First endo appoint today advice needed

Just a quick update in feb my TSH was 3.47 T4 12.4.... High SE thyroid peroxidose antibodies

Have all the symptoms...fatigue...unexplained weight gain...thinning hair...dry skin...cold majorly foggy head ( this is my worse symptom) vision has worsened...ect..

Went GP...crap basically... Altho did offer me anti depressants...i refused and told him not to put antidepressants on my record as  i clearly AM NOT depressed

Started taking lots of vitamins and minerals to bring some of my levels into more optimal range

3 week ago TSH 3.54 T4 11.9

had endo appoint today usual story he now wants to run hormone tests tomorro i am up for serum ferritin (again) ,9am cortisol ,prolactin TSH and T4 (again) and a serum something or other i cant read also he says i wil get an appoint for the cortisol injection test ( checking adrenals) wont do a T3... I did ask...i also put a good case forward...fought my corner...even told him i was training to be a fitness instructor and have had to pull out as no longer have the energy levels

Anyway the long and short of it is this....he gave the story i was expecting ( after my months of research) they dont treat till dreaded TSH is 5... So he wants to check everything else is in order...ok i except that but i asked him if they all come back adequate what then ?? You leave me feeling like this for another 6 months? A year? 2 years?

By the way i go to the gym regularly and eat a super clean diet...no dairy wheat/gluten and i am now vegetarian..have had the vit D test folate ferratin B12... And am supplimenting to bring them to optimal range.

My predicament is this....how long do i let them drag this out for because im already feeling awful...i want my energy back!!! 

I feel i have been very pro active so far...i have researched well and wont be fobbed off allowing my health to deteriate further and for no apparent reason...i feel i have done my part...exercise..healthy eating and lifestyle...suppliments ect and am not happy with the prospect of me feeling like this tomorro let alone in 6 months

So...the question is this...im not afraid to self medicate should all these further tests come back that im not menaupasal ( im 48) neurotic or psycotic lol.... Advice on how i do it please? I have bought one packet of 25mg levo in the pharmacy in Turkey last week where do u buy online? And whats the reccomended starting dose? Im 5 ft 5 and 10.4.. This is the bit i havnt researched...mainly because i was the one that thought i would prove you all wrong and walk out of my endo appoint thyroxine in hand and punching the air in triamph......um...not to be...

What would you do in my situation?

22 Replies

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  • Hi k, I've read many posts here so feel qualified to tell you, "yes, they do not mind watching patients deteriorate due to low thyroid symptoms".  I'm not in the UK but I know they stick with policies which are very detrimental.   I think someone posted earlier the outrageous policies they stick with no matter what.   In fact it mentions the fact they often refuse the most important test needed to make a diagnosis.....FT3 so they will not have to prescribe T3 I guess.  Disgusting.  You have to decide if you want to dispense with them entirely or find the balance where you at least get testing done through the NHS but obtain your own hormone. 

    At your age, your progesterone could be low.  There are also toxines like fluoride, chlorine and bromides which may cause a lack of iodine which your thyroid needs. 

    stopthethyroidmadness.com/m...

    stopthethyroidmadness.com/l...

  • Go for Private Testing through Thyroid UK .....

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

    ...and find out what your FT3 is ....

    Also the Cortisol test you are having will not reveal as much as the 24 hour Saliva Test - which again is private - and through Genova Diagnsotics.

    What were the results of your B12 - Ferritin - folate - VitD ??

  • I agree that this 9am cortisol test is a complete waste of time...and this is 2nd time they ar doing it b12 was563 ngl

    Serum folate 7.6ug/L

    Serum ferritin 27 ug/L

    Vit D 250H was 102nmol/L

    Serum cortisol 209 nmol/L

    This was on 16/2/16 and have been supplimenting ever since

  • Your Ferritin is seriously low.  What supplements are you taking and how much ?

    As your FT4is low - it is reasonable to think the FT3 will also be very low.  A hormone needed in every cell of your body - so not enough to go around.  Hence things are going wrong.

  • While im quite willing to have extra testing done privately if need be...what if the GP wont acknowlege the results??? I have read others are having this problem

  • At least you will know the full outcome and can then take the appropriate action ....

  • Hi K

    I'm afraid I have no answers - just sympathy.  I feel like I have lost 3 years of my life 'waiting' for my levels to get 'bad' enough to treat.  I have had to give up all exercise, an evening class and cut my hours at work.  Have been offered antidepressants but not taken them.   This time of year always seems worse - I feel like a zombie!

    Keep fighting and don't give up - I mainly just wanted you to know you are not alone.  Let's hope we can both get well again.

  • Bless you thankyou...it seems WE are certainly NOT alone this appears to be the norm..oh you can have anti depressants but not thyroxine????? Why? Hoping i wil get so sick i will have no alternative than to take a shed load of other tablets too...no way hoze!

  • Post another question asking for "private messages" about where to obtain some hormones.  There are very good ones available and I don't think they are that expensive.  

    There have been testimonials of recovery by doing it themselves.  No reason to suffer.

  • Sorry for delay in replying - I have been struggling!  Went back to Dr on Fri, to be offered antidepressants again.  She made me feel like a total idiot and I came home and cried.   Yes, my TSH has peaked at 4.2 but I have a good diet and have taken supplements from the advice of people on here.  They brought my TSH back down to 2.6.  The dr said my TSH is  COMPLETELY normal, as it always has been and it is stress that is causing me to feel so exhausted.

    My question is, if I do have pure depression, why do I WANT to get up and do things but jsut feel too unwell to do them?  Why do I manage to enjoy my job and keep going all day, only to come home and need to go straight to bed.  And would depression ease with rest - as I find in the summer hols (I am a teacher) I improve with lots of resting.  I thought depression would not improve through rest but through gentle activity to boost your system.  In fact, I find doing exercise makes me worse.

    Grrr.  I am reluctant to self medicate as it sounds scary to do so, and I wanted to keep the drs on side.  However, if I still feel like this in 3 months time, I might think about it.

    I have nothing against taking antidepressants as such, but it's just I don't think it;s the right thing for me.  My sister successfully treated true depression with them, although she was wiped out when on them. I can't become more sluggish than I already am, I have a family and job to hold down!

    Best of luck - sorry for the rant!

  • Hi..you are certainly not ranting...just expressing and that is what this forum is all about after all it is the only place i feel listened too.  For me i am not scared about self medicating...i feel i have done enough research to know its not a difficult thing to do and it seems so many others are also having to do it due to not being listened to... As for anti depressants...i agree with you on that one...i refused as i know catagorically i am in no way depressed...i am absolutely exhausted but not depressed...there is a big difference here! I have researched enough to know that it is quite common for unsympathetic doctors to prescribe antidepresants..and then obviously the patient gets worse...

    My endo did actually say to me that my healthy eating and use of exercise is helping to keep my levels at bay  ( if there was indeed a problem)  so i am like you caught between the devil and the deep blue sea...keep healthy by eating right and exercising therefore dragging it out...or go hell for leather and eat unhealthy give up the gym...put on a shed load of weight and feel terrible more quickly...THEN have the problem of cleaning up my lifestyle and loosin the excess weight when finally diagnosed....well for me i have decided im not changing my lifestyle as i firmly believe i will be storing up trouble later on...

    I am awaiting the bloods i had done couple of days ago...see what endo says then if he is still insisting my TSH is normal and refusing to treat my symptoms...then i, gonna trial my own levo! Or i could find myself still here in a years time!!!

  • I take it your results are similar to mine and you also are bound by the blooming TSH? My endo said yesterday that my good diet may be keeping it bay!!!! Oh so do i ditch healthy living to get fat and unfit so you treat me quicker??? Bloody outcry!!! Im sooooo annoyed

  • I think the usual starting dose for Levothyroxine is 50mcg a day, or 25mcg if you have a history of heart problems or are over 65. Then you increase every 6 weeks until you feel well, but if you get symptoms of overmedication you stop all medication for a couple of days, then start again at a lower dose. This is because Levothyroxine takes 6 weeks or so to build up in your system, and takes a while to leave your system if you take too much.

    If you have thyroid antibodies then you will probably find you need an increasing dose over the months and years as your thyroid shuts down in response to the antibody attack.

  • Most informative thankyou....so in saying that for those people self medicating where are they getting it from and whynis it such a secret? Its not illegal

  • It's legal, but it's the Policy of this forum not to publically name sites where you can get prescription medication without a prescription. There are many reasons for that.

    However, there's nothing to stop people PMing you with links if you ask them to.

    I would just like to say, that if you are hypo, with low T3, going to the gym is going to make things worse - yes, I know! Exercising uses up your T3, and if you Don't have enough to start with, it's going to make you more hypo - that's what hypo is, that's what causes symptoms, low T3.

    Exercising also uses up your calories, and you need calories to convert T4 to T3 - even the T4 that your gland makes. So, just gentle walking until you have optimal levels of T3. :)     

  • Thankyou for clearing that up about the prescription thing...

    So as i have been refused the T3 test by my GP and endo only been allowed T4 and TSH i was indeed right in thinking i need to know my T3?

    So excuse me here while i try to make sense of this...

    Some people are just low in T4 so they take levo and happy days...and some have low T3 because of conversion so they need the armour? Only way to tell is to have the T3 test which should be a matter of course anyway or we will be prescribed levo for no reason coz it wont work

    This could therefore be why i eat super clean diet that most people would lose weight on and i exercise (although granted i have had to cut that down as i do not have the energy levels for it) and i have actually put weight on ( how frustrating is THAT??) am i correct in my train of thought?

    Also as my doctor and ENDO are saying at the moment my T4 and TSH are in range therefore normal...would i be way out in thinking i should go hell for leather at the gym to hurry it along therefore speeding up this process that i seem to be stuck in? And yes i know that sounds crazy....and gosh it will be hard work mentally and physically...but is it an option???

    For those of us "in range" who are in a predicament like me

  • Yes, I think you would be pretty way out in thinking that. Killing yourself in the gym might raise your TSH slightly - but I wouldn't count on it, the TSH is far too capricious to oblige without a struggle - and I very much doubt it would reach the magic number 5 that way. And it wouldn't reduce your FT4 much, either. It would just make you feel very, very bad. Is it Worth the risk?

    No, some people are not just low in T4 and therefore are happy on Levo. If the T4 is low, and the TSH over 2, the odds are that the T3 is going to be low, too. People start on Levo, and if they can convert it, they are happy on it. The problems start when they can't convert it!

    Doctors believe that everyone is capable of converting properly. I believe - and someone correct me if I'm wrong - that everybody is capable of converting T4 made by their own thyroid glands. But that does not automatically mean that they are capable of converting any form of T4 taken by mouth. Not even the T4 in NDT.

    The best thing to do is to start on Levo, get the TSH down to one or below, and then test the FT4 and FT3 at the same time, to see if you are successfully converting the Levo into T3. If not, then you have to find another solution : NDT, T4+T3 or T3 only.

     

    However, doctors learnt in med school that TSH is THE test that shows everything, and that everyone is capable of converting all forms of T4, and that therefore testing the FT3 is irrelevant and treating with Levo is the only way to go. That's what they've learnt. And what they learn in med school is sacred, and everything else is heresy. They also learn that all patients are liars and therefore you are obviously making your symptoms up!

    I agree, you are in a predicament, and you have done your bit by exercising and eating well, but life's a bitch! And there's not much you can do about it - except... Take matters into your own hands and self-treat. As you've already decided to do, I think, in your heart of hearts.

    However, if you are going to go down that road, I wouldn't personally mess around with Levo. I would go directly onto some form of NDT. Although, I have to warn you, NDT doesn't suit everybody, no matter what you've read. It especially doesn't suit some people with Hashi's. But, nothing ventured, nothing gained.

    And, FYI, a starting dose of Levo is 50 mcg, tested and raised by 25 mcg every six weeks until all symptoms are gone. For NDT the starting dose is half a grain, increasing by half a grain every two weeks until you reach two grains, then hold for six weeks and get tested. There after, you increase by quarter grains until you find your sweet spot.

    But, before you do that, I think you ought to think ahead a little, about the conséquences of self-treating, and have a plan of action. What are you going to do once you've started self-treating? Are you going to go back to your doctor after 6 weeks, 'fess up and ask for a blood test? Or are you going to get your blood tests done privately? Or, again, are you going to try and dose by symptoms? If you're going to do that, then you're going to have to read a hell of a lot more on the subject.

    Once you have a plan of action, then it would be a good idea, I think, to wait until you've got the results of your latest blood tests, and see what your doctors say about it. If they still won't play ball, then you either tell them what you intend to do (so there!) or you walk out, head held high and a toss of your fiery mane, and go on to forge your own destiny.

    Then, write another question on here, asking people where you can buy the thyroid hormone replacement of your choice, answers by PM only, please. :)      

  • how long do i let them drag this out for

    Don't do what I did. I was told my thyroid was "borderline" in 1990(ish). I don't know what that meant in numerical terms, I was never told and I didn't ask.

    23 years later I was given my first ever prescription for 25mcg levothyroxine per day. I had to really beg for it and my doctor thought I was a demanding, attention-seeking hypochondriac. I did really badly on the levo and I started self-medicating less than 6 months later.

  • It seems i am not alone...do you do all your own blood tests ect?

  • Yes, I pay for my own blood tests. But after nearly 3 years of self-medicating, and getting a lot better in the process, I'm beginning to feel confident that I know when my dose of thyroid meds needs to change. People used to dose according to symptoms because blood tests weren't available. I'm doing the same as much as possible.

    I still test for vitamins and minerals though - I still can't work out if they are optimal or not without a test.

    I'm thinking of spending money this year on some tests I've never had before e.g. zinc and copper. But I don't like spending money - the stuff is so hard to come by!

  • So you had levo...it wasnt good so you got a T3 done?

  • Looking at the blue horizon site what test is now reccomended...i have had TSH T4 and TPO antibodies which were high ....ive had the Vit D folate ferritin B12 all on nhs so do i need T3 or free T3. .? Trying to do this the least expensive way....thank you

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