Latest results. Very upset :(

Latest results. Very upset :(

I've been posting here since last summer about my battle with my gp to wise up that I had a thyroid problem. I spoke to him in March and he said if my thyroid tsh jumped any higher in May then he would agree to start treatment.

You all know I had bloods done in August last year on the nhs.

TSH 5.35 (0.35-5.5)

FT4 11 (7-17)

I went private with Blue Horizon in January and ...

TSH 6.54 (0.27-4.2)

FT4 14.8 (12-22)

Ft3 5.8

I then had a re test done 7 weeks later in March and my

Tsh 7.54

Ft4 15.8

Ft3 5.6

I had a repeat done yesterday with medicheck and I just got my results and broke down crying.

Tsh 9.28 (0.27-4.2)

Ft4 15.76

So it's a life of thyroxine for me. I've had the worst 6 months. I've been ill with chronic fatigue, weakness, anxiety, now agoraphobic mostly thanks to how ill I've felt, hair loss but the worst has been the fatigue. I've 3 children and it's been so hard. My husband is my only support as I've no family. It's been the hardest 6 months of my life and my gp just kept saying I was fine but in March he finally listened. I have energy crashes if I over do things. Even yoga can send me into a cfs type crash. He told me I've now also developed cfs with how I crash and have to rest so much.

My mum has hypothyroidism and he knew this too. I've no antibodies so that's fine. Last summer I had low b12 and low ferritin which I've had all my life pretty much. I'm 36 and am so upset. I've such awful anxiety I'm terrified of having a nasty reaction to thyroxine so I'm scared my life is about to change as I'm sure I will be on the Meds by Friday. Any reassurance re starting Meds would be great.

I can't stop crying. I'm shocked how fast it's jumped. I am silly and read a high tsh but normal t4 and t3 could signal a pituitary issue so I'm worried what if gp is going to treat me for hypothyroidism and it's something else. He seemed puzzled my ft4 was so good.

My life has fallen apart this last 6 months. I'm often off balance and feel the ground moving, chronic fatigue, body weakness, high anxiety and now I'm losing my eyebrows. I've not gained weight and I'm not cold. I'm not depressed either as scored very low for that but my anxiety is sky high and I now can't socialise all due to how ill I've been and how long I've been at home. I do the school runs and that's about it during the week. I'm very hard on myself too worrying I'm letting my children down as other people get ill and carry on with work and socialising.

Sorry for the self pity post. My husbandsaid I should be happy because at last this is going to get sorted. I speak to my gp Thursday morning, I've booked a phone appointment.

Thank you for all your support.

Julie

49 Replies

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  • Your symptoms suggest you are hypothroid. The TSH is not that high so don't worry about it. TSH can rise dramatically when you are hypothyroid (to over 100 or even 200). There is nothing to suggest you have a pituitary problem. The TSH is not a good indicator of hypothyroidism in all cases. Your doctor should put you on levothyroxine straight away in order to get rid of your symptoms. Sometimes when the thyroid is failing the TSH, fT3 and fT4 can jump up and down as the thyroid flares up inbetween its gradual failure.

  • Thank you.

    I've been very symptomatic since last year but it got worse when I was stressed over the winter. That's when I noticed everything got worse. My son was ilk and my symptoms were worse during those 3 months. That's when I had private tests and proved my gp wrong as he told me basically I was looking for problems that weren't there. Thank goodness I didn't listen. He said yes 6.54 was out of range but as antibodies were negative I didn't have hypothyroidism. I changed gp and he diagnosed subclinical but said if the next test showed even a slight increase id be on thyroxine. He would go against the nhs guidelines of treating at 10 due to my symptoms.

    Thanks for your kind reply.

    Julie

  • Jingyd35,

    High TSH with normal FT4/FT3 indicates primary hypothyroidism due to thyroid failure. It's low-normal TSH with low-normal FT4 & FT3 which may indicate secondary hypothyroidism due to pituitary dysfunction. Your FT4, and previously your FT3, are good because your thyroid is being flogged by high TSH to produce hormone, but that isn't sustainable indefinitely and, without Levothyroxine, FT4 and FT3 will drop.

    Most people do perfectly fine on Levothyroxine. Some will have a few adverse reactions for a few days but they usually subside within a couple of weeks.

    Are you supplementing B12 and iron to correct low levels?

    thyroiduk.org.uk/tuk/diagno...

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

  • Thank you so much your reply comforted me alot as I wasn't sure what was going on.

    My mum has hypothyroidism so I guess with the history it's why I've developed it.

    Yes my b12 was 212 last August it's now 500 as I've been taking lozenges to increase it. My ferritin was 15 now it's 34. I can't stomach iron from the gp so I take spatone which isn't very good at increasing.

    The only other thing I've been worrying about is adrenal issue because I've been under so much stress the last 4 years. My brother attacked me 4 years ago and over the winter my son got ill and I was highly stressed coping with that and it was during his illness my fatigue got much worse but I had been struggling since the spring. Someone suggested adrenals rising tsh but my GP has dismissed it. I guess I'm just worried as my tsh has risen from 6.54 this January to 9.28 now. It's a rapid increase.

    Thank you for your reply it helped alot.

    Julie

  • Clutter, I'm sorry to disagree with you (again), but I simply think you are wrong about this. I have primary hypoT, and my TSH was elevated and my FT4 levels below range at the time of diagnosis (FT3 levels were never measured back then). In my experience, your TSH will be elevated, and your FT4 (and FT3) levels will be low in primary hypothyroidism, as that condition is characterised by a thyroid gland unable to produce enough T4 (which also results in less FT3, as 90-95% of all T3 is said to come from T4 conversion). So are you really sure about that statement...???

  • Anna69,

    If you re-read what I said you'll see that I said high TSH is producing Jingy's current good FT4 and FT3 but that it isn't sustainable and levels will drop without Levothyroxine replacement.

  • My gp did say my t4 is high trying to keep up with the tsh and eventually it'll drop.

    But can you be symptomatic if t4 and t3 are ok?

  • Jingyd35,

    I would say your FT4 is mid-range, not high, and yes you can be symptomatic with in-range T4 and T3 because symptoms can precede abnormal bloods by months/years.

  • Is it the high tsh that'll cause what I'm experiencing symptom wise?

  • Jingyd35,

    I think it has to be a combination of symptoms preceding abnormally low FT4 and FT3 and the high TSH.

  • Thank you. I've had crippling fatigue and the other symptoms I mentioned since last summer that have steadily got worse. The adrenal fatigue has been suggested to me as things got worse over the winter when my son was worse but I know gp's don't believe in adrenal fatigue. My main 3 symptoms have been fatigue, the energy crashes and anxiety.

  • Your FT4 levels will probably be high as long as the thyroid can increase hormone production, caused by the rising TSH, which in turn tells the thyroid to produce more and more T4 (and, to a lesser extent, T3). Until, finally, the thyroid is no longer able to keep up, at which point TSH will continue to rise, in an attempt to get the thyroid to produce more hormones, whereas FTs will start to drop...that, in my experience, is when your TSH will go over range, and your FTs eventually end up below range. However, that can take years, and it seems symptoms can precede labs...meaning you can start feeling bad long before your labs actually prove something is wrong.

  • Sounds like what I shave been through this last year. My gp wouldn't believe I felt so ill.

    So is it safe to give thyroxine if ft4 is ok? My gp is concered of turning my hyper thyroid.

  • Personally, I'd say yes, why not try low doses of T4, and see if it helps? But I know I'm going against the medical establishment, and possibly even the guidelines of this forum, by saying this...:-/

  • OK, but that depends on WHEN you have your levels measured. If you have them measured "late enough" (as I did, about five years after the first symptoms appeared), your TSH is likely to be out of range, as well as your FTs. That was not clear from your previous post (at least not as far as I interpreted it). What I mean is: EVENTUALLY, primary hypothyroidism will result in an elevated TSH, as well as low FT4 levels (as well as FT3 levels, although I doubt many doctors measure that routinely...).

  • Anna69,

    I was commenting on Jingy's results NOW and explaining the difference between primary and secondary hypothyroidism. Jingy is currently subclinically hypothyroid (TSH 5-10 with normal FT4 and, if measured, normal FT3). If she isn't medicated she will become overtly hypothyroid (TSH >10 and FT4 and FT3 will eventually drop below range).

  • So is that why gps don't treat subclinical in the UK, they don't class it as requiring treatment until it hits 10?

  • Jingyd35,

    I think the majority treat when TSH is over range but some still wait for it to hit 10.

  • Hi Julie,

    Your husband is right in what he says. Thank Godness that you are finally getting medication.

    Focus on that for the moment. This is a starting point in getting back to better health.

    All the best

    J

    X

  • Thank you so much.

    It's been a long road. I've been so ill. I've had to give up yoga, workouts, socialising, taking my kids out... I've beat myself up thinking I'm a terrible mother. I've missed parents evenings due to how ill and anxious I've felt. It's horrible. I guess I need to just take it as I could get my life back. I'm just so sad. I'm only 36 and I didn't expect this to happen to me.

    Slapping myself for all the self pity lol

    Julie x

  • Yoga could be very helpful for your stress if you can manage it.

    Have you looked into dietary interventions? Here's an example:

    thepaleomom.com/autoimmunit...

  • Yes I've looked into diets..I recently tried vegan as I was mostly veggie but my fatigue got worse. I've since gone to a higher protein higher fat from animal.protein and feel a little better.

    I have a book on auto immune paleo diet but wasn't sure it could apply to me.as I haven't got an auto immune disease like hashimotos?

    I've done yoga for years now. I'm recently pacing myself and just doing slower lighter restorative type yoga.

    Thank you.

  • I think the PAI is really helpful for all kinds of health issues. My daughter doesn't have a diagnosed AI illness but suffered from depression, chronic fatigue and numerous hypothyroid symptoms. Her health and mood have improved dramatically since she started the gut healing protocol in November. The symptoms can get worse for 2-4 days before you start to feel better.

  • PS) Her hair has also started to grow back following iron and biotin (and lots of other) supplements. I learned from this group that ferritin needs to be at least 70 to grow new hairs.

  • Thank you. I will look into it more I think. I've been trying to make sure my diet is super clean and it's helped bring my cholesterol down. I went vegan which helped alot but my fatigue got worse so I'm trying to accept I need animal protein.

    Thanks for your advice.

  • This is a good video on the subject of fat and cholesterol:

    David Diamond- Demonization and Deception in Cholesterol Research

  • Fab video. I watched it all. Thank you. very reassuring. x

  • Dear Julie, if you don't feel sorry for yourself with all you have been through and are still going through, who will? Do feel sorry for yourself, do be kind to yourself.

    We, out here, know what it's like, it's exhausting, a doctor on TV recently said it's not fatigue it's total exhaustion. You'll be giving all you an to your son and having been attacked by your brother, I hope not physically, will make matters worse.

    It's hard to feel cheered when we feel so well and depression is a symptom of being hypo and with depression our thoughts are sad, regardless of good news and hope.

    You'll receive a lot of good advice and support and we're all wishing you a very good outcome.

  • Thank you for your kind reply.

    Unfortunately yes it was kind of physical. My brother had a serious mental health illness that was undiagnosed. He had become violent towards his partner and children, he has social services at his home and had it in his head I was the one that called them. He a year before he hurt me turned up at my home and hit my husband out of the blue infront of our son. I cut him off from that day. Police were called and he was cautioned. Then a year later one day I passed him in my car and he chased me. I drove to a police station and ran in. He chased me and cornered me and went to hurt me when he was arrested and charged with a few things. I later was told by my mum she was glad I went to the police station and not home alone because my brother had told her he wanted to kill me. Absolutely terrifying and for a year after I lived on edge, scared and developed an anxiety disorder and post traumatic stress which all led to agoraphobia, naturally when you think about it.

    I was 80% over it all then I became ill last year and I think when you feel weak, drained, faint, hot, dry mouth and extreme fatigue you really do feel frightened going out with your children or by yourself as you are scared of passing out in public, but it comes from actual ill health. So then my agoraphobia I think saw a back door to sneak back in through. Now my anxiety daily is about what if I needed to go to hospital, how would i cope, would i be highly anxious and they'd section me thinking I was a complete anxious mess lol! How would I cope away from home. All of this has just come from being stuck at home withdrawn from the world and not seeing anyone other than my husband and children. We do days out to the beach on my better days though as I do anything for my children to make them happy :-)

    Thank you for your kind replies to me.

    I am so nervous about my GP calling me today as i am anxious about starting levo. I fear needing to go into hospital so a reaction to medication scares the life out of me.

    Julie xx

  • Oh JingyD I understand, I was attacked by my then partner, totally out of the blue, he was taking medication and afterwards discovered that outbursts of aggression and violence were associated with it.

    I was so hurt and shocked, there's something about someone you trust and love doing this that is shattering. You must have been very, very frightened and thank goodness you thought of going to a police station.

    Like you, I had three children at the time and I think that increases our fear and anxiety, our awareness that we have to watch them going out to live normal lives and cannot protect them.

    On a cheering note, I am so much better now, I think you will recover too, but do take care of yourself and be very, very kind and gentle with yourself, just like you would for your own child.

    x

  • Things will improve I promise, it is difficult to see that right now as you are 'in the middle of it' but this won't last forever. Last March my brother was battling a brain tumour and I was diagnosed with hypothyroidism..things had never looked bleaker for me. Now, just over a year later, my brother has just had his 4th clear scan and thanks to all the help from everybody here, I am feeling almost back to normal (save for a few lingering aches and pains). The difference a year has made is unbelievable!

    So try to stay positive, get lots of hugs from your hubby and kids, try and take it easy for a while and get as much help and advice from this site as you can/need :-)

    Take care, hope you start to feel better soon xxx

  • Thank you so much Nat.

    I'm so sorry to hear of the ill health you and your brother went through but I'm so pleased to hear you're both improving. My world fell apart last November when my son told me he was being bullied and he was so low he was suicidal. That's when I felt my body break down and since theno my thyroid has steadily got much worse tsh wise as have my symptoms. I'm thankful he's now happier than ever and well. I've struggled energy wise the last 6 months and been off balance. It's been so tough but fingers crossed the end is now in sight.

    Can I ask did you have energy crashes if you did too much? If I over do it I crash badly like I have cfs..my gp even diagnosed cfs aswell as the hypothyroidism. It's do hard being a mum to 3 children and being like this but I'm so grateful they're all beautiful and understanding.

    Julie x

  • I like you think stress brought on my thyroid disorder..i felt fine prior to my brother getting the cancer diagnosis. But yes I have suffered energy crashes. Up until very recently (when I switched from levo to NDT) even just walking my dogs would mean I felt drained for up to 2 days after. Recovery from exercise has been hard. It is a bit of a rollercoaster so don't get disheartened..kind of a 2 steps forward 1 step back sort of scenario. Just try to be kind to yourself, don't try and do so much out of guilt..remember you won't feel like this forever and try and get out in the sunshine. If this last year has taught me anything it is to take more time out for me and to appreciate things more.

    I'm glad your son has come through things..can imagine how awful that must have been for you all x

  • Thank you so much.

    My crashes are most days during the week as I have to cook, clean, school runs, take care of my kids. I can some days just spend the day resting while the children are in school and I beat myself up for that thinking I'm lazy.

    Last summer I had to stop exercising. I was doing cardiologist and weight training but I'd crash badly for days afterwards. Now I can even feel that after yoga so some weeks I get little exercise. I do worry about that too.

    I can crash even after a trip out for the day or a simple trip to a few shops. I get home and my legs are weak and my body just totally drained. It's horrible. I've been like this for so long but theven last 6 months it got much worse so I swear stress led to my thyroid getting worse than it already was. It was 5.35 last summer, 6.5 by January and since January it's already risen to 9.28. No wonder I've felt so ill recently.

    Thank you for your kind words. I've felt so alone in this. It's been awful.

    Julie x

  • I can totally sympathise. I did feel guilty for putting my feet up when the kids were at school but now I think, if that's what I need to do to feel well and function then that's what I'll do. You're no use to your kids when they come home if you are tired, tearful etc.. I don't know how old your children are but you could try and think of different ways of spending quality time them too that isn't so draining..have movie and popcorn evening, indoor picnics, gaming afternoon etc.. Offer them pocket money or a treat in exchange for doing little jobs for you!

    I have also worried about not getting enough exercise but if you force yourself you will make yourself even more ill. I work as a nanny and have even put the little one to bed at work and had a nap myself on the sofa..not ideal but you do what you have to do!! And lets face it..the housework isn't going anywhere is it?? Concentrate on getting well and console yourself with the thought that this time next year you can have a massive spring clean of your house to make up for it ;-) xxx

  • Just another tip..keep a diary and track your progress. Note how you feel, when you have dose increases, when you start taking a new supplement etc... Gp visits and what they say, test results and basically anything thyroid related.

  • Great advice. I shall. I've started a journal so I shall add this to my daily writing for for sure.

    Thank you 😊

  • Thank you.

    My children are 13, 12 and 10. They're amazing and do some jobs and I do give them pocket money. My husband vacumns the house every other day to save my energy as that is way too hard for me with our heavy hoover lol! I do the cooking from scratch (I'm a health freak lol) so I do alot of cooking which is tiring some days. I do all the washing and folding clothes. Polishing and general tidying. I've also lots of pets so the kids help feed them and walk them with their dad at night.

    We love movie nights or days during half term.

    Wow you've worked through this? I take my hat off to you it's incredibly hard for me to just function and be a mum let alone working.

    It's all made me very anxious and spending so much time at home I've even become a little agoraphobic. It's been hard being so ill and afraid of what was wrong with me feeling so ill. My gp said you don't get anxious with hypothyroidism but I disagree.

    You're right. My husband always says your body is telling you to listen to it so do that. You're no use to anyone flogging yourself cleaning all day and then I'll for the next few days bed bound.

    Thanks again.

    Julie x

  • Haha, you sound very similiar to me! I have a 9 and 13 year old, 2 dogs, 1 cat, lizard and a tortoise :-D I also cook from scratch and that side of things was very hard. We ate a lot of baked potatoes and simple stuff like omelettes. I'm just starting to get back into making stews and curries etc.. I was quite lucky regarding work. I do 2 jobs, one nannying 1 1/2 days and the other is a carer for a disabled boy whose Mum also has hypothyroidism. I would get to her house in a morning and we would both kind of grunt at each other and compare our ailments that morning :-D On the odd occasion I really couldn't drag myself off the sofa she was very understanding as she has also had to have time off work.

    I think becoming anxious about your health is perfectly normal..it is a worry. I was diagnosed with hypothyroidism because I thought I had Ovarian cancer, I had all the symptoms! I spent weeks stressing I was going to die and then again recently when I was sent for a scan on my throat due to enlarged lymph nodes when I scared myself stupid reading Dr Google and thinking I had lymphatic cancer.

    Hypothyroidism also causes you to become withdrawn so again that's normal. I'm sure once you are treated these feelings will start to decrease.

    Anyway, speaking of work..I'd better get some done :-D Take care x

  • Thank you.

    Yes i am trying to do some easy meals on the bad crash days where I feel very ill.

    I do feel very withdrawn because all I have done for 6 months is spend alot of time at home and rest. I take the children to school then rest up or potter around the house on a good day doing some housework, I will do yoga in the garden on a nice day if I have the energy. I do baking and listen to music so I do keep myself busy on a good day.

    The anxiety I had before after my brother attacked me I became highly anxious in 2013 which led to agoraphobia all of that year. I was 80% over it all then I became il last year and I think when you feel weak, drained, faint, hot, dry mouth and extreme fatigue you really do feel frightened going out with your children or by yourself as you are scared of passing out in public, but it comes from actual ill health. So then my agoraphobia I think saw a back door to sneak back in through. Now my anxiety daily is about what if I needed to go to hospital, how would i cope, would i be highly anxious and they'd section me thinking I was a complete anxious mess lol! How would I cope away from home. All of this has just come from being stuck at home withdrawn from the world and not seeing anyone other than my husband and children. We do days out to the beach on my better days though as I do anything for my children to make them happy :-)

    Thank you for your kind replies to me.

    Julie

  • Hello again, do rest when you can, it's good for your husband and children too. Have you read Candice Pert's book 'Molecules of Emotion'? It would seem that when we are quite still and not thinking that our body and brain can communicate with each other and the brain then knows what needs healing. Maybe why meditation seems healing.

  • Really hoping all goes well for you on the Levothyroxine. My TSH was really high, and my GP kept telling me everything was fine, when it really wasn't. I eventually paid to see an endocrinologist privately, and he put me on Levo. I was so relieved, and began to feel better right away. My GP wasn't happy, and told me all kinds of scare stories about how bad I'd be feeling. Well, I didn't feel bad, just better. So don't worry, I'm sure you'll be fine.

  • Was your tsh as high as mine when you got treated if you don't mind me asking?

    I'm glad to hear you felt well. I'm so anxious about starting the thyroxine. I'm terrible taking new Meds. I fear reactions so it won't be easy for me starting it.

    Thank you.

    Julie

  • My endo only told me that the TSH was very high, and literally "flogging" the thyroid to try and force it into working. I'd been scared I'd fall asleep whilst driving, I'd been feeling so totally exhausted. He never told me the exact level, and I never realised how important it was to ask. I hope you will be feeling so much better once you start the thyroxine. The anxiety you are feeling is probably partly due to the low thyroid. I didn't realise how low I'd got until I began to feel well again.

    Best wishes MariLiz x

  • Thank you so much.

    Yes I can relate. I can't seem to concentrate on what my children say to me as I seem to drift off in my head like I can't concentrate. I'm that exhausted. It's a tiredness beyond tiredness and it's 24/7 isn't it. Of course it does make you feel low as you're just existing u able to live and do the things you did before. I feel I'm trapped at home and have become agoraphobic mostly because I'm just too unwell to do anything else.

    Thank you. You've given me hope.

    Julie

  • Hi Julie

    I feel very, very sorry for you, I too had this, undiagnosed when I had three children. I crashed just like you, into a black sleep like unconsciousness, there is nothing you can do about it but if you're like me you'll still have the feeling of letting others down.

    I am sure that with the support, advice and guidance of people on this site you will improve and possibly recover fully, I have improved enormously. Chemicals and towns make me worse, if you are the same you could perhaps work out of town as I do.

    You say 'even yoga' causes a cfs like crash, that is not surprising. I am a qualified yoga teacher. One of the ladies in my Beginner's class wears a calorie-user-counter and at the end of the session told us we had used 350 calories in one-and-a-half hours, 20 minutes of which was relaxing.

    If you really want to continue with your yoga, please explore the softening poses, not Yin yoga, that holding can be quite demanding if you are working against gravity, but many of the poses and moves you can do lying on your back will be okay. Some of the sitting will be good, twists for instance, easier than lying twists. Many of the standing yoga poses build stamina, that tells you they will be demanding but of course standing folding forward is relaxing and could be very helpful.

    Shoulderstands are demanding though taught in classes for people suffering from CFS, I presume the teachers have never had the condition but a good alternative is to do the pose with your feet on a chair, a good teacher will show you how, it's very safe an much easier.

    I hope that helps cos Yoga helped me through and I meditate lying on my back because if I fall asleep then that is good for my thyroid hormones so there's a good outcome whatever!

    Very best of luck with this.

  • Hi,

    Thank you for your lovely advice. I am trying to just do restorative type yoga but there are some days I have a little energy and I over do it yoga wise and crash with my energy and feel unwell again, it's not nice.

    I like to do yoga and meditation a few times a week, or daily if i am feeling up to it.

    Thank you again.

    Julie

  • I don't want to discheer you but I too loved my yoga and did it every day but it wasn't until I accepted that I could not without crashing that I started to improve. That change came about through a Chronic Fatigue Syndrome course at the local hospital, it helped enormously. Now, I am back teaching yoga 7 times a week, but it wasn't until I had a break that I improved.

    There is a breathing ratio that has been shown in research trials to help with PTSD and Anxiety (and GABA levels and PMS if I remember correctly). It's probably given on Heather Mason's website or Yoga Biomedical Trust's. From memory it's 5 breaths per minute, which would be a metronome set at 60 bpm breathing in for 6 and out for 6.

    You're doing well, being a wife and mother, and if you do take care of yourself you are teaching your children how to do the same for themselves.

    Best of luck on your journey back to better health.

  • Thank you for your lovely reply.

    I'm doing my best and have carried on being a mother and wife throughout this.

    I appreciate your replies.

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