It has been a year since I have last posted probably 2 years since I first found this helpful forum . My problem then underactive thyroid and unexplained weightloss. After having a thyroid scan ordered by my endo a year ago it was found that my thyroid had shrunk he diagnosed atrophic thyroiditis. I had been previously on 50 mcg levothyroxine then 75 mcg for about 8 years before demanding and endo referral
My endo said that I had had antibodies some time ago that had destroyed my thyroid and then had disappeared at present no antibodies detected. After a year of bloating and wind and doctors not really bothering I did my own at home stomach acid test using bicarb of soda and warm water I knew something wrong after 20 minutes and still no burp . I went to doctors told them my findings and demanded gastroenterologist referral which I have end of April. in meantime I had my endo app I told him about the bloating he ordered a faecal elastase test and finally just been diagnosed with borderline severe exocrine insufficiency which is the medical term for very low stomach acid this is what has caused my weightloss and vitamins defiiciency and doctors hadn't even be bothered enough to test wld have just given me omeprazole.
My question do any of my fellow thyroid sufferers have exocrine pancreatic insufficiency. I know treatment will be digestive enzymes.
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Bookworm1961
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HI there. I think I probably have this as same symptoms and exocrine insufficiency and pancreatitic, liver problems and Hashimoto’s are all common with Sjögren’s Syndrome which I have. Sjögren’s means exocrine secretions all around the body dry up. It might be worth you looking this condition up.
I have heard about Sjogrens but not been tested yet. As M7-cola mentioned Omeprazole will cut stomach acid even more so when doctor mentioned it I refused to take it as he didn't even know what my problem was just assumed too much stomach acid. I have yet to reply to Slow dragon yet as need to pull out my blood results page so can post those. Thing is I do not drink alcohol or smoke. I eat healthy no fried food lean protein eg beef chicken fish not battered. I knew something not right as was getting bleeding cracks on my fingers from August last year up to early February the docs kept telling me to use steroid cream which did nothing. when I did the bicarb test and found low acid I thought wonder if lacking in something had bloods tests done the docs said all ok my ferritin was 58. I've read on this forum shld be at least 70 so purchased iron daily oral spray that avoids stomach and within 2 weeks the cracks had gone.
Hi M7-cola I have only been taking Holland and Barrett full spectrum enzymes for few weeks until can see gastroenterologist at end of April was shocked when my endo sent me a letter but feel releived that I'm not going mad just another part of me not working properly😅 explains why my folic acid and ferritin were low and doctors said it was range.
Being under treated for Hashimoto's and on too small a dose of Levothyroxine can cause low stomach acid and low vitamins
Are you still only on 75mcg Levothyroxine
Can you add recent TSH, FT4 and FT3 results
When were vitamin D, folate, ferritin and B12 last tested? Add results and ranges if you have them.
What vitamins are you supplementing?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Hi Bookworm1961. Like you, I haven't been on this site for quite a while because I've been so ill. I have osteoporosis and been on levo for 30 years. My symptoms started 2 years ago with weight loss, bloating etc. I booked to see an endo privately after having wasted 2 years of my life with NHS. He diagnosed me with SIADH but thought it was something I'd been suffering with for years as my salt levels were always wavering below range (NHS didn't acknowledge this! He suspected pancreas problem and sent my bloods to a special test centre and came back as EPI. At last a diagnosis, I was over the moon weighing only 6 stone at this point. I have been on Creon now for about 2 months and I'm still trying to get the correct dosage but I definitely feel a lot better than I did. I did ask my endo if there was any connection to my thyroid but he didn't seem to think so but said EPI wasn't his field of knowledge and advised me to see gi. I also asked him if there was a connection but he didn't know!!!! How are you now? Have you been given Creon? Do you feel a lot better? Hope you don't mind all the questions
I have been taking Creon 25000 since May with thankfully no side effects. I take 2 of these with main meals and 1 with substantial snacks in between. my weight is till between 7 and half stone and 8 stone but have noticed I don't get diarea like I used to and flatulence and bloating has improved. Like you I was glad they put a name to it but after the CT scan they said pancreas is ok but havnt said why I am not producing much stomach acid. I have been sent a letter to book an appointment with a dietician ...... I don't know if they are querying food allergy although I not got ceiliac. Sometimes low stomach acid is part of normal aging some say it's due to hypothyroid......... I will make appointment and see how it goes sorry for late reply as I was at work
Sorry for my late reply Bookworm. That's what I need, my dose increasing then I'm sure I feel better. Sounds like you have everything under control, that's great. I forgot to say that I was wondering if you might have SIADH also. Do they check your body salts regularly. Thinking about this, I think it adds to my EPI problem! It's good they've thought of you seeing a dietician, I'll push for an appointment too. Thanks
Hi Bookworm, I was advised to read about parathyroid problems. Here is a link with very useful information, I found it rather mind blowing! Hope it helps.........youtube.com/watch?v=sD9st1Z...
Hi Pat ash. Thank you for sending g the link I can't access it on my mobile but later will see if I can open it on my laptop My dietician appointment is at the hospital early December. I was referred by my gastroenterologist. I have been reading that tummy issues can cause lots of health issues I have eczema on fingers on my left hand that don't respond to steroid creams and was reading something g about a woman who had suffered with eczema for years until her tummy issues were sorted. my back aches most of the time and my knees but that could be due to osteoarthritis maybe and osteopaenia
I have aching bones and horrendous back pain due to osteoporosis Bookworm. Ive also read about a lot of people with skin issues due to tummy problems. I think also you need to check your magnesium levels and other vitamin levels. The link I sent to you explains further. Good luck on your journey to better health x
Sorry meant to say I was diagnosed with osteopaenia 2 years ago. at present I not only Meds for it just exercise try eat right supplements etc. do you think your osteoporosis could have been caused by poor absorption of food due to yrl tummy problem
So sorry for not replying sooner Bookworm, I hadn't noticed you'd replied again!!! Or is it me getting mixed up! I do think this website is user unfriendly though! I think it was the SIADH that went un-diagnosed for many years that caused my Osteoporosis as it causes you to be unable to absord nutrients. It makes me really mad that you have to pay to see someone privately to get a diagnosis
It stands for . . .Syndrome of inappropriate antidiuretic hormone secretion...the symptoms for me was diarrhoea, floating, sticky, smelly poop and a horrible knawing painful cramp in the pit of my gut. Oh and constant headaches. Caused because my pituitary gland is not releasing the correct amount of hormones. It started in small bouts lasting only a few days, but then ended up almost constant. Now that it has been diagnosed I have learned to control it at the very first symptom. Hope this helps and sorry for the late reply.
I had Antidiuretic hormone (ADH) blood test done. The first symptoms that arise with me is headache (I never have a headache otherwise), cramps in my feet when doing yoga, concentrated pee because it prevents the kidneys from working properly and insomnia. I control it by having Dioralyte which is an electrolyte powder mixed with water (It's electrolytes that are lost from the body not actual salt) after every poop, I drink smart water if I must drink water which contains electrolytes, do not fall into the trap of drinking more water as I was advised by NHS for years each time I complained of constant headaches. Water only causes you to pee out more electrolytes! I also take electrolyte supplements. yes GI as in gastrointestinal. I wish someone had told me all this instead of me having to find it all out myself
No cramps doing yoga as I do a slow warm up first. They think because I've done so many strong meds over the years, plus ive done a lot of self medicating on neat vodka when they haven't investigated spinal fractures because I could almost touch my toes 🙄 sent me home in agony on a few occasions. In fact it was when I did my last fractures earlier this year in Greece (I was self medicating for 48 hours before I got pain relief) they said also the trauma would have played a big part, then they pumped loads of morphine etc into me and again once back in uk that it sent my pancreas over the top. All tests show no pancreatic damage or any other organs, they said everything looked perfect! Hope this helps x
Ok probably because FB automatically signs me in. Just type the title into your FB app search bar and then click join and they will ask you a couple of questions first.
I think my osteoporosis was caused with them not diagnosing SIADH sooner. Even though I'm painfully thin now, ever since I was put on levothyroxine I lost weight all those years ago and many people classed me as too thin even then. I think you're on the right track with exercise, supplements and a good diet. Hopefully you can build back some bone mass without being put on levothyroxine. Good luck x
Hi I have been on Levothyroxine for 10 years. I noticed a slight weightloss but got worse 2 years ago. all I got from doctor initially was u should be lucky to be slim at yr age they r just not getting it. I did have something g wrong with me but has the levothyroxine done this to my stomachine acid. I will definitely look into SIADH
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