Sorry me again

Sorry to post again. I posted 3 weeks ago saying I was feeling really rough. I have been through so much stress recently with my son ill with anxiety and panic attacks and daughter taken into hospital and now she's poorly again. It's drained me. 4 weeks ago whilst my daughter was ill I felt the ground moving beneath me..I had a few days of it and carried on but suddenly it became constant and it triggered panic. To the point I was bed ridden for a week. My husband called our gp who came to see me. I was terrified I had a brain tumour or something. I felt weak in my legs and like the ground beneath was moving as I walked. I feel I'm just off a trampoline and you feel you're still bouncing and unsteady. It's horrible. My gp checked me over thoroughly and said Julie this is anxiety and extreme stress. Our son has been having panic attacks daily, terrified to go to school, told us he's suicidal and our gp referred him to camhis who refused to help him. After a month of me battling they agreed I wasn't the best person to help him like they initially said just because I have an anxiety disorder doesn't mean I can give him therapy grrrr!

My gp said all of that streas had a huge affect on me and I needed rest. The week after things improved and I felt much better. Dizziness there but much better. Last eek it creepy back in and my fear returned. Today I feel awful. Weak all over, I go heavy in my limbs and heavy in my throat and I feel when I walk like I will collapse. It terrifies me. I also feel cold which could be my anxiety I know.

I'm seeing my gp again tomorrow. He will again do a house call..I hope. I feel such an idiot but all this has flared up my anxiety so much and as a result of feeling so unsteady I am struggling to go out. My agoraphobia I had a few years ago is in full force but all because I feel the ground is moving so much.

I'm scared. My anxiety is crippling me since this started. I cry I will have an awful Christmas. I'm terrified I will collapse. I am upset I'm not taking my kids out doing Christmas things and I feel I am a let down. I keep crying.

My tsh was tested in 2013 and was 4.2 and free T4 10.6. Told all was normal. I was tested end of August this year and tsh was 5.35 and T4 11. Again told I am fine.

I just feel scared stiff. I have had anxiety many years but I've never felt like this. I'm terrified I will collapse and end up in hospital which is my biggest fear. My husband said julie you improved for a week and barely noticed the dizziness now it's back because our daughter is ill again and you're worried. I have been extremely stressed in the last couple of months but I haven't ever felt this bad before with anxiety. I guess it did improve but this weekend I've felt so ill again. I feel woozy like I'm moving side to side just sat down which is new. I randomly go heavy all over and throat goes heavy and I feel I will fall through the floor. Feel the floor is moving as I walk. I feel awful. I had improved so I'm not sure why I feel this bad again. Can my thyroid be doing this? I'm so scared it's a brain tumour or something but my gp said my eyes are fine. My BP is normal. Balance tests fine..no muscle weakness, ears fine....

I will speak to my gp tomorrow but what can I say? Can anyone relate? I keep feeling really cold in my feet. My body feels cold but my hands are warm.

Sorry to post again. I just feel very scared feeling like this and like I'm losing my life I'm so upset i can't get out or shop. Worried my Christmas will be awful 😒😒😒😒 I had the worst few years after i had my family turn on me after my brother turned violent and attacked my husband. I developed an anxiety disorder and since I've had a few tough years but it had got so much better and life was good again but the last few months have been he'll with my son struggling after being bullied, my daughter ill alot, my husband having issues in work, myself feeling poorly on and off then my panic an anxiety returning full on.

Julie.

67 Replies

oldest β€’ newest
  • Jingyd35, Do you have the ranges for TSH and FT4? TSH 5.35 is high, and I think FT4 11 is low, possibly below range. These could cause, or exacerbate existing anxiety. Most GPs will prescribe Levothyroxine when TSH is over range which is often between 4.5-6.0. If FT4 is below range Levothyroxine should be prescribed even though TSH is within range.

    You may need another thyroid test. It should be done early in the morning when TSH is highest, and fast (water only), as TSH drops post-prandially.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi

    Lab range for tsh here is 0.35-5.5

    Free T4 7.0-17

  • Julie, your TSH is within range but is close to top of range. FT4 is low, but within range. It is worth asking your GP for a 3 month trial of Levothyroxine to see whether symptoms improve.

    __________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I've tried 3 GPS and all have said thyroid isn't treated until near 10 in our area

  • Julie, It's not necesssary to wait until a patient is overtly hypothyroid with TSH >10. Most NHS GPs treat subclinical hypothyroidism when patients exhibit symptoms when TSH is over range, >5.5 in your case. I suggest you check other GP surgeries in your area to see whether they will commence treatment.

    ___________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • You might have to diagnose yourself. This is what one doctor wrote who was trained as a medical student of the clinical symptoms and there were no blood tests at the time. Our doctors don't appear to know that our health can be badly affected if we need hormones which are necessary to run the whole of our system. We cannot function otherwise.

    worldthyroidregister.com/Go...

    Unfortunaely Dr Skinner died of a stroke which many of us believe was caused by him being hounded by the GMC.

  • Hi Julie, I am Tracey and I am not a doctor. I have Hastimoto's disease (an under active thyroid) Myself, Mum, Dad and Daughter all got the same symptoms as you and were all told stress go on tablets for depression except my daughter because by the time she was Ill, quite bad I told the doctors what to look for as 3 of us at the same time no coincidence.

    I think we might all of had a virus and our bodies thought it was our thyroid so then attacked it. We were all told borderline come back in 3 months! a week later I was falling over at work and the supermarket legs just caving in. I called the doc thought I had a brain tumor so scared and crying a lot.

    The doctor said we could test for Thyroid anti bodies. If you have these you could go on thyroxine as your thyroid is sick and you will eventually go Hypo thyroid.

    Ask for the test for Anti bodies you could be on thyroxine in a week. If your doctor refuses insist on seeing an Endocrinologist a specialist doctor who deals with thyroids and other hormone production.

    I did even when I went on to thyroxine as I thought I had thyroid cancer thank fully I did not but he kept me on the books because i was very ill for a long time. I now take high dose of thyroxine 150mcg daily and T3 20mcg 3 times a day. only now do I feel human again and sometimes still have Hashi flare ups ( this is because I have nodules on my thyroid glands and it is diseased).

    My mum and dad on low doses of thyroxine and still not got there life back recently they thought my mum had a stroke but they have proven not so they just increased her dose two months ago I can tell it is not enough she slurs her words and legs gone to pot after being well and in 70@s she was last year line dancing 3 times a week two hours none stop now she can't go out alone because she will fall. It is a bloody shamble how this is so misunderstood. Ask for optimal levels of T4 and tsh as if you are so ill normal for you is no good!!!! if you have all the symptoms and it is definitely nothing else you have an under-active thyroid clinical or not you need treatment and get your whole family checked this week!!!!! Three years of my life and 4 family member ill. I feel like screaming at all gps don't tell me normal you are not living with this!!!! Good luck to you all xx

  • Thank you. So sorry to hear your family were all ill.

    My son is 11, he's gaining weight very fast. He has depression and panic attacks and in the last week also has the same floor moving feeling. I assumed maybe a virus but I've been like this a month.

    It's nothing like me..I've had anxiety but never felt like this with it. My anxiety and agoraphobia is awful right now because of my ill health.

    I'm just told it's streets and anxiety.

    My mum has hypothyroidism as does my auntie and great aunt. My nan had hyperthyroidism.

    I shall ask them to test for hashi but I bet I get told no. They also would refuse to test my son saying no need to. I've asked before if he needs bloods as he went through puberty at a young age. He gains weight super fast and I know he's had a rough time since eyeing bullied but that's behind him..he battles low mood and panic attacks. He feels low for no real reason which upsets him.

    Thank you for your reply.

  • you will have to order your own tests and meds then, many of us here have to ..

  • Exactly the same my daughter is 11 and was going through early puberty thyroid can cause this!! insist please insist and you are entittled to see a specialist complain about your doc to authorities. my daughter puberty stopped and is a lot better now she is on thyroxine. He needs to see a special doctor. sorry rushing to work.

  • trace..did you know Hashimotos can cause gait and balance issues? You all need to look at a way to put the hashis into remission thru functional medicine and healing the immune system.

  • GET RID OF ANY DOCTOR WHO TELLS YOU YOUR TSH AND FREE T4 IS FINE

    ITS DEFINITELY NOT

    Order NDT online and self treat while you find a GP who bothers to understand Thyroid

  • I've tried 3 GPS and all said they can't treat at my levels. Tsh has to be over 10. So evenow going private won't help I guess.

  • Only if you have no thyroid antibodies

    Have you had them checked ?

    Your gps are so utterly wrong and ignorant

    Where in the country do you live

  • I've only had tsh and t4. No antibodies.

    My mum is hypothyroidism. So is my auntie and grans sister. My nan was hyperthyroidism.

    I'm in North Wales.

  • Your GP is required to do thyroid antibodies especially with a family history like that which must be auto immune

    Your son and daughter may well also have auto immune illness or thyroid

  • Right tomorrow I shall ask. So if my mum has hypothyroidism, my auntie and great auntie on dad's side and then my mum's mum as hyper is it likely to be auto immune?

    I've had low ferritin for over 10 years maybe all my life. It's only 15 but has been as low as 8. My b12 was only 212 at my last test and I was told it's fine but lab did say treat of showing symptoms. I supplement it myself now.

    Thank you for your help. As much as I hate bloods I'm going to ask. I just can't go out feeling like this but not sure if a gp can take blood at a home visit? My anxiety is awful due to this weakness and dizziness so it's flared my agoraphobia up again 😯

  • Low ferritin or b12 or folate and high cholesterol is so totally indicative of hypothyroid along with near scurvy and beri beri and other vitamin deficiencies

    You have the genetic risk from both sides of your familiy and that means your kids likely have a double risk

    My husband had Graves and Hashis ,his nephew has hashimotos

    My Mother was unrecognised coeliac

    Our younger daughter and 3 of her 4 kids are all hashimotos her husband is now hypothyroid as is his mother

    Other daughter has a coeliac child

    The inheritance factor is paramount and frightening and cannot be ignored

    Your GPs must get up to date as any TSH near 5 with thyroid antibofies must be treated

    Insist that along with thyroid antibodies

    Ferritin

    Folate

    B12

    Vit d3

    Cholesterol

    Are all tested

  • Ok I hope he will agree and do them at my house because right now I cannot come to the surgery feeling this bad and anxious 😯

    My gp suspected hypothyroidism in the summer so range the tests and he said I had symptoms of low vitamin d but said he couldn't test vitamin d he had to do a bone profile first which came back normal?

    I'm never anaemic but my ferretin has always been very low with no known cause.

    I'm suspected wheat intolerant as I cannot eat wheat without bloating and having an ibs flare up. I've had coeliac test via blood and told negative but my gp thinks I react badly to wheat.

    My mum struggles eating bread and she is hypothyroidism. She also has low ferritin and high cholesterol. My cholesterol was tested 2 years ago and was 5.8 I think. I was told it was satisfactory.

  • Wheat intolerance and gluten intolerance stops the absorption of vitamins just same as low stomach acid which also occurs in hypothyroid

    Low ferritin is aneamia because its stored iron and its vital

    Without

    Ferritin

    Folate

    B12

    Vit d3

    All being at least halfway in their ranges your body will not even be able to convert levothyroxine into the t3 your cells all need to function

    You will really need liothyronine or NDT meanwhile

  • My ferritin has always been low. In August it was 15 (15-300) and b12 212 (150-900).

    My folate was fine.

    Thanks for your help.

    Julie

  • Low ferritin goes with hypothyroid it should not be that low

  • They thought it was period related as they were heavy so I went on the pill but my ferritin is still very low. It did go up to 49 years ago on iron but it made me ill so I had to stop taking it. I now supplement it myself using gentle iron. It's dropped drastically since stopping tablets.

  • Heavy periods are related to low thyroid! You really have to stop being so dependent and reliant on your doctor and take the health of yourself and your son, into your own hands. Do you have any idea, how many of us have been kept ill, made ill and could have died, at the hands of our doctors?

    You will need to take every bit of strength you have and research. Get your husband to help, if necessary.

    This is a huge problem, this thyroid thing and they really don't know what they are doing!

    You really sound as though you have Hashi's.

  • I had very heavy periods all my adult life. In 2012 they got so heavy I felt poorly so I agreed to try the pill which has lightened them alot.

    My anxiety is ridiculous and I am told I have a disorder. Ok I have always had anxiety and 3 years ago it did become severe due to a horrible time with my extended family being violent but this year it's been really bad but physical anxiety now and I just can't get to a good patch again which isn't like me. It flared up.again this summer when I suddenly had crippling fatigue which prompted my gp to run some blood tests for thyroid. Since then my anxiety has never calmed but he tells me hypothyroidism doesn't cause anxiety only depression.

    I am going to ask today if he can do some blood tests but I bet he says he can come out to my house to.do themy. My anxiety is crippling right now as is this unsteady feeling I just can't come to the clinic. I last had a blood test in September and I had a huge panic attack and haven't been back since. I felt an idiot.

    I feel I can't do much. I've tried 3 GPS and none agree it's my thyroid ano its just my health anxiety running rife but I am not worried about everything or checking my body. I had health anxiety 10 years ago and it wasn't anything like this. Yes I'm terrified why I'm so weak and dizzy but who wouldn't be 😒

    Thank you for your reply.

    Ju

  • My gp is coming to see me and taking blood. He won't test for hashimotos despite me asking as he said my tsh has to be out of range before they'll test for antibodies.

  • Your TSH is out of range

    refusing to test for Antibodies with your family history is wrong

    Just how ill does he want you to be or would he prefer you dead its that simple

    you need to complain to whoever is dictating such nonsense

  • But the range here is 0.35-5.5 and my tsh is 5.35.

  • the range is WRONG and you are only 0.13 off it any sensible doctor will know that

    I still say how ill or dead do they want you

  • Well hopefully I won't die lol. Let's see what these results show. I hopefully will get them back tomorrow or Wednesday.

  • Wheat allergy and sensitivity can actually be the cause Hashi's. and once stopped, some people go into remission.

  • Being upset , will flare up autoimmune disease like hashimoto! I have been living thru it myself. I am losing either 1/2 of my income or my health insurance, on Jan. 1st, my son and i are both ill. My daughter has moved out and in with a man of another color, who she only dated for 2 months. My cat Buddy died in July, Oscar, last Christmas. My refrigerator is out for the pat 5 weeks and washing machine too. I have no hope of having a good Christmas either. I have been really ill for the past year and a half, due to extreme stress. Dizzy, swelling, vision blurred..all of it and the doctors look at me like i'm crazy!

  • Oh that sounds terrible you poor thing.

    My stress has been through the roof the last 4 months. My son had crippling panic attacks and told us he's suicidal, forcing him to school daily and camhs refusing to help him. Fatigue daily, my daughter in hospital twice unwell, panic attack at the doctors in September flared up my agoraphobia again, dizziness, 2 home appliances broke, my son had his bike stollen....honestly everyone around us says your family need a break. Before this dizziness started I had a 4 weeks battle with the children's mental.health services to help my poor son. Even my gp said camhs treated us terribly and I've not felt well since.

    Stress is horrible.

  • i am so sorry to not get back to you sooner!

    . Pull your son out of school if you can. Do homeschooling, if that is allowed where you are...even if the schooling has to stop for awhile, at least your son will have time to relax and you too, because you will not have to deal with school or child services! This is what i did.

    I would treat yourself as tho you have Hashimotos. I subscribed to Dr. Isabella Wentz emails. She put her hashimotos in remission. Her advise will work on all autoimmune disease. The bottom line is it is about poor immune system health, which is about gut health and food sensitivities and food allergies. People with autoimmune disease have food issues. This is where i am now, doing a gut healing protocol.

  • You cannot just be complacent, you must get both you and your son tested. I am paying out of pocket to help myself and my son..even pulled him out of school..his health is more important.

  • With hypo you can get these symptoms too. Considering your TSH is relatively high look at the link below and give a copy of this to your GP and ask can he please give you a Full Thyroid Function Test and that Thyroiduk.org are NHS Choices for information.

    In many countries we would be prescribed if TSH is around 3. I would get your son to have a Full Thyroid Function Test as well. The UK guidelines for the TSH are the highest in the world at 10 and thousands remain undiagnosed/untreated.

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

    Tick the symptoms you have below and give a copy of this to your GP as anxiety is amongst the myriad of clinical symptom. Your TSH is high with symptoms. Unfortunately it seems the GPs might be the least informed about how to diagnose or taking clinical symptoms into account. Ask also for antibodies to be checked.

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

    This is re hyperthyroidism - just in case your son also has problem:

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

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

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • Thank you so much. Lots of great information.

    The list of symptoms I tick at least half, possibly 2/3. My symptoms of being off balance, dizzy... fit in perfectly to how I feel recently.

    Thank you.

  • I would suggest you print out the links I gave earlier, plus these and post them so that your GP has time to read and discuss with his fellow doctors first and make an appointment to see him after he's read.

    We, through absolute necessity, have to be more knowledgeable than those who think a dot on a piece of paper is the diagnosis instead of listening to the patient. The following links have been sent to the British Thyroid Association and the Royal College of Physicians.

    thyroiduk.org.uk/tuk/campai...

    thyroiduk.org.uk/tuk/thyroi...

    He wouldn't have time to read during your appointment.

  • Thank you.

    My mum is hypothyroidism as is my mum's sister and my grans sister. My nan was hyperthyroidism. I guess that increases my risk of hashis.

  • If you have thyroid antibodies you would have hashimotos. I am surprised the doctors haven't taken any family history.

    It's ridiculous the situation in the UK, when people can remain undiagnosed/undertreated/untreated.

  • So will a gp check antibodies? If it Stisted does that prove I have hashimotos?

    I know. It's terrible they leave people to struggle and in my case just blaming my anxiety causing how ill I feel. I don't believe it because I know own myself. I've never felt so unsteady it's like when you get off a trampoline and you feel very heavy and like the ground is moving under your feet. It's awful.

  • Sorry for typos it's my new phone. So annoying . I meant if the test is positive....

  • Doctors are ignorant, mainly, about our symptoms or how affected we are by them.

    People can have hypothyroidism without antibodies but you must have antibodies to have hashi's and then you eventually become hypo as the antibodies attack our thyroid gland and sometimes we have too much and we feel hyper and at other times too low.

    The symptoms can be very disabling as we really don't know what's wrong with us particularly if the doctors brush us off as 'anxious', depressed or any other diagnosis except which may be the right one.

  • I agree.

    Is it likely I could have hashis if it's alot of my mum's side and auntie on dad's side need thyroid issues? I have no idea if they have hashis.

    I just know this doesn't feel like anxiety. I do feel anxious but about how off balance and weak i feel. It's terrifying and it's had ano awful effect on my anxiety.

  • It doesn't really matter if we have hypothyroidism or hashimotos - we are treated the same way by taking levothyroxine.

  • We know they are treated same way but without thyroid antibodies they refuse to treat till TSH gets to 10

  • But if u have hashis surely my gp won't wait until my tsh hits 10 to treat me?

  • It's all down to how much your GP understands about the thyroid gland and for many it is less than you and I know. Some might treat you and others may not until TSH is 10.

  • Gosh I can't add anything to all the comments above but I really feel for you and your poor son. Is he being or has he been bullied at school? That can have an enormous affect in the lives of young people - my younger son was bullied terribly more than once.

    I hope when you print off and send the information given above to your doctor in advance of his visit he will be prepared to give you a trial of thyroxine. Tell your doctor you have to get yourself well for the sake of your family.

    If it's any help, I've stopped trying to get blood tests from my surgery and use Blue Horzons home finger prick blood tests, their Thyroid 10 is easy to do and covers all the tests mentioned above plus antibodies - that test doesn't do vitamin D - I have that tested by City Assays ( you will find contact details for both of these labs (and others) on the Thyroid UK website.

    The whole ordering process is very quick, you get everything you need to do the tests in the comfort of your own home, then you post everything back to the lab and get the results sent to you online in a couple of days. You could even test your son if you suspect he has thyroid problems too.

    If your doctor and other agencies can't help your son have you researched mental health charities for young people in your area - surely there is something like that available? I hope you can find a solution, you all deserve better than this.

  • Thank you for your reply.

    Our son was bullied all through year 6 in primary school. He started high school september and the bullying stopped but it's affected him alot and he is so low, tells us he hates himself, hates how he looks, low self esteem, panic attacks in school so he misses alot of lessons. I feel very stressed out with it all and have felt ill battling with CAMHS to get them to help. They assessed him after our GP referred him to them and they said he had anxiety and that I was the best person to help him as I have suffered myself??? utter madness because I was already under stress coping seeing my child so upset, having to leave him in school every morning having a panic attack and then going home crying that I had left him there like that. It has destroyed me.

    My GP will be coming today I hope, I am going to ask if he will take some blood so I can get some idea of what's going on and put my mind at rest. I feel so ill, weak, fatigued, weak legs and floor moving feeling. I feel awful and it's hit out of nowhere. The fatigue had improved a little and then I started with this dizziness. It's terrified me and my anxiety isn't good at all. I hope my GP will agree to do some blood tests today at my house because I can't bring myself to go there at the moment. I am not able to go out with this dizziness. :-( I worry Christmas is going to pass me by, I can't enjoy the build up at all feeling so worried and dizzy.

    Julie

  • I think it is very unfair to expect you to support your son 'because you know how he feels'. I'm not medically qualified but I would say that while you can be very supportive because you have an idea of how feels, you are really too close to him to be able to step back and give him the help he really needs, besides if he is talking suicide then that just isn't good enough - he needs professional help.

    Have you thought of contacting the charity MIND? They might be able to help you get the support you need for your son - or the CAB?

    In the meantime fingers crossed that you can have your blood tests done today - if not perhaps one of the district nurses could do it. They must do that sort of thing for housebound patients. You want your ferritin, folates, B12 and vitamin D well up in their ranges to help your thyroid and to feel at your best.

    As for Christmas - I lay in bed this morning and wondered if anyone would notice if I didn't put out the usual Christmas decorations, there's a live tree in a pot outside waiting to come in and I'm wondering if I could get away with a minimalist look with just fairy lights - skip the baubles etc. We'll only have one very grown up kid here over Christmas, no grandchildren or anything like that to make an effort for.

    Ask your kids what they want then delegate the Christmas jobs and let them decorate the house etc. They might not do it how exactly as you'd like it but they'll have a great time - when it's done, just smile and tell them it's great - my younger son used to go for as much tinsel and bling as possible then a little bit more just to make sure. Now they're grown up and gone we miss those days. Good luck with the GP.

  • Thank you so much.

    Luckily we decorated the house already. The kids were great helping out.

    Thankfully camhs after a months battle have agreed to help but we have to wait now on a waiting list. It's all made me feel very ill.

    My gp is coming today, he rang not long ago. Heavy refuses to test for antibodies as I'm within range with my tsh and t4. He's doing an fbc, ferritin, thyroid and cholesterol as it's overdue.

    Thank you. I'm very nervous what he will say today. I've felt weak and unsteady for 3 weeks now 😒

  • If only we were closer - you could send the little cherubs round to decorate my house for me :)

    That's good news for the camhs, at least you have got that far. I can imagine you must feel distraught about your poor boy.

    My younger son was bullied three times in his early life, first time by a teacher! I moved him to any village school where he was bullied by a dreadful woman who was a leading 'Friend' of the school and by her two sad, miserable little kids, every photo I have of him from then had one of her kids sitting in either side of him, he was a very happy go lucky child and I suspect our home was much more attractive to them than there was. I used to. Nickname the mother 'evil Edna', third time was in secondary school and again it was by a boy who had a miserable home life - I knew if the mother through friends, they were very well off but she was very hard on him and his sister. I was distraught about it all, I remember leaving him in tears at his school, gettg into work in tears myself, unable to even speak, my boss just said my sons name, I nodded and she got on the phone to his headteacher who got it all sorted out. In our case it was true that the kids bullying were all unhappy kids. I have to say that really didn't matter when it was my son who was suffering so badly. My son wasn't into football and all that sort of stuff, he was musical and eventually found refuge and a group of good friends in the school music department.

    I've heard it said that 'a mother is only as happy as her unhappiest child' and that is so true.

    Have you ever been tested for antibodies - how does your GP know you haven't got them? I had Graves Disease and although I'm in remission and my TSH and T4 are within range I've still got antibodies. I went totally GF in September and I've managed to reduce them quite a bit already. I'm just curious to know how he knows you haven't got them if he hadn't tested for them. Hopefully the tests he is planning on doing reveal something that will help you and maybe you can stress the family history of thyroid problems and ask fir a trial of Levo. Good luck.

  • Oh your poor son. What an evil mother and her children. You sound a wonderful mother and your son a lovely boy. It always happens to the nice people.

    He doesn't know that I don't have antibodies he just said he can't test for hashimotos until my tsh is out of range? I told him my mothers side all have thyroid issues. He's agreed to test my tsh and t4 again but he doesnt think in 3 months there will be much change.

  • So sorry to hear what you are going through! From personal experience (both myself and friends), as soon as you exhibit emotional/mental symptoms; it blinds the average gp to anything physical. I've learnt over the years to suppress the tears in my doctor's surgery because it's counterproductive towards being taken seriously (despite it being an obvious sign that something is wrong :( ).

    It's so frustrating that modern medicine can't see the body and mind as one. Until recently I've spent years being prescribed antidepressants for fatigue and pain... a treatment that's about as useful as a chocolate teapot in the circumstances.

    I'm now being treated with Levothroxine for autoimmune thyroiditis due to testing positive for antibodies, yet my my tsh and T4 are nowhere near as bad as yours!

    Please demand the appropriate blood tests - if not, insist on a referral to an endocrinologist. It's criminal that you have been left to suffer in the face of such obvious symptoms.

    Good luck.

  • Thank you.

    My gp is coming to see me and I asked for a test for hashimotos and he said I didn't need it as my t4 and tsh are within range and the NHS won't test it unless out of range on a tsh. Despite me saying my mum and auntie have hypothyroidism.

    I feel at a loss and scared what he will say when he comes to visit me.

  • Never apologise for asking help! These forums are for people us. We support each other and offer help and advice :)

  • Thank you Justina 😊

  • Thank you all.

    My gp came ou to see me, he did all the same tests as 3 weeks ago if not a few more. Bp sitting and bp standing. Big fine. Oh he didn't look in my eyes just realised. He did finger touching nose test. Stood me up and watched me walk. Ran fingers down arms and legs. Rubbed keys twice under my feet. I had to squeeze fingers, push hands, push legs against him. Oxygen was 99.1% was 100% last time. He did knee reflexes and both reacted. He said nothing serious he said both ears fine but he's putting me stemitel is it? To see if it helps incase it's inner ear. He said it should settle on its own though and he thinks it's still been from stress but possibly ear but no signs of it.

    So he tried to put my mind at ease about anything serious calling my off balance issues.

    He ran bloods. Thyroid, fbc ferritin and cholesterol. He said he cannot test for hashimotos until I'm out of range and if it is out of range he will. He doesn't think in 3 months my tsh will have moved much from 5.35. Could it have changed?

    He didn't say much on the thyroid he just said at 5.35 he didn't think I would be ill but he's running tests to check and go from there. My husband has said we might go private to test if I get no joy after these results.

    Just thought if update you all.

    Thank you for your continued support.

    Julie

  • Testing private can cost some but it only hurts once. But at least you would know!

    Tsh can fluctuate especially if it is hashimotos. So it can be low as well but that is why antibodies should be tested. That explains fluctuations.

    Sounds like a typical doctor : I dont think You could feel ill :D

    I hope they start to take you seriously.

  • Yes watch it be low tomorrow when I get the results haha! Be just my luck πŸ˜‰

  • Make a new posting about your results tomorrow !!

    I totally forgot you live in Europe so like musicmonkey says your TSH has been taken wrong time :(

    How about the blue horizon finger prick test you can do at home? Would that be option for you?

  • I thought that after he took it.

    In the new year I might go private but I do worry about doing finger prick tests. Do you need alot of blood? I'm useless with finger prick tests lol.

    I will post a new post tomorrow with my results.

    Thank you

    Julie

  • I've used the fingerpick test loads of yes. It's really good now, as well as all the up thyroid tests you get ferrit, folates, B12 and antibodies.

    You order either by phone or online, they send you a kit that comes with full instructions, everything need is in the pack. You get a tiny little test tube for the blood, some lancets to get the blood out.

    Basically you do the test early the morning, you wash your hands in warm / hot water for four minutes, you put a rubber band round the finger you decide to use, use the sterile wipe etc then put the lancet on your finger, press it and the needle shoots out into your finger and then a dot of blood appears.

    You just catch the blood in the test tube, when it's full check yu have completed the firms, pop everything back in the plastic envelope and pop it in a post box.

    I always post mine early in the week so that it doesn't end up sitting in a post box over the weekend. The results and any comments on them arrive in your email inbox a few days later. It's very easy and well worth the money - I started use them because I could never get anyone to test my T3 - yet they were talking about giving me radioactive iodine should my block and replace therapy not work! It seemed ridiculous to do that without ever having tested my T3.

    BH now do ferritin, folates and B12 which are an added bonus.

  • Jingyd35 - if your GP came and took blood in the evening, your TSH will be lower than it would be in the morning, following a fasting period overnight. This may not help your case for thyroid treatment.

    As many have said before, is it at all possible you can get the necessary blood tests privately? Or see another GP?

    I was put on a lower dose of Levo from last summer up to April this year and kept getting Labrynthitis (an inner ear problem that causes dizziness). Since I slightly increased my dose I have not had one episode of this (many other problems sure, but not that).

    It is so unfair that you are being treated in this way and so much on your plate.

    Just an idea for your son - is he able to access counselling at school while he is waiting for CAHMS?

    Best of luck to you.

  • Thank you. Yes I also realised this after he took it. Blood was taken around 12.45pm today.

    Hopefully the result will be OK but I realise it won't be accurate.

    I've spoken to 3 GPS and none will budge.

    I'm not having the room spinning symptom but he said it could still be an inner ear issue. I've had this 3 weeks now maybe a little longer be daily for 3 weeks.

    Thank you.

    Julie

  • Forgot to say. He is having some support in school while on the waiting list at camhs 😊

You may also like...