Sorry to post again. I appreciated all the advice before Christmas, it helped me so very much and got me through Christmas and the family advice I took on board. I felt poorly over Christmas but I still managed to enjoy it, all the stress had worn me down and I felt drained. I decided to go back to therapy for my anxiety and after 2 sessions I am feeling fairly hopeful.
My issue is I am struggling at 37 to accept this. I have had a difficult life, I know many other people have and I am no exception or a victim. I grew up the eldest of 4 children, a mother with mental health issues (depression and I think something more but never diagnosed), my dad was always either at work or the pub to escape mum, my brother had severe mental health issues from a young age. I grew up fast and was a second mother in the house. My mother was aggressive towards my dad, we were never hidden from it and she would scream infront of us and slap herself with anger and stress. So yes tough childhood. At 19 I developed health anxiety after my grandad died. It came and went in my 20s, I got married at 21 and had my first child at 22. I was happy, glad to be away from all the stress from my childhood but my family being so aggressive and toxic made life tough often. I had anxiety again after I lost a baby when I was about 26. I had severe health anxiety again. I had therapy and it went away. Then 4 years ago my brother had a psychotic break, he was attacking his kids, his mum, my husband and a year later me. I cut him off and was resented by my mother and siblings and since have had very little contact. My grandmother died during this time also and I knew from a young age I'd never cope when she died as she was more of a mother to me and to this day I've never grieved her death because of the attack happening 3 months later.
After the attack I was diagnosed with anxiety, panic disorder and agoraphobia. I was housebound and terrified to leave. During this time my GP ran some tests as I was so very anxious and one was my thyroid. My TSH was 4.9 and Ft4 I think 10.2. I was told they were fine, but to be honest I didn't feel tired or unwell just highly anxious and stressed from the hell I had been through. So the last 3 years I have battled anxiety and about 18 months ago I felt almost over it. I was back out living, doing appointments again and taking my kids on holiday. I overcame my agoraphobia and was happy. I had completely walked away from my siblings and my mother I saw once a month maybe so she could see the children. Then in August 2015 I went to my GP complaining of severe fatigue, I'd feel exhausted all day and had for months. They ran tests and my TSH was 5.35 (0.35-5.5) and my FT4 was 10 something (7-17 range). Again he told me I was fine. That's when I found this forum and had great advice. My GP said he would test again in 6 months as my mother had hypothyroidism.
Well 6 months later my son was being bullied so severely he told me he wanted to die. It was horrific and I was struggling seeing him daily vomiting before school, begging me not to leave him there, he was having severe panic attacks all day school kept saying I had to pick him up as they couldn't support him... it was awful. During this time my mother rejected me again when I was brave enough to ask her for support, silly really as she didn't help me after my brother attacked me. She rejected me and my son and it hurt all over again. My health deteriorated during this time, my energy crashes were so bad I'd be bed ridden, i couldn't walk my legs were so weak and I was terrified to even walk around my house I felt I was walking on a boat or marshmallows. It was terrifying. My GP came to see me, ran bloods and diagnosed stress of seeing my son so ill and coping alone. Bloods all ok.
January 2016 I went private with Blue Horizon and did a home test for thyroid. My TSH was 6.8 (02.7-4.2) FT4 14 ish (12-22). GP diagnosed subclinical hypothyroidism. He agreed to keep a close eye on me. The energy crashes continued, I was so fatigued daily and weak. I could just about get my children to school, tidy round then I'd be on my bed all day. I felt dreadful and during this my anxiety rocketed again. I was terrified of how weak and drained I felt, scared I'd faint and I started going out less and less to the point i ended up housebound other than driving my kids to school.
In March my TSH had gone to 7.5 Ft4 again around 14. GP said he still couldn't treat me and said I had chronic fatigue due to stress. He agreed if the next test it had jumped again he would treat. May test my TSH was 9.28 and Ft4 just under 15. My GP tried to get me to wait another 3 weeks and i said no, I was not willing to put myself through anymore of this just to reach the magic 10 the NHS need. I was crawling around my house, crying, and I had no support. My hubby had a new job, longer hours and I had no family to help me. He agreed and prescribed 25mg thyroxine. I am only small and very sensitive to medication. 8 weeks later the TSH had come down to just under 7 and Ft4 about 16. He wanted to increase to 50mg but I said no, stupid me, i have fear of medication and was too afraid. I started to feel a bit better so wanted to see how i got on. 8 weeks later my TSH had jumped back up to 8 so I agreed to increase to 50mg of levo in September. November my test showed my TSH was 2.6 and Ft4 almost 19, FT3 5.3. GP was happy and said lets give it 3 months, so I am being tested again in a few weeks.
So although my levels are now much better i still daily struggle with fatigue. Is this normal? it's causing me so much anxiety. I spend every day upset, I wake up and feel drained, heavy, weak legs, breathless and exhausted. I get the kids to school and have to rest. I was walking my dog every morning again, doing shops at night with hubby so working on the agoraphobia the ill health had returned but since 4 weeks ago when my anxiety spiked bad again I have felt worse physically again. My hubby says it's been all the stress of Christmas and putting myself under pressure to see family, it made me feel so ill.
My anxiety has been all year since I became ill, I daily add fear to how fatigued and weak I feel. If I feel a crash coming I am terrified and get stressed about anything that could crash me. So if we have to see my mum I get anxious knowing seeing her will land me in bed for a couple of days after. My friend says my crashes are more stress caused as they hit if I get very anxious seeing my family. I agree but daily I have felt so fatigued and weak, my friend doesn't think now my fatigue can be thyroid caused as my levels are the best they've ever been. This worries me more because if that's the case I add fear there must be something much worse wrong than my thyroid. It's why I have anxiety I think, because I worry why I still feel unwell and have I got addisons disease. My GP ran bloods recently, a huge list. Nuclear antibodies, FBC, blood film, b12, ferittin, folate, hba1c, glucose, u&es, kidney and liver function etc... All were fine other than my sodium which was marked low at 129. Potassium was 3.4 so .1 under the minimum 3.5 so GP said it was fine and not to worry, he didn't want to re test it. Glucose was 8.9 but hba1c fine so he wasn't worried. I was doing a thyroid test with Medicheck, the home test so I asked could I add sodium to that and would be accept it, it came back at 138 and he said fine no need to repeat it. Since then though I have worried I have addisons with how daily I feel weak, fatigued, breathless, low bp feeling on standing, my BP has been low all year but GP says it's fine. 100/60 ish. I posted yesterday a photo of my face as I worry that's an addisons rash but hubby says more rosecea or maybe thyroxine has caused the colour in my face. So daily I think I add fear because I have now this addisons worry. I spoke to my friend and she said my potassium is low and glucose high so it's not addisons and why GP hasn't tested for it.
My fatigue had got a little better, I still felt I had to pace myself but I was out able to do a 10 minute walk a day and housework again. Now since the high anxiety in December which has calmed a lot I am back feeling drained, weak thighs all day, fatigued even after a good sleep and heavy all over. It's set me back working on my agoraphobia again because I feel too weak to walk my dog now and go to shops. All day I feel exhausted, and I get upset and cry, I add anxiety to it all day. Other people can just say I have hypothyroidism and carry on but I can't , I feel so weak some days and fatigued that I get anxious just walking around my house. I can't seem to stop the anxiety or health worries and I know this will make me worse. I cried to my husband last week and I said I am struggling to accept this aren't I, at 37 I am struggling to accept I have this health condition and I am upset that just when I overcame everything my family did to me and the attack, this then hit me and I am setback worse than ever with anxiety. I never had agoraphobia or such severe health worries until what my brother did then this illness. I worry I am letting my children and husband down. We don't do days out often, I can't do cinema or restaurants again since I have been ill, everything I got back in my life after the attack left me housebound, I have lost again. I can't even go to my GP he comes to my house if I need him. It doesn't help the therapist I started seeing in the summer to help me through this said she couldn't understand why I let myself become agoraphobic and anxious again and I must feel less of a wife and mother, yes she said that and since I believe it.
I feel I won't ever accept this and will i spend my whole life feeling like this. I have a wonderful husband and children and I want to live a normal life but I feel since being unwell physically my anxiety is worse than ever because I am terrified going out feeling so weak and fatigued, and if i overdo things I crash and end up so weak I can't get out of bed.
My mother visit last week and I had a panic attack when I saw her, she turned up unannounced and wanted a heart to heart. I have never told her how much she has hurt me and rejected me but I let it out, I panicked loads and cried my eyes out. I wish I hadn't but it's out now, she won't change and she wasn't that loving to be honest. She said sorry and that was about it. I crashed for 2 days so bad I was bed ridden over new year and hubby had to even help me walk to the bathroom. It passed after 2 days but since I have felt very tired. Normal? my therapist yesterday said my crashes sound very much stress caused and maybe the daily chronic fatigue is the thyroid.
How can I accept this? how can I daily accept how weak and awful I feel and not fear it? This morning knowing I had to take care of my kids and get them to school was awful I felt so anxious feeling so drained and fatigued. Eyes wise I don't feel too bad but body wise I feel heavy and weak. I feel grim. Adding fear of addisons, fears of how I feel every day jsut makes me feel a million times worse and I have no idea how at 37 to accept this and not fear it. I panic being ill I will collapse, end up in hospital and having agoraphobia they are my fears because right now I'd not cope going into hospital or even to the GP.....hence why my mind fears being ill. My mind runs away with me thinking did I have hypothyroidism, was I right to bully my GP into thyroxine,what if all along it's been something else. What if it is addisons but my friend said if it was then I'd be very ill on levo as you shouldn't take it if you have an adrenal issue.
Sorry for this long ramble, I've been crying and upset since I took my children to school. I so wanted this year to be my year but I don't know how to do this or accept it. I have missed out on most of my thirties and I don't want that anymore. I don't want to get so stressed about my family if I have to see my mother to the point i crash, I don't want to feel I can't go out and enjoy my life but being ill has limited my life so much and now I can;t tell what's my health and what's stress making me so worn down.
Any advice appreciated and if you got this far, well done
Unfortunately levo isn't a magic bullet it takes a year if you are lucky to get on the right dose simply because after every dose increase you have to wait a minimum of 6 weeks before you can get tested to see if your thyroid hormone levels are at the right level.
The only other thing you can request that your GP does is do vitamin and mineral tests if they haven't done them before. These are for vitamin D, vitamin B12, ferritin and folate. This is because the symptoms of nutrient deficiencies often mimic those of hypothyroidism. They also are more common in those with thyroid conditions than the normal population, and you need these at optimal levels to make the levo work properly.
If your GP refuses to do them or makes up some reason to delay you need to take private tests. Either way once you have the test results and ranges post here.
Edited to say: If your mother or any sibling drains you - make up excuses to avoid seeing them in person. Keep any phone calls and messages short and as in personal as possible. If you need to take care of yourself and your children first. Only once you are better can you make a proper decision of how you are going to deal with them.
I have had them tested only 8 weeks ago and a few times last year. Ferritin has always been low, most of my life. Recently it was at 34 and I supplement iron with Feroglobin as tablets from GP make me feel unwell. I have good B12, folate,.... I had D tested with Blue Horizon in the summer, it was about 70. I was supplementing but then found out I should have been supplementing it with vitamin K or it could be dangerous so I stopped. I have good iron levels, my HB was 14.8.
My b12 was about 1070 in the summer with Medicheck test, but on NHS test 2 months ago it was about 500. So I was thrown by that. I had stopped supplementing though once it hit 1070. It was 212 in August 2015 and I started taking B12 supplements.
I agree re my family, totally agree. I need to work on myself without that added stress this year.
The problem with Feroglobin is that it doesn't have sufficient iron in it to raise your ferritin. If you have any form of iron deficiency you need far more iron than the RDA and supplements you can buy off the shelf in a health food shop e.g. Holland and Barrett or pharmacy can provide. The supplements you can buy over the counter deliberately don't contain high doses of iron as they don't want to kill people who are healthy. As you cannot take ferrous fumerate or ferrous sulphate, you should be able to take ferrous bisglycinate. A common make which is well-regarded on this forum is Solgar Gentle iron. Personally without a ferritin level of around 60 I feel absolutely knackered.
In regards to the vitamin B12 - once you are start supplementing all the blood/serum test reads is the amount of vitamin B12 in you are supplementing with. This is why it is advised that vitamin B12 "normal" blood/serum tests are useless once people have started supplementing. You want a more expensive active vitamin B12 test. A high B12 isn't actually worrying if you are supplementing and is thought to decrease the risk of dementia.
You should also be taking a B complex to ensure you get sufficient folate with the B12 to keep your B vitamins in balance.
With the vitamin D3 you should actually be supplementing now as it is winter. If you know you don't have issues with calcium levels you can take it without the K2. Instead you can eat fermented foods to get the K2. The issue you have with vitamin D2 is if your levels are not too far from 100 if you don't take it, when your level falls lower you will need higher dose supplements with the cofactors to ensure you don't have the side effects from trying to raise your levels quickly.
The simplest rule is to leave 4 hours between levo and other supplements. This is really important for iron as it interacts with nearly everything but is just a good rule of thumb to remember for the rest.
Iron can be taken with other vitamins but it interacts with minerals so the general advice is to take iron on it's own with just vitamin C and water a couple of hours away from other food and drink.
There is advice that you can take iron supplements with food if you have difficulty with them but personally I found it just gives me bowel issues, and the nature of them is unpredictable.
Hi there, sorry you feel so bad and really not sure I should advise but you mention it all started (anxiety/panic attacks/agoraphobia) after your brother attacked you, if so, has post traumatic stress disorder (ptsd) been considered. This is treated a little different to general anxiety. You may find somewhere locally that is NHS funded that you can self refer to and they will do an assessment to see if they think is the case.
I hope you don't mind me being a little blunt but in regards to some of your questions, I saw a previous post re your antibodies and can see these were not an issue so I suppose theoretically, your stress levels could be affecting your thyroid results to that level so it's hard to say for sure whether or not your doctor was right to be conservative. Especially if these results only started after the attack etc. I suppose your job (which is probably the hardest) is to try and work out which of your symptoms are caused by stress and what physical health problems need to be dealt with separately. The best you can do is try and rule out or resolve as many issues as possible and see what you're left with. try and work on the anxiety issues and try everything you can to get on top of them while ruling as many other things out as possible.
Have you worked on all the other more simpler basic lifestyle issues you can - do you drink enough water, do you have a good diet, do you eat enough , do you have too much caffeine etc etc. My mum is tired all the time but then she eats less than 500 calories a day and this is often high in sugar so it's not really surprising lol! I do know what its like to feel like you're going round in circles with doctors shrugging their shoulders while you struggle to get out of bed every day so my sympathies are with you. I was suffering from major fatigue all my life, hypo since childhood and my adrenals were failing and did cause me to crash in the same way you mention when stressed etc but then it would be silly stress that caused this too but major stress can also cause you to crash so again, it's difficult to say. Going gluten free resolved much of this in my case. If you are concerned about thyroid and adrenals, then this may be a good place to start or at least rule out and will help any developing autoimmune issues or inflammation anyway. I am still more normally tired most days but then I don't get enough sleep lol! If nothing changes, try a complete elimination diet to rule out any other food intolerances. You can keep a food diary on something like chonometer which tracks all nutrients to see if eating well enough. Then maybe work on exercise, literally try everything you can to improve your health in general -any percentage of extra health is an improvement. Get your labs on ferritin/vit d/b12 etcas suggested above and see if anything can be improved there.
I would also agree and say at this point, it might be best for you not to see your mum at the moment if it makes you feel worse and this will affect your children more if you crash badly for a few days after. Can your husband take the kids round to see her until you feel better prepared to deal with it or is there some other way?
Is there something you can do to try and make yourself feel calmer? Do you have a hobby or maybe find one - something you can do to relax and focus on other things. I love board games so spend a lot of time on boardgamegeek lol - you can even have fun playing them with your kids. Can you go for little walks in the evening with your husband? Try and find something that is a little more interactive than general tv ect and relaxes you whether it be knitting, drawing or pole dancing!
Have you taken meds for the anxiety? I always feels people should try and deal with their issues but sometimes you get so bad or fall so low, they can be helpful in helping you restart and get control back until you deal with it properly. But this is something you have decide, unfortunately, it's very difficult for others to help you with issues like these. I've even considered hypnotherapy before I figured out the answers to my health issues lol!
Basically, it's up to you to try and take control of all these issues and work on them and try everything possible to improve your situation and see what you are then left with. Sorry if you tried to do all the above already but I do hope you feel better soon
Yes I was told this summer I had PTSD. I went to a therapist that specialised in PTSD and it was going well, but she made me keep talking about that day with my brother, how awful my childhood was etc.... it made me worse and worse. One day she said to me that I must feel less of a wife and mother for being agoraphobic and it destroyed me inside. So I stopped seeing her, I was devastated. I am now back with the therapist I saw for a year after the attack 4 years ago, she doesn't treat on a basis of re living the past, she thnks you have to leave the past there and focus on now and how to move forward with the anxiety it's caused which I totally agree with. In what way is PTSD treated? because the way I was being treated with the therapist in the summer was awful re living it all, I ended up so low and anxious dragging up how awful my life had been. She made me talk about it then taught me about anxiety, and how I was a survivor etc.. Now I feel confused as to what therapy I should have if I have PTSD lol!
I agree re my mum and I am trying to find a way around it because this year I need to make it about me overcoming this. I put a brave face on and never cry infront of my kids or show them my anxiety but they are aware I have been poorly with my thyroid.
I eat pretty well, I cut gluten out a year ago which has helped my IBS. I drink well and never have caffiene, alcohol or anything like that.
I am on medication for my anxiety, for the last 3 years and it's helped me eat and sleep again.
With my fatigue bad again I struggle to go out walking but enjoy a drive in the evening with hubby and the kids a few nights a week. I do yoga most days and learn about crystals. I enjoy audio books and reading. I try each day to relax but yes inside I am always feeling a level of stress and anxiety about how ill I feel, instead of just accepting it.
I often wory should I have even taken levo as the TSH did shoot up when my son was ill but once my son was better it never came back down and I was unwell. Now I am left worrying though was I right to take it and will it cause more damage being on it. My GP says I was hypo and I did right to seek treatment and that stress probably just accelerated it.
In my experience, neither of those two ways are the best for dealing with it. Ignoring it and pushing it to the side definately doesnt work either as will always pop back up again. They normally put you in a group session over a couple of months to teach you techniques on how to lesson the panic and other symptoms etc first before they even begin to talk about the initial situation that caused it in the first place so maybe you need to seek better qualified people?
I suppose you've just got to get your logical part of your brain stronger and realise that it probably makes little difference if stress causing it or not to a large degree, if you need extra thyroid, then you need it maybe. When I reversed most my health issues, I have halfed my dose on thyroid meds since (was on full dose for over fifteen years) and my body soon lets me know when I need to reduce so maybe concentrate on all the other aspects instead
Also, I should note that once you feel you have improved with this side of things, you still don't have to talk about it, there are other treatment options they offer if you are still not ready and they will redo any of these multiple times if you are still not ready but it always is with the aim of dealing with it in the end although all the previous treatments can help anyway without getting there. Maybe read up more about it or see what's in your area.
The nhs were useless and put me on an 18 months waiting list for cbt so I went private with a very qualified psychologist. She was great and helped the anxiety side of things anxiety lot but since being ill I'm struggling again. I've done 2 sessions with her so far, she understands my limitations but is working again on just the anxiety anxiety accepting my ill health but still going about my day as usual but within limits. She understands ill have fatigue. I just don't know if it'll help right now as I'm so worried about my health. It is didn't have the health issues therapy helps but I feel with health issues can anxiety therapy really help me. Confusing lol.
Did she spend time doing anything like grounding/stabilising techniques or EMDR? I suppose the complicated part is that some of the symptoms can cause avoidance and distraction whereby to try and push from your mind, you can become obsessive about other issues to try and not think about the real ones. Maybe the reaction you have to your mum and other anxiety issues you have may indicate the problem is still there to resolve possibly??? Or maybe your health is the issue and making you feel crappy, it's complicated but you are best to work this one out.
THere is a NHS funded place in my town where you can self-refer and they will assess you to see if applies but the service is quite quick - maybe they have somewhere like that near you?
The therapist in the summer who said I had PTSD and hadn't had it diagnosed after i was attacked, she did some EFT techniques? nothing more other than talking about the traumas, then teaching me why I was anxious and the trauma brain. She sent me a lot of info on the trauma brain and how trauma effects us. She also sent me a cd on breathing techniques and coping techniques as I am a very negative person (I don't mean to be). She didn't suggeest EMDR.
The new therapist, well she focuses on the now and anxiety and goals to overcome it. Mindfulness and acceptance of the anxiety.
I do feel the ill health has been another trauma as my anxiety has worsened this year. It had got better and I was back out living my life and overcame everything agoraphobia wise that the attack caused but soon as I got ill it all came flooding back and now I am literally afraid of everything, even finger prick blood tests incase I faint?? things I have never been afraid of lol!! Its silly.
What kind of grounding techniques did you have in mind? Maybe she did and I didn't recognise it.
She did do the first few sessions just discussing the trauma brain and how anxiety works but then she went on to ask about the trauma a few sessions in. She made me stop often while i told her about the traumas and I found that soothing. She would make me stop and breathe through the anxiety talking about the trauma brought up.
I stopped seeing her after 3 months after what she said about me feeling less of a wife and mother being agoraphobic again. I didn't feel she helped in regards to the agoraphobia but maybe that's something I need to stop worrying about while I get the actual anxiety down and stress levels and then the rest will slot into place.
You have had a lot of stress in your life, simple. The modern way to look at stress and emotional issues is to use brain signalling meds (anti depressants) and talk about issues. Yes the talking can help, but my thinking is that the brain signalling approach is wrong.
When we have stress / bad treatment growing up we adapt internally to this. This means our hormone system adapts and changes. So my focus is on this area. I feel hormones and vitamins are pushed aside by mainstream health care because no money can be made out of them. If on the other hand you develop a brain signalling drug you can make a lot of money.
So looking into how your thyroid and adrenal system is working is going to be key here. Very often taking thyroid meds doesn't fully solve things. You need to establish a better balance with your adrenal and thyroid system. IT is a case of slow nurturing. You may find you need x amount of thyroid meds at this point, but a different amount in the future as you nurture the adrenals and supply crucial vitamins.
It is impossible to give you your own plan to follow, so the best way is to read forums like this and try out different approaches. Generally there are some key vitamins you want to be taking. Vitamin D is a big one and is why we often feel rubbish at this time of year. Yes it is stressful because of christmas, but we are also at the mid point between saying goodbye to the sunshine and hello again in spring. So get on 5000 IU Vit D now and see how this works out. a years supply on amazon cost £15 delivered.
The B vitamins are useful, check if iron is low and see if taking the T4 at bedtime makes a difference - it does with me big time.
There is a lot to look into, but the best doctor is going to be you and i always ask how long have you got on this planet? Average stats will say another 41-45 years if you are 37. So you really have a long time to feel like crap, or plenty of time to get on top of your metabolic issues. So don't rush things, go slow with your changes, try do one thing at a time and see how it goes. Eg, try Vit D and then leave everything else unchanged for 4 weeks. If you lob in a T4 increase it is difficult to tell if any positive stuff is because of the Vit D or the T4 increase.
I am sure you will get lots more advise. The key thing to remember is you get get much better. I was ill from 21-36 before i stumbled on the thyroid issue. It has been trial and error for me, but the NHS now treats me for HypoT. I would say i am totally better, but i am always looking to make new changes and try tweaks.
Thank you so much for your helpful and kind reply to my ramble
I have good iron levels, well my HB is 14.8 but my ferritin has always been low, the lowest was 4 years ago when it was 8. I can't take iron from the GP as it flares up my IBS so I supplement with Feroglobin liquid which has raised it to 49, but NHS test showed 8 weeks ago it was only 34, but on the private test 8 weeks prior to that I was pleased with 49. It's the only supplement that doesn't make my bowels flare up, it has a few added vitamins but low level.
I supplement vitamin C at around 500mg a day and it has added magnesium, it's a powdered vitamin from Biocare. I only take half the dose as again it can flare up my IBS. I think the full dose is over 1000mg a day. I also have started supplementing B12 again, Jarrow 1000mg. My B12 was 212 August 2015, it went up to 1070 last summer and I was pleased so cut down to a tablet maybe once a week. Last bloods in November on NHS showed it was 477, I was pretty disappointed so I have started a tablet a day again this last 2 weeks.
I was supplementing with a vitamin D spray, I hadn't had it tested but suspected the last few years after spending a lot of time at home I'd need a supplement. I had my vitamin D tested with Blue Horizon in July last year and it was I think about 68-70, my mind can't remember exactly. I was told I shouldn't take it on it's own as it can be dangerous, should I take it with another supplement for it to be safely absorbed? I'd like to start that again now.
Thank you for your kind advice, I shall do some more research. I guess it is early days for me with hypoT, I just struggle to accept this and add anxiety every day. I am scared doing anything, even just picking my kids up from school due to how drained and tired I feel. I wish I was stronger mentally and not always so afraid.
A lot of your symptoms sound strongly adrenal related- low BP, anxiety, crashing. Have you done an adrenal saliva test by Genova, I would highly recommend it.
If levels are low, something like Arenavive adrenal cortex may help you immensely.
I haven't done a cotrisol test for fear what it would show. I am afraid it will be low and then I'd have to be tested for addisons disease. My GP said they don't test the adrenals unless they suspect addisons. So I'd rather not self test as it would spike my anxiety further I think.
I would suggest to do the saliva test when you feel a bit better and stronger. The adrenals can be struggling but not full blown addison's as NHS will only recognise this. The crashing after exhertion is typical of flagging adrenals. If you are taking antidepressants these can lower cortisol too and make the situation worse. But understand it's hard to come off them if they are helping you.
Yes my medication does lower cortisol and causes fatigue so I am worried about that and want to wean off. I also know that right now in this anxiety blip I couldn't handle withdrawal which I've heard is nasty on this drug so I feel kind of stuck on them. It's horrible. They've helped to a degree and maybe still drugs but I fear if it's causing some health issues I should wean off. I'm just too scared to make myself feel even worse right now.
Maybe a slow taper off would help. I know when I took mirtazapine for 3 months I got terrible insomnia and anxiety which lifted when I stopped it. The saliva test is the adrenal stress test: thyroiduk.org.uk/tuk/testin...
You get a discount if you email/ring with the code in the list.
I'm on 15mg the last 3 years so I'm not sure how slow i could taper with 15mg being then smallest dose tablet. It's actually cured my insomnia and lack of appetite. I tHoughton it increased my anxiety at first but that got better as I settled on it but I still worry if it's caused all these phobias and fears or is it just due to the ill health this year. I feel ill right now and the thought of withdrawing on top worries me. My.gp doesn't think I should withdraw right now but I also worry being on it is causing problems but looking back I am now sleeping and eating well. It's so difficult. It's obviously not helping my anxiety anymore and I worry it's even made it all worse.
I've rung them and ordered a cortisol saliva test. I had to quote thyroid UK and is it through thyroid I get the results? I'm confused.
Go with what's best for you, if it is helping you right now then that's ok. Maybe in the future you could try a slow wean with your doctors supervision. Glad you have ordered the saliva test. There is information about what to do and a form to fill in to get your results after you have done the test:
I am also a member of Thyroid patient advocacy, another great thyroid forum. I have seen Dr Peatfield through that site and he advised an adrenal gladular to help support my weak adrenals.
Also liberally salting food helps as I have low blood pressure and find it helps the fatigue.
If it helps you feel less nervous, they were about to diagnose me with addisons. The two things I would say that differentiated from everything else in my case was that I had brown patches all over my face and other areas and I would lose my temper at the tiniest littlest stupidest thing when before I never got angry in my life - then I would crash in bed asleep for hours or wherever else I was sat. On the positive side, I've still managed to reverse it and avoided medication and so far fingers crossed, it has not yet shown any indication of returning so even if your adrenal glands are failing, there are still things you can do to prevent. May not work for everybody but certainly isn't case closed for some. Worse case scenario, if they have completely failed, is that you will have to medicate but this is better than not medicating if so as you will never deal with stress if untreated addisons and can be dangerous. Best case scanario, is you find they're still okay, but they may need support or balance worked on because of all the stress but then at least you wouldn't be worried about it any longer
First things first - you are hypothyroid which means you don't have sufficient thyroid hormones circulating in your blood. The dose of 50mcg is a starting dose and too low a dose can backfire on us. I know you are ultra-sensitive due to what life has thrown at you since a young girl - a terrible burden at such a young age.
Also, levothyroxine isn't a 'medication' it is an essential thyroid hormone replacement, without which we would eventually die and we have to contend with all all of the awful symptoms.
I am not medically qualified at all. I had undiagnosed hypothyroidism but had a good childhood and so you are left with the aftermath of a desperate childhood with nowhere to turn except your good grandmother. I suspect you still think of her often and if you dwell on your grandmather and 'what would she do - what would she say' it might help you to go forward and give you some mental strength.
We have, no matter how hard, to let go of the past and look forward, first to recovering your health and relief of most (if not all) of your clinical symptoms. It seems to me that everything is interconnected somehow to a thyroid hormone deficiency. Doctors are apt to treat a 'symptom' as apart from other symptoms but if we put all of the symptoms together it makes a whole i.e. hypothyroidism.
Thyroid hormones allow everything in our body to work efficiently, so if low, body is inefficient. T3 (liothyronine is the active hormone required in our billions of receptor cells and is the most important. T4 (levothyroxine) is the inactive hormone and it's job is to convert to T3.
You are a good mother to your children and its always good to cry as it heals some of our emotions. You have to look forward to recovering your health. Having the burden of illhealth is awful when you've have a family to care for and you try to lighten their lives allowing them not to worry about their Mum.
Your next blood test should be the very earliest possible, and fasting but you can drink water. Leave approx 24 hours between your last dose of levo and the test and tell your doctor you've been advised to get your TSH to around 1 or lower and a Free T3 and Free T4 towards the top part of the range. If doctor hasn't tested Vitamin B12, Vit D, iron, ferritin and folate ask for these.
I do my best and yes as a mother I don't want to burden my kids, they've been amazing since i was attacked. They all knew I was agoraphobic and spurred me on to overcome it all. I did and life was good again, now this has happened and I am more afraid than ever to go out and about due to how weak and drained I always fear. I have to stay strong and force myself daily as I don't want to burden anyone, it's so hard because now I rely on my husband to do all appointments for the children, including parents evenings, doctors, dentist... I feel a total let down and down on myself.
My GP ran tests on B12, folate etc... 2 months ago, I posted above the figures to another poster. I also had them tested private twice last year.
I am being tested again in about 3 weeks for the thyroid and I suspect I will need another increase which I will do.
I just worry I will feel this bad forever and I worry is it normal with hypothyroidism at my numbers to still feel so weak and fatigued. My therapist yesterday said alot can be mind, body connection but I really do feel weak and fatigued daily. Yesterday I felt a tad better, so I did do a lot at home and therapy which is draining for me and by 6pm I was so weak the fatigue hit andI had to have a shower then rest all night. So I have days I feel a bit better then I maybe do too much and wham the day after I feel weak and fatigued. It's horrible and I am finding it hard to live with having children and a home to take care of. My children are 14, 12 and 11 and amazing people but I wish I wasn't like this as I feel i am missing out on this years of them being young. I cry often that they will soon be older and fly the nest and i will regret the last 4 years I've struggled, plus even more years if I carry on this anxious and poorly physically.
I think of my Nan every day and often cry to her when I am alone. I know she would be saying 'come on Julie just accept it's your thyroid and live life, don't waste it'. She was an amazing person and i miss her love and guidance.
The anxiety is part of the issue os adrenal/thyroid imbalance. You need to get them working in harmony again (if they ever were). More thyroid can cause anxiety if the adrenals are not up to supplying the corresponding energy match.
The link above were some another poster on here posted this week. They are really good links and explain a lot about vitamins etc.
What amount of Vit D did you take per day ? I think in the winter you can safely use 5000IU per day. Then in the summer drop this to maybe 3 x per week. Your Vit D wants to be around 100, some say even higher. I think There is some issue with Vit D and calcium robbing, so have a look into it. I think Vit D is safe and maybe if you were taking 20000 IU a day long term you might have some issues.
I was using a 1000 spray of vitamin D. My vitamin D test last July was about 70 I think, no more than that. I stopped as I read something about it being dangerous taken on its own and should be taken with vitamin K?
Your level is not so low that your bones are demineralising and you haven't stated you have kidney problems.
A severely deficient level is one under 25nmol/L and this is where the risk of bones demineralising is likely to happen. Under 10nmol/L it is probably happening.
Your level of 68-70nmol/L is insufficient in my area and taking 2,000IU - 5,000IU of vitamin D3 on it's own won't harm you.
As a precaution on here posters state add one vitamin/mineral to your regime every few weeks. The people who tend to have issues tend to have it with iron or a B complex, or because they are taking doses of a supplement which no-one has advised them to do.
Anxiety is really quite a reasonable response to a life that has hardly taught you to trust anyone or anything! But it is also a biological process and your adrenals are almost certainly suffering. The Genova 24 hour saliva cortisol test would be a good place to start. Not recognised by the NHS, or conventional medics, of course. But valid nevertheless.
You asked if it was normal, and it is. Go back to your GP and accept the increase to 50mcg, because without optimal thyroid levels you will always be fatigued.
I am not normally one to advocate psychoactive drugs. But I think you are in crisis, and you probably do need a crutch while you work out how to heal. Sertraline is an antidepressant with good anti-anxiety effects as well and I think you deserve the break from the emotional maelstrom while you help your son and sort out your health. I was just like you, totally against any drugs, but it really helped me get my life on track. Your son deserves for you to be coping better so you can support him. Just 3 - 6 months to help you rediscover who you are. Talk to your husband (who is undoubtedly suffering from your pain too) and your GP. There are probably more modern antidepressants nowadays.
Please talk to the school about your son. It is their job to protect him from bullying. If things don't change then ask to speak to the EWO.
Finally, I know I sound like a cracked record at the moment, but lots of people are reporting huge improvement in anxiety on the ketogenic diet. I myself haven't had a night panic (something easier to count than 'I feel anxious' and used to happen once a week minimum) since I started. But although a generally anxious type I haven't been in the state you are for many years. I can recognise that feeling though! Given that I found the ketogenic diet because someone in an adrenal fatigue group was saying it had been the cure for her problems, there are two pointers towards it for you. Consider reading up and trying it for a month - something to focus on while other things work out, and you lose nothing by trying.
If the adrenal test shows issues though what can I do if a GP doesn't recognise adrenal fatigue as an illness itself?
I am on 50mg of levo, i have been since September, that's why my TSH has come down to 2.6 from 8 recently.
I am on an anti depressant, since my brother attacked me I have been on Mirtazapine 15mg as I wasn't sleeping or eating, it has helped a lot. It's just recently my anxiety has really ramped up and I have felt low, I seem to every winter but it feels worse this time after a terrible year of ill health. I am allergic to other anti depressants and one ended me in an ambulance with a very fast heart rate so mirtazapine was my only choice I was told. It has helped, I'd never change it or increase it as i hate medication after bad experiences. My son is now very well, I gave him therapy and he said it helped him overcome his bullying and panic attacks, he also saw CAMHS and he is now happy and well, which is just amazing. He has been well over 6 months now, all issues resolved. School were supportive.
I do feel I let my husband down, I feel I let him down being physically ill. We had a discussion recently as I find it hard to tell him how I feel and he said I was not a burden, he loves me and he just wants to see me well and happy again. He is amazing and I am lucky to have him. Ther therapist I saw in the summer that said I must feel less of a wife and mother damaged my anxiety further and I think it's why I feel even worse about myself right now.
I do need to tweek my diet as recently due to anxiety I went off meat and flavours and was living off fruit, toast and oats. I lost weight too. Not good. I am eating better now though thankfully but cannot seem to stomach any meat, I have always swayed more to a vegetarian diet but that can tire me more.
On top of all the other responses. You mention supplements flaring your IBS. Have you tried taking a good probiotic? A lot of supplements, including iron and B12 rely on action of the good bacteria in your gut, as part of overall health of the gut, for good absorption. If you are having symptoms there on top of deficiencies, I would think that would be a good place to focus some attention. Personally I used VSL#3 initially 1/day, now on maintenance at 1 every 1 to 2 weeks. They are fairly expensive and need to be refrigerated, however, as is Symprove (also widely recommended). I have heard that BioKult (available from Holland & Barrett) is almost as good and considerably cheaper. Rebuilding your gut bacteria should reduce IBS symptoms, hence enable you to take proper doses of supplements which should then be absorbed better and will improve your health.
BTW: instead of focusing on what has been bad in your life, why not try re-framing and looking at all that is good. You have a very supportive husband, who obviously loves you very much and children who you adore and are dedicated to doing your best for, no matter how much stress it causes you. There are many, many people who wish they could have what you do - even without difficult backgrounds and would consider you very lucky indeed. Try focusing on that and working positively to take control of your health.
I am very lucky. I've a wonderful husband and children. I'm blessed more than I ever imagined I'd be. We're such a happy close family the 5 of us. I jist don't want to let them down. I wanted their childhood to be the best. Mine was awful and I wanted my babies to live and I life of happy memories. I don't want them to remeber their mum sick or their mum and dad attacked by their uncle. That's why I cut my family out as they're toxic and dangerous. I did it to protect my children more than anything. It's caused and individual other of stress as of course they've been sad about not seeing cousins, or their grandmother as often but it was out of my control. My sisters and mother cut me off then when they wanted back I've struggled to trust them and the relationships are very damaged. I allow my mum to visit the kids but it's hard for me seeing her. It's been tough but we're stronger as a unit the 5 of us. They're my world and why I've never ever given up.
There is lots that can be done to help adrenals without medical drugs. Diet (called carb cycling), 'adaptogenic' herbs, light therapy, meditation.
You cannot be accused of letting your husband down when it is all out of your control. That therapist should be shot! No one would suggest you were any less if you had a car accident and were severely injured!
There are better ones out there, and maybe when you are well a good psychotherapist might help you come to terms with the rather shitty deal life has handed you. But in my experience therapy is no good in a crisis. You need some mental strength to handle the pain that good therapy reminds you of!
I am worried therapy right now for anxiety won't work and be with complete waste of money if im this tired and worried about my health but I've gone back to it as feel I need a one help with the anxiety.
I'm hoping it'll help me get a better control over how I react to this ill health.
Sorry you've been feeling so low. Long term psychtherapy may help to talk through your history, you could ask your GP for a referral. In the meantime, I would urge you to do everything you can to be kind to yourself. Take long lavender baths, listen to relaxing music, try mindfulness colouring books, take long walks in nature, try aromatherapy diffusers, meditation and deep breathing. Try exercise such as yoga which will improve your core strength. Eat good quality real food and enjoy preparing it slowly and mindfully. Avoid gluten Try to spend less time online and more time with people whose company you enjoy and who make you laugh. Your story reminds me of a close friend's. She has made great progress using the above techniques and is now in a good place.
I have enjoyed yoga and mindfulness the last few years and it helped me gain a good focus again then since i got ill and fatigued it's all I think of and I dwell on how awful I feel all the time. I know I need to break this and get back into the real world and interests. I just find it so hard feeling so tired and foggy headed plus the weak legs.
I spend so much time worrying and inside my head that today when i went out to pick up my daughter and the world felt so unreal and my brain felt so foggy and bogged down with all the worrying and over thinking I do.
I cut gluten out a year ago and it helped my ibs for sure. Would you recommend cutting dairy out? I have cut it out before and felt well for it, recently I have been eating it again.
Thank you for your kind reply, I shall definitely start focussing on interests again and the things you have mentioned are all things i enjoy. I really need to stop worrying about my health and worrying why I feel so ill and accept it''s hypothyroidism and let myself recover with time.
Sadly it is the case that worrying can make you ill, so shifting your mindset is absolutely essential in your path to wellness.
Food sensitivities are individual but gluten and dairy are the most common I think. Grains and sugars can also be inflammatory so may be worth experimenting with cutting these out for a bit. Make sure you eat plenty of healthy fats for energy, veggies for fibre, and probiotics for gut health.
Hi Julie, sorry you're still not feeling good. I agree that you really should have that increase in levo - and have it now. Your doctor should not have told your to wait three months.
But, I've been thinking... You say your mother is hypo, is she optimally medicated, I wonder? Have you ever considered that she might be suffering, just like you? Oh, perhaps not in the same way, with the same symptoms - everybody's symptoms are unique - but suffering, all the same, and struggling to cope. You say she won't change, but maybe she can't change, because she's ill. Maybe she craves your support, as much as you crave hers. She doesn't mean to be cruel, but she can't help it, because she's ill.
I would imagine it was the hypothyroidism that made her so difficult to live with when you were young - I do know what that's like, because I'm pretty certain my mother was hypo, but never diagnosed, and she was a very difficult woman to live with, and gave my dad hell at times. But, it wasn't her fault.
And, of course, as well as hypothyroidism running in families, it's well-known that difficult childhoods (just like difficult marriages, which I also had) and abuse - either physical or mental - can cause hypothyroidism. So, like me, you didn't really stand a chance, did you. You were pre-conditioned to be hypo. And, your hypo symptoms are the anxiety, etc. And, it's possible that you've been hypo for a long, long time - pregnancy often sets it off.
So, whilst you have to accept that you have this condition - nobody can change the past - it doesn't mean that it can't get better, and have a better life. Much, much better. You are still pretty hypo with a TSH of 2.6, so you can't expect to feel much better yet. But, get that TSH down, and your FT3 up a bit, and you're going to be a whole new woman! lol I'm sure 2017 is going to be your year! By next Christmas, you will be fully able to enjoy it, and take any little up-sets in your stride.
So, here's to a Happy and Healthy New Year to both of us! And to everyone else on here! xxx
I wish I could believe that but sadly my mother is doing well with her hypo. She's very close, happy and sees her other children and grandchildren daily. Sadly it's just me she behaves like this towards due to the resentment towards me not forgiving my brother. She admitted as much during our chat last week. She wants me to forgive it all and be part of the family again, and basically because I choose not to to protect myself and my family I'm an outsider. She hates I feel like an outsider but admitted it basically is how I've been made to feel. I wish it was she's just this way with everyone but she is and that's why it hurts me so very much.
I'm having my thyroid tested in 3weeks so I hope then to get some answers and maybe that increase. I hate med increases as I worry about side effects but it is have to go to 75mg of course I will.
You must stop thinking about levo as 'meds'. I really wish everyone would stop referring to it as 'meds'! Levo is not a drug, it is a hormone. A drug changes things in your body. A hormone just replaces what should be there naturally, but no-longer is. Totally different things. Hormones do not cause side-effects. But, if you tell yourself it's going to, it probably will. We all have to change our way of thinking about thyroid hormone replacement.
cant offer much on the thyroid side at this point - as a new return who has been healthy on desicated for yonks and just been through a course of useless levo i am an inexplicable mess (thanks gp). on the other hand i went through something similar family wise. in my case years back my estranged father rang in the middle of a happy dinner with friends, offloaded heaps of guilt and hung up with promises of doing better (is worse). ..it turned out he had been in a car accident/ nearly killed and was looking for somewhere to release his own crap. what caught me by surprise was how traumatised/ grief-stricken i was - had always imagined such an event would make me feel better. in fact it knocked me off for quite a while because it brought all the b.s. to the fore without the promised improvements, in effect i relived it all. it shifted my learned theory about putting things right - everybody says to do it BUT in my opinion enter with extreme caution. my new theory is while the crap must come out/ be kicked to the kerb somehow, leaving this shite in the trench comes in layers, not single events, but that a big one is the beginning. perhaps you have just had your big one
being happy and enjoying your life/ not letting disfunctional people hijack you/ yours is very important - the last thing you want is a bigger problem set by the stress of these things that arent in your remit. i was uber healthy, chilled out, almost dare-i-say HAPPY until a marriage related extended period of severe stress left me with hashis and a tsh of 2000. my health will never be the same - dont go there. i believe very much that stress is a key link to the development of thyroid issues, that endos arent there yet means nothing - 5 years ago cancer had nothing to do with imunity, remember?
it sounds like you have a good life and nice family - congratulations and well done. best clear the stress out of your life a bit before you do have a serious thyroid issue - if you fail to manage that you will find yourself spinning to the disfuntional tune of endocrinology, a medical blip so utterly replete of intelligence and abilty that it will make your birth family seem paradise
I have just joined HU and in the early stages of understanding why I feel so awful - I believe I am Hypothyroid but at that early stage of understanding what the hell is going on having hit the age of 52. HRT not enough, TSH now at 6.58 (3.50 18 monrhs ago) so other hormones and health need attention. Reading this forum has been helpful beyond words and I am so grateful.
Aside from that I can relate to the family stress you are experiencing with you mother and siblings - it is like grieving. In July 16 I felt so utterly let down by my mother and her self centred ways that I felt unless I stopped having her in my life I would be an emotional mess. I have learnt so much about scapegoating, being the invisible child and family triangulation that I know it was the best action for me. I don't advocate that extreme approach for others, but low non personal contact is often a good start - limit the toxic people in your life and don't talk about personal things especially if they have a habit of turning that information against you. I realised I did not set boundaries with my mother (because she was my mother) and there is such a taboo in society. I know for those who have loving parents it is incomprehensible to see it could be any other way. I realised I had been a mother to my mother - and never got any support from her for most of my life beyond the basics. Why would I, when I mattered so little. To her people are resources, no more no less. Not to mention the emotional game playing.
I now realise after much self healing and learning that she may well have mental and physical health problems. But I am not yet so strong to be able to reconnect with her.
There are lots of online tools to self help with CBT to tackle and challenge the feelings and thoughts of low self worth. Cognitive Restructuring helps to reframe situations. Mindfulness and limiting negative thinking - the constant replaying in your head of negative thoughts. Become conscious of doing it and make a decision to stop and think of something else - a pretty flower, your kids smiling faces - anything positive. So that you can soothe your emotional mind. In time you can reflect on difficult situations with a clearer head.
I wish you every success in becoming master of your own good health 😚.
I know I'll be asking for help myself from you wonderful folks. In the meantime I am learning so much about vitamins and general health and everything I can for my next visit to the doc.
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Thank you for your kind reply.
I can now see the link between my ill health and my family issues. I believe the last few years have brought on the thyroid ill health from far too much stress.
I agree, we think we have to accept our mothers and their behaviour even if it's bad behaviour because they are our mother and we cannot live without them. I have got to the point I can see I need to change that view and live my life happy and I can't do that right now because of the constant rejection and anxiety when I see my mother or sisters. Having children though it makes it all so much harder for me.
I wish you lots of luck in recovering, you have a good positive attitude.
Thank you
Julie
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It must be so much harder with young children and I sympathise because it presents many more complications.
I realised I kept putting myself in a position to be rejected. Though it was immensely painful to accept and caused a massive crash I could see only I had the power to stop others hurting me. To stop being their doormat. I am by nature someone who thinks of others more than myself and have to stop myself. Like you I have a very supportive husband who is helpful in keeping me on track and reassuring me. But it's not easy to feel like you don't have to say sorry all time ☺.
And pay special attention to these symptoms because coming from a dysfunctional and toxic family, I have every single one. stopthethyroidmadness.com/a...
Very possible you have PTSD. A toxic home life is no different than a war zone and will deplete your adrenals from running in fight or flight mode all the time. All this was very eye-opening for me.
I do believe all the stress I have been under in recent years led to my thyroid ill health.
The thing with testing adrenals is, my GP won't recognise the results so if I test them what can I do if the results show anything up? That's why I haven't bothered to test them knowing that doctors don't recognise the test or results and that adrenal fatigue isn't itself an illness unless you have addisons disease. So that's why I have not tested my adrenals and just trusted this is my thyroid.
I have noticed the connection between seeing my family and my huge energy crashes so I believe the stress and anxiety it causes me makes me ill with stress and in turn my body crashes for a couple of days after. I can see the link between high adrenaline/fear and my crashes.
Do you have the money to see an alternative doctor who does recognize adrenal exhaustion? If not, I suppose you could do what I did and do it yourself. Hydrocortisone is cheap online (I am in the USA, btw) and can be started slowly and built up. The Thyroid draws power from the adrenals so if those are exhausted taking thyroid meds aren't going to do you any good and will cause more symptoms. Message me and I will send you a place to get hydrocortisone. I'd recommend getting off thyroid meds altogether and then building adrenals....for a good while. Then slowly reintroduce the thyroid meds.
This is also a good blog to read. Her doctor started her off on 25mg cortisol but that was way too much for me. I now take 30mg per day but it took me awhile to build up to that. So always start low and slowly build up.
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lol - you can even have fun playing them with your kids. Can you go for little walks in the evening with your husband? Try and find something that is a little more interactive than general tv ect and relaxes you whether it be knitting, drawing or pole dancing!
How did you feel before diagnosed?
