Hashimoto's for 24 years and gastric dumping + most symptoms of Addison's but recently got "normal" syncathen test result what can I do??

Hi this is my first post - I have been learning a lot from this site and wonder if anyone can advise me what to do next!

The more I read the more I know something else is wrong with me - I've seen allergists, rhematologists and gastroenterologists and was surprised to find most of my symptoms are in the NHS choices description of Addison's so I asked for Endo ref.( not seen one for 22yrs) I was found to be VitD deficient 27.9 mmo/L and gp has prescribed re this. My Syncathen test result 09.50 337 and at 10.20 684 mmol/L reported as totally normal, not being seen again.

But these are my problems -

Chronic exhaustion, muscle weakness - x6 gynae surgery hysterectomy due to periods alternate weeks with crash team called out to one op as heart stopped (no more GA), lab lost one of the blood samples to establish why this happened so never found out. more recently surgeon telling me to find out why my muscles are so weak. Approx 1 or 2 days a month often when stressed - I feel flu like, have hypoglycemic type symptoms, feel sick weak cold/clammy then vomit every 30 mins approx for 12 hours plus going really hot and cold afterwards, really weak and dehydrated as I cannot even sip water without vomiting again, it isn't much fun being me this has gone on for years. More recently I am urinating frequently and thirsty and craving salty things. Family history of Thyroid problems and two male relatives with hormone probs but now deceased so cannot establish what they were. I am also left handed have an auto immune disease and have those white skin legions 3 things I have found are common in adrenal problems.

So now I wonder if this is more to do with my adrenals than dumping syndrome - I have not had my ACTH tested when the syncathen test was done. If anyone has any ideas I would love to hear from you.

13 Replies

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  • Have you ever had your B12 tested? B12 deficiency / pernicious anaemia (PA) is associated with hypothyroidism and vitiligo (the white patches). Also, you say you've had multiple surgeries. If you had nitrous oxide based anaesthesia this inactivates all the B12 in your body. A healthy person would build their stores back up through diet, but it's really bad news for someone with an undiagnosed B12 deficiency or PA. Gastritis and gastric symptoms are very common in PA, and possibly gall bladder issues. Also Coeliac Disease or Non Coeliac Gluten Sensitivity. Did the Gastro do Endoscopy / Colonscopy? A gastric auto-antibody screen?

    If you haven't already done so get copies of all your blood test results and other investigations, because we are often told they are normal when they actually are not.

    Try this symptom checker and see how you score:

    b12d.org/b12-signs-symptoms...

    And some more info here:

    b12deficiency.info/

  • Great minds think alike it seems - we posted at the same time! :)

  • Lol :-) And I meant to mention iron too, I was thinking all that blood loss, but I actually had the answer all typed out and then for some inexplicable reason closed the window and lost the lot. I was so irritated with myself typing it out again that I forgot about the iron!

    And Ivorheadache - if you do suffer from headaches/migraines as the name suggests this is also a symptom of B12 and folate deficiency.

  • Hi Ivorheadache (great name, very apt)

    Can't help you with adrenal issues though there are folks around here who are very knowledgeable and will do their best to advise. If you don't get many responses here do please repost in the questions part of the forum as it gets a lot more traffic and messages here in the posts section do unfortunately get missed sometimes.

    Looking at your history, it's clear that you've got quite a few autoimmune issues going on (including vitiligo - is that the white patches thing you mention?). And am I reading right - you had 6 surgeries? Was that 6 lots of general anesthetic? If it was ( and even if it wasn't) the symptoms you're describing, coupled with a few doses of anesthetic gas, scream vitamin B12 deficiency to me. Oh, and if you've had gynae issues, there's a good chance your iron levels are in your boots. Have you ever had your ferritin levels checked? If you're any one of ferritin, B12 or Vit D deficient, your body will find it incredibly hard to convert T4 to T3, the active version of thyroid hormone. If you're deficient in all 3 it's likely you'd feel terrible (and it sounds like you do!)

  • Thanks LilyMay yes it is vitiligo I couldn't remember the name! My surgeries have had a couple of years between each only 2 general anesthetics they will only do spinals now - they are not prepared to take the risk. I am currently on week 3 of 20,000 iu 500 mcg of vit D x3 a week for 12 weeks hoping that will improve something, and started taking B12 this week. My B12 and ferritin levels were normal but I need to get the exact result. The headaches are caused by children!

  • Hi Ivorheadache,

    I would suggest an adrenal stress test (saliva test, you need to buy it yourself unfortunately) and to look up autoimmune diets.

    x

    Katarina

  • Thanks good idea I have never looked at autoimmune diets. I was thinking of getting two saliva tests so I could do one on a normal day and a follow up when ill to compare. I don't smoke or drink alcohol so I can "treat myself" lol

  • Paleo is meant to be good! I think being gluten and dairy free is essential.

    That's an interesting idea with the tests, I wonder if the result with look worse on a day you feel bad. I would think so. Unless is takes a day or two for the adrenals to 'react'.

    But I'm just guessing here :-)

    x

    Kat

  • Please post the results later :-)

  • I'd be interested in knowing if you find out more about the gastric dumping. Pretty much whatever I read mentions gastric bypass, which doesn't apply to me. Is it an adrenal symptom?

  • Gastric dumping syndrome often occurs after gastric surgery for obesity but for those people it usually eventually stops happening - mine is iatrogenic (no known cause) which is not a common problem. It is meant to be best controlled by eating 5 smaller meals a day with other advise I received via a dietcian . This alone doesn't work for me so I have also tried various medications under the supervision of Addenbrookes. I am now on the last suggested tablets. It isn't an Adrenal symptom but I am wondering if some of my symptoms are to do with Aldosterone.

  • Could this actually be Sphincter Oddi Dysfunction

    it sounds to me like you had Endometriosis raging as a result of incorrectly diagnosed /treated hypothyroid and maybe theres still some wrapped around your intestines causing the flare ups

    certainly a hysterectomy is known to trigger hypo

    Gall bladder /sphincter oddi problems seems to go hand in hand with hypo too

  • Some people need very high levels of thyroid hormones and it is possible that you would benefit from increasing your thyroid meds, or possibly adding T3.

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