Eating small amounts of food leaves me feeling weak and shaky. Any idea's greatly appreciated. X

[nezzykins]

This is a new symptom yet again! This doesn't seem to fit in with the GD, but ive lost 20lb since my drama with Quetiapine( as mentioned in my previous and accumulating questions sorry), but doesthis fit in with anyone's experiences with Graves? I am mostly living on Complan drinks as I am beginning to become intollerant to any amount of solid foods. I become extrememy weak and shaky if I try to eat anything solid. I also suffer from gastric reflux and have to take Lanzoprazole at night due to regurgitatuin of stomach acid. I inhale it in my sleep. Its terrifying to wake up choking and the taste is disgusting. Burns my lungs and throat. Can anyone make a connection to Graves with this? A forum member has suggested betaine with pepsin, which I tried to no avail. I hope that I have put this question on the right forum as everything that's happening to me at the moment, seems to be connected to the hypo crash I had in January. Many thanks. Lynne x

[Jackie]

Hi Lots in your post so difficult to sort out. Is your thyroid now stable, TSH, T4 and Free T3? Have they been tested recently, ?As you know Graves often swings between Hypo and Hyper, so frequent bloods essential.

Proton Pump inhibitors are usually taken first thing, if double, as I do , then mine are still taken am, gastro and hepatologist,who told you to take them all Pm? may be they should be split am or pm.Overall your problem sounds like either pancreas or Gall bladder, both autoimmune diseases. gall bladder, if lucky, shows on an ultra sound.pancreatitis, more complicated. if enzymes, the most likely if no pain ( pain is very bad and referred [pain) then that will show on an enzyme test, a specific stool test called a Faecal Elastase test. Idiot [roof results. Treatment with Creon ( not a drug) 20mins before any food. Can be bought H and B but script best.This is all Heptatology, far better than a gastro.

Are you sure you do not have sleep aponea?

Jackie

Not sure if you know to reply to a post, click on "reply to this, under the post.

[nezzykins]

Hi jackie. Thanks for reply. My latest thyroid tests show my TSH to be 0.07mU/L. Note attached saying "low results indicate adequate levothyroxin replacement ; original result: 0.07 mu/L ( 0.27-4.20)."

Serum free T4 level = 20.1 pmol/L

My health authority do not test for T3 END OF, but I did manage to persuade Gp to do my T4 which the lab reluctantly do for many patients!

My acid reflux has been a problem for 14 yrs and I have been taking Lanzoprazole intermittently ever since. It gets worse when I am on the higher side for some reason and subsides when I am more stable.

I am sure that I do not have sleep anpnoea Jackie. I think my partner would have picked up on that as he does have it! The acid reflux developed just before the Graves if thats any clue to you? I am now getting checked for Active B12 test with full thyroid panel and lipid levels at Spire and am awaiting results at the moment, as my fingers and toes feel tingly, and having probs with my tongue which shed its skin, went swollen and bright red. Thought this could be due to the amount of time ive been on Lanzoprazole. Trying to come off them but the choking in my sleep is so scary. Tried betaine with pepsin that was suggested by a member, which help in the daytime, but its in the early hours when I regurgitate the acid and have almost choked a couple of times due to this. All of this since taking Quetiapine! They really ******* my whole system up big time! Lynne x

[nezzykins]

Ps sorry forgot to say that I take 30mg of the Lanzoprazole at about 6pm before my last meal and do not eat anything else until the morning dose of Levo at 7am just with water only, then breakfast about 10am ( this is usually Complan mixed with milk as this doesnt bloat me. Thought of food in the morning- yuck. Have lost 20 lb since taking the Quetiapine for 6 to 8 weeks, back last october, then CRASH BANG WOLLUPP. Lynne x

[Hidden in reply to nezzykins]

I can't stand breakfast either - maybe force myself t eat about 11am.

Red tongue = low B12 - too late to give a link as evidence sorry!

Wish I could lose a bit, then again would be worrying more J x

Please research long term 'zole ppi - will incur magnesium loss (amongst other stuff inhibited)

mhra.gov.uk/Safetyinformati...

[nezzykins in reply to Hidden]

Hi spareribs. Yes, B12 deficiency is one of the things I have been concerned about. My Gp told me that she had checked my B12 but in my lab print out form yesterday, there is no evidence that she took it! Another important fact ive leanred from the forum, is that it should have been an Active B12 anyway, so I took myself to Spire, and had the active B12 blood test done, as well as a full thyroid profile ( as my Gps only check the TSH unless you beg for your life! So...... I am awaiting the results at the moment which they tell me will take 2-3 weeks to process. Also just to mention that my GPs told me that my TSH and T4 are within normal range. When I checked the print out, my Tsh was 0.07 and T4 was 20.1. I was told by the nurse practitioner that my TSH was .7 and T4 was 18. They literally lied to me! It only takes my body a slight shift to make me feel really ill. I seem to be very finely tuned as far as thyroxin is concerned. If the reflux continues after reducing my thyroxin down to 75 from 75/ 100 alternate days, I will once again pay to see someone private about it. It definately needs checking out if it continues due to the NOW 20lb weight loss since January. Lynne x

[nezzykins in reply to Hidden]

Ps. Thanks for link x

[puncturedbicycle]

Poor you, how awful.

Is coeliac disease a possibility? Acid reflux is a symptom. And of course it is autoimmune.

Your story reminded me of Shauna Ahern, who says that when she was diagnosed was living on a jar of baby food a day: glutenfreegirl.com/about/

[nezzykins in reply to puncturedbicycle]

Thanks for reply puncturebicicle. Yes, Coeliac is a possibility and this will be my next port of call so to speak. I feel as if I am going around in circles as far as my own GPs are concerned, so I am investing a lot of cash into getting tests done at Spire. Im getting very scared of the NHS. as someone mentioned on here " its a lottery".

[puncturedbicycle in reply to nezzykins]

I'm shocked that your gp will leave you living on Complan. Have you tried writing a strongly worded letter detailing your issues, that you are no longer able to eat solid foods etc and if they refuse to investigate and treat you they're leaving you open to all kinds of complications? Insist on the letter being filed in your records.

If you have antibody tests, even if the tests are negative, it would be good if your gp would refer you for an endoscopy to see what's going on in there.

Keep in mind also that Complan is milk-based, and if you're sensitive to dairy it may be doing more harm than good.

If your gp absolutely refuses to get involved, I'd try a gluten-free and dairy-free diet. You could try juices and purees if you're still not able to handle solids. If you can cope, you can try stewed fruit, scrambled eggs, mashed potatoes, that kind of thing. Chuck some rice protein in there to add goodness. If you can't stomach that you could try a fast for a few days, not that I think fasting is good, but if your stomach is so badly distressed you need to find something to give you some relief, even if it's temporary. You can reintroduce foods one at a time and this will help you pinpoint what agrees with you and what doesn't.

That's all probably too much blather from me, but your situation sounds so unpleasant and it would be good if you could make a start in the right direction. You can't feel this way forever. xx