I'm feeling terrible, my brain's not functioning as usual and confused as to how to proceed or what to do so thought I'd ask you guys in case any of it triggers a thought as to what the hell is happening to me or what I can check. Will give as many details as possible so many apologies for the long post.
Last week, I started to feel foggier and foggier and more and more tired (has been getting worse for a while but particularly worse since last week) plus lost nearly a stone in weight in that week and then on Sunday, my head was unbearably painful, one eye was swollen/positioned different , can't stop peeing, tinnitus in both ears (or a constant electrical noise), clammy with pooling of sweat on palms and feet with fizzing and I could barely speak and had to call an ambulance and was admitted to hospital for a couple of days. My head was painful seemingly from the top of my spine/bottom of skull and is sending waves across my head with my brain hurting if I shook my head and feels a bit like a pressure cooker. Sometimes I had pain in my face too. The pain has reduced since but it's tingling all over the back still and a numbness in the bridge of my nose and eyes are still quite blurry plus brain not functioning as at all and can't focus. I was tachycardic but I didn't really place too much importance on this as couldn't really think or do much other than lie there and was more concerned with my head. Had a CT scan and MRI of the head but nothing found and they sent me home saying maybe just a headache. The nurses etc had constantly commented on my pulse which was all over the place but they mentioned something about POTS with no further investigation.
The next night, I had to call an ambulance again as my heart became erratic and the pain in my head spread down my neck and spine making my neck stiff etc and had cold and hot flashes in arms and legs etc etc. They realised my heart pressure was changing constantly as was my pulse and wanted to readmit me but I declined as heart was feeling slightly better by the time they arrived and ECG was normal although still quite fast. I figured I could get more done staying at home and getting tests etc done. Even the blood test takers where taken aback as my blood was gushing and then stopping and then gushing again.
And that's how it's been since with random sensations of heat in small places - I'm literally incapable of much at all - moving around, eating and everything just makes it worse, only relief is if I lie down but cant even lie on my back for too long without issues - I have no idea how I'm going to get my daughter to school each day or work tomorrow as my mum's been here doing everything for me as just not functional.
Just to note in regards to my heart, a few months before xmas and a couple of days after surgery/general anaesthetic, my heart went into meltdown - it was out of sync entirely and I couldn't catch a breath at all or move from bed for hours. My mum came round later and called an ambulance but when they arrived a couple of hours later, it had synced up and could breath again with an okay ECG. I put it down to bad reaction to antibiotics but did think maybe clots as blood was not clotting properly after for some time and could write on my skin.
Because I'd lost so much blood another non GA surgery shortly after this as couldn't stop the bleeding and because I was literally having fantasies about going outside to catch an animal of any form and tear it apart and eat it raw for some time thereafter (yes disturbing), I suddenly thought I must be severely B12/iron deficient as I was low enough already last January and always struggled to keep my own levels up without supplements (not really checking or treating the last year) plus nitrous oxide during surgery and that would explain everything that has happened the past week and maybe I have nerve damage etc (Figured also likely to be Vit D deficient as not really been out since the summer). This would also explain what's been happening to my legs the past year of so as been having issues walking and some random pins and needles in my feet and legs and weakness (more on right side). Had seen a physiotherapist but she referred me back to GP saying possibly something else going on like circulation or other and should investigate but nothing further since. The bottoms of my feet have been tingling and pulsating entirely since last week. I've worn a fitbit since yesterday and the feet and head and sweating etc are all definitely corresponding to my heart - they all get worse the worse my heart is.
However, the GP ran some tests on Wednesday and I did my own on the same day with more in depth ones and this does does not appear to be the case. I have only seen a few of the GPs ones off a screen and awaiting print out but all were in range with the exception of some things like under range urea/creatin but this is normal for me. My ferritin was on the lower end NHS 20 and medichecks 36.1 (13-150) but iron panel and blood count were all fine. NHS B12 was 460 and medichecks active b12 was 85.7 (37.5-187.5). Obviously not quite optimal but not low enough to warrant these symptoms as have been much lower before. Surprisingly, my B12 has gone up since last January of their own accord for the first time ever. Even my folate and Vit D was better than usual. In fact all the results all look far too good for me without having treated the past year as I normally have to treat/adjust and work hard to keep them okay although iron has been stable for a few years but should have been lower from all the blood loss so I'm just really utterly confused to be honest.
Now to my thyroid - as this is even more perplexing and my results and problems do not make sense and I need help. I've had thyroid issues since a teen (now 41) and was on 60mcg T3 only for nearly 15 years as T4 didn't work. This changed after going gluten free (as did all other health complaints/diseases) and quickly became hyper so was dropped to 30mcg T3 and was really really good for a couple of years. Then I did gluten trials and it appears this is when my thyroid died (direct link to gluten and thyroid was proven in my test results) and had new issues with my brain which turned out to be caused by zero T4 in my system as thyroid no longer running a little in the background so started swapping out T3 back to T4 but also because I more and more felt my body was not wanting the T3. Up until Autumn 2020, I was on 75mcgT4 and 20mcg T3 and the consultant agreed to put my T4 up to 100 as I was on the low end of range for T3 and T4 levels. I had actually gone down to only 10mcg of T3 as again just not sitting right with me but didn't tell consultant this as wanted to try more T4 without reducing my official dose of T3 in case I didn't get on with it plus would allow me more flexibility if prescription more than I wish to take and it's kinda easy to manipulate the results! I've been on this level ever since.
However, since last week and my heart going, my body does not seemingly like me taking my thyroid meds at all - fitbit and symptoms proved this to be the case and is really bad for about two hours after I take them in the mornings and better at night although never okay. I stopped taking my 10mcg T3 a couple of days ago as just too scared to take them as highly active and figured just let my body do with what it wants with the T4 whether that be making T3 (if I can as have no idea as never used to) or converting it to Rt3 - plus bodies when ill and even when having heart issues tends to put a stop to producing T3 so maybe it would be best to follow suit for now. Felt slightly better (just slightly) and heart rate came down a teeny bit for a couple of days but then it's clear it doesn't like the T4 either and I'm really really confused. See my thyroid labs below as another thing that jumped out at me when looking at all the recent ones together is that my TSH does not appear to be responding the past year in the same way it always has and is always just above 1 regardless of thyroid levels. Plus a few times this week, my thyroid has hurt a little and makes a sound when you push it from one side.
03/03/21 (3 hours after dose)
TSH 1.15 (0.27-4.2) (would normally be supressed)
T4 18.3 (12-22) (never been this high in over 20 years)
T3 7.25 (3.1-6.8) (can 10mcg of T3 even cause this level??)
NHS TSH same day just over 1 (5hours after dose)
Aug 20 (24 hours after dose) - december 20 labs practically the same but don't have figures
TSH 1.01(0.35-5) (TSH would normally be higher in all my decades of previous results)
T4 8.1(7-20)
T3 3.6 (3.8-6.7)
14/01/20 (8 hours after dose) (TSH is more normal here but still just over 1)
TSH 1.08 (0.27-4.2)
T4 12.6 (12-22)
T3 5.86 (3.1-6.8)
22/07/19 (8 hours after dose) - TSH as expected
TSH 0.181 (0.27-4.2)
T4 12.2 (12.22)
T3 7.91 (3.1-6.8)
I don't know what to do about my T3 or even T4. I don't want to take them but also don't want to make matters worse by going too low. Shall I order a few finger prick tests and do some over the course of the day especially one in the morning before take anything? I wanted to do an Rt3 test to see if Im converting too much T4 but currently not available. Should I try and get thyroid consultant to scan my thyroid?
I am so so sorry for this but I have no idea what to do about the thyroid and am lying about totally useless as can't stand up and losing my brain function. I did book an urgent appointment to look at my heart tomorrow via echocardiogram privately to see whether it's my heart/circulation or if something else driving it as can't cope with this so dont care about the cost and he may look at adrenals if heart seemingly okay. cortisol has been slightly elevated at night but not worryingly so but have had what appear to be adrenalin rushes making me wake immediately. I will book an eye appointment to look at the pressure in my eyes asap as figured might be a free workaround checking if pressure in my head causing the blurriness lol! I obviously need to push GP to investigate what might be going on with nervous system too with the pins and needles etc but what should I ask for??
What do you think? so many thanks for any advice or anything.
Sarah
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Saggyuk
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Thanks, Yes it was only the last test that I did in short time after as wasn't testing for my thyroid and just took the next available appointments as desperate yo work out what was wrong. However that is not how I normally do it. Normally 24 hours for nhs and 8 hours for medichecks as t3 drops too low after 8 hours historically so gives a false low where I used to take it throughout the day. I've been doing it that way for decades and stayed completely stable even throughout pregancy. Problem is I don't think my heart can cope with being over at all right now. Every time i take my meds i feel dire. I've also not had any of the typical hypo signs I've always experienced over these decades- slow digestion, weight gain, other type of head aches, drowsiness, peeling skin etc etc almost all the opposite so I just don't get it. Maybe different parts of my body like heart/nervous system can't get on with t4 after years without whereas other parts can. Only issue is my brain couldn't cope with so much t3 and I stopped taking it more and more as it was making me feel worse somehow. I'll take a blood test monday or Tuesday morning at the right time to see where it's at x
Just to clarify - the following labs were taken in august but the ones i had a few months later were exactly the same - the delay in increase in meds only due to difficulty seeing consultant and GP won't touch. This was on 75mcg t4 and 10 micrograms t3 and taken 24 hours after dose. My t4 was increased 25mcg on the back of them.
TSH 1.01(0.35-5)
T4 8.1(7-20)
T3 3.6 (3.8-6.7).
I did as necessary and increased and that was just a few months ago. I feel hyper not hypo tbh. I could try taking t3 without the t4 tomorrow and see what happens to check if my body is responding badly to t4 rather than thyroid meds in general? Obviously would take the t4 after an hour too.
Sorry - it's hard to make sense for me. I always do my own tests with medichecks before the consultants - normally a week apart. I do my own with medichecks after 8 hours and nhs requested ones after 24 hours. And see the difference - i don't have access to all the nhs ones at the mo. I can't do my own medichecks after 12 hours as the phlebotomy unit shuts at 4pm and I'm not exactly an early bird. Plus I take both t4 and t3 so can't do 12 and 24 hours at the same time anyway. Only the very last ones I took this week were not in line with these as I was not doing the tests for thyroid - they just happened to be done too. Hope that makes sense x
I know what you mean and I did increase since the last 24 hours ones were done in nov. I just haven't been able to check thereafter and annoyingly shoukd have done before now but would have been better than this. and now at a loss as can't tolerate my thyroid meds because of my heart but will still take the t4 and get proper test done next couple of days to check where I'm at truly. Still don't know what to do re t3 though as heart did not like this level and making my heart even dodgier x
I know and I do understand - thats why I'm so confused. It's just always the way I do my tests as single mum with school runs and getting to workhard enough in the mornings so always get my own done at 4/4.30 pm after I pick her up from school etc. I go to extra effort to do the NHS ones after 24 hours. I feel like my heart is so unstable and every time I take my pills, I feel like I should be calling an ambulance. Even now, I'm sweating profusely and my heart is hurting again and almost inclined to call an ambulance again. Half of me thinks I'm messing myself up so should go and take the T3 now. the other half of me says my body knows when I'm high or low after all these years and I would have been higher than the last 24 hour results and those kind of levels don't really warrant these symptoms and I don't feel low and that something else is going on and if I do have heart problems, my T3 should be lower - plus i still don't see how 10 mcg of t3 could have made my T3 so high even so shortly after taking them. I just don't know what to do. So many apologies to you - I'm just desperate and somewhat scared as never been in this position before. But so many thanks for trying xxx
Hi Saggy...... you have been having a terrible time!
Can I ask which brand of T4 you have been taking? These symptoms sound exactly like the ones I had with one brand and disappeared completely when I switched.
I hope that is what it is and that you get it sorted soon.
OK, so my first question has to be: do you have Hashi's?
And, do you know that taking T3 is automatically going to lower the FT4. That's what it does. So, perhaps you don't need your FT4 and higher - perhaps you don't need it at all.
I could try taking t3 without the t4 tomorrow and see what happens to check if my body is responding badly to t4 rather than thyroid meds in general? Obviously would take the t4 after an hour too.
That's not going to tell you much. You will still have plenty of T4 in the blood. The half-life of T4 is seven days, so takes a while to get rid of it completely.
What it might tell you is if you are reacting to the fillers in the levo tablet. Have you tried different brands of levo?
Plus I take both t4 and t3 so can't do 12 and 24 hours at the same time anyway.
Well, you can but it's the time you take your doses that has to change, not the time of the blood draw.
We normally advise people to have their blood draw as early in the morning as possible - before 9 am, anyway - having fasted over-night. That way, you get the highest TSH possible. TSH levels drop after that and are lowest at around 2 pm.
You should leave a 24 hours gap between your last dose of levo and the blood draw. Any less and you get a false high FT4. Any more and you get a false low FT4. A gap of 24 hours gives you your normal circulating level of T4.
You should leave an 8-12 hour gap between your last dose of T3 and your blood draw. Any less and you get a false high FT3. Any more and you get a false low FT3.
So, what does that mean in practical terms? Say you normally take your 75 mcg T4 and 10 mcg T3 at 8 am. You have an appointment for 8 am the next day for the blood draw. So, the day before the blood draw, you take your levo and 5 mcg T3 at the normal time of 8 am. The other 5 mcg T3 you take between 8 pm and 12 am, which gives you your gap of 8-12 hours. Then you can take both your tablets after the blood draw.
But, you always have to do it in exactly the same way every time you have a test. Otherwise, you can't compare the results.
I wanted to do an Rt3 test to see if Im converting too much T4
Not much point. It's an expensive test and doesn't give you much information that you can't get from other tests. It will tell you if your rT3 is high, but won't tell you why. And, there are many, many reasons for high rT3, only one of which has anything to do with thyroid. And, that is when your FT4 is too high. Given the level of your FT4, I doubt it's converting to excess rT3, although some of it will always convert to rT3 and some to T3.
In any case, rT3 is not the problem we used to think it was. It doesn't block T3 receptors, it has its own receptors. It doesn't cause symptoms. It is inert and only stays around for about two hours before being converted into T2, then T1, and then the iodine is recycled. So, not worth bothering with.
B12 was 460 and medichecks active b12 was 85.7 (37.5-187.5).
I would want my B12 much higher than that! At least over 550. B12 deficiency is more about symptoms than blood test levels, it would seem - blood tests are only a rough guide at the best of times - and it would appear that you do have a lot of B12 symptoms. B12 is the nerve vitamin.
My ferritin was on the lower end NHS 20 and medichecks 36.1 (13-150) but iron panel and blood count were all fine.
I don't know an awful lot about iron, it's very complicated. But, I do know yours is pretty low! Who said your iron panel was 'all fine'? That's just an opinion, If I were you, I'd give the actual numbers for people to get a better idea, and I'll tag humanbean who knows a lot more about the subject than I do.
Obviously not quite optimal but not low enough to warrant these symptoms as have been much lower before.
I'm not sure one can make assumptions like that. Could be that the longer the levels are too low, the worse the symptoms get!
cortisol has been slightly elevated at night but not worryingly so but have had what appear to be adrenalin rushes making me wake immediately.
So, what was your cortisol like early morning? If your adrenals are strugging, and can't make their quota of cortisol early morning, they are going to keep at it until they do. This means that cortisol will be too high at bedtime and stop you sleeping - or will allow you to get to sleep and then wake you up. So, even slightly elevated at night is cause for concern, because it means the adrenals are struggling.
I was literally having fantasies about going outside to catch an animal of any form and tear it apart and eat it raw for some time thereafter (yes disturbing), I suddenly thought I must be severely B12/iron deficient
And, I would agree with you!!! Pretty blatant symbolism, that. I don't eat a lot of meat, myself. But, when my levels get low, I fantasise about stuffing my face with meat. One time I was ill and asked my daughter to get me a rotissery chicken. I nearly went crazy whilst she sat there chatting, couldn't take my eyes of that bag on the table, wondering when the hell she was going to go!?! As soon as she left, I went all Henry VII - just couldn't help myself! - tearing that chicken apart and eating it out of the bag, throwing the bones over my shoulder for the dog, grease and gravy running down my chin. I think your body was trying to tell you something! lol
So, where do you go next? First thing, I think, is to get blood tests done properly - including vit D, vit B12, folate and ferritin. And, if your nutrients are too low, then you need to start supplementing. Hearts need nourishing.
Thanks Greygoose- Yes Hashis for nearly 30 years - don't think my thyroid is alive anymore. Yes am aware of T3/T4 and how it works. Do need T4 as per previous posts (I used to come on here quite regularly but found it makes me dwell on my health too much and get too angry at docs - sorry). If I survive I promise to help more as it was the first place I could of to come when desperate
The only reason I thought to just try T3 in the morning was because for years, T4 did nothing for me and TSH wouldn't come down so was put on T3 only but then it did after going GF and sorting out issues etc and changed over somewhat but maybe I was mistaken and maybe I'm accumulating T4 in my system somehow and not getting enough Thyroid overall regardless of my TSH this time - which seems a little stuck and unresponsive - just thought Rt3 would answer this question. Taking the thyroid meds is making me severely worse for at least two hours after so figured trying just t3 might be worth seeing if have same affects - considering my previous issues with T4 and if its because my body is desperately in need of T3, maybe it won't have such a bad reaction.
Cortisol was slightly high at night and slightly high in the morning - fine the rest of the day. Not that much over though. My cortisol was under range some years back with lots of things pointing at addisons including brown patches on skin and compete passing out etc, after GF they started working again, just went a little high at night but better than not enough and kind of lived with it. This has been the case for some years and the waking up like a bolt being very awake with something surging is a very new thing.
I was deficient in everything for years since a child before going GF and was on iron etc almost permanently - levels have been good for most of the time since. Just struggled in lock down to keep an eye as usual or keep them quite as optimal and not had the appointments I would normally get etc etc. Still no where near as bad as I used to be and couldn't have been for longer than last year.
I'll get my iron labs in case I'm not seeing them correctly as have such a funky brain.
I craved meat like no one's business before but not actually envisioned ripping live animals apart with my teeth quite like that before
I've taken some B12 and spatone just in case and will continue as my labs do not quite correspond to what they are normally in all honesty - all much better than expected making me feel something is off.
Yes Hashis for nearly 30 years - don't think my thyroid is alive anymore.
Well, the only way to know is to stop all thyroid hormone replacement for a few months and see what happens - and I don't recommend that! Doesn't really make much difference if it's dead or alive.
T4 did nothing for me and TSH wouldn't come down
So, you weren't converting? Or maybe not absorbing it very well.
but then it did after going GF
So, possibly an absorption issue, then. Or both!
maybe I was mistaken and maybe I'm accumulating T4 in my system somehow and not getting enough Thyroid overall regardless of my TSH this time
Not quite sure how that would work. As I said, the half-life of T4 is around 7 days, it can't stay there indefinately.
TSH doesn't always reflect thyroid status very accurately. Which is one of the reasons it shouldn't be used for dosing.
just thought Rt3 would answer this question.
Umm... no. rT3 does answer any questions.
As I said, I'm no expert of iron, but all your iron panel results are under mid-range, which doesn't look good to me.
Your vit d may be higher than expected, but it's still pretty low. I think you really need vit D, magnesium and vit K2-MK7 supplements. That low vit D won't be doing you any good at all.
Thanks, I don't think it's absorption - my levels were fine but they couldn't get my tsh down on T4 initially so was put on full dose T3 instead. When I went GF, I went hyper after six months and had to reduce my dose by about half and was really good for a couple of years still on T3 only until I did three gluten trials in a row one year where they did different tests. My thyroid consultant checked my thyroid labs before and after each six week gluten trial. At the six week point of each one, my T3 and T4 levels remained exactly the same as before the gluten trial meaning I clearly absorb it and they couldn't accuse me of not taking it but my tsh was 30-50 meaning somehow gluten has a direct impact on my thyroid. It took three months after finishing the gluten trial to come back down to normal again. This along with a few other things like the clearance of my ongoing anaemias, autoimmune sleep disorder, autoimmune blistering condition and reversal of high sugar levels (basically things that could not be refuted) is why the NHS diagnosed me with Non-coeliac gluten sensitivity.
In the last gluten trial, I had a tsh of around 40-50 but unlike the small amount of T4 my body had always produced in the background of it's own accord when on T3 only (normally in the range of 5-7), there was suddenly none recorded and got a zero result so figured with a TSH that high, my thyroid was now likely dead otherwise why did it stop entirely when I needed it. I only worked this out later as I then went on to develop other severe problems with my brain (including lack of maths, non responsive pupils with special glasses for photophobia prescribed, loss of large swathes of memory etc etc) with ongoing zero T4 tests until I went back onto T4 after working out that Brains need T4 as they don't like to take active T3 through brain barrier - these issues then cleared up although took over a year or two to get all my memories back - it appeared it was just loss of dendritic spines like standard hypothyroidism can induce. A doc with specialism in the neuro area agreed with me as they had observed me over the this time.
I have no idea if that made sense as struggling with my words right now.
It's all just me trying to find anything that might help me get to the root of the problem as I'm so stuck and never been so helpless especially where it's my heart- none of it is me thinking I'm right or that my questions held any validity. Just wondered if I'm not using all the T4 appropriately and have gone too far swapping back over to T4, maybe a high Rt3 result would help write that out as bodies can convert T4 into RT3 to deactivate it if it doesn't want it rather than let it become T3? Plus you never know, maybe my system adjusted itself too much to take T3 after all those years- again just desperation in working it all out - especially where the thyroid meds having such a bad impact.
I've been taken all the B12s, Vit D (and K) for a few days now in case it helps and started iron after it arrived today so don't worry about that
I will call and try and get a test done in the morning before I take anything more so it will be the 24 hours after dose. Doubt I'll get an appointment so quickly though as they've stopped the walk in blood tests for now due to covid. I've reluctantly took a T3 tablet half hour ago too so that will be 12 hours later but my head and tinnitus and heart pain went up a notch soon after.
Oh I don't ever take magnesium as mine is normally over range - this was checked too and it's just under the top of the range.
I really need my potassium results as have been craving bananas so much and had 4 the other day. I know the GP did them as well as calcium but just haven't managed to get hold of the test results yet but know all were in range.
Does anyone have any publications that give any indication of how much 10mcg of T3 would impact a test result?
When I went GF, I went hyper after six months and had to reduce my dose by about half
What is your definition of 'going hyper'? Of course, if you are hypo to begin with, you cannot go truly hyper, it's a physical impossibility. But, you could have had a Hashi's 'hyper' swing.
but my tsh was 30-50 meaning somehow gluten has a direct impact on my thyroid.
No, it doesn't actually mean that at all. Gluten doesn't have any impact on the thyroid. It's just that some Hashi's people are gluten-sensitive and therefore feel better without gluten in their diet. Or, they have Coeliac Disease, which implies a leaky gut.
If your TSH was that high when your FT4/3 were in-range - 50% or over - it either means you had a pituitary problem, or there was some interference with the blood tests.
A six week trial of gluten-free is a bit of a nonsense. It would take longer than that to feel the benefit.
Brains need T4 as they don't like to take active T3 through brain barrier
This is a bit of a myth. It used to be thought that T3 couldn't pass the blood/brain barrier. But, people like myself are perfectly fine on T3 only with no brain problems. It's true that the brain does 'perfer' to convert T4 to T3 in situ, but it still does perfectly well on 'ready-made' T3.
Just wondered if I'm not using all the T4 appropriately and have gone too far swapping back over to T4, maybe a high Rt3 result would help write that out as bodies can convert T4 into RT3 to deactivate it if it doesn't want it rather than let it become T3?
Bodies can and do convert T4 to rT3 all the time. Can't remember the actual percentages but let's say 50% T4 is converted to T3 and 50% to rT3. But, only if you have high in-range FT4 will it convert to excess rT3, and therefore less T3. As far as I can see, your FT4 has never been that high.
But, it could be - for whatever reason - and there are many! - that you don't convert T4 to T3 very well. But, that doesn't mean you're going to have excess rT3 if your FT4 is not high.
Oh I don't ever take magnesium as mine is normally over range
That is meaningless. Well, that is to say it doesn't really mean you have too much magnesium. It's not even worth testing it due to the way the body handles magnesium. It doesn't mean you not deficient. And, if you're taking vit D you could rapidly become deficient because it uses up your magnesium.
Most people are magnesium deficient because soils are depleted. And, excess is excreted, so best to just take some, and forget the testing. Low magnesium could be part of your problem, because the heart needs it.
Does anyone have any publications that give any indication of how much 10mcg of T3 would impact a test result?
I doubt if such a thing exists. It would vary so much from person to person.
Thanks, I'm really sorry - I keep getting my words muddled so am not being clear at all - please see below.
When I went GF, I went hyper after six months and had to reduce my dose by about half
What is your definition of 'going hyper'? Of course, if you are hypo to begin with, you cannot go truly hyper, it's a physical impossibility. But, you could have had a Hashi's 'hyper' swing.
---- After I gave up gluten, I became more and more hyper on the 60mcg of T3 I'd been taken for a decade - no recordable TSH and T3 levels consistently 10+ with many hyper symptoms and it took a reduction three times to get back to normal TSH and high in range T3 levels. I meant hyper from over medication.
but my tsh was 30-50 meaning somehow gluten has a direct impact on my thyroid.
No, it doesn't actually mean that at all. Gluten doesn't have any impact on the thyroid. It's just that some Hashi's people are gluten-sensitive and therefore feel better without gluten in their diet. Or, they have Coeliac Disease, which implies a leaky gut.
If your TSH was that high when your FT4/3 were in-range - 50% or over - it either means you had a pituitary problem, or there was some interference with the blood tests.
A six week trial of gluten-free is a bit of a nonsense. It would take longer than that to feel the benefit.
----- - A gluten trial is when you are put on gluten to test the consequences not when you stop eating gluten. My TSH level was normal at the beginning of the gluten trial. After six weeks of eating gluten, my tsh level went to 30-50 but my T4 and T3 levels were normal which meant I was still absorbing my meds. It would then take a couple of months after eating gluten to revert to normal. This happened on all three gluten trials which suprised the endo as he hadn't come across that before. I didn't quite mean a direct impact on my thyroid as I'm muddled - but a direct impact on the way I use it or somewhere else in my body caused by gluten. My TSH came back down again after the six week gluten trial (when I stopped eating gluten)- This is likely the reason why I needed twice as much Thyroid hormones before quitting gluten and then was over medicated thereafter.
Brains need T4 as they don't like to take active T3 through brain barrier
This is a bit of a myth. It used to be thought that T3 couldn't pass the blood/brain barrier. But, people like myself are perfectly fine on T3 only with no brain problems. It's true that the brain does 'perfer' to convert T4 to T3 in situ, but it still does perfectly well on 'ready-made' T3.
---- I wasn't disputing this honestly. I was on T3 only for decades. I was fine until I stopped producing T4 in the background at all with no recordable levels of T4. Other people may be different. They now advise this to pregnant woman only taking T3 due to testing on mice and rats and was shown that it doesn't pass the foetal brain barrier which matched with problems at the time. Anyway it was just me pondering as desperate.
Oh I don't ever take magnesium as mine is normally over range
That is meaningless. Well, that is to say it doesn't really mean you have too much magnesium. It's not even worth testing it due to the way the body handles magnesium. It doesn't mean you not deficient. And, if you're taking vit D you could rapidly become deficient because it uses up your magnesium.
Most people are magnesium deficient because soils are depleted. And, excess is excreted, so best to just take some, and forget the testing. Low magnesium could be part of your problem, because the heart needs it.
-----I feel sick within half hour if I take magnesium which I why I tested it back then after advice to start taking it and saw I was always over range- now it's just part of a panel I get anyway. This test was just under top of the range so slightly loewr than normal although I haven't been eating as much as usual in hospital etc. Does this test not mean anything? I'm really confused now but I'm not sure I should take it if I feel sick with it and have always tested over range. My mum is always high too. Please explain further in case I should be taking it.
OK. But, how did you manage to get up to 60 mcg in the first place? You surely must have needed it at the time. If you're telling me that it was because you went gluten-free, then your problem must have been poor absorption for you to have needed such a high dose.
Have you ever been tested for Coeliac?
A gluten trial is when you are put on gluten to test the consequences not when you stop eating gluten.
Ah, OK! I've never heard of that.
After six weeks of eating gluten, my tsh level went to 30-50 but my T4 and T3 levels were normal which meant I was still absorbing my meds. It would then take a couple of months after eating gluten to revert to normal. This happened on all three gluten trials which suprised the endo as he hadn't come across that before.
It would surprise me, too! I don't see how gluten can impact your TSH - which is a pituitary hormone - whilst leaving your FT4/3 in-range. BTW, there's no such thing as 'normal' with thyroid. When a doctor says 'normal', all he means is 'in-range'. But, it's where in the range the results fall that is important. They can be in-range but far too low, which would cause your TSH to rise. Although, perhaps not that much.
I didn't quite mean a direct impact on my thyroid as I'm muddled - but a direct impact on the way I use it or somewhere else in my body caused by gluten.
I still don't see how that could be. This raises more questions than it answers!
Does this test not mean anything? I'm really confused now but I'm not sure I should take it if I feel sick with it and have always tested over range. My mum is always high too. Please explain further in case I should be taking it.
As far as I know, and for some reason, the body always likes to keep good levels of magnesium in the blood, and will deprive the cells and the bones of magnesium in order to keep good levels in the blood.
OK. But, how did you manage to get up to 60 mcg in the first place? You surely must have needed it at the time. If you're telling me that it was because you went gluten-free, then your problem must have been poor absorption for you to have needed such a high dose.
----
I had been on 60mcg grams for years as that was what was needed to get my tsh down and get things working properly and reduce symptoms from being hypo. Not that I felt great ever before going GF but at least I pooped on a more regular basis etc with the T3 lol. The 60mcg T3 got basic functions going but not my head or other things - still had big problems elsewhere. It was only after went GF, that I went hyper from over medication and had to reduce and put it down to absorption. It was only later on the gluten trials it became apparent that I was still absorbing the same amount as thyroid levels were stable- just my tsh kept going up.
Have you ever been tested for Coeliac?
-----Yes but all negative apart from a skin biopsy on autoimmune blistering condition which proved it was the same kind of autoimmune issue as the coeliac skin condition (can't remember what it was called) but slightly different lol!! However, all the problems and autoimmune diseases I had prior since a child all cleared up too (too late for thyroid it seems). They did state it was a genetic issue and likely a different protein than gliadin (hence why I can't tolerate derivatives of wheat/barley like maltodextrin and glucose syrup either unlike coeliacs) but put it down as non-coeliac gluten sensitivity for lack of another name and many of my family have all had to give up gluten too (or don't and remain ill) including my daughter - she was the reason I did the trials to get proof to get the dad and school to take it seriously. Her issues all cleared up too fortunately.
It would surprise me, too! I don't see how gluten can impact your TSH - which is a pituitary hormone - whilst leaving your FT4/3 in-range. BTW, there's no such thing as 'normal' with thyroid. When a doctor says 'normal', all he means is 'in-range'. But, it's where in the range the results fall that is important. They can be in-range but far too low, which would cause your TSH to rise. Although, perhaps not that much.
---- My T3 and T4 stayed exactly the same as before - as in the same part of the range and pretty much identical numbers which confused endo even more lol. To be fair, I've been seeing the same endo since my 20s and he took one look at me and my tests and put me straight on T3 and he likes his patients to have TSH to be at 1 or just under with Ft3 in high range and doesn't even mind if your T3 is slightly high sometimes unlike most docs plus he pays no attention to the TSH which is why he agreed to put me up on a tsh of 1 last time so he's far better than most. He got me through my pregnancy really well too and tested me continuously. He decided to keep me on his books regardless all this time and sees me every six months as he doesn't want GPs taking me off the T3. He was very reluctant to start putting me on a bit of T4 because of prior issues so will probably tell me "I told you so"!!
I didn't quite mean a direct impact on my thyroid as I'm muddled - but a direct impact on the way I use it or somewhere else in my body caused by gluten.
I still don't see how that could be. This raises more questions than it answers!
---- I know endo could not get his head around it either which is why he repeated the same tests two more times on the next two gluten trials I had to undertake and was shocked at how well I was after GF after all these years. This was one of the results:
TSH 36.89 T4 <3.2 T3 5.8 (3.30-5.30)
As far as I know, and for some reason, the body always likes to keep good levels of magnesium in the blood, and will deprive the cells and the bones of magnesium in order to keep good levels in the blood.
Which magnesium were you taking?
----Oh so a bit like calcium? I didn't know that so I'll bear it in mind as had just assumed a bit like potassium. It was a brand often mentioned on here a few years ago for Bs at the time (maybe super b plus) but my head is blank - white bottle, american, expensive, blue/green picture/logo possibly??? I don't quite have the same problem with low dose multivits with it in.
I had been on 60mcg grams for years as that was what was needed to get my tsh down and get things working properly and reduce symptoms from being hypo.
Yes, well, obviously an absorption problem, as I said.
But, you do know it's not about the TSH, don't you? The most important number is the FT3.
It was a brand often mentioned on here a few years ago for Bs at the time
I didn't mean the brand of magnesium. I meant the type of magnesium: magnesium citrate? Or magnesium malate? There are quite a few. The best one for your heart would be magnesium taurate.
Forgot to say, you really shouldn't be taking multi-vits. They're a very bad thing to take. Most of them contain iodine and that is something you really, really don't want.
Sorry again - not being clear. It was the only way consultant could get my tsh down and my t3 levels up. he doesn't particularly care about tsh although he couldn't understand the above test. Absorption? Just in case I'm misunderstanding - yes that's what I originally thought but in my gluten trials my tsh was 36 and t3 levels were higher than upper limit so seemingly still absorbing it into my blood so maybe some other mechanism at play?
Oh apologies, just searched my emails and it says I ordered amazon thorne citramate - Ithink mix of citrate and malate. Okay I will try taurate but maybe find some low dose one to begin with and see how I tolerate in case it makes me sick again as could do without. Many thanks xx
No, when you were on 60 mcg T3. You said it was what you needed at the time. That was when you had the absorption problem. Seemingly, messing around with gluten improved your absorption and that's why you became over-medicated.
Ahh sorry I'm so confused and it's probably my fault!! Yes always thought it was just an absorption problem when gave up gluten and had to reduce. Was just the gluten trials a couple of years later and the weird results which made me/endo think otherwise. The gluten trials made me deficient in everything else again plus stomach was foul again so couldn't understand why I was still absorbing the T3 which should have reduced after six weeks if not absorbing anything else correctly - I have an extremely fast reaction to the tiniest crumb of gluten/wheat (even my pets have to have 100% GF certified and bloody expensive hay and food as I started to react to it when sniffing the dust etc) and quickly go back to where I was- I literally pop up in blisters that come up from below the skin (as demonstrated on biopsy) within 20/30 minutes of consuming it much to the disbelief of the skin doc? (words are seriously failing me right now lol). The results in the gluten trials were the same after I'd been on T4 for a few years by the GPs before I finally saw consultant - high TSH but T4 levels okay so just thought all pointing towards some other thing going on rather than just absorption. I do not know how it can do that and is a mystery - I would actually love to know
As would we all, I'm pretty sure! I cannot imagine what caused the high TSH, but the fact that you had to reduce your T3 from 60 mcg to whatever it is now, just smacks of an absorption problem that was resolved. I cannot see what else it could be.
No not at the moment as don't tend to bother with multivit - I might take some if can't work out what I'm craving or feeling crappy sometimes I suppose x
NHS Ferritin was 20 taken on the same day but don't have ranges to hand right now.
Only other thing out of range or clearly off from the middle of the range is MCHC on blood count and this was the same last January (along with under range transferrin saturation) However, the NHS results from a few days ago disagree a little and put my MCHC in range at 332 (315-345).
Other results from medichecks a couple of days ago:
Vit D - 57 (50-175) Higher than expected and I normally only notice symptoms under 40 but will take more as well.
Thanks, I did write them all above but aware that was too long. Since last week particularly, noticed I was getting more tired/unable to focus/making errors with work and problems with eyes - thought maybe too much screen time. Then Sunday a head like I've never had before and couldn't speak much or find my words,one eye swollen/different (heart was out too but was too unfunctional to notice and was lying down the whole time anyway. Pain and fizzyness in my head, bad bad constant tinnitus in both ears like an electrical sound and feet buzzing away. peeing constantly though maybe not more than usual - ust more often as normally hold more than most humans can bear going whole day in office sometimes. sweating profusely - water literally pooling in palms and feet really sweaty, chest clammy. palms very red and blotchy. brain hurt when shook. Severe pain in head gone although pain in neck/spine/face on occasion but fuzzyness/tingling in brain, hot head and tinnitus/blurry vision in brain still there hence spelling mistakes and random hot patches on legs and arms for short periods here and there when heart at it's worse. Pulse all over the place - was noted and remarked upon but not investigated further as all about the head. Discharged although still not really functional. did notice worse everytime I took my thyroid meds. Since heart became more unstable or at least I noticed it as was trying to move around, blood pressure all over the place as is pulse without moving - worse when I stand up/move/eat. Didnt take T3 last couple of days and felt mildly more stable though still cant move around much but managed a short walk yesterday. Also have some pain in right abdomen although this is new thing. Thyroid hurt a couple of times this week which has never happened before. Believed it to be dead as didnt produce one iota of T4 when had very high TSH once - unreadable test result when on T3 only. Did see cardiac consultant thursday who wasnt happy with way my heart sounds and said need to work out why working so hard but didn't think I'd keel over just yet - was at a more stable period though. Wanted to check adrenal side too. Have echocardiogram tomorrow night. Sorry there's so much and I know not sraightforward - was more ust in case anyone had experienced anything like this before as really don't know what to do about my thyroid meds. Thanks so much though xxx
Hi Saggyuk your symptoms sound much like mine when I presented with pernicious anaemia at the beginning of 2018. Have been self-injecting B12 since just after that. Did they not consider it a possibility at hospital? Hope you find out what is going on.
Hi Nightingale - Funnily enough, that was actually my initial thought. Basically I was deficient in everything even with treatment up until I gave up gluten but after I got all my levels optimal with supplements and managed to stay somewhat level. I managed to keep iron levels at the same level without treatment and folate came in range and only really had to take vit d sometimes as not always out in the sun enough I suppose. I did notice that my b12 would never really stay up near optimum without help but would just pop high dose every now and then and kept it topped up but assumed maybe just won't stay optimal rather than not stay up at all.
However, I was struggling with finding high dose without wheat derivatives or without artificial/alcohol sugars like mannitol which I'm also sensitive too and swapped to a lower dose one some point before the last year. I couldn't think in hospital but when I got home and got a few hours of partial brain back, I looked through the medichecks tests for clues and when saw the tracker for B12 - saw that it just dropped and dropped over the past two years and was already on the low end in jan 20 and figured that must be the answer as I just haven't been monitoring myself properly over the lockdown for one reason or another! I took a load when I realised in the middle of the night and did get some funny cramping and feet pulsating even more. However, when I got my test results back the next day - it had actually increased somehow to the above result. I'd probably only taken one bottle of the lower dose one earlier in 2020 so actually had gone up for once so figured probably not the answer.
My serum B12 is ridiculously high, but it obviously was not getting into the cells. B12 injections have helped brain fog and a bit of the peripheral neuropathy, plus the feeling of slipping while walking. Unfortunately, not the tinnitus though. It is not always down to the FT3 measurement, but vitamins and minerals need looking into carefully. Wish you well.
Hi Scrumbler - just to admit the t3 I took a little earlier didn't make me feel as bad as the t4 or taking them together has made me feel! My heart rate and fizzing etc went up for a bit but didn't make me feel as sick and it came down again a little after and actually been a little better since. Not that my heart rate is good at any time at the mo - arrgghh just can't work it out lol. hmmm interesting - I will test and maybe take my t3 at other times to the T4 and maybe even try going back up to 20 as I should be and see how it goes. Many thanks, Sarah xxx
I did get my echocardiogram this evening but no results as of yet as wasn't with the doc and she couldn't really say much but she would admit that she would have called the doctor straight away if something really really sinister and said she won't be calling him!
I took the T3 again this evening and it didn't seem to make my heart race and head hurt as much as the T4 again but my arms hurting so bad now lol - I'm just a confused mess. Anyway - have a proper thryoid blood test booked for the morning as had a random endo blood test form lying about that I hadn't got round to doing so will have a test result that's 24 hours after T4 and 12 hours after T3 to make you happy
I'm almost too tired to feel anxious I messed up though with my brain so unfunctional - realised I took biotin yesterday so had to cancel the blood test this morning - I'm soooo so annoyed with myself as really wanted to talk to endo this week. I'm beginning to think maybe you were right with the T4/T3 - I don't think the swap over to more T4 is working as well for me as I had thought and I have been getting worse since I swapped over to more t4 and I'm definitely so much worse after the T4 each morning. Thanks again
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and did get some funny cramping and feet pulsating even more. However, when I got my test results back the next day - it had actually increased somehow to the above result. I'd probably only taken one bottle of the lower dose one earlier in 2020 so actually had gone up for once so figured probably not the answer.
Really need help 
Hi everyone need your help feeling really down
I really need some help
I need your advice please help what should I do!!!!
