I know I’ve posted so much lately but I’m really struggling. The anxiety I feel is just horrific, I’ve just finished work and I’m on tender hooks and there’s no way I can sleep the way I feel right now. I’m thinking maybe I need to go back down to my previous dose as I can not deal with this amount of anxiety. I think I’d rather feel tired than this anxious. My chest is so tight I feel like I’m gonna worry myself into a heart attack. My stomach won’t stop being bloated but then I keep eating rubbish because I’m so down. I have had a lot of stress lately but I literally look pregnant I’m that bloated it’s ridiculous. I know my bloods are looking better now albeit slightly rubbish conversion. My ear just made a weird noise and even that’s freaking me out. Everything is just jumping to the worst case scenario and it’s getting a joke. I wasn’t this bad on sertraline but I don’t want to go back on it because it gives me ectopic heart beats. They are all bad. I have pain in my throat which feels like it getting worse. I don’t wanna live like this anymore. I’m 40 and I just think what am I gonna be like when I get to 60 am I gonna worry myself to an early grave. I’m getting to the point I can’t cope. I’m hypersensitive to every bodily sensation it’s awful.
severe anxiety with increase: I know I’ve posted... - Thyroid UK
severe anxiety with increase
Dear Cade83, I can’t enter into a conversation at the moment because I am having issues of my own. However I feel I cannot ignore someone clearly suffering. I have looked at your previous posts and I think I have replied somewhere in there. Your posts are full of stress and anxiety, so clearly this is something you need to address, with priority. I don’t think we are very good in the UK dealing with stress/anxiety.
Did you stop the sertraline at a good time? How long has it been since you stopped? Did you run it down gradually (very important)? Did you start your thyroid meds around, before, during, or soon after running down the sertraline? All so important, as new thyroid meds and dealing with coming off sertraline is almost bound to upset the body! Being ‘unsteady’ on one medication whilst dealing with another new medication is a recipe for giving yourself a very hard time!
Hypothyroidism definitely creates stress and anxiety itself. My sense is (after years) it’s not chicken or egg. It’s hypothyroidism, even years and years before diagnosis.
Was there a dose of thyroid meds you were happy-ish on?
Are you moving too fast in desperation? This will almost certainly create anxiety and an upset body. You may need to go back to a dose you were happy-ish on and stick with it for a while. I have recently done six months on a dose I was happy-ish on, at least I knew my body would cope with it. I knew it could not be forever but so far its worked. It allowed me to make preparations and proper observations for necessary change at a time when I/my body was more ready to cope and most importantly, it has mostly addressed anxiety - not completely because I still need to sort out my medication too.
I hope this addresses some of your issues. This is not an easy process for those of us who reach the forum. We are a group of people who want to get well, in the face of medical ignorance.
Basically go for steadiness first. If you are anything like me this is the last piece of advice you will want to hear!
Thank you for your reply Tistapple, Yeah I have had a lot going on at the moment with health, surgeries, and so on so it’s been a stressful 10 months.
I stopped sertraline after 6 years because I was in a great place, I’d only been taking about 6mg after cutting a 50mg tablet in half 3 times for quite a few months. I stopped sertraline over a year ago now so it’s been well out of my system by now. I’ve been on levothyroxine for around 5 years I think.
I’m not really sure about having had a dose I was happy on. Everything just seems to be going downhill at the moment. I’m sure I will get there though eventually.
Happy-ish Cade83. Not happy. I found over-reaching for a really good result was destructive in itself. I hope you get this sorted out soon. It’s exhausting otherwise. You just can’t be yourself. Honestly I have been ill for so long I had lost any idea who I really was. I feel I am getting to know this person. She’s ok and still wants to improve! I wish you the same.
Hi , I’m so sorry you feel this way. Have you had a thyroid ultrasound. I have chronic thyroiditis ( subacute ) with normal bloods .. apparently my body is so sensitive to slight thyroid fluctuations… I had severe anxiety , nausea , emotional
Lability , jittery jelly legs , ear pain and jaw and throat pain and tight chest .
They put me on neomercazole and it made me feel so much better. Bloods don’t always tell the story …
Have you increased your thyroid meds ? I’d say if you have then you may be overactive for you and your body. I even said to the Endo .. are you sure it’s not in my head and he said definitely NOT . Look at your ultrasound..
So I’d probably speak to your doctor and get an ultrasound and maybe redo bloods and maybe you need to reduce your meds just in case and see how you feel
No I’ve been wanting a thyroid ultrasound for ages but when I get my neck checked they say it’s fine. I’ve literally just woken up and even my dreams were full of anxiety and woke up so anxious. I’ve just looked up neomercazole and that’s if your hyperthyroid? Maybe I just need to come back down but I really do think I need an ultrasound of my thyroid.
I increased by 12.5mcg exactly 6 weeks ago today.
I’ll get a drs appointment today and try and get a thyroid ultrasound.
Can you clear this up for me does the anxiety attacks happen constantly or do you go for a period of time when you don’t have anxiety?
From what you are saying it really does sound like over medication but without your full TSH, T4 and T3 recent bloods it’s hard to analyse. Why did your Dr increase your meditation. Are you on levothyroxine or liothyronine or both. It’d be interesting to check if you’re converting well enough from T4 to the most important hormone T3. I’m very sorry to read you’re having such difficulties. Maybe your increase is too much. Maybe alternate with your increase. Or maybe return to your previous dose.
My last TSH was 0.516 range 0.27-4.2
T3 4.6 range 3.1-6.8
T4 18.7 range 12-22
So conversion is a bit rubbish. I increased because I was so fatigued and I did feel anxious but anxiety now is horrific at times. I’m only on levothyroxine. At this point I’m not sure what to do. Maybe go back down I’m not sure.
I’m very surprised a Dr increased your levothyroxine dose with your levels. Why on earth would they increase. Your T4 was healthy and TSH very low and any increase at that point would certainly suppress your TSH by pushing your T4 level over medicated I my humble opinion. T3 is not brilliant but not too low. My T3 was 3.9 (range 3.7 - 6.0) when I was very unwell. I think you shouldn’t be on the increase but you could do with a small dose of T3 liothyronine. Do you check your vitamins D, B12, ferritin and folate. They all need to be optimal to help improve your T4 to T3 conversion. Reduce levo. Concentrate on vitamins and if things don’t improve request T3 medication by seeing an endocrinologist. NHS probably won’t help though so private only is a good option for fast diagnosis and getting a T3 trial.
Really to get the T3 optimal it should be at least 5.5 (top 1/3 of range 5.5 - 6.8) so you are well below this, your TSH could go lower (0.2 - 0.5 was what my endo aimed for) and t4 is in range. I suspect your problem is down to under medication not over medication. I had a lot of anxiety until I switched to NDT (my conversion was very poor on Levothyroxine - I felt awful on it at any dose) and got the t3 levels optimal and it went away along with heart pains. Anxiety can be a symptom of hypothyroidism or not being properly optimised. You could try another increase of levo to get there but might need to go up very slowly, given how you feel now. Anxiety is horrible so I’m sorry you’re feeling so bad. I hope you find a resolution.
Hello - I suffer with severe anxiety too and had to bite the bullet and go to the doctors to address the issue as I just couldn't handle it anymore. I've suffered with anxiety since a teen and tried to deal with it myself as it just wasn't spoken about back then or even now especially in the workplace. I'm 50 and my GP told me being perimenopausal can exacerbate anxiety, she's put me on sertraline and I've had a couple of CBT sessions which helped slightly but I didn't feel I could put a finger on why I get anxiety as it is so generalised. I mentioned to the GP I know anxiety is linked to an underactive thyroid and she played it down saying I am just a naturally nervous person which is BS!! You definitely need to go back to the doctors and maybe do a couple of your own blood tests to check your thyroid - when I was over I was very very jittery and a mess. It takes me about 6 months to settle on Levo when I change the dose of the meds and I feel dreadful during that time. Best of luck - Jo xx
There’s no way I’m going back on sertraline. Antidepressants can cause heart problems. If you Google can sertraline cause heart problems it actually says sertraline can make your heart beat faster or cause an irregular heartbeat and that’s nhs. I had so many more ectopic heart beats on sertraline and I’m 99% convinced duloxetine started them. After I stopped sertraline I felt amazing and I was in such a great place but I have to admit the last 10 months have been slowing going down and down. I think I’ll look into doing some more tests. Thank you and I hope your anxiety continues to improve. Cade x
Thank you - I'm sticking with Sertraline for the time being and have only been on it since May. The side effects were horrible especially stomach issues and insomnia, I'm nearly through the other side and it has definitely helping with the extreme anxiety I was experiencing such as severe anxiety talking 1:1 to people, getting breathless all the time and worrying about everything. It's not perfect and I miss being able to sleep in as it wakes me about 5am every day but it's helping me cope with every day life.
To be fair sertraline is awesome for anxiety I had it non stop before sertraline and it stopped pretty much instantly but the nausea was awful for the first 2 weeks. Thankful apart from last night I haven’t had problems sleeping. Once I’m asleep that’s pretty much it. I hope it levels out though and you can sleep.
Cade hello, you are really going through it. Awful.
I'm going from 75 to 100 at the moment, just under three weeks in, anxiety and bloating and headaches. Not as bad as your symptoms but wanted to say, I have a glimmer of how it feels.
I've been trying to find any cofactor blood results in your earlier posts, vit d, b12 and folate, ferritin. Do you have any?
Sorry if I've missed them. As I keep reading here that all these need to be at certain levels in order for levo to work.
Adrenals is something I'm wondering for myself. I'm about to buy a saliva cortisol and dhea test from Regenerus, as it seems they're the most recommended here.
I think posthinking01 is right to flag up adrenals for you, and there are glandular supplements and other things to help with adrenals. It's the line of investigation I'm putting myself on now.
What I don't know anything about is how adrenal supplements affect heart issues so if you go down that route, I'd recommend a Dr to ok it.
It may be you need to drop back while you test further and post the results here.
It sounds like the tai chi did something good. I tried it once but found it hard to follow, so I've taken to moving slowlyas my body feels like it wants to (looks like some bizarre octopus writhing around on a gym mat) but am finding it so useful right now - I reckon since levo increase upregulates our systems, maybe we need to discharge some of the nervous energy by moving - otherwise it'll end up in our heads as worry 😟 bleeeurgh horrible!
Just my rambling take. But I do think our bodies are designed to move,and when we're unwell and tired we forget that.
I think I'll stop there for now before I crash my own energy car 😊. I hope something I've said helps.
Sending you my best wishes.
Hi I am sorry that you are feeling like this - I am no Doctor obviously but just someone who has experienced exactly the same problems - in my opinion it seems that you are on too much thyroid medication. What are you taking and the amount would help to know.
Well done on coming off Sertraline that must have been difficult in itself. Whenever I tried to increase my thyroid meds exactly the same thing happened and it is really frightening as you describe. You have increased your metabolism and you have in my opinion put a strain on your adrenal glands that need to help with the increase - the bloating - the anxiety - the eating more - difficulty sleeping are all adrenal related. There are a lot of things you can do to support the adrenals to help them but that would mean coming back down again to your original dose and that would need running past your Dr.
I am someone who has/had adrenal insufficiency so unfortunately do know a bit about the adrenal gland and its functions and symptoms of overload.
Hope this helps.
Thanks that helps. To be honest I never ask my gp anymore I just go up or down and see what works best for me and get them to do bloods although it’s pointless cause they only do TSH which is useless by itself as you know so I do bloods with Thriva.
I am on liquid levo as I am lactose intolerant - so I can easily adjust my medication - so I do the same - if I try something and it doesn't make me feel better than something is obviously not right. You might not be converting to T3 - what other drugs or supplements do you take as that can also cause problems. Once I have this info I can probably help with things you can do to get the adrenals working better without stressing them which sounds like you are doing at the moment.
I’ve never heard of liquid form, can you get that prescribed? I’m also taking 200mg magnesium, B complex and vitamin D3 but I take them at night and take my levo in the morning.
B complex should never be taken later than 4 pm - it is an adrenal stimulant and it will wire you with adrenaline while you are asleep!
Hi cade83. I used to take vitamin d3 late night. Initially I was ok with it but after few months I found it difficult to fall to sleep. Also my heart would start beating fast. Not sure if it's effecting you in the same way but something to look into.
That’s interesting but I’ve always taken the vitamins at night and never really have any problem sleeping cause I’m always so exhausted by the time I go sleep. So sleep has never been a problem.
Hi - the exhaustion could be that you are overloading your kidneys and over stimulating your adrenals glands during the night. Let us know how you get on with changing the time you take them - see if you feel better you should.
Can't find a post on here that I did several days ago - D3 interferes with melatonin which would affect sleep and other things. Also whilst writing I found when on too high a dose of Vitamin C that I was perspiring so much and very anxious - I found out that too much can turn into adrenaline - Vitamin C and adrenals are connected. Just shows you have to be careful what you take and when. When you take things at night - the body is at rest and therefore your metabolism is slowed - to take supplements which would be just lying around (so to speak) and not even being diluted by drinks of water or tea etc. is not a good idea - the liver and kidneys has to clear all we take in the way of drugs and supplements so need to be taken during the day and not later than 4.00 p.m.
That’s really interesting. I don’t take vitamin C though but I do take all my vitamins before bed so maybe in need to start taking them couple hours after levo. Thank you for researching for info 🙂
I’ve just tested positive for covid so I’m fuming right now. I work in a pub so go figures. Probably one of the worst places to work for catching covid.
I had to shield for over two years - never went out - as I have Lupus/adrenal insufficiency and autoimmune thyroid issue - especially as I hadn't had the vaccination. Then went down with Covid in February - I followed my own protocol I had ready just in case and got through it although it took two weeks and was not pleasant - I was so pleased I didn't need to go to hospital - I have had Sepsis twice due to an UTI - so was very worried. Don't worry about the pains in your legs etc. - just take whatever they recommend - but remember that pain is your immune system fighting the virus without those pains we wouldn't be here. One way of looking at it ! Hope you feel better soon.
Yeah when covid hit I pretty much had to shield as well as my partner at the time has HIV so I would literally go out just for food shopping and that’s it. Was horrendous time. I had the first 2 vaccines although I’m not sure I would have given the choice now but hey ho can’t change it now. It’s good you got through it without the vaccines though although not sure they even do much to be honest. I always used to think it was down to the persons own immune system and nothing to do with the vaccine. Who knows. Thank you.
Sorry to butt in but I’m interested in liquid thyroxine. I think I’m glucose intolerant. Will all GPS prescribe liquid. I guess only if it’s not too expensive
No problem - OMG yes it is expensive - although it might have gone down now but it was/is £80.00 a bottle but............if you are diabetic or lactose intolerant then you should have it prescribed. I will see if I can find out how much the liquid is now from my pharmacist. Will get back to you on that particular item.
sidneymark 70 and Cade83 - just found out the price of liquid it is still over £80.00 a bottle which only lasts two weeks !!! However if you have problems with sugar i.e. diabetic or lactose intolerant - then you are entitled to it. However, there are also some instances where it has been advised that a patient is given oral solution if other brands are not suiting them. Give me some time and I will find the official directive which might help you.
I suspect that this is not the case about diabetic or lactose-intolerant.
Aristo levothyroxine tablets contain no form of sugar. No lactose. No mannitol. No glucose. No sucrose.
If the prescriber knows about levothyroxine products, they would be an obvious choice ahead of oral solutions. Especially as they are of the order of one fiftieth the price!
And, while acacia and mannitol might be unacceptable to some, Teva are without lactose and mannitol is not usually regarded as an issue for diabetes.
Thanks Helvella. Good to know about the Levothyroxine I’m taking - I take Teva but I’m still really exhausted on it.
Well that is a good thing about Aristo and I suspect this is a new brand/technical spec as not heard of them. Obviously if these are now available then it is prudent for the prescriber to offer this product - the oral solution was a life saver for me but it never sat easily with me the cost involved believe me. I might even switch to this product if possible I will need to check them out. Mannitol is not an ingredient I would like to take as when you dig deep about what it can do to the human body - it is a no no for me !
Aristo levothyroxine has been available in the UK since early 2020.
(Only 100 microgram dose, so far.)
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
helvella.blogspot.com/p/hel...
That's a shame that it is only 100 mcg - as I need to up dose or down dose on a regular basis depending on the temperature as I have a problem with my body temperature control system - with liquid is easy to regulate. Thanks for the info though.
The tablets readily split in two - just by slight finger pressure.
And we keep hoping further dosages will soon be available. The company has said they are intending to launch them sometime.
Let's hope so but I only need to up and down dose by say 10 mcg here and there - as my adrenals would then get involved - bit complicated but works for me. When it is cold I need more but when hot I need to take it down.
Hello posthinking01,
I'm interested in you mentioning bloating as an adrenal issue when raising levo as I've not linked the two.
What was your experience? Did it come on suddenly?
Bloating sucks!
Will answer later as looking for some research for you.
oh thanks!😀
Hi posthinking01,
A gentle wondering about any research you might have uncovered, I'm very eager for any nuggets.
If you aren't well or any other reason, don't reply, I will understand completely!
🌸
Hi how thoughtful of you - I am permanently unwell but still breathing (in jest !) so will always try to help where I can - been where you all are and anything I can do to impart knowledge I have gleaned over 25 years is a pleasure- I am trying to find something re cortical processing but sometimes it may have been one line in a paragraph of book I was reading but will find it - take care.
I really appreciate you replying, and there is no rush. You take care too😊
My last TSH was 0.516 range 0.27-4.2
T3 4.6 range 3.1-6.8. (40.54% through reference range)
T4 18.7 range 12-22. (67% ditto. )
Are you still taking 100mcg levo?
Were you on a steady dose of levo for at least 6 weeks before this last test?
Did you test close to 9am and at least an hour away from food and drinks?
Your FT3 is too low...your symptoms very likely reflect this
Both Frees should be approaching 75% through respective ref ranges
Have you optimised vit D, vit B12, folate and ferritin to support thyroid function...If not address this.
Suggest you ask for an increase to 125mcg levo....it may, or may not help but it's the next step along the way.
Remain on 125mcg for 6 weeks and re-test
The new labs will point the way forward
Your GP will probably start spouting nonsense about suppressed TSH.....it is not a reliable marker!
thyroidpatients.ca/2021/07/...
bmcendocrdisord.biomedcentr...
FT3 followed by FT4 are the important readings
T3 is the active thyroid hormone and for good health almost every cell in the body needs to be saturated with it.
Low cellular T3 = impaired health/ possibility of numerous symptoms
thyroiduk.org/if-you-are-un...
Raising your levo and optimising essential nutrients may be enough to improve things.
If not you may need to add a little T3
Your anxiety is very possibly low T3 ( see the above symptoms list)
Post your new labs for advice
Good luck
I can’t say I’m happy with going up again. I feel like I’m over medicated. There’s so much to look into. My vitamins are optimal except folate which is normal but not optimal. Do do this I’d have to take 800mcg a day I think. I did try for a bit but was getting burning symptoms in my back and other areas which have calmed down now. It’s so complicated. Everything affects things so it’s hard to know what to do for the best.
So long as FT3 is in range you are highly unlikely to be overmedicated.
Did you feel symptomatic when you increased?
This is quite common....it happens because the body is initially happy to have more hormone then soon realises it's still not enough so symptoms return.
I realise how complicated and difficult it is and how much patience is involved in reaching a therapeutic dose.
We can only make suggestions and offer information based on experience ....hopefully you find something that resonates.
The collective knowledge here is extensive.
I would, however, suggest you are mindful of your FT3 level.
Hope you feel better soon
Hello
I’m sorry you are feeling so bad!! Sending hugs!
I’ve some advice to help you, having had these issues myself.
Firstly, start taking Ashwaganda. It’s brilliant! It’s an adaptogen and it really helps. Take 2x 1/2 tsp/day. You can increase it to 2x 1 tsp/day.
I recommend mindfulness meditation 2x/day. Even 1x helps. I personally love Master Stephen Co’s Pranic Healing meditations, they will make a huge difference to your wellbeing and help you heal, physically, mentally and emotionally.
Please do 5-10 mins of 4-7-8 breathing every day. This stimulates the vagus nerve, and helps you to relax, helps with sleep too.
You breathe in for the count of 4, hold it for the count of 7 and you breathe out for the count of 8 and start again. You set it for yourself how quickly you count. What matters is the ratio so keep the counting even.
Lastly, remember two things. Firstly. This too shall pass! Things will get better. Hang in there!
Secondly, feelings come from your thought in the moment. You are in charge of your thoughts and therefore your feelings. Instead of reacting, respond to situations. Be kind to yourself and be patient with yourself!
Eating a keto diet with intermittent fasting is a game changer! Look up videos of Dr Berg on YouTube, he’s a great expert who provides amazing advice.
Get well soon, you’ve got this!!
Hey awe thank you. I have heard of ashwaganda but always thought it was bad for people with thyroid problems.
I’ll have a look at Master Stephen Co’s Pranic Healing meditations, sounds good. I do try to do some breathing and it does actually help but I normally breath in as much as I can slowly and then let it out slowly as long as I can.
I really hope you’re right, this has been hell. I would just love to get back to normal. Whatever that is lol
My girlfriend always says about thoughts and about not reacting but responding.
I’ll also work on the diet but it’s hard when I’m tired and don’t have the energy to cook so I try and get healthy take away but I crave sweet stuff so much.
Thank you 🙂
Hi, have you check your levothyroxine brand, many companies replaced sweeteners with Manitol. Other countries have band it, but uk have not.
My anxiety levels hit the roof when I was on Teva, my heart was almost jumping out my chest, I felt total rubbish, crying all the time and not being able to focus on anything. I had years of stress but never reacted to it like I did when they changed the format. Now I will only take Mercury Pharma, as most other brands have it in or have been made with other tablets that contain it, I have tried almost all other brands. The symptoms creep up on you over a few months, so it’s hard to put your finger on the root cause. I hope this helps and you find a solution to your anxiety.
Has anyone experienced burning sensations in different parts of their body? I keep getting random burning, it used to be just my face, neck and head and now I get in in my legs as well and it’s really unnerving. I’ve read it could be an anxiety symptom but I’m pretty much calm. Well as calm as can be for me.
I know you didn't say feet only but...
This is my blog page about Burning Feet. You might find something helpful there.
helvella - Burning Feet
Hi Cade, I've mentioned (functional) b12 deficiency before but thought you might see similarities with my post from 7 years ago regarding burning, thyroid, and B12. healthunlocked.com/thyroidu...
The burning (and all my other issues that i thought were thyroid related) finally disappeared once I got on b12 injections - and that also enabled me to tolerate the dose of thyroid meds i needed.
Best wishes xxx
I completely forgot about that. I’ve literally just spent around 160 on tests for selenium, magnesium, zinc and saliva cortisol tests. What was the tests again for functional B12 deficiency? I know they were expensive but at this point I’m willing to do anything as this is really effecting my life right now to the point I don’t wanna be here. I’m not even living anymore. x
The tests are active B12, MMA, homocysteine and the two antibody (ab) tests: intrinsic factor (IF) ab & gastric parietal ab.
There is a (expensive) medichecks test that includes active b12, MMA, and IFAB, as well as a few other RBC and other markers.
medichecks.com/products/com...
My problem was that since i had been supplementing B12, everything came back "normal", and tablets would drive up B12 levels without helping symptoms. GP literally yelled at me. Neurologist totally ignored symptoms. I did private tests, and despite all 'normal' results, I just started injections on my own, bypassing the doctors, and the rest is history...
I did have to drastically drop my dose of T4/T3 until I was stabilized.
I can feel your pain through your posts and I really feel for you. I've been there and B12 (and getting on hydrocortisone for adrenal insufficiency) are the only reasons i'm still here to type this. X
And here is a comprehensive symptoms list b12deficiency.info/signs-an...
And the replies to this post on the PA forum are also highly relevant & full of great info
healthunlocked.com/pasoc/po...
Why so many tests for functional B12 deficiency? That really is expensive but I’m willing to do it if I’ll find out what’s causing all this. Means I’d have to stop my B complex for 2 weeks though. Yeah whatever is going on is really hard now. Compared to how I was feeling this time last year is just unrecognisable. I’m just not myself at all.
Two weeks will likely not be long enough, so i'd either just test now or ... (Are you planning to go through a doctor at all? If not... ) then well, I don't like suggesting this but you can also just start injections without tests. If you want suggestions on how to do this, just ask.
As for the tests:
Active B12 is sometimes more sensitive than serum b12.
MMA & homocysteine show if there's a problem with different b12 pathways and can show functional deficiency even when serum b12 / active b12 are normal.
The antibody tests are useful to see if it's autoimmune & those can be done anytime. Even after starting injections. But IFAB can be negative up to 50% of the time in those who truly do have pernicious anemia (autoimmune b12 deficiency), so it's also not a conclusive test. Lots of pitfalls with testing & why some people go undiagnosed for too long.
Yeah both mine are normal range and on the higher side. So what tests came back abnormal for you? Pfft if I went to my gp all they would say is your bloods are normal.
So no I won’t be but I also don’t like the idea of doing injections before I find out answers. B12 injections can’t be harder than testosterone injections though. I did one in my leg once during covid because I was afraid they stop doing injections so I thought I’d do it myself in my leg. Na way to thick for the leg. Couldn’t sit down properly for over a week and my knee swelled up lol was not impressed. Nurse watched me do it as well.
So if all tests are normal it’s not functional B12 deficiency? Pitfalls with everything I think.
ALL my test came back normal 🤷♀️😂 A few years after I developed issues, 2 more relatives developed B12D. One is like me, everything totally normal. The other is 70 and had one positive and one normal IFAB test, everything else normal. Both quickly got on injections when tablets were no longer effective, and thankfully never got as bad as me. So, I dunno what we have but it's definitely a sort of functional deficiency that these tests don't detect. But the diagnosis is in the 'clinical response' - all symptoms resolved on injections.
Ironically I learned to inject IM from a youtube video on injecting T. Your experience does not sound nice, sorry to hear that!
With B12 you can also do subcutaneous into tummy, thigh etc. It's not thick at all, just may sting sometimes. .
Yeah my GP literally yelled at me "Did you go to 7 years of medical school" 🤬 Couldn't drive home I was bawling so bad. So then I did private testing. Despite everything 'normal', all the symptoms fit, and i figured i had nothing to lose. B12 is not toxic even at very high doses.
Hi Cade83, sorry to hear you are suffering so badly. I have only scanned through the previous responses due to being short on time but just wanted to stress that this sounds very adrenal related. I had terrible terrible panic to the point of feeling suicidal before treating my adrenals. The thyroid meds can leave you feel like toxic sludge without enough cortisol. I had constant adrenaline dumps, just a complete wreck. It is absolutely essential to get it tested. Have you ever had your cortisol checked?
No I haven’t but I just got a cortisol saliva test through the post so I’ll do it next week when I’m covid free and I can post it.
I’ve actually just noticed. I have weird sensation in my lower legs and have just realised their cold and that could be the sensation which worries me that my brain doesn’t know my legs are cold just that it gives me a sensation instead. That isn’t the same as yesterday though because it was my thighs and they weren’t cold.
Yeah it’s like burning numbing sensation. Not as far as going to sleep though. If my thyroid hurts does that mean I’m taking too much thyroxine? I’m proper losing the will especially now I have covid on top. Having this weird feeling in my chest as well and the pain in my neck at the front sometimes really throbs. Just wondering if I’m taking too much. Maybe it is cortisol problem and once that’s sorted I won’t need the 100mcg. My mum is only on 50mcg.
Hi, have you tried giving up caffeine. I was having physical anxiety symptoms but with no real stress in my life. I have given up caffeinated coffee and am trying not to watch any tense tv shows and I'm feeling a bit better.
I feel for you . I had it for 6 weeks after increasing from 50 to 75 levothyroxine . Was a nervous wreck. It should have subdued by now. I would seek help from GP.
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