atrial fibrillation and now glaucoma

Early last year I was diagnosed with atrial fibrillation and my levothyroxine dose was halved from 100mcg to 50mcg I had RAI in 1982 and had been on thyroid hormone ever since, never felt well like everyone else but have felt diabolical ever since and have experienced extreme eye changes, GP said your blood test is fine so there has been no help there, didnt expect any anyway. Went to opticians because my eyes felt awful had an immediate referral to hospital and just before Christmas was told I have got glaucoma in one eye, I am sure it is as a result of the hormone being reduced so drastically, as anyone else had this experience, I dont know what to do the cardiologist said I cant see an endo because my blood test is normal, I am so frightened because I dont think any of them know what they are doing and I dont know which way to go, should I ask to be referred to a private endo or will I be wasting my money, I would really appreciate some advice my head is so befuddled and I really feel quite ill and non of them seem to listen to anything you have to say, just your blood test is fine, I know this is a bit of a ramble but I dont seem to be able to explain it all, has anyone else had this happen, I am 72 and I dont trust doctors

11 Replies

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  • Do you have copies of your blood tests results? If not, you really need to get hold of them. If you live in the UK, it is your legal right, under the 1998 Data Protection Act, to have a copy of all your results. You need to see exactly what they've tested, and exactly what the results were. Otherwise, you have no ammunition to fight with.

    It would also be good if you could get hold of your results from when you were on 100 mcg, to see why they thought it necessary to reduce your dose.

    PS I think, rather than an endo, you need a second opinion cardiologist. You were on a very low dose of levo for someone with no thyroid, and low thyroid can cause a lot of heart symptoms, as well as high thyroid. But they always jump to the automatic conclusion that it's due to over-dosing.

  • To halve your levothyroxine to 50 is downright stupid (and I'm not medically qualified. Who can survive on such a low dose for years without it affecting other parts of our body.

    The first thing for you to do is to request a Full Thyroid Function Test and that is TSH, T4, T3, Free T4, Free T3 and antibodies. Also Vitamin B12, Vit d, iron, ferritin and folate.

    The test should be the very earliest possible, fasting although you can drink water. Also allow 24 hours gap between your low dose of levo and the blood test and take it afterwards.

    glaucoma.org.au/article-sep...

    Your Atrial Fibrillation is probably due to your low dose as well. I had heart palpitations all the time I was on levothyroxine. Our brain and heart need T3 to work properly as does the billions of receptor cells in our bodies.

    I don't know how you've gone on so long with 50mcg of levothyroxine and no liothyronine to assist you. i.e. T4/T3 dose which many who've had their thyroid gland removed find a great benefit.

    Levothyroxine (T4) is inactive and has to convert to sufficient T3 to enable our metabolism to work. I should expect you probably have a low temperature as well. Low temps, low pulse is due to hypo and not being on sufficient thyroid hormone replacements. Of course, heart can struggle when there is insufficient T3.

    If your doctor will not do a Full Thyroid Function Test you can get a private one done with one of our recommended labs who also do a pin-prick home test which quite a few members have used. The most important tests which they rarely do, is the Free T4 and Free T3 and I'll give you a link for the reasoning behind these two, but doctors and endocrinologists apparently don't care that their patients aren't recovering but will prescribe other medications for the symptoms.They are following the guidelines which are supposed to help us recover but haven't done much for you since 1982.

    thyroiduk.org.uk/tuk/testin...

    stopthethyroidmadness.com/h...

  • Im posting the results from the blood tests they did when they said my dose should be halved, their words where I was awash with thyroid hormone and that was causing the atrial fibrillation, could you interpret these results for me please Serum TSH level 0.08 mU/L (0.27-4.20) Satisfactory result No action required The A&E doctor requested a Serum free T3 level and this is what the Laboratory sent back Normal No action not tested Previous lab records note this patient is post radioactive iodine and on thyroxine replacement. FT3 would not normally be indicated. This was on the 19/4/2016 and this is what they based the action to halve my dose of Levothyroxine on. I had further tests done on 31/5/2016 the results where Serum TSH level 3.08 mU/L (0.27-4.20 Serum free T4 level 11.6 pmol/L (11.0-25.0 the laboratory said Normal stay on 50mcg. I would be grateful for your opinion on these figures

  • To get more responses from members copy and paste your results onto a new post. However my personal view is that they shouldn't have reduced your dose - they were just guessing that the AF was caused by too much. In fact, when I was on levo only I had constant palps and many ECGs. Only resolved when I stopped levothyroxine and took T3 only.

    Dr Toft is a past President of of British Thyroid Association and is retired. He was also Consultant Physician to the Queen when she stayed in Scotland. His recommendation is that:-

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l. If you want the whole article email louise.roberts@thyroiduk.org.uk who wont be back till the New Year.

    They appear not to check the FT3 when on levothyroxine as the assumption is that we're on sufficient so therefore FT3 should be o.k. That's why they treat 'symptoms' instead of increasing dose.

    Your results from May on a paltry 50mcg:-

    Serum TSH level 3.08 mU/L (0.27-4.20 Serum free T4 level 11.6 pmol/L (11.0-25.0 the laboratory said Normal stay on 50mcg.

    TSH is too high should be 1 or lower - FT4 low should be towards the upper part not the bottom.

    They are only looking at the blood test results, interpreting them wrongly (TSH should be 1 - ) ignoring your clinical symptoms.

  • I have glaucoma too it seems like its a occupational hazard when you have uat too!

  • If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells. Very common to be low in range when hypo or undermedicated.

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's. If you have antibodies then adopting a gluten free diet may really help (don't expect your GP to know about gluten connection or to recommend this)

    Did you have RAI due to Graves?

    chriskresser.com/the-gluten...

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    Also do you always ensure you take Levo on an empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but lots of us find that taking at bedtime can be more effective

    verywell.com/should-i-take-...

    archinte.jamanetwork.com/ar...

    Long research article - final conclusion paragraph below

    "In conclusion, bedtime intake of levothyroxine in our study significantly improved thyroid hormone levels. This may be explained by better gastrointestinal bioavailability at night or by less uptake interference by food or medications. As shown in this study, bedtime administration is more convenient for many patients. Clinicians should inform their patients about the possibility of taking levothyroxine at bedtime. A prolonged period of bedtime levothyroxine therapy may be required for a change in Quality of life to occur."

  • I'll bet your atrial fibrillation is due to low magnesium, and odds are it would decrease or stop in a few days of supplementing 1000mg plus a day, and not high enough thyroid meds, you need a full panel test to see what's going on

    The reason for the fibrillation is calcium allows the heart to contract and magnesium allows it to relax, not enough magnesium causes this, your most likely not deficient in calcium as a lot of foods are fortified in it, but don't understand the partnership with magnesium. Odd thing is if you have a heart attack they'll give you magnesium at the hospital, just a thought for you... Hope that helps... Oh Magnesium needs cofactors too, a B-complex, Boron, Bicarbonate, to work properly

  • Thank you for your email Roadrunnergreg, I have been thinking along the same lines and started a magnesium supplement just before Christmas, I was then hit with glaucoma on the 19th December only in one eye which I am sure is a result of drastically reducing my levo by 50mcg after 34 years on it because of the atrial fibrillation and they want to do laser surgery on it next Friday, I am not going to let them till ive had a second opinion, I am going to a private thyroid clinic after the holiday for advice, my eyes have been a problem for 34 years because of Graves disease and im sure this present trouble is down to low thyroid hormone, I will add the opthamologist who has suggested this proceedure has never seen me before and has no previous records to go on as ive just moved to the area, so called medical professionals really scare me, I tried to tell him about my eye problems but it was like a sausage factory production line and he didnt listen to me. Iam now hoping this private thyroid clinic will help me if not I dont know what to do as the GP and cardiologist are saying my thyroid levels are fine, ( arent they always ) and because my TSH is in range I cant see an endocrinologist, so if I had a full blood panel done privately they dont recognise the results where do you go from there. I never envisaged this situation occurring and I am in a real catch 22 mess. I have felt awful since May when the A&E reduced my levo and they tried to say my thyroid gland had probably regenerated itself after RAI I think not. Sorry about the length of this email but its good to let off steam as I have been in a state of anxiety since the 19th and been unable to do anything because its holiday, really took the pleasure out of Christmas, thanks for listening, have a good new year Daval

  • Hi ok you can save this and show the doctors etc!

    Ask them why their only testing your TSH which is a pituitary hormone that tells your thyroid to make more T4/T3 that's it, to know how your thyroid is performing you need to at the very least have your FT4/FT3 checked, thyroid hormones.

    If the doctors do not check these at the very least how do they know how your converting, and using. Also being in range isn't good enough, symptoms should be gone if your ok.

    Being in range and feeling crap is like wearing shoes a size or two too small, yet their in the manufacturers size range y/n now your goal is a TSH 1or below, and if things are ok you should have a FT4 about 60-65% of the range and a FT3 about 75-80% of the range. If your not there you need your RT3 (reverse t3) if that's high then you have a problem somewhere else possibly an adrenal fatigue issue, could be other things but that's where I'd look first.

    If you've got graves, and get frequent urinary infections, odds are the candida in your thyroid is causing the graves, so need to treat the candida...

    Copy and give the doctor, and ask him/her to do his/her damn job... Greg... Happy new year...

  • Thank you so much for your email, you have said what I couldnt find the words to say, I will print it off and show the relevant docs I have to see in the next few weeks, I havent had urinary infections at all but have had eye problems since the late 70s,( a long time ) and now all of a sudden they are saying panic you have glaucoma and I dont think so cause they are no different to what they have been for 33 years , I have no faith in any of the so called medical profession, god knows who trains them, I would love to meet one who had our problems it would be a different story, Happy New Year to you and everyone on this forum and thank you again for taking the time to reply to me, its much appreciated

  • Hi, no problem we don't mind, we just get damn frustrated at how little the doctors know/don't know. The ranges were created by taking readings from what they perceived as healthy people, a lot of which in reality had sub-clinical thyroid problems in those ranges undiagnosed.

    As for your eyes try vitamin A, Magnesium 750-1000mg a day and a B Complex supplement for the magnesium to function properly, did you know that doctors only spend their last day of training on nutrition, the rest of the time it's learning how to match a drug to the symptoms, very little on the underlying cause of those symptoms.... Note I'm taking 1250mg of magnesium a day and eye pain and dryness improving well. Hope this helps...

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