole ok, I ended up with some nerve damage to my toes and knee, which has taken a bit of getting used to.

As far as I know I am still in remission, but a few symptoms like feeling shaky inside, a few episodes of palpations and thumping heart, and slight hand tremors, disturbed sleep have lead me to my GP for blood tests I am also having a bone density scan done on the same day!

All this being done next Thursday , this will be the first time since being diagnosed that FT3 is being tested! and a full autoimmune antibody test.

Really hoping Graves has not made a return


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