I’m not really looking for advice but mainly for support and potentially some words to bolster my morale 😂 and maybe a slight ramble..
Finally started Armour last week and feeling ropey. The initial delight of finally finding a nice doctor and securing treatment has worn off and I’m left doubting that my mental health symptoms (the symptom that bothers me the most) will improve with treatment. It’s ridiculous because when I treated myself with thyrogold and got well I could see it all so clearly that I was just suffering with hypo symptoms. I’ve now been struggling with symptoms again since around March (maybe earlier) so it’s felt like a hard slog and struggling to see the light at the end of the tunnel. I also had to come off my meds for 8 weeks for testing which has written me off. I guess maybe my confusion and despair is a result of a very fragile hypo mind!
does anybody with mental health problems and hypo have any words of wisdom about how to differentiate and manage the overlap between physical and mental? I find it very hard when I’m in it to know whether it’s hypo symptoms or a crumbling mental health crisis.
Also I can’t seem to remember how long it took me to notice any differences in how I felt last time. I remember it being gradual and I know it takes time, lots of time. Does anyone have a rough idea how long it took them to feel any differences?
Would be great to hear from others who struggled with depression, low mood and anxiety as prominent symptoms of hypo. Or even if anyone has a lovely success story on Armour to give me some hope, I know I’m very early days!
Thanks in advance
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Beau55
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It's tough and slow to feel better on the hypo merry-go-round and I feel for you. You wrote I also had to come off my meds for 8 weeks for testing and I wonder if this is the reason why you're feeling so poorly ATM. No medic worth the name (and many are worthless tools ) would have you do this - it's a cruel experiment with little merit.
On the other hand... I won't have it any other way but this: we are all selectively deviant in our thinking and anyone who thinks otherwise lives on a different planet to me. Once you've swallowed that, it gets easier.
Look at you, diagnosing yourself with mental health symptoms...make no mistake, many suffer. Some put their hands up and ask for help and some struggle on, and have the occasional meltdown. Certainly 8 weeks off my meds would leave me in a very dark place.
There are those on our forum who think (deviance coming up) that all mental health problems suffered by thyroidies are related to not being on optimal thyroid medications. I can't agree.
Do not imagine that it is a signal of failure to need anti-depressant meds and thyroid meds. I take both. On the other hand, it may be worthwhile although onerous to get your thyroid meds and supplements in a row and then see how you're feeling. Best wishes and good luck xx
I haven't had a blood test for sometime now. On T3 it immediately resolved clinical symptoms I had and I feel my health is now 'normal'. Once when something was changed within the T3 I didn't feel well. That didn't last long thankfully as I was able to source another T3.
I follow the advice of Dr John Lowe (now deceased through an accident) and he was also a researcher/doctor/scientist and expert on the use of T3 and also an Adviser to TUK.
We are all so different in what dose suits us and I now get prescribed 20mcg of T3 daily. I take it when I awake and wait an hour before I eat.
I have also been diagnosed with an autoimmune condition called:-
Thank you Rapunzel, unfortunately I had been self medicating for years and slightly messed things up when I ran out of thyrogold and couldn’t get back on track, I was all over the place and had no idea how to fix it. I felt like I had no option and I can see why she asked me to come off as I was never officially diagnosed but it was a hard decision to make for sure but agreed as I wanted an answer.
I get you! I know you can have both at the same time and I agree. I’m currently on both venlafaxine and mirtazepine (7 years now) and was trying to reduce my doses prior to all this happening but had to increase again during this time for obvious reasons 😜 I just struggle because I try so hard to maintain my mental health and right now nothing is working which is making me feel hopeless and pinning all my hope on the thyroid meds helping, which also makes me feel helpless in case they don’t, catch 22!
Hi. I had depression a good few years ago, long before I got diagnosed as hypothyroid. There is a link as many people with undiagnosed thyroid problems got shipped off to mental hospitals. Hopefully that isn't a current situation. I think the danger is putting all your eggs in one basket. Hoping everything is hypo and once you get optimally medicated you'll feel on top if the world and all your issues will vanish.
I felt the same as I have Fibromyalgia which I really hoped was just untreated Hypo. Although being on Levo has improved some of my symptoms it certainly hadn't helped with all of them. And actually my exercise tolerance which pre Levo was really good, seems to have gotten worse.
So I've had to accept that some things aren't to do with being hypo. It's entirely possible to have low mood and be hypo and be optimally medicated. Mental health is down to lots of things, genetics, environment, childhood and formative years experiences, current circumstances. Throw in money worries, stress, anxiety, ill health and its easy to see why so many people struggle with MH. They wont all have thyroid issues though.
Of course the flip side is you've only just switched over to NDT and it needs time to work. Thyroid levels can be painfully slow to change. My FT3 was the same as yours in June and I've felt really rough physically, very low energy and so fatigued. I'm hoping when I next day that they'll have improved. I do feel less crappy so fingers crossed.
I'm just taking each day as it comes at the moment and trying not to be impatient or look too far down the road. And not wishing the time away, which I've been very guilty of. I really hope you get better and all your MH issues resolve themselves. But please be realistic and don't be hard on yourself if they don't.
Being diagnosed with depression regularly coincided with a lowering of the T4 dose for me. The depression disappears with the dose being upped again, but that often takes some time. It usually takes me some time to recover from ALL fallout of a lowered dose, often several months. To be taken off the meds completely for several months I would call cruel punishment for self medicating. I can not imagine the extent of suffering you have been exposed to. Please hang in there. I hope you'll be much better soon.
Thank you so much for your kind message, it gives me some hope to have patience with myself and that I’m bound to be feeling crap for what I’ve just been through. I think at times I’m really hard on myself for feeling this way but if it’s hormonal then I need to be kind and not beat myself up further.
I just need to try and keep my mind busy until my levels improve and have confidence I will feel better, it feels never ending at the moment.
Did you also find your depressive symptoms were linked with low levels? My thought processes feel non logical and my brain doesn’t seem to wonder onto anything other than how crap I’m feeling when I’m like this!
Only started armour last week so I have a long road ahead ☺️
Sarah, Thats a rotten thing your doc did to make you stop your thyroid meds for 8weeks! My oh my! Why oh why!!! It will take time to build those thyroid hormones back up and to have full impact on your body. So hang in there. Write yourself little positive messages on post its and stick in places you can see to remind yourself in your darker moments that life will get better.
Thank you so much for your kind message, it just helps having people who understand on here how hard it is! I have great support but I’m sure they are sick of my crying at this point 😂 I feel like I’m going around the bend most days but trying to keep positive and not get wrapped up in dark thoughts. When you have felt crap for so long it’s hard to even imagine feeling any different isn’t it but I’m sure as my levels increase I will have more energy to help my mental health.
What a lovely dog you have! I am sorry that you are feeling so rough but you will improve, I am certain of it. One of your earlier posts mentioned that you have B12 injections. Are you still having those and do you have a diagnosis or reason for deficiency? A B12 deficiency can cause anxiety and/or depression and you may not be getting enough. B12 metabolism is strongly genetic and I see that your grandmother also struggles with anxiety. Not all of this may be down to the thyroid although function can be B12 affected. I see you were low in folate and were talking of supplementing. Folate supplementation can mask the signs of a B12 deficiency so I am glad that you were already getting injections but sad that they hadn't already told you to try folate (mind you, they would have prescribed folic acid not folate and it doesn't work for everyone. I needed methylfolate, personally). The folate cycle and B12 are intricately linked so they cannot work well without both being at healthy levels. B12 testing is hopelessly inadequate but I guess you already know the pitfalls as you are getting some treatment. Many need to have more frequent injections, or self-inject, or supplement in between with sublinguals etc. Best wishes
Hello, thank you for your message! Yes he’s a sweetheart and is keeping me sane at the moment 😁 yes when I was trying to get diagnosed around 22 when my symptoms started, I had a low b12 and iron levels. I had an iron transfusion and when b12 tablets didn’t increase my levels they relented and let me get b12 injections 10 weekly. However I was negative for pernicious anemia and they weren’t too bothered about finding a cause, typical! I then suspected it was too do with my thyroid levels. They never checked my folate until now when I found a new doctor and found out I was deficient. I was a bit stupid and thought b12 injections included all the b vitamins so never gave it a second thought! I am now taking Methyl Folate tablets.
My grandma and dad also get b12 injections but are negative for pernicious anemia interestingly!
I think my biggest hurdle is figuring out if my mental health symptoms are linked to my physical state or not, I’ve struggled to manage them on two antidepressants. My mental health was great for a few years self medicating NDT so I’m hoping this current dip is related to being off it as I’ve run out of other options!
Having a gorgeous dog around will help no end! I just make a fuss of everyone else's!!
If B12 tablets didn't help you, it seems likely that you have a problem with your parietal cells. They produce stomach acid and intrinsic factor and you need both to get B12 into the blood. Pernicious Anaemia may show antibodies to intrinsic factor and/or parietal cells, but doesn't always. Gastric parietal cell antibodies can occur with thyroid disorders or Coeliac etc so not considered diagnostic for PA and not often tested. (Unfortunately B12 deficiency testing and PA testing are not great and people are often missed. You can do private testing of things like homocysteine and antibodies should that be an option, although I haven't.)
Without the stomach acid, you will struggle to absorb iron as well as get nutrients from food, as you won't break it down well.
I have one book where the doctor/author says that if you get enough B12/folate to resolve the deficiency (if identified early enough) you should not get PA, which is a late stage diagnosis of an autoimmune condition triggered by the genetic changes resulting from the lack of functioning B12/folate. Not sure if he's right but hoping so! I take a lot of sublingual B12 as my metabolism problem seems further along the process than yours. I can get it into the blood, but can't get it to work properly in the cells. I am the 5th generation of 6 (known) with PA or B12D and still trying to work out why it is happening so we can do something about it as early as possible. This doctor also says that low B12 can affect the membrane of the pituitary and stop the signalling working well, so the thyroid doesn't get the messages that it should and we can get a central/secondary hypo (or more rarely hyper).
Good that you are on methylfolate, might be worth adding a B complex as you may be low in all the Bs. Going back to your family and your low B12, it may be that you all have PA and diagnosis has just failed you so far, or it may be that you have some other metabolism problem (like mine - lots of possible genetic stuff in what is a complicated process) or that something else is affecting the parietal cells. These reduce in effectiveness with age anyway, but it could be gluten damage from either Coeliac or non-coeliac gluten sensitivity. Testing again is far from ideal so first thing is to get a Coeliac test if you haven't had one and are eating gluten, but don't assume you are ok with gluten if coeliac test is clear! Not so simple as that, sadly. Mine was clear and it was only when I stopped eating the stuff that I realised it had been a problem for me. (Anxiety is one of many symptoms commonly associated with gluten disorders of all kinds.) I really hope you can get to the bottom of it for all of you and that the thyroid meds will help you back onto an even keel so you can investigate further. Best wishes
Hi SarahAll the lovely knowledgeable people here have more than answered your post. I just want to add that I wish you well.
I can only empathise and add that I have never in my life felt so unlike myself, mentally and physically, since starting with symptoms in June last year. What a rollercoaster we are all on.
Thank you Pandora, it really does help just hearing other peoples descriptions as it makes me feel like I’m not so abnormal for feeling so crap mentally and maybe others feel the same. It’s very tricky trying to get a baseline of what are hypo symptoms and what are mental health. Have you managed to get on a medication to see any improvements?
Hi again SarahI began a trial of Levo (50mcg) in February. GP recommended Vit D daily too.
Began to feel better after the first month. But, symptoms of anxiety, depression and heaviness/weakness in legs returned with a vengeance after second month. Depressing in itself!
Had to wait another month for next blood test end of April. Levo upped to 75mcg in May. Felt the benefit for about 6 weeks. Had been going quite well but symptoms returning again since beginning of July - good days/bad days. Especially notice in the mornings. Hanging on for my next blood test mid August. Think I may need Levo upping again from all I read on this amazing site.
I would never have believed the impact, especially mentally.
I understand your need to separate out what is down to Hypo and what is underlying. I can only think that anything underlying is likely exacerbated by the thyroid issues anyway.
I had never suffered from anxiety etc before. Lucky!
For me it manifests as being erratic emotionally and dreading going anywhere - micro planning in advance to avoid panic setting in - whether it be queuing for a Covid jab or attending my son’s wedding. It is very heartening that twice now I have improved greatly on Levo and felt more like my old confident self. I cross my fingers that it can all be balanced out in time.
Ah I’m so sorry you are struggling, anxiety is very cruel as it steals all the joy out of life. I was the same as you, before I was poorly I could handle anything.. then the panic attacks began. It’s definitely the hardest aspect for me and is much the same as yours. I also dread going anywhere in case I have a panic attack and can’t leave. We have Mexico booked in September and normally I would be ecstatic but I am a nervous wreck at the thought. So you are not alone!
I know when I was well medicated on NDT I could look at the future with optimism so I am hoping this will change. I would definitely push for a dose increase if you can or if not try an increased dose yourself. I’m sure once you are on a good dose that things will improve! Have you checked your adrenals? I know from past experience my adrenals can cause a lot of panic/stress symptoms!
I literally just go off the phone with my GP telling her I am not functioning well with brain fog, low mood & fatigue. And that I can not wait for six more weeks to see the endocrinologist (she - the endocrinologist -does not believe in six weeks which I am at with this new Synthroid level - after a thyroidectomy. Funny what they pick & choose what to believe in scientifically. )
So you are not alone and I too wish you well for getting to the bottom of it all. All the best to you
Ah litatamon, I am sorry to hear you are low! It’s a dreadful feeling when you just want someone to be able to help but you know medical professionals won’t sympathise or do anything. I am sure this is why so many thyroid patients struggle mentally also, we are not believed or offered any empathy because they have no idea how awful this feels and the refuse to admit it’s even thyroid related!
Let me know how you get on with pushing for the dose increase please!
SarahElizaDavies sorry to hear things are so low for you just at the moment. For me I realise I am doing well when I DON’T think of my illness (still rare for me). I was reading a paper in which a rather famous endocrinologist, extremely derogatively in my opinion, referred to us unsatisfied patients as “ruminative”. As if we talked about our illness all the time!! Stupid man. Off course we talk about it all the time! Frankly it’s a SYMPTOM, not the indulgence as implied. I realise I bore the pants off anyone who will listen and most likely those who don’t (doctor?). It all adds to our disappointment in ourselves, especially when we really just can’t lift our heads. However, I call this ‘rumination’ my ‘monomania’. Children who feel they are not being listened to will sing and dance and make annoying noises either until they are heard, or not. This is not an effective form of communication especially between adults and even worse in a doctor/patient scenario. Same happens to us ill adults. I had four days on the trot last week, when I almost felt like what I think of as a ‘normal’ person. I did think there would be hell to pay but I tried to be a bit careful. Sure enough it was like switching off a light when it came. Three days now but not as bad as many times I have experienced. If this forum did not exist, God knows where we could take all this Sh1t. Off course other issues could be helping create depression but check the list of hypothyroid symptoms and depression is right there. For me (listen to Michael Rosen interview with the Thyroid Trust) it is a mixture of being unable to clearly express my rather emotionless exhausted state and who the hell is going to listen to it anyway. AND at the same time off course, dealing with our additional myriad symptoms. We are listening to each other.
I think you have just hit the nail on the head! When I’m well I don’t tend to have many thoughts, they seem free and mostly revolve around my day. When I get like this my thoughts feel illogical and I can’t seem to swim out from them no matter how much I try. It’s like being perpetually trapped inside my thoughts and I can’t escape despite my best efforts. I’ve always struggled to differentiate if it’s a result of low thyroid levels or if it’s something with my mental health. I also struggle to put it in words what is happening to explain to others which adds more frustration. I can tell when this ‘mode’ is coming on and it begins with feeling tired and heavy with a heavy feeling in my chest. I’ve spent a lot of time trying to figure it out and I just can’t, I then beat myself up for not being able to pull myself out or not understanding why it disappears when it does . Sorry mad ramblings..
I completely understand when you say you had four days like a normal person, it’s like a bubble pops and everything feels like it’s flowing.. just to cloud over again!
I will definitely watch the Michael Rosen interview thank you for the suggestion! I can deal with physical symptoms no problem but the confusion with the mental side of things is my biggest problem as I can’t seem to find a way to cope with it. I’m hoping when I’m better physically my nonsensical thought processes might be better 😃
Your post really resonated with me. I've had bad depression most of my life, and diagnosed with hypo in 1981. I always thought my poor mental health was just down to my hypo although I'm certain that hypo undermedication affects it badly. A few years ago I paid for the DIO2 gene test & it returned as positive for heterozygous (mutated gene from one parent). During the requisite counselling I was told that a mutated thyroid gene (DIO2) is very frequently linked to a mutated MTHFR gene. M stands for Methylation and it is complicated. So I have been taking the Methylated version of multi B vitamins, which include methylcobalamin (B12) and methylfolate (B9). So folic acid, the artifical form of folate (B9) is a no no; as is cobalamin (B12). So I have managed to discover that my hypo and mental health are two different mutated genes. However I have been taking anti depressants for decades and cannot manage to come off them. About 6 weeks ago I started cutting the 25mg tablets in half, and in the last week or so I have plumetted, so back onto the full tablet now. The methylated multi B vitamins have definitely helped my mental health, that's the reason I thought I could halve my anti depressants!
Hi Marigold, thank you for your reply! That’s fascinating regarding your DIO2 test and MTHFR, did you manage to confirm the MTHFR diagnosis? I was looking into this not long ago but wondered if it was even beneficial for me to know, but may explain some of my low nutrients perhaps. It all feels so overwhelming trying to find out what the root cause is hey. I am also diagnosed as having POTS which I am told has an underlying cause which can be to do with homocysteine levels!
I have just started trying to increase my folate levels so who knows if it’ll help me 😃 I may try get tested for MTHFR as it would be useful to know for future
Hi Marigold, just an update - I actually had my dna sent off a few years ago for ancestry and I learnt on the Paul Robinson website I can use my raw dna to check for DI02 and MTHFR. I checked yesterday and I am homozygous for DI02 and I have the MTHFR mutation too! I just wanted to say Thank you for the advice it is very helpful to know ☺️
SarahElizaDavies I would say the confusion is the most distressing symptom (for me). I don’t know if everybody gets it. I would love to know. However I really don’t think we are alone with that symptom. Luckily it’s not all the time but overwhelming when its here. For me, reading the down to Earth advice of our administrators and others when they get direct questions about tests, meds, vitamins, rake out research papers, supply their personal roads to here etc and the fact that they have survived; it all gives me hope.
I was taken off Armour and put on Levo/Synthroid. In the course of four months, I started withdrawing from everything, and finally got to where I just stopped wanting to live. FINALLY got a new doc to listen, and let me self-adjust my dosage until I got my self back. FIND ANOTHER DOCTOR! When you feel like crap, this is almost impossible, so I hope you have a friend to help you keep going until you find someone who will listen. Don't give up!!! Keep fighting!!!! You will be able to help all the people who are steps behind you in this journey. <3
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