This is one of those really vague questions that no-one can fully answer because I don’t have all the right information / test results yet but please help me out if you can …
I am midway through investigations for Sjögren’s.
I am having all the classic Sjögren’s symptoms of extreme dry mouth (and with it gum recession), sometimes sore eyes and bumps in the back of my neck. Also, extreme forgetfulness.
I’m also having more frequent bowel motions and stomach pains. I can drink 20 glasses of water a day (to keep my mouth less than arid) and not pee any more than I did before, which is also weird. My glucose levels are normal, however.
I’m also having itchiness in the abdomen and in the back of the head / bottom of the skull, where it joins the spine.
I’ve recently had some blood tests done at the GP’s request and my GP’s secretary called me today to say that one of my liver results is off: too high. They didn’t say which or by how much. The GP can’t speak to me until next Wednesday, leaving me with lots of questions and no answers / real intel / test results.
Sjögren’s can cause liver problems. And, vice versa, liver problems can cause dry mouth. So I’m trying to figure out what liver tests I would need to have done (blood test or otherwise). I am already due to have a lip biopsy, for Sjögren’s, next week.
Can anyone please outline the basic liver / bile duct diagnostic route?
I am also wondering whether liver problems are a feature of the lives of many people with thyroid problems? I am not a big drinker.
Apologies for such a vague question. I am trying to arm myself for a call with my GP. I find that once you have more than 3 symptoms the less good ones switch off, so would just like some help narrowing down the diagnostic course of action. I know that whatever you tell me here is not medical advice as such.
Thank you
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I have had two GPs who do liver function tests along with annual thyroid tests.
Afraid I really have not gone much further as mine have all been fine. But there definitely can be associations between thyroid disorder and liver issues.
I think we also see more than expected number of members who have had gall bladder surgery.
At times like this I feel I would be better off seeing a) a GP in person to feel lymph nodes and lumps and needs, and then b) for the GP to feed their notes into a computer algorithm that tracks data and considers both things that are likely and obvious to look for, and also unusual but still important to look for and rule out. It’s that considered picture that I’m not seeing.
I've been having some gut problems for a few months. To cut a long story short..........I spoke to my GP, he suggested bloods this week (which most are back & good) & a referral to Gastro...........My response was that I expected the referral to take a long time & that I'd like to be prodded like they used to do, before they considered ordering bloods and making referrals. I understand where you are coming from.
I've got a 7 min f2f appointment next wk. I guess I'll have to dash in, hop on the couch, and dash out again. I think that if you want to be seen in person, then you've got to say so.
I've had a couple of health problems over the past 18months, but this will be the 1st f2f appt. Usually they are by text, plus I've had a couple of 0.50sec 'conversations' too.
I ask for the same GP each time now, purely because he is aware of my history
The new mantra of “what is your main symptom?” we are asked on 111 is troubling.
There are so many conditions and illnesses where diagnosis isn’t made on the basis of one symptom only, and we as patients don’t know which symptoms are most “important” to doctors / paramedics.
"The new mantra of “what is your main symptom? we are asked on 111 is troubling."
It's bonkers. I had the same thing in A&E last year, and they sent me home after a head CT. They completely ignored what I kept trying to tell them about my stomach. It turned out that I had acute kidney injury, which I think they should have considered but they didn't, and they should not have sent me home.
Make sure that they numb you for the biopsy. I had a punch biopsy done on a bit of basal cell on my ribs a few years ago. The clinician looked at the obviously sore spot & said "Oh, we don't need to numb that". Horrible woman looked really sadistic too. It was surreal........like she really hated me...........but I'd never met her before. I wouldn't ever let them do that again, it hurt like hell.
It’s nuts! And obviously the route to worse health outcomes. It seems such an inefficient use of limited resources because it will lead to patients having to come back time and again, until someone finally listens to all their symptoms.
My liver issues began after my thyroidectomy. I now have NASH. Since December I’ve been having major auto immune symptoms such as itching, arthritis, blood sugar issues and tooth pain. My AST is four points higher than my ALT although they are considered in the “normal” range. I’ve previously had a lot of gut issues.
Leil, what tests have you had so far to rule things in / out? I’ve had the ANA and some other AI blood tests. And am due to have a lip biopsy for Sjögren’s… it feels as if it’s all glacial but some people have even slower diagnostics, I know.
Thank you, LeiL. Good to know. I’ve seen a gastro doc before but at that time didn’t have any weird liver numbers. So your liver biopsy pointed the way to NASH. Liver biopsy - just the sound of it is painful.
I had raised liver results after a heart attack in 2012. I was sent for an ultrasound , and there is a lesion which doesn't cause any problems that I'm aware of. It took 3 years for levels to return to range. Again in 2018 (maybe coeliac inflammation.......don't know) which I only found out about when I got access to my records. I think there are so many things that can do this.
The liver metabolise/converts a large percentage of our T4-T3 hormones through glucoronidation, and detoxes through sulfation filtering toxins & cleansing the blood. It makes transporting proteins that bind & carry thyroid hormone around the body.
Thyroid hormones influence liver function and bilirubin metabolism, with hyperthyroidism matching activity to high levels of thyroid hormone and hypothyroidism slowing liver activity.
The slowing effects the livers metabolisation & excretion of cholesterol & triglycerides raising levels. High cholesterol is also caused by a slowing down of the gall bladder which metabolises liver byproducts with bile flow.
The bile becomes thick, unable to emulsify fats and it is this buildup that leads to gall bladder issues and gallstones commonly seen in hypo people. Bile also stimulates flow through the stomach helping to absorb and eliminate foods. It also serves as the route of excretion for bilirubin.
Food has to be broken down into things like amino acids (proteins), fatty acids & cholesterol (fats), & simple sugars (carbs), as well as vits/mins and it is bile and pancreatic enzymes (amylase, protease, and lipase) that are a large part of this process. Inadequate bile/lipase can lead to deficiencies in fat-soluble vitamins (Vit A, E, K, D).
Biliary issues/obstruction are likely with more elevated ALP (alkaline phosphatase) labs, in contrast to ALT, AST, albumin and bilirubin. Many articles associate elevated liver enzymes more to hyperthyroidism but they are common on the forum in members who are hypo too. I have Hashi and had raised liver enzymes just before diagnosis.
Pruritus can be due to raised bile salts and histamine but I don't think antihistamines are useful. It's more about addressing the root cause of poor liver function and detoxing with clean foods, Vit E (mixed tocopherols) and I like milk thistle but it can interfere with thyroid meds in some people.
Sjogren’s has implications on the liver but also other organs, joints and tissues. Just like Hashimotos, conventional medicine will only treat the resulting symptoms with eye drops, anti-inflammatories, etc, and not the root cause. So like Hashimotos it’s a case of trying to reduce antibodies to eliminate inflammation by removing any known triggers, eating an anti-inflammatory diet and supplementing to calm an over-active immune system, ie Vit D, Vit C, fish oils, etc.
Symptoms can become mixed. I don't have Sjogrens but do have a constant thirst which I always attribute to longstanding adrenals issues. I have also had that thing where I drink gallons & gallons but it disappears, never encouraging more frequent weeing. My doctor once told me off for drinking so much. I think I was doing a cortisol or iodine 24 hour collection and I had to pop back for further containers twice! 🤣 . I also take Betaine HCL, digestive enzymes and have previously needed ox bile for proper food digestion.
I read a lot! 😬. My knowledge only really extends to conditions applicable to myself, and I’ve only started retaining information for any time since adding T3 to meds in 2016.
Adrenals - blood serum results have always been low but never acted upon by conventional medicine.
I am very ignorant and foggy of brain so please speak even more slowly and carefully. When you say your adrenals were tested, how were they tested? Blood serum alone, scan, other?
Our levels of cortisol hold great influence on not only how our thyroid meds work but also for balanced blood sugar, a strong immune system, reducing high levels of inflammation, regulated BP, etc. Aldosterone is the salt-retaining hormone that also influences BP and electrolytes. I have had under-range results of both at various times in my life.
Some people have actual problems with either the adrenal gland itself, or the pituitary or hypothalamus that drive the adrenal glands, but others like myself just have worn out adrenal reserve. My journey is no different to many other members who suspect their Hashi condition started as a child not to be diagnosed until 20, 30, 40 years later, and when during that time the adrenals prop up inadequate thyroid hormone levels until eventually the adrenals own reserves become inadequate also.
I almost got a hospital referral once when 9am cortisol level went under-range, but when levels were retested it had improved just scraping through range. And then as GP felt that area had been investigated it was never revisited for years, and so I was never offered a stim test or corticosteroids to help my low levels and had no knowledge of what to ask for.
Over the years I’ve had repeated serum blood tests and several 24 hour urine collections by conventional medicine, two saliva stress tests for Dr Peatfield and two DUTCH (dried urine) for a functional endo.
However, the adrenals are robust and will bounce back with the right supports/conditions and mine did, evidenced by higher blood serum levels several months after adding T3 to my thyroid meds. Stamina initially improved but has deteriorated since my stroke and constant thirst, and weird sticky saliva continues.
You - I read your bio here earlier - and I have a similarly dry mouth and constant thirst. Have you ever had a lip biopsy done to check for Sjögren’s?
My son has at times - since 18 months old - had a high but subclinically so TSH result. When he started on a GF diet at nearly 5 years old that TSH figure dropped to lower than it had been for the preceding 2-3 years, but I also wonder whether he will develop full blown Hashi’s as he gets older. Interestingly I recently checked an old blood result of mine when I was pregnant with him, pre Hashimoto. My TSH was over 6. That TSH level wasn’t treated or even monitored during my pregnancy. I wonder whether he inherited it from me, and whether doctors could have prevented both my getting Hashi’s and his going on to develop Hashi’s, had they properly monitored me for it. The things you only know once you have this confounded condition!
I had extensive investigations at Guys Hospital in 2016 but nothing apparent. Ultrasound scan on submandibular & parotid salivary glands normal, ENA’s, ANA’s , Rg factor & pages of other labs re autoimmune stuff all negative except Hashi. I was diagnosed with oral dysesthesia, temporomandibular disorder with scan showing atrophied thyroid gland and absolutely no evidence of Sjogrens Syndrome. Then I was offered AD’s and CBT! 😳 so I stopped chasing.
I tend to think my issue is hormonal/gut/some sort of genetic excretion impairment but I don’t know where to go next because I just don’t present as a typical Sjogrens candidate, ie dry eyes/nose/mouth/mucus membranes issues, or joint pain. My problem is sticky/glue-like saliva altering taste & mouth sensations but my mouth is not dry. Therefore, I don’t want a lip biopsy.
I'm sorry to hear about your son. I have read of thyroid antibodies crossing the placenta & my youngest son (now grown up) has tested positive for Hashi. He is controlling Ab's by diet/eliminating triggers at present, & reading my vast amount of books 🤣. Most studies on the effect of elevated thyroid antibodies in pregnancy all appear fairly old, probably because not a lot outside of functional medicine has evolved in the management of thyroid autoimmune disease but the research is starting to filter through.
If you read books such as "Your Healthy Pregnancy With Thyroid Disease" by Dana Trentini and Mary Shomon, and view articles by ‘hypothyroidmom’ the general consensus is to keep antibodies low throughout pregnancy through means such as eliminating cross-reactive foods, avoiding sugar spikes, supplementing selenium, fish oils, Vit D etc, that helps calm an over active immune response, so reducing the chance of attacks on thyroid peroxidase (TPO) & thyroglobulin (TG).
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Maternal thyroid peroxidase antibodies during pregnancy: a marker of impaired child development? (1995)
This link isn't directly connected but really interesting about a baby born with a TSH of 117 mclU/mL after the mothers undiagnosed TRAb’s blocked circulating TSH hormone from stimulating the baby’s own thyroid gland in the womb. The mothers antibodies didn’t cause the baby's thyroid gland shrivelling because they didn’t directly belong to baby, ie they were borrowed/second-hand auto-antibodies that didn’t operate directly against baby’s own self.
Thank you for all this information, which is all so pertinent to my own situation.
Doctors say I don’t have a dry mouth in the extreme either because I still produce some saliva, too. But whatever is going on is really affecting my teeth and gums. Do you have that too?
Actually I remember my gums felt spongy in the beginning accompanied with a metallic taste. This was around 2015 when I first started medicating Levothyroxine. I became convinced it was the Levothyroxine but have since switched to NDT and my issues are no better, although my gums are fine now.
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