Hello, I'm fairly new here and don't really know a lot about posting, replying to posts or anything else yet! So excuse me if I make a "Horlicks" of this...
I'm a 62 year-old woman who has been on Levothyroxine for over thirty years, since the birth of my daughter. I wasn't aware of having had any symptoms of hypothyroidism, but I was told that I should start taking the supplement, so I did...as is the case in the UK, I was given a TSH blood test every year and dosed accordingly.
In 2005 I started experiencing strange neurological "episodes", which meant that I had to take quite a bit of time off work(I was a secondary school teacher). It was eventually diagnosed as a type of partial seizure, the onset of which was considered to be just "one of those things", although there's no history of epilepsy in my family. I was put onto Lamotrigine, but this had such unpleasant side effects that I took myself off it, finding that the condition became very much better, if I followed a low carbohydrate, high fat diet.
In 2015, My husband and I took on the upbringing of our baby grandson. He's now nine and will be with us until he's eighteen. Since the menopause, my seizures have gradually become more problematic as the years have passed. I started doing more of my own research and found out to my amazement, that neurological issues have long been known to be associated with Levothyroxine, especially when an overdose is being given. I had noticed for a long time that when I was having a patch of seizures, which occur for about 10 days every six weeks or so, I also have symptoms consistent with hyperthyroidism rather than hypothyroidism, which is what I'm supposed to have.
Eventually, at the beginning of this year, I asked my GP if I could have some more tests as I was concerned that my symptoms were not being properly understood. I knew that in the USA many other tests are carried out to pinpoint exactly what's going on with the thyroid and the endocrine system. I was told that , here, the labs would simply refuse to process more tests. Instead, I was told that an appointment would be requested with an endocrinologist, but all that's happened is that I've received a letter saying that the endocrinology Dept is very busy and I may or may not be invited for an appointment some time in the future.
In the meantime another doctor offered me a DEXA bone scan. The results of this were a complete shock. I have never been overweight, I don't smoke or drink, have always been fit, get plenty of exercise, have no joint pain and am considered very energetic. However, it turns out that I have advanced osteoporosis in my spine!
I am almost certain that this is due to having been given an overdose of Levothyroxine for many years. The question that comes to mind is: Why, when I started to have neurological issues in 2005, did neither the neurologist nor the GP think about the possibility of this being a side effect caused by the Levothyroxine? It was and still is, the only medicine that I take and this has been known to happen with Levothyroxine for a long time. Maybe, if action had been taken back then, this could have been avoided...
What now?!
I am a woman with two adult children with SPLDs who aren't going to be able to look after me if anything happens. My husband is ill and we are bringing up our grandson for the next nine years. I have been at the "hub" of this situation and I need to continue to be so. I feel that I have been responsible, done what I should to stay healthy, so that I can do what I need to do, but that has now been taken away from me. The implication seemed to be that my spine is very fragile and prone to crumbling and I should be extremely careful from now on.
I don't know what to do. Should I try to get compensation for negligence? I would really appreciate any thoughts about the way forward.
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BizzyLizzy62
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Sorry you are going through all you are going through. Sadly I don't have answers for you, but hopefully some one with the right knowledge will be along to offer help/advice/comfort. It's a lot for you to process, I can understand. Sending you a virtual hug...or as many as you feel might be helpful.
Can you get the GP surgery to print out all your TSH blood test results with ranges as a starting point.
Then, can you get yourself either a Randox (£24 on amazon) Medichecks or Monitor My Health finger prick private Thyroid blood test that tests TPO TSH FT3 and FT4
You should also test your vitamins, Medichecks and MMH do an advanced thyroid with B12, Vit D Ferritin and Folate.
Neurological symptoms are frequently associated with low B12 which could be Pernicious Anaemia which would require more testing at the GP, they should have thought of this, its very common in Autoimmune Thyroid conditions. Balance, Tingling, Numbness all related. Here is a video to watch that explains it all very well. healthunlocked.com/redirect...
Don't supplement B12 or Folate until you have been tested.
Just had a look and Amazon seem to be £29 so perhaps Regenallotment found it on a deal? My daughter and I often compare Amazon prices as they differ seemingly between people!
Thanks for this idea. I think I will definitely look at all your ideas. The "dust has settled a bit" now and I feel a bit more able to think clearly about what to do next!
You are legally entitled to a copy of your medical records, including test results, from your surgery. Ask for a paper copy or get access via an app with a smartphone.
If you get copies of results online please take copies immediately. There have been people who have been given access, then they have queried something with the surgery, and the surgery immediately removes access so the info you need for your query is not available. So always take copies immediately.
Once you have copies or access online you need to look for results and reference ranges for any of the following :
TSH (Thyroid Stimulating Hormone)
Free T4
Free T3
TPO Antibodies
TG Antibodies
Vitamin B12
Vitamin D
Folate
Ferritin
If you have ever had an iron panel, results for that would be helpful.
You can see what such a test might consist of here :
This is a personal opinion, so feel free to ignore it...
Prolia is often prescribed to people with osteoporosis. Be aware that once you start this drug, if you stop taking it you could develop spinal fractures without warning.
Another treatment for osteoporosis is bisphosphonates. I'm not sure if this is true for all the drugs of that type but certainly some of them can cause necrosis of the jaw and your teeth fall out as a result. (This happened to my late mother.)
Personally, I would rather treat my own osteoporosis [if I'm diagnosed with it, which hasn't happened yet] with vitamins and minerals.
There is a forum on HealthUnlocked which discusses bones which you can join for free.
Thanks so much for all these useful ideas! I would also prefer to treat my own osteoporosis. I have started by getting some very good quality vitamins and minerals and am going to see a herbalist. I am pretty fit and intent to do various things that will ensure that the muscles supporting my spine stay strong. using weights and also a weighted vest, worn intermittently is apparently a good thing to do...
I really feel for you BizzyLizzy62, as you have so much to deal with right now. There is much you can do to help your body heal and recover, so do read the links humanbean and others have suggested.
As soon as you are able, do get back to us with copies of your blood tests. If this is in a few days, I suggest starting a new post, as this will alert more forum members to reply.
You REALLY NEED to test BOTH TPO and TG antibodies at least once
So initially I would test via Medichecks or Blue horizon
Highly likely your hypothyroidism is autoimmune
Do you always get same brand Levo at each prescription
How much levothyroxine are you currently taking
What vitamin supplements are you currently taking if any
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Don’t assume over medicated….poor conversion of Ft4 (levothyroxine) to active hormone (Ft3) is highly likely especially with autoimmune thyroid disease and/or low vitamin levels
I can't make out if you have been left under or over replaced? Both bad for bone health!
You have a vast amount of great advice here, I can only add that since finding I have thinning bones I have been taking this supplement which is medically proven to activate bone growth and a few of us are taking it...
Also, for ONE DAY ONLY – Sunday October 20th, 2024 – we will be offering a 10% discount on all purchases of bonebalance™. Simply use code WOD10 to apply the discount.
Randomly or not, the strange Endo I was referred to after Sneaky GP reduced my dose of Levo organised a Dexa scan in July, need to chase it as heard nothing. Will look into Bonebalance, my mum has such severe osteoporosis that consultants were shocked whenever she walked into their consulting rooms rather than being wheeled in. I'll do everything I can to avoid that. She's in her 90's now, very demented and very poor mobility in constant pain.
Sneaky Gp I think was trying to prove overmedication to justify her reducing my Levo, because TSH is suppressed, but wouldn't listen that I am a poor converter so take T3. Endo also seemed lacking in knowledge re Thyroid function and T3 which would be hysterical if it wasn't so dangerous.
My intention is to litigate! Very grateful for all the advice, but I'm furious that this happened for over thirty years and that opportunities to realise what it was happening were completely ignored. Have also discovered that I have very high cholesterol. So I have three symptoms, all of which are linked to the side effects of Levothyroxine. It's the only medication I have ever been on longterm. I want some kind of apology and redress!
I'm afraid your case isn't unusual due to the poor treatment that us hypo's get, high cholesterol again is a classic under-replacement of thyroid hormones, this post has gotten quite long, have you added any results that you have?
I’m not sure that you can definitely conclude that you’ve been overmedicated. It’s just as likely that you’ve been chronically undermedicated, actually.
So the first thing to do is to get hold of your actual results—as many as you can. In the UK you have the right to have them. Ask for a print off from your surgery.
Next… what’s your B12 and folate status? Neurological episodes can sometimes be a feature of Vit B12/folate deficiency. And being deficient in B vits is a side effect of being undermedicated for hypothyroidism.
I’m really hoping a doctor has thought to check that out at some point. But it really wouldn’t surprise me if they haven’t. If you have results for B12 and folate tests, do please post them here. There can be a world of difference between having results in the laboratory reference range and those results being “normal”.
I think that the very least my surgery can do is to help me investigate all this and if necessary, pay for things to be put right as far as possible. I intend to litigate to that end.
Thanks for this. I am afraid that they never have tested me for B12 or folate, or anything else, until I did my own research this year, and various "pennies" started to "drop"! The onset of my partial seizures was just taken as "one of those things" for which I should take a pill and get on with life. The emphasis was on stopping the symptoms, not on finding out why they were happening.
The emphasis was on stopping the symptoms, not on finding out why they were happening.
That is what the NHS is doing in the UK. It's good for the pharmaceutical companies, but not good for patients. It's not good for doctors either - their practice of medicine is being dumbed down all the time. They just learn how to suppress symptoms, not actually cure people.
I have the beginnings of osteoporosis and yes, it is alarming but don't panic. Most important is to get your seizures understood and your medication right for which you have excellent guidance above.
I was offered bisphosphonate which currently I reject….I prefer a bent spine to no teeth - a bit extreme but that is my choice.
There is a recent study out that shows black currents help bone retention….I apologise all reading this that I don't have the reference to hand, but I buy black current powder and add it to smoothies and my dairy free, gluten free cereal. As with most bone treatments they are more preventative than reparative.
Resistance training is also important just working with an exercise band while watching TV or the kids doing their homework will do if you haven’t time for the gym. You also need to follow the guidance from others on this site because your body needs the right fuel to support your bones.
I understand your concerns (having been a dairy farmer during CJD 😖) but feel we have at least learnt a lesson there and procedures have changed, I actually feel a whole lot less confident in the state of our seas and the micro plastics that fish are found to be full of 😟 and feel this could be the next massive health issue along with all the sewage in our water
Yes, prions can be found in faeces, and can be shed during both the preclinical and clinical stages of disease. Prions are proteinaceous infectious agents that can be transmitted through a variety of environmental components, including faeces
It's a bit shocking what the water companies can already detect when there is and outbreak of various viruses etc in an area...
September 17, 2024 | Anna Zarra Aldrich, College of Agriculture, Health and Natural Resources
Study Suggests Blackcurrant Supplementing Mitigates Postmenopausal Bone Loss
Blackcurrant supplements may protect against osteoporosis in menopausal women: Study
28-Nov-2022 By Nicola Gordon-Seymour
Daily consumption of 784 mg of blackcurrant powder can reduce postmenopausal bone loss and potentially enhance bone formation, according to study results.
Source: Nosal, Briana M., Junichi R. Sakaki, Zachary Macdonald, Kyle Mahoney, Kijoon Kim, Matthew Madore, Staci Thornton et al. “Blackcurrants Reduce the Risk of Postmenopausal Osteoporosis: A Pilot Double-Blind, Randomized, Placebo-Controlled Clinical Trial.” Nutrients 14, no. 23 (2022): 4971.
So this is one rather more for before the horse has bolted...if only someone told us these things before menopause, rather than let us flounder around trying to repair the damage 😕
Thanks for this. I don't have the beginnings of osteoporosis, I have advanced osteoporosis of the spine for no other possible reason than Levothyroxine administration in the face of an obvious side effect that was never investigated or even mentioned! I definitely don't want any more drugs...thanks for all your helpful advice...
I am going to say ditto what a few of the other replies have said, It does sound like low B12. For some reason a lot of hypothyroid's have trouble with their B12. I was one of them. I also had the seizure things and they could never find out what they were. I had white lesions on a MRI brain scan. Conclusion it could possibly be B12. I self inject every other day to clear these up. Hopefully you have had a brain MRI. I would get B12 and folate tested. Also T4, T3 and TSH.
I showed osteoporosis in my spine on a dexa scan. Mine has got a lot better with B12 injections. I also take high dose boron and magnesium to build bone. Boron is a big key here. I followed lectures from a scientist (sorry cannot remember his name) his lectures are on youtube. He had osteoporosis in his spine, and was loosing height in his 40's. He is now in his 60's and has the bone mass of someone in their 20's.
Would be great if you could add the Boron Study link... it does seem there is a connection with better use of Vit D though Boron can be toxic so dietary rather than supplementing a safer option
I take 15 mgs a day. Not as much as him. I think he takes 30/60 mgs a day. It is over a year since I listened to his full lectures. I also take it for joint pain and brain health.
Only potential, not concrete evidence. I trained with thee Patrick Holford and it was one of the highly recommended minerals for osteoporosis that along with magnesium. Not calcium although the hospital wanted to give me calcium infusions. I refused. I also take a multi mineral supplement and an amino acid supplement every day. I have been pretty sick.
Prune juice is the highest food boron concentrate but you would have to drink a hell of a lot of prune juice a day. You would never be off the toilet
🤣 Think I'll skip the prunes then... the conclusion... (I have no idea when the XX century was!)
Boron status and thyroid function
In the middle of the XX century it was proposed that boron may be included into the list of compounds resulting in thyroid pathology [85]. However, no serious experimental or clinical support was provided at the moment. Interesting data on the interference between boron and thyroid function were obtained by Nielsen and Penland [86]. In particular, they have demonstrated that B supplementation significantly increased urinary and serum B levels being associated with significantly decreased T3
I do faintly remember that because in the goitre belt in some parts of American where there was low iodine and low selenium, but high boron, they were trying to find out what caused goitre and Boron was banded about. I am hypothyroid I have never had trouble with it, in fact it gives me more energy.
If I can find the research paper on levothyroxine T4 causing osteoporosis, I will post the link for you.
Found it - Hypothyroidism and osteoporosis - also my endo was very cautious about my over range T4 - because of my osteoporosis. He had read a lot of new research papers. I might ask him if I can have copies of those papers next time. And I was not on a high dose only 100mcg. Lowering it made me not be able to get out of bed. I wanted natural thyroid medication but he would not put me on this. He has now added T3. And my T3 is climbing, still not optimal. I am doing so much better. Give another 6 months and I hope to come off of most of it, if I can, I will slowly reduce this time over 6 month period with regular blood tests, not go cold turkey like last time. My endo knows my aims.
Copied and pasted - link at end.
Hypothyroidism itself is not a risk factor for osteoporosis as it does not lead to bone loss. However, if you have hypothyroidism and are on too much replacement therapy to treat the condition then this may result in bone loss.
To prevent this, the thyroxine replacement (levothyroxine) must be carefully monitored to ensure levels do not become too high. This seems to be particularly important if you are elderly as research is indicating an increased risk of hip fracture in those over 70 who are taking high doses of levothyroxine.
Thanks for this, my understand has always been that hypothyroidism slows bone growth/ replacement whereas hyperthyroidism can speed up bone lose so over replacement would have a similar effect
I shall study tomorrow and read through your history 🤗
Boron helps to optimize the production and function of key neurotransmitters like serotonin and dopamine, which are essential for maintaining cognitive health and emotional well-being. But boron’s influence doesn’t stop there. This versatile mineral also plays a role in modulating brain electrical activity.
hello BizzyLizzie I won’t add anything medically to what others have adequately suggested but I too would just like to send you a virtual hug. You’ve a lot on your plate right now, and bringing up a little one in your 60s is hard work too, well done you. Many of us on here will understand your plight as we too have been abandoned by the medical system. I have little faith these days but just try and use it where I can to my advantage and to fight back for all the “lost” years. Biggest good luck to you 🍀💜
There’s a few things that can help this area , but I’m sure your GP is on to this now or should be!
HRT can help if not already on this even post menopause and aware there’s some very new drugs around to help the condition.
Whether this is a case of over or under medicated or actually what many go through after menopause due to a variety of reasons and conditions known & unbeknown to us. Getting the best treatment and looking after general health is now important.
I would never if known about osteoporosis only that my gastroenterologist and dietitian insisted on a Dexa 13yrs ago when diagnosed with coeliac disease this is due to nutritional issues are likely to get from the condition.
I have a 5yrs assessment regarding this instead of a scan as my scan was ok …but actually being overweight is actually a positive thing I was told as weight baring carry that weight helps… they take family history and why I usually advocate getting diagnosis before omitting anything dietary related, as these checks could be missed- however heard many get inadequate treatment regardless of diagnosis… I will be asking for another Dexa scan once post menopause as aware this is really the time it creeps up when we lack these essential protective hormones. I do have many annual blood tests done at GP surgery including bone profiles, also another reason to get diagnosed rather than just go gluten free!
I’m so sorry to hear of your struggles. I too have been hypothyroid for 30+ years along with hyperparathyroidism. Last year I had a sudden surge of my hypothyroid levels. I had lost a lot (5st) of weight so my thyroid levels went through the roof and it’s taken me a year to find out what levothyroxine dose I need to bring everything back under control. I also have osteoporosis in my spine but that was caused by the meds given to me after cancer. I had Prolia injections which stopped the internal bone loss and zolendronic acid which I now find can cause necrosis of the jaw ! but as someone has already told you once you have zolendronic acid you struggle to find a dentist to do anything I had to go to hospital to have dental treatment
Basically any levothyroxine taken is dependant on your weight. Also different brands of levothyroxine can cause different results and symptoms.
You can find all your tests online if you sign up to Patient Access. It also gives you copies of any letters and other test results. Also what you GP is saying about you. If you click on results then at the bottom of each page it shows all of your previous results and you can compare. Hope that helps hugs to you! 🤗
Welcome to this informative and supportive forum. I have been helped tremendously to understand my hypothyroidism and treatment here. I’m 59 and have been treated for hypothyroidism with Levothyroxine for 25 years following the birth of my first child. I now also take some additional self sourced Liothyronine.
As many others have said, your symptoms may have been caused by undermedication. Can I ask how much Levothyroxine you have been taking all this time?
It seems hardly likely that you would be on too high a dose, as GPs are consistently told to reduce doses incorrectly based purely on TSH tests, which is the test most widely used. This is echoed here regularly and is also very much my experience. As others have also. said T4, T3 and vitamins + thyroid anyibodies, ferritin tests etc are also useful, but not usually tested through the NHS.
I hope that with the aid of the wonderful advice on this forum, you will be able to improve your health and I’m so sorry to hear that you have been suffering so much. Sending you my sympathy and a big hug!🤗
It is brilliant here and thanks so much. I'm on 75mg of Levothyroxine, which I gather isn't considered to be a high dose. The doctor wanted to put it up to 100mg, but it made me feel awful! All the neurological symptoms got worse and I felt very depressed as well.
You have been through the mill, no doubt about it and the osteoporosis findings are worrying but so were my mothers . She suffered from severe osteoporosis and had several very bad fractures, including breaking both hips and she survived at 89 and 96 years old respectively! After she was diagnosed she was put on Denosumab injections every 6 months. It increased her bone density by 18%. No mean feat in someone of such an advanced age. I would ask your consultant about it.
With regards the query about being under/over medicated with Levo. and whether that may have contributed to the neurological issues you have experienced. I think other respondees have provided good advice and info, far better than I could.
I hope you get something to assist you as you clearly have a lot on your plate right now so sending best wishes and hugs.
Vit b 6 deficiency is very much linked to epilepsy and seizures. (from googling on the internet) You say your adult children have SPLDS. SPLDS are also linked to genetic mutations where vit B6 may play a key role. All the B vitamins work together, and you may have B12 and folate problems too. If you have deficiencies with B vitamins, your thyroid cannot work properly. B12oils.com explains the interplay with thyroid and B vitamins and minerals.
B12oils.com is an Australian site . It is the work of an Australian research scientist who has developed transdermal active B12 oils which are massaged into the skin. He developed this method of B12 delivery with autistic children in mind, since it is easier than injections to administer. I think the site would be of great interest to you. He is very pro re. OATS tests and hair mineral analysis tests to identify problems such as B6 deficiency. You would find it almost impossible to get the NHS to test your B vitamins , and to act on or recognise that the levels of your B vitamins (especially B6) link to epilepsy etc.
Some epilepsy and seizures, per TV programmes I have watched, and general googling, can be controlled, or massively improved by diet. Basically, I think, genetic mutations mean certain foods cannot be metabolised and if removed from the diet, the problem improves or disappears. You do state that low carbohydrate, high fat diet benefits you.
The scientist is an Australian version of the late, much loved Diogenes , who was also a research scientist. You will find his name on the site. There are around 6 you tube videos on the internet which he has made, more geared to autism, but interesting.
I think researching the above will give you a pathway to follow , and will make sense of a lot for you.
So sorry that you are carrying such a heavy burden, and I hope things improve for you going forwards. Private testing seems to be essential for all of us to make any progress. Other members have already given you invaluable advice. You ,yourself , may have helped another forum member by pointing out how type of diet has helped in your situation. That is how the forum works. Someone, somewhere, has probably walked in your shoes, and can offer practical advice or encouragement.
Hi there I've had hypothyroidism for 30 years too , after the birth of my first borne, my daughter. Anyway I never did well on levothyroxine at 150 mcg daily and after 20 years of feeling awful I ended up on T3 only - 65mcg daily in 3 split doses, only for the last 10 years. Its been better than the levo. Anyway what I want to say is from the age of 50 at the onset of perimenopause I did start hrt. Body identical hrt. That's Utrogestan progesterone 1, 100mg soft pill and sandrena estrogen gel, 1 mg sachet. Both taken each night
I started at 50 and I'm 60 now. My bones are alright from how I feel but I've never had a dexa scan to reveal anything.
However I'll continue with my body identical hrt for always, because of the benefits and how I feel, very well.
It's excellent for bone health and older women do take hrt.for various benefits.
I am glad there's something to take for our hypothyroidism but I do hate taking thyroid hormone replacement, for a life time. There's a fine line between over and under medicating, very difficult.
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Newbie, Multiple U3 Parathyroid and Thyroid Nodules, Seizures and other unusual symptoms 
Newly diagnosed and very confused!
T3 levels 4.4
Need to try something different is T3 the answer.
