I am a 47-year/old female with Hashimoto’s. At the beginning of the year I dropped my Levothyroxine dose down from 125mg to 100mg on the advice of an endo because my TSH had been stuck at 0.01/0.02 for about seven years. My level then leapt up to 5.25 within a few months.
My doctor has suggested I take 125mg of Levo one day and 100mg the next, so I alternate to try and balance things out. Has anyone else had any success trying this cycling method?
I still feel lethargic most of the time and sometimes can’t get out of bed until the afternoon (thank goodness I’m self-employed). But as I am also peri menopausal with adrenal issues, it’s hard to know what’s causing what!
Here are my last two full sets of results:
February (via the NHS)
Free T4 level - 16.4 (12-22)
TSH - 0.55
Free T3 - not tested
Ferritin - 35 (13-150)
Folate - >20.0 ug/L (1.9-25)
May (via Medichecks)
Free T4 - 12.7 (12-22)
TSH - 5.25 (0.27-4.2)
Free T3 - 3.2 (3.1 - 6.8)
Thyroglobulin antibodies - 12.7 (0-115)
Thyroid Peroxidase antibodies - 134 (0-34)
(Unfortunately, they were unable to provide a folate reading due to a sample error, but my B12 was high, as it always seems to be, even though I only take a general vitamin B supplement).
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Do you always get same brand levothyroxine at each prescription
Yes you might need to alternate dose levothyroxine on different days
But most important results are always Ft3 followed by Ft4……NOT TSH
What were thyroid results on 125mcg daily
Essential to regularly retest vitamin D, folate, ferritin and B12 too
What vitamin supplements are you currently taking
Do you know if you have autoimmune thyroid disease also called Hashimoto’s, diagnosed by high thyroid antibodies
Always test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Hi SlowDragon, yes, I do have Hashimoto's. I am also a poor T3 converter but I was taken off T3, even though I was sourcing it myself. I take pretty much every recommended supplement going! I'm trying to cut down and just take a really good high strength multi.
I know that taking a multi vitamin sounds much easier, but the admin girls don't think that they are a good idea. So I stopped using them after my first post on the forum. LoL These girls know what they are talking about!!
Can I just ask why you felt that you had to give up your T3 that you bought yourself?
I asked my GP to help me with T3 about a year ago, but he told me that I should never say T3 to him again, because they were illegal drugs.
So I went it alone. I have been hypo since the late 90's but never given anything except Levo and never referred to an Endo either. I had to learn, with the help of this Forum, about what treatment there was out there.
I haven't tested positive for Hashi's though, but apparently not every Hashi's patient does. I might just be a awkward patient! My ex husband would agree with that!
Ha! I think I'm awkward too. I kept being told by endos to come off it so my body could produce its own. I may start taking it in very small doses, as has been kindly suggested by someone else here. How much do you take, if you don't mind me asking?
I am up to 3 x 25mcg daily, in 4 doses and I think I may have to increase it a bit more. I don't take Levo at all now either. But I will just go with it and see how I go. I have noticed that I begin to get a headache if I am late having my next dose, so I am beginning to understand what suits me and what doesn't.
I've been diagnosed with Hashimoto's. I didn't know you could get an ultrasound for it?! I'm probably being dim but which part of the body do they scan?
Now the second of your links, the Paul Robinson, might apply to me. Because things have come and gone. I have had nothing at all except regular blood tests.
Until the end of 2019 I had decided that I had to just keep taking the Levo, because none of the GP's I saw really told me anything. I was just told that weight gain was my own fault, or the fault of the menopause. So I put it totally out of my mind, because I was driving myself and my family around the bend.
When I started to lose weight in 2011 I never even thought of hypothyroid. When I was losing weight steadily for months, I just thought that if I had been counting calories for all of the years since I started gaining, I would never have got to be so big!
I didn't trust that my weight would remain the same until after Christmas 2012. I gave myself permission to buy some clothes and soon after that it all started coming back!
I haven't had the money to even think of doing such things SlowDragon. But I have sold my house and am downsizing, so it may be possible to do that soon.
I wonder about Hashi's because I can get along well, for periods of time, but then I start to gain weight and nothing stops it's gradual increase. I feel awful, then it settles down again after a period of time, weeks or months and then I suddenly get a period of stability again.
In 2011 for instance I lost over 3 stones and I was only on Levo. I was in size 12 clothes again and I kept it off until the beginning of 2013.
I let myself think it was going to stay away and I went and bought myself new clothes in the New Year sales.
But by Easter 2013, the gain began again and nothing stopped it. I was 15st and size 22 again by the end of the year.
Maybe I am just how I am. It might be all just me. My weight is my main thing that I want to be in control of. I don't like the rest 9fbthe sick feelings, depression, aches and pains, etc. But I could cope better I think, if I could control my weight, but that doesn't happen much with hypo and Levo does it?
But can you tell me, if I had an ultrasound, what could it show that I can't see myself? I mean, there are no tell tail signs of damage without an ultrasound?? Is there no other way of being able to find out. I found my first blood test in my records was in 1997, but I wasn't diagnosed until 1999.
I went to the GP again because I couldn't wear my new engagement ring, my extremities were all getting puffy and I couldn't get my ring off in the mornings and had to have it cut off at one point. When the doc finally got a blood test to diagnose me by, he even apologised to me!! LoL I bought my wedding dress in February 1999 for a July wedding it was a size 14 and I usually had a 12. I had to have it let out though before the July wedding because the gradual gain began after I had bought it just meant it didn't fasten. I didn't look at my wedding photographs many times believe me! It was all put down mostly to an early menopause and the hypo thyroid appeared at the same time.
Only once and they showed zero antibodies. That was last year I think, that is why I don't know whether I am or am not Hashi's.
I am due blood tests for vitamins etc, but I have gone T3 only now, so according to Paul Robinson, tests for thyroid hormones aren't going to be much good to me???
I'm trying to cut down and just take a really good high strength multi.
What does 'high strength' mean? It probably means you won't be getting enough of the things you need, and too much of things you don't need. Don't be taken in by marketing jargon. Read the label and research on internet how much of these things your really need, and how much would over-come a deficiency.
Also, there's no such thing as a 'good' multi. They are all bad for a variety of reasons:
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.
*Vit C should be taken 2 hours away from B12 because it affects how the body uses B12.
*Never take magnesium/zinc/calcium at the same time as they affect the absorption of each other.
*Take zinc and copper separately as zinc affects the absorption of copper.
*Vits A/D/E/K are all fat soluble vitamins, and if taken together can compete for the source of fat. They are best taken away from each other.
* The magnesium you take - and just about everybody needs to take it - should be chosen according to what you want it to do:
Magnesium citrate: mild laxative, best for constipation.
Magnesium taurate: best for cardiovascular health.
Magnesium malate: best for fatigue – helps make ATP energy.
Magnesium glycinate: most bioavailable and absorbable form, non-laxative.
Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.
Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.
Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D.
Wow, thank you for all that information. That's so helpful. I've just paid a small fortune to a supposedly very good nutritionist who told me to scale my vitamins down and take a really good quality multi instead!
Just? Well, depends how well you digest them. And that's the whole point. Hypos are more often than not low in stomach acid, which means that they have trouble digesting food and absorbing nutrients. Which means they are often deficient in a lot of nutrients, which is why they need the supplements in the first place. Supplements have more readily available nutrients - i.e. you don't have to digest food to get at them. And, if you're deficient in magnesium - which most people are, let alone hypos with their special problems, because soils are depleted - you're going to have to eat one hell of a lot of nuts to make up for it.
But, maybe you don't have those problems. Maybe your stomach acid isn't low, and you aren't deficient in magnesium. Trouble is, a blood test can't tell you that. So, how do you know? But, if you have low levels/deficiencies in other vitamins and minerals, it's pretty certain that you will be deficient in magnesium, too.
Hello GreyGoose....no offense meant. I was hoping that if I've optimised my thyroid meds for the last decade my body would slowly recover and my digestive system along with that and my nutrient absorption would improve along with that..... but you say not? We are doomed to poor absorption for ever? The only other way I can do magnesium is through the skin but its sticky stuff. I also tried a home made formula to spray....better & very cheap but messy!....the other tablet/ drink formats upset my digestive system which rather defeats the improving absorption issue....nuts dont. Given everyone's stomach acid reduces with age sadly mine has too....so I guess it won't be long before I'm trying the apple cider vinegar remedy to aid digestion like others.....hey ho. We all are different. My nut idea was a mere suggestion.....nothing more 😊😊
No, I'm saying that I don't know. Your question didn't sound as if you were talking about you, it sounded as if you were talking about people in general. You said 'we'. So, I was explaining why, in general, that wouldn't be enough.
From reading on here, I get the impression - and it is just my interpretation of what I read - that optimising thyroid hormone levels doesn't alway optimise everything else. And, myself, for example, I was more than optimised at one point, I was over-medicated but my B12 - all I could get tested - was still too low. So, I think one has to take the facts and adapt them to fit one's own circumstances. Do you know if your stomach acid is low? Or how well you digest?
Even so, magnesium is a special case, because things that are supposed to contain it don't always contain enough, due - as I said - to soils being depleted. So, I think most people have to be careful about getting enough, and most people could probably benefit from magnesium supplements.
😊 Thanks Greygoose. Well I'm gluten intolerant, and need b12 injections twice daily so can only assume I've lost the ability to store b12 otherwise why would I need that frequency to keep b12 neurological symptoms at bay. Am not alone on that one. The science doesn't appear to be there for that....much still not known.
No I don't know re stomach acid but I am older so its very likely mine has dropped. I must try the spit test... My iron stores are excellant so something must get through though! 😄
Sorry to hear optimising thyroid hormones hasn't optimised your vits/mins for you. How disappointing. . And yes I agree fresh food contain less nutrients per gramme than 50yrs ago. I try to buy organic in the hope the plants stay in the soil longer & theefore its better nutrition but its probably a forlorn hope. Good to miss out on the super nasty chemicals though.....
I think that's the whole problem. There's not much science about nutrition in general. Probably because too many people think it's really not important - most doctors certainly do! When my B12 was found to be low, the doctor said 'so what, it's only a vitamin'!!! That says it all, really.
I’d definitely recommend you follow advice given to get all key vitamins tested, as doing this, posting results on the forum & following advice given massively improved my health. Going gluten free definitely improved my energy levels.
Re peri menopause, I got a lot from reading Gottfried’s The Hormone Cure & trialling some supplements recommended by her (eg sage, red clover). Very best wishes to you.
Thanks so much for your reply. I'll look into all of this. I (genuinely) spent my life's savings seeing a functional nutritionist a few years ago and he diagnosed me with copper toxicity and said that was my main issue, but I was also in peri and had low adrenal readings. I was on about 20 supplements a day at that time and ridiculously I didn't feel any better! In the end I simply couldn't afford to keep taking them all, but I still take the ones that are important for thyroid health.
One think I’ve learnt re supplements or exclusion diets is to try one thing at once for a couple of months, as I got into a mess trying to work out what was effective & what wasn’t!
I think I'm probably in the same boat. Every time I see a nutritionist/specialist, they recommend so many different things I don't know what is and isn't working!
I would focus on getting ferritin, folate, B12 and Vit D optimal, then try other supplements (if needed) one at a time for a couple of months.
It’s so weird how some supplements work for some, but not others (eg re peri menopause, my sister swears by sage, but it didn’t help me at all…. yet red clover alleviated many symptoms for me & did nothing for her!)
Hmm maybe somewhere in between might help then, either with every other day up and down dosing or by splitting the pills smaller and being right on the in between dose daily. Sometimes it's about fine tuning.However if you were tired then on the higher dose and tired now on the lower dose perhaps there's something else going on too which needs more checking.
I had consistently low adrenal readings but I passed the SST test so I was discharged. I'm about to get another blood test to check my levels as that was a few years ago now. I've done a private adrenal saliva and urine test since, but apparently 9am blood tests are really the only way to go with adrenals!
I did a couple of adrenal saliva tests that are 4 or 6 times across the day, have you tried that one? As adrenal levels shift through the day and night naturally. What's the SST test?
It's the test to see if your body can produce its own cortisol, but apparently you need the 9am blood test to give a proper indication of your levels (so the experts tell me!). I did the Dutch test and the levels has basically flatlined. How did yours come out? Were they helpful?
I take 125, 150 on alternate days as I was never quite right on just 125 or 150 - and it seems to work ok for me. I remember the doc who suggested it years ago saying it just means you’re taking 137 daily. Give it a go, it’s surprising what a difference a small alteration can make x
You don’t feel great because your T3 is so low. It would still have been quite low even when on 125 I imagine. I’ve no idea why your doc reduced your Levo as you weren’t over range on t4. I didn’t begin to feel good till T3 was over 6 but certainly many want it high in range. I’d ask for a trial of T3. Or perhaps look for a new doc or consider self sourcing if T3… some people do that on here… but basically you’ll need to take control here as your doc isn’t helping you much.
I think she lowered it because of the high TSH reading? But as a GP she's not very clued up on endocrine system. When I mentioned Secondary Adrenal Insufficiency to her the other day she'd never heard of it.
Your T3 level is woeful. You can't feel well like that. If you felt 125 Levo wasn't right daily and are still tired on 100 I can't see alternate days doing anything much. That T3 will still be low. Get some more of it and add small doses as Slowdragon suggested and see how you feel.
I think your high antibodies are the problem as can be common for menopausal women. From my research estrogen metabolites are not being detoxified and are recirculating. pubmed.ncbi.nlm.nih.gov/167...
I'm a big believer in toxins creating disease conditions. There are methods to detoxify.
Brilliant, thank you for that article. I went to see two experts last year and had some more tests done as part of a work project. One (a functional nutritionist) told me to take DIM to get rid of recirculating oestrogen, and another one (a hormone specialist Dr) told me not to because my oestrogen levels were so low. They gave me so much conflicting advice I feel more confused than ever!
Estrogen is not the problem, it's the mechanism that breaks down metabolites of estrogen. A huge issue can be constipation. Recirculating toxins can build up and now that our foods and nonfoods may contain them it is good idea to look into detoxing on a regular basis. There are programs.
Good, I've used some of Microbe Formula's Mimosa Pudica for parasites. Believe it or not, they are a really common problem. An herbalist at Global Healing grows and packages well and has a 3 step program, I think. Did you have a problem with magnesium? He has an oxygenated magnesium that goes right through you but it will clear up a lot in the digestive tract. Best wishes with everything and contact me if you have questions.
Yes, Dim and something called: Calcium D-Glucarate is the calcium form of D-glucaric acid, a substance produced naturally in small amounts in the body. Glucaric acid is also found in many fruits and vegetables. Scientific studies have found that Calcium D-Glucarate can facilitate complete detoxification and elimination of certain metabolic waste products and environmental compounds from the body. By supporting the body's natural cleansing mechanisms, Calcium D-Glucarate may help to maintain normal cellular function and promote liver, prostate, and breast health.Of course there is probably no real proof that these supplements will work for you.
Cycling (as you call it) is a common way of titivating Levothyroxine & can be successful for many because of Levo’s long half life. However, some members with sensitivity to thyroid hormone replacement meds have said they feel more stable on an equal daily dose.
I don’t think you needed to reduce meds because TSH is often lower than range for too many reasons to list here. Also, you advise of hypo symptoms, your FT3 level is inadequate and TPOAb are elevated meaning your need for thyroid hormone will only increase.
Your ferritin is low and optimal levels are vital in getting Levo working effectively but it is wise to get an iron panel before supplementing. This way it is hoped a deficiency would be overseen by your GP as iron levels would need to be tested every few months. If you are not supplementing Vit B12 can be high if you are having utilisation & excretion issues. Investigate MTHFR for further info.
Multi-vits can be useful if they are the right combos but only once deficiencies have been addressed because otherwise risk not containing enough. The problem with multi-vits comes about because many sold as “thyroid enhancing combos” include iodine or kelp, etc. They can also contain an ill-advised mix such as iron which is well known to prevent absorption of the more delicate vits/minerals, etc.
Some people with genetic impairments might have to continue supplementing large amounts of an individual nutrient (ie Vit D if receptor mutations) but for the rest once we are optimal in our nutrients only requiring a top-up I think a multi-vit is good if we can find one that suits.For example we have no need to separate all fat-soluble vitamins when they are taken from our foods so see no reason to have to supplement fat- soluble Vits A/D/E/K all separately as recommended above in this thread.
In fact many of the good quality Vit D supplements are sold with a little Vit K as a combo because one enhances the effect of the other. There are also many other examples of this and a few very good multi-vit combos available now specifically for people medicating thyroid hormone replacement who have addressed all deficiencies, although they remain still very expensive. Hence I am reticent in recommending these brands. My whole aim now is to downscale the number of bottles on my shelf so it all become more easily manageable.
The other thing to consider is stomach acid which commonly becomes low with hypothyroidism but is required for good absorption of nutrients/iron, effective thyroid hormone conversion and keeping infections in check. I found once I started supplementing Betaine HCL & digestive enzymes, absorption and optimal levels all increased ten fold anyway.
Thank you so much for your advice. Everyone has been so kind and helpful. I think my doctor just saw my TSH, panicked and looked into how to bring it down, which involved dropping my meds.
I've done what you've been asked to do. Levothyroxine is a drug which accumulates slowly, so it's fine. I took 150mcg Levo one day and 125 the next. On the advice of a GP who thought my TSH was too low, like yours, after years on Levothyroxine.
Lowering my dose just made me more unwell and will likely make you more unwell too!!!
Your T4 is not even at the middle of the range and your endo has no idea whether you have sufficient T3.
My GP is lovely but she's not even given the option to tick the box for me have my T3 tested. I also don't have an endo because they signed me out two years ago, which is why I'm doing private tests. It's all a bit frustrating but I know they're incredibly busy.
How funny, my levels have been fine on the dose of 175mg for a long time- but last Sept I had a cold and no it wasnt Covid, and my heart rate when up to 110. so my GP suggested I drop my Levo down by 25mg which I had actually done myself, and then 6 months later he suggested dropping it down another 50mg, but as I was told only drop by 25mg at a time over 3 months then have a blood test and if my TSH levels are still too high only then drop it by another 25mg. I wonder why after 7 years of taking 175mg of Levo am I suddenly over dosing?
I can always tell if Im taking too much as I get a froggie throat.
I get the same! Do you mind me asking how old you are? My mum's thyroid had always been underactive, and then all of a sudden a few years ago it went overactive and she got thyroid eye disease, but there was no explanation for it. It's so strange. It's so hard to get the levels right, isn't it?
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