Just an update from the post I made about my mum and her thyroid issues, we emailed the GP this morning with the blue horizon full thyroid panel results and a list of symptoms with some very gentle prodding about her issues not just being old age related.
This afternoon the surgery phoned me to advise that I could pick up a new prescription for 75mg (she had been dropped to 50mg) at the chemist tomorrow.
I'm so pleased to be able to start mums recovery, and I will be implementing all the great advice I have been given by people on the forum, who were so kind in spending time replying, so thank you all once again.
Keep Informing, keep advising, keep supporting
J
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JosephMaxwell
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Joseph that is great news. Keep asking and posting on here. Most of us have found that the only way for more effective treatment is to educate ourselves and be proactive (=stubborn and blunt).
Well done - hope the increase does the trick for your mum. Just goes to show what can be done. I am now wondering if if you got that good response because you are a man.
Hi Fruitandnutcase I can categorically say it wasn't because I'm a man ...I gave all the details to my sister who then emailed ..hopefully 75 mcg will work
That’s good to know. Sounds like you just put your mum’s case to the doctor in a very good way.
I’ve just read other comments and you’re doing a really great job sorting everything out. Well done you and hopefully it will make a difference to your mum.
I will get to see the brand tomorrow as it's a one off prescription..which then becomes part of her blister pack ..which I then wont know as it has no maker mark. But as you say it's 75mcg so will be Teva .. is the upset due to lactose ?
Joseph, how many tablets are in her blister pack (presumably a dosette box) and what are they? I appreciate they are useful (my late mother had them) but it does mean that multiple tablets are put in one compartment and get taken at the same time and often the tablets can be unidentifiable as they're no longer in their original packaging.
Levo is a fussy hormone and ideally needs to be taken on it's own, on an empty stomach (1 hour before or 2 hours after food) with water only for one hour each side, and 2 hours away from other medication and supplements (although some need 4 hours). This is so that nothing affects it's absorption.
Does mum live on her own or with someone? Is it possible that her Levo can be removed from the dosette box so that she can take it separately, or maybe even ask the pharmacy to dispense the Levo in it's original box rather than include it in the dosette box?
PS - Teva is a lactose free brand, in place of the lactose Mannitol is used and it seems that this is what people have adverse reactions to.
I'm here with her 24/7 as dad has late stage Alzheimer's.. I do think she was taking meds together ..it's been quite complicated ..her morning tablets include omniprazole (for acid reflux ) amolodopine ( high blood pressure) gabapentin ( for neck pain )and the levothyroxine. Her surgery have never given her any instructions about not to take the levo with other meds ,and even today when they phoned the advice was to take it in the morning. Before I joined the forum I had watched some videos on levo , it's sensitivity and that it could be taken at night, so I started getting her to take it at night. The issue with taking at night was that she was getting sicker and therefore assumed taking levo at night was making no difference.Also the out of hours doctor has advised her to take gaviscon before bed , and more if she wakes in the night . So she switched back to mornings , at the moment I've just started giving it to her at 2pm it's the only window I can find that is workable.It did cross my mind when I read the doctors comments from blue horizon that her thyroid hormone could be due to missed medication,that she might not have been taking it correctly.
It's been quite difficult walking a tightrope between care / control with mums meds while juggling caring for dad, but she seems more amenable to my managing her meds,only after she was so very ill over the bank holiday.
I honestly don't want her on any prescribed meds other than the thyroxine , as I think her other issues ..acid reflux , neck pain , high blood pressure could all be low thyroid .
I'm still trying to catch my breath with everything to be honest. I think to get her the 75mcg ..ensure she medicates correctly with the levo is my first objective and I'll try to speak with the chemist about keeping the same brand , then see if the brand she does get agrees with her. I've had issues with the blister pack before as it's put together in a ware house miles away from the chemist.
As you are now managing your mums medication, you can ask the chemist not to have a dosette box, just the normal tablet packets . You would then be able to monitor what brands of levothyroxine she is having, especially since you say there have been issues with the box before.
Request Levothyroxine NOT put in dosette box but kept separate
Once she’s back on correct dose levothyroxine, taken separately, she may eventually be able to ween slowly off Omeprazole
Teva is lactose free, but instead contains mannitol which upsets many people
Presumably if her levothyroxine is currently in dosette box you have no idea which brand she’s using ?
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Many members get GP to specify one particular brand of levothyroxine……or quite often have note added to all prescriptions “ No Teva”
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole (or any PPI) or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If she is normally going to take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
What I good result I am so pleased for you and your Mum. I know what it's like I looked after my Mum until she was 99 years old. Stubborn n blunt, great.
Omeprazole is a proton pump inhibitor (PPI) used for acid reflux, amongst other gastric problems. However, a lot of us hypothyroids suffer with acid reflux and are prescribed them, but being hypothyroid usually means we have too LITTLE stomach acid, not too much. Once hypothyroidism is optimally treated, the acid reflux usually improves. If you look at the numerous posts on here about acid reflux you will find out loads! So you may want to keep an eye on her taking Omeprazole longterm. Yet again, it is GPs treating each individual symptom and not putting it all together into the big picture. I am sure taking PPI's for years has left me with more gastric issues.
When I first had access I remember questioning the fact that my mother outlaw had been on Omeprazole for long periods, when it is only recommended as a short term 'fix' for acid issues, she was taken off them and swapped the BP tablets that were causing the issue 😕
They do have a habit of just prescribing more tablets to deal with the side effects of other meds 🙄 she is now only on BP, Amitriptyline and a whole lot of vits and mins provided by me rather than 10 prescription meds and endless Gaviscon, diarrhoea then constipation remedies
If I had my way my mum would only be on Levothyroxine , I loathe Omeprazole, from everything I've read about it , mum shouldnt take it, but unfortunately she doesnt have a lot of patience when I try natural replacements, apple cider vinegar, digestive enzymes, even when Ive tried to explain that these things take abit of tweeking to get the best results. Can I ask what BP tabs your mother in law was taking ? , mum is on amolodopine.
I think what confuses the issue is that she has a hiatus hernia , so is currently living on vast amounts of gaviscon, as someone else on the forum said ..sort the thyroid and everything else falls into place.
It sounds like you are doing an excellent job questioning all these things 🤗
They sound so alike, happy to take more pills not realising it's the pills that give them the issues.
She is on Amlodipine now, irritatingly I don't have access to the old records since she has recently changed practice, now in a nursing home which has helped a lot with the diet as she absolutely refuted that foods she had been eating all her life could be the cause of the constant cause of reflux, gut and bowel issues. Gaviscon too was a constant addition (need or habit?) Since being in the nursing home Gaviscon hasn't been mentioned 🤷♀️still utterly impossible to reason with though
I think you are right to concentrate on getting the dose and timing right with Levo and see how this effects things.
Have you tried putting blocks under the bed, to raise head end as this helps more so than extra pillows?
Lol ...reasoning ...that's never my mum's style ....she will take anything dished out by a health professional ..but when I want her to try something natural ..I have to get through more hoops than I would do with NICE ..to get her try them.
She's gone long periods without gaviscon ..and PPIs ..but if there's a flare up ..they are the default.She has a wedged cushion to put her in an upright position through the night, as far as I've read the reflux is the valve opening because there isn't enough acid, but her GP said to me lots of people are doing great on doses of omeprazole much higher than mums on, that's the misguided logic being preached.
I'm waiting for myms microbiome test to land ..but I've started her on no dairy ..no gluten ..and no histamine foods ..I think gluten takes two weeks to leave the body, her choking has definitely diminished since having low / histamine foods.
It's an on going battle to keep her on track diet wise.
Hi, just regained access, she was previously on Losartan 100mg mostly for the last 6 years, which when questioned she was swiftly switched over as her sodium levels were 10 below range so shouldn't have been left on them 😳
And that's the whole story with current GP care ..give the pills out ..but don't review unless the patient asks ..I'm sure most people think their GP will contact them and arrange a review or change/stop a pill that is no longer effective..but it's doesn't happen
I couldnt agree more re omeprazole, I dont want her to be on it , she was diagnosed with perncious anemia many years ago , and told it was due to low stomach acid , and she was able to get by without PPIs , but she was diagnosed with a hiatus hernia and that seems to have triggered acid reflux and currently its PPIs and gaviscon, Im hoping I can get the thyroxine to an optimum dose and that will resolve many of her issues
podcast by Eric Baclavage says hiatus hernia CAUSED by low T3 and low stomach acid. My remedy was use apple cider vinegar (teaspoon a day in water like a shot to avoid tooth contact) and betaine with pepsin with heavier meals, don’t eat after 7pm avoid fizzy drinks with food sleep propped up a bit (plank under the head end of the bed) hey presto is gone 🌱
Thanks for your message ,I havent come across Dr Eric .I'll have a look at his YouTube channel tonight. Interesting he thinks low T3/ low stomach acid causes hiatus hernia.
The more Ive read on the forum the more I'm convinced that hitting the sweet spot with levothyroxine will resolve many of mums symptoms.
I tried the apple cider vinegar, betaine HCL ..it didn't work for mum, though she isn t very patient, she once a quick fix , I think you have to try various approaches as everyone is different. I maybe should have tried a betaine with added ox bile. She has a pillow wedge that keeps her upright, but she's not very good at not eating prior to bed. Once the new upper of 75 mg of levothyroxine kicks in I'm hoping I can wean her off the acid blocker and gaviscon.
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