Hi all,
I’ve posted here a while ago. To cut my story short I fell ill around 11 months ago gradually over the course of a week or two it got worse and worse.
I’ve had everything checked by my GP, colonoscopies, MRI and CT scans and been to see numerous specialists but the only two results which have come back as irregular are my thyroid antibodies (TPO) and my faecal elastase result (which are low, twice tested, once 92 the other 120).
After advice from this site I’ve been gluten and dairy free since July. Gave me small energy benefits.
I’ve also been supplementing B12, Vit D, Zinc and Selenium which helped slightly too.
I’m still no where near the normal me though and my GP and endo on the NHS won’t prescribe me levothyroxine. I believe the main reason is because weight gain isn’t one of my symptoms. Is it a possible for people with hashi’s to have weight loss/or atleast stay at the same weight rather than the weight gain that is usually associated?
That being said I see no option but for me to go alone and attempt to treat myself.
Do you have any suggestions/advice on this?
From all my thyroid tests my TSH always seems to be just slightly above the ranges. So say the range was 1-3.5 mine will have been anywhere between 3 and 6.5.
I’ve only had T3 and T4 tested twice but T4 is middle to high of the range and T3 middle to low of the ranges.
Thank you
What Consultants are you under? What's being said /done about fecal elastase result?
Were you tested for Coeliac Disease (I would have thought so) and had you been eating lots of wheat products before test?
What are your symptoms? I would ask about the abnormal fecal elastase result.
I think I would ask to be referred to an Endocrinologist asap/ urgent.
Write a list of symptoms to show GP.
If you get an urgent referal to an Endocrinologist, hopefully you will be fully tested before being started on the right treatment.
- How high is your TSH now?
Could you get hold of all your results and add them to your posts. Include ranges in brackets and dates of tests. If in UK you can obtain copies of all your medical records free of charge since news regulations 25 May 2018.
You could also ask for an Ultrasound scan of your Thyroid.
Have you had any tests to check out your Adrenal function?
Have you had an Ultrasound scan of your abdomen to check Gallbladder, kidneys & liver. All OK?
I , personally , wouldn't start self -medicating. I would prefer to push for diagnosis first, FULL diagnosis.
Keep going back to GP & pestering for referals & diagnosis.
I also thought that Hypothyroid people all put on weight. However, since joining this forum, I have 'met' a few people who didn't or even lost weight.
Some also have Coeliac Disease and / or Crohn's or Colitis.
ps
Were you tested for B12, Vitamin D, Folate & Ferritin before you started supplements? Could you post any results. Have you been tested for Pernicious Anemia?
Hi Mary,
I’ve seen infectious diseases as my illness happened as I was living abroad (they fully cleared me).
I’ve seen gastroenterology and had a sigmoidoscopy and colonoscopy as well as a CT scan of the abdomen and pelvis and all has been OK.
The faecal elastase result is being ignored now by the gastric as my scans etc show no pancreatic or other organ issues..
My GP has ordered an MRI head test which also returned OK other than sinus issues.
I’ve then seen two endocrinologists and had heaps of tests. Just this last Monday I had more tests to measure adrenaline and to retest all my thyroid’s but I’m awaiting results. I next see them on 24th Dec.
I have been tested for celiac and it came back as negative. I have been strictly gluten free since July also.
My last TSH result was 5.7 (range of 0.2-4).
I was tested for everything I supplemented and it was all in the ranges.
Thank you
Were you gluten free before you had the Coeliac test? That would give a false negative.
You may not have to wait till 24 Dec for results. I would email hospital and requests all records, blood test result, scan reports everything. Pop in to Haematology with a brief letter asking for all bloods results, if that might be quicker.
You can also phone Endocrinologist's secretary and ask for last tests results over phone.
You still haven't had an Ultrasound scan of your Thyroid.
No I was eating gluten before the test.
Yeah I will probably ring to ask but there’s little I can do with the results anyway.
I haven’t and no one has suggested this either. What could this potentially show?
Might just confirm Thyroiditis. But you already have raised Thyroid Peroxidase Antibodies anyway so know you have Hashimoto's Autoimmune Thyroiditis.
Yeah, I’ll certainly ask if it’s an option when I see the endo though thank you.
I just need some help right now and feel like it’s never going to come which was why I was pondering with the idea of treating myself
Why don't you phone Endocrinologist's secretary and ask for recent results? (Also put in formal requests -brief letter or email- for copies of records).
You could ask for a phone call from Endo - say you feel too unwell to wait till 24th Dec.
Alternatively you could see GP who should be able to access results and politely insist on having your symptoms addressed.
Remember that with Hashimoto's, regular Tft results can fluctuate and fall within normal range. However, what's unusual about yours is that your TSH is high but your T4 is also high. Have they commented on your Pituitary Gland? Have you asked for diagnosis for low elastase?