Just wondering if anybody is able to shed any light on this mystery autoimmune condition I am experiencing!
I have been suffering from severely dry eyes now for around 5 years (I'm 30) and have previously been investigated for Sjogrens syndrome. I tested positive for ANA in 2014, however it was only a very slight positive which can be normal and the Rheumatologist at the time did not feel this was enough to diagnose Sjogrens, as the only issue I was experiencing was dry eyes. My eyes had a score of below 1 on the schirmer test and this was 4 years ago, they have gotten increasingly worse and in the summer I was struggling the leave the house / work in an air conditioned environment. I use drops multiple times a day and they can be very inflamed and red.
Until 1 month ago I've always felt in very good health and had lots of of energy (apart from needing more sleep than the average person) but I experienced a very sudden onset of severe fatigue / getting exhausted at the smallest activity along with my mouth and nose becoming very dry and major brain fog. I was waking up sweating, my glands were swollen and painful and I have been getting stiff joints all over and some joint pain (in my feet and jaw). I'm needing up to 12 hours sleep on the weekend and still feeling fatigued after doing the smallest task. I sometimes have very little saliva in my mouth and my nose feels so dry and sore inside. Knowing these are all classic symptoms of Sjogrens, I went to to doctors for blood tests. My thyroid was also tested as my Dad has auto immune overactive thyroid disease, which initially started as graves disease and his mother also had rheumatoid arthritis, so there is a family link.
The test results (including TSH, ANA, rheumatoid factor, Serum C reactive protein, full blood count and ESR were all negative / normal) however the only thing that flagged up was Anti thyroid peroxidase antibodies which was a score of 13iu/ml. The doctor said anything over 6iu/ml requires 3 year monitoring to test for possible overactive thyroid issues in the future. My TSH score was 1.1.
The doctor thinks it is just depression / stress and has been very dismissive however I know this is not normal for me and have still pushed for referral to a rheumatologist, as I know there are further tests available for sjogrens.
Has anybody experienced this severe dryness at the onset of a thyroid disease or could this possibly still be sjogrens? I am still feeling so exhausted and struggling with terrible brain fog, it's making my job and life very difficult at the moment. I am desperate to feel normal again! My dad remembers having phases like this at my age (but no dryness). Any advice would be greatly appreciated
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jen7730
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Sounds like a good plan to get the blood tests done for sjogrens. Have you also asked for a referral to an eye hospital or found an opticians that can conduct a hospital grade scan on meibomian glands? You also need evaluation for quality of tears. Basically, you need thorough investigation for dry eye to find underlying cause and get the right treatment. Environmental factors and use of digital technology devices may need to be modified. There can be a variety of causes for dry eye and it may not be due to thyroid dysfunction.
Dad has auto immune overactive thyroid disease, which initially started as graves disease and his mother also had rheumatoid arthritis, so there is a family link
Your family history of thyroid and autoimmune issues points to a genetic condition known as Impaired Sensitivity to Thyroid Hormone, sometimes called Thyroid Hormone Resistance. It causes hypothyroid symptoms and requires very high Free T3 levels (often above the top of the normal range) in the body to overcome the resistance.
The two often go together as having one autoimmune disease may predispose us to others.
Conventional medicine doesn't always recognise or treat auto-immune conditions but elevated TPOAb diagnoses Hashimotos Autoimmune Disease, when your antibodies attack your thyroid gland depleting hormone until eventually replacement meds are required.
Your TSH looks fine (even though you don't supply the range) but Hashimotos antibodies may fluctuate meaning sometimes your thyroid hormones (& TSH level) will be high and sometimes low. A sjogrens diagnosis is often missed because similar to thyroid antibodies, sjogrens antibodies may fluctuate.
Eye (& mouth) dryness is common in people with hypothyroidism and if you type "dry eyes" into the search box at the top of the page, you will get many hits on similar issues.
Ask your doctor to test FT4 and FT3 for a more comprehensive thyroid function assessment. Many doctors will not/aren't allowed to test FT3 and so members use private labs - link below.
If you post any test results complete with ranges (numbers in brackets) members will comment.
I think in the UK TPO antibodies should be less than 50 but not 100% sure. Mine have been around the 600 mark for a few years now but when my TSH is tested annually it is normally within range but can fluctuate. TSH range in the NHS is 0.5 - 3.5, mine is currently 4.7 and even with the TPO and the symptoms I experience the NHS don’t treat hypothyroidism until TSH reaches 10!
You have had a lot of advice on tests and what to do next here and I would go ahead and get extra texts done but in the meantime a good ophthalmologist is a quick route into the eye clinic.
Also if you are suffering and not getting any help from the doctors you could consider going to A&E as there is always an eye specialist on call, I wouldn’t suggest any misuse of A&E but having chronic dry eye with no relief is horrendous.
I along with Graves’ disease have severe dry eyes and many bouts of SLK ( superior limbic keratone conjunctivitis)
Below are some things that I use & found helpful:
I use hylo forte eye drops during the day, multiple times.
Lacri lube at night ( although there is a problem with manafacturers atm) so alternative is Xailin night.
Vitamin A
Min drink 2 litres of water per day
Ciclosporin eye drops ( iKervis) helps take the inflammation down although these will have to be prescribed by consultant at hospital, as some severe dry eye issues will be inflammatory)
Always use sunglasses when outside
Don’t be around anyone who smokes
MGD Warm eye compress
Bleposol lotion for cleaning eye lids
Always use preservative free eye drops.
I absolutely would take to task your doctor regarding a diagnosis of depression, horrendously ignorant to suggest 5 years of dry eyes are caused through depression.
You are young Jen and having already suffered 5 years from the age of 25 I would make it your mission to get to see the best specialists and get treating and anyddress any underlying issues/tests done asap.
Yes!! Dryness was / is my main symptom. I have Hashimotos, diagnosed a year ago at age 32. My TSH was over 100, antibodies over 600 and T4 was around 6 at the time I was diagnosed. Unfortunately taking Levothyroxine and getting my bloods in range has not helped. My eyes burn and sting, drops don’t seem to help and I’ve seen a number of specialists who told me that I have blocked glands but I followed their treatment advice but it’s no better. I think they are blocked because of the dryness which causes my eyelids to swell. My nostrils are constantly dry and sore - my Gp tested for infection- negative. I put Vaseline inside to help although I’m not sure if I’m supposed to. My lips are dry and crack easily despite me constantly putting balm on them. The weird thing is I was experiencing the exact same dryness in 2015 and my thyroid test came back normal(apart from slightly raised TPO antibodies) The dryness among with constipation and menstrual problems were what I struggled with and I still don’t think I’ve got to the bottom of it because I’m no better now. I have an appointment with an endocrinologist because I want to try taking T3. I don’t really have any answers for you but I wanted you to know that someone else has the same dryness and to say keep pushing for answers- you know yourself when something is wrong.
I would swap that Vaseline for organic coconut oil. It can also be used on the lips and inside the mouth. You can often find miniature jars in the health shop (handy to carry around) and you can then refill them from a larger jar.
The dryness of the passages often leaves you prone to infections, and Sterimar nasal spray (purified sea water ~ available from chemist) is useful to keep them clean.
The dry eyes are a problem ~ I find all prescription drops useless. You will have to find the best for you by trial and error. Make sure you try the T3! 👍
Hi Jen, I’ve had Hashimotos since turn of the century which I diagnosed before Gp tests 2 years later, My first symptoms of Sjögren’s was a salty taste in my mouth followed by dry eyes then very painful feet. It was and still is an uphill struggle as now I’ve really painful stomach issues since last summer, but I use the eye spray from Wilko at £4.99 which is easier to use rather than drops but you really need to watch with air conditioning and tech screens, I was diagnosed with Sjögren’s by radio iodine with citric mouth wash which confirmed Sjögren’s although rheumatologist don’t appear to know a lot about it, just like with thyroid issues. My last annual rheumatology review I was seen by a Greek specialist who appeared to have more knowledge and acknowledge the link between both diseases as he ordered a whole range of tests. I also have had a plug inserted to reduce the loss of tears which made a big difference. I could go on forever but if you need to feel free to PM me.
I'm with Graves Disease, post RAI in 2005 and now 72.
I too have experienced very dry burning eyes, nose and mouth, and found no help.
My dentist ultimately suggested Sjogrens on which I was referred to rheumatology.
" Exhaustive blood tests " and a lip biopsy proved negative, but I did have a low ferritin !
Your dad has Graves, it's an autoimmune disease, it's for life, it's in his blood, and in his DNA. What was his treatment after diagnosis and how's he doing now ?
It would seem obvious that there are some cross overs with all these auto immunes.
It's about managing the antibodies, that attack the body, in so many insidious ways.
There is the British Sjogrens Syndrome Association website and charity where I found much of my information.
Obviously, with your family history, there might be a genetic predisposition to thyroid disorders, and guess you'll need to monitor all symptoms until blood tests give the definitive answers on which conventional doctors are instructed to act upon.
Sadly autoimmune diseases do not seem to be well understood or managed by the mainstream Nhs - and it seems up to us to do the research and become our own best advocates.
From experience, please only use preservative free eye products.
I have Sjögrens and hashis, so I know how difficult it is to work out which is causing the problem. You are clearly feeling rubbish...so keep trying to get them to find the problem. Perhaps change doctors and start again? It doesn’t sound as if you’ve been very well advised. I was diagnosed with hypothyroid first and just put on some levothyroxine. It made me feel worse and all of the pain, horrible fatigue and dryness became more severe. I went to a private endo who did lots of specific antibody blood tests. I think Sjögrens is anti Ro. I then saw a rheumatologist with did a sjirmer test and have had a lip biopsy (it will tell for sure). There are lots of things to help with dry eyes. No preservative drops etc. I use hylo tears. Even though on my last sjirmer test I had 0mm of liquid in one of my eyes over 5 mins..I find the thicker drops or gels aggravate. If you use drops and then get a microwave heat pad on your eyes for 5 mins, it’s a huge relief. Do that several times s day. There are various meds for Sjögrens and a good rheumy will help.
In terms of thyroid, it seems to be much more difficult for some of us to get help. Lots of gps simply don’t understand and look only at TSH and not at symptoms. Try to find one who will listen to your symptoms and regularly monitor medication.
Sorry, I think I’ve rambled on a bit (a lot), but you need to find out what’s going on and feel better. Good luck and please message me if you have any questions.
The terribly dry eyes were the first thing that happened to me as my thyroid was going hypo.
Then the last couple of years they got worse again, and I finally got prescribed Restatis (cyclosporine) which helped a lot, but my next refill was going to be $$$$.
Discovered I may have trouble converting beta-carotene (carrots etc.) to retinol - Vitamin A. I've always been leery of Vitamin A supplements because it is fat soluable & the doses all seem to be so high, but I take 10,000 IU twice a week to help supplement the foods, and it has really helped the dry eyes, I hardly use the Restasis.
Thyroid issues normally don’t cause lymph node enlargement. If the doctor is dismissive, get a new doctor. Night sweats, low energy levels, enlarged lymph nodes for me was the result of Chronic Lymphocytic Leukemia. I had those and then found out I had CLL after that. Push for tests
Thanks for all your replies. I am going to get a full thyroid profile done privately. I think going private may be the only way as the doctors I see don't really seem to have a clue, I had a list of symptoms a page long which were dismissed as anxiety. A few things I thought were relevant are that I have an enlarged tongue, I grind my teeth in the night and I sometimes get the strange feeling of a lump in my throat and can't swallow unless I "click" the cartridge in my neck back into place. There are no visible lumps and I'm also very slim and don't gain weight which the doctor said I would if I had a thyroid issue. I also developed vitiligo around 5 years ago at the same time my eyes started to get dry. It's only a mild case, but I believe it can also be linked to thyroid issues...
Yes I have both and what you really need to know is that 25-30% of Sjögren’s sufferers are seronegative - which means anti RO antibody negative. I have positive ANA and have been treated for Hashimoto’s for years - also previously (mis)diagnosed with RA.
So finally I agreed to have a lip biopsy having been told that it was just secondary Sjögren’s or sicca syndrome previously. My symptoms pointed to (and still do) to MS so I’d also had a brain MRI and lumbar puncture - both showing signs of a systemic process occurring. But no swollen glands or particularly dry mouth so they kept telling me not Sjögren’s. My lip biopsy was 100% definitive of Sjögren’s. It’s still classed as seronegative.
This seronegative subset is often misdiagnosed as ME or even as MS as they are so alike. So I’d be demanding blood tests from your GP - but even if these are antibody negative for Sjögren’s it doesn’t mean you don’t have it.
To me it sounds very much like you do and you may well produce TPO as well as anti Ro antibodies as the two often overlap and your Sjögren’s may be attacking your thyroid - but not yet showing up as full blown Hypothyroidism.
I suggest you enlist the support of your optometrist or ophthalmologist or both! Best of luck!🤞🏽
I'm so sorry your having to deal with this . Do you have your latest FT3 FT4 TSH values ? From personal experiences when I'm not *Optimally* dosed I get many hypo symptoms one of them is swollen salivary gland that causes dry mouth dry eyes UTI . Aches/pain joint/muscles insomnia sweating weight issues palpitations BP insomnia . This can happen with hyper symptoms too . Some symptoms can over lap .
Nutrients are very important to make our thyroid meds work well for us too . Vitamin "D" /K2 , B-Complex , B-12/folate , Iron if you test low , Magnesium , Vitamin "C" , fish oil , Celtic Sea Salt for Electrolytes /Adrenals .
In addition . Dry mouth can be from T3 and T4 it can work as diuretic and you will need to replace it with drinking plenty water with some Celtic Sea Salt to replace the electrolytes .
Unfortunately my FT3 FT4 were not tested. My TSH was 1.1 and the range for this was 0.4-4.9 so it was "normal". I've going to get some private tests done which will include these. I have also suffered from insomnia/racing mind for as long as I can remember. Sometimes I have irritable spells and get angry very easily, which is not my normal character. My blood pressure is usually low but I often experience light headiness when standing.
It's possible besides having your FT3 FT4 values tested you might want to ask for adrenal/Cortisol via saliva tested . DHEA-S is with BW . Adrenals and Thyroid meds work in *Unisom* .
Wishing you Wellness and satisfactory resolutions .
HI J Don't take this as medical gospel since my memory is hazy, and my expertise very limited. It's more a of a story....
It may not relate to your situation at all, but it's potentially relevant based on my own experience.
The essential point from this experience is the possibility (or even likelihood) that whether Sjojren's or thyroid the underlying causes may be very similar.
It isn't to say to not get tested - to check for those conditions which mainstream medicine can identify, but it's possible (also from experience) that this sort of testing may not provide definitive results. (or at least not deliver clarity on what's really going on) For some of the sorts of reasons outlined below.
There's a well recognised broad holistic approach to the frequently underlying causes of immune disturbance (if it hasn't progressed too far) which I've had good luck with - in addition to drawing on mainstream medicine where/when it could help.
Pardon the length.
Following a very tough few years at work I found myself going down the sinus/nasal, fatigue, immune reactions and eventually severe hypothyroidism route through the 90s and early 2000 - culminating in a thyroidectomy for a thyroid cancer and a pathologist's diagnosis based on microscopic examination of the removed organ of cancer and advanced auto immune thyroid disease.
None of these conditions were diagnosed in advance of a crisis (attacks of life threateningly high blood pressure) 15 years later - despite repeated testing by several doctors and consultants.
It cost me my career, and a very bumpy 20 years - and was very nearly terminal.
My experience was that repeated testing for more general (scratch tests etc) and specifically for thyroid auto immune disease came up negative all the way. As did testing for gluten intolerance, adrenal function, and lots more.
I too registered a positive ANA titre, and had many of the symptoms of lupus or Sjojrens - but my GP refused to act because I wasn't positive on all x3 (?) indicators for the condition. Which was daft, because for sure I was showing obvious symptoms of immune disturbance - especially gut troubles, a bout of what was likely Parsonage Turner syndrome, and heavy duty immune reactions to certain foods.
I figured it out after a few years and a lot of reading (information was much less readily available in the early/mid 90s), and knew I had autoimmune and likely secondary hypothyroidism for the better part of the 10 yrs before a crisis eventually developed.
I'm simply couldn't get a diagnosis or get treatment during this period despite briefing GPs and consultants with papers listing symptoms and the nature of the condition.
Symptoms reported by patients in these times of 'scientific' (ha!), cost/commerce and legally driven medicine are it seems often ignored, and/or are not recognised by most doctors - while physical examinations are pretty rare.
The point I guess is that non-diagnosis of problems, and even assurances of 'normality' don't necessarily means that you're not developing some problems - as I certainly was during this time.
The core issues in most of these scenarios are often strikingly similar. Bear in mind though that the following are only pointers for further reading.
Stress, the gut inflammation and hypothesised eventual micro leakage which follows the consequently chronically raised (but still deemed normal by most available tests) cortisol levels (raised cortisol is meant only to be a short term fight or flight response, it results in curtailed digestion, and if longer term can cause many problems including gut inflammation, thyroid down regulation and high blood sugar etc) with a less than ideal diet (especially if heavily wheat based, and incorporating other especially processed foods heavy on additives, gluten, milk/lactose, sugar and agri-chemical residues) lead to chronic immune disturbance, likely imbalances in gut flora, reduced mineral and nutrient uptake, development of food sensitivities, and eventually perhaps to the possibility of what gets called adrenal exhaustion/inability to produce enough cortisol (which may actually be down to immune induced problems in subtle enzyme processes involved in control of and use of especially thyroid and adrenal hormones), and to the immune system attacking organs. (the thyroid is often early on the list)
Auto immune attack on the thyroid can result in both an over activity (hyperthyroidism), under activity (primary hypothyroidism), and in inability to use thyroid hormone properly. (see below on secondary hypothyroidism)
It's worth noting that the symptoms the patient experiences from especially early hyperthyroidism can be quite similar to those of hypothyroidism.
Genetic/inherited predispositions (which may well include lifestyles, fractious mind states, dietary habits and the like), and toxicities (especially metals, with mercury from tooth fillings and fluoride from water directly messing with thyroid metabolism) seem to make the difference between us canaries, and those that plough on unaffected despite their abusing the body in every way imaginable.
The latter may well mind you be a misperception that holds only in the short to medium term, in that most of the diseases that kill us humans these days seem to have auto-immune underpinnings.
The situation is by all accounts reversible if it's addressed before significant organ (eg thyroid or neurological) damage occurs, or an auto immune disease condition becomes firmly established.
It's not easily done however in many cases, in that it requires considerable patient commitment, and is very holistic in nature.
There's little about by way of instant fixes it seems.
The classic approach seeks to achieve gut healing, and the restoration of calm in the immune system - and entails use of an elimination diet to ID and permit elimination of problem foods (with the above high on the list of candidates) as a part of what is often referred to as a 4Rs programme. (rest/replace/repair/restore)
Antihistamine (I use Piriton) used in problem situations (eg having eaten a wrong food) can help reduce gut responses (which in my experience is another driver of high cortisol levels), I also have had good luck with taking low dose naltrexone as an immune calming measure. (it reduces nasal inflammation too which messes with my breathing at times)
There's lots of other factors that need consideration.
Calming the mind through meditation and work/lifestyle changes in outlook can be central.
Depression is frequently diagnosed in those with hypothyroidism. It's certainly true that the associated brain fog and suffering reduces the mood (the brain needs adequate supplies of T3), but it's not of mental origin.
Regular, adequate and restful sleep is enormously important - and is easily disturbed by stress, late nights, late night bright lights and/or computer use, disturbance, shift work, sleep apnoea etc.
The latter can be a central driver of the whole fatigue/metabolic problems deal, and not just because of sleep loss - it's not unusual for sufferers to experience 30+ apnoeas/hr, and every time it happens the adrenals release a shot of cortisol into the blood to get the person breathing again. The result can be chronically raised night time cortisol, and all that entails for rest and for the digestion, and for the rest of the body.
The situation is probably improving, but my own experience suggests that few doctors apart from specialists truly consider sleep apnoea as a cause of health issues. There's lots of research they know about which identifies longer term consequences, but the seemingly limited recognition of the risks of relatively low levels of raised cortisol means that the short term effects are perhaps less widely known.
Life changes to end problematical and stress causing relationships and employments may be advisable, as may be more reasonable and more stable working hours. Also avoidance of trying to work hard and play hard at the same time.
Iodine supplementation can be helpful, but requires care.
Treatment to reduce bodily levels of mercury, aluminium etc can also be helpful. There are moderate treatments, but chelation therapy (if required) needs expert medical supervision and isn't risk free.
Some seem to produce immune responses to electromagnetic radiation, with phone masts, wi-fi etc on the suspect list.
A holistic programme of the above sort above may over a few years result in recovery, but if the situation is more advanced then bodily systems may be affected to the point where it's not enough.
It all gets more complicated then, as the optimum approach become dependent on what organs and systems are involved. My thyroid function was affected as described, but this may not always be the case.
My experience was of several years of 'tiredness' while still functioning pretty normally - but of struggling to get enough rest/waking up tired all of the time. Then of a sudden and radical drop into chronic fatigue/inability to work when I think my secondary hypothyroidism became more serious.
Then 15 years of trekking around doctors to no great benefit.
It's I feel important to understand a few things about mainstream medical tests and approaches in this field.
The stock T4/TSH test won't identify secondary hypothyroidism. That's when the thyroid is producing enough hormone to maintain normal blood levels, but it isn't properly being used downstream for reasons such as problems in conversion (pretty common in those with auto immune disturbances it seems), toxicities etc.
This can and does produce severe hypothyroidism (with all of the normal symptoms present), but some doctors will still in the event of a negative result from standard thyroid blood testing assure one of thyroid normality. (yes, the gland may well be producing enough hormone, but....)
Primary hypothyroidism (where the gland simply isn't producing enough hormone) is typically down to advanced disease conditions, or dietary deficiencies - this (or overproduction of thyroid hormone/hyperthyroidism) is what the stock test normally detects.
There's (according to my endocrinologist last year) no definitive test available that IDs secondary hypothyroidism. The condition may result in low T3, but this isn't always tested for now - and anyway (as in my case) can even if normally low in the supposedly 'normal' range only occasionally drop out of it.
A trial with T3 will often show up secondary hypothyroidism/a problem with conversion (not necessarily however a (seemingly fairly rare) problem further downstream again), but almost all doctors and consultants are very reluctant to run one. Perhaps because to do so without a clear test result risks professional censure.
There are suggestions about that the medically determined 'normal' ranges for thyroid hormones leave quite a few feeling unwell anyway - one size may not always fit all.
It took several months of struggle and a bout of severe hypothyroidism, but persuading a consultant to trial some T3 post thyroidectomy restored normal brain function, got rid of the other hypothyroid symptoms and transformed my life. It with the 4Rs approach (lots out there on this via a search engine) restored relative normality. (with some legacy issues like susceptibility to stress, tendency to fatigue if I overdo it, and some dietary restrictions)
They likewise seem reluctant to make a diagnosis (or in some cases unable) to make a diagnosis based on symptoms. If nothing else it's time consuming and uncertain to do so, and resolution of any condition anyway likely requires a lot of patient commitment and/or the prescription of hormone as above.
T4 alone seems to leave quite a few with secondary hypothyroidism that requires some T3 to resolve - and consequently struggling with fatigue and many of the usual hypo symptoms. This because their impaired conversion means they can't make enough T3 from the T4 given. That was certainly my experience anyway.
There's often a reluctance on the part of public health providers to prescribe T3 as it's more costly and complex to monitor, and can rapidly cause problems if wrongly used.
Testing for auto immune thyroid conditions may based on my experience not be so reliable either - or perhaps the antibody levels required for a positive result are very high.
Blood cortisol testing may also be problematical. The stock blood tests will in extreme cases identify conditions like Cushing's or Addison's diseases, but the levels are naturally so variable in response to events throughout the day that medicine seems to avoid making a diagnosis in more moderate (but still very significant based on my experience) situations.
A more effective test would likely require continuous monitoring of blood cortisol levels over an extended period to identify these more moderate but still significant scenarios.
An adrenal profile can be done which will provide spot results through the day and/or night, TUK had an arrangement a few years ago which made it possible for members to get this done in a private lab. This is a definite improvement on a single reading - but probably still somewhat limited.
The identification of high night time cortisol by this means may well be indicative of other possibilities, but it could also point to sleep apnoea. (as seemingly in my own case) It's not necessarily a given however that a 'normal' result excludes it either.
Sleep testing (by a sleep apnoea specialising consultant or doctor) does seem however to be pretty definitive in identifying it.
There's clear technical/commercial/bureaucratic reasons why the situation is as above, but the difficulty which follows is the likelihood that many who are on the road to developing chronic fatigue and/or similar metabolic conditions are left undiagnosed (i was anyway), and hence untreated - when the situation if nipped in the bud as described above might well have been treatable by moderate means...
Anyway. Good luck with your situation. The key enabler of progress in these situations (barring falling in with a thyroid friendly and very expert doctor) seems to be committed self work, rationality/open mindedness and self belief.
As in study the subject like mad (even if you are knackered), cautiously and rationally try what makes sense, and learn to listen to what the body is telling you.
Don't let anybody tell you otherwise in the case of the latter, if you're not well you're not well. The question is why...
Thanks so much for your reply. This is really interesting.
I am looking a lot into diet changed, I have already cut out gluten, most sugars and dairy and processed food. It's quite hard to know what are the right / wrong things to eat as there seem to be so many different "protocols" out there with conflicting ideas. I try and read a lot about what has helped people specifically - one being a plant based diet, however I would struggle with this as I need to keep weight on as I'm already only just within a healthy body fat range. There's a lot to think about, but I'm determined to find out what is wrong and what I can do about it!
What a pleasure to read such a well written and informative reply. Many echoes of my own history and research to date. Sometimes my self belief slips a bit in the face of complete lack of understanding from GP after GP, Consultant after Consultant, and bemusement of (some) friends and family, so positive reinforcement from the wonderful people on here is both needed and appreciated. I shall continue to study, sift and listen to my body. Best wishes to you.
Hi Jen, I’m no expert but have you been checked for fibromyalgia? It sounds like you have so many of the symptoms. I’ve heard not everyone gets the really dry eyes but it can be a symptom along with chronic fatigue, aches and pains in joints and particular areas like neck, jaw, shoulders, hips... dry mouth and more I’m aftaid. Hope you can get some answers.
'Daft question. How much water - 'water' - not tea, coffee, wine but 'water' are you drinking. Depending on your body weight (and I have Hashimoto's) it should be something like 2 fl. oz per pound. See Haylie Pomeroy (Fast Metabolism diet). I mention it because I am so dreadful at drinking enough. I weigh 210 pounds at the moment so should be drinking half a pint of spring water (not tap or filtered) every hour. Some chance of remembering that! But when I do brain fog lifts, headaches go, joints don't ache as much etc. I'm on 75 mcg T4 and 25mcg split into 2 doses per day.
I have always tried to drink plenty of water. 1 large glass when I wake up, 2 at work during the day and then maybe a couple of night. I had by body hydration checked a couple of years ago, which was fine but I may try drinking more. Thank you
Hi Jen. I can't add much more, but as above the classic approach to determining problem foods is the elimination diet.
There's holistic practitioners out there offering them, or there's books which would set up the DIY option.
My sense is that DIY with good reference material is ultimately the best given the complexity of the whole deal, and the importance that we take control of our diet, and get switched on to what the body is telling us.
There's a few considerations to bear in mind:
1. Mainstream testing can be very useful, but often is misleading/not of much help - for the sorts of reasons I've outlined above.
It's a case of walking between the raindrops...
2. Most of the conditions discussed mutually reinforce each other. So for example secondary hypothyroidism leaves pretty much every bodily function messed up - because T3 regulates everyday metabolic rates and processes.
Not only that - the enzyme process that converts T4 to T3 needs T3 to function. So that if we get really low on T3 taking T4 alone often doesn't work. We need T3 - a bit like needing to charge the flat battery on a car so that the engine can be started and the alternator can take over the charging duties.
You may or may not be hypo or hyperthyroid, but my experience once my immune system was significantly/chronically disturbed was that until I was on T3 and hence properly replaced that nothing I tried made much difference.
3. As above the only easily accessible means I'm aware of short of symptoms to identify secondary hypothyroidism caused by conversion problems is a trial with T3 - but this would not be the way to go if you were already hyperthyroid. ie if showing a low/out of range TSH.
4. Don't underestimate how precisely an elimination diet needs to be set up/how much trial and error is required to truly eliminate problem foods. Just reducing the intake of them is not enough when there's an immune response involved, even traces can cause significant reactions.
There are so many possible problem foods out there.
There's normally OK stuff that most are fine with, but which we may have developed a sensitivity to (eg i do great with potatoes, but some react to them); there's stuff that's organic or natural in name only, and there's processed stuff that might seem fine but isn't. eg processed meats and baked goods often use glutaminase to bond bits together to create the sort of fake ham seen so often these days - the stuff is with other additives, glyphosate and other agrichemicals increasingly suspected of producing gluten intolerance like symptoms.
Glyphosate is in blanket use these days on so many staple crops just before harvest- crops manipulated in this way reportedly include wheat, maize, cereals, oilseed rape, legumes including lentils and soybeans, sunflower, and potatoes. It's so hard to avoid it and other agrichemicals.
5. Likewise don't underestimate how long it can take for a significantly and chronically disturbed immune system to calm down - and to learn to read the signs, and to find stuff that helps.
It becomes a journey, my experience has been that I've more or less been guided to all my breakthroughs by synchronistic means.
My built in immediate indicator that my system is acting up is my tinnitus - it gets louder and more frequent as my blood pressure changes in response to increasing cortisol levels in response to immune disturbance.
I've seen improvements in steps over the 14 years since I started on T3, and am still learning to manage the situation.
Elimination of flour and especially of all processed and factory baked goods and confectionery (we eat a home baked porridge bread from organic oats and spelt, we also make a DIY muesli, and use organic linseeds for the gut protection the oil provides), sugar, milk, removal of tooth fillings with mercury then chelation therapy, stopping drinking fluoridated mains water (but lots of good water), meditation, lifestyle changes to avoid high pressure work situations and get lots of rest and sleep (pacing work to how I feel, and not vice versa), exercise, Piriton when I've eaten something I didn't ought to, CPAP for the sleep apnoea, and low dose naltrexone have all produced significant improvements.
I get away with minor transgressions now, but would end up very ill in a week or two with high blood pressure.
Immune responses result in raised blood cortisol in my case judging by the symptoms, but that may be down to some regulatory funnies/HPA axis control and thyroid process issues consequential to a very premature birth.
6. Certain meds have the potential to be problematical. Beta blockers (quite apart from recent research asking hard questions as to whether they and statins for cholesterol deliver benefit) can in my experience exacerbate hypothyroid effects fatigue big time, as can steroids.
NSA anti-inflammatories are hard on the gut too.
Antibiotics can be highly disruptive to gut flora and function - a long course of a strong antibiotic way back when seems very likely to have been what messed my gut up badly enough to tip me into auto immune problems....
I have all of the above symptoms you're describing. I was diagnosed having Hashimoto's disease. It's been in remission for a long time as long as I stick to my anti inflammatory diet and avoid stressors. These are triggers for any autoimmune disorder. I also had testing done by a NTP (nutrition therapy practitioner) she discovered that I lack certain minerals that aid in digestion. One being HCL, and as soon as I supplemented my eye felt better, mouth and other mucus membranes weren't dry anymore. Apple Cider vinegar helps too. I experience dry eye of the left eye only when I forget to take my supplements or run out.
I often wonder if it's Lupus that I have though because it attacks infrequently even when my thyroid levels are fine.
There are many other things I do to avoid major fatigue also, because I do understand how bad it feels not to be able to accomplish anything in a full day or keep up with my family. Others just don't get it because we appear fine on the outside however, the brain fog can be debilitating! Stay away from gluten, and sugar, that's what causes it because it makes your blood thicker and sticky so it can't travel all the way through to your tiny vessels of the brain and other areas like your eyes. I'm happy to share more as I've been researching and experimenting for my own cure. Docs told me I was just depressed too, but none of the antidepressants ever worked or helped me. I had to help myself through knowledge and education, exercise, and diet but it's all been worth it!!
PTSD after a car wreck held me back too for a while during recovery, but I was able to overcome the fatigue again after three years. It's a life long battle, just pace yourself and try not to over do it when you do have bursts of energy, otherwise you may end up setting yourself back a couple days. Slow & steady wins the race! Eventually you'll get it into remission and live a normal active healthy life again everyday!
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Mild Sjogrens? Is that a thing? 
Normal labs , Normal antibodies but uptake thyroid scan was elevated 
