I was diagnosed with graves disease in 2000, I had radioactive iodine therapy in January 2010 and by March I was diagnosed with hypothyroidism.
I've been on 125mcg of thyroxine ever since but in the past year or 2 I've been suffering with very dry eyes and in the last few months I've put in more than a stone in weight for no apparent reason except I'm getting older...reaching 50 this year!
The doctor only tests me for tsh level once a year. I feel tired, sluggish, achy and fat. I think I need to increase my dose which us why I've done it...only for 2 days so far but I feel a little better already.
I also had laser eye surgery 2 years ago and due to the dryness if my eyes, my vision is far from normal and glasses won't correct it. I'm depressed about this too.
should I go to talk this through with my doctor as my optometrist has effectively washed her hands of me saying there is nothing they can do.
Thanks for any advice.
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TSH73
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Does your doc test your T3 and T4 along with your TSH? Sometimes your TSH can be normal but your T3 low and T4 high. This is the road I'm heading down. I have a T4 to T3 conversion problem (T4 converts to T3, which based on my own research is the juice for every cell in your body) and exacerbates hypothyroid symtoms. Apparently the synthetic thyroid meds don't adequately address this issue. I am researching "desiccated thyroid hormones" and for myself will be moving that particular health issue to a naturopath outside of my insurance. Over here across the pond the medical establishment only prescribes the synthetic meds. Also have your doc check all your vitamin and mineral levels. These are things you can research. Good luck!
All you can really do is to keep piling in the artificial tears - drops or gels but make sure you get the ones that are free of preservatives. You will need to do it lots of times throughout the day, not just two or three times, I keep several bottles - they are in most of my bags, I find them in coat pockets etc There are lots of different makes, I like Hyco San at the moment and there is a prescription version of that you can get from your doctor - some drops can be quite expensive and some are available on prescription only.
Dry eyes are awful, I know when my own eyes dry out I can feel the vision drop, I can pop in some eye drops and all of a sudden I can see properly again. Dry eyes are a nuisance not to mention painful. The other thing that really helps is to squeeze a face cloth out in hot as you can bear water then hold it over your eyes for a while, that feels really good.
I'm assuming your eyes were not dry at the time you had your laser surgery done - I would hope the people who did the laser surgery were unaware of the fact that you were having problems with them - because I don't think they should have done that if you were already having problems.
The trouble is that once laser treatment been done - that's it - it's done which is probably why your optometrist feels she can't do anything to help you. Glasses can only do so much.
I imagine if you had spoken to your optometerist before you had your eyes lasered she would have advised that it was a very bad idea and told you to stick to glasses and use eye drops.
Might be worth asking your doctor to refer you to an eye specialist - I've come across a few doctors who admit their knowledge of eyes is limited - others just don't admit it! Check first and make sure you get yourself sent to someone who specialises in thyroid eye disease - in case you have that - you've had Graves and people withe Graves can have TED. Eye specialists can also prescribe drops etc for dry eyes.
Tell your doctor you are not feeling good and tell him you want a full thyroid profile done and get him to test your B12, Vit D, ferritin and folates at the same time. Get a copy of all your results along with their ranges, post them on here and someone will help you interpret them. Maybe you are putting on weight because you are not at your optimal level of thyroxine or you might be needing to add T3 in with the T4 you are already taking.
I don't think I would mention weight gain to your doctor, from what you read on here a lot of doctors don't seem to be sympathetic about weight gain and will just say 'eat less, move more' which most people will have been desperately trying to do before they have gone to the doctor - so it might be better if you stick with saying you feel sluggish and achy.
Hopefully your doc can refer you to a decent eye consultant. It might be worth trying to find out about eye specialists in your area before you go. Or even posting a question on here. There are people on here who I'm sure could recommend eye specialists, you want to find someone who specialises in thyroid eyes.
Hope you can get sorted out because dry eyes are just so miserable. When you tell people you have dry eyes they have no idea how horrible it is. Good luck 😊
Feeling better after 2 days of increased Thyroxine is unlikely because of the thyroxine- or I would increase myself as the medics will not let me.Suspect it's because you are taking control of your health. Putting one over the doc. I worry I would run out of pills and be denied more.
My eyelid stuck to my eye ,very painful. Use gel but only at night can manage during day.Have not had laser treatment except for a torn retina.
Treepie, I completely disagree. One can indeed feel better within hours of taking a little extra (i.e. 25mcg) thyroxine. This was something I discovered very early on in my thyroxine dosing journey. It can take a long time for that little extra to affect the TSH level but that has little to do with how it affects you in terms of symptoms. Equally, it's possible to feel worse very quickly by taking a little extra. That's not to say that everyone will notice a rapid change. Some people are more sensitive than others.
I do feel better but I am a little concerned that I will eventually run out and I'll have to own up. I'm due a blood test in April but I'm wondering whether to try to get one sooner. But they only check for tsh and I'm guessing the extra 25mcg won't make any difference to the tsh level.
maybe I ought to stop taking the extra 25mcg and get a blood test asap. I'm wondering if they would do a t3 and t4 if I offer to pay for it.
then maybe I'll get the extra 25mcg with the doctors approval.
As it supposedly takes 7-10 days when commencing treatment to notice a difference as was guessing that a difference in 2 days after increasing was a psychological effect like the placebo effect. But if you are right I might risk it myself. I think I can order 14 days before I run out so have some leeway to try for a few days.
The key thing to remember with thyroid issues is that they can and do affect people quite differently. Whilst it might be 7-10 days for one person to notice a difference when commencing treatment, others notice a change from the very first day.
Suggest that you ask your GP to refer you to an ophthalmologist as you may have thyroid eye disease, this often manifests itself as dry eyes. ( I have recently been diagnosed but never had graves). It needs to be monitored if you have it as it can cause problems and damage to vision in a small number of sufferers.
I would also continue with your increased dose of levothyroxine and assess if you feel better 4-6 weeks after the raise. It is always possible to reduce again and if you do have thyroid eye disease insufficient replacement can trigger a more acute episode.
I wish you luck, it is very hard to find the energy and resolve when feeling chronically unwell
Why don't you get tested privately? That way you will get everything you want tested, it's the only way I've ever been able to get my T3 checked - and my Vit D.
I use the Blue Horizon shown on the TUK website - you get a TUK discount too.
I get their home testing kit. It's very easy to do, everything you need comes in the kit and you get the results in two days.
It's a great feeling knowing what your bloods are before you get tothe doctor or endo😊
Talk it through with your GP before you pay for private tests. You don't have to wait until your yearly TSH check. Go now and tell the GP how you feel and say you would like to try an increase in your thyroxine. Dry eyes are most definitely a symptom of thyroid levels being wrong.
You might get told to have a blood test first before they agree an increase. Or you might get given the increase and then come back after 4- 6 weeks of taking the extra dose for the TSH to be checked. It's worth a try!
I agree TSH should try her doc first but if her doc only wants to test her once a year and then only tests TSH then the home testing kit is good for finding out what's going on.
Think I'd want to be tested before increasing my dose though.
Just a small word of caution, I too have no thyroid due to early papilliary cancer and subsequent removal. My endo has said only yesterday that it would be wise to bring down my level (alternate 100 and 125 at present), just a bit now (13 years post op) because too high doses can be bad for your bones and also your heart. Perhaps someone on this site with experience of this problem, could give you good advice.
I realise elevated thyroid hormones are as bad as too low. I've been there too for 10 years with graves disease...on and off...I recognise the symptoms of high levels better than I do low as I've only been diagnosed as hypo once in March 2010.
I do think I'm more hypo than I'd like to be..although not nearly as bad as I was in 2010.
As you were diagnosed in 2000 and fifteen years later you aren't really in very good health.
I would get a new blood test and ask your doctor to add T3 to your T4 as that makes a big difference sometimes to our wellbeing no matter what your blood tests say.
Email louise.warvill@thyroiduk.org and ask for a copy of the Pulse online article. Question 6 Dr Toft advises how low or TSH can be and also the addition of some T3. Some doctors don't take notice of Dr Toft but he was President of the British Thyroid Association.
please don't tinker with your dose...whilst you may feel better..too much thyroxine can be detrimental to your life..Your doctor will find out when he next asks you for a blood test...
Do yourself a favour, talk to your doctor about it and how you're feeling
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