Why am I feeling worse not better?

I'm sorry to post again but I'm so upset and have nowhere to turn.

Quick recap for anyone new who doesn't know me. I started with chronic fatigue in summer 2015. Gp ran test, one being thyroid and it showed....

tsh was 5.35 (0.35-5.5)

Ft4 10.2 (7-17)

B12 212 (190-900)

Feritin 15 (15-150)

Gp said to take iron and all others were fine. He ran full blood count, liver, kidney etc on top. I wasn't anaemic but ferritin was low. I then cane to this site to ask advice on my tsh as my gp said I wasn't borderline and I was fine. I then started supplementing iron and b12.

Continued to feel tired and in November 2015 my son told me he felt suicidal and depressed. He was 11 and being badly bullied. I had 3 months of hell and the NHS gave little support. It led to me being bed bound with severe leg weakness, dizziness where it felt I was walking on a boat, awful fatigue...it felt like a huge crash. Gp came to the house very concerned, did lots or checks and diagnosed stress and a trauma was the cause. I'd been attacked by my brother in 2012 so had history of trauma and stress. He said it had been another trauma and caused a bad reaction. I stayed in bed for a few weeks on and off. Gp came to see me again in the December and ran bloods. Again all fine, b12 had risen to 470. Ferritin up to 31. Folate fine. Full bloods, liver and kidneys ok. Just cholesterol a tad high. January I felt no better. Constantly fatigued, weak legs, feeling off balance and crashing easily after a trip out or housework. I'd be bed ridden feeling dreadful. I ran private thyroid bloods and they showed ..

Tsh 6.53 (0.2-4.2)

Ft4 14. 2 (12-22)

Ft3 5.3 (3.1-6.8)

GP diagnosed me subclinical.

March 2016. Same ranges as above

TSH 7.5

Ft4 15.8

Ft3 5.6

May 2016

TSH 9.28

FT4 15.7

I then went on levo 25mg. Re tested July 2016.

Tsh 6.9

FT4 17.53

Ft3 5.52

Ferritin 49.5

B12 1070.

I stupidly stayed on 25mg and in September my results showed my tsh had jumped up again.

Tsh 7.9

FT4 16.4

I then went on 50mg levo.

November 2016

Tsh 2.66

FT4 18.7

Ft3 5.0

I stayed on 50mg.

January 2017

Tsh 5.7

FT4 17.5

Ft3 5.0

Gp also ran a lot of bloods November 2016. Fbc, blood film, folate, Feritin, hba1c, random glucose, kidney and liver function, creatine kinase, glandular fever, nuclear antibodies... all ok. Sodium was low so had to re test and came back fine at 138. Random glucose was raised at 8.9. Gp said it was fine but now 3 months on he's said he is concerned I have diabetes causing my fatigue and wants to do a hba1c every 3 months despite last year my hba1c being 35 both times. Well in normal non diabetic range. All other bloods ok.

I went on 75mg of levo 4 weeks ago. Second week I had some energy, able to walk my dog daily, felt less weak and far less anxious. Then the last 2 weeks I've felt maybe worse than usual. I've had 2 crashes which were after a trip to the park for half an hour. Weak legs, fatigue and generally ill lethargy body feeling. Feeling woozy, brain fog, anxious, depressed, crying all the time... literally terrified why I feel so bad. This last year has destroyed me. I had anxiety and agoraphobia for a year or 2 after my brother attacked me but with therapy I overcame it all. Then once I began feeling this weak and fatigued I had a panic attack at a nurses appointment and wham agoraphobic again. I have to have the gp to my house and I panic just doing that. I cry every day because I'm scared of how ill i feel. I wake every day drained and weak. I shower and do breakfast and then have to rest again. I have 3 children and they deserve a mum who is well. I'm 37, 5ft tall and 8 stone 8lbs. I was always painfully thin all my life but the last few years I gained weight after going on a small dose anti depressant to help me eat and sleep. It helped me after the attack.

My gp saw me 4 times last year and plenty of calls to discuss thyroid results etc... when he saw me in August I was in and huge crash, he blamed mood, anxiety or a virus. He knew I'd been crashing and fatigued all year but never seemed alarmed. He had done full MOT bloods and physical exams and said I was ok. Then suddenly last month he rang me to discuss thyroid results and he said it's not normal after a year I'm still so heavily fatigued and weak. He said he was concerned and wanted to run diabetes tests every 3 months. I was surprised as my hba1c was good all last year, I've no history of it in my family, not over weight and eat healthy. He still it causes fatigue and and as I had 1 random high glucose which was right after eating a sugary nakd bar, he wanted to check if high glucose was making me ill. He then said the full MOT he did just 3 months ago he wanted to repeat it now. I asked why and he said to make sure nothing has changed. I told him it concerned me aa he was suddenly so worried why I'm crashing and fatigued so badly. Where as last year he showed no concern why I was so fatigued. He said he was sorry for now worrying me buto I said to him I'd got a print out and my November bloods were great, best they've been in years. He also told me that full MOT was to reassure him and me that nothing more sinister as happening. He said then we could just focus on thyroid and now he's wanting to use me as a pin cushion again and put fear of God in me. He's said he wants to refer me to a general medical doctor in a few weeks if my thyroid results show 75mg has got the tsh down to normal levels. I asked why and he said he will run more tests, possibly same ones gp has done and maybe diagnose cfs. I'm beside myself with worry. I'm agoraphobic so I've no idea how he expects me to throw myself into a hospital right now.

He just doesn't entertain thyroid can make you as ill as I am. I daily feel weak legged, heavy body, drained all over and fatigued eyes. Brain fog, unreality, feelings of woozy or off balance but gp has said balance wise tests ok, when I walk i just feel so weak and rough and I cry all day why I feel so bad. I've developed severe anxiety and recently diagnosed with depression after scoring high on gp test and therapist test. I can't seem to do much or I crash and land myself in bed weak and fatigued beyond belief for a couple of days. My mum visit after Christmas and wanted a huge heart to heart about how she's not been a mum to me since my brother attacked me, she's not offered any support to me this last year. It's hurt and as a result we don't have a relationship. After her visit I crashed severely for 2 days. So anything emotional or physical I crash. My family treated me terribly for 2 years after the attack with abusive messages telling me to forgive my brother etc.. it was awful so they caused me constant stress so any contact from them causes me panic and stress.

Since the increase in levo I've felt a little worse the last week especially. No energy to walk my dog, feel I'm dragging my weak heavy body around all day and too anxious to attempt anything due to worrying about how bad I feel. My friend thinks it's stress, she thinks since thr gp rang last month with his worries suddenly and wanting to refer me I've been highly stressed and anxious which has led to me physically feeling worse. I'm not so sure. I thought I'd feel better on thyroxine at higher dose, surely my tsh be lowering by now. I felt great in November, I had 3 brilliant weeks once tsh was 2.6. Then wham December hit and I had an anxiety setback as that time of year triggers me as my mother and sisters get in touch and it triggers my past traumas with them. Which results in severe anxiety. My anxiety was severe for all of December and that's when my fatigue worsened, crashes returned and my weak thighs were constant. I've improved anxiety wise since then, I'm much better now that month has passed but it's left my health in this state. I did a saliva cortisol test early January which was slightly high for each of the samples. Gp said it looked like stress and Genova said psychological stress would cause that kind of profile.

Sorry to offload. I'm worried this isn't my thyroid, was I right to go on thyroxine, why am I dealing so bad the last 2 weeks on levo increase, can thyroid cause how I feel?? My gp treats my thyroid but he's suddenly wanting to find another cause and even clutching at diabetes when my hba1c is fine. Or wanting to refer me to a general medical doctor. I see a therapist thank goodness and even she has said the reason I'm so anxious is because when I feek bad I can't tell myself it's just my thyroid or chronic fatigue because my gp is worrying me and digging for another cause. She's righr, it's turned me into a nervous wreck and I'm spending every day in tears when I walk wound. I'm spending my days worrying all kinds of things. Have I got terminal cancer and after a year he's missed it as he dismissed my fatigue all last year, is it cushings, diabetes, brain tumour.. you name it I'm worrying. I wasn't until my gp concerned me. I have always though deep down worried as time went on why I still felt so bad a and if thyroid could cause the level of fatigue and weakness or the crashes i experience.

I'm sorry this got long and I'm sorry for posting again, I'm sure you're all sick of me. If anyone can give me a glimmer or hope or reassurance I'd appreciate it. Right now I'm just confused about what's going on and what to do.

Julie

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113 Replies

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  • I'm sure I've told you this before, but you've probably forgotten it : it is perfectly normal to feel well on a dose increase in the beginning, and then find that the symptoms are creeping back again. This is the way it works, nothing sinister. And, all it means is that you need another increase in dose.

    Sit it out the full six weeks, and then get tested. And, if your doctor won't give you an increase, have him shot and buy your own. You are a long way off being optimal. And, until you are, this is the way it's going to go every time : you feel well, then you don't. You increase, you feel well, and then you don't. That is the logical order of things, and there's nothing you can do about it, you just have to cultivate some patience and sit it out in the knowledge that, eventually, you are going to be well again. :)

  • Thanks Grey, very reassuring, as always.

    He's just worried me something more sinister is going on and as you know I spend my days anxious about why I feel this bad. My symptoms feel worse the last 2 weeks, I'm more fatigued than usual, weak more than usual and I'm even very sensitive to the day light which makes me feel really woozy? That's a new one.

    I think my gp will increase the levo if im still not under the 2 but will he be concerned levo is actually making me worse?

    Julie x

  • Not if he's got any sense. Question is : does he have any sense? It's far too early in the journey to be thinking about does levo suit me or doesn't it. You aren't on a high enough dose to know, yet. As I keep saying : one step at a time. Stop trying to get ahead of yourself! :)

    Just getting your TSH under 2 is not good enough. He needs to keep increasing the dose until all your symptoms have gone, and to hell with the TSH. It's irrelevant unless it goes high. You need to dose by the FT4 and FT3, not the TSH.

  • That's the thing grey, has my ft4 and ft3 ever.even been bad? That's why I worry should i even be on levo.

    I bought a book to understand hypo and all it talked about was hashimotos which I don't have.

  • You must have bought a book about Hashimoto's! lol

    We've been over your FT4 and your FT3 a thousand times. Why are you still worrying about it? If you shouldn't be on levo, you would know by now, believe me. You'd be climbing the curtains! You really, really, really should be on levo.

  • Thanks grey, we have discussed the frees before but my gp doses due to the high tsh. Thst raises so he wants it down. Many on here comment on how high my tsh is too. It confuses me lol

  • The TSH raises when the pituitary senses that there is not enough thyroid hormone in the blood. That's the key phrase : not enough. Doesn't matter what you think, your pituitary doesn't agree!

    Your doctor talks about lowering the TSH, but what he really means is raising the Frees. I doubt even he will manage to do one without the other! lol

  • It doesn't really matter, the treatment for Hashi's is the same as the treatment for uat. (Have just edited my reply as I see you've been tested for ABs.)

    It is best to tackle one issue at a time.

    Hashi's/uat can *absolutely* cause this kind of fatigue, anxiety, weakness etc. If you look around the forum you'll see you're in good company.

  • Thank you. I've been terrified since my gp called me recently panicking why I'm so fatigued and suggesting I needed everything re tested. He's put the fesr of God in me because last year he wasn't concerned about my crashes or fatigue, I'm sure he thought I just imagined it and now for him to be so worried and wanting to do tests in afraid. I'm afraid what if sone thing was missed and I'm now terminally ill of i feel this weak and fatigued daily. It's horrible.

    I want to try to give myself 2 weeks of positivity. Dping things at home I enjoy, a short dog walk if I can but not to push myself... reading my book, knitting, meditation... so keeping myself positive to then see I can feel things get a little better to see whether stress and anxiety are actually making me even worse. It'd just difficult because the moment I walk around and feel weak, fatigued, woozy and yuk I panic inside and cry. Negativity takes over and I imagine I've ever terminal illness going. Argh it's do frustrating. Maybe I need to lie in bed still for 2 weeks haha.

    Thanks again.

    Julie x

  • Jingy, I went through very similar symptoms to your last year, as you know. I saw many doctors, all of whom told me my symptoms were not thyroid related. Well they were all wrong. I am now much better and you will get better too. Don't give up hope!

  • I am so glad things are much better for you. I am scared I will stay this way forever or they have missed something this last year and I am terminally ill or something. I know it sounds OTT but I am just so afraid as my GP just doesn't seem to reassure me thyroid can do this and just wants to constantly test for more things, and is fixated on it being diabetes when I have a good HBA1C level. Urgh. I am sick of tests and worrying.

  • By the sounds of it, you may need both T3 and T4. Giving just one is "Old School". And maybe it's time you try NDT (natural not synthetic) WP or Naturethroid.

  • Stevec, do you know why you were hypo? Do you have any blood test results to back up your claims?

    For the most part, hypothyroidism is irreversible. Just taking dried bovine thyroid gland - with the hormones removed - and calcium (why calcium?) will not 'sort' it. If a person has a damaged thyroid gland, and is in need of thyroid hormone replacement, your suggestion that just taking this supplement is all one needs, could be dangerous. There are no 'miracle pills'.

  • I am really sorry you are suffering so badly. As far as I know, either you cannot tolerate levothyroxine at all and you would have to take another type of thyroid hormone.

    I think your doctor should refer you to an Endocrinologist and I hope you get someone who is good.

    Some people have a faulty gene which makes the person unable to convert T4 (levothyroxne) at all into T3.

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

    Ask your GP if you can have a T3 blood test as well as a Free T3 blood test. The reason being it is T3 which runs our whole system and with insufficient our body cannot function whatsoever. She may be unaware of the defective gene.

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

    Another problem for us is that the hormone we take contains fillers/binders which can have a bad effect. It has been recommended that 1 hour before taking hormone tablet that we take one antihistamine tablet and if we don't have a reaction we have to change to another made by another company.

  • greygoose comment makes sense

  • your body is most likely like all of ours, lacking in IODINE..... i have hypo- thyroidism and i gained like 50lbs, even AFTER i began taking SYNTHROID !! my recommendation to you is go to an ENDOCRINOLOGIST, not just a GP !!! i do have my thyroid tested every 3 mos, but oh my god, i forget to take it alot and i could seriously become a homicidal maniac w out the medication !!! i have a very hard time believing that so many of us have problems w our thyroid gland...yes it is a very small gland yet the most important gland in our body !! i swear i could write my own book on it but i am just too damn tired...... as far as the antihistamine goes before it, i never heard or read that but there are so many articles on this that we could all be getting different readings !! OOPS SHAWS RECOMMENDED THE ENDOCRINOLOGIST FIRST... yes that is right !!!

    God, just go until you begin to feel the way you KNOW you should feel !!

    Never let a Dr., disregard your feelings or questions...they ARE not GOD !!!

  • I'm hoping I won't have to change to another type of thyroid hormone because wouldn't I feel bad coming off the levo?

    I take the wookhart brand I think it's called of levo?

    I shall see if medicheck do the t3 test. I do ft3 each time usually but haven't had the t3 test.

    That's my fesr that I need an endo because my ft4 was never that low and ft3 ok. Also tight noe I couldn't step foot in a hospital due to how ill i feel physically and the severe anxiety it would cause me. I'm trying I work on my agoraphobia but find it hard being this unwell physically. I push myself to go out walking, parks and shops them wham I'm bed ridden again with fatigue.

    Thank you for your helpful replies.

    Julie

  • If you go from something you don't feel well on (in this instance, levo) to something that suits you you won't feel unwell coming off levo. But it seems early to dismiss levo if you've never been on enough of it to help you.

    Try not to worry about the agoraphobia, it is a symptom. If it persists after your uat is treated you can focus on it then.

  • Thank you.

    My agoraphobia I can tell is purely due to how ill I feel. I push myself out to not be fully agoraphobic but it's always around how fatigued I am that day whether I can go our or not. If I wasn't ill I'd be over the agoraphobia very quick. I had agoraphobia for a year after my brother attacked me and I overcame it so I know I can, it's just the illness in the way and probably the sole cause.

    Thank you

  • As a fellow agoraphobic :-) I suggest you stop thinking of yourself as agoraphobic if it is contingent on fatigue and illness. It's like creating a whole new syndrome when really you may just be dealing w temporary symptoms. No one wants to go out when they're ill and exhausted. It isn't irrational to want to stay in when ill.

    If your illness has been dealt with, you're on the correct dose of meds and you're still afraid to go out then reevaluate.

    It's just a thought. :-)

  • I keep thinking that too but the reason I say I'm agoraphobic is because ill people could attend an appointment or go to a hospital and I know I can't as I panic too much. So I call myself the agoraphobic which only makes me feel worse I know lol.

    This illness has a lot to answer for lol

    Julie

  • I was just wondering if reframing this as a symptom might make you feel better about it, but sometimes naming things can also help, it's whatever works for you. :-)

  • I worked with an elderly lady with severe disabilities many moons ago and she was agrophobic and autistic and non verbal she hadn't been outside for over 20 years and was in the horrid mental homes of years ago previous to being put onto this house run by a charity. She was such a character an amazingly intelligent lady who just didn't talk but was also so social. They couldn't get her to a hospital even as she would have a major panic attack and lash out. She wouldn't go beyond the back or front doors of the house as she had a major panic. She spent most days just sat in a chair and one day I thought I am doing something about this now. Another support worker there and myself spent hours and we took tiny steps with her daily every day a bit more and a bit more until she wanted to turn back, it took weeks! She did it eventually she was walking around and going in the mobility van into town with the other tenants. I was so proud of her. Don't push yourself and be hard on yourself and remember its always small steps not just physically but mentally also and you will get there. It's so difficult when you are ill and feel like complete rubbish but you will get better x

  • Thanks Katie

    That's lovely you helped her and I bet she felt she owed her life to you as agoraphobia is just awful. It destroys your life.

    I know my agoraphobia this time round is purely due to how ill I feel, and the lack of confidence it's brought on. Feeling so weak and fatigued I am too afraid to go anywhere without hubby but I have started to walk my dog again alone and I drive the children to school which I have throughout this last year.

    4 years ago when I was agoraphobic it was purely due to the attack I experienced and the fear of going out incase I saw my brother or family. Then i got stuck permenantly on fight or flight which trauma does. I overcame it so I know I can again but this time the main obstacle is the health.

    Thank you for your kind replies, such a lovely story.

    Julie x

  • That's a start then and keep doing it. It's all small steps forward and when you are fully well you will look back and realise just how far you have actually come. As soon as your thyroid levels are OK and good I would put money on everything else falling into place for you. X

  • Thanks Katie. I hope so x

  • Jingyd35,

    You have FT3 tested. You don't need TT3 (total T3) as well.

    You don't need an endo unless you have been optimally medicated for some time and thyroid symptoms persist. Referrals to NHS endos usually take months. Finally, even if your GP suggests a referral you can refuse.

  • Thank you so much Clutter. That's good to know.

    I've refused his suggestion of a referral to a general medical doctor as that's no different to a gp. He still says if I continue to feel this weak and fatigued he will want to refer me but there's little point to be diagnosed with cfs.

  • Very interesting comment about binders and antihistamines do you have any references or links for this subject,I recently started taking antihistamines for a headache and they improved my digestion and transit dramatically which was totally unexpected

  • This is a list of clinical symptoms of hypo, and to relieve them we need a decent dose of thyroid hormones, which has to be gradually increased.

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

  • Hi try not to stress yourself too much, getting right level of medication just takes time, you will get there in the end.as gg says it is quite normal to feel better after couple of weeks and then crash again, it's because you haven't got to right level of levo yet. You might be one of the people who needs your t4 towards top of range to feel well. My t4has to be at top of range and tsh needs to be suppressed before I feel well. A couple of months ago I was feeling very similar to how you feel waking up in tears feeling depressed and anxious but with right dose of levo I'm beginning to feel more like my old self. So don't give up , I'm sure you have already been told to make sure you have vitamins at optimal levels especially the B 12and B complex as these help with depression and anxiety l think your very brave going out when you have acrophobia as my sister has this and she can't even go into garden, it's such a horrible disease to suffer with, so think you are a stronger person than you think you are.i think your gp is trying their best but when it come to thyroid they are a bit out of their depth, they just don't realise that thyroid can cause all those symptoms so are constantly looking for other things to pin symptoms on.you know your body best just concentrate on thyroid first and get that properly medicated.

  • Thank you so much for your kindness. It means a lot to me.

    I have been going out almost every day recently. Walking my dog around the block for ten minutes. We go for drives or to the park. It's just my health causing the agoraphobia this time. When I had it 4 years ago after the attack I was like your sister and even going in the garden was tough. This time it's all caused by the anxiety my health has caused. If I didn't feel this ill I'd not be agoraphobic for sure. My hubby tells me I need test and not to push myself out all the time lol. I just feel an idiot I can't even go to the dentist or doctors; it's embarrassing.

    I'm hoping my gp will stop poking and prodding as it makes me more anxious. The November bloods were to be the definitive tests so we could just concentrate on the thyroid and he's now talking about repeating them or referring me for a diagnosis of cfs. He's good with the thyroid compared to some doctors as in he's the one suggesting the increases. It's been 4 weeks since I was last tested so in 3 weeks I will test again and go from there. I just thought I'd start to feel better on a higher dose and was my tsh even that bad at 5.7 to make me feel so unwell? Did you ever feel as ill as I describe?

    Thank you for your reply.

    Julie x

  • To be honest I've been to hell and back in the past look at my profile and it gives brief description, I feel I lost 2yrs of my life but it doesn't due to dwell on these things, I'm feeling better now and that's what matters. When my gp dropped my dose of levo a few months ago now due to suppressed Tsh it made me feel pretty unwell and my Tsh only went up to 1.74 and t4 dropped a couple of points in range I had to beg to get increase, I would have bought my own levo if gp hadn't given me increase I was desperate to feel well again. But I consider myself lucky as Levo works for me. Tsh of 5.7is high I'm sure if mine was that high I would feel half-dead.so just hang in there and things will get better it just takes time ,lol.

  • Thank you, I'm so sorry you've also been through this. It's truly awful and does Rob you of your life and puts it on hold.

    Are you hashimotos? I'm not. My fr4 and ft3 as you can see in my results have been low in range but never below. It's my tsh thsts been high. The highest was 9.28 and I couldn't walk around my house I was so ill. Yet here i am at 5.7 feeling equally as bad as back then.

    Thank you for your reassuring replies.

    Julie

  • Because your Tsh is high it's definitely means your thyroid is struggling to cope. So you will probably need increase in levo when you have next bloodtest results, I know it's difficult to be patient when all you want is to feel better but you can't rush things with the thyroid.just get next 3weeks over and get another increase under your belt then hopefully you will start feeling better.

    In answer to your question, no I'm not hasi, I have graves disease and had Rai which has left me hypo.

    The good people on here are very good at giving support I don't know how I would have coped without their help and support the last few months, we are all here for you if you need to talk or get things off your chest.

  • Thank you so much. You've all been very supportive. Xx

  • Keep at in Julie or if you don't like this drawn out process consider self medicating and testing privately. I could only take levo for a maximum 8 weeks and had to stop it so yes you would know if it doesn't suit you. You will get there eventually it just feels never ending when it is happening. Keep telling your doctor how you are which I am sure you do but make sure he increases at the correct time for you and you are not left under medicated for too long.

  • Hi Katie

    Yes I'm self testing via medicheck and gp accepts the results. He's good as he's the one suggesting increases.

    Can I ask how you knew levo didn't suit you?

    My gp calls me every 2 weeks at the moment to monitor my depression as I admitted to him I'd been struggling over Christmas. He wanted to repeat thyroid 3 months on the increase so I told him no 6-8 weeks so we agreed on 7 weeks. So 3 more weeks and I re test.

    Thanks for replying.

    Julie x

  • It effected my stomach really badly and I got major food sensitivities I didn't have previously. I became swollen all over. Just had a constant feeling of going to be sick any min now all day. Banging Head all day, migraines. Also made my hair fall out big time and although I was very hypothyroid before this I never had hair loss. I also reacted to every soap, moisturiser, shampoo I used and my head came out in big sores. These are all hypo symptoms but within 4-8 weeks of taking it I just felt worse so had to stop.

  • Health anxiety is a fairly common symptom of being hypo. I rather suspect from what you say that as soon as you feel unwell all the anxiety issues that you manage to suppress when you are well come to the surface.

    Your TSH is high, so although your frees are reasonable, your body doesn't think its enough. We all have a place where we feel our best thyroid wise. I suspect in your case its with high frees, and you should be aiming to get them right up to the limit of the range(the doctor probably won't play if you wanted to raise them even further than that). This is one situation where doctors looking at TSH and ignoring the patient might well play in your favour. You need an increase in meds.

    What you say which amounts to 'When I am well I can cope' worries me. It means that only when you are 100% can you cope. This is bad news, because you will undoubtedly be unwell at some times in your life, so that base level of anxiety needs dealing with.

    I have two suggestions. The first is CBT, a much maligned technique which works wonders in certain situations, and mild to moderate anxiety is one of those. If you can't face going to see someone then buy the book 'Manage Your Mind' by Gillian Butler, and pick out an exercise or two you feel comfortable trying.

    The second suggestion is diet. I've seen countless people saying how their anxiety lessens on the ketogenic diet. But that is pretty challenging, and not really realistic in your current state. However its not too difficult to cut out sugar and grains, and that is the biggest step. You only have to try it for a couple of months, by then you will know if it has had an effect.

  • Thank you.

    My frees aren't too bad but hopefully the ft4 has risen again as I felt well when it was 19 and tsh 2.6, I felt 60% better which was great. So if I can aim a little higher than that hopefully I will be ok.

    My anxiety flared up during this bout of illness. I've been ill obviously again times in my life and coped fine but I've never had ill health thsts lasted this long or done as much damage to my life. Having this has led to severe anxiety, agoraphobia, loss of independence, depression... it's not just rhea fact that I feel terrible daily physically. That's why it's had such an horrible effect on me.

    I've recently returned to therapy which is great so far, she has a daughter with chronic illness so is very understanding.

    Yes I've recently followed that style of diet. I've been lowering my carbs and increasing my healthy fats and proteins. I'm lucky that I don't have a poor diet anyway as I eat pretty clean. My only treat is dark chocolate once a day. I hope to stick to this and see how it goes.

    Thank you for your advice.

    Julie

  • Lots of good suggestions here. You are very good at putting your thoughts and feelings into words. Many people find journaling helpful as a way of getting worries out of the head and onto the page, thereby "letting go" of them. You don't have to keep them, read them back or show anyone, just treat it as a kind of private "talking therapy".

    Illness can cause stress and stress can cause illness so it becomes a viscous cycle. Try to be kind to yourself and make some time every day for some peace and relaxation, eg a long lavender bath each evening to help you unwind.

  • What a nightmare sounds like cfs too.

    actionforme.org.uk

    Stepped exercise program might help. Ask for some from a Physiotherapist.

  • Thank you.

    My gp does think I have cfs and I may have had it well before the thyroid issue as I suffered fatigue since early 2015.

  • Do you get any muscle pains and weaknesses at all? Fibromyalgia is also closely linked to cfs and hypothyroidism.

  • I don't get any pain to be honest, I just get a feeling of weak thighs often, most days. My GP has done muscle tests and they aren't actually weak but certainly feel it.

  • Sounds more like chronic fatigue then. My mum is fibro and hypo and she gets more prominent pain in her muscles/nerves, neck, shoulders and so forth x

  • Yes I have heard fibro is very painful.. I rarely get pain, sometimes headaches but touch wood that's it. It's just weakness and awful fatigue.

  • Gosh it's a minefield sometimes isn't it. Thing is if we are low for a long amount of time or even deficient in something and not realised for years, it can have such a knock on effect to many different areas within the body. Have you ever checked adrenals?

  • I had a saliva cortisol test with Genova last month?

  • I am not too clued up on adrenals as never had to test but know cortisol is important was this OK? I am in muddy water now and a bit clueless haha x

  • My cortisol was 4 saliva samples and all slightly over range on each test. They commented it looked like a profile of someone with psychological stress. My GP agreed. x

  • I don't have pain either and regardless feeling weak ,and I often think my muscles must be very poor , my muscles are in good condition and I can, if have to, to do stuff that requires muscles. I can do sit ups and planking etc so in deep I am fit. I assume it's more about the energy/nerves that are causing the feeling of weakness instead one actually being weak.

    So when you still have hypothyroidism on tissue level it prevents muscles from working even though they'd be just fine.

    I can use my muscles, but for a very short moment before they stop working.

    I guess it could be same for you.

  • I get weak thighs mostly, I some days dread walking as they feel so weak but other days feel ok. When I crash the weakness is severe. I hate those days.

  • Yeah I had long period of weak thighs and I had to lean on something even while cooking. It was some point before I started to fix my adrenal fatigue.

    I still have it and avoid standing still. But it's not that bad at the moment. On worse days it's also my back and abs so sitting is too exhausting too. So I have to lay down often. But i have learned to live with it. Somehow at least.

  • I am learning to pace myself, slowly. Very hard when you have children though lol!

  • Yeah very different for you :(

    How is your eating schedule? To me it's a life saver to eat regularly even if I were not hungry. Less crashing.

  • I eat ok. I eat healthy, my nly vice is dark chocolate. Diet is clean otherwise. I eat regular too.

  • Dark chocolate is healthy! I can't tolerate it as it's high on histamine.

    Milk chocolate I can't tolerate because of milk.

    So no chocolate for me :(

  • Oh I didn't know that about dark chocolate.

  • Found this. If you have not read it yet I think you could find some answers here

    forefronthealth.com/hypothy...

  • Brilliant. Thank you!

  • Hi there, if it were me I would change my gp immediately. Change practice if you have to. He clearly has no understanding of thyroid disease. Good luck.

  • It's the only GP surgery in the town that is any good, the other 2 are bloody awful lol! In my clinic I have tried 4 GP's now. He was the only one that would treat me. One of the GP's told me when my TSH was 6.8 I didn't have hypothyroidism because I had negative antibodies!

  • Oh that's bad! I have found a doctor who's sort of willing to listen and I can usually pressure him into upping my dose if I think I need it, though he always threatens me with osteoporosis! He is basically clueless but pliable so it's a compromise.

  • Hi chuck, so sorry you have been through such hell. Reading your piece it struck me about the crashes after emotional and physical stresses, could this been also your adrenal glands. Have you ever had a cortisol measured or had a short synacthen test done to measure you cortisol response (normally done in a hospital setting) . It sounds to me (no medical training) that you could have adrenal fatigue. Cortisol issues at the extreme could be Addison's Disease through to the lesser adrenal fatigue where you need some adrenal support occasionally. If you have had a cortisol, publish the results here, if not ask your GP, in fact insist on it. Good luck.

  • Hi,

    Yes I had a cortisol saliva test done via Genova. I have posted on here, if you do a search you may find the post. It wss last month. My results were all slightly over range on all 4 samples. Gp wasn't worried and Genova said psychological stress profile by the looks of it.

    Thank you.

    Julie

  • Have you considered your adrenals? My blood showed high for t4...but it was because my body was not converting it and using it properly. In effect my blood was toxic with T4, it caused me no end of symptoms. Fibromyalgia, migraines, sever CF, weight gain..., to name but a few. Like you, I was at my worst following an awful lot of family stress, connected to my fathers death, 13 yrs ago, which, again like you, could not be resolved...and no matter what, it remains in the background.

    I saw Dr P about 7 years ago - in desperation. Working with him I eventually had about 3 -4 years of 'life'. Which proves it is resolvable.

    Please consider all the other connected problems that might be causing your thyroid to go out of sync. Adrenals for sure, maybe Lymes? (Son of a friend had similar issues, think, with him, it is Lymes) There is a reason for you feeling like this. There is a reason why you are struggling to get your levels under control. It is just finding it. Don't give up. Keep fighting.

  • Hi

    I just replied above to liz. I had a saliva cortisol test done last month. Cortisol was slightly over range on all 4 samples. It was said to be a psychological stress profile and not to worry. I have to re test in a few months.

    Lymes I've asked my gp. I've no joint pain, no rashes, no fever, no raised glands.... never been bitten by a tic to my knowledge. For me it's only fatigue and weakness, I say only. No pain is what I mean.

    Thanks

    Julie

  • Do not know if you have had Vitamin D checked or not? May be worth a look as last year I had terrible Hypothyroid symptoms but repeated bloods were fine. Turns out my Vitamin D was very low, so the thyroxine was not working. May be worth checking :)

  • Hi,

    Yes vitamin d was checked last year, sat at 75 I think it was. I do supplement it now.

    Thanks

    Julie

  • And my GP never thought of testing Vitamin D as they dont as the norm. He checked everything apart from Vitamin D, which I did privately.

  • I'm hoping this helps. I have experienced the exact situations symptoms and in short it's anxiety that is causing your body to go into the fight or flight mode and your adrenal in rushing through you your cortisol is high and you can't calm down. It's awful. I have season affective disorder and to not be able to get outside see the sunshine and exercising you lack vitamin D. I'm seeing a hormone specialist who will put me on progesterone and most like testosterone to balance out my body. I have to take Prozac for the anxiety which does work. You have to get your estrogen progesterone testosterone figured out. Meditate everyday to stress release and trauma release check out you tube for some good ones or see buy online. You have to change your thoughts seriously I know it seems crazy but it's your brain hearing you tell yourself all this stuff and you can't see clearly. Positive thoughts only and anxiety workbooks Are really helpful. Please know your not alone and in Canada (that's where I'm from) my gp will not recognize adrenal fatigue or anything related to chronic fatigue it's termed anxiety or depression. I have to pay a private Dr who will run more expensive tests. It's very frustrating having your body function so poorly. I know this is more than anxiety and it's up to me do the research. Read read read. And stop worrying by changing your thoughts and just stopping them everytime a negative one comes in your head. Hope this helps you out.

  • Amazing advice. Thank you so much.

    I honestly think it's severe anxiety. I'm stuck in permanent fight or flight since I experienced atrauma 4 years ago. I was attacked by my brother and my mother and sisters gave me gell for 2 years afrer as I refused for let him back in my life. My mum turned her back on me and it led to chronic stress as I'd dread bumping into them, my mum wanting to visit on the kids birthdays; Christmas..... I just had the worst Christmas ever due to panic and fesr about family wanting to see my kids. My sister text demanding she saw them and it sent me in on a nervous breakdown. I'd been doing amazing on 50mg of levo then wham severe anxiety on December and I've felt this weak, fatigued and crashed ever since. I got to the point I was so anxious I couldn't have any visitors or even open the door to the postman. I felt that bad. I'm still recovering from it and my body has felt a wreck since. I sound mad I know lol!

    I've gone back to trauma therapy since Christmas and so far I'm 4 sessions in.

    Could I inbox you so we could chat? I'd appreciate appreciate any advice.

    Thank you

    Julie

  • It is amazing how stress can affect your adrenal function and cause such fatigue. And more amazing that Gp's do not recognise it. One of my bugbears!

    Jaydalyn is right about trying to eradicate negative thoughts and trying to remain positive. If you can. However, I know how hard this can be when you are the one in the middle with all these worries, and fears. I have been there and am still trying to avoid it, unfortunately when it is 'family' it is hard to close 'all' doors - always some link, certainly ones I do not want to have. I am lucky that distance does help. (150 miles away from most - not nearly far enough! but helps) But when you are the one constantly on the receiving end it can be a very lonely place, and frightening. It took some of my closest family some time to realise I was not just being 'paranoid' and to understand some of what 'they' were putting me through. .

    The space to clear your head will help. If you can meditate that will be a start. Try not to let your worries and fears crowd your mind, find some form of distraction/ escapism...even a good book can help, or an activity that you have to really think about. And sleep. Good quality sleep. Don't honour the people upsetting you by giving them head space...

    And don't let your family bully you into contact...surely that is up to you? If they are stressing you then it has to stop, and if your kids are young enough, surely that is your decision too? (Again, I consider myself luckier, in that my kids are old enough to understand the situation and make the decision to keep their own distance. - that is one worry off my mind!)

    Good luck.

  • Family stress is awful isn't it. I had to walk away from family because of how terribly they treated me after my brother attacked me. No-one could understand why I was the one alienated and hated when I was the one he attacked. Madness. My mother and sister still demand to see the kids on birthdays and Christmas and my mother still tries to visit and she calls me every few weeks but is cold and it's a duty csll. I tell her how unwell I've been and she just mutters 'Oh dear'. No offer of support yet she tells me she stays at my sister's to support her if she has a bout of sinusitis or flu. It's all more and more rejection and hurt and last year I tolerated her visits but after them if crash in bed for a day or 2 feeling weak and fatigued. At Christmas was the worsr. She turned up wanting a big heart to heart. I let our how much she had hurt me since I was attacked and how she hadn't been there for me etc... tough chat and lasted 3 hours. I was bed ridden for 2 days feeling like i would die afterwards. I was dizzy, weak, fatigued and high anxiety. Awful. Since I've become terrified to tolerate a visit from her incase I crash like that again. Which means the children don't see her and my mother says I'm stoooinf her seeing them. I'm just trying to do what's best for me as I need to recover and what I've been doing so far tolerating her visits that cause me intense anxiety and fear, hasn't worked.

    My children are 14, 13 and 11. My eldest seems to want his nan and calls her often. The other 2 don't mention her as they're used to her being in and out of their lives the last few years I think. My mum's choice not mine at the time, she stayed away out of anger that I wouldn't forgive her son for a long time.

    Thank you for your kind replies. It helps knowing someone understands.

  • I do understand a lot of what you are dealing with. I have been the one 'ostracised' in the family, somehow, I have been made out to be the one causing the family rift, when I, along with one sister, were the one's picking up the pieces. The stress caused had an horrendous affect on my own health. (My father, ill at the time died within a week and my mother was worryingly struggling - no surprise at 79yrs)

    The resulting CF and other symptoms meant I had to stop work. It took me several years to get sorted.

    Cutting these 'family members' out of my life by avoiding them as much as possible helped. Despite their efforts to make their presence felt as often as possible.

    Unfortunately, I had no choice but to endure them again this last three years. I was targeted even more this time. Family members seemed hell bent on destroying my mental health, at a time when I needed all my strength to deal with my dying mother.

    They came close but they did not succeed.

    Remember what they say -'That, which does not kill us, will only make us stronger.'

    You have to look after you first. Do what you need to do for you to be able to cope.

    Maybe, if you feel your mother should be in your children's life, you could talk to her to say she visits on certain terms - that the past history/certain people are not mentioned or discussed.

    Perhaps arrange to meet away from your home, your safe haven. Meet somewhere neutral. Make it shorter visits to see how you cope, perhaps with your partner/ a friend in attendance too. Also somewhere you can walk away from if you don't like how things are panning out?

    Just suggestions, you need coping mechanisms.

    I found having my one sister I could trust, or mine or her hubbies, or a close friend there, curbed any potential issues or verbal attacks.

    I wish you every success in getting yourself into better health. It does sound like it is adrenal fatigue, caused by the stress, and that could be having a knock on effect on your ability to process medications properly. But I am not medically trained, just going from my own experiences.

    Find that inner strength to take control and deal with whatever comes your way. If your family can't see you without stressing you then they can't see you. Be firm but truthful with them. They have no right to make you ill. Sometimes just the thought of being in the same room as someone can cause that level of stress! But it shouldn't.

    Sorry if I sound like I'm dictating. I'm making suggestions only.

    All the best.

  • Thank you so much. Your suggestions are most welcome and helpful

    I feel for you, it sounds like family certainly did have a huge effect on your help too. It's so unfair when we are targeted and alienated. It's awful. My brother was a violent thug who even hurt his own children yet I was the bad one for being attacked by him and refusing to forguve. He attacked my hubby the year before infront of our children. I should have walked away then but was bullied into forgiving.

    My husband has taken the kids to my mum's house recently so she can see them, I didn't go. I've messaged and told her I need space right now to recover. I can't handle the rejection while I'm so unwell. My sister's 2 weeks ago blanked my son's birthday, one did the same on mine and my daughter's last year yet my mother defends them. I still send cards and gifts to my niece and nephews. Yet my mother still rejects me and I'm seen as this bad person splitting up the family when I'm the only one who still sends cards and makes a small gesture on these important dates. My sister last year ignored my birthday and a week later it was my daughter's and grans on the same day and my sister text asking me for grans address so she could post a card. She didn't send a card to my daughter but had the cheek to ask me for our grans address. I ignored of course. My mother basically called my a liar that this had happened and she will still ask me now if my daughter did really get a card. I'm refusing now to be part of this and prove I'm worth love from her.

    Thank you for your good advice and kind words. I appreciate it.

    Julie

  • Unbelievable how people can manipulate and twist situations and words to suit themselves. I've had the same, blatant snubs, and for some reason, after everything 'they' have done to me, they seem to think that I would want to still have contact with them?? So disallusional!

    You are doing the right thing. Like with my lot, it is probably the guilt the your family are feeling for not being big enough or brave enough to stand up to your brother, you doing so has shown them up. The same way mine couldn't cope with the fact that I was prepared to give up years of my family life to look after my mother. And because I wanted to do so - when I think back over the years to the sacrifices Mam made for all of us... I have a clear conscious and no regrets. I doubt they can say the same.

    You hang in there. You have made a start, just keep it going and see how your strength increased. Your mind will clear with the distance and hopefully your health will improve.

    You are stronger than you think.

    Regards

  • Thank you for your support and kind words it means so much xx

  • You are so welcome. Just don't ever think you are alone... There is always someone out there who will be able to see/understand. I know with me, it just helped when those closest actually started to see what was going on and realised that it wasn't just me...that I wasn't 'paranoid' as others tried to make me. Feel free to message anytime.

    All the best.

  • Very kind of you, thank you.

    It has really helped having someone who understands my situation. Thank you.

  • Jingy

    i still believe that levo is stressing the adrenals because you have had so many rotten things happening to you plus feeling a little better and then crashing is in the experience of my husband very typical on levo

    are you sensitive yo chemical smells like paint or turps or methylated spirits or nail varnish

  • I had the crashes long before levo. I only started Levo i last May.

    No I seem to be fine with chemicals, no reaction that I can recall, but I choose to use non toxic beauty products, toiletries and household cleaners.

  • hmmmm

    well the one diagnosis i would strongly reject is any suggestion of ME or CFS

  • I'm guessing it's the hypothyroidism and it'll take time. Plus I've the stress and anxiety of my past trauma due to the situation with my mother and sister still wanting to see my children and the stress that causes me.

    Thank you for your replies.

  • without doubt hypothyroid causes hell

    i remember your situation and i remain totally disgusted with your mother (its what i call mothers of sons syndrome ...sun shines out of sons backsides no matter what they do ...been on receiving end via MIL )

    My husband on levo was a total roller coaster going nowhere only NDT worked for him

  • I remember telling you. Nothing's changed. She came to see me just before new year as I refused to see her at Christmas as hubby took the kids to her. She turned up here unannounced and I had a severe panic attack. She wanted a heart to heart so I told her exactly how hurt I was the last 4 years since he attacked me and how this last year she knew I was ill and saw me ill but never offered support. Nothing's changed, she's not offered an inch of support despite knowing I'm not having a good time right now. She text last week saying she loved me and always wil. I replied saying I loved her too but I wish she had supported me this last year and she replied with 'i wish I could change things but i cant. Good night'. I've not heard a thing since. Hubby said it was cold and final. No offer to be here for me now, nothing. I give up now and I'm cutting all contact.

    X

  • Do not blame you one iota

    My husband had to do the same because his mother favoured 1st born son over him

  • Your health matters most and from my own experience (shared before) this kind of stress keeps you constantly on edge - in a permanent state of fight or flight.

    You are making the decision in kindness to yourself and it would be the advice you would give to someone else in the same position you are in. Don't beat yourself up - it will pay dividends in future and you can be more involved in enjoying your own family.

    Keep getting increases in Levo as well until you feel well - forget thinking it's a drug, see it as vit D which your body needs.

    You can only control you and sometimes walking quietly away from toxic people situations is the only option. Sad as that is, see it has a positive action for you and your kids and hubby.

    Remember JADE - no Justifying, no Arguing, no Defending, no Explaining.

    Set boundaries and think of your health rather than what others will think of you. Just because they think something, doesn't mean it is true.

  • Thank you.

    My mother rang me last night, she was cold and made little conversation, she rings every few weeks and behaves the same. I come off the call drained and anxious. The following day I feel weak and fatigued because of how bad she made me feel. I usually have a tension headache from it too. Last night she was so cold, barely spoke and the only time she did was to defend my sisters when I mentioned they hadn't sent my son birthday cards 2 weeks ago. She went straight to their defence and made me out to me OTT. She did the same last year when my daughters birthday was ignored. I send cards to all my niece and nephews yet my mum jumps to the defence of those who make no effort. I came off the call feeling so frustrated that I can do nothing right and they can do nothing wrong and they don't see their behaviour is wrong and turning me more away from them. I have made the decision to not even answer her calls anymore. I mentioned I'd been in a big crash with my health the last 2 weeks and my mum just said 'have you, oh dear'. I give up, I really do. I can't keep doing it to myself and in turn I am ill for my family. She hasnt' supported me the last 4 years since my brother attacking me so she is never going to want to be a mother to me now. I am now strong enough to realise that and walk away because as you say my health comes first.

    It's just so frustrating because every birthday and Christmas my sisters demand to see my kids, or more recently don't even post a card. One sister is getting the message but the other won't stop, she calls my boys phones and invites them to places behind my back. I confronted her over this last year and said she had to ask me first not my sons, because they are still children even if 13 and 14. She still goes behind my back and does it. She invited them to a trampoline park last week, my sons told me so I contacted her and said I knew she had invited them to which she said the boys had invited themselves, utter lies. My sons wanted to see their cousins so I allowed them to go. My daugher refused as she doesn't want to see my family. My sons though they miss their cousins and they miss seeing their nan so this keeps going on behind my back and it makes me so anxious.

    I have told my mum this last month that she isn't to visit, she used to just turn up and as when it suited her and if i was in a crash it would make me feel even worse. I told her we will do visits when I am back on my feet but for now if she wants to see the children she can pick them up to take them out for tea just her and my step dad. She hasn't made any effort to as yet but I made the gesture so she can see them.

    It's been this way for 4 years, my brother attacked me and they all resented me for not accepting him back into my life. I was then alienated and it was just all about them seeing my kids. I am classed as OTT and i should be over what happened to me because in their eyes violence is normal as my brother used to hit his own children, his dog, he broke my sisters nose and terrified all my mothers grandchildren including my children. I had to walk away for our safety. They are all so close to him and it makes no sense. I am so much happier away from them but I cannot get over the trauma fully because of their constant behaviour and my mother always rejecting me, offering no support, her coldness... it keeps me in the turmoil and I have finally realised this last year of ill health that she really doesn't care about me and it's time to move on. I have 3 children and I would never do to them what she's done to me. I told her at Christmas when we had a huge heart to heart and I was honest about how I felt about her, that if my child was ill I'd ask them daily if they needed me there to help. Her response was 'well maybe they wouldn't want you there every day'. I give up, she can't see what a terrible mother to me she is. It hurts as she can't do enough for my siblings and if they have so much as a snuffle she looks after their children so they can rest. She said she admitted she had abandoned me and let me down yet nothing has changed. I can move on knowing I did all I could to make her be a mother to me.

    Thank you for letting me talk.

    Julie x

  • Research the website on Natural Endocrine Solutions. Someone on this site gave me the tip & it is a brilliant site. I'm sure you'll get plenty of information. And there is a lady GP in the UK who has done the documentary on "Thyroid Secret". Sign up for her webinars, starting tomorrow, 01 March. These are free. Hope this helps.

  • Great. Thank you.

  • I apologies if I'm repeating what others have said, but there are too many replies to read through.

    I'd suggest the most important thing is to get your adrenal function tested. Use the saliva cortisol test from Genova UK - order via the main Thyroid UK website.

    Thyroid and adrenal problems go hand in hand and your anxiety and agrophobia, to me, point to adrenal issues.

    Dr Peatfield always says to treat adrenals first.

  • Thank you Rose

    I had the Genova test last month and posted my results here the week after. It showed all 4 samples I was slightly over each range and told it looked like psychological stress was the cause.

  • Who said that? An NHS doctor? They confuse cause and effect.

  • Genova, that was the comment on the results.

  • Have you considered trying something like Holy Basil or Phosphotidyl Serine to see if you can bring the levels down?

  • I take an anti depressant so I was thinking that you can't take herbs along with them. I need to research more.

  • Are you anywhere near Barry Peatfield's clinic in Crawley? He's the thyroid and adrenal king.

  • No I am up near Cheshire.

  • Julie,

    I apologise if I'm repeating what other people said. There are too many comments to read all of them. I understand that the highest dose of levothyroxine you were on was 75mcg? 75mcg is a very small dose! It is likely that you are either:

    - undermedicated on the small dose of thyroxine

    or

    - you may have difficulty converting T4 hormone and need a different type of thyroid medication. Are you aware that there are other forms of thyroid therapy: T4/T3 combination, natural dissected thyroid and T3-only? They are rarely prescribed on the NHS and some people chose to self-medicate.

    You need to have optimal levels of iron, B12 and D3 for thyroid hormones to work. Being "within range" is NOT good enough for a hypothyroid person. Paul Robinson in his book "Recovering with T3" recommends the following ranges as optimal:

    serum iron: over 90 μg/dl, ideally close to 100-110 μg/dl

    Total Iron Binding Capacity (TIBC): At or above the lower quartile of the reference range

    Transferrin saturation index* (serum iron divided by TIBC x 100%): 35 - 45%

    serum ferritin: at least in the 70-90 ng/ml range

    B12: Near the top of the reference range.

    Folate (B9): At least in the middle of the reference range.

    D3 metabolit 25(OH): 50-70 nh/ml

    Transferrin saturation index* - it's not a test. You calculate it yourself based on your serum iron and TIBC level.

    I hope it helps. If it provides any reassurance: I was in a very bad way for the whole of last year but I'm feeling much better now. There is always hope for everyone. This community is a great source of support and information so post as often as you need too. Take care xxxx

    Kitten1978

  • Thanks Kitten

    Yes I started on 25mg of levo last May, 50mg in September and 75mg as of last month. I repeat my bloods in 2 weeks.

    My ferritin was 34 in November in range 15-150. It's always been low and I can't seem to get it up any higher than 49. It's annoying. I take liquid iron as I can't take tablets, they set my IBS off.

    B12 was 212 August 2015 but I got it up to 1070, latest test it was 497 so I am supplementing again every other day with Jarrow 1000mg tablets.

    Folate was fine around 17 in a range up to 19.

    I had vitamin D tested last summer and it was 75.

    I am hoping things improve. I have been like this now 16 months and I feel right now I am worse not better.

    Thank you

    Julie

  • Hi Julie,

    The usual regimen with levothroxine is to start with a low dose (e.g. 25mcg), test after 6 weeks and increase the dose, tests after 6 weeks and increase the dose ...until you are on a full replacement dose with low TSH (TSH result between 0.5 and 2.0 mIU/L) and FT3 near the top of the reference range. It seems that your GP left you on a low dose of levo for far too long!

    You are right: your ferritin is too low. Do you take you liquid iron with vitamin C? Vit C is supposed to increase iron absorption. Preferably vitamin C containing bioflavonoids should be used, as it is easier to absorb. It's also good for our adrenals.

    B12 Jarrow is great. I helped me to increase my B12 levels. It's also good to take Vit B complex. Preferably one that contains folate (instead of folic acid) and B12 as methylcobalamin e.g. amazon.co.uk/Jarrows-B-Righ...

    Unless you live in a lovely sunny place your vit D levels will be much lower now, after months of winter. Most of us living in UK and most of Europe need to supplement vit D3 in most of the year. Unless your face and arms get at least half an hour of sun exposure daily, you won't get enough vit D. It would be good to test it again. D3 is actually a hormone, not just a "vitamin".

    Hopefully as you start taking full replacement dose of levothyroxine you will start feeling better. If not, there are other treatment options so don't despair ;) You need to keep going and there is a light at the end of the tunnel. Take care xx

  • Thank you Kitten

    I will re test my D soon then. I do have a vitamin d3 spray but I know you need k2 aswell to make sure it is absorbed which i keep meaning to buy.

    I take Biocare B complex. I also take Biocare vitamin C powder as tablets seem to not agree with me. I take this...https://www.biocare.co.uk/default.aspx?GroupGuid=29&ProductGuid=51360&LanguageGuid=EN which says it's made from magnesium ascorbate but apparently it's a form of gentle vitamin C?

    I take Feroglobin liquid for my iron, it''s a liquid supplement and on top a sachet of spatone iron each day recently.

    I had my cortisol tested with Genova last month, a saliva test. All came slightly over range for each sample. I was worrying i had addisons disease or cushings so that's why I took the test.

    Thank you for your replies.

    Julie x

  • You right: it's important to take K2 together with D3. Preferably the K2-MK7 form, 100-200 mcg daily. I take this one: amazon.co.uk/Vitamin-MK-7-N...

    According to the info on the amazon BioCare B Complex contains B9 as folic acid, instead of folate. It's better to take the natural form of B9 (folate), instead of folic acid.

    Can you cope with eating liver, e.g. chicken liver at all? There was a discussion about difficulties in increasing iron level a month ago healthunlocked.com/thyroidu...

    and SeasideSusie recommended eating iron as a good way of increasing iron levels : " A surefire way of raising ferritin is to eat liver once a week. I couldn't get on with iron supplements but approx 120g liver once a week has raised mine really well".

    Your body is probably trying to compensate low level of thyroid hormones by producing high cortisol. It should decrease once you are well medicated. Taking lots of vit C is also important to keep your adrenals healthy.

    Take care xx

    Kitten

  • I could of written this post myself after lots of tests i was referred to a Rheumatologist in August 2015 he diagnosed me with CFS i attended a group help sessions and after about 4 months the fatigue started to lift (i don't think it was the group) and i felt stronger i was able to get out and about all i did before was lay on the sofa before crying and sleeping but i still had a fuzzy head, feeling very dizzy and blurred vision like you I thought they had missed something and i had terminal cancer and i would be leaving my children behind they were constantly testing the same thing over and over again ,i realised some brands do not agree with me well all of them really but 1 is not as bad as the rest and awaiting an appointment to see an Endocrinologist but i felt exactly the same as you it is such a slow process i was told months till i would feel better which will be 2 years in April and I've been fighting all that time you will get there i still have crying days but hopeful they will disappear

    A locum Dr took me off all Levo i crashed right back to the beginning within 2 weeks so i know it's Thyroid related and not CFS

    Good luck xxx

  • Thank you for your helpful reply. I am sorry to hear you went through this too, I am glad to hear things are getting much better for you.

    I think I have the underactive thryroid and chronic fatigue on top, whether it's true CFS I have no idea. It's horrible. Did you feel anxious with it? I can't even go out to appointments or socialise. I feel a complete idiot and like a scared child. Ridiclious at 37 years of age.

    Thank you

    Julie x

  • Yes I still get anxious I haven't mentioned it to my family but I'm worse when I go out of the house but I'm still suffering with dizzy spells and blurred vision so I feel vulnerable I'm only on 25mg of levo at the moment I was on 75mg if I take anymore than that daily things really start to spin with heart palpitations this is why I'm seeing an endo I'm still fearful of over doing things and wearing myself out

    I just think I'm not feeling well and have been for a long time I'm going to feel anxious xx

  • And don't feel silly Xxx

  • I can relate. Going out for me is hard as I feel so weak, fatigued and woozy. Daylight even sends me feeling woozy. I feel so disonnected from life this last year having spent so much time at home, it's horrible.

    I sufer from anxiety even at home but it comes on from having too much time to myself and a year of ill health with no support other than my husband.

    Julie

  • My husband was home last week from work and it took the pressure off I worried less and didn't have to concentrate as hard if that makes sense.

  • Yes, when hubby is home I feel much safer, I get anxious alone feeling so unwell and having the children to care for. I understand.

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