Hello everyone! I hope you’re all feeling well today.
I’m uploading my latest results (alongside previous results for comparison) for advice.
After my blood tests in Feb, I was prescribed 125mcg levothyroxine 7 days a week (an increase from 100mcg levothyroxine 7 days a week which I’d been taking for 4/5yrs). I felt awful, really awful. All of my usual symptoms of brain fog/spaced out and fatigue as well as an awful walking on a boat/vertigo type feeling and a feeling of being full of adrenaline. Horrible!
After a very difficult 7wks, I had more blood tests done. My endocrinologist, on hearing how upset I was, put me back down to 100mcg for a week to get me feeling a bit less extreme again (which worked) and suggested I alternate 125mcg 3 days a week (Mon, Wed and Fri) and 100mcg 4 days a week (Tues, Thurs, Sat and Sun) after that. I started that yesterday.
Being on 125mcg 7 days a week was the worst I’ve felt since being diagnosed but 100mcg 7 days a week also isn’t great - extreme fatigue and brain fog/spaced out. I really hope that alternating will get me to somewhere inbetween!
She recognises that my T3 is on the low side but is now reluctant to trial it because I reacted badly to being slightly over with levothyroxine.
I have just finished another 12wks of iron pills (Ferrous Fumarate) but my ferritin still isn’t great. Yawn. I should probably do another course?!
I came down to 1000IU vit D (vitabiotics) a day (from 2000IU) on the advice of my endocrinologist.
I take a good quality multivitamin (on the advice of my functional doctor) and I think I’ve got them all spaced out correctly thanks to help from this forum!
I’ve been cleaning up my diet since December and I’ve been strictly gluten free since Feb. I started taking probiotics a couple of weeks ago, on the advice of my functional doctor.
Tests were all done at about 9.30am after no food and only water to drink. I stopped supplements a week beforehand and didn’t take levothyroxine until after my test (I usually take it as soon as I wake up).
Any thoughts would be hugely appreciated.
Many thanks.
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underact15
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Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Aa serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Thank you SlowDragon I really appreciate it. I will certainly look into a B complex with folate and B12. I’m not sure why my B12 has gone down, the only thing I’ve changed is my levo dose 🤷🏽♀️
Hi SlowDragon sorry for the delay but here’s a photo of the multivitamin that my functional doc has recommended. I’m currently taking one very similar but with MUCH lower doses. She has also recommended that I take Selenium (BioCare 100ug). What do you think?!
I’m feeling wary of starting these because the doses seem so high?! I don’t want to make things worse! She’s concerned that my homocysteine blood test result is at the top of the range so perhaps it’s what I need (more B12, folate etc). I did ask her about B Complex with folate instead of a multi but she maintains that this multi is very good 🤔
So what dose were you taking when this test was done? Were you alternating 125/100mcg?
How long on that dose before this test?
She recognises that my T3 is on the low side but is now reluctant to trial it because I reacted badly to being slightly over with levothyroxine.
I think it's very clear that you need T3, the low T3 is causing symptoms not the fact that FT4 is high. Taking T3 will reduce your FT4 anyway (that's just what it does), and you could always reduce the Levo a bit when adding T3.
I have just finished another 12wks of iron pills (Ferrous Fumarate) but my ferritin still isn’t great. Yawn. I should probably do another course?!
As you had iron tablets prescribed, did your doctor do a full iron panel, there is only Serum Iron and Ferritin there, there's usually also Transferrin Saturation % and Total Iron Binding Capacity (TIBC) with an iron panel.
Careful monitoring is necessary when taking iron tablets.
Serum iron is recommended to be half way through range and yours is now at 47.68%. Taking more iron tablets could possibly take your serum iron too high soi t might be worth trying to raise your ferritin level by eating liver and other iron rich foods each week (max 200g liver due to it's high Vit A content).
I came down to 1000IU vit D (vitabiotics) a day (from 2000IU) on the advice of my endocrinologist.
There was absolutely no need to reduce your dose. The Vit D Society and Grassroots Health both recommend a level of 100-150nmol/L and I keep mine at the top of that range. A good Vit D level is important for immunity, especially at the moment with Covid.
1,000iu is barely a maintenance dose for someone with a good level already, my maintenance dose to keep as close as possible to 150nmol/L is 5,000iu daily, others find that 2,000iu is right for them.
Vitabiotics D3 are tablets arent' they? Tablets are the least absorbable form and contain lots of excipients, you'd be far better off with oil based softgels or some people like the oral spray.
Do you also take magnesium and Vit K2-MK7 as cofactors of D3?
I take a good quality multivitamin (on the advice of my functional doctor) and I think I’ve got them all spaced out correctly thanks to help from this forum!
Multis aren't recommended here. They contain too little of anything to help low levels, tend to use the cheapest and least absorbable form of active ingredients, and often contain things we shouldn't take unless tested and found to be deficient, eg calcium , iodine. They also tend to contain iron and this affects the absorption of all the other ingredients as iron should be taken 2 hours away from any other supplements.
Do you take a B Complex? Your B12 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."
Thank you SeasideSusie I was on 125mcg levo every day for 7wks before my blood tests on 13th April. That’s the worst I’ve felt, without a doubt. Before that, I was on 100mcg levo every day and had been for about 3yrs. I started alternating between 125 and 100 a couple of days ago so I’ll have more bloods done in 6-8wks. I just hope it doesn’t make me feel as awful as 125 every day did. It was pretty unbearable.
My endocrinologist was very enthusiastic about T3 in Dec and Feb but she wanted to try and increase my levo first. Now she’s reluctant to give T3 a go because I haven’t reacted well to an increase in levo and she thinks I’ll react to T3 in a similar way!? The vertigo, adrenaline etc etc are definitely the worst symptoms I’ve felt! Although the brain fog/dazed/spaced out thing on levo only isn’t great either....! I feel like I have to choose the best of a bad lot!!
That’s a very good point re.serum iron and ferritin, thank you. I will try harder with getting iron into my diet. I did have a full iron panel done; I’ll add in the results when I get home.
Quite shocking re.vitD, wow! The extras! 😱 I’ll look into switching to another vitD supplement, thank you.
I’m not taking B12 or a B complex. There’s B12 in the multivitamin which I started taking in Dec. According to my Feb results, it was working! But now my B12 is lower so I’m not sure anymore...
Hi SeasideSusie I hope you’re well. I’m just reading through all of this again and trying to decide what to do. My endo seems to think that my B12 is fine and my functional doc didn’t really comment although she does think that I perhaps need more B12 and folate because my homocysteine blood test result was top of the range. Is 400ug B12 per day a lot to be taking?! With regards to the quote above - I’m 36 - does that count as an “older adult”!? 🤣🤔 Perhaps not?! I’ve added photos above of what my functional doc has recommended.
Anything that is within the reference range is fine according to any doctor, but it's where in range that's important. I've given you the advice about B12 levels above and personally I'd trust that rather than an endo who hasn't had any training in nutrition.
and my functional doc didn’t really comment although she does think that I perhaps need more B12 and folate because my homocysteine blood test result was top of the range.
Homocysteine and methylmalonic acid (MMA) levels are high in B12 deficiency. As your functional doctor has said this then I would push for further testing for B12 deficiency. Check for signs of B12 deficiency 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.
Is 400ug B12 per day a lot to be taking?!
Not particularly. If you were taking a B12 supplement for low B12 it would be 1,000mcg, 400mcg is a fairly standard amount to include in a B Complex.
With regards to the quote above - I’m 36 - does that count as an “older adult”!?
Sorry, what quote are you referring to? I've had a look but haven't noticed anything.
I’ve added photos above of what my functional doc has recommended.
As everyone who has responded is telling you, we don't recommend multis and the reasons have been made clear in our replies.
As for iodine, the daily recommended amount is 150mcg and we can easily get this from our diet (if we are not vegan) from milk, yogurt, cod, haddock, scampi, etc. That multi contains 150mcg iodine, add that to what you're getting in your diet then that's rather a lot.
Your functional doctor should be testing iodine (with a non-loading test) if they're going to suggest you supplement with it.
I once consulted with a practioner who suggested I take a multi which contained 150mcg iodine. I had already done a non-loading test and had presented her with the result (along with many other tests) and my iodine level was exactly mid-range, I suggested that as I'm not deficient or even low then surely I didn't need to supplement with iodine. Her reply was "it's only a small amount". Well after a short time I retested and my iodine level had gone from 150 to 250 (100-199). I ditched the supplement and I ditched the practioner.
As for selenium, 100mcg is considered a safe amount for most people, 200mcg is often suggested for people with Hashi's, and any higher amount should only be taken under supervision. Too much selenium over time can cause the following:
Garlic breath
Nausea
Diarrhea
Skin rashes
Irritability
Metallic taste in the mouth
Brittle hair or nails
Loss of hair or nails
Discoloured teeth
Nervous system problems
By the way, that multi contains 25mg B6 and the safe amount for regular use is said to be no more than 10mg.
Thanks SeasideSusie you make a lot of sense and I will certainly look into it all.
The quote I was referring to is in the last part of your original comment from Sally’s “Could it Be B12?” - serum B12 should be maintained around 1000pg/ml for “older adults”. I’m probably not an “older adult”?! But I perhaps need more than what my results show 🤔 (13th April showed a level of 424.3pg/ml (range 197-771pg/ml). My MMA (blood) was 0.09 (<0.29umol/L) so that’s fine?! But my homocysteine was 12.3 (3.7-13.9umol/L) so although not over range, it’s top end?! and that’s why she thinks that I perhaps need more B12...and folate!? (Folate 11.35, range 3.89-26.80ng/ml).
Yes I spotted that about B6 and it does say that long term use could cause mild tingling and numbness 😳
I want to trust my functional doc and some of the things she says do make sense but I don’t feel like she’s giving everything enough care and attention. It also goes against what lots of people say on here! 😭 I was hoping it’d all match up so I wouldn’t have to tackle conflicting advice 😭
The quote I was referring to is in the last part of your original comment from Sally’s “Could it Be B12?” - serum B12 should be maintained around 1000pg/ml for “older adults”.
Ah right! (Should have gone to Specsavers!)
I imagine that means "of pensionable age" as B12 deficiency is more common in older people.
So your MMA and Homocysteine are raised (over range) and providing you don't have any signs of B12 deficiency from the lists I gave then I would imagine that supplementing with B12 and a B Complex (to keep all B vitamins balanced) will be enough.
Some members don't have anything complementary to say about functional doctors. I have no opinion, I've never seen one. The practioner I saw was a "hormone specialist" but to be honest she got a lot wrong where I was concerned 🙄
I can't tell you what to do, I have no qualifications other than my own exprience, so you have to decide for yourself. What I would do is to ensure that the key nutrients - Vit D, B12, Folate and Ferritin - are optimal
Selenium should be fine if you stick to the 200mcg limit.
Vit C is fine as it supports the adrenals, you can take that to bowel tolerance if you wish but keep it away from B12 by 2 hours.
You shouldn't be taking a multivitamin anyway for all sorts 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.
Thanks so much @greygoose this is really helpful and makes a lot of sense. I have read a lot of anti multivitamin posts on here but I wanted to give them a go because my functional doc recommended them. I will talk to her about everything that you and your fellow posters have mentioned, thank you 😊
Hi greygoose I hope you’re well. I’m just going through all of this again. My functional doc maintains that the multi that she has recommended (I’ve added photos above) is a good one but I’m hesitant to start taking it! The doses seem high?! 🤷🏽♀️ What do you think?!
You're talking about the multi essentials for Women? I think it's as rubbish as all the others.
Right at the top of the list is that it contains iodine. You really, really do not want to take iodine. Not without getting tested first to see if you need it, and then doing it under the supervision of an experienced practicioner. Not in a multi.
Secondly, it contains iron, which will block the absorption of the vitamins.
Thirdly, it doesn't tell you what form of magnesium, folate and B12 it contains.
Fourthly... well, just got through the list I wrote about multis in general. It's just not designed for people who actually need supplements, it's designed as a means of making money out of people who know nothing about supplements. Which is probably why your endo recommended it.
Doctors know nothing about nutritien because they don't do it in med school. They don't know anything more than the average man in the street. I was never, ever take nutritional advice from a doctor - and lord knows they've given me some strange advice in the past! Like the one that wanted me to live on boiled carrots and rice. Another on 'soup' which sounded more like the water the veggies had been boiled in! Not a trace of fat. Most of them want you to give up all traces of fat, and eat soy, and take iodine... I think I'd be dead by now if I'd taken any of that advice.
Morning greygoose I’m still waiting to hear from her but while I do, I thought I’d give Magnesium some thought. She has recommended x3 Magnesium Glycinate in the evening. Would you agree with that?! Does it interact with anything? I take levothyroxine as soon as I wake up at 6/7am so that wouldn’t be a problem but does it interact with any other supplements? Better with or without food? 🤔
I'm afraid I don't know a lot about selenium, because I don't take it - it doesn't agree with me. But, of course, it should be taken at least two hours away from thyroid hormone. As far as I know, it's ok to take with other supplements, except those already mentioned.
I didn't like being high and over range on t4 but felt a lot better adding in T3. For me taking the whole amount of T3 with my t4 was best initially otherwise if I spread it across the day it gave me peaks and troughs. (And head snd ear pain). You do look like you need some T3.
Same thing happen to me I felt terrible I wanted to go to bed and really not wake up . Please remember this ...Most important thing is to remember take Brand-name thyroid pills DO NOT take generic GENERIC thyroid causes people more problems . My Dr put me on namebrand thyroid pill and then 10 days I was feeling good again 🙏💕
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