Slight off topic. Medication : Sorry this is... - Thyroid UK

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Slight off topic. Medication

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Sorry this is slightly off topic, I was just wondering what others would do in my shoes. I am feeling confused at what to do.

I went on Mirtzapine/Remeron in May 2013, 8 months after I was attacked by my brother. My mother and sisters cut me out and made my life hell because I wouldn't forgive him and I was in a terrible place. I'd also lost my grandmother a few months before. I am so against meds but after trying a couple that landed me in an ambulance and a nasty reaction my only choice was Mirtazapine. I was agoraphobic, I never slept a wink and if I did catch an hour I'd have nightmares, I was an anxious wreck and couldn't take care of my children, hubby had to work from home at one point. I agreed to try the meds but at a low dose. I went on 7.5mg, I slept, ate and life was good again. Then in December 2013 my mum was getting married on Christmas Eve, she wanted us to have a fresh start and wanted me at her wedding, I had a sister hurling abuse at me if I didn't go etc... I had a major anxiety relapse. I was then told to up to the 15mg, which is the lowest dose. I felt better within a few weeks and since then I have been calm, so laid back with my children where as I had been an anxious wreck and couldn't function. I ate at last and gained a much needed 2 stone. (I was a painful 6 stone or less). I slept well and generally they did me the world of good.

I never had any side effects to my knowledge. My GP kept an eye on my weight as they do cause weight gain but it was needed in my case. It raised my cholesterol slightly but my GP said that could have been family related as it runs through my mums side, also it's a hypot symptom. I did however feel very tired in the mornings, well like a drugged up zombie haha but I could function and felt fine after a few hours. I never felt ill just foggy headed and sedated. I never felt fatigued like I do now. Then August 2015 I felt very tired, I had a few months before but not constant, I then went through the stress with my son being badly bullied and he was suicidal and wham my fatigue worsened to the point I was dizzy, weak and couldn't walk around. My GP diagnosed stress and told me I needed rest and probably therapy to help me through yet another traumatic time. My son is fine now by the way. I asked my GP then could I wean off Mirtazapine incase it was causing any fatigue issues and he said it was the wrong time.

January 2016 diagnosed subclinical and by May 2016 hypo and given thyrorxine 25mg (Tsh was 9.28 FT4 14) . I started 50mg levo in September and am due a blood test at the end of this month. My fatigue did start to lift but recently after a very bad anxiety relapse over December (again due to family contact and Christmas upsetting me) my fatigue has returned along with leg weakness. GP ran a whole set of bloods 2 months ago just to rule out any other fatigue causes and all ok. This fatigue has hit again about 3 weeks ago during the anxiety setback last month, I am coming out of that anxiety now but have been left with this awful fatigue. I wake in the morning, I have dizzy eyes, foggy head, weak legs and fatigue all over which lasts all day, along with some unreality due to how sedated I feel. It's horrible and raises my anxiety levels, I just hate feeling so weak and fatigued. This last year since the ill health started my anxiety came flooding back as did the agoraphobia all due to how weak and fatigued I have been, and hiding away at home I became socially anxious. Thankfully I've a wonderful husband and children that keep me smiling and I love my life despite this. I am just fed up of waking up every day feeling so weak and fatigued. I feel too ill to do anything. I had started doing housework again, walking my dog alone for 10 minutes, yoga.... but now I am back to this sheer exhaustion and body weakness.

I spoke to my husband and friend about withdrawing from Mirtazapine and they both think right now is the wrong time. I am only just coming through a setback, I have had a very tough year, GP is still trying to get me on a theraputic dose of levo and they think my GP will agree right now is not the right time. I have gone back to therapy to help me with the past traumas and anxiety which I know will help me a lot. I stopped therapy last year as i felt too unwell to cope with it, I was too tired lol!

I just sometimes worry Mirtazapine as it is a sedative it could be adding to my fatigue but my hubby says after 2 years it wouldn't suddenly cause chronic fatigue and I have to accept this fatigue I have had the last year is all due to stress/trauma that has caught up with me and the hypothyroidism. My GP has told me I have chronic fatigue and the thyroid illness and I have to trust that would cause this awful crippling fatigue and weakness. I just felt a little better in the autumn and now I am back to crippling fatigue daily I am beating myself up and maybe looking for something to blame.

My husband and friend also said they remember how traumatised I was 4 years ago and how severe my anxiety was and now I am relaxed (believe it or not, it's just my mind that races), I am happier and content, I sleep amazingly and love to eat. I challenged them and said that now I have anxiety and agoraphobia again why hasn't it helped but like they said being ill with fatigue and weakness will have brought all those things back as I lost my confidence as at one point i was bed ridden with fatigue. I can now function but some days I am more tired than others. I just wonder if after over 3 years I should still take the drug. I have heard withdrawals are nasty so maybe right now adding that into the mix is not a good idea. I just hate feeling this fatigued and unreal due to how foggy headed I feel. Maybe it's all hypo related and I am blaming this drug and adding another problem that's not there.

In my shoes what would you do? The trauma is behind me but I still have ongoing turmoil due to the situation with my mum hurting me and in and out of my life and sister that still tries to contact me on birthdays so she can see my children (or demands to see them). Other than that though things are behind me and I have stayed strong and made sure I have minimal contact with them. I am too exhausted to think what's for the best with my medication, they say you should be stable on them 6 months before you withdraw but that won't ever happen if I stay this chronically fatigued lol!

Sorry for the ramble, this predicament keeps going around and around in my head and I can't decide what to do and whether I should just focus on my thyroid right now. I just can't stop worrying it's worsening my fatigue and making me sluggish. Maybe I just need a huge slap ;-)

Julie

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19 Replies
shaws profile image
shawsAdministrator

I think due to the fact that your husband and friend have recommended that you stay on Mirtazapine for the present, they know you very well and seem very supportive to you that they would be best placed to advise.

However, due to you being diagnosed with hypothyroidism, fatigue is a clinical symptom. I shall give you a link and you will see how actually how many symptoms (of course we don't get them all - but maybe a few).

So it is important to get to a good dose of levothyroxine, sufficient that will give you a decent amount of T3 in your body. T3 is the Active thyroid ormone required in our receptor cells. Our body contains billions and the brain contains most. So if we don't have sufficient Free T4 and Free T3 circulating in our bodies we may well get unpleasant symptoms. Ask doctor if he would please check FT3 and FT4 (they don't usually) but I'll give you a link which might be help if you tick off your symptoms and discuss with GP.

thyroiduk.org.uk/tuk/about_...

from the link below you will see why Free T4 and Free T3 are important and you doctor may ask for these to be tested. Sometimes they are restricted by the hospital.

thyroiduk.org.uk/tuk/testin...

You can tell your doctor that you've taken advice from the NHS Choices for information about Thyroid Gland Problems.

in reply to shaws

Thank you Shaws

I probably am barking up the wrong tree and it is all hypo related and once on a higher dose I shall be ok. I am doing my blood test next week so we shall see what the GP thinks and whether I need an increase, I suspect I do.

Thank you for the links.

Julie

VulpusVulpus profile image
VulpusVulpus

Hi Jingy, I remember from your last post that you're still hypo? I'm sure this is the reason for feeling fatigued (or I should just say: what Shaw's said...).

I believe that Mirtazapine has an antihistamine effect, so similar to me taking piriton which would knock me out. However, the antihistamine efect should wear off after a couple of weeks. So if you were on an effective dose of levo, the fatigue should be better.

I just think that you sound so in control and well-balanced and it's a hopefully a hypo symptom. xxx

in reply to VulpusVulpus

Thank you

Yes you're right it does have a histamine effect. So it causes sedation and is used as a sleep aid, it does wonders for my sleep.

I maybe barking up the wrong tree and like Shaws has said it's all just finding the right dose of levo and this will lift. I am just so desperate I guess. I do feel very incontrol and calmer since on the mirtazapine, I just worry should I stay on it long term. I still suffer anxiety and agoraphobia but I had overcome it with the help of mirtazapine until my health deteriorated and it came flooding back, maybe even worse than ever.

Thank you

Julie

shaws profile image
shawsAdministrator in reply to

Few doctors (labs) test FT4 and FT3 which is a pity as it gives more info than T4 and T3.

in reply to shaws

I have my FT4 and Ft3 tested with medicheck. When I got diagnosed last May my TSH was 9.28, Ft4 was about 15 (range 12-22) Ft3 5.6 (3.1-6.8 i think range was). Recently TSH 2.6, FT4 19 and Ft3 5.3.

shaws profile image
shawsAdministrator in reply to

TSH is a bit on the high side but frees good.

in reply to shaws

I have a sneaky feeling that TSH has crept up. That was November when tested and was 2.6. GP wants me to re test end of January.

VulpusVulpus profile image
VulpusVulpus in reply to

Then stay on it. The histamine effect should be short lived - not years (hopefully). :0)

When I'm hypo or having a Hashi's attack, the anxiety comes back. I can deal with it but anxiety is also another godawful symptom of a wonky thyroid.

I knew exactly when to come off my ADs. Everything was calm and settled and I knew I could do well enough without them. I was on them for 5 years and it took me almost a year to come off them so, so slowly.

When your health/thyroid has stabilised, consider it then but in the meantime, carry on; they seem to be helping you be you (if that makes sense).

in reply to VulpusVulpus

THank you for helping me, I feel like a weight is coming off my shoulders for posting here, I have been thrashing my mind with this worry.

I just broke down sobbing. I have felt weak all day in my legs and body, dizzy head, woozy foggy head, fatigue all over. Lately when i climb the stairs I even feel I need a sit down. This level of fatigue had lifted but recently it's come back and I have been sobbing tonight worried I am dying or something :-( Worried that it's more than my thyroid causing this exhaustion.

Sorry to be so depressing lol! I have been on levo 50mg since September last year, prior to that I was on 25mg from the May. I know it's early days, I am just so worried feeling this fatigued and weak all of the time. I did have an anxiety setback/breakdown over Christmas as my family got intouch and it triggered severe anxiety again. I have had anxiety again for a year since this chronic fatigue nad ill health began but it worsened suddenly in DEcember, pressure to be well for Christmas, seeing my extended family etc.... it's always a time of year I trigger because of family. Since the setback, even though I am coming out of it now my fatigue worsened a lot. It had picked up on the 50mg and I felt well. So my husband and friend think my fatigue is due to the stress my body has been under. I just can't believe hypo or stress could cause such severe fatigue and weakness, i feel awful. I told my GP many times last year and he just blamed the hypo and chronic fatigue. He ran a huge list of bloods in November and all good so he said I have nothing to worry about other than what we know I have. I still worry. loL!

Thank you for being so kind. I am finding all of this so hard to cope with, I have 3 children and no support other than hubby but he works long hours so I am coping with ill health, anxiety, agoraphobia and still having to be a mum, do the school runs etc..

Julie

VulpusVulpus profile image
VulpusVulpus in reply to

(((((Julie))))), I have a decent support network in that I can call my mum if I need her to pick up the children. I really feel for you but I have to say that it seems like you're doing so, so well to hold everything together. I know what a huge achievement it is.

Before Christmas, I said I'd visit my family. It was a 9 hour drive and a weekend that was non-stop. It drained me and I'm still recovering now. That was with no added stress as in having a family that is a trigger point for anxiety and I did it when was was in fairly good shape thyroid wise; so I truly take my hat off to you to get through Christmas and no wonder you're fatigued.

Have you read up on Spoon Theory? It applies to any chroninc disease but it helped me understand the limits on my energy due to crashing fatigue and it helps me understand why I can't just pull myself together after a stressy/busy time.

butyoudontlooksick.com/arti...

xxx

in reply to VulpusVulpus

Thank you so much. I guess I'd be so silly to rock the boat right now wouldn't I by coming off medication.

I was attacked and my whole family hated me for not forgiving him. My sister was vile and bullied me for 2 years and my mother left me struggling with anxiety and agoraphobia. Then last year I became ill as did my poor son due to bullying and she rejected me when I asked for help. I find it so hard to see any of them and if I do I crash for days after in bed with weakness and fatigue. My mum turned up after Christmas wanting a huge talk about how bad our relationship has become. I broke down and had a severe panic attack. I dint want to talk about it but I let it all out after 4 years. I sobbed for hours telling her. She didn't promise to change and she took some responsibility but didn't seem that bothered by her actions. After that I was in bed for 2 days. I couldn't even walk to thr bathroom without hubby holding me. I felt so sick and weak. It was horrific and now I'm terrified to see her again incase I crash that bad in future. If I didn't have kids I'd not see her at all. I do it for them.

I panicked that crash was not normal but my hubby told me it was severe burnout after a talk like that. Thing is I crash after any visits from family or even a phone call. Or if I over do it going out for too long or too much housework. I had overcome that and crashes were much less but now I'm back to daily bad fatigue and ever since December I've had weak thighs. My weak thighs hit over the December and haven't left me. In December as soon as the tree went up.my anxiety hit hard, I was having severe physical anxiety all day, nausea, off my food and crying almost all the time. Nothing how I am usually am anxiety wise. I'm coming through that now but ever since I've had crippling fatigue and weakness in my legs.

Thank you for your kind words.

Julie xx

in reply to

And yes I've heard about spoons. I shall give the link a read. Thank you.

VulpusVulpus profile image
VulpusVulpus in reply to

You've been on the recieving end of physical abuse and then emotional abuse and bullying. I could cry for you. Your family are meant to be your safety net; yours clearly were not. This abusive behaviour and emotional abuse is on them. How dare they! How dare they do that to you.

I'm not surprised that you burn through what energy you have.

Sorry to be so upfront but they are abusers. If you were a child, it would be a safeguarding issue.

Makes me so effing cross. xxx

in reply to VulpusVulpus

It went on for years, the year before he attacked me he attacked my husband unprovoked infront of our children, I had to call the police to have him removed from our property. He had attacked his own kids, partner, my other sister yet they all stood by him when he attacked me and I lost everyone because for once I said I wouldn't forgive him again, I was always bullied into forgiving him and blackmailed. My mother used to threaten to cut me off if I didn't, so it took a lot for me to finally stand up to him and protect myself and my children. I am so glad I did but since I have been alienated. Last year they decided (mother and sister) wanted me back, they knew I was ill physically and I let my guard down slightly to see if they cared and wanted me back but no they both didn't offer me an inch of support, not once asked how I was. My mother saw me ill on a few occasions when she visit (twice I was bed ridden) and she would leave and for weeks not call to check on me. So all of that emotion brought back to the surface and all the rejection all over again by December just hit me hard. Another year of hurt hit as Christmas approached, and I think it's why I had this latest anxiety setback. I cried daily for weeks, couldn't eat, couldn't function and was an absolute anxious wreck at the thought of Christmas and having to see them. I swear it broke me down.

It's since Christmas I have felt this crippling fatigue again and constant weak legs. I still had chronic fatigue but I was a million times better. I was back doing yoga again, walking my dog, shops 3 times a week and anxiety had got so much better. I was so grateful and happy then out of the blue as Christmas season came upon us I hit a huge setback, I was devastated and now I am left with severe fatigue and weakness. Last year I was so ill until about OCtober, I would crash often and end up in bed ill for days, every day I was drained and weak. Then I had 2 amazing months on 50mg until the anxiety hit again. Now I feel set right back physically.

You're right, don't be sorry. I could honestly write a book about what they have done to me. My childhood was traumatic as my brother self harmed, was aggressive and abusive. I was the eldest of 4 and helped mum bring my 3 siblings up. My dad was never home, always in the pub and my parents used to fight infront of us all the time. At 20 I escaped and moved in with my partner and we got married. My mother divoced my dad then, and at my wedding rehersal she told him to F off on the steps as we were saying good bye to the vicar, she hurled abuse at my dad unprovoked and caused a huge argument as my mother in law was angry my mother would do such a thing and ruin the night before our wedding and possibly our wedding day. On my wedding day I was so upset and wasn't even speaking to my mum. My whole life had been ruined by her outbursts, I was more of an adult/parent. We became close when I had my children, she went on medication and seemed calmer and nice but then when my brother did what he did she blamed me, she turned up at my house saying he was suicidal due to guilt of what he had done to me and if he died I'd have blood on my hands, my sister said the same to me. I had 2 years of similar abuse so I cut them off and didn't even attend my sisters wedding. My other sister is getting married this year and i won't be going. It hurts but I have had to protect myself from more pain and ill health mentally and physically. They destroyed me.

Sorry to have offloaded, you are so lovely and when someone validates the pain I have suffered it's such a comfort after hearing my own mother saying I am wrong for not forgiving him. Thank you so much.

Julie xxx

VulpusVulpus profile image
VulpusVulpus in reply to

Don't be sorry! I don't mind. It's good to "talk" :0)

It takes guts to prise yourself away from abusers but you did it. That makes you strong, brave and a really good parent to have. You may have weak legs but you have a backbone!

Some families are toxic and your mum with her abdication of responsibility towards you when you were bed-bound and previously beaten by your brother kinda shows partial sociopathic tendancies.

My dad was an alcoholic and was verbally abusive with a shot of emotional blackmail thrown in. It almost destroyed me, but you get away and in time can look at it fairly dispassionately and I just think: "You made it all my fault by it was you. You were the problem. I was your child. I was blameless".

Takes time though xxxx

beh1 profile image
beh1

I came off mirtazapine a few years ago. Coming off increases your anxiety, affects sleep and decreases appetite. My advice would be stay on for now and sort thyroid meds. Get to a steady place. And try not to keep telling yourself bad things-be gentle. X

in reply to beh1

Thank you so much.

I agree it wouldn't be thr right time now would it. I would be silly to even consider it.

My husband said the same tonight, he said stop reading about mirt, stop thinking about it, worrying about how you feel because it's no wonder you're so anxious and fatigued. I feel so exhausted mentally, I feel everythings unreal and I am drained physically. I do need to stop thinking and reading and just focus on relaxation and believing my fatigue and weakness is thyroid related.

Julie x

UrsaP profile image
UrsaP in reply to

You poor thing. You have been, and are still, going through so much stress. I have some understanding about your family issues. I too have major family issues, and as someone else says - your family is suppose to be your safety net! I'm lucky I still have two sisters who stands by me. One of these I only met a matter of months ago! I TG that she found us when she did. Both are Godsends. But the amount of stress family 'disbandment' causes is one thing, but when they won't actually leave you alone, and keep trying to be part of your life, just to stress you out, and/or control you, it is worse, you are constantly awaiting the next barrage of abuse! It is obviously not good for health. You can't choose your family. But that does not mean that you have to put up with abuse from them. I have had to cut much of mine out of my life, for my sanity sake. Luckily I have many great friends and lots of cousins whom I say are the sisters and brother I should have had!

I wonder, with everything you are going through, and with the Hypo Thyroid too, if all this stress may have affected your adrenals? I know the family issues I had 12 years ago and again this last 18 months or more, where I have been living on my adrenals, constantly on edge, worried and living in fear, have affected mine again.

If you are having blood test next week, it may be worth you asking for your adrenals to be tested too. They may be running low. If so, it could be affecting your uptake of other meds. (beware of any 'borderline result...it would still indicate a problem) I know, having seen Dr P a couple of times now, that this is what appears to be causing me problems again. If your adrenals are compromised you will not get your thyroid meds right and I'd guess the same will apply to other meds. Best wishes

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