Been to my GP yet again

I don't think i can take a lot more!

why will knowbody help me!!!?? i cannot afford to go Private !!

here are my results from March

s371.photobucket.com/user/B...

having joined a Gym and going 3 - 4 times a week

20 Minutes Cardio each time and 45 minutes of heavy weights

thought that might help me, but i still feel the same

i`m not losing weight, i don't stuff my face with junk or eat too much

i don't drink alcohol, if i do its Rare

i weigh 94kg and i`m 6 foot 3

i feel tired

get headaches a fair bit

feeling cold when other people are hot (more so than below)

feeling hot when other people are cold

irregular temperature control

i feel depressed, if not suicidal sometimes

difficulty in losing weight

keep getting colds and flu, more than i ever did

not sleeping properly

i feel Angry all the time

tummy trouble, feeling bloated a lot

feeling unsociable and wanting to be on my own a lot

Generally feel like crap and like i`m living in a bubble

i have tried every kind of anti depressant, but they dont make me feel any better

they just make me sweat, gain even more weight etc etc

read my previous blogs and questions for my insight on my probs

dont know which way to turn anymore

saw a different GP this morning and he says to raise my 50mg of Thyroxine to 100mg for 6 weeks and then have a blood test, thoughts??

all these GP`s keep saying is my TSH is Normal

WHAT THE HELL DOES THAT MEAN??

35 Replies

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  • Hi, It means nothing in my book. Symptoms, symptoms, symptoms! If you STILL have symptoms there is still a problem whatever the wretched test tube says. It works for some, but for many it does not as there is clearly STILL an underlying problem.

    Have you been offered T3 or NDT? Have you had all the vitamin/mineral tests done by your GP? thyroiduk.org.uk/tuk/diagno...

    If you have exhausted all other possibilities it might be worth you looking at this site.

    survivingmold.com/diagnosis There is an online test that you can use to check the possibilities of you having this problem which may be causing your thyroid difficulties. It was only when we looked into this for my daughter earlier this year that this underlying problem was made clear.

    Jane x

  • Have you ever googled low phosphate and high triglyceride (I think that's how its spelt).

    If ever I have blood results I don't understand I always google and see what comes up.

    Moggie x

    p.s. nice car by the way.

  • Sorry I don't understand why you re-posted your results in answer to my question as this was were I got the high and low results from - both these are stared (*) by the lab which means they are out of range so I wondered if you had done any research yourself of these.

    Moggie x

  • Hi there,

    Have you thought of getting your adrenal function tested? I've been in the revolving door for some years now with doctors, but have taken some control of the situation. Yes I'm afraid it means money! Some of the symptoms are like low thyroid function, but the anger you mentioned can be caused by abnormal cortisol levels.

    Anti depressants mixed with Levo can prevent it from working properly. It can also give you horrible symptoms.

    You TSH should be 1 or below.

    50mcg is a tiny dose. Your GP should raise your meds gradually by 25mcg every 4 weeks, not suddenly go up by 50mcg!

    I haven't looked at all your results, to be honest I don't understand half of them lol!

    You should be on 10mcg for every stone you weigh as a rule of thumb.

    I just had an Adrenal Stress Profile done and my cortisol was low. I've had untreated hypo for many years though and other health problems. It helps me understand why I haven't got better yet.

    Your starting point is to get your meds raised very gradually.

    What GP's don't do which you can easily do at home is take your morning temperature before rising. If it's lower than normal there's a good chance you are still hypo.

  • what should my temperature be when i wake in the morning then?

  • Normal temp is 98.6 F or 37 C

    For instance before treatment I was in the 35's

  • Hi Wayne,

    I feel your frustration but let's put things in perspective. Today you saw a different GP and he has recommended an increase in your thyroid medication. On the face of it that's quite a positive result really. Whether you feel positive results from the increase itself is another matter.

    Your TSH of 2.65 is too high as you probably know. I do wonder if an increase of 50mcg is perhaps too much. The usual increment is 25mcg. But who knows, maybe you need the larger increase. Try it. You have nothing to lose. And report back to the doctor after your 6 weeks are up.

    Keep a diary. Note down any changes. It will help you determine whether you're making any progress. Your vitamin D status is improving according to your blood results, so that's another positive thing. This thyroid business can be a long drawn out journey and unfortunately sometimes the only thing we can do is wait. I really hope the 100mcg helps you.

  • OH MY GOD!

    i just checked back in May 2012 when i first had my TSH checked, it was this

    s371.photobucket.com/user/B...

    is my FREE T3 okay?

    and why has my TSH gone up after being on 50mg of Thyroxine?

    will i get side effects by going up to 100mg each day?

  • Often when you are on a low starting dose you feel worse. It's because this small dose of Levo can suppress your natural thyroid function, but the 50mcg dose isn't enough to replace the level of hormone you need. It took me a while to get my head around this!

  • I wish my Dr would increase my dose. My TSH last December was 0.98 and in March it went up to 2.88 and when I asked for an increase I was told it was in range. So I will have to wait until June to have another blood test.

  • They just don't get it do they? Why did your TSH go up I wonder?!

    Take the book on thyroid disorders by Anthony Toft, it's one of those little books you can get at the chemist or WH Smith for approx £3 It clearly says your TSH should be 1 or below, and that some people don't have a sense of wellbeing unless their TSH is suppressed. TSH is a load of tosh anyway, it's what your symptoms are that counts.

    I showed this book to my previous GP as it's approved by the BMA, she was quite shocked and then realised why I was still unwell and it wasn't ok the have a TSH of 3 on treatment.

    Take your morning temps before you get up. If they are below 37 you know you are still hypo. Hand them in at your next appt.

  • As Helcaster said, but also your thyroid may be gradually failing so you may find you need to keep increasing your dose.

    100mcg is still a relatively average dose but you should probably go up to 75mcg first and then 100mcg. You may find you eventually need more.

    Clearly from your TSH you are still under-replaced. As has been said before, your TSH should be below 1 and your T4 at the top of the range. If you doctor has difficulty listening to you, prehaps show him Dr Toft's book "Understanding Thyroid Disorders" where he states these facts. Your GP can't really argue with it as Dr Toft is former chair of the British Thyroid Association and the book is published in association with the BMA!

    I hope you get your increase. Keep fighting! You are clearly hypothyroid and this will explain all your symptoms.

    Also, as someone else suggests, it might be worth looking into cortisol levels (adrenal fatigue is discussed at length on many sites on the internet - worth reading).

    Carolyn x

  • Okay, so i am going to buy this book, or can i download it from anyone?

    having seen my GP and about 3 others, all saying "normal range" etc etc

    i still feel AWFUL

    if i go and see my GP again and tell him that even though he sent me to Endocrinology department to see a Dr who specializes in it, should i ask him for another follow up appointment with same Dr or do the whole lot of tests again with a different specialist at that hospital, or another hospital?

    i don't know which way to turn, as since being on Thyroxine, i have gone from 1.40 to 2.65 TSH Level

    shouldn't it be going down?

    hopefully Cortisol results might put rest to all my problems

    i just want to get better, i am 40 years old this year, play keyboards in a successful band, have a loving partner, i don't want my life wasted suffering anymore :-(

  • I know how frustrating this is, but it can get so much better.

    I think the reason your TSH is rising is because your thyroid is gradually failing. When you started treatment, your thyroid was probably still partly functioning but it has gradually slowed down further and further and even though you are taking thyroxine it isn't enough to compensate for the further slow down of your thyroid.

    Most people start experiencing symptoms long before they are outside the normal range. When they finally start treatment their thyroid function is still declining so the dose keep needing to be increased. This hasn't happened in your case so you are not getting better.

    The book is only a few quid so might be worth getting.

    You might also want to do a search for policies/protocols for various health authorities on treating hypothyroidism. There are some useful ones out there. Might be worth showing your doctor. I'll see if I can find one.

  • okay now i feel worse, my Thyroid is failing?

    how can i get it fixed? knowbody will help me

    i have seen an Endocrinologist and she says i`m fine

  • can anyone recommend a Thyroid specialist that has changed their life and knows WHY i am like this?

    please?

    i am in Oxfordshire

  • It might be a good idea to post this as a new question so that more people see it.

    Remember the NHS has the book and choose system so you can see someone in any hospital in your area.

  • When you develop hypothyroidism it doesn't just reduce output one day; it does this over a period of time (usually) getting worse and worse. It doesn't mean it will cease production entirely but it is something that will need to be treated for life.

    I certainly didn't want you to feel worse! I'm just stating that where 50mcg may have been ok initially, it isn't any more and you need an increase in dose. I eventually went up to 125mcg, which is quite typical. I don't know if my thyroid does anything any more.

    Once you get on the right treatment you will feel loads better. I'm saying this as someone who has been there.

    Somehow you need to convince your doctor to try an increase. You need your TSH below 1 and you need your symptoms to disappear. Provided you are still in range after the increase, your doctor shouldn't have a problem if you TSH is 0.5, for example as that is still in range. The evidence suggests that you are only at risk of atrial fibrillation and osteoporosis if your T3 is raised. This is rarely the case with someone on levo, even when their TSH is below range. If your doctor spouts that one, he needs to do some reading! It is a myth that an increase in levo will cause you problems.

  • Sorry, I couldn't find the guidelines I was looking for and have to go out, however I have found this paper which might be worth reading and perhaps useful to print and take to your GP. It does suggest an increase is a good idea as you still have symptoms.

    bmj.com/content/337/bmj.a80...

    I hope this helps a little. I will see if I can find anything else later.

    Carolyn x

  • these doctors make me sick!!!!!!!!!!!!!!!!!

  • Join the club! I do try and work out why they are hell bent on keeping us very ill, no answers as yet. If we were optimally treated we wouldn't be making appts or having additional prescriptions, which are both a drain on the NHS!

  • i have been told to do a 24 urine collection test and take it it to check my cortisol levels, this COULD be the missing jigsaw in the puzzle? adrenal stuff etc?

  • also, i forgot to add numbness and tingling in my fingers when laid down at night

    and i have been to my hospital and had carpal tunnel tests, i dont have it

    so, bemused as to why i have the symptoms for it, horrible it is :-(

  • stopthethyroidmadness.com/a...

    I CANNOT BELIEVE THIS LIST

    i have 90% of these symptoms for the last 20 years

    continuing hypothyroid symptoms with a high free T3

    shaky hands; shakiness

    diarrhea

    bad palps

    higher heart rate

    pounding heart

    feeling of panic

    weakness

    inability to handle stress

    inability to handle interactions with others

    inability to focus

    rage or sudden angry outbursts

    emotionally hyper sensitive

    overreacting

    highly defensive

    feeling paranoid about people or things

    exacerbated reactions to daily stress

    no patience

    easily irritated

    mild to severe hypoglycemic episodes

    nausea in the face of stress

    taking days to recover from even minor stress

    taking days to recover from a dental visit

    flu-like symptoms

    headache

    all over body ache

    super-sensitive skin

    extreme fatigue

    scalp ache

    hyper feeling

    jittery

    clumsy (drop things, bump into things)

    confusion

    suddenly feel extremely hungry

    low back pain

    dull

    cloud-filled head (happens when this patient is due for a next cortisol dose)

    jumpiness

    muscle weakness

    “air hunger”

    dizziness

    light headedness

    motion sickness

    almost passing out every time patient gets up

    dark circles under my eyes

    waking up in the middle of the night for several hours

    difficulty falling asleep

    frequent urination

    IBS symptoms

    worsening allergies

  • I'm glad I had mine tested. I did suspect my cortisol would be low. I've had unexplained diarrhoea since 1999 and I have terrible pain in my legs and feet. Also getting hungry in the middle of the night, not sleeping, and feeling drunk sweaty and weak every morning, mentally not waking up until the evening, which my results did confirm. Yes another overlooked piece of the jig saw.

    Now I just need to know how to improve their function.

    Do you over exercise, because you're worried about your weight? I read that can cause impaired function of the adrenals.

  • Wow that's all too familiar but recently I discovered I am adult adhd and Aspergers which also explains my difficulty sifting through this myriad of information and possibilities and understanding the link with relation to my excessive thyroid problems. I'm beginning to suspect fibromyalgia for me I've done the 24 hr urine thing but negative, exercise quite a bit have been put on stimulant meds for adhd the well recognised side effect being loss of appetite and weight loss yet have gained weight and am sleeping more and thinking and focusing clearer I have even followed the weta is diet from the nurse and with supervision went to 800 calls a day and still gained weight only ounces but my energy was so low I couldn't move and as sporty person used to work in sport industry Leah's very very active it just makes no sense. Now obese because until recently just gave up entirely think that's driven by depression SICK of trying so hard and getting nowhere but thanks to these sites and others's experiences I'm feeling inspired to rejoin the fight but still feel absolutely befuddled!

    I hope you find answers soon then hope I can piggy-back them lol sorry always had weird sense of humour! I feel your rage and frustration don't want to add to it!

    Take care of yourself and food luck

    Aurora

  • Good luck not food luck! X

  • Worth doing??

    better than blood test apparently

    health-energy-fitness.co.uk...

  • Whats this about? marketing rubbish? or better than Thyroxine? or can you take it with Thyroxine?

    bigvits.co.uk/product.asp?p...

  • It's a thyroid glandular. It's dessicated thyroid with the hormones removed, however some people find it helps alongside their thyroxine. I would aim to get an increase of thyroxine first though as you are clearly undermedicated.

  • ok

  • I wouldn't touch that, if I were you. It contains kelp, which has a high iodine content. Iodine should not be taken unless to have been tested and found iodine deficient. It can do more harm than good. These products are just for making money out of people fears.

    Hugs, Grey

  • I was diagnosed with hypo about 6 years ago. My weight had increased alarmingly, and I didn't understand why until I was tested. I was given 50 mcg of Thyroxine. What a joy. I lost an incredible amount of weight. Within a year, I was actually thinner than I had been in 20 years. The answer to my prayers.

    About two years later - with continuing increased dosage - the honeymoon was over. The weight started creeping back up. Like you, I began to experience anxiety, depression, withdrawal, IBS, etc. Even worse, my weight was creeping up. Up until three months ago, I didn't equate my symptoms with the Thyroxine. But 2 months ago, the doc increased by dosage to 150 mcg. I gained nearly a stone in two months. Unbelievable.

    That's when I realized it might be the Thyroxine. Of course, the doc disagrees. He implied I'm eating like a pig.

    I don't know what the solution is for you - or myself. However, I am NOT going back to Thyroxine or Synthroid. I am going to try Armour or Nature Throid or perhaps kelp or iodine supplements. I am sure not going to pay to get increasingly unhealthy. I think doctors are full of beans, and the pharmaceutical companies produce garbage that hurts us.

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