Currently waiting for my new dose to kick in as I've been under-medicated for awhile.
The symptom that worries me most is dry mouth. It affects speech, singing, eating, and—no one ever mentions this, but it's an obvious one—my sex life. So basically all of the good things.
Very distressing.
I'm finding it impossible to be patient while I wait and see if going back to my old dose resolves this symptom.
I am terrified of Sjogren's syndrome, radiation damage, or other irreversibles / untreatables. Please don't remind me of these possibilities—I'm already aware of them, and scared of them.
Looking for success stories from anyone who's been able to resolve this symptom through medication, vitamins, minerals (i.e., something I can actually do something about).
I would appreciate any responses very, very much. Thank you.
Written by
ilyfunnybunny
To view profiles and participate in discussions please or .
Have you got a drinks bottle with the amount you should drink each hour marked up the side of the bottle? The only solution might be to stay well hydrated. Sucki g sugarless sweets might help. I believe you can buy a mouth spray but I've never tried it.
I do already drink lots of water, usually 2 liters or more during the day.
I have considered that maybe thyroid hormones and their various effects on kidneys/electrolytes may make it difficult to achieve proper hydration even while drinking the right amount of water. Not sure though.
I don't know if there's a connection to kidneys or thyroid. It could be related or not. I have dry eyes and mouth and some medicines make it worse. If female, it could be related to reducing oestrogen as women get it more. No idea really. A humidifier might help.
I was also going to suggest drinking more water. I've had a bit of radiation damage to my salivary glands from RAI, and drinking a lot makes a difference. Water doesn't moisten my mouth much, but it seems like water drunk earlier in the day comes back as saliva later.
I wouldn't call 2 litres per day a lot at all, its below the usually recommended amount of 3 litres. I probably drink about 5-6 litres.
I have a couple of metal water bottles by my bed (one 500 and one 750ml) that are refilled a few times per day, and when I eat I'll have a jug of around 1litre.
I've tried a few fake saliva products, but I occasionally hear ones recommended that I haven't tried, so there might be better ones. For me there was little difference to sucking a sweet, which does work okay, but of course then there's sugar and other nasties to worry about.
5-6 liters sounds like a lot. You must pee constantly!
I drink at least 2-3 liters of water daily. Sometimes it's closer to 2, sometimes it's closer to 3. But it seems to me that if this level of intake isn't resolving dryness symptoms, then something else is going on (minerals, hormones, vitamins, scarring from radiation or autoimmunity).
Saliva substitutes make me furious. Like putting a bandaid on a bullet wound.
I chew gum. Luckily my problem is mild enough that gum works.
Last year was the first successful study using stem cells to regenerate radiation-damaged salivary glands in humans.
Hehe, I do pee quite a few times per day. I think it's worth trying to increase your water intake and see if it makes any difference. Like you say, in a way all these things are just a rubbish solution to managing the thing
I quite enjoy drinking a lot of water, it's one of the few things in life you can have as much as you want of. I find if I have a headache, nausea, or a few other things drinking a litre or two of water will have a big impact on it.
I believe I have been living with the long term consequences of drinking RAI and am finally coming out of the other side of this horrendous situation.
My dentist suggested I should be investigated for Sjogren's but the lip biopsy was negative, and the surgeon totally confused by what she saw in my mouth.
I am with Graves Disease and had RAI in 2005 to ablate my thyroid.
I was treated with T4 only and kept in the TSH range which left me unwell.
My symptoms of dry eyes, then ears, nose, and finally mouth started to appear about 8 years after the ablation, though I followed all the instructions given to me.
I am pleased to write that I am almost back to normal.
I believe I was living with the long term consequences of the RAI treatment and was also dealing with gastric mucosa, though no medical person would give me a diagnosis of anything and I was referred to as a conundrum by my doctor.
All my symptoms are well documented as side effects of RAI but I've had to do all this research by myself.
I am now self medicating with NDT and getting my life back as best I can.
I tried several of the products recommended for dry mouth, though can't say any worked particularly well - I'm so sorry you are also going through a similar situation.
I know you're actually looking for answers and not commiseration, but just want to assure you that it can pass, mine has, and so might yours.
P.S. I can't reconcile the improvement in my so called " sicca syndrome " being related to my self medicating with Natural Desiccated Thyroid - I do think however that we need to be kept at optimum medication levels and monitored on T3 and T4 blood tests and not a TSH reading.
I'm still being investigated for Sjogren's, but mouth is nothing like as dry as it was - I think going grain and dairy free have helped and I use fluoride free toothpaste as well as oil pulling (coconut or olive oil) regularly. I also gargle enthusiastically and sing loudly - helps vagus nerve function even if it doesn't help the dryness! Concentrated on getting vitamin and mineral levels checked and optimal as far as possible and getting toxin load down, eating as clean as I can, chucked out all my personal care and household stuff and started again. Can't be certain which vits/mins have helped dryness most but would say magnesium was the best addition for me, overall. (Flakes in footbath or oil spray). Best wishes
Not sure that any of this applies to you but my wife is on T3 only - she had half of her thyroid removed nearly 10 years ago and resorted to "T3 only" when she found she couldn't tolerate levothyroxine.
Every so often her mouth becomes uncomfortably dry and she gets a gritty eye sensation. For some reason, she felt her body needed some T4 and found that she can counteract the dry mouth/gritty eye problem by taking just a single 25mcg dose of T4. She doesn't then need to take any more T4 until the next dry mouth/gritty eyes episode which could be 2 to 3 months further down the line. She never takes more than a single T4 tablet per episode. If she tries to take T4 for more than one day, she gets "internally jittery" and feels unwell.
Don't ask me why she thought this would work but it definitely does work for her within a day or so. All very strange and I bet no endo could explain what's going on here (apart from dismissing it as a placebo effect which I don't think is the case).
As I said at the outset, probably none of this is relevant for you but I thought I would post my wife's experience in case it might be of help to others on T3 only. For those on T4 only (or a T3/T4 combo), I do wonder whether a temporary increase in their T4 dose might help with the dry mouth/gritty eyes problem.
This does actually apply to me somewhat. I've been taking NDT for the last couple of years and found that my dryness got worse the more I took, up to 1.5 grains of NDT with 25mcg T4.
I felt that maybe I just needed more T4, so I've gone back to my old dose of 125mcg Synthroid, plus 5cg of T3 for now (I've had a total thyroidectomy, so I didn't think it would be a good idea to eliminate all T3 in one shot). It's been one week on this dose, and I plan on waiting the full 8 weeks to see what this medicine might do for me.
All in all, very strange! That's wonderful your wife was able to find a solution that works so well.
I do wish we humans knew more about how our own hormones work...
Are you hypothyroid? I had a dry mouth (and other things) for years until I changed T4 for T3 and have been fine for 3 years now. It's one of the symptoms and caused me a lot of problems. I've also had to have cataracts done and a hysterectomy 25 years ago, all connected with hypo.
I am definitely hypothyroid, total thyroidectomy in 2014.
They started me on 125mcg Synthroid just after the thyroidectomy, and I felt great for years until they started gradually lowering my dose. I started NDT hoping it would resolve everything (and because I was too panicked to wait the full 6-8 weeks for T4-only medication to work), but I think it may have been a little too much T3 for me.
Aside from asymptomatic, low-risk thyroid cancer, I was in perfect health before the thyroidectomy, so I do think my symptoms must be related.
I'm not quite understanding your trial/ change of meds and I'm no expert but if you were ok on T4 before why would you reduce the dose?. If it wasn't working for you and you became ill then the option is T3 but it sounds as though t4 was ok for you. For me the T4 wasn't being used and was building up and making me toxic and very ill, as I had no T3 in my body. That caused problems with my heart and affected the electrical impulses and I had to have a pacemaker fitted two years ago. Otherwise I function very well on T3 alone. If you do start on T3 it has to be taken very slowly over quite a period of time. I had Dr Peatfield to consult unfortunately that isn't an option now and GPs won't help. I have had no experience of NDT.
It was my doctor's decision to reduce my medication, based on TSH. I didn't object because I still had no idea how thyroid hormones work—I'd never been sick with anything worse that a flu in my life, so I trusted my doctors implicitly and did everything they said...
Later, when I started having symptoms, I thought that I'd have a better chance of feeling well faster if I took T3 in addition to T4, so I went to a naturopath and requested NDT. I'd read so many bad things about T4 online that I became afraid I would never feel well on T4-only medication, that I'd be stuck in an endless cycle of arguing with doctors and adjusting dosages while my quality of life continued to diminish.
Naive and impatient—classic twenty-something mistakes.
I'm sorry you had to go through the process of taking medication that made you feel ill... I'm very glad to hear that you're doing better now
My TSH is now below 1 but the recommended levels on the NHS are up to about 5-10 ..others will confirm exact range. I was told I was borderline on 7.5!!!!! I was well over. Many could feel very unwell on 2 or 3 but the dr would say it was within guidelines and you were ok and not medicate. Everyone is different. I would have thought that if you were ok on your previous meds then ask to slowly return to those and see what happens. Ask the dr for a print out of your results from the last two or three years including when you felt well and see what the readings were then. I have learnt that you must look after yourself and. NOT rely on the Drs as they haven't a clue! Do lots of research online. You may not even have to consider T3 which is a big step without guidance but don't expect that from your gp.
I get a dry mouth overnight due to being on CPAP, I use Xylimelts which last a few hours in the top of your gum. amazon.co.uk/s?k=xylimelts&...
I have to use a non-sugar sweet under the tongue at night due to dry mouth [and CPAP] but it got really worse - found a great product:
Oracoat - XyliMelts - Dry Mouth - Regular - 40 Count (4-Pack) £33.06 [prices do vary] but generally cheaper buying multiple packs. One of these each night sticks to a tooth/gum and keeps the mouth moist.
I then got Oral Lichen Planus - they also tested for Sjogren's syndrome, fortunately didn't have - so the dry mouth aspect is really helped with the above. Best wishes xox
I get dry eyes and mouth and put on weight on Levo. On NDT I'm pretty normal, but get sore joints, plus cold feet, so back on Levo at the moment. I keep trying to mix the two but every time I do I get heart pulps and sleep issues.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
dry mouth
Success Stories - T3 Works
Success Stories
Has anyone had any success with CBT?
Where are the success stories?
