Hi. I’ve got autoimmune thyroid. Hashimoto. I’ve been on Levothyroxine for 11 years and a antibiotic Erythromycin for 10 years. Recently, for some unexplained reason, each time I take my Levothyroxine 75mcg or even reducing to 50mcg. My body feels like it’s shutting down. I get a very heavy feeling in my limbs. This then makes me struggle to walk or sit up. It has effected my whole body with varying degrees. My face has dropped on one side I couldn’t speak properly just slurring. I’ve been in and out of hospital with no solution. Now they are saying I could have functional disorder. I believe this is code for given up on you. My thyroid has been within range and ok. recently I stopped Levothyroxine and went solo for 10 days I felt great but then my TSH raised the day I took Levothyroxine again I came crashing down again and ended up in A&E again with no outcome from NHS I then tried NDT 60mcg Dr said take 1 grain I was on 75mcg Levothyroxine Dr said 1 grain was equivalent I felt equally as bad if not worse on NDT I’ve recently found out that 1 grain 60mg = 100 Levothyroxine??? Now I’m back on Levothyroxine 50mcg going low and slow but still crippling me that I cannot function properly anymore
I normally work full time and have for 44 years Now I’m housebound
Any ideas please ??
Has anyone had similar issues please.
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McPammy
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The experienced members will be able to help more than me, but, a few things
50-75mcg is a very low dosage of Levothyroxine. 50mcg of Levothyroxine is a starter dosage for people. Normal procedure is test thyroid every 6 weeks with an increase of 25mcg of Levothyroxine every 6 weeks until your thyroid results TSH, T3 & T4 improve, and, most importantly you feel well.
It’s advised TSH to be 1 or below, T3 & T4 in the upper figures of the lab ranges.
Are you able to get hold of your latest thyroid results from your GP.
Your thyroid results might not be right even though your GP stated they are in range. It means they are in lab range, not in the ranges that make us feel better.
You are entitled to your blood results by law, pop in the surgery and ask for a copy.
With you having Hashimoto’s are you gluten free, this can help.
You mention your face dropping, i’m no doctor but did anyone mention bell’s palsy?
It may not be this, but several of my family members have had this and came from no where.
Vitamins levels how are they? Vitamin D, Ferritin, iron, B12.
If you can’t get hold of your blood results, many are forced to have private bloods taken to found out what’s going on.
Medi checks and blue horizon offer this service. Thursday medi checks normally have discount on blood tests.
If testing thyroid always book appointments before 9am in the morning, no eating, drink water only and don’t take your Levothyroxine the morning of your bloods.
Did you ever feel well on Levothyroxine for the 10 years you mention?
Hi. Thanks for your reply. My vit B12 was low but since had loading of 6 injections and now it’s high. My vit D is 92 repleat. My latest TSH is 13 but was 2. This is due to stopping Levothyroxine for 10 days
To prove without it I was not having debilitating effects. It’s not bels palsy as it only lasted about an hour. I’ve always had issues on Levothyroxine but not sure if it’s Erythromycin as always took both together. However, since this spring each time I take Levothyroxine within 2 hours I can’t walk properly unaided.
The latest BMJ research document (summary only below demonstrates the uselessness of testing B12 after treatment as do other guidelines so, hopefully GP will be able to access and read the full document (behind a paywall). At the bottom of page 4 ' under, 'How is Response to treatment assessed'), it outlines that, once treatment is given, blood levels will inevitably increase but it is the clinical condition of the patient that is important:
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."
.............
You have already tested low serum B12 and, as a vegetarian with thyroid disease, at high risk of serious deficiency. Difficulty with walking and balance, crippling fatigue, etc. are neurological symptoms. The above document states that, as there is no reliable test, symptoms are paramount and should be treated with injections 'every other day until no improvement' :
b12deficiency.info/. Lots of information on neurological symptoms, as well as suggestions for writing to your GP.
As it's generally so misunderstood by GPs and specialists who are at least 17 years behind latest research, it's important to know that vitamin B12 is a primordial molecule we can't do without. It has to be treated urgently and adequately when any neurological symptoms appear before they worsen and become permanent.
There are also articles for professionals available for members of the Pernicious Anaemia Society that your surgery might like to read.
Many people have issues with synthetic levothyroxine, ie. T4. It is supposed to convert into the Active Thyroid Hormone T3 - Levothyroxine is an inactive hormone and T3 (liothyronine) is the only Active one and it is T3 which is needed in our millions of T3 receptor cells - it enables our body to function and heart and brain need the most.
When doctors or endocrinologists only look at the TSH and not the Free T4 and Free T3 they are failing in their duty of care.
I would ask for a Full Thyroid Function Test from your GP. That is:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
The blood test (all tests for thyroid hormones) has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levothyroxine and the test and take it afterwards. This give us the best outcome. The doctors only look at the TSH and T4 and TSH drops throughout the day and can mean the difference of getting an increase or not.
Quite a number of Research Teams have found that a combination of T4/T3 suits many people much better than T4 (levo) only.
Ask GP to do the above tests for you - he may not be agreeable but I hope he does agree otherwise you will have to pay a private company to do so. He should also test B12, Vit D, iron, ferritin and folate. Everything has to be optimum.
If GP refuses, I hope not, you can have a home pin-prick blood test that will do all of those above. Make sure you are well hydrated a couple of days before you draw blood and also - do not take any levothyroxine for 24 hours before the private test.
The private company's blood tests are by post. Your doctor may be willing to draw the blood for the pin-ptick tests. It's the least they can do.
You could have a problem with levothyroxine (which is T4 alone) or the T4 in the NDT. I'd ask doctor for a trial of T3 alone. I know the price has gone sky-high but that's not our fault but the producers of it. It could be that your body cannot convert T4 into the Active Thyroid Hormone at all.
To judge this I would ask GP to do a Free T4 and Free T3 blood test as both should be towards the upper part of the ranges.
(I am not medically qualified but had undiagnosed hypothyrodism) for a long time. - not one professional could diagnose me. I had never heard of hypothyroidism and I doubt any of the doctors had either or the A&E who discharged me as 'probably viral with a high cholesterol'. A high cholesterol should have been a red flag as it is a clinical symptom of hypo. My TSH was 100.
I think there is something in the T4 element. But I don't get is that I've been on T4 (Levo) for 11 years and suddenly I'm having big problems. So much so I stopped it. Then got much better. When restarted bad again and in A&E!. They will not listen to me and refuse to think its anything to do with Levo. Probably as T3 is so pricey like £650+ a month now.
Thanks and I will speak to me GP once again and my Endo who will just not listen
I think that, at times, the pharma company may make small changes in the levo (i.e in the fillers/binders) which can affect us, the patient, which it didn't do so before.
You could try taking one antihistamine tablet one hour before your next dose and if you don't have the same reaction, you need to get a new prescription and source another make of levothyroxine.
I am not medically qualified but this was advice from one of TUK's Advisers. I assume it is when we have had a reaction and an antihistamine may stop this happening, therefore we'd be sensitive to a filler/binder in the hormones we are taking. As levothyroxine and liothyronine as thyroid hormones themselves they wouldn't have a bad effect, so it is the fillers/binders that might be the problem.
My suggestion is you get a book by Dr Toft He was an Endocrinologist until 2009 when he retired but he had written s book on Thyroid issues which is readable but i think je makes the point lab results are just that but they should be read in conjunction with you feel
By the way everyone is entitled to receive a printed copy of all test results
I thought that too!! I was put on it for skin issues. I never thought much about it until recently. Now I’ve read it can bring on MG. To be in a antibiotic for so long seems wrong. I feel stupid now that I didn’t know what I was taking. I’ve stopped it now but the muscle weakness persists greatly each time I have Levothyroxine within 2 hours I can hardly walk or sit up.
Yes it is wrong and would have destroyed or upset your gut bacteria causing so many issues. If your B12 was tested after the injections then I am afraid the results will be skewed. You could still have B12 deficiency at a cellular level so if MMA and Homocysteine are tested and results are high in range then this would confirm low B12 in the cells. The blood result shows both bound and unbound B12 and only around 20% can reach the cells where it is needed.
Rather than stopping the Levo I would stop the anti-biotic
Skin problems reflect the health of the gut - so sorting that out should help the skin - hopefully ...
Hi. Yes antibiotic has been stopped. But got to take Levo. I stopped Levo to prove a point. The point was I felt great for days. Then back on Levo I’m housebound again.
One grain NDT is usually reckoned to be 65mcg of levo equivalent. I suspect you were previously undermedicated on 50-75mcg levo and probably needed a dose increase, not a decrease. I'd try increasing NDT to 1.25 grains. I'd also want to know b12, folate, vit D and ferritin and also whether you'd had a mini stroke.
In most UK ranges, a free t4 of 13 would be very low in range and not suggest overmedication, but the opposite. You need to know free T3 (esp if taking NDT) so get private tests done. I grain NDT = 65mcg levothyroxine equivalent (38mcg T4 + 9 mcg T3 = 38 + 3 * 9 - 65mcg OR 28 + 4 * 9 = 74 mcg ). If you were a bad converter, which you probably are with a bad gut microbiome, you might find NDT feels "stronger" than the equivalent levo because of the T3. But 1 grain of NDT is "less" than 75mcg levo. Many people feel better when they stop levo for a short amount of time as TSH rises in an effort to flog the thyroid and this increases conversion - but it doesn't last and burns out your thyroid faster. Going back to a too low dose of levo would produce symptoms like yours as TSH falls, conversion decreases but the low dose isn't enough to replace what your thyroid was just about able to make.
Can you post your blood test results, with the ranges? Just being 'in-range' isn't always good enough, we need to know where in range they fall.
Sounds to me like you had a stroke. Did they not rule that out in a & e? 'Functional disorder' is doctor-speak for 'it's all in your head'! So, don't accept that as a 'diagnosis'!
11 years is a long time to be on an antibiotic. Do you mind if I ask why you're taking it? Do you take it at least two hours away from your levo?
It's not easy to know the exact equivalent of 1 grain of NDT to 75 mcg levo. 100 mcg seems like a rather generous estimation. But, without knowing how well you convert, it's impossible to say. But, even if one grain were equal to 100 mcg levo, what's the problem? You probably needed an increase in dose, anyway.
Have you tried taking different brands of levo? It could be the fillers affecting you. But, to get any real idea of the problem, we really do need to see what has been tested and what the results and ranges were.
Hi I have suffered with MG for most of my life and diagnosed 30 years ago. I don't know if this helps but having been diagnosed with an underactive thyroid 5 years ago , I was afraid to take Levothyroxine as one of the side effects is - muscle weakness. I was told that I had no choice but to take it - so started on 25 mcg then after 2 years 50 mcg and now 75 mcg. I do find that it has improved my MG except when I am under medicated or getting used to the next higher dose. It is then that all my skelatal muscles feel like they are sagging and it is horrible. I also am aware that it is worse if I have missed a meal - and find I feel better if I eat protein. You may be experiencing a side effect of Levothyroxine or ask your doctor to rule out another underlying auto immune disease . Hope you feel better soon and find out what it is.
Thank you for your informative message. I sorry to hear you have had MG for so long.
I'm currently under investigation for MG. I'm waiting to attend hospital to have bloods, single fiber electro test etc.
I feel I may have it as my muscles are so weak. It started in my legs then moved all over my body fluctuating in severity and areas. I've had stroke like symptoms too in my face. And occasional double vision and blurred vision but not always.
I've been in hospital a few times as I collapsed through loss of muscle strength. However, since I became so weak, now each time I take Levo I get much weaker about 2 hours after taking it. I'm thinking is it Levo?? Or could it be that I was prescribed Erythromycin for 10 years!! I've stopped Erythromycin now.
I hope you are OK and all is well with yourself at the moment.
Thank you - it does sound like MG! Typical symptoms are feeling like a Ragdoll, feeling better in the morning and gradually feeling worse, not being able to smile - it is more of a grimace when you look in a mirror. My handwriting is terrible no matter what time of day. Every day is different one day you can feel well and not slur your speech, the next you are like a Ragdoll - no strength. I hope it isn't MG but if it is - keep in touch and I will try to help you through it as I very rarely take medication for it now and am very active. Good Luck !
Hi - Just a thought - join the MG SOCIETY GROUP - MYAWARE - they are a charity and have trained Nurses to talk to . It is free and you can donate if you wish. They might be able to help guide you to a Fast track for a diagnosis, or for treatment as they work with the top specialists! I spoke to the Nurses for my region when I got diagnosed with an Underactive Thyroid and they explained the medication to me far better than the GP as they are specialist nurses. xxx
I still can smile thankfully Its my legs that are the worst problem I have no pain at all and as you say like a rag doll but not always. Sometimes I cant get off the floor if my legs just collapse under me.
Just lately I've been experiencing weird headaches more like pressure. And the past 2 weeks I feel like I'm going to keel over, backwards, sideways or forward. I haven't keeled over yet but I have to grab walls and door frames as I'm having that feeling. I've even had it sitting down. Sudden feeling of about to fall. have you ever experienced that sensation.
I have spoken to Myaware. They are fantastic and very helpful. I'm saying all this but there is a chance I haven't got it to. I don't want to have MG what I need is a diagnosis. Ive been off work for nearly 4 months now and basically housebound.
Never had feelings of falling over... just a heavyness -- like a dead weight ontop of me when laying in bed ....and yes it always starts with cheeks sagging and problems holding my neck up. Ohhh - they musn't keep you waiting any longer - you shouldn't have to suffer like this - it is wrong . When I was bad it was like noone cared - you need to take someone to the Dr with you and fight your corner ... I did after 2 years of trying to find out what was wrong. It worked and my specialist diagnosed me within 15 minutes! Take care and hope you get sorted SOON!!!!! X
Ahh thanks. I am struggling. I know what you mean that you felt no one cared, I feel that too. I take my partner with me to Dr's always. To be honest I could not drive nor hold myself up getting into the Dr's alone. Even a zimmer (hate the thought of it too) is useless as then my arms and back of neck are bad. I haven't driven or been anywhere since the end of April as I'm not safe and too weak. I have a full time job and been off for over 3 months now. No pay either as I'm self employed. Only been hospital and Dr's. I think the Dr's think I'm a nuisance now.
Sorry, but we need the ranges for test results, as they vary from lab to lab.
If Wokhardt is what suits you best, you must insist on always being given Wokhardt. There's no reason why you shouldn't have it - apart from doctors and pharmacists being awkward.
Has the Erythromycin helped with your skin? Do you really think you still need it?
Well, I'm afraid these things do happen, and we rarely find out why. Have you considered asking for NDT? Not often prescribed, but worth a try. And if they won't prescribe it, you could always buy your own.
I think it's probably a very good thing that you've now stopped the Erythromycin. But, it probably means that your good bacteria are now low, as well as the bad bacteria. Perhaps you should consider taking some pre and probiotics. I don't know a lot about them, so might be an idea to post a new question asking about what you should take.
You've only given me the results, not the ranges which are usually in brackets after the results.
So, you have a conversion problem. Your FT3 is very low. Increasing your levo would take your FT4 over-range, which you don't really want. So, the best solution would be to add some T3 to a reduced dose of levo.
Hi. Thank you! I’m going to be seeing an autoimmune specialist soon. I will mention this to her. I spoke with my Endo about T3 recently. He is adamant that I won’t benefit from being on T3. It’s all about cost here in the NHS UK. As T3 is £650 per month then you’d need to pay for private prescription also.
No, that's not what the TSH is saying. It's saying 'you don't need me anymore', but a TSH on its own can't indicate over-medicated (you can't be over-active because you're hypo). It's the FT3 that tells you if you're over-medicated. And, if you reduce your levo, without adding in T3, your FT3 will go down and make you feel even worse.
Oh I see. Is this why they won’t do T3 results then maybe. I only got the T3 result I gave you as I was in hospital on a 999 admissions when I collapsed. I thought I was overactive being 0.22. Chester won’t do your T3 on normal bloods.
They don't do the FT3 because they don't understand it. Or, possibly because more people would realise that they're under-medicated if saw their FT3! I don't know. They say it's because the FT3 test is unreliable because T3 fluctuates, but it don't fluctuate as much as their beloved TSH! I think that's just an excuse.
I doubt any other patient who has any other autoimmune condition would be searching the internet for advice? Maybe for knowledge about the condition but not with the variety we have on this forum.
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