Hi, I’d gratefully like to receive your advice on whether or not I should ask for a decrease in levo from 100 mcg to 75 mcg. My problem is, I’m slightly over medicated but not enough to advise a reduction. However, the higher my dosage the more weight I pile on, especially on my midriff and stomach. I’m 66 years old, recently diagnosed with osteopenia and also have had Sjögren’s for approximately 20 + years. I’m taking Adcal calcium and vitamin D (only recently started) and 100 mcg Mercury Pharma Levothyroxine. I eat sensibly and walk a minimum of 40 minutes every day, couple of hours a day at weekends.
The reason why I’m wondering about a reduction is, when I was diagnosed with thyroid antibodies about 4 years ago I was given the choice of taking Levo or waiting. I chose to take it and was given 25 mcg. I hadn’t put on any weight for years previously, but when I was increased to 50 mcg, then 75 mcg and this past year 100 mcg my weight has gradually increased and it seems to go on easier the higher my dose. When I asked my GP for my last increase I was feeling very hypo, but I now realise I was being given Teva most months and I now won’t take it as it makes me feel so bad. Now on Mercury Pharma I feel so much better, almost ‘normal’. Here’s my last results from April, 2022 and I really need advice please as I don’t want to upset the Apple cart by a reduction but after going up a dress size and putting on over 1 stone I can’t afford any more clothes. The lab said slightly overactive - no change in medication:
Best advice anyone here can give is never ask for a reduction. If you want to try a lower dose then do so, but just lower the dose yourself and see how you get on. Once you've had your prescription reduced it could be extremely difficult to get it raised again if the need arose.
I am prescribed 150mcg and have been for years; however, because in recent years I've added T3 I now take less Levo, but I've kept my prescription the same for a couple of reasons:
1) If I went down to 125mcg they'd probably want to give me 25mcg tablets which would be a different brand
2) If ever I can't get T3 I'd need to go back to Levo only and would need more than I currently take and probably wouldn't be able to get an increase.
The lab said slightly overactive - no change in medication:
Absolutely not overactive, it's a physical impossibility when you are hypothyroid anyway, your thyroid can't regenerate and suddenly start making excess thyroid hormone. What it can be is overmedicated, which you're not. The lab is just looking at TSH - this is a pituitary hormone which checks to see if we have enough thyroid hormone, if we do TSH stays low, if we don't TSH goes high. Look at your FT4./FT3 levels - well within range so there is no way you can be overmedicated. Something doctors seem totally ignorant about.
Your thyroid results look pretty good although your T4 to T3 conversion comes out at a ratio of 4.04 : 1 whereas below 4 : 1 is generally thought to be better. However, if this ratio suits you then that's absolutely fine.
The Vit D Council, Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health recommending at least 125nmol/L. So you have a long way to go to reach the optimal level.
How much D3 are you taking?
Doctors don't know because they're not taught much about nutrition, but when taking D3 there are important cofactors that are also needed. These are:
Magnesium - this helps the body convert D3 into it's usable form.
Vit K2-MK7 - taking D3 aids absorption of calcium from food and Vit K2-M K7 directs calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as calcification of arteries, kidney stones, etc.
Are you taking these cofactors?
As you are taking calcium, was it tested and were you deficient? Is your GP regularly monitoring your level? Taking D3 is likely going to increase your calcium level anyway.
Serum vitamin B12 236 pg/mL (197 - 771)
This is very low. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Many people with a level in the 300s have been found to need B12 injections due to B12 deficiency.
Do you have any signs of B12 deficiency – check here:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
Was folate also tested? B12 and folate work together.
Is there a reason for the high ferritin level? Are you supplementing with iron? Do yu have an inflammatory condition which could cause ferritin to be raised, was CRP (an inflammatory marker) also tested?
Hi Seaside Susie, thank you for your reply. I’m only taking two Adcal tablets a day containing 10 mcg of vitamin D3 each. I have got calcium results taken in April, 2022:
I was prescribed Adcal by a rheumatologist following a fracture of my T11 verterbrae following a nasty fall. I didn’t take them until recently as I had read about excess calcium clogging my arteries. He also prescribed Alendronic acid but I’m not taking that and my GP has agreed to another bone scan in 3 years.
I’m not taking magnesium or vitamin K2-MK7.
Now that I feel quite well on Mercury Pharma and not Teva I don’t think I’ve got symptoms of B12 deficiency. I can’t find a folate test result.
I think my high ferritin levels are due to Sjögren’s inflammation.
Hi SeasideSusie, I’ve scrapped the Adcal - my bloods are only monitored once a year and I wasn’t deficient in calcium - consultant said it’s the protocol but you don’t have to take them when I pointed out about it possibly clogging my arteries. For some reason that my brain fog won’t allow me to remember, I went to my cupboard after you mentioned magnesium and vitamin D3 K2 and I had unopened bottles of each. I started taking them after dinner last night so thank you for this advice - makes so much sense so why can’t a consultant have this information when treating a patient for so-called osteopenia. He’s a Rheumatologist specialising in RA and Sjögren’s and he laughed when I asked if I could have osteomalacia and said we don’t have rickets in this country. I seemed to know more than him as I’d read a few medical articles stating that Sjögren’s can cause osteomalacia but I didn’t argue, perhaps I should have! However, thanks to you my new vitamin regime this will help my bones in any case.
Hi SlowDragon, thank you for your reply, I’ve just replied to Seaside Susie, but forgot to ask about weight gain - I’ve read a lot about reverse T4 but maybe you can tell from my results that I haven’t got that problem. My mum had the same problem with Levo and over medicated herself and her weight rocketed, especially around the abdomen like me
K thanks Slow Dragon - yes I’ve got Hashimotos. Not on a gluten free diet so I’ll ask dr for a test. Since being on levo I haven’t had any food intolerances - before diagnosis about once every couple of months I got crippling bowel pains with diarrhoea and vomiting - touch wood haven’t had it since taking levo
Taking Adcal really isn't a good idea. As SeasideSusie says, doctors don't know anything about nutrition because they don't learn about it in med school, and have been brain-washed, like the rest of us, to believe that all bones need is lots of calcium. This is not true. Calcium is not a cure or a treatment for osteopenia. What's more, we should be questioning whether osteopenia is a real thing. Here are some interesting articles on this subject:
Thank you grey goose, I’m going to read your links on osteopenia - sounds like I should stop Adcal and take D3 and magnesium and vitamin K2-MK7. I did wonder if my problem with my bones was actually osteomalacia caused by Sjögren’s but the rheumatologist laughed and said we don’t have rickets in this country, when I had clearly read that Sjögren’s can cause it
Yes when my gallbladder was removed it was chock full of just calcium stones. My Vit D was so low it hardy registered. I still have calcium build up in one side of my groin which could only be removed with surgery. It only bothers me if I walk more than about 5 miles, so I haven't bothered. I had never been overweight just the low Vit d.
Hi brightness14, it just shows what too much calcium and a lack of vitaminD does. Have you read SeasideSusie’s reply to me regarding magnesium and vitamin D+MK2 (sorry this may not be accurate on my part so plse read Seasidesusies reply) I’m now taking these instead of Adcal
Hi Jazzw, yes I totally agree - I was quite shocked by his answer and the puppet like way he went about treating me instead of going into my state of health more - just missed the point totally
Hi Greygoose, thank you for the links - what an eye opener! I haven’t been taking Adcal for long and will now go by my original instinct and stop. I’m going to take vitamin D3, magnesium and vitamin K2-MK7. I’m just so glad I didn’t take the prescribed Alendronic acid. I just wish consultants would get their acts together so we can trust what they prescribe, I know it’ll probably never happen!
No, it probably won't because they just don't care enough. Fancy laughing at a patient! How unprofessional. Yes, I think you would be better off following your instinct.
Hi Greygoose, I’ve got Magnesium 440 mg Nutravita and Purolabs Vitamin D3&K already - must’ve bought them and not taken them. Do you think I should start them instead of Adcal and should I take them together? I was going to take aftervevening meal?
That's what I would do, yes. It's said that magnesium makes you sleepy so best to take in the evening. As long as vit D and magnesium are four hours away from thyroid hormone, you can take them when you like, really.
Hi,All I can add to this thread is my reaction to being forced to reduce my levo thyroxine by 25mcg. I went from 150mcg to 125mcg, it doesn’t sound much but those first few weeks were terrible. Acute depression, crying in Tesco for no apparent reason and I lost concentration whilst driving and nearly drove off the road twice. That’s not my character at all. I’m strong and capable and I didn’t know what was happening. I’m sure someone on here can tell you how to reduce your meds safely if you go ahead with it. I wish you well.
Hi Tennis junky, this is what I’m afraid of as I feel quite good at the moment on my present dose and the ladies on this forum have been very helpful and from my bloods they say I’m not overmedicated and in quite a good place thyroid wise so I don’t think a reduction will be good, but I just wish my weight would stop piling on!
Have you tried all the other factors? Gluten, sugar, coffee, soy etc. I have to cut out starch as well to lose any weight. I’m even better when I don’t eat salad! All seems very unfair and I have PCOS adding to it. Protein and veg only and a large glass of red wine! I had tachycardia and was talking faster so I understood I needed to try a reduction but I wasn’t aware of how bad my reaction would be to it. It took weeks to adjust and I felt really ill. I asked for T3 and a referral and got denied both and couldn’t afford to go privately. I take a large handful of vitamins daily, and manage my energy with diet and a self loathing acceptance of my extra weight and knowing I will have to continue to fight my body through the menopause. I really noticed a difference in energy and healing time when I started taking the vitamins from The Autoimmune Institute.
Hi Tennisjunky, I haven’t made any dietary adjustments yet, but have been reading up on B12 and folate deficiencies and the correlation with weight gain, especially abdominal. I’m going to talk to my GP about more tests for this
Hi Ajva, I have had T3 tested and that’s good but haven’t had Rt3 tested - is this reverse T3 as that’s what I’ve read can cause weight gain. I take Mercury Pharma which I feel well on but feel terrible on Teva. Thankyou for your input
Forget reverse T3, it's basically a red herring. It's an expensive test, takes a long time for the results to be available, and can't tell you anything that looking at FT4 and FT3 can.
You can test rT3 and it can tell you if it's high, but what it can't tell is why it's high and there are many, many reasons for high rT3 and only one of them has anything to do with the thyroid, and that is when there is an excess of uncoverted T4 and looking at FT4 and FT3 results will tell you that.
Other conditions that contribute to increased Reverse T3 levels include:
· Chronic fatigue
· Acute illness and injury
· Chronic disease
· Increased cortisol (stress)
· Low cortisol (adrenal fatigue)
· Low iron
· Lyme disease
· Chronic inflammation
Also selenium deficiency, excess physical, mental and environmental stresses. Also Beta-blocker long-term use such as propranolol, metoprolol, etc. Physical injury is a common cause of increased RT3, also illnesses like the flu. Starvation/severe calorie restriction is known to raise RT3. Diabetes when poorly treated is known to increase RT3. Cirrhosis of the liver. Fatty liver disease. Any other liver stress Renal Failure. A fever of unknown cause. Detoxing of high heavy metals.
Yes, I get very frustrated too as struggle to keep my weight down. It's not so much 'weight' as flabbyness! Fluid retention...belly, boobs, top of legs, and upper arms. Find exercise, intermittent fasting, cutting out gluten (haven't eaten bread for 2 years now), help.Like yourself, I sometimes wonder if I should lower my dose, I'm 59, but, as said on here by another reply to your post, when I did, felt so depressed! And constipated!
There is a guy who posts on here, sorry cant remember his forum name, who is convinced Levothyroxine makes you put on weight. However, more on here would say, No, it's being hypothyroid that does that! Fasting does make me feel better and keeps my weight down, but it is not good for T4 to T3 conversion, and you can wake up in morning feeling extra crappy!Tried HRT patches, as of course, my knowledgeable?? GP knew of no interaction with thyroid medication, and...I just filled up with more fluid retention. I do wonder if , as being hypo, I have slower heartrate and that affects build up of fluid?
It is definetely no fun is it? Getting older isn't fun either!
Hi MissDemeanour191, I’ve read a lot about levothyroxine causing weight gain. All I know is that before I was diagnosed I could manage my weight fine but when I started on levo the weight has gradually crept up to over a stone in gained weight now. The scarey part is that with each increased dose my weight gain has escalated. I don’t know the reason but my dear mum suffered the same to the point that she overmedicated and still put more weight on. She gained about 3/4 stones on her small 5’4” frame and ended up eating very small meals. Unfortunately, overmedicating caused arrhythmia which eventually and very sadly caused her heart to fail. This is why I’m scared of over medication.
Our problem is so frustrating, my abdomen has become really big and I think that’s where a lot of weight gain is. It’s awful when nobody has the answer and I feel quite well on the dose I’m on at the moment so I don’t know what to do.
I found getting onto a full therapeutic dose cleared serious constipation, I get occasional bouts, but by keeping walking, drinking, soluble fibre in food, gluten-free free and not eating too much surgery foods (which is almost a ‘poo glue’ for me) is resolving things.
Walking has been hard as I acquired a lateral pelvic tilt. Reason - initially under medicated- led to extreme fatigue- sedentary - led to loss of muscle tone and thus everything in back and hip slipped out.
Once I was well on medication I had the second hurdle to jump working on that blooming pelvic tilt! I am still getting better it is taking time, but I can walk 4 miles no problem when 7 months ago I couldn’t walk to the end of our block of houses.
I’m even starting to show the effects of regular walking, but it is going to take a very long time to shake off the weight I gained 10+ years prior to diagnosis and the mismanagement for the first 6 months afterwards. I will be happy just to lose a couple pounds a months and dare I say it it does seem to be looking I might be on my way.
At my very worst I was hitting 16 stone, I am now 14 stone 12, but that’s taken me over a years to get there, I could be 14 stone by next Easter! Fingers crossed!
Final note to reaffirm what others have said never ask for a dose reduction 😱
Also never have a blood test thrown at you out if the blue. Follow the protocol that is given by forum administrators. Otherwise it is impossible to one see the true picture and two have comparable results taken under same conditions.
You can refuse to have your medication reduced even if doctors try to you are ultimately the master of your own body and if you ever do reduce meds, don’t tell them. If you keep reading on here you will see how many people’s lives are impaired and even destroyed by medical ignorance inability to interpret test results and refusal to consider symptoms or how a person feels. You really have to get up to speed on your own conditions to stand a chance of being well.
HiCharlie-Farley, I’m so sorry you’ve had such a tough time and so glad things are looking up. My dear Mum had a struggle of mis-diagnosis and incorrect treatment and incorrect dosage so I have an idea of what you went through. Things haven’t really improved much as I’m going back 20+ years.
I know but honestly, my experience pales compared to others. I was lucky to find this forum early (relatively speaking), realise the terrible medical ignorance and start reading up on condition taking advice and I’m even reading the odd scientific paper now. I read up to a level where I could argue my case with any GP and worked through 5 of them, Just having a telecon with whoever was available each time I needed my meds upping. My profile documents my journey and how I did it. All our journeys are different but the one common thread is medical ignorance brought us all here.
❤️Good luck with finding your sweet spot, but don’t trust the doctors to find it for you.. there are over 100,000 members in this site. We are the ones who have realised there is a problem with treatment and management of thyroid problems. There are a greater number who don’t know, or do but are so deferential they submit themselves to continued mismanagement. 😱
It’s so awful we have to do this ourselves but, like you, I’m so grateful for this forum and the expertise of the ladies who’ve helped us. Our lives may well have been saved by them - many times too - like me this time with calcium. I didn’t take it when prescribed as I’d read about the blocking of arteries etc., but as I didn’t want Alendronic acid my GP said just take Adcal so I stupidly did but only for a month or so. Now I’ve read the links the ladies have given me about so called osteopenia and calcium danger I’ve stopped the calcium and am taking magnesium and vitamin D + K2 which I already had but for some reason hadn’t taken. I’d forgotten due to brain fog and found them in the cupboard. Now I’ve had explained the importance of them by Seaside Susie I feel so much better as taking calcium worried me. Thank goodness for this group and for the internet - we can now find our own way through this minefield! It’s the lack of knowledge with Consultants I find very disturbing. I’m very lucky to have an excellent GP who listens to me and seems to keep a good check with my blood tests.
Hi Charlie Farley, we are in such a vulnerable position where thyroid problems are so mis-handled by the medical profession. Well over 20 years ago my dear mum went through all of this, weight gain very similar to you. She over medicated - her consultant warned her it could be dangerous but she was desperate and nothing helped, even over medicating. Unfortunately it caused arrhythmia which very sadly went undiagnosed and she passed away suddenly aged 72. She was always terrified of me suffering like she did but unfortunately I developed Hashimotos about 10 years after her passing. I have to learn from what happened to my mum so will never over medicate, however, I completely understand why someone would do this when nothing seems to help and nobody has the answers
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