suggestions please

[lesbud1]

does anyone else get a sore, swollen tongue and really dry eyes? I have tried taking a fluconazole. so not thrush and have used all sorts of eye drops but still get very dry. is it thyroid related or menopause or something else?

[greygoose]

Could be thyroid related, or could be B12 deficiency. Have you had that tested?

[lesbud1 in reply to greygoose]

I have b12 def but have injections every 8 weeks and take a b complex vitamin. last blood test my active b12 was high.

[greygoose in reply to lesbud1]

That's good. How are your other nutrients: vit D and ferritin?

[lesbud1 in reply to greygoose]

vit d was in my boots and so was iron but have been taking vit d and now started iron as been very tired lately. I need to have my levels done again as been on the vit d for several months now. will get medicheck done and post. just wondered if people had any suggestions to help the eyes as well? I know you and others have mentioned a gluten free diet but I haven't tried that yet. I have read that it can be very beneficial for thyroid sufferers.

[greygoose in reply to lesbud1]

What are your thyroid levels?

[lesbud1 in reply to greygoose]

well they were hypo according to us but gp not convinced . do you remember I have had radioiodine therapy about 20yrs ago and carbimazole then thyroxine for a few years until I had a reaction to it and the old gp took me off and said my levels were almost normal anyway so I never went back on it. I should have thought that was strange then but just had faith in gps then. I am considering going private to see an endo to discuss where I am with my thyroid. I am very over weight and my legs get swollen throughout the day. They are big normally but get very big then once I go to bed they calm down a bit. anyway think I need to get sorted with a doctor who can take my history into consideration not just a blood result.

[greygoose in reply to lesbud1]

I'm afraid I can't even remember last week! lol But, does sound as if you are pretty hypo, and need retesting as soon as possible. And that is probably why your tongue is swollen. Don't know about the dry eyes. Perhaps you have Sjogren's? Might be a good idea to see an optician.

[lesbud1 in reply to greygoose]

thanks. this makes me realise I need to get a blood test done and see a specialist instead on knocking my head against a brick wall. thanks for all the help you always supply. new year. new focus on my health.

[waveylines in reply to lesbud1]

Dry eyes is a symptom of hypothyroidism & B12 deficiency. It os pointless your GP testing B12 once you are on injections as it will always give a high reading. What your GP should be doing is going on symptoms to work out frequency. Some people need injecting more frequently.

Honestly how could your GP take you off levothyroxine stating your levels are nearly normal. They were up there BECAUSE you are on medication. Words fail me -truly.....

Id ask for your thyroid to be rechecked asap.

[lesbud1 in reply to waveylines]

I have but have to do it privately my GP seems to only look at the blood results. She will give me numerous medications for symptoms, which I decline, but not thyroid treatment. I have carpal tunnel which I manage with night splints too. I have almost given up going to her. I have had at least one chest infection a year and pneumonia twice but when I asked if I could have the pneumonia jab she said I wasn't eligible as I was only 59 but I could when I am 65, even though the chest infections usually last at least 5 weeks, with antibiotics. A friend of mine had pneumonia once and was given the jab by her doctor, she is younger than me but lives in a different area. Go figure. She is not interested in my symptoms. Actually she never even asks what they are. She just says the bloods are normal

[SlowDragon Administrator in reply to lesbud1]

Carpel tunnel is common hypothyroid symptom

Get all four vitamins optimal and then get FULL Thyroid and vitamin testing via Medichecks

Making sure to get blood test as early as possible in morning before eating or drinking anything other than water

Gluten free diet helps thousands of patients with Graves' disease or Hashimoto's

Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists

thyroiduk.org.uk/tuk/About_...

Come back with new post once you get new thyroid results

[Wetsuiter in reply to lesbud1]

so when was your last thyroid blood test, and what were the results (with ranges)

[Jazzw in reply to lesbud1]

Carpal tunnel can also be a Vit B6 deficiency. How good is your Vit B complex?

I’m thinking this could still be a B12 issue. Some people need far more than 8-weekly doses of B12.

[Thor63]

Hi I'm the same tested for sjogrens, not got it, terrible dry eyes and mouth in night on waking, was diagnosed with chronic fatigue 6 years ago start of menopause, recent private gp now treating me for hypothyroidism dismissed chronic fatigue. All my problems seem to start then. Optician explained mucus membranes dry out eyes at menopause as with all other parts of our body. I have cream for vaginal dryness. Evolve drops for eyes. My vitamin levels are good so I don't think its that, hypothyroidism and menopause causing it, it's such a shock to our body lack of vital hormones that play a crucial rolls in cell function in our bodies. I hope all these symptoms lessen as medication dosage increases Hope this helps 🙏

[pennyannie]

Hello again Lesbud

I went through a period of severe eye, nose, and mouth dryness with my dentist suggesting Sjogren's Syndrome.

My symptoms matched those detailed on the SS website so I asked my doctor who referred me to hospital, and after various appointments and a lip biopsy I was found negative for Sjogren's but low in ferritin, and further referrals for endoscopy and colonoscopy were negative for cancer. This all took around 2 years of referrals and appointments and ultimately I was no further forward, apart from the low ferritin reading.

I couldn't tolerate the iron supplements so started eating liver and reading this website.

I had had RAI for Graves Disease some 8 years prior, and thought maybe there was a connection, and purchased Elaine Moore's book, Graves Disease - A Practical Guide.

Within the pages I read that some people suffer Sjogren's type symptoms after RAI.

I thought my doctor might be interested so purchased her a copy of the book, but she refused to take it, and called me a conundrum.

I do think a different doctor is the first step as you should be back on some thyroid hormone supplementation as your own thyroid has been ablated and slowly burnt out by RAI and destroyed.

It's a slow build, restoring your core strength of vitamins and minerals but an essential step as thyroid hormone replacement doesn't work well if levels of ferritin, folate B12 and vitamin D are not optimal.

I purchased many eye drops and potions, but just make sure that whatever you use it is preservative free.

I did ask that I be trialled with T3 alongside my Levothyroxine but was refused in early 2018.

I therefore trialled T3 and Natural Desiccated Thyroid for myself and am now settled on NDT and am much approved and getting my life back as best I can.

I didn't choose to self medicate, but felt I had no option.

[MichelleHarris]

Hi lesbud1, Ive had terribly dry eyes since my early 30’s. I have now gone double sighted in my left eye.

The doctors and consultants I have seen have justified their huge egos and salaries by seeing me for 3 minutes and discharging me.

I have been through a range of prescribed drops which have made things worse.

I have found Comfort drops which you can buy in Tesco’s the best.

I also have a humidifier on every night blowing wet air over my head (makes your hair curl).

I also have an air purifier in our bedroom on constantly.

I believe I have either had untreated hypo for many years or the other auto immune sjogrens untreated for many years. I didnt know the link with B12 until I read this post x

[waveylines]

Your GP is trained to deal with symptoms not causes. This is why she keeps offering you meds for each symptom rather than looking at underlying reasons. Chronic conditions seem to be poorly treated as a consequence. Unfortunately the ridiculous 10min window & ignorance of hypothyroidism has made matters worse in getting proper diagnosis & treatment.

Hypothyroidism is known as the great mimicker as it can present in very varied ways - most GPs dont recognise this & as you say rely totally on blood test results which they in turn misinterpret because of the wide ranges.

You may just have to go private & if necessary treat yourself. Before that though I would look for a different GP/ surgery. It is a disgrace what is going on & there must be thousands of people suffering & costing the nhs a lot of money as they are prescribed mutiple meds for symptoms rather than treatment for the underlying cause. I ended up going private & my GP used to frequently comment on how my new thyroid med regime is so much better for me but wouldnt prescribe it on the nhs even though I became well & my symptoms disappeared no longer needing a diverse range of meds. I approached other surgeries & moved when I found one a bit more thyroid friendly. Am sorry if this sounds a tadge negative but you have to put yourself first & it sounds like youve hit a brick wall with your GP...... The GP doesnt suffer but you do!

[Zebra5]

Hi lesbud1 - I too have dry eyes and dry mouth. I am afraid I can't help with the cause except that it started in July 2019 and I was diagnosed with hypothyoidism (Hashi's) in March 2019. Coincidence? I don't think so. I had never had these problems before so feel it must be linked. I woke up on the morning of 1 July and couldn't open my eyes - it wasn't like conjunctivitis, ie. no discharge - but my eyes were so dry that they wouldn't open. I found this upsetting and frightening and while I was splashing water on them in the hope of getting them open, I started to cry, and was able to open them. I also developed hot, itchy ears (inside), a dry nose and a dry mouth (I would wake in the night with my tongue stuck to the top of my mouth), and a dry cough. I had three trips to the doctor and two to the optician. The doctors said it was hay fever (which I have not been troubled with before and I did not agree), and one optician said my eyes were OK (??). The second optician said they were very dry and damaging my cornea and referred me to an eye hospital (six month wait for that appointment so it hasn't happened yet). I cannot say what is causing your dryness, but I understand how unpleasant and worrying it is. My symptoms come and go in terms of severity. I have just had another bout when they have all appeared and have been bad. I think it is linked to when I am under par, but I really think that it is linked to sub-optimal hypothyoid treatment (I take 100mcg of Levo and think I need some T3). From the replies you are getting it seems to be much more common than I realised. I find the following drops helpful but like most things we have to try things out to see what suits us: Hycosan Night (a thick gel which keeps your eyes lubricated all night so they are fine in the morning) - I have to buy that over the counter as I can't get it on prescription - it's available from Amazon; Thealoz Duo which is good for the day time for when my eyes aren't too bad (I can get on prescription) and Xailen Gel which I find better for during the day when my eyes are a bit worse (I can get that on prescription too). All these are preservative free. My eyes are always red to varying degrees - I would love to have clear eyes again!

Regarding Sjogren's Syndrome, all the symptoms are consistent with Sjogren's, and I have a referral to an NHS rheumatologist at the end of this month (having had to wait six months for that). It is my understanding that only the lip biopsy can give a definitive result; absence of the two auto antibodies does not mean absence of Sjogren's. I am not expecting anything illuminating. I also saw a private endo about my thyroid condition as I am not right yet, but he was alarmist about my TSH being suppressed and knew little . I have only been on this saga for a year or so; I know from this forum that many of you have been struggling for a long time. All the best with what you decide to do lesbud1 but do try to persevere.

[Sus64]

There's something called Burning Mouth Syndrome, variety of causes including thyroid and nutrients, in this Suzy Cohen article.

suzycohen.com/articles/burn...

My neighbour had it and her doctor gave her treatment for thrush. Useless.

[Sus64]

Moist heat compress to help stimulate oil glands, recommended by my eye doctor.

amazon.com/Bruder-Activated...

[RockyPath]

If you present yourself to a qualified endocrinologist, this person will take one look at your tongue, eyes, hands, etc. and recognize all of the outward expressions of hypothyroidism, and then ask if you’ve had radiation.

Any care provider who doesn’t do this doesn’t deserve your trust and will not be guided intelligently in treating you.

Good luck.

[Oldbar]

Hi lesbud has anyone mentioned Ted's I have Ted's and get a very dry mouth and tongue I have hyabak drops for eyes I go to the Ted's clinic in St James Hospital Leeds but it is still in the active stage the eye drops do help

[Oldbar]

Forgot to mention might your legs be thyroid dermopath I have that as well but only very miled my gp was treating me for gout for that

[sarosent]

I had terribly dry eyes. In fact, that was the first symptom when I was becoming hypothyroid, along with curled fingers in the morning.

It took me years but I believe I was low on Vitamin A. Found out I have a genetic defect where I don't convert beta carotine to the active Vitamin A. Took fish oil, ate liver sausage, but finally I resorted to Vitamin A retinol gel pills a few times a week. (Hesitated because you don't want to overdose on A, and they don't come in lower dose tables) - but this has helped greatly.

Vitamin A also helps your thyroid.

The sore swollen tongue could be B12 deficiency. Try adenosyl B12 or hydroxy B12 if your blood B12 level is high. the iron should help with the tongue issue also.

for the carpel tunnel, get enough B6 foods and/or try P5P - the activated version of vitamin B6. It helps your nerves. But again, don't want to have too much of this.

If you can tolerate liver (or liver sausage) - it has iron, Vitamin A, and all the B vitamins.

[Drose9193 in reply to sarosent]

You have a lot of knowledge

[dbrowning02]

I just recently had a swollen/sore tongue which turned out to and into burning tongue syndrome. I also had canker sores under the tongue a little bit of a white coating on the tongue. Hormonal imbalance, hypothyroidism where 2 that I matched when I looked at causes. Crazy thing is I wouldn't have even known about this if a friend hadn't been going through the same thing since June and finally got diagnosed. This all started happening at Christmas when I over did it on the sweets. You might want to check it out cuz low saliva and dry eyes where on the list.

[Drose9193]

Hi

Can be possible thyroid related but I would doubt that its just that

I would suggest you check your iron and ferritin

B12

Also possible Sjögren's syndrome

Discuss with your doctor

Hope you get better soon

[PaulB]

Pie Crust tongue is an old men’s of diagnosing Myxedema (Hypothyroidism). I also have dry eyes due to my autoimmune issues.

So hypothyroidism of often has other conditions with it.

Paul

[mstp]

After years of dry eyes and a corneal ulcer last Christmas, my optician asked if I really wanted to get better. He magnified my lash line and sure enough there were lots of crusty deposits along it which were apparently blocking my tear ducts and causing the dry eyes. Then he told me to use Blephex wipes along my lash line night and morning. Since using them, prescription eye drops and, a couple of times a week, a heat pad from the microwave my eyes have been pretty good.

[mstp]

Oh, sorry I signed off before mentioning that I have come to realise that sweet things seem to cause me to have a dry mouth. I have had to cut out most sugar in my diet because it was also keeping me awake at night.

[lesbud1]

thank you all so much for taking the time to reply to my question. I value this forum more than I can say.

[Iodine1]

I finally realized that if I had eaten something I shouldn’t my tongue would thicken and become dry ,a white coating and shortly a few very painful sores. This has made me pay extra attention to diet I found the ointment Oracorte stops the flair up and alleviates the pain within 24 hours. Keeping to a strict diet is the answer for me. I have Hashimoto's and on meds I have

Reduced my anti bodies down to 85. 86. and now have no Thyroid nodes but still working on getting well.

[Goldengirl01]

Dry eyes are associated with thyroid, I have Sjogrens.