Low T3: Recently had private thyroid tests done... - Thyroid UK

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Low T3

Onedge profile image

Recently had private thyroid tests done and was waiting to speak to my Endocrinologist. Have done that now and just wondering if the answers he gave me were accurate.

For example my T3 came back 3.6 ( range 3.1- 6.8 pmol/L) This was 4.7 before treatment.

I’ve been on T4 for three years and it is now 16.5 pmol/L (12-22). Gone up from 11 before I started.

My TSH has gone down from 5.4 to 1 mi U/L ( 0.27-4.2)

I thought the lower the TSH the higher the T3 and T4 would be.

I’m now hotter and sweating etc etc and still not functioning correctly so I asked if I could have T3 supplements to see if that helps. He said ‘we can’t higher your T3 because it will be worse for you to sleep ( I’m an insomniac). Is this correct? Would my anxiety levels and sleeping improve with a higher T3 or a lower T3??

Also, my ferritin and vit b12 we’re low so I’m seeing my doctor to ask whether improving these would help me. Can anybody advise me on what questions to ask my doctor? Thanks

80 Replies

I thought the lower the TSH the higher the T3 and T4 would be.

Well, actually, it's the other way round: the higher your FT3/4, the lower your TSH. TSH is a pituitary hormone. When the pituitary senses that there's not enough thyroid hormone in the blood, it produces more TSH - Thyroid Stimulating Hormone - to stimulate the thyroid to make more hormone. Then, the pituitary reduces TSH production as the thyroid hormone levels rise. Trouble is, it doesn't distinguish between the T4 and the T3, and your FT4 has gone up a bit. Which is why the TSH has gone down. But, once you're taking thyroid hormone replacement (levo, etc.) the feed back loop doesn't work so well.

He said ‘we can’t higher your T3 because it will be worse for you to sleep ( I’m an insomniac). Is this correct?

I very much doubt that that would be true. I think he's just making excuses. A lot of people find they sleep better and better as their FT3 rises. Maybe if it were very, very high, over-range, it might make your sleep worse. But, the level yours is at is probably the reason for your insomnia. With hormones, we need just the right amount - not too much but certainly not too little. The medical community seems to have difficulty distinguishing between too much and none at all! It's all or nothing for them, and they don't seem to understand what optimal means.

Also, my ferritin and vit b12 we’re low so I’m seeing my doctor to ask whether improving these would help me.

The odds that your doctor would know anything about that are pretty low. They do not study nutrition in med school, and don't know anything more about it than the average man in the street - possibly less! But, if you post the exact numbers - results and ranges - someone on here will definitely be able to tell you. :)

Hi Onedge,

I can only speak from personal experience but I got the best night's sleep I had had in years when I started taking T3. Your t3 looks very low to me, but as your T4 is also nowhere near the top of the range you might benefit from an increase in Levothyroxine, you didn't mention how much you were taking at present.

If you can raise your T3 on levo alone it is a much simpler way of treating hypothyroidism.

Have you had vitamins/ minearals tested recently ? The key ones are B12, Vit D, ferritin and folate, having optimal ones can have a big effect on how are thyroid hormones are utilised and also how we feel.

If it's any consolation, I still struggle in both hot and/or cold weather and I am very well medicated at the moment. :)

SlowDragon profile image
SlowDragonAdministrator

Low Ft3 frequently causes poor sleep

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Ft4 is only 45% through range so this shows you are under medicated

Most people when adequately treated will have Ft4 at least 60% through range, often higher

Ft3 obviously far far too low at just 13% through range

When adequately treated most people will have Ft3 at least 50-60% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

When under medicated and/or with Hashimoto’s, low vitamin levels are EXTREMELY common

When were vitamin D, folate, ferritin and B12 last tested

EXACTLY how low are ferritin and B12

What about Vitamin D and folate results

We must have GOOD VITAMIN levels on levothyroxine for good conversion of Ft4 to Ft3

What vitamin supplements are you currently taking

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Most endocrinologists are diabetes specialists and useless for thyroid

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts you appear to have negative thyroid antibodies for Hashimoto’s

However 20% of Hashimoto’s patients never have high thyroid antibodies

Have you had ultrasound scan of thyroid

If not recommend getting that done. Privately if necessary- £150

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Are you on strictly gluten free diet or tried it?

Same question for dairy free or lactose free diet

Recommend getting Dio2 gene test done as well

thyroiduk.org/deiodinase-2-...

Onedge profile image
Onedge in reply to SlowDragon

I have sent an email to Medichecks to ask if I can have a full iron panel test done. Also at the same time a D102 and MTHFR gene tests. I want to arrange the blood draw at my local hospital. Medichecks are closed today so I hope they can respond to my email ASAP. I want this done before I start my iron tablets prescribed by doctor as you recommend

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

If GP has prescribed iron tablets, suggest you get started on them

Consider full iron panel test and END of iron prescription….see if improved enough

Dio2 gene test is saliva test done by Regenerus

You just spit into a small pot

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

MTHFR is a DNA test

Probably no point testing at this stage

shinecharity.org.uk/spina-b...

Onedge profile image
Onedge in reply to SlowDragon

Hi Slowdragon,Just paid for iron panel through medichecks today and will definitely do the Di02 saliva test next. As you suggest I’ll wait for the MTHFR test. As soon as I get the results I’ll post them for your advise. I’m so hoping that the increase in iron will help my rls and subsequently sort my insomnia. Melatonin supplements (3 nights) so far absolutely no effect!!

Then next month the doctor should start me on vit b12 which with all four vitamins higher I should get my T3 up. I just hope I can absorb the vitamins as I asked the doctor for injections due to poor intestinal absorption/ conversion and the doctor said tablets are as good. I suppose I’ve just got to wait for a couple of months and get retested. Thanks for all your advise

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

Many/most B12 tablets are sublingual, and dissolve slowly under the tongue to avoid poor gut absorption

FT3 3.6 ( range 3.1- 6.8 pmol/L)

Ft4 16.5 pmol/L (12-22).

Ft4 is only 45% through range

Ft3 terrible at 13.5% through range

Remind me

How much levothyroxine are you currently taking

Did you get dose increase in levothyroxine after these results

There’s loads of room for dose increase in levothyroxine

Many/most on just levothyroxine need Ft4 at least 60-70% through range

Currently your conversion is terrible

It might improve as vitamins improve and dose levothyroxine is increased

But if not,you’re likely to need addition of small doses of T3 prescribed alongside levothyroxine

T3 frequently improves sleep

But we need “all our ducks 🦆 in a row” first

Optimal vitamin levels

Fine tune levothyroxine

Always get same brand levothyroxine at each prescription

Look at testing cortisol

Strictly gluten free diet and/or dairy free diet frequently helps or is essential

Just seen this reply re Lansoprazole

I was put on Lansaprozole fir aGERD and GORD ten years ago. I have terrible trouble with hyperventilating and burping issues when my pain levels or anxiety rises. I have tried to reduce this down recently but this is probably why my stomach acid is low.

No wonder your vitamins are terrible and conversion poor

Most hypothyroid patients have LOW stomach acid

Getting thyroid levels correct, all four vitamins optimal and gluten free, likely to be able to ween off PPI

Onedge profile image
Onedge in reply to SlowDragon

Yes that’s my next step to reduce ppi. I mentioned increase T4 and introduction of t3 to endocrinologist but he said t3 low is best for me! I disagree and told my doctor that it’s not right for me obviously. But like suggested on this forum that I need to get the vitamin supplements down then I’m due for a another blood test in January but I might go privately before that. I’m also thinking of testing my magnesium and zinc levels too? What do you think??

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

likely need a different endocrinologist

Is this one NHS or private

Many, many people find adding T3 IMPROVES sleep

Roughly where in U.K. are you

Onedge profile image
Onedge in reply to SlowDragon

East Sussex. NHS. I think I need a thyroid specialist as he seems to be more a diabetic specialist. Although he agreed that my kidneys are deteriorating he won’t do anything until they functioning at 30%. I’ve already told the doctor that I would like them tested next June and if they have deteriorated further I’m going to go privately as I want to know why. There’s so much going on with me at the moment. My insomnia is the worse and I need to try anything to improve this. T3 I hope will help! I’m sure all my ailments stem from one disorder!!!

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

Poor kidney function is directly linked to low Ft3

ncbi.nlm.nih.gov/pmc/articl...

academic.oup.com/ndt/articl...

ncbi.nlm.nih.gov/pmc/articl...

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologists

tukadmin@thyroiduk.org

Looking for Ft3 at least 60% through range when adequately treated

Onedge profile image
Onedge in reply to SlowDragon

That’s so very interesting as I’m on CKD stage 3 ! This might be the answer to my question ‘why are my kidneys deteriorating’? Low T3 might be a marker to understand why CKD getting worse. I think I definitely need to improve my t3 and discuss this with my doctor or a different specialist Thank you for all the articles. It’s amazing really that you yourself believe this is connected and you feel your body isn’t well and functioning properly but doctors/ specialists don’t seem to answer the questions or know about the possible links even if you mention both these ailments to them during the same consultation!! It’s exasperating. Thank goodness for you and this forum for help and advise

Onedge profile image
Onedge in reply to SlowDragon

Yes as a result of my hair analysis I can only eat rye bread, I’m allergic to dairy and other breads so have been on oat milk for about two years. I have decaf tea. I’m allergic to gluten and some gluten- free too. It’s difficult to eat properly but I just eat lots of veg and fruit. I eat fish once a week, sausage and chicken ( I’m quite small and was very underweight until They raised my Levothyroxine last time). After fish ( lots Im allergic to eg Tuna ) I’m in terrible pain and discomfort afterwards but I put up with as it’s omega oils that helps thyroid. I’m only on 50 Levothyroxine. I take two doses of 25 as one morning dose didn’t get me through the day. Feel awful by 1pm and by 9pm my RLS gets uncontrollable and I get so agitated, heart palpitations, leg cramps, headaches, feel sick, brain goes into hyperdrive that I can’t get to sleep. It’s shitty! Endocrinologist doesn’t know what he’s on about’ low t3 is good for me’….

Raising my T4 and t3 will be my next step after vitb12 ( I need this for possible pernicious anaemia as mentioned by my previous rheumatologist who was studying my blood and put me on folate. He left before further bone marrow testing and I was left in the lurch. Also bad neurological and cognitive problems that I think vit b12 Will help. One step at a time but with your help and others on this forum I’m getting the support I need to push forward and get help. Well fingers crossed 🤞

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

How much do you weigh in kilo approx

Even if extremely petite, 50mcg is highly unlikely high enough dose

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo of your weight

Onedge profile image
Onedge in reply to SlowDragon

I was 48 kilos when I started on 25 but when they doubled the dose I’ve started putting on weight. Cellulite really. Although I find T4 supplements have been amazing for me and I’m now my body temperature has increased, my sickness and headaches have decreased, my mobility has improved etc my weight continues to increase. I must have put on 5 kilos by now. I seem to be opposite to what it says on the internet - when I’m more hypo I’m skin and bones and when I’m more hyper I’m fatter! This has been happening throughout my life but I didn’t know it was thyroid disorder until 3 years ago when the blood tests proved it. Is this reverse thyroid disorder I wonder?!?! My cousin has this but she is rich and has been seen by Harley street doctors and has Lupus too! As I mentioned before my endocrinologist won’t increase T4 or supplement T3 because he thinks a low T3 ‘ is good for me’!!!!

Onedge profile image
Onedge in reply to SlowDragon

Hi Slowdragon, I’ve just had my iron panel back and I’m extremely disappointed ☹️

There was supposed to be four tests but two sample errors!!

Im very confused as my ferritin was last measured at 31 ug/l and now it’s at 58 ( 13-150) but my iron is high at 21.3 implique/l ( 6.6-26). Thé TIBC AND TRANSFERRIN SATURATION have sample error against them.

Why is my iron high and ferritin lower?

Im not sure if I need iron tablets or not? I know you are more thyroid specialist and I was wondering if iron is linked to thyroid in any way.

Can you please advise me on whether to take iron supplements that doctor gave me??

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

I will flag SeasideSusie and humanbean

I suspect that no you shouldn’t supplement, or you would be risking high iron levels

Just carry on with iron rich foods in diet

Onedge profile image
Onedge in reply to SlowDragon

Yes I’ve been having lots of fish and broccoli etc. Why is iron high and ferritin low do you think 🤔

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

Foods high in iron

Red meat, liver, duck, apricot, cashew, almonds etc etc

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

RLS is frequently low iron and/or low magnesium

If not eating red meat or liver likely low ferritin

Not sure that oat milk is certified gluten free?

Certified GF Oats are only gluten free if grown on fields that never had other grains and must be milled in GF mill

Being lactose intolerant often means you need slightly higher dose levothyroxine than typical

Onedge profile image
Onedge in reply to SlowDragon

It is gluten free in US but it is low gluten here in UK. I only use it in my tea a few times a day and drink it with food. It still can upset me but it’s much better than cow milk for me. I have cut down teas to three or fours times in the day ( two decaf and never drink after 4pm) and now substitute with other drinks and water when I can. I’m typically British and love a cuppa. It’s weighing up my life choices and just sometimes from being so tough on myself I feel the need to just allow myself a little treat that being a cuppa!!

Onedge profile image
Onedge in reply to Onedge

Sorry but having a bad time on my melatonin treatment. Still awake through night but now having to endure headaches, sickness throughout day and night and my fibromyalgia has started flaring. I just feel heavy and lethargic!! My brain is hurting and I’m feeling fed up of trying things and my body not responding. Sorry about going on about a cuppa yesterday. I really thought it was gluten free and just thought’ please I need to have a worry free cuppa’! I’m just going through a bad time atm. Sorry! Ps did my iron panel test yesterday morning and felt really faint!!

Hi Slowdragon, knittywitty, and Greygoose,

I had private blood tests via Thiva in June.

My Active b12 was 59 pmol/L ( 118-701)

My ferritin 30 ug/L (30-370)

My folate 45 nmol/l ( 6.12-38.52) been taking supplements since diagnosed with low folate in 2016

Vit d 125nmol/l (59-200) been taking supplements since 2000 when diagnosed with rickets, osteoporosis and osteomyalcia. Been on two tablets a day since then. Now I’ve had ferritin and vit b12 done privately and now they are low.

I know I’m not well, functioning correctly or sleeping at all and I need help.

I also had TpoAB and TG AB. Both present but in low amounts. I have horrible four day flares every month or so and my whole system is in turmoil. I’m sick, violent migraines and all I can do is lie in tremendous pain for four days and nights. This is not right.

I’ve also had my hair analysed and I’m allergic to all types of bread except rye. All dairy and gluten and gluten free foodstuffs. It’s horrendous!

I’ve been on caffeine, gluten and dairy free for years as I didn’t need a test to tell me that I was suffering each day.

My endocrinologist has just said ask your doctor for ferritin and vit b12 supplements to help with restless legs, neurological disorder and perhaps it might help sleep.

I’m seeing my doctor this week and will ask him for these supplements to try but I don’t think he’s going to give me t3 because the endocrinologist has sent a letter to say keep t3 low as it will give rise to more hot flushes, osteoporosis and cardiac toxicity and make your sleeping worse( it can’t get worse!)

The private hair test showed that I have low Amylase, Peptin and lactose(?) which shows I can’t break down fats, proteins and carbohydrates. I think this is why I’m so low on everything that has been tested so far!

I would like to test my D102 gene as you recommend. I’ve also got no testosterone and recent blood test shows my kidneys are deteriorating too.

Problem is what do I say to my doctor? What is the most urgent issue to address? My husband says it’s my insomnia. I’m so confused

Please can you advise me on any questions? Thank you

greygoose profile image
greygoose in reply to Onedge

My Active b12 was 59 pmol/L ( 118-701)

My ferritin 30 ug/L (30-370)

Both much too low, as you know. And, it's not supplements you need, it's more investigation as to why they are so low. Your doctor should be testing you for Pernicious Anemia because of that low B12. And, also doing a full iron panel to find out why your ferritin is so low, and if you have iron anemia. Do not take any supplements until all that has been done.

My folate 45 nmol/l ( 6.12-38.52) been taking supplements since diagnosed with low folate in 2016

Just taking one B vit in isolation is not going to help you much. The Bs all work together, so need to be kept balanced. But, good job you didn't take B12 or a B complex, because then we wouldn't know your real B12 level! You see what I mean when I say that doctors know nothing about nutrients?

I think you should probably stop the folate until you've been tested for Pernicious Anemia, but I'm not sure on that point.

Vit d 125nmol/l (59-200) been taking supplements since 2000 when diagnosed with rickets, osteoporosis and osteomyalcia. Been on two tablets a day since then.

So, did anyone tell you that if you're taking vit D, you should also be taking magnesium and vit K2-MK7? Vit D and magnesium work together, and vit D therefore lowers magnesium levels. You're probably quite deficient by now.

Taking vit D, increases your absorption of calcium from food. The K2 makes sure the extra calcium goes into the bones and teeth and doesn't build up in the soft tissues/arteries/kidneys, causing problems.

My endocrinologist has just said ask your doctor for ferritin and vit b12 supplements

Just goes to show how much he knows!

endocrinologist has sent a letter to say keep t3 low as it will give rise to more hot flushes, osteoporosis and cardiac toxicity

Just taking a reasonable amount of T3 to raise your levels to optimum, is not going to have any effect on your bones or heart. They both need good levels of T3 to keep them healthy. So, he doesn't know much about thyroid hormones, either does he - bet he's a diabetes specialist! He's not going to make you well, he doesn't have the knowledge to do so. On the other hand, he could make you a hell of a lot sicker!

The private hair test showed that I have low Amylase, Peptin and lactose(?) which shows I can’t break down fats, proteins and carbohydrates. I think this is why I’m so low on everything that has been tested so far!

More likely to be low stomach acid due to low T3 and low B12! Raise your stomach acid and you will digest better, absorb nutrients better and probably solve a lot of your problems.

I’ve also got no testosterone

Hypos often have low testosterone. But, you're not taking statins, are you?

Problem is what do I say to my doctor? What is the most urgent issue to address?

First of all, you need an increase in levo. Your FT4 is too low. Most hypos need it up in the top third of the range.

Secondly, you need the further testing that I mentioned: for Pernicious Anemia, and an iron panel.

When the testing has been done, your doctor should know better how to help you raise your levels - no point in discussing that until the testing has been done. But, optimising your nutrients could help your conversion and then there will be no need to ask for T3

One step at a time is the rule. Accomplish the first two steps and we'll all have a better understanding of your problem. But, in the meantime, you could work on raising your stomach acid. Have a look at this artice:

healthygut.com/3-tests-for-...

:)

Onedge profile image
Onedge in reply to greygoose

Thank you greygoose for giving me so much beneficial advise and links to research further. I will go to my doctor with a better understanding of what’s going wrong with me. I’m an introvert and find talking to people in authority quite difficult and that’s why I’m in this mess as I take their word for it although I don’t believe them as I suffer so much and go away quietly . This forum is so essential for people like me as I feel encouraged to speak up now armed with your knowledge and support. Thank you and I’ll report back after Thursday to tell you what transpires.

greygoose profile image
greygoose in reply to Onedge

Most hypos are introverts because low self-esteem is a hypo symptom - it sucks your self-esteem right out of you! This makes it easier for people to bully and/or ignore you. And I'm pretty sure doctors know this and take advantage of it to gaslight and under-treat you. Or else they subconciously sense it. We have to learn to stand up for ourselves if things are every going to improve. :)

Onedge profile image
Onedge in reply to greygoose

I have been bullied all my life. I just find it hard to stand up fir myself. I have read many articles now that support what I feel but specialists just put it down to anxiety all the time and mention me seeing psychiatrist or having cat. Which I said I didn’t need and ended up going forward two year and taking lots of tablets that I said didn’t work. It’s been a very tough 12 years but I’m so grateful to you and others on the forum to give me confidence in what I know is correct and right fir my symptoms. Thank you so much fir helping

greygoose profile image
greygoose in reply to Onedge

Glad to be of help. :) Good luck with confronting your doctor. Let us know how you get on.

Onedge profile image
Onedge in reply to greygoose

Thank you 😊 I’ll text on Friday and let you know

greygoose profile image
greygoose in reply to Onedge

You're welcome. :)

Onedge profile image
Onedge in reply to greygoose

Hi greygoose,I’ve just got back from seeing the doctor. I was armed with my list of questions from all your advise and what to ask for. He was good and addressed the insomnia and restlessness ( my main problem)by melatonin prescription . Will see how that goes four to eight weeks. Prescribed iron tablets to take straight away as my iron was low - no mention of an iron panel test but said let’s see if that helps. Vitamin B12 after this because if I had both together he wouldn’t know what’s doing what. He will monitor the kidney. So all turned out quite well. Will let you know in a month’s time when I see him again, if I have any improvement. Then I’ll address my concern over my thyroid levels as I’m sure they are not right and are contributing to my many problems as well.

Thanks for all your help

Reply

(0)

greygoose profile image
greygoose in reply to Onedge

Well, sorry to disappoint you, but I disagree. He should do an iron panel before giving you supplements. And, there's absolutely no reason why he can't test for Pernicious Anemia and do an iron panel at the same time. He's just fobbing you off. And, if he didn't mention doing these things, you should have asked. After all, your question on here was: what should I ask my doctor. Sorry, if you think I'm reading you the riot act, not my intention, I'm just so frustrated by these clueless doctors that mess up people's health when it would be so easy to help them!

Onedge profile image
Onedge in reply to greygoose

Hi Greygoose,I was just so relieved that he was giving me melatonin and iron tablets with hopefully vitamin b12 to follow that I simply forgot to mention an iron panel. Reading your post now I feel upset with myself. My anxiety was getting high and I was having difficulty with my concentration. Why didn’t he just offer it. I thought it was a successful outcome but now I’m worried about taking the iron before getting tested for pernicious anemia. Will the iron tablets mask that? I thought taking them would just make me better. What do I do now??

greygoose profile image
greygoose in reply to Onedge

The iron tablets won't affect B12 status. The problem is, if you have iron anemia, they might not do much to raise your ferritin level. You might need an iron infusion, or something - I'm really not an expert on iron, it's very complicated. As to why your doctor didn't offer an iron panel, he probably thinks your iron level is just fine because it's not actually under-range! Doctors tend to know very little about nutrients.

Did you mention testing for Pernicious Anemia? Because doubtful he'll do that either if you don't actually ask for it. We have to push them all the way.

Always write down a list of things you want to say/ask. It helps relieve the stress and confusion. :)

Onedge profile image
Onedge in reply to greygoose

Yes doctor said iron needed to be upped and that’s why I suffer a lot with rls. Also, vit b12 supplements at 1000mg but try iron first so we are not confused as to what supplement is doing what. I did go in with all my questions on a page but my anxiety rises and I quickly get confused and mess things up. There were a lot of issues to discuss in such a short time.

I started my Melatonin last night and had the worse night. Felt like an arrow through the eye and an hatchet through my left side of brain. My left side of face dropped and I was really scared. I will try again tonight. I just need some sleep.

I think the long term for me as you all suggest is getting all my vitamins ( folate, vit d, vit b12, iron) upped and then this will hopefully help stabilise my thyroid levels and induce sleep

I’m going to mention iron panel if my ferritin doesn’t improve and I’m going to mention pernicious anemia testing in a months time when u see him next.

I want to get my DIO2 and my Mthyr gene tested. Can I ask the doctor to arrange this and I’ll pay privately for it as I’m not very good at doing the home tests??

greygoose profile image
greygoose in reply to Onedge

Yes doctor said iron needed to be upped and that’s why I suffer a lot with rls. Also, vit b12 supplements at 1000mg but try iron first so we are not confused as to what supplement is doing what.

Yes, all that is good and fine, and he's right in what he's saying. BUT he's skipping the most essential step - i.e. further testing to find out why. The testing should be done BEFORE starting the supplements. Supplementing now will skew the results of any future tests and make it more difficult for you to get the right treatment.

I want to get my DIO2 and my Mthyr gene tested. Can I ask the doctor to arrange this and I’ll pay privately for it as I’m not very good at doing the home tests??

I really don't know, I'm afraid. And, I very much doubt your GP will have even heard of such tests, given he doesn't even know to test for anemia before supplementing.

Onedge profile image
Onedge in reply to greygoose

Hi greygoose,I don’t take statins.

I was put on Lansaprozole fir aGERD and GORD ten years ago. I have terrible trouble with hyperventilating and burping issues when my pain levels or anxiety rises. I have tried to reduce this down recently but this is probably why my stomach acid is low.

greygoose profile image
greygoose in reply to Onedge

Your stomach acid is low because you are hypo with very, very low B12. Lansaprozole has just made the problem worse.

Onedge profile image
Onedge in reply to greygoose

That’s what I thought! I just wish the doctors would just do an extensive blood testing before giving meds. I always ask ‘why’? Is this happening? To the endocrinologist as well and they just can’t answer. I would pay fir the tests and I tell them that. I also said that I’m willing to wait until next June to test my kidney but if it’s deteriorated more then I paying fir a specialist as I want to know why it’s deteriorating and what I can do to help myself. I just get a reply’ you won’t need dialysis until you are 150’ if you stay at this level. Not why have I deteriorated by 10% in 3 years. They are just not interested at all. It’s unbelievable and exasperating!

greygoose profile image
greygoose in reply to Onedge

Yup, it is. But, one thing is certain, they won't do tests for things they don't understand. If they can't strut around and impress by 'interpreting' the results, they won't test for it. One of the many reasons they don't want to test T3.

Onedge profile image
Onedge in reply to greygoose

Hi Greygoose,

I have sent an email to Medichecks to ask if I can have a full iron panel test done. Also at the same time a D102 and MTHFR gene tests. I want to arrange the blood draw at my local hospital. Medichecks are closed today so I hope they can respond to my email ASAP. I want this done before I start my iron tablets prescribed by doctor as you recommend. I really hope this can be done and perhaps the results can tell me why I’m always having low results and conversely why I’m poorly!

greygoose profile image
greygoose in reply to Onedge

OK, but this is really something your GP should be doing. :(

Onedge profile image
Onedge in reply to greygoose

Yes I agree. I’ve gone through medichecks - 4 iron panels. I will do this and get the result before I start the iron tablets. I’m just hoping that the iron tablets will help my rls and hence improve my sleep. The latter is chronic and so far ( 3 nights ) on melatonin has had ‘diddly squat’ effect!!

greygoose profile image
greygoose in reply to Onedge

Well, do post the results of the iron panel on here, so that those that know about iron can comment. :)

Onedge profile image
Onedge in reply to greygoose

Hi Greygoose, I’ve just had my iron panel back and I’m extremely disappointed ☹️

There was supposed to be four tests but two sample errors!!

Im very confused as my ferritin was last measured at 31 ug/l and now it’s at 58 ( 13-150) but my iron is high at 21.3 implique/l ( 6.6-26). Thé TIBC AND TRANSFERRIN SATURATION have sample error against them.

Why is my iron high and ferritin lower?

Im not sure if I need iron tablets or not? I know you are more thyroid specialist and I was wondering if iron is linked to thyroid in any way.

Can you please advise me on whether to take iron supplements that doctor gave me??

greygoose profile image
greygoose in reply to Onedge

You can't expect your iron and ferritin to be equal, anymore than you can always expect your bank account and the money in your pocket to balance. Ferritin is the protein that stores iron, so the body is taking it out and putting it back in again all the time. Pretty sure doctors don't know that. Last doctor I saw told me that ferritin was just another name for iron! lol

So, if your iron is high, probably best not to take the iron tablets, just hang on to them in case you need them at a future date. But, as you said, I'm not an expert. I would suggest you start a new thread, giving those results, then the people that know more about iron will advise you. :)

Onedge profile image
Onedge in reply to greygoose

Thanks greygoose. I’ll do that

greygoose profile image
greygoose in reply to Onedge

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

So as you’re gluten and dairy intolerant you will definitely have autoimmune thyroid disease also called Hashimoto’s

Likely Dio2 positive

Osteoporosis and insomnia both can be caused by LOW FT3

Your under medicated and poor conversion

Almost everyone who’s gluten intolerant/dairy intolerant has poor conversion and will need T3 prescribed alongside levothyroxine

All four vitamins need to be optimal

Ferritin at least half way through range (usually that’s 70 minimum)

GP MUST do full iron panel test for anaemia with ferritin at 30

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Alternatively do full iron panel test for anaemia yourself via Medichecks

Are you vegetarian or vegan

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Why low ferritin needs improving

healthunlocked.com/thyroidu...

Iron/ferritin and restless legs

healthunlocked.com/thyroidu...

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

Onedge profile image
Onedge in reply to SlowDragon

Thanks Slowdragon,Your reply is fantastic and I’ve already read some of the articles and I’ll look into the others before seeing my doctor on Thursday. I’m not a vegetarian but don’t eat red meat very often (3/4 a year( but eat sausages , gammon and chicken constantly. I eat a lot of different veg and fruit. I will get that DIO2 test done as well. I’ll let you know what the doctor says. I’m very introverted and get very anxious talking to doctors and the like and then I get confused trying to tell him about all my symptoms which I know are all linked together. I concentrate so hard in keeping my panic down that I allow them to side track me and I leave without asking my questions and therefore not getting much help. I hope that the knowledge that you have supplied will give me the confidence to speak out and get the supplements I need. 😊

SeasideSusie profile image
SeasideSusieAdministrator

Onedge

You have, effectively, replied to yourself by putting your reply in the "Reply to Onedge" box.

You need to tag members so that they will be informed of any reply, you do this by putting @ directly in front of their user name (no space) and clicking on their name from the drop down list when it should turn blue. If it doesn't turn blue they wont be notified of you having mentioned them.

I will tag SlowDragon knitwitty and greygoose for you.

Onedge profile image
Onedge in reply to SeasideSusie

Thank you . I’m so useless at this!!!

Onedge profile image
Onedge in reply to SeasideSusie

Hi Seaside Susie,I’ve just got back from seeing the doctor. He addressed the insomnia by melatonin prescription . Will see how that goes four to eight weeks. Prescribed iron tablets to take straight away - no mention of an iron panel test but said let’s see if that helps. Vitamin B12 after this because if I had both together he wouldn’t know what’s doing what. He will monitor the kidney. So all turned out quite well. Will let you know in a months time when I see him again, if I have any improvement in my thyroid levels if not I’ll be asking for your advice again. Thanks for all your help

SeasideSusie profile image
SeasideSusieAdministrator in reply to Onedge

Onedge

Well that's good news and a great start 😊

I don't know if your GP mentioned it but take your iron tablets with some Vit C as this aids absorption and may help prevent constipation.

As iron affects absorption of other medication and supplements, you should take your iron tablets 4 hours away from your thyroid meds, and 2 hours away from any other supplements you may be taking, but you should take the Vit C with the iron tablets.

I'm pleasantly surprised he's prescribed melatonin, I take a very small dose of that and find it helps. I tried higher doses but find that a small dose of 300mcg is enough to help me.

SlowDragon profile image
SlowDragonAdministrator

Many members see bone health improves by getting Ft3 higher

Plus optimal vitamin D and magnesium

thyroidpatients.ca/2018/07/...

As well as vitamin D are you supplementing magnesium and vitamin K2

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

Notice how much vitamin D many of these medics are taking

vitamind4all.org/letter.pdf

Post with great reply about magnesium from humanbean

healthunlocked.com/thyroidu...

My Active b12 was 59 pmol/L ( 118-701)

Are you sure? The lab reference range you’ve posted there is more likely to be for serum B12, not Active B12. If that’s a serum B12 result you’re very very low in B12.

However, I think it probably is an Active B12 result—the range is more likely to be something like 50-150?? 59 is still on the low side.

Onedge profile image
Onedge in reply to Jazzw

Hi Jazzw,I’m just so confused with all these different measurements. The private tests give different values to the nhs. I just know I suffer with neurological disorders and I’ve been labelled with that from London specialists. I just want to get better. Do you think I should ask doctor for injections to see if they help me??

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

Please find your B12 results and double check which range

If it’s serum B12 59 would be EXTREMELY LOW and deficient

Serum B12 range is typically 210-680

Looking for result to be over 500

NHS test is ALWAYS Serum B12 test

Also via Blue Horizon private testing

Active B12 range is 30-150

Looking for result to be over 70

So Active B12 at 59 is slightly low

Active B12 test via Medichecks or Thriva

Onedge profile image
Onedge in reply to SlowDragon

Hi Slowdragon,I’ve just got back from seeing the doctor. He addressed the insomnia by melatonin prescription . Will see how that goes four to eight weeks. Prescribed iron tablets to take straight away - no mention of an iron panel test but said let’s see if that helps. Vitamin B12 after this because if I had both together he wouldn’t know what’s doing what. He will monitor the kidney. So all turned out quite well. Will let you know in a months time if I have any improvement in my thyroid levels if not I’ll be asking for your advice again. Thanks for all your help

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

Please can you confirm B12 result and range

Onedge profile image
Onedge in reply to SlowDragon

Hi Slowdragon,My active vit b12 was 59 pmol/L. The range was 37.5-188.

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

Ok …so B12 is a little low but not too bad

Looking to improve to at least over 70

Are you vegetarian or vegan?

Your folate levels are good as been taking supplements

Exactly Which folate supplement?

Is it folic acid, folate or a vitamin B complex?

Onedge profile image
Onedge in reply to SlowDragon

I’ve been taking 5mg tablets daily since June 2016 when the rheumatologist said my red blood cells were too large, the wrong shape and immature. He said it could be pernicious, haematylic or mega ? Anemia and that I was to take folate immediately and then he was going to do a bone marrow aspiration. Unfortunately, he then left and I never resolved it as I had no rheumatologist for over a year and then a locus appereared and sent me to a physiotherapist in another hospital further away and then promptly dropped me from the books!!

I’ve just looked and it’s folic acid

I’m not a vegetarian. I eat chicken, gammon and sausage perhaps once a week. Also I eat fish once a week ( although I’m not so well after eating it but know it’s good for me). The rest of the time it’s vegetables and rice/ pasta.

Onedge profile image
Onedge in reply to SlowDragon

I’m confused over folic acid or folate? I thought they were the same.

I’ve just received my new medication:-

Ferrous fumarate 210 mg tablets daily

Circadin 2 mg ( melatonin for sleep).

Will these iron tablets help with pernicious anemia or just iron anemia? I’m not sure what I have now??

helvella profile image
helvellaAdministrator in reply to Onedge

Pernicious anaemia is low B12 - specifically when caused by inability to produce a substance called Intrinsic Factor which is essential to absorb dietary B12.

The many causes of anaemia make for much confusion.

Causes of anaemia

Anaemia can have many causes, including:

• dietary deficiency – lack of iron, vitamin B12 or folic acid in the diet

• malabsorption – where the body is not able to properly absorb or use the nutrients in the diet, caused by conditions such as coeliac disease

• inherited disorders – such as thalassaemia or sickle cell disease

• autoimmune disorders – such as autoimmune haemolytic anaemia, where the immune cells attack the red blood cells and decrease their life span

• chronic diseases – such as diabetes, rheumatoid arthritis and tuberculosis

• hormone disorders – such as hypothyroidism

• bone marrow disorders – such as cancer

• blood loss – due to trauma, surgery, peptic ulcer, heavy menstruation, cancer (in particular bowel cancer), or frequent blood donations

• drugs and medications – including alcohol, antibiotics, anti-inflammatory drugs or anti-coagulant medications

• mechanical destruction –mechanical heart valves can damage red blood cells, reducing their lifespan

• infection – such as malaria and septicaemia, which reduce the life span of red blood cells

• periods of rapid growth or high energy requirements – such as puberty or pregnancy.

betterhealth.vic.gov.au/hea...

SlowDragon profile image
SlowDragonAdministrator in reply to Onedge

NHS and most medics prescribe folic acid - synthetic form of folate

Basically the same thing, but if you have MTHFR gene folate is better option

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

Many of us on here prefer to take a good quality vitamin B complex that has folate in INSTEAD of just folate or folic acid

This can help keep all B vitamins in balance and will help improve B12 levels too

B vitamins best taken after breakfast

Thorne Basic B is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow 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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

If 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.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

Thanks SeasideSusie,

I’ve just printed out your advise so I can take it as you advise. It’s going to be quite complicated taking it with all my other meds and supplements. I’m not sure how much melatonin he prescribed- it should be with me tomorrow. He did mention that he’s prescribing two iron tablets but two might cause stomach issues and constipation. Also, he said it could affect the potency or effectiveness of my other meds. I must admit I’m a bit scared but must try something to try and help me. I just need some sleep which I’m sure will help with my daily functioning. Hopefully help stablilise my thyroid levels. Not sure of the dose yet. Can I ask how long you have been using it. How long did it take to work? He said he thinks 8 weeks but will stop it after four if I don’t see any improvement. Will this be long enough time for an insomniac with years of not sleeping?

Marz profile image
Marz in reply to Onedge

SeasideSusie Have tagged SS as you inadvertently replied to yourself ! 🌻

SeasideSusie profile image
SeasideSusieAdministrator in reply to Onedge

Onedge

It’s going to be quite complicated taking it with all my other meds and supplements.

Once you know exactly what you are taking, if you are having problems fitting it all in or worried about time gaps, make a post and list what you are taking and members can suggest best times and what can be taken together.

He did mention that he’s prescribing two iron tablets but two might cause stomach issues and constipation.

As mentioned above, take Vit C at the same time as the iron. Vit C can help prevent constipation. You could probably take 1,000mg with each tablet but see how you go.

It's said that iron is better absorbed on an empty stomach but if this causes stomach upset you can take it with food which should help.

Also, he said it could affect the potency or effectiveness of my other meds.

Yes, as I mentioned above, iron must be taken 2 hours away from other medication and supplements, but 4 hours away from thyroid meds.

I just need some sleep which I’m sure will help with my daily functioning. Hopefully help stablilise my thyroid levels. Not sure of the dose yet. Can I ask how long you have been using it. How long did it take to work? He said he thinks 8 weeks but will stop it after four if I don’t see any improvement. Will this be long enough time for an insomniac with years of not sleeping?

We're all different so I can't answer your questions. I tried 3 brands before I found what works best for me, and the lower dose works better than the higher dose. I remember my practioner at the time saying that it takes time for your body to adjust.

Onedge profile image
Onedge in reply to SeasideSusie

Thanks for your advise,I’ve worked out a schedule of what meds to take when and I’ll let you know how it goes. I’ll list them if it doesn’t work!

I started my melatonin last night and I had a truly awful night. My left eye felt like an arrow went through it and a hatchet through my left side of head. I felt sick and my left side face dropped. I eventually got some rest but still up every two hours or so. The doctor did say it would take time so I’m going to try again tonight and hope it goes better. I’m going to have a bath in magnesium salts before bed as well. Fingers crossed 🤞

SeasideSusie profile image
SeasideSusieAdministrator in reply to Onedge

What dose is your melatonin?

I know it's common to see 3mg and up to 10mg, but I have found smaller doses better for me. I did settle on time released 750mcg but have now found that a 300mcg capsule is just as effective.

Onedge profile image
Onedge in reply to SeasideSusie

It was 2 mg. Circadin on box

SeasideSusie profile image
SeasideSusieAdministrator in reply to Onedge

That seems to be the standard prescribed melatonin.

Here is the NHS page about melatonin:

nhs.uk/medicines/melatonin/

And, of course, read the patient information leaflet. The online one shows it contains lactose (just in case that's a problem for you I thought I'd mention it) and under

Section 3 - Who can and cannot take melatonin:

To make sure melatonin is safe for you, tell your doctor if you:

have rheumatoid arthritis, multiple sclerosis or lupus, or any other autoimmune condition

Onedge profile image
Onedge in reply to SeasideSusie

Hi SeasideSusie,I’ve been taking the melatonin for about 6 nights now. The first night was truly horrific with tremendously bad migraine( felt like an arrow through eye and a hatchet through head)!

I’ve had headaches since all day. The thing is I’m still up every hour and I can’t get back to sleep now because of my added headaches. Resorted to taking a nurofen at 2.30am and I still have it and now feeling sick as well. My muscles are aching more ( I suffer with fibromyalgia) and I just feel like crap. Did you experience these things at the start of your treatment?? How long do you think this might last?? Did they eventually go away? Any advise you be great, thank you 😊

SeasideSusie profile image
SeasideSusieAdministrator in reply to Onedge

Onedge

Did you experience these things at the start of your treatment??

No I experienced nothing like it.

How long do you think this might last??

I have no idea. I am only a patient and can only speak from my own personal experience.

Any advise you be great, thank you

Speak to your GP or pharmacist. Have you read the patient information leaflet? Is what you are experiencing listed in the side effects section?

As I said, I tried 3 different brands before I found one that was best suited to me, and I take a very small dose (300mcg) which I've found more effective than the larger dose that my then practioner wanted me on (3mg which is 3,000mcg).

Maybe that brand/dose isn't right for you. Maybe melatonin isn't right for you and maybe your GP can suggest something else.

Onedge profile image
Onedge in reply to SeasideSusie

Ok thank you 😊 I’ll keep a record of my experiences. Dr did say try for month if no improvement we have to stop and try something else

Onedge profile image
Onedge in reply to SeasideSusie

Hi Seaside Susie,I’ve just had my iron panel back and I’m extremely disappointed ☹️

There was supposed to be four tests but two sample errors!!

Im very confused as my ferritin was last measured at 31 ug/l and now it’s at 58 ( 13-150) but my iron is high at 21.3 implique/l ( 6.6-26). Thé TIBC AND TRANSFERRIN SATURATION have sample error against them.

Why is my iron high and ferritin lower?

Im not sure if I need iron tablets or not? I know you are more thyroid specialist and I was wondering if iron is linked to thyroid in any way.

Can you please advise me on whether to take iron supplements that doctor gave me??

SeasideSusie profile image
SeasideSusieAdministrator in reply to Onedge

Onedge

Why is my iron high and ferritin lower?

I can't answer that. I'm the same, I have good serum iron and transferrin saturation % but my ferritin is always on the low side.

Im not sure if I need iron tablets or not?

I would say no, but I'm not medically trained so I'm not really qualified to say. The trouble with taking iron tablets is that it will very likely raise your serum iron and take it too high (and too much iron is as bad as too little), but it may not raise your ferritin level. I've experimented. I took a fairly lowish dose of iron (only 5mg elemental iron) and it raised my serum iron from 54% to 68% through range, but my ferritin dropped from 40% to 33% through range. So I stopped the tablets, no point in taking iron too high when ferritin was getting worse.

Onedge profile image
Onedge in reply to SeasideSusie

Thé body is so complicated and so complex, it’s just so difficult to work things out and what’s causing what

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