Hi,
I wonder if anyone would mind telling me whether they have hyperthyroidism and have suffered with mouth ulcers please?
Also, has anyone decided to cut gluten from their diet despite testing negative for Coeliac, and did you find it had any positive/negative difference to symptoms (particularly gastro pain)?
Thank you in advance for your replies 😊
Hey there again -
It could be a reaction to the Carbimazole -
Do you have the Patient Information Leaflet there - I've just found this online -
medicines.org.uk/emc/produc...
Ask that she is switched to Propylthiouraacil - PTU - for short -
Check with 111 - as to your next best step -
in some areas 111 are arranging timed A & E Out Patient appointments -
Otherwise turn up at A & E and hopefully get blood tests run and a prescription for PTU arranged.
I've just found I prefer not to eat gluten - never been tested.
Evening pennyannie and thanks for your reply 😊 I asked about mouth ulcers as my daughter has had them frequently for about the last 3yrs, so way before her recent hyper disgnosis. Was interested in hearing if this was a common symptom.
Likewise, the severe stomach pains are the main symptom which led us to (finally)get diagnosis. Therefore, not new since taking Carbimazole. But despite recent negative bloods for Coeliac, my daughter has decided to try cutting gluten from her diet to see if it makes any difference.
Wondered what experience others had of this?
Thanks 😊
Stomach upsets as you are describing tend to be experienced more by people with Hashimoto's - a thyroid specific AI disease which presents with transient hyper type symptoms and not treated with an AT drug .
The thyroid hormones fall back down into range by themselves - but over time with several AI attacks and transient episodes the thyroid becomes disabled and the patient becomes hypothyroid and needing thyroid hormone replacement.
Generally speaking the antibodies should be run first since they are the medical evidence and proof of a diagnosis and on which a prescription is then raised.
Many forum members follow the research and suggestions of Dr Izabella Wentz who writes as thyroidpharmacist.com - and just wonder if her symptoms are more akin to Hashimoto's ?
Thank you,
Antibodies soon 😊 I hope when we have those results, we might get a better picture.
Carbimazole is generally prescribed when the diagnosis is Graves Disease -
but that would mean a low suppressed TSH which your daughter didn't have -
so I'm tending to think - this is not Graves and in all honesty the abs are run from the initial first blood test sample if the Laboratory are concerned about the TSH and T4 results.
Have we had an antibody readings yet ?
Looking back we only have a slightly below TSH and a slightly over T4 reading -
I think the dose of Carbimazole was high to start off with and if these are the only results we have your daughters T3 and T4 thyroid hormones are now probably very low and she is likely dealing with symptoms of hypothyroidism - and I would stop the AT drug :
But a medical professional should make this decision .
Hi again and thank you for your response 😊
No, her next blood tests (I presume for antibodies) following her initial hyper diagnosis are on 2nd April.
You’re correct; her initially prescribed Carbimazole dose was 30mgs per day. However, we queried this afew days after she began, and it was lowered to 10mgs straight away which she’s now been taking for about 3wks!
Tbh, although her symptoms; mainly gastric pain after eating, and only easing after passing stools are still there, the severity has greatly reduced! With the exception of 3days ago when she ended up in A&E (although hoping this was a ‘blip’). Constipation has now gone too, and she’s more regular… So sorry if too much info! 🙈
Just a quick note, after seeing Dr Sarah Myhill, due to long term abdominal pain+so many tests, our daughter gave up gluten at Dr Myhill's suggestion and the pain significantly reduced! She was told it was IBS, but zdr Myhill days that is a dustbin diagnosis! 18 years later, our daughter says it's was the best decision! Trust this may shed some light.
Thank you 💕
You are very welcome! 🤗
Like many here, I’m not coeliac but am certainly gluten intolerant. All my previous gastric symptoms (gastritis) resolved when I eliminated gluten, so haven’t touched it since. I’d recommend a trial for 3 months to see if it is beneficial. One thing I have learned though is not to try too many dietary changes at once- otherwise it’s hard to work out which change is helpful.
Thank you Buddy195,
That’s really useful advice.
I asked about gluten because although my daughter had a negative coeliac test, she decided to cut gluten from her diet just over a week ago, and although gastro pain still there, it’s much less severe and her digestive system seems to be greatly improved/constipation gone. Her appetite has improved too, although weight increase not yet noticeable (although she will get weighed again next week). I just wondered if others had a similar experience, and also if hyper and coeliac/ gluten intolerance generally seem to be connected?
Hi there, I had Graves Disease. I've no Thyroid now. However I got alot of stomach upset especially after my thyroid was removed. I could not understand why, I thought it could be the hyperthyroid hormones leaving my body. It went on for a few years on and off but in 2017 I was diagnosed with Pernicious Anaemia/functional b12 deficency and four or five years later Autoimmune Gastritis. Mouth Ulcers are a symptom of low B12. So I would advise to get her b12 serum tested. Along with folate, as they both need each other to work in the body. Intrinsic Factor antibodies as well to check for autoimmune and parietal antibodies. I hope I'm not alarming you just no harm to rule it out. B12 issues are closely connected to thyroid issues. Look up Sally Pacholock on Youtube. Her book helped me alot. Could it be B12? . Hope this helps.
Thank you 💕
I’m not coeliac although I only used an over the counter test so I’m not sure how reliable it was, I’d say I am gluten intolerant. I went totally gluten free after I developed inflammatory arthritis which is also an autoimmune condition a couple of years after I had Graves’ disease.
I have always home tested with Medichecks and I noticed my thyroid antibodies started to fall after I went GF. It could have been a coincidence and it was just their time to fall but I watched them reduce steadily the longer I was GF and decided that I was not going to eat gluten containing foods again so I’ve been totally GF since 2015.
Even though I don’t eat wheat /gluten I eat a very well balanced diet so I don’t think I am depriving anything by being GF.
I have found it has made a huge difference to my IBS and it’s worth it for that alone as far as I’m concerned although being GF is no problem for me.
Thank you do much Fruitandnutcase 😊
That is such an interesting reply! My daughters coeliac test result was negative, but we still wondered if she might be (even slightly) sensitive/intolerant to gluten so she decided to cut it from her diet. Maybe we’re clutching at straws as aside from (‘only just out of range’) hyper diagnosis, she’s also had clear test results for crohn’s, an endoscopy and multiple other things, and the doctors/consultants still have no clue as to what is going on!?
Anyway, since gluten free in the last week, her stomach pain (although not gone by any means) has greatly reduced in intensity. I guess this could be coincidence? Or not? Could also be that the Carbimazole is having an effect? Or not? 🤷🏻♀️
Carbimazole is an Anti Thyroid drug and simply blocks one's new, own daily thyroid hormone production and has no direct influence on stomach issues.
And yet stomach issues are commonly linked to/associated symptoms of hyperthyroid. So if Carbimazole was having an effect and reducing/blocking thyroid production, wouldn’t that affect stomach issues??
Not if the issues appear to be gut related and with possible gluten and food sensitivities :
With hyper ones tends to experience a faster metabolism and a faster bowel movement -
With hypo one tends to experience a slowed metabolism and constipation.
Trying gluten free diet for 6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
previous post suggests that hyperthyroid diagnosis is yet to be confirmed
healthunlocked.com/thyroidu...
you said
she’s taking Famotidine (to actually reduce stomach acid!) and has been for several months now, before her recent diagnosis of underactive thyroid!
Likewise, the severe stomach pains are the main symptom which led us to (finally)get diagnosis. Therefore, not new since taking Carbimazole.
Did stomach pains start before being prescribed Famotidine or after?
Oh waay before starting Famotidine! Part of the reason it was prescribed was to reduce stomach acid. Stomach pains began about 8months ago. Various ppi meds tried, then a positive diagnosis of Helicobacter Pylori and eradication meds (successful), then Famotidine prescribed.
So she now takes this each evening and the Carbimazole each morning.
H pylori can be linked to Graves or Hashimoto’s
pubmed.ncbi.nlm.nih.gov/210...
thyroidpharmacist.com/artic...
H Pylori info
uptodate.com/contents/helic....
Very interesting! Thank you 😊
Just added another link in that reply
Thank you 👍😊
Also worth considering if b12 could be low
Thanks so much 😊
Just a thought and from my experience. I have Hashimotos and have suffered from mouth ulcers and sore mouth for 3-4 yrs now. Every dr ignored the fact that my neutrophils were low and each time said you must be fighting off an infection after every full blood test… finally I’m seeing a Haemotologist and the mouth ulcers, which I’m told can also go to stomach, in my case are down to me being Neutropenic. There are lots of triggers that cause my flare ups, salty foods such as crisps, chilli, vinegar and acidic fruit - lemon/pineapple, chocolate! Taking gluten out of my diet and dairy has helped. DF Yogurts can help soothe my throat and honey. I’m still trying to get to the bottom of things but I’m learning lots on my journey and just thought I’d mention just in case x
Thank you so much 💕
hello graves patient here
I had mouth ulcers with graves - not to do with Carbimazole for me as this was prior to treatment etc - I used to get them anyway when run down so I believe graves made this worse.
I’m not a coeliac sufferer however I knew I had a wheat intolerance for many many years which certainly got worse with graves. I picked up a fruit and barley mix by mistake the other day and boy have I reaped the rewards of not realising that one 🙄
Anyway for me personally cutting out gluten helped my energy levels return and lots of rest and relaxing exercise helped with all other symptoms. Stress has been my biggest culprit with graves I believe.
Wishing a speedy recovery journey for your daughter x
Nooneimportant. That happy mistake re barley and fruit mix is called the art of Serendipity!
Thank you for your advice and kindness 💕
Hi,
Aside of meds.
I suffer with burning mouth syndrome and ulcers, often on gums and sore saliva glands.
Consultants first suggestion was it can happen with hormone changes.
X
Hello,
I have suffered from various mouth disorders including occasional ulcers and cracks at the corners of my mouth and I am minded that they are related to systemic consequences of hypothyroidism, which may if not attended to have knock on consequences as part of the joined-up metabolic morbidity of hypothyroid conditions.
These are often insufficiently well understood because individually so many of these things seem passing and inconsequential.
Nonetheless, it is as well to highlight them because they may increase susceptibility to seemingly unrelated problems that do pass the clinical threshold and become subject to heavy duty treatments without proper regard to their origins, particularly given a generally high bar for proper diagnosis and treatment of hypothyroidism itself.
We are aware of various comorbidities associated with hypothyroidism and some, like low stomach acid, gluten intolerance, B12 deficiency, anaemia etc., have been referenced here.
However, problems like gingivitis and periodontal disease may also be aggravated by hypothyroidism and the problem with these is that there is evidence that if untreated there is increasing evidence such conditions have adverse consequences for the heart and the brain.
This is not something to worry about unduly so much as to be aware of in conducting sound hygiene and vigilance relating to hypothyroidism.
For fear of falling foul of the 'thought police' I shall not provide a link here but a simple Perplexity search confirms the association between e.g. mouth ulcers and hypothyroidism:
"Yes, hypothyroidism can contribute to the development of mouth ulcers and cracks at the corners of the mouth.
Hypothyroidism can cause several oral manifestations, including:
Increased susceptibility to mouth ulcers: Patients with hypothyroidism may experience delayed wound healing due to decreased metabolic activity in fibroblasts, which can lead to a higher risk of developing mouth ulcers
Angular cheilitis: This condition causes dry, cracked, and painful corners of the mouth, which is more common in people with thyroid disorders
Dry mouth (xerostomia): Hypothyroidism can lead to reduced saliva production, causing dry mouth and increasing the risk of oral health issues
Enlarged tongue (macroglossia): In severe cases of untreated hypothyroidism, patients may experience an enlarged tongue, which can contribute to oral discomfort
Burning mouth syndrome: This condition, characterized by burning sensations in the mouth, is more common in people with thyroid disease
It's important to note that while hypothyroidism can increase the risk of these oral health issues, proper management of the thyroid condition and good oral hygiene can help prevent or alleviate these symptoms. If you're experiencing persistent mouth ulcers or cracks at the corners of your mouth, it's advisable to consult with both an endocrinologist and a dentist for appropriate treatment."
Take it from someone with a few dental implants that might have been avoided with better dental care and routine hygiene that you should get some decent floss and be sure to learn to use it once a day by wrapping it around them like a rope around a tree and wiggling back and forth from below the gum to to the top on every tooth you want to keep.
If you do this, inside a month your tooth sensitivity and susceptibility to gum bleeding will be eliminated. If you don't your dentist can tell, but may just rub their hands!
My personal view (so far) is that autoimmune thyroid problems are caused by toxins e.g. mercury and that this leads to both hypo and hyper symptoms/states.
-So if your daughter has or has ever had mercury amalgam fillings and or vaccines /shots with heavy metals (however these metals are also in water/food supply etc), then this could be a cause of her thyroid problems. The heavy metals are absorbed by all tissues in body (dentists will tell you otherwise but the evidence is there) including mouth and gut and require specific protocols to remove them from body.
-Chronic mercury poisoning (I use mercury as an example) causes mouth ulcers and stomach problems/can damage stomach lining. .If she does have mercury amalgam fillings then it may be that the ulcers tend to occur close to these, although it seems mercury from any source can cause mouth ulcers). My ulcers far predated diagnosis of thyroid problems.
--When you think that Carbimazole could help the stomach problems, I think this could be true because it would mean lower free t3 at cell level which means cells are less active (in producing proteins etc which mercury binds easily to) and so there is less of an immune response/less inflammation and so less pain. I've never taken Carbimazole myself. (I instead took high dose iodine which is v. controversial for some, but to cut a long story short it has stabilised my thyroid function and definitely prevents me from becoming hyperthyroid - Dr David Brownstein has put a lot of stuff on-line about iodine for AIT which I found v. useful. Personally, I think the iodine works by binding with mercury, so protecting e.g. proteins produced by cells, and thus avoiding/lessening autoimmune reactions.
-Re-gluten: yes, I think that this makes stomach/digestive tract pain worse when one has thyroid AI problems /toxicity - that's my personal experience. Because gluten can cause inflammation, then one role of inflammation is to increase permeability of tissue and thus increase access of immune cells. This means (hypothetically) that relevant antibodies would increase (or antibodies would increase due to signalling from other immune cells) in reaction to mercury (or other toxins) or to tissues that toxins have altered. Thus causing more inflammation, and thus pain.
-I would do some research into Famotidine (and PPI's which also reduce stomach acid). They're routinely prescribed, however if there was no direct evidence that your daughter had overly high stomach acid , then taking drugs to lower stomach acid is likely to increase problems with digestion e.g. SIBO and lead to more stomach/digestive symptoms (and also more serious problems).
-Overall I would look into detoxing which Isabella Wentz goes into, and in her experience of a lot of thyroid patients, this can effect as close as one can get to 'cure' for autoimmune thyroid problems (Cant give you personal info on the effects of detoxing because I haven't done it yet -need to get the mercury fillings removed first).
iodine has a complex relationship to thyroid disorders , it's effects are not always good , or stabilising , so anyone considering using it should have a read through the links on this post and do plenty of research on the potential downsides first : healthunlocked.com/thyroidu... iodine-a-collection-of-useful-information-because-the-search-facility-on-health-unlocked-is-totally-pants
I mentioned Brownstein and he talks of the limited times that iodine should not be used for AIT (which is really only if one has a 'hot' nodule on the thyroid). He does also mention a tiny minority of patients, like a few in his experience, iodine did not suit but that is obvious quickly iodine can be stopped and the effects were not so serious that one should avoid ever trying it (small numbers of people will not respond well to lots of things). But he has very good experience /outcomes of using high dose iodine for AIT. I think we have to avoid internalising the phobia that Medicine has of iodine and recognise that that phobia has little foundation. (Caution - yes, as with many things. But phobia - no). I don't want to be too cynical but I think that phobia has more to do Pharma interests than reality .
Also important to recognise the distinction between side-effects (e.g. iodine can instigate detox of halides with some side-effects, but not major side-effects, and following Brownstein's protocols diminishes/eradicates these) and adverse effects (which one could experience if they had a hot nodule and are serious).
I'll still read through the information in your links though as I would love to find some clarity regarding some of the claims made about iodine but have failed to find it via previous searches.
Also, if iodine is not stabilising this could be due to not taking a sufficient amount.
Thank you for your interesting post, it is very useful to me. I have tried to purchase iodine but have not been able to online. Do you know where I be able to buy this product? Thank you
You're very welcome. I've been using Heiltrophen 5% Lugol's Iodine Solution (which is 5% iodine and 10% potassium iodide: Dr Brownstein recommends potassium iodide combined with iodine) which I got on Amazon. Each drop is about 6mg of iodine/iodide. I take 24mg daily but Dr Brownstein for AIT patients uses up to 50mg or more. If you haven't already seen them he has a free downloadable book and presentations (one specific to AIT) online for some guidance (e.g. he recommends taking natural salt, vitamin C and magnesium to help with any detox symptoms and also selenium). As with anything it's probably best to start low on the Lugol's and increase gradually to make sure all is ok at each dosage level. Here's the link:
amazon.co.uk/Lugols-Iodine-...
Just to say that whilst I have found Lugol's very useful I think this is because the iodine binds with mercury (and maybe other heavy metals). So that's a bit different to Dr Brownstein who thinks it works (only) by correcting an iodine deficiency caused by things bromine (which you get in bread - cant remember if its bromine or bromide) out-competing iodine in the body. He seems to be right about that and provides evidence but I think it's something more, as above. So I am only taking iodine to cope at present with a view to doing a detox of mercury etc (the latter takes month's/ years as it has to be approached slowly and one must get all mercury amalgam dental fillings removed prior to detoxing).
Gosh, I did write a long message but it suddenly vanished! Briefly, I said many thanks for the info you provided, I am ever grateful to you. My GP (like most of NHS) is limited for time, so we don't achieve much. I have to rely on you good people to help advise with your own experiences. I shall read the online article from Dr Brownstein, I'm sure it will help.Thank you again 🙏
Lots of interesting information there! Thank you 😊
I think there is a lot in the mercury thesis, as it's the most toxic element in the Periodic Table bar the radioactive ones and to hear the medical profession talk about it you would think the only safe place for it is in children's teeth.
Having for decades conducted what amounted to a state sponsored 'drill, fill, and bill' campaign to put it there, one can see why NICE might be a little chary of taking a candid look at the protean and systemic sequelae.
The dentists' other favourite, fluoride (routine X-Ray overuse is another story), is at least as thyrotoxic and probably an even more direct culprit for morbidity, as there is no proper place in the human body for fluorine. Yet, it is omnipresent, not least in 'forever chemicals' and many commonly prescribed drugs (the fact fluorine is not meant to be there is why the drugs are apparently so effective - Cipro, Flecainide, Lipitor, Prozac, Prevacid, Celebrex, Zetia, and Flonase for instance), and by halogen substitution, being the lightest of the class, eliminates the others - notably iodine, which is essential to the human body but also the heaviest halogen.
My own suspicions about mercury were stimulated way before I was diagnosed with lone paroxysmal AF and subsequently established later still that I am a poor converter of T4 to T3.
Matter of fact, it was only returning to a doctor overseas to chase up the results for a 'cruel and unusual' mercury blood-test that gave my then doctor with an interest in cardiology cause to follow up on an odd heart rhythm (I had become stuck in permanent AF).
Of course, you'll no doubt be familiar with Nobel Laureate Albert Szent Györgyi, the physician who discovered Vitamin C in 1928, who commented: “When I was a medical student, iodine in the form of KI was the universal medicine. Nobody knew what it did, but it did something and did something good. We students used to sum up the situation in this little rhyme: If ye don’t know where, what, and why, Prescribe ye then K and I.
I suffered with mouth ulcers for thirty years. B12 injections have stopped them.
I am was newly diagnosed by a Consultant as my Thyroid hormones were originally high. However, my GP did repeat bone profile bloods and the results showed normal PTH but calcium was marginally high. His advice is that the Endo should 'watch and wait'! I went on a very low calcium diet which has helped with reducing some symptoms. I'm seeing the Endocrinologist in 2 weeks to discuss.
its really important that your daughter has regular dental checkups as a dentist will be able to advise. I had some mouth ulcers and my dentist sent me for biopsies to check it wasn’t some pre cancerous condition (it wasn’t) but a change of toothpaste seemed to clear it up. Now use Arm and Hammer toothpaste which doesn’t contain whatever is in other toothpastes. Diet is also important. Sweets bad news etc.,
Can’t see why there would be a connection with thyroid really but maybe best look at the oral health first?! Good luck.
Your help again please
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Your thoughts please
