dont know whats been gong on

beginning of the week i felt awful

no energy

foggy head

feeling sick


slow pulse

pounding head

went to drs and was told it was not the levo, so i suggested adrenal fatigue and was told it was not that but cortisol blood test booked for 1st october along with TSH and FSH glucose plus anything endo wants to add

diagnosis anxiety

back to drs yesterday as was sweating, feeling sick, foggy head no energy and chest pains each side under shoulders and arms

booked to see dietitian to see if qualify for for gastric band

referred for heart scan (within 2 weeks)

dr asked about excercise and i said all i can manage is getting out of my chair and getting up the stairs to toilet, she did say something about the treadmill test but cant remember what

im so sick of being sick

im on 50mcg levo

23 Replies

  • 50mcg of Levo?? I'd say it *is* the Levo - in that you're almost certainly not taking enough of it! Do you have any recent blood test results?

  • TSH 12 back in august

    bloods due1st october

    i didnt feel this bad when my TSH was 20 back in july

  • Oh for goodness sake - your doctor needs to go back to working on guinea pigs not people.

    Ask for your FT4, FT3, thyroid antibodies, Vit B12, Vit D, iron, folate and ferritin to be tested. Insist if necessary.

    Your TSH is way too high and your dose of levo is way too low. You are on the starting dose which should have been raised after 6 weeks, until you feel better and your TSH is around 1.

    Either change doctors or take someone with you so you can stand your ground and insist on all the above tests. Write them on a piece of paper and take them with you. Don't be fobbed off by being told they can't do FT3. They can - all labs are fully equipped to do the test.

    Then order the saliva cortisol test from Genova UK

    The NHS won't test your cortisol properly - they only test for Addison's disease.

  • im only just getting a heart scan after a year of complaining so cant see me having much luck with the blood tests but can ask, i know dr is calling the idiot who calls himself an endo to see if he recommends and tests so he may even suggest these tests, (last year he diagnosed me as an overweight anxious depressant) i cant really buy the saliva test yet due to lack of funds, ive even tried selling so of my bits to raise the money, the 50mcg levo is my second increase, will ask about increasing to 75mcg when she calls tuesday

  • Ah, the heart scans. I've had more echocardiograms than most people have had hot dinners (slight exaggeration, obviously, unless your cooker has broken). Usually when I've been felling really awful and a doctor has listened to my heart and pulled a frightened face. Years of experience taught me to laugh and say "oh dear, does it sound terrible?" Which usually elicits of a look of relief on the doctor's face which I suspect equates to "thank goodness, she knows and I don't have to tell her".

    I've even been asked if I have a hole in my heart. Surprisingly (or not) now I'm on adrenal meds, my heart has changed out of all recognition.

    I suspect that thyroid and adrenal problems are the single biggest cause of unexplained cardiac arythmias. I personally know several people who've been taken to hospital because poorly treated thyroid has led to severe palpitations.

  • Rosetrees, which of Genova's three adrenal tests, would you recommend?

  • I don't know. This is the one I used, the adrenal stress profile. I'm afraid I don't know what SIgA is, that is measured in the Comprehensive profile.

  • I've just replied to you rosetrees but it seems to have drifted off into the ether ......

    Thank you for the link, I shall check it out now.

  • Mandy72,

    Change your doctor - he/she is hopeless. 50mcg and all those symptoms - now wonder you are so unwell. Is she out of her mind to ask you to go on the treadmill when you have no strength to get out of the chair. The problem with most, when weight is gained due to undermedicated/undiagnosed hypothyroidism they think it's our fault when in fact it is theirs. No knowledge of the function of the thyroid gland which controls all our metabolism from head to toe and they can cause us to get even more problems by undermedicating.

    Get a new blood test for your Thyroid Gland. TSH, T4, FreeT4, T3, FreeT3 tell them you are fed up being unwell and want to get to the root of the problem and you need these tests. Also Vitamin B12, Vit D, iron, feritin and folate if not had them within the year.

    The problem with doctors/endocrinologist they diagnose and medicate clinical symptoms but cannot get to the root (which is the thyroid gland) and without the essential life-giving hormones we develop more illnesses.

  • Please, please, Mandy, don't get a gastric band. Yes, it might make you lose some weight, but you could also starve to death with it because you won't be able to eat enough colories to survive, or absorb the vitamins and minerals that you need.

    It's not food making you fat, it's your Under-treated thyroid disease. As everyone else has said, she is unbelievably ignorant! Even more ignorant than my unbelievably ignorant doctor, but even he knew that my weight was due to my thyroid want not what I was eating.

    You will lose weight, I promise you, when you are getting a decent amount of T3 into you - either by converting your thyroxin or by taking T3. It's impossible to tell yet if you are converting properly because you don't get enough T4 to convert!

    There's a 99.9% chance that the weight you are carrying is water weight due to Under-treated hypo. That's what happens, we retain water big time! Water is heavy! 1 litre weighs 1 kilo. You imagine? But to get your body to release that water, you don't need exercise and you don't need low-calorie diets, you need T3.

    In fact, exercise and low-calory diets can be counter-productive because we need those calories to convert. So if you aren't taking in enough, and you then use them up on exercising, you aren't going to do any converting. And then you get more hypo and retain more water, and put on more weight.

    So, forget the gastric band (and forget the dietician because they know nothing about hypo!), forget the dieting and exercising - if anything, I would say eat more and rest a lot. Personnally, I would also forget your doctor, if you can't educate or control her. (I couldn't educate mine, but I could control him. lol) And refuse the treadmill test - you aren't obliged to take it, it won't prove anything useful, and it could do you harm.

    And just to give you a glimmer of hope, since I've been on a decent level of T3, with decent levels of vits and mins, I've lost over 40 kilos in just over 2 years. I still have other problems, everything is not hunky dory, but my weight is no longer one of them.

    Hugs, and good luck, Grey

  • thankyou for the advice, your right its thyroid

    im seeing a decent dr in october so hopefully can talk him round to another med or a decent increase

    i have relised what a lot of my problems were now and have posted a new thread on it

    i need to lose a lot of weight, have gone from a 16- 18 to almost 24, ive never been what you can call small but 11 kids got me to an 18 (too many cream cakes while pregnant) but the last few years its piled on

  • It's piled on because your thyroid isn't working properly! You need T3 to lose weight and you obviously haven't got any or your TSH wouldn't be so high. I just despair of these doctors, I really do!

  • the dr ive been seeing is hypo

    last year i told her i thought levo was making me bad

    her reply was 'theres nothing in thyroxine to make you ill, im on 175mcg and hae never been ill'

    thyroxine was stopped in november as i was so ill and even the endo diagnosed me as an overweight anxious depressant, he said i didnt have a thyroid condition even though i had symptoms

    100's of dr visits later my TSH was 20 and was given 25mcg levo, dr said 'i know you are not well on this but you will have to put up with it' 6 weeks later i think it was 12 and i was increased to 50mcg

    theres only on decent dr where i am and i see him 6th october as bloods due 1st october so im hoping he will look at other optons

  • Dear god!!! These doctors are dangerous! Their ignorance is.... words fail me. You should be on a much higher dose than 50. That's a starter dose. And you shouldn't be on it for more than 6 weeks or it will make you ill!

    And they should be doing the FT4 and FT3. That way they will know if you are converting or not. And they should dose by the FT3. Past a certain point, the TSH means nothing.

    Of course, ideally, they should be dosing by your symptoms, not by dubious lab tests. I often Wonder what goes on in these labs... Would love to be a fly on the wall!

    What I would say is that you need to learn as much as you can about your disease. That way you can fight your corner with these morons. Whilst they think you know nothing, they think they can get away with murder (almost literally!) and/or with doing nothing. But if they sense you know what you're talking about, they're much more likely to take notice.

    Read, read, read. Read everything on here. Search out sites on internet. It's all free, all it needs is your time. I know brain fog is a problem but if you read something often enough, you'll remember it. And there is a lot of repetition.

    Good luck with your next doctors appt. It should have been earlier, but...

  • she knows im an internet searcher and she knows ill ask for things as have asked for trial of HC as certain i have adrenal fatigue but she needs a cortisol test

    next visit ill take a list of what needs testing and suggest a trial on T3

  • Good for you!

    It's good she wants to do a cortisol test. Ideally, it should be a 24 hour saliva test, but most of us have to make do with an 8 o'clock blood test. But make sure it is at 8 o'clock for the best results.

  • Oh, and I forgot to say, your doctor is wrong about levo. You could be reacting badly to one of the fillers - a lot of people do. Or, if you can't convert it to T3, it will pool up in your blood and that will make you ill.

    For a hypo and a doctor, she doesn't know much about her disease, does she!

  • ive seen about pooling but not really looked into it

    and no she knows diddly squat about thyroid

  • Pft! You'll have to try educating her. After all, she stands to gain a lot, too.

    How is her health? Is she over-weight? Has she lost a lot of hair? Does she look... just unhealthy? lol I had an endo - my first - who looked as if she was about to expire on the spot. I don't know what was wrong with her but she was thin as a rake, boney, berk!

    She was deadly pale, and her hair was thin and lank and hung down in clumps! (She should have cut it - or at least washed it! But there you go...) It really didn't inspire confidence.

    But I soon found out she knew nothing about thyroid - she called herself an endo and a sports doctor, whatever that is, but I couldn't imagine her running a marathon or lifting weights!

    But she told me to eat soup, rice and boiled carrots, with zero fat (she also called herself a nutritionist!) and said I wasn't feeling better on 50 levo because of my negative attitude!

    Admittedly, she diagnosed my Hashi's, but that's only half the battle - then you have to know how to treat it! She didn't stay my endo for very long! lol

  • my dr is actually quite skinny nice healthy looking hair clear skin

    i have hashis not diagnosed by her or endo they both said there was inflamation at the time of scan, end stage thyroiditis

  • Ah, that does explain her lack of understanding. If she doesn't have any problems, why should anyone else?!? Shame really. lol

  • annoys me really because i know how i feel

    one of the drs who i no longer see unless emergency accused me of making things up to get medication after i reacted badly to pregabalin that he gave me

  • Yes, they think we're too stupid to know how we feel! I told my doctor I'm the expert on this disease because I've been living with it, in my body, for the past 50+ years. He said yes, but I have an advantage over you, I've been practicing medecin for over 40 years. I said so what! lol And this is a man that tells me a) magnesium is of no importance to the body b) women don't need testosterone, and c) he knows better than all the endos because endos are 'too literal'!!! Whatever that means! Yet he had no idea what T4 and T3 were and only goes by the TSH. I stuck with him for a little while because he was willing to prescribe T3, but in the end he just got to ignorant for me to bear! I thought I might end up sloshing him one one day. lol

    One remark I really love is 'oh, you shouldn't be feeling that much pain!'. Well, I bloody do! So do something about it! lol

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