Please could someone review this for me... - Thyroid UK

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Please could someone review this for me...

Zazbag profile image
Zazbag

Hello,

Since getting myself in decent health thanks to this forum and liothyronine, I have become quite evangelical whenever I meet another one of us in my everyday life. I am so keen to support and share all the info I have learned from the forum. Today I sent this email to someone I met yesterday who has been struggling after a total thyroidectomy. I wonder if any of you might be willing to take a quick glance at it and confirm that all the info I have included is accurate and comprehensive. My plan is to share it with anyone I meet who tells me they have or know someone with hypothyroidism who is struggling. Thanks in advance!

Email:

Absorption of levothyroxine:

The first step before anything else is to make sure you are taking your levothyroxine properly. These factors affect absorption:

Levothyroxine should be taken on an empty stomach, at least 60 mins before any food/caffeine

Soy and some supplements (e.g. iron, calcium) specifically interfere with the absorption of thyroid hormone and should be taken at least 4 hours away, however it is preferable to avoid soy altogether

In other words, do not wash your levothyroxine down with a soy milk latte or bowl of soy yogurt or tea or dark chocolate(which contains a lot of caffeine)

If you struggle to stick to this, you can take your levothyroxine before bed, as long as it’s at least 2 hours after food and 4 hours after soy/caffeine/other supplements

Some studies show that it’s absorbed better when taken at night and I personally do this and I find I wake up feeling better than if I take it in the morning

Hormonal contraception also hinders the absorption of thyroid hormones so if you are taking the pill or have an IUD or implant there is a good chance this is also contributing to the symptoms you’re experiencing

TSH:

Your TSH should be below 2 as an absolute maximum, but many people need it to be closer to 1 or even well below 1. The higher your dose of levothyroxine, the lower your TSH will go. Ask your doctor to increase your dose of levothyroxine unless it's already around 1. This can vary in patients who've undergone total thyroidectomy.

T4:

Your T4 level will go up as you increase your dose of levothyroxine, because levothyroxine is T4. T4 is one of two thyroid hormones that you no longer produce in your body. Most people will feel their best when their T4 is in the top third of the range (if range is 12–22, your T4 should be >18.5). If it's lower than this, ask for a dose increase.

Levothyroxine dose:

Your dose will usually need to be at least 1.6mcg for every kg of body weight, but you may need more. So this means if you weigh 75kg, your dose should be at least 125mcg (rounded up to nearest dose level). However, I weigh 66kg and my dose of levothyroxine is 150mcg. It's very individual.

T3:

The problem with only testing and monitoring T4 levels, as the NHS does, is that T4 is the inactive form of thyroid hormone. Your body must convert it to the active form, which is called T3. T3 controls every process in your body and when there isn't enough, every process slows down (so you don't digest food properly, have constipation and can't lose weight) and other hormones aren’t produced in sufficient levels (which is why you can feel depression and anxiety and terrible PMS mood swings etc etc).

NHS approach to thyroid treatment:

The NHS claim that if your TSH and T4 are within "normal" range, then you shouldn't experience symptoms. However, sufficient levels of T4 with insufficient levels of T3 will make you feel terrible because T4 doesn’t do anything until it is converted to T3. Most people feel best when their T3 is in the top third of the range (if range is 3.1–6.8, your T3 should be >5.5).

Ferritin, folate, vitamin B12 and vitamin D:

Insufficient T3 leads to low stomach acid, so you do not digest food properly, and when it reaches your intestines, your body can’t absorb nutrients from it fully, leading to low levels of nutrients. This makes things even worse because low vitamin levels, particularly low ferritin, folate, vitamin B12 and vitamin D stop your body from converting T4 to T3. So your TSH and T4 will look "good" but your T3 can be very low if you're not converting T4 to T3 effectively. The longer you continue with insufficient T3, the worse you will feel because your nutrients will continue to get depleted with low T3, because it causes low stomach acid so your T4 to T3 conversion will get even worse over time. So, it's super important to get your vitamin levels optimal. Once your levels are where they need to be, you should feel significantly better.

Testing:

Ferritin should be at least 80, preferably higher

Folate should be top of the lab range

Vitamin B12 should be at least 600

Vitamin D should be at least 100

Supplementation:

Start supplementing them if your test results show this is needed. Use the following supplements:

Ferritin: use ferrous fumarate (easier to digest)

Folate: get methylfolate, not folic acid (easier to absorb)

Vitamin B12

Vitamin D: use a liquid form of vitamin D3 + K2 (easier to absorb)

All of these are available on Amazon. If you have iron-deficiency anaemia (i.e. deficient in ferritin), your doctor can prescribe ferrous fumarate (don't let them give you ferrous sulphate as it's harder to digest). If you have heavy periods (very common with hypothyroidism) then you are very likely to have iron-deficiency anaemia.

DIO2 mutation:

Some people have a gene mutation where they are simply poor converters of T4 to T3 (this is called the DIO2 mutation). If you are a poor converter, it won’t matter how optimal your vitamin levels are, it won’t matter if your TSH and T4 look “good”, because your T3 will not be optimal and it’s the T3 level that really matters as this is the active hormone. In this case, you will need to take T3 as well as T4. T3 is liothyronine.

Problems getting liothyronine on NHS:

This article explains this is more detail. You are unlikely to be able to get liothyronine on NHS. So do everything I pointed out above, and see how that affects you. If you have tried all of this and still feel bad, then it might be worth going to a private endocrinologist or self-medicating and asking to be referred to an NHS endocrinologist. They can oversee you self-medicating and order blood tests etc. I order my liothyronine from the US without a prescription and self-medicate. It's not cheap but it has given me my life back.

Next steps:

Ask for these to be tested asap and then you'll know what you need to do next:

TSH

T4

T3

Full blood count

Ferritin

Folate

Vitamin B12

Vitamin D

96 Replies
shaws profile image
shawsAdministrator

I would state that levothyroxine would be absorbed better if taken on an empty, fasting stomach with one full glass of water - i.e. usually when we awake and wait an hour before eating.

thyr01d profile image
thyr01d in reply to shaws

Hi Shaws, does the glass of water make a difference? I take T3 but am presuming the answer will still be relevant and I just swallow the tablet without water.

helvella profile image
helvellaAdministrator in reply to thyr01d

One USA make of levothyroxine had an appalling record of inconsistent dosing. They completely reformulated it. Trouble was, they regarded disintegration as a major goal - which was fine in itself. But some people found that if they didn't actually swallow the tablets they would swell up in the throat, get stuck, and possibly cause an obstruction.

The USA's FDA advised very strongly that patients take with a glass of water.

This issue was not unique to Levoxyl, it is just that it came to prominence for that make. Several other makes contain similar ingredients and could also get stuck - though I don't think any others were quite so seriously affected.

It also seems sensible that we don't end up with a tablet releasing all its active ingredient in one small area of our stomachs.

thyr01d profile image
thyr01d in reply to helvella

Indeed Helvella, thank-you, I had not thought about the release being all in one small area of the stomach. As I said to Shaws I'm just imagining that maybe for years I could have been feeling a lot better all for the sake of a glass of water!

shaws profile image
shawsAdministrator in reply to thyr01d

If someone swallows a tablet without water, it could stick in one's throat and cause problems. May even choke a person.

Also, and more important, it cannot dissolve in the throat but in the stomach (and I'm not medically qualified)

What we need is a tablet that goes directly into our stomach to dissolve and not to mix with food and that's why we recommend to take tablet on an empty stomach and why a full glass of water is suggested and not 'a sip of water'. We want to have the best effect possible from a tablet. Bear in mind also that the heart and brain have the most T3 receptor cells.

thyr01d profile image
thyr01d in reply to shaws

Thank-you Shaws, I'm just imagining that maybe for years I could have been feeling a lot better all for the sake of a glass of water!

shaws profile image
shawsAdministrator in reply to thyr01d

Don't worry as I had never, ever heard of anything to do with thyroid glands - more's the pity that the majority of doctors I consulted (looking back in time) seemed to know even less i.e. "nothing at all about clinical symptoms" and they had no clue as to where the thyroid gland is on our bodies, nor what an important job it has to do.

Any information I got was that I was very fortunate to find Thyroiduk - long before Healthunlocked forum and I improved from thereon.

Even better I was able to consult two well-know doctors who knew how to restore patients' health - Dr Barry Peatfield and Dr Gordon Skinner - taught when they were beginning their careers and before blood tests and levothyroxine:-

thyroiduk.org/shop/

Dr Barry Peatfield was pursued by the 'authorities' so he resigned his licence as the strain became too much towards the end of his career due to but was till able to Advise patients who consulted with him. There is still his book in TUK:-

thyroiduk.org/product/your-...

I was one of the fortunate ones to consult both and they were 'down to earth, pleasant and very interested in relieving clinical symptoms of patients.

Both have since died and they are very much missed.

Dr Skinner's staff - said that every single day at work was a laugh and were distraught when he died suddenly. They have, however, been collating all of the scientific evidence that they hoped to publish when they had sufficient funds.

Hopefully our younger endocrinologists will be able to use these doctors knowledge to heal rather than keep patients' symptomatic.

The book that 'took my breath away' was the one by Diana Holmes - completely unbelieveable but truthful who also went on to work with Dr Skinner.

Depending on the reason for thyroidectomy their target TSH level may be specific to them. If so, they will have been advised on this by whoever is in charge of their care at the hospital.

Personally I think you need to be very careful giving advice to people when you don't know their medical history and they may not be aware of the consequences of following that advice.

It would in my opinion be safer to point them to an organisation like ThyroidUk then you don't put yourself at risk of causing problems.

Zazbag profile image
Zazbag in reply to bantam12

I understand what you're saying, but all I've told the person to do is have their T3 and vitamin levels checked, and why this is important. The rest is information that every thyroid patient should know but aren't going to find out from the NHS. It's all very general information taken from posts on this forum and helps the person narrow down the cause of persistent symptoms despite normal TSH and/or T4.

bantam12 profile image
bantam12 in reply to Zazbag

So tell them check out the forum then they can do their own research. Your advice on levels, doses, meds, supplements doesn't necessarily follow for everyone.

Zazbag profile image
Zazbag in reply to bantam12

I would rather know the person has the information they need to have a decent understanding of their condition. The information I've included is likely to be the same information someone on here would give them. My reason for posting was to ensure it was accurate, so if it's not could you go into more detail re how my advice does not work for everyone. Thanks.

bantam12 profile image
bantam12 in reply to Zazbag

The levels for vitamins definitely don't work for me, there is no way I could reach the levels you have given as i have an absorption problem and I am unable to metabolise supplements in any form so there is a reason why my levels are low. Joe Blogs you give the info to might not be aware they have an underlying problem. Someone with a low VitD should have further tests before supplementing in case there is a reason for their deficiency i.e. Hyperparathyroidism in which case taking supplements could be dangerous.

Zazbag profile image
Zazbag in reply to bantam12

Okay, I still think it's valid to encourage someone to try to raise their nutrient levels as high as possible. I couldn't get my ferritin higher than 52 at any point even though I was supplementing 420mg ferrous fumarate per day for 6 months. When I added liothyronine, one month later, with no iron supplementation, my ferritin went up to 75, and now it's 125. The highest it's ever been by far. My point is that it was still important for me to try to improve my ferritin before I added liothyronine because it was sub-optimal and I was unwell. Obviously a doctor is responsible for discerning whether a patient has comorbidities, and this patient is in secondary care. I'm just giving the one size fits all version because that's a million times better than their status quo and actually has a chance of helping them. I'm not making guarantees, I'm sharing knowledge that the NHS doesn't.

Zazbag profile image
Zazbag in reply to bantam12

The point of the email is so they don't have to spend 6 months learning it all while they're barely able to function, like I had to.

FancyPants54 profile image
FancyPants54 in reply to Zazbag

I think it's a good idea. I might drop the bit about self-medicating though? Not sure. That's the only part that jars as it might lead to trouble somehow?

helvella profile image
helvellaAdministrator

I try always to be highly specific when referring to anaemia - and type:

iron deficiency or iron deficiency anaemia

OR

folate deficiency or folate deficiency anaemia

etc.

It is extremely common for people to assume that "anaemia" = "iron deficiency". (I know it took a while for me to fully understand.)

I am not aware that methylcobalamin is easier to absorb than hydroxocobalamin or cyanocobalamin. Some people seem poor at tolerating methylcobalamin - especially when injected.

Zazbag profile image
Zazbag in reply to helvella

Agree re types of anaemia. I've had iron and folate deficiency anaemia. And my aunt has pernicious. Was trying to keep it simple though.

helvella profile image
helvellaAdministrator in reply to Zazbag

I certainly agree it is difficult to make the right choice about these things.

I'm never sure what is best. :-)

Zazbag profile image
Zazbag in reply to helvella

The thing I wanted to avoid was making it so complicated that it made the person feel overwhelmed.

helvella profile image
helvellaAdministrator in reply to Zazbag

Knowing who you are writing for makes a big difference to such decisions.

:) It's damn sight more helpful than "just take this little pill once a day" ...and i would have been happy to receive it.

.. it covers all the important stuff , without getting too complicated, it's very balanced and makes it clear everyone is individual in their needs, it's not 'doctor bashing', so it won't put people off, and it makes sure the steps for getting the best out of Levo treatment have been covered before suggesting T3 use .

i'd do more than Email it to likely candidates ... i'd accidentally stick it to notice boards in the Gp's waiting room.

Zazbag profile image
Zazbag in reply to tattybogle

Thanks tatty, really appreciate the positive feedback. I'm thinking of making a video to share on social media. The way the NHS fobs off hypothyroid patients is criminal.

SkiingSailor profile image
SkiingSailor in reply to Zazbag

Not just hypothyroid patients- I was diagnosed with Chronic Kidney Disease at the same time and told to just drink more water - I’d float if I drank any more !! Absolutely useless.

chubi52 profile image
chubi52 in reply to Zazbag

Thanks just reading your post and scribbling down notes, I feel I am better equipped to tackle the gp as I'm fed up with them saying tsh in range, and you are fine.. I'm not I feel like I'm in my 80s as soon as I wake, or get off a seat, surly my life isn't going to be, keep moving so you don't feel pains in knees feet etc.. Maybe I might be able to shift the 3 stone if I got everything correct, so thanks for you input I appreciate it

Zazbag profile image
Zazbag in reply to chubi52

I really hope you can get your health back on track. I lost 7kg when I added liothyronine.

SeasideSusie profile image
SeasideSusieAdministrator in reply to chubi52

chubi52

I see you have been a member for a few weeks but have not posted until now.

If you had asked questions on the forum then experienced patients and Admins would have been happy to tailor their replies specifically to your personal needs once they had the relevant information from you.

We have to remember that there is no "one size fits all" with hypothyroidism, it's a very individual thing.

Gingernut44 profile image
Gingernut44 in reply to Zazbag

I think a video on social media would be a good idea. Just to mention, it’s not only those who have had a total thyroidectomy but also those who have been given RAI and the thyroid is “dead” like mine 😊

Miffie profile image
Miffie in reply to Zazbag

I am amazed you are setting yourself up as an ‘expert’. Are you really sending that stuff to virtual strangers? Doesn’t past medical history have a place to play? I’d never take it upon myself to tell anyone what numbers they need to look at. We are all different and there may be excellent clinical reasons why your opinion of optimal will not suit everyone.

To be honest I’d be very wary of being ‘evangelical’ if like you I only learnt from a forum member that taking liothyroxine lowers fT4 levels less than three weeks ago. This suggests your knowledge is limited at best. How will you cope with questions? Do you know about sufficient about all forms of hypothyroidism?

I see that you have been advised by others to be cautious about giving out medical advice. As usual our fabulous admins SeasideSusie and helvella have given you excellent pointers.

I refer everyone to Thyroid UK and this excellent forum. I’d strongly advise you to do the same.

Zazbag profile image
Zazbag in reply to Miffie

If I was setting myself up as an expert I wouldn't have come here and asked people to verify the information. It's called liothyronine by the way.

Miffie profile image
Miffie in reply to Zazbag

Sincere apologies for the spelling error. Brain working at a different speed to fingers.However I do think that actually sending such information to people suggests you consider yourself more knowledgeable and better able to understand a topic than they are. It strikes me (personally) as very condescending. Why not refer them to Thyroid UK and the forum ? Are you suggesting they are less able to benefit from it than you? Don’t they deserve to see full information not just edited highlights.

You even defend yourself against the helpful comments forum members are giving you. So it makes me wonder why you ever bothered to ask for comments when your reactions suggest only really want positive feedback on your notes.

It seems clear you are set on your personal path, so I will not try to help you avoid pitfalls.

Zazbag profile image
Zazbag in reply to Miffie

My profession is medical copywriting. I don't think I'm an expert, but I get paid to communicate complex medical information to doctors and patients. So perhaps I am somewhat qualified to communicate information I have personally benefited from. You are entitled to your personal opinions and even criticisms and judgements about me, but if you're not going to contribute tangible information that can make the email more accurate and informative then I'm not interested in hearing it. My intention is to help people avoid wasting years of their lives. It's intended as a starting point.

Zazbag profile image
Zazbag in reply to Miffie

I don't need to be an expert to share basic information with people who need it.

Cincolo profile image
Cincolo in reply to Zazbag

Correct! Your information is essentially what I recommend to people also. Unfortunately, in the UK, it is harder for you to get optimal treatment. Free T3 should be easily tested and prescribed if needed, and those vitamin levels should be tested at least annually for anyone with thyroid disease or other autoimmune diseases.

FabBabs profile image
FabBabs in reply to Zazbag

Absolutly,I have saved it ,as my Gp has invited me to write to her..Unfortunatly my thyroid isn't the only issue...I have a ridiculously amount of pain from a spinal trauma too..

Yet I must tackle my thyroid issue with her..I'm64 which doesn't help...They just say stuff like "at your age" etc.etc.

However I was placed on Thyroxine after I cinfided in my Gp I 'd been unable to find a clear space to write some important letters for approx 6 wks...I'm nit even sure if she done a blood test...in fact I dont think she did...she simply said underactive thyroid...I enquired 'but why'? she replied your immune system is destroying it...and gave me thyroxine...Is that not Hashimotos , when caused by immune system ??

Anyway have been taking Thyroxine for 20yrs approx...Then last yr I was told after 6mthly blood test ..The meds are not working ?

and the dose was increased...Following 6mth blood test was the same so dose was increased again to 175mg thyroxine...Last one said it was Ok....Last year...I dont even think I knew what day it was...I regained 5 stone which I had previously lost...relentlesly gaining weight...I became so depressed,I couldn't even brush my hair...The weight is like blubber that I've never seen before...It came on so quick,Like water retention...I've been wonderung if my Gp would help me see a endocrinologist...as apart from the repeat prescription and the increased dose.I've had no support at all...I think its time I got to grips and took some sort of control...I've saved the info you've shared..Thanks for the clarity...I shall use to pen Gp's letter...

Can I ask a little question...I have a calf muscle that is visibly larger than the other leg...I'd assumed it was compensating for my spinal trauma ,My foot used to drag ,..However I read a snippet somewhere or other that ..one swollen calf was due to thyroid issues...have you ever heard such a thing ? Thanks.××

tattybogle profile image
tattybogle in reply to FabBabs

I've never heard of the 'one calf' thing you mention, and i've done quite a lot of reading looking for obscure muscle/skeletal/tendon/joint type effects of hypothyroidism.

Zazbag profile image
Zazbag in reply to tattybogle

I like your posting it in GP surgeries idea though!

tattybogle profile image
tattybogle in reply to Zazbag

if they ever let us back in, that is .. might just have to stick it to the door

Mollyfan profile image
Mollyfan in reply to tattybogle

Just been to my GP for a blood test and the doors were open, no intercom and the staff welcomed me! 🥳🥳

tattybogle profile image
tattybogle in reply to Mollyfan

it was 'tongue in cheek' .. i know they let you in for that stuff :)... but i think it might be quite a while before people are back sitting in the waiting room to see someone for "feeling tired and cold all the time"

Mollyfan profile image
Mollyfan in reply to tattybogle

True, but the situation has changed…. Last week they would not let you in unless you had a valid reason… an existing appointment etc. Today it was open access. So nice!I think they are trying their best on the whole to follow advice/ instructions from NHSE.

SeasideSusie profile image
SeasideSusieAdministrator

Zazbag

Levothyroxine should be taken on an empty stomach, at least 30 mins before any food/caffeine

I think that's what might be in the patient information leaflet. We tend to advise here that it's taken on an empty stomach one hour before or two hours after food, with water only and water only for an hour either side.

Soy and some supplements (e.g. iron, calcium) specifically interfere with the absorption of thyroid hormone and should be taken at least 4 hours away

I would be inclined to quote the British Thyroid Foundation who say

Soya interferes with thyroxine absorption, therefore if you are taking thyroxine you should try to avoid soya. If you wish to take soya, there should be as long a time interval as possible between eating the soya and taking the thyroxine.

TSH:

You might want to include references for what you've said there, SlowDragon and I frequently quote from GP notebook, etc and give the links.

T4: You want your T4 to be in the top third of the range (if range is 12–22, your T4 should be >18.5). If it's lower than this, ask for a dose increase.

This isn't set in stone. I would emphase that we are all different as to where we feel well and need to find our own sweet spot but generally most people feel best when FT4 is in the upper part of it's reference range.

I would make sure you use FT4/Free T4 as this is different from T4 which is usually how Total T4 is shown.

Testing:

Ferritin should be at least 80, preferably higher

Folate should be top of the lab range

Vitamin B12 should be at least 600

Vitamin D should be at least 100

It's important to add units of measurement, especially for B12 and Vit D so quoting 600 for B12 isn't necessarily right. B12 can be pmol/L or pg/ml or ng/L.

Don't forget that B12 can be Total B12 (with the large range) and Active B12 (with the smaller range) so again Active B12 has a very different level to aim for than Total B12.

Vit D can be nmol/L or ng/ml so again needs clarifying.

Ferritin is recommended to be "half way through range", don't forget that ranges can be 13-150 or 15-300 or even 20-400. You could add that "some experts say that for good thyroid function ferritin should be 90-100ng/ml".

Supplementation:

Start supplementing them if your test results show this is needed. Use the following supplements:

Ferritin: use ferrous fumarate (easier to digest)

Folate: get methylfolate, not folic acid (easier to absorb)

Vitamin B12: use methylcobalamin (easier to absorb)

Vitamin D: use a liquid form of vitamin D3 + K2 (easier to absorb)

I certainly wouldn't offer any advice on ferritin, iron supplements require regular monitoring so that toxic levels aren't reached and really should be prescribed. It's a very tricky thing is iron, not really a candidate for self supplementing.

Add that if taking B12 then a B Complex is also needed to balance all the B vitamins. A separate B12 supplement is generally only required when B12 is low. If deficient B12 injections may be needed so encourage testing for that if symptoms of B12 deficiency are present, link to B12deficiency website for list of symptoms.

Point out the different forms of B12, not sure what you mean by "liquid" but there are oil based softgels (oil aids absorption), oral sprays which are absorbed differently as they bypass the stomach, and tablets are the least absorbable.

Don't forget to say why K2 is needed and don't forget to mention that magnesium helps the body convert D3 into it's usable form.

MTHFR mutation:

Some people have a gene mutation where they are simply poor converters of T4 to T3 (this is called the MTHFR mutation)

I'm not going to comment on that because I don't know enough about it but I'm not sure you're correct there. I've always understood it to be something to do with changing the way you metabolize and convert nutrients from diet into active vitamins, minerals, and proteins your body can use. I've not heard anything about it affecting T4 to T3 conversion directly.

Personally I would keep it down to the basics and not go into "Supplementation", "MTHFR mutation" and obtaining liothyronine, why not point them to ThyroidUK and our forum instead.

Zazbag profile image
Zazbag in reply to SeasideSusie

Thanks for your feedback. I avoided getting too technical because I wanted it to be simple and easy to follow. I'm surprised you haven't heard about the MTHFR mutation affecting conversion. People get it tested as a means to get liothyronine on the NHS because it's known to be a cause of poor conversion. Will make the other changes you suggested, once again thanks for reviewing.

tattybogle profile image
tattybogle in reply to Zazbag

i wondered about that too ,.. is MTHFR actually the same thing as the DIO2 deiodinase 'mutant' or whatever the term is ? (mutation , variant , something or other ?)

Zazbag profile image
Zazbag in reply to tattybogle

Aaaaah that's what I was thinking of, it was the DIO2 gene! Will correct this! However I just found a couple of links that say MTHFR does affect conversion, so maybe they both do...?

Poniesrfun profile image
Poniesrfun in reply to Zazbag

MTHFR mutation may affect methylation which can affect B-12, folate and homocysteine levels which may be related to hypothyroidism but is still considered speculative.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Zazbag

People get it tested as a means to get liothyronine on the NHS because it's known to be a cause of poor conversion.

No, that's the DIO2 test and it's not always accepted by the NHS from what I've seen on here.

Zazbag profile image
Zazbag in reply to SeasideSusie

You're right, tattybogle just corrected me and I have amended my original post to reflect that. I understand that some doctors do accept it, not all. But that's going off topic.

Zazbag profile image
Zazbag in reply to SeasideSusie

thyroidproblemsdoctor.com/h....

Zazbag profile image
Zazbag in reply to SeasideSusie

drchelseagronick.com/mthfr-...

Folate - not sure 'top of the range' is right. Excess can cause problems.

Zazbag profile image
Zazbag in reply to nellie237

Please could you let me know a sensible level to aim for? Thanks

nellie237 profile image
nellie237 in reply to Zazbag

That's really difficult. I've seen some ranges on here that just say > about 3. something. My NHS lab range is 3.4 - 12.2ug/L I guess if I was advising a friend, my advice would be around about 10ug/L

Zazbag profile image
Zazbag in reply to nellie237

I've seen the same thing with folate ranges. Thanks, that's helpful ☺️

SeasideSusie profile image
SeasideSusieAdministrator in reply to Zazbag

Please could you let me know a sensible level to aim for? Thanks

You cant give a number to aim for without knowing the range. It's generally said "at least half way through range" then that covers every range with an upper and lower limit. Blue Horizon range was about 8.8-60 and Medichecks 3.9-19.5, now 2.9-14.5 so you can see it's not possible to quote a figure.

When there is just the lower level like >3.9 we tend to suggest to aim for double figures.

Zazbag profile image
Zazbag in reply to SeasideSusie

Thanks!!

I think it's excellent.

Zazbag profile image
Zazbag in reply to JAmanda

Thank you!

Two things I'd suggest.First - the TSH range (and any other range) is not called the "normal range". This is why doctors don't understand the results and so patients are mislead. It is the "reference range" - as are most test ranges. They are worked out by taking the average (not sure if it's the mean or the median) of a set of tests then applying two standard deviations to achieve a range that covers 90% of the population. It's just a mathematically derived range. It says nothing about where any individual, or the population as a whole, starts to become symptomatic.

Secondly - if I'm giving advise I always tell people that I'm not a practitioner of any kind - and that stands here - I am not. I always tell people to join this forum, or read STTM, or Your Thyroid And How To Keep It Healthy. To decide for themselves whether or not they wish to further research what I've told them.

My aim is always to encourage people to take control of their own situation. That's what all of us here have done and that, imho, is the way to achieve the best outcome for ourselves.

helvella profile image
helvellaAdministrator in reply to rosetrees

Zazbag just might find the article below (and the full paper which you can access) interesting and/or useful.

The normal range: it is not normal and it is not a range

1. Martin Brunel Whyte

2. Philip Kelly

Abstract

The NHS ‘Choose Wisely’ campaign places greater emphasis on the clinician-patient dialogue. Patients are often in receipt of their laboratory data and want to know whether they are normal. But what is meant by normal? Comparator data, to a measured value, are colloquially known as the ‘normal range’. It is often assumed that a result outside this limit signals disease and a result within health. However, this range is correctly termed the ‘reference interval’. The clinical risk from a measured value is continuous, not binary. The reference interval provides a point of reference against which to interpret an individual’s results—rather than defining normality itself. This article discusses the theory of normality—and describes that it is relative and situational. The concept of normality being not an absolute state influenced the development of the reference interval. We conclude with suggestions to optimise the use and interpretation of the reference interval, thereby facilitating greater patient understanding.

dx.doi.org/10.1136/postgrad...

pmj.bmj.com/content/94/1117...

Zazbag profile image
Zazbag in reply to rosetrees

Thanks for taking the time to reply. I appreciate the explanation re reference range. Doctors refer to it as the "normal" range though, that's where I heard it. Perhaps they mean normal range in the sense of there being a normal distribution of results from the population.

To address your second point, this person already knows I'm not a doctor. Secondly when you're unwell with chronic fatigue and depression you're hardly best placed to advocate for your own health, particularly when doctors gaslight you. I lost 8 years of my life being misled by doctors. If I can pass on my knowledge and help another person get their life back then what kind of person would I be if I didn't do that? Obviously people can Google stuff for themselves and find those resources, but when you're unwell and your doctor is adamant that it's not because of your thyroid, there's a good chance you might just take their word for it. And the info is super complicated and takes a long time to learn. I wish someone had shared this info with me when I'd been diagnosed as I could have taken control of my situation a lot sooner. So my position is completely unchanged, I'll be sharing this with as many people as I feel need to read it.

rosetrees profile image
rosetrees in reply to Zazbag

I wasn't trying to change your position - sorry if what I said read that way. As you say, if you no-one tells you, you can't know. Just that I always try to encourage people to read about what I've said, so they can decide for themselves whether or not what I've told them is correct.

When doctors say "normal range" it's usually because they don't understand what the ranges are or how they are worked out. They aren't taught and most aren't interested to find out.

Zazbag profile image
Zazbag in reply to rosetrees

Ah okay thanks for clarifying, I'll add a list of valuable resources to the email, like this forum.

helvella profile image
helvellaAdministrator in reply to Zazbag

The term "normal distribution" is a specific concept in statistics - also known as Gaussian distribution.

Many tests are very much not Gaussian - for example, TSH, FT4 and FT3!

There might be a part of the reference interval which looks approximately like a Gaussian distribution - but they are most definitely not further out towards the top and bottom.

(I prefer using the term Gaussian as it is much more obviously specific.)

Doctors absolutely should NEVER use the term normal distribution except in that specific circumstance of referring tot he statistical concept. But I am not in any way suggesting that they don't do so.

Zazbag profile image
Zazbag in reply to helvella

Yep I studied statistics during my chemistry degree (absolutely hated it haha).

‘Perhaps they mean normal range in the sense of there being a normal distribution of results from the population.’

I wish! Lol! Nothing so sophisticated Zazbag. They mainly just read off the lab sheet with no interpretation. In range means normal to most of them. I was under medicated for 6, months left on 25 µg starter dose of Levothyroxine (should have been started on 50 µg with increases following) before I was in mental and physical crisis and then GP got in contact with the local endo who advised the lab range only applies if not medicated and needed to aim for a much lower TSH and gave her a new ‘range’ to aim for.

In my last battle- this time with a junior Doctor, I was told I was normal and they would review in a year (full post floating around on Thyroid UK.). 20 mins later and increase in Levothyroxine secured I finally let her ring off.

I am aiming to make some major life changes in the next year also and hope to dedicate some weeks/months to the study of the thyroid. I am pretty evangelical myself, but having seen the way the GPs are carrying on I’m reminded of that old adage a little knowledge is a very dangerous thing, so currently all I’m prepared to do is tell people about what has happened to me and tell them to join Thyroid UK. I have a doctorate from Biological Sciences, but my area is more Environmental. So with this scientific grounding, I see some major lack in the medical profession especially in the interpretation of data (lab results). One might even say naive. Their interpretation also seems to be reductionist and many do not look at the whole person. “Results say normal - off you go see you next year”.

I’ll be reading up to a level over the next few years and continuing to build and stay current. But need to effect life changes first to achieve this.

If you take all the feedback from the administrators and the elders of this site, I can’t see any problem in producing a leaflet that just starts to address the need to be your own thyroid advocate. I would say when I was hypo and struggling to concentrate the only book that I could manage to get my head around was ‘Be Your Own Thyroid Advocate (when you’re sick and tired of being sick and tired)’ - it was really useful and it started me on the path. Ultimately though Thyroid UK has saved my life. That is not an overstatement. Where I am now is in stark contrast to where I was six months ago.

Thank you all!

Well done you -I wish I had seen this post ages ago it’s simple and covers everything in one post and represents a good summary of all the brilliant advice we get on the forum and I will try and give it to my particularly (slopey shoulders )surgeryCould you private message me re your USA supply as have loads of family there

Zazbag profile image
Zazbag in reply to Legoparis

Thank you! I'll PM you

Really well written and explained it all to me better than anything else I’ve ever read ! I’ve been diagnosed with Hypothyroidism and Chronic Kidney Disease at the same time. No symptoms with either of them so chance blood tests revealed both in Aug last year.

I wish I’d been sent this then. I panicked about the CKD but this forum is fabulous for that as well!

Zazbag profile image
Zazbag in reply to SkiingSailor

Thank you! How were you diagnosed with CKD?

SkiingSailor profile image
SkiingSailor in reply to Zazbag

Just a chance blood test. Raised creatinine levels and low eGFR! Like I say, doctors not bothered and just told new to drink more water! I went vegan and it’s changed my numbers around and I feel so much better !

Zazbag profile image
Zazbag in reply to SkiingSailor

Okay so when I was undermedicated on 100mcg levothyroxine, my serum creatinine gradually went up until it was near the top of the range, and my eGFR went right down near bottom. I was seriously concerned I had early stage CKD. But when I increased my dose of levothyroxine, it improved slightly, and when I added liothyronine, both results went back to values I had back 5+ years ago. Are you sure you're being treated properly for your hypothyroidism?

Zazbag profile image
Zazbag in reply to SkiingSailor

Did they do any other tests, like urine? I also had to have a urine test when I pointed out my deteriorating kidney function because the doctor was concerned about my values too. They found my urine was healthy.

SkiingSailor profile image
SkiingSailor in reply to Zazbag

That’s interesting isn’t it ? My time is fine, but when I looked back at my eGFR it’s been slowly going downhill over at least 15 years and thyroid levels were in range. So o don’t think it’s that ! However I’m sure it doesn’t do any harm to the kidneys to be properly medicated ! Getting full thyroid levels checked tomorrow !

Zazbag profile image
Zazbag in reply to SkiingSailor

My thyroid levels were in range as well. Being undermedicated can affect kidney function.

I would be inclined to tread very carefully here.

Firstly because I’d be very wary of straying towards giving people unsolicited health advice. You might have thought of this but just in case... Although it can be well meaning, it often doesn’t take into account the person’s health history or consider their emotional space to hear it. It’s very different to sharing personal experiences that might ring true for the other person, or to signpost to things you have personally found useful, with permission form the other person. I think we’ve all been on the wrong side of this (the are you depressed try yoga conversation springs to mind)!

Secondly, I think most of us know that thyroid health is not a one size fits all journey and that’s why things like this forum are really helpful - by drawing on the experiences of a vast number of people, we can find a few tidbits which fit what we experience and select a good option for ourselves from multiple suggestions. Eg. There was a recent discussion here around dosing but weight and how there is no perfect formula (although it can be a helpful starting point). Also, different labs use different ranges so “vitamin D at least 100” might not mean much.

With those in mind, I’d be inclined to keep advice super high level and suggest a few areas that someone struggling with their thyroid health might consider (like different medication options, looking at nutrient levels, gene testing, full and proper thyroid testing etc.) and signpost to places like this forum for some general reading. And I’m sure if folks are interested and in the headspace to look into this sort of stuff they ask for more info.

Zazbag profile image
Zazbag in reply to hjh88

In my experience, hypothyroid people I have met who I shared this info with (verbally and therefore in a lot less detail) were extremely appreciative and it helped them get their health back on track. It's not the same as a person telling you to just cheer up when you have depression. I am the last person to give unsolicited advice to people, but since doctors invariably fail to give the advice that is needed (despite being the correct people to be giving the advice) many people are missing out on the knowledge they need to improve their health. I know that if someone had sent me this info when I'd been unwell, I would have been extremely happy to have received it. And obviously, the person has a choice whether to receive it, by giving me their email address and asking me to send it, they are soliciting the advice.

Re lab values and ranges, I understand what you're saying, my reason for including values like those is to emphasise that even though your GP would tell you that ferritin of 32 or vitamin B12 of 350 are "normal", they are not optimal for T4 conversion. I will edit that section to account for other reference ranges.

hjh88 profile image
hjh88 in reply to Zazbag

That’s very different to my experience in that I’ve met a lot of folks with thyroid trouble who just aren’t open to hearing that there might be a different way of doing things. But that’s kind of the point - that people vary in their response and, probably more importantly, vary in their health and experiences. And because of that variety I would just caution that sending something like this might be misconstrued, misunderstood or misused on occasion, even though it’s perfectly right for some and well intentioned from you.

And re: lab results, perhaps if that’s the point you could advise that a GP may suggest that results are normal but this doesn’t equate to optimal for the individual. Since like lab ranges, optimal varies from person to person too and is not a fixed point in a fixed range.

Zazbag profile image
Zazbag in reply to hjh88

That hasn't been my experience. The people I've spoken to have been DESPERATE for help. I'd never go out of my way to force information on someone. I'm more than capable of identifying when someone is receptive and when someone isn't. I feel I have a responsibility to share as much information as I can with people who want to hear it. If they aren't sure about something, they can ask their doctor. It's not like I'm giving the information in a vacuum. They also have internet access. At some point it becomes their responsibility to make intelligent decisions, but without some basic information that isn't necessarily easy to find online (it's scattered across any websites and forum posts) they are going to have a much harder time doing that.

hjh88 profile image
hjh88 in reply to Zazbag

Sorry, it’s in no way my intention for that to be an attack, or to be a comment on your ability to read folks at all. Please don’t take it that way.

I’m merely suggesting a different experience (as we do so often on this forum) and that it might be something you come up against at some point. Of course you might not.

It’s admirable what you’re doing but you’re taking on something huge and complicated here. And by involving yourself you are taking a degree of responsibility in someone else’s health - yes it’s also up to the other person too I agree but giving advice does mean you’re engaged.

All I’m saying really is that you’re taking on a lot here and there could be some challenges in that - and that’s in no way a comment on you.

I think seeing how you (and others here), have written up such comprehensive, helpful information highlights how vital it is for us to know this stuff. There’s something fundamentally wrong with the paucity of time and in depth information doctors and endocrinologists provide at the point of diagnoses. For example, even if they don’t have time (of course NHS is overworked), a patient could be given a much more comprehensive booklet about their condition. A condition they’ll have for life. And if we are able to manage our health better, then we won’t be pulling on other services if we develop complications caused by poor management. This information should be given verbally and in written form as standard.

Very well said !

You raise a good point, I imagine the NHS benefits from our ignorance and hence they avoid giving out more than the most basic information.

Well that is a truly key bit of info you have shared thank you so much.

Hi,I understand what you are hoping to do with this and I think it would have been very helpful to me back in 2006 when I was struggling with strange symptoms.

Possibly it was my inability to take in all the information at the time but it is now clear to me that ALL my health issues were caused by my underactive thyroid; but my GP didn't recognise low B12 and magnesium as reasons for gait, neurological and muscular issues and certainly didn't realise that low vitamin and mineral levels were caused by poor digestion, caused by low stomach acid, caused by an underactive thyroid, which was probably caused by a combination of a standard western diet and a traumatic labour with my first child. (Dr Peatfield talks about childbirth as a having significant traumatic effect upon the function of the thryoid). I was diagnosed as being in the early stages of motor neurone disorder - go home and enjoy your last five years.

I am well now but had to do it essentially without the help of medics, by trial and error, but initially with information from those who had already struggled and found some answers.

I think that as long as you put in the email that this is basic information for the sufferer to use as an introduction for further investigation and fact gathering. That this is your experience and how you found improved health and that you are not a medical person and that we are all different.

I think also highlight the impact that the lowering of nutrient levels - often over many years - has on a person on every level, physical, emotional and neurological. That these low levels of basic vits and mins can look like other very dangerous diseases and cause sufferers to have treatments which are damaging. It is possible to have tests which will show if you have nutritional deficits and how to correct them.

Without information we can't effect any change and I think you are trying to do something which is helpful but be careful to state that this is your experience gained from trying to help your own situation.

Best wishes

Finola

Hi zazbag. ❤️

We I wish I'd had something like this before and after my thyroidectomy, yes I to think it should be put up in GPS surgerys even better put in front of them, yes everyone is diffrent in how we absorb, how we react to thyroid replacement, my surgery continually forced me to take T4 eventho I had absorbtion issues my bloods were awful, turns out the T4 had lactose in.. I'm lactose intolerant, now on T3 and doing OK thyroid wise... But have been diagnosed with primary hyperparathiyroidism now... 🤷‍♀️😤😤😤

This is excellent and will share

Great info!

I would add to take methylcobalamin B12 (better absorbed). I usually recommend a good B complex that has that type of B12, so other B vitamins and folate can be included.

You missed my favorite-magnesium! You should take it (such as glycinate) with D3 and K2. It is required to help process the D3. Without it your body will take the Magnesium from your body store causing deficiency. Citrate and oxide are for constipation and shouldn't be taken with the D3, as they won't fix deficiency problems.

Tests need to be Free T3 and Free T4 (I know it can be harder to find doctors in the UK to test those-private doctors seem to be more in tune with the need for those tests).

Dosing for thyroid medication is not based on weight. Everyone's thyroid is functioning at a different level-some may have an atrophied thyroid that needs more than someone who's hasn't for example. Even if it has been removed, people need different doses and to alter those doses over time, regardless of weight. Low D and ferritin/iron (a full iron panel should also be completed-some can have a decent ferritin but low total iron) can affect the function of the thyroid, affecting the dose required also.

30 minutes is also a sufficient waiting time after taking medication.

Optimal vitamin levels (especially D, B12, and ferritin/iron) are very important in relieving some symptoms. I am not aware of the levels in the UK but usually just tell people to keep them in the upper 1/4 range. In the US it's usually 800 for B12, 75 for D, and 90 for ferritin using the STTM website.

And I missed that Free T4 will be more around midrange when optimal (slightly lower if on NDT or taking T3).

Zazbag profile image
Zazbag in reply to Cincolo

This is funny because some of the things you've said are what I originally wrote but changed based on other comments. Thanks for the informative post, will add!

Very interesting and very helpful. Unless you are a doctor you might want to explain how you know all this and say this is not medical advice and caveat everything

Zazbag profile image
Zazbag in reply to Hypohappy

Thanks! The person I sent it to yesterday knows I'm not a doctor 🙂

Thyroid cancer is another reason for a lower than 1 TSH ..... sadly people are as complicated as thyroid disease and one size does not fit all but I really do wish I was directed to this site prior to my thyroidectomy my battle may have looked very different.

Hi Zazbag ~I never like to give "specifics" when referring to suggested levels for anything. Everyone is individual and what works for one (say T4 in the high end of the range) might put another in the hospital. Levels – of just about anything – are always "relative" to the individual, the laboratory reference range and in comparison to previous levels.

I totally understand your desire to kind of pull stuff together in one place in plain language for easy reference for someone. I feel the same which is why I began a blog for thyroid cancer patients so I could give tham a url with a personal note instead of writing the same thing over and over. This also helps me provide information in usable chunks - much like the moderators here do.

People can have difficulty absorbing all that information in one sitting - just the testing part can be overwhelming for starters. On one hand, writing, as you did, can reinforce your own knowledge - but sharing with a newbie can often be better in small doses, accompanied with a big dose of TLC.

Thank you for writing this... wish I had all the info in one place 3 years ago when I had total thyroidectomy due to Cancer... still struggling now to get right dose and feel constantly poorly...do have other conditions too which endos blame everything on! GPs especially just don’t seem to get it... Had bloods check there few weeks ago... only tested TSH which was 7.4... told me it was borderline even though hospital like to keep it really low (if not was told by Endo cancer could return) Emailed hospital few times to tell them but not interested just ignored me... waiting for scheduled 4 Monthly hospital appointment tomorrow! I have picked lots of kind helpful info up on this site over the last 2 years but to see it all wrote down like this is brilliant for people like me who feel dreadful and awful brain fog! Thank you!!

I would add to the testing bit that you should get levels of T3 and reverseT3 tested. You could have T4 and T3 at the optimum ratio but if Reverse T3 is high this could explain lots of hypo symptoms

Zazbag profile image
Zazbag in reply to lolabombola

Hi thanks for your reply. The general consensus on here is that rT3 is not useful because the result alone doesn't indicate the cause.

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