Results, now I feel flat, deflated and ready to give up!

So today has been the day I've been counting towards, hoping to find answers. Met with the endo today to be told all my results came back negative.

So adrenals are apparently fine, coleliacs negative too.

So..I still have no answers ๐Ÿ˜”

She asked me loads of questions. Which were basically prodding at lifestyle trying to see if it was because of smoking and drinking, and how I felt so trying to work out if I was depressed or not....this then led onto being being "explained" to that sometimes it's around expectations.....

So basically I was being told how the body of someone in there twenties won't feel the same as someone in their thirties etc (forgive me but I don't think 32 is old?!?) and despite what anyone's definition of old is....my symptoms have been going on since I was in my 20's!!

Oh dear lord how patronising

Then moved onto exercise and weight, I basically said I love to exercise when I'm not too tired to do?!?she suggested some people feel better by even losing half a stone, I said I did lose weight however I was too blooming tired from it all?!? I'd rather be a size 14 and less tired than a 12 and too tired to see the world.

However once she moved on from that she did say that guidelines state that when thyroid levels within range that they don't recommend treatment due to heart problems and osteoporosis. She did however say she has looked into research about trialling thyroxine when low/high in range and symptomatic. She said its controversial, but she did say that although it's not recommended, it does benefit some patients.

She said it doesn't necessarily benefit all. She said she would write to my doctor and explain that perhaps a trial for 3 months of 25mg could be considered but would be for me and my doctor to discuss. She said no long than a 3 mth trial and no increases she said 50mg would be the max. She did say if symptoms weren't relived on the dose then she would say to not continue.

Again she said this would be something though that me and my GP would need to discuss as is outside of guidelines and not that what's she can actually recommend (did admit it does help some and she thinks would be worth a trial if doc agrees)

She said normally at least one person a week she sees that walks out without answers and sometimes a trial helps and sometimes it doesn't. (Think she's saying that perhaps I won't find answers)

So basically that's it, back to docs, no answers and no way forward.

Feeling annoyed and feeling like giving up looking for answers now.

I will speaking my doc as I would like a rescan of kidneys and her to check my throat but other than that I'm just deflated.

๐Ÿ˜”๐Ÿ˜”๐Ÿ˜”

Sorry for the moan but frustrated isnt the word

36 Replies

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  • I am waiting to see the most sympathetic Dr in my GP practice and want to ask her for an Endo referral.

    She seemed ok with giving me a trial of 25mg of Levo but seeing/reading so much about how Levo isn't the actual answer for a lot of people then I'm thinking mmmm.... what do I want to do next myself?!

    Do you know what your TSH, T4 and T3 levels are? Have you been tested for ferritin, folate, Vit B12 and Vit D?

  • I think I have read that Levo works fine for 80-90% of people.

    Just had news of a friend in France - diagnosed hypo - and within a few weeks of Thyroxine treatment she felt great, all symptoms gone.

  • There seems to be a bit of an anti Levo backlash on a few websites at the moment from what I can see/read but if it works for your friend that's great! :)

  • Ahh that's good news for you friend โ˜บ๏ธ Lovely hearing things going right and someone feeling better โ˜บ๏ธ

  • Hi kk12

    Ahh fingers crossed for you and your referral...it can all seem like hard work sometimes ๐Ÿ˜” I hope yours comes through quickly! It's good that your doc is considering a trial for you to see if that helps you

    It's the waiting game that's hard too!

    I've had a couple of blood tests TSH and T4 were in range (low end I might add) antibodies came back + but GP and Endos reluctant to say that's causing you symptoms.

    B12, calcium low in range, ferritin and folate low.

    I've been looking into the right supplements so going to try that and try gluten free anything worth a shot..then wait to hear back from docs (if I do!)

  • Ying-yang3,

    You need to do the Genova saliva stress test to get a compressive record of how your adenals are performing. Doctors only recognise a blood test which doesn't give a good overview as only measures free and bound cortisol, giving no indication as to how much is actually available for activity.

    You will only test positive for Celiac Disease if you are at the extreme end of the spectrum. Anyone slightly less is not recognised to have a problem.

    Sometimes a low dose like 25mcg Levothyroxine can just make your thyroid, which has been struggling to produce enough thyroxine, take a bit of a break and produce even less, so being counter productive. A better starting dose would be 50mg.

    Endos speak to us as if we are children because they don't know the answers so have to be condersending to keep a control of the situation.

    Flower007

  • Ahh, okay! I have seen people speak about the saliva test on here, perhaps I should look into that. But I didn't really take much in about it as I knew i had my short synacthen test booked.

    I did know that the celiac test would probably come back negative but I really believe that gluten is an issue. I guess all I can do is go gluten free and see if I feel better, it is annoying having tests done when u know that the chances are it's going to show nothing?!?

    As for the dose I'll just have to wait I guess! I don't think my doctor will recc the trial of levo as I think I was only referred to endo as I pushed it. But endo did say starting 25 and 50 would be max if it went ahead anyway.

    I really did feel, lovely as she was, patronised.

    I know someone in their twenties and thirties and forties will all feel different. I know too much sleep can make people feel sluggish and I know sometimes people feel better losing weight. It was lovely for the primary school biology lesson but I did know that ๐Ÿ˜”

    Thanks for your reply it's nice to have it confirmed that the tests aren't the be all and end all

  • Ying, your endo sounds extremely slippery. If she thinks a trial might be useful despite bloods not being abnormal she should have given you a prescription to be dispensed at the hospital pharmacy and recommended a treatment plan of 25-50mcg which your GP should follow. GPs refer to endocrinology for 'expert' management, not a lot of waffle which gets her off a protocol hook and hangs your GP on it.

    If your GP agrees to prescribe a trial, good. If not, buy your own on the internet and trial it yourself. Either way you get to see whether Levothyroxine helps.

    ps I hope you're copied in on correspondence reviewing the consultation to your GP.

  • Hi clutter,

    Yeah she definitely didn't want to be prescribing anything outside of protocol.

    She did day she's read controversial research and agreed that it has helped people but defo didn't want to be the one issuing it!

    I'm not sure my doctor will agree to the trial I'll just have to wait and see.

    I did ask for a print out but something about her printer?!

    I've written a letter for my surgery to ask for all medical info so hopefully will include this latest one.

    I feel a bit calmer today but was really really frustrated yesterday.

    I guess at least now all the tests are complete I can go ahead and make the changes I want to anyway

    Thanks for all the Info you have given me since joining the site โ˜บ๏ธ

  • Clutter,

    Surely the fact the endo has written to the GP is proof that she is endorcing the use of Levothyroxine and therefore would be held responsible. Perhaps she meant the GP needed asking as "outside of protocol" he could refuse to prescribe.

    There would be no point in the endo prescribing from the hospital pharmacy if the GP was then not agreeble to continue the treatment.

    This is a very grey area

    Flower007

  • Ahh I see what you are saying flower. That does make sense

    The endo did say there's nothing else she could do and was basically releasing me back to my doctor so will be down to my doctor and me.

    I'll just wait to hear from my doctor, I need to see my GP soon about a couple of other health issues so will see her soon either way.

    Ahh thanks for your input โ˜บ๏ธ

  • I am so sorry to hear your doctor was so ignorant. I know how it feels. One doctor just recently diagnosed me being over critical towards myself since I want to be able exercise normally.

    I am 36 and to him it was normal I can barely walk. I filed a complaint.

    Let's hope levo trial works for you :)

  • I know! It's so disheartening, I don't think anyone is expecting to become Mr Bolt or anything, but to live through the day instead of getting through the day so I can sit on the couch isn't too much to ask!

    You don't have to be a rocket scienetist, or a doctor, to know what it's like to feel 'normal' ๐Ÿ˜ณ๐Ÿ˜ณ

    How did you get on with your complaint?

  • Exactly! Doctors are supposed to be smart :O

    Dr. Jerk as I call him said that we all feel tired sometimes... oh really!?! I had no idea people feel tired sometimes :P

    Case closed then, nothing wrong with me.

    I received letter this week that my complaint is in process and is handled soon. Don't know whether it has any affect but at least they will delete his statement from my records.

    I assume he diagnosed me hypochondriac, depressed and hysterical. I want that to be removed as it will otherwise affect how I will be treated in the future. Nobody will take me seriously.

  • Ahh you poor thing!

    I don't blame you...especially as they are opinions not facts!

    It shows what doctors think when they feel they have to tell people that it's normal to get tired! But there is a normal level of tiredness?!?

    My nearly 80 year old Gran has more energy than I have...now tell me is that normal?

    I don't understand why doctors are so happy to diagnose depression??? It really baffles me....

    I hope buoy get positive outcome to your complaint ๐Ÿ™๐Ÿป

  • I guess diagnosing depression is just easy since there are so many symptoms that fit in.

    - fatigue

    -weight loss

    Oh it is depression.

    -fatigue

    -weight gain

    Oh it is depression.

    I think they are so thrilled, like they would have re-invented a wheel that they ignore the rest of the symptoms lol.

    Drug companies have brainwashed doctors to think depression is common and prescribing happy pills saves the world.

    If you refuse to take it then doctor will get upset since you have guts to defend yourself. Oh that is sign of depression too, patient is hypochondriac and uncooperative.

    I find it so ridiculous that depression seems to have all possible symptoms in the world. Pretty much every illness fits in.

    Maybe it is just easy for doctor to make a diagnose of something, hope it to be right and keep fingers crossed that happy pills makes patient a zombie and they stop complain.

  • It's a bit lazy isn't it! I'm not saying there aren't people with depression and I'm sure a lot of people go through it at some stage, sometimes I'd say it's a symptom rather than a cause though! And I dont believe pills are necessarily the answer when people are suffering from it ๐Ÿ˜”

    I'll not take antidepressants! I don't want a pill to make me happy, I would like to not feel ill that is all...I'd rather feel ill than take anti-d's tho! Then iOS just feel ill, zombie ire and completely defeated...no ta!!

  • I agree. There is real depression that needs to be treated properly and then depression as a symptom which cannot be treated with happy pills.

    And I find it NORMAL for one to be depressed when ill and not getting treatment. Like it is normal to feel depressed after something bad has happened in your life.

    It is sad, sick and outrageous that these days day consider sadness that has lasted for two weeks for example if you lost loved one to be treated as severe depression.

    Doctors don't seem to read latest studies about deficiencies and so causing depression/anxiety. Or they have no idea that birth control pills, antibiotics, ppi's and many other meds are antagonist to b12. Nobody tells you that. Nobody recommends to take vitamins when on certain medication.

    Vitamins are not good business and I feel so many doctors have forgot that they are supposed to help.

    Same with thyroid issues. They think on pill should make you healthy and ignore the fact that we all are individuals and everyone has different hormonal balance.

    I hope they come up with proper genetic test they can use to examine what works the best for one.

    There is test for other drugs already. Even for happy pills. I hope they start to use that too so one does not have to go through dozens of meds before finding the one that works.

  • Well said! No one wants to take medication unnecessarily ๐Ÿ˜”

    All the advice you hear, 'you k ow your body, listen to your body, go to the doctors if you don't feel right' perfect advice, it's the next bit that doesn't seem to work!

  • I would say that it's easier to diagnose you with depression than a thyroid issue!

  • Have been reading your thread on the PAS forum and can see that with your vitamin and mineral deficiencies mentioned - it is unlikely that introducing T4 would be helpful. You need your levels to be optimal for Ferritin - B12 - Iron - Folate - VitD for your thyroid hormones to work well....

    It could be these deficiencies are making you feel poorly and going gluten free could possibly help to reduce your ant-bodies.... There is so much to be done and I can appreciate how difficult and overwhelming it can be. I was diagnosed with Hashimotos in 2005 - and yes it can be a long journey to wellness. A step at a time. Put the foundations in place first - vitamins and minerals - and then start to build :-)

  • Hi marz,

    Thank you so much for your reply.

    Yes I think your right that the vits are playing a part! I was waiting for the results before I made any changes, so at least now I can do that!

    I've been looking and found jarrows B12 so going to order that today from Amazon I think, going to see what I can find it the way of folate and calcium and a general vit and see how that works. Will start them as soon as I find and order them(that's my hit list for today)

    I'm thinking of starting gluten free now asap, I just need to see what I can replace breakfast with and make sure I know what to look for on labels. Ill probably realistically start next week.

    Thank you marz, I am definitely going to do it one step at a time โ˜บ๏ธ It's hard now I do feel a little deflated by it all though, hopefully I won't once it all starts to improve.

  • Jarrow B12 is in 5000mcg or 1000mcg - as you are so low I would go for the higher one ! You will need a GOOD B Complex to keep all the other B's in balance. Selenium is good along with magnesium - zinc and other minerals. Large amounts of VitC is good for the Adrenals.

    When going gluten free - I would just cook from scratch - then you do not have to read the labels :-) I eat all sorts of different things for breakfast - its amazing how creative you will become :-)

    Have a quick look at my edited profile - then you will see that for many of us finding wellness can be a journey - but one worth taking :-)

  • Can I ask which B complex you use?

    I'm struggling to differentiate between them all?

    Ahh yes, I do cook from scratch mostly for lunches and dinner...but breakfast tithe part that's troubling me...I usually have toast or cereal...I guess perhaps yogurt and fruit...but not sure I could eat that every day though ๐Ÿ˜‚

    Ahh I'll have a look at your profile now โ˜บ๏ธ

    Thanks for your. Advice all the advice I have received has been so helpful x

  • Ahh you have been in a journey!! It sounds like you've had to do a lot of work on your health to get yourself as well as you can! Must be a fab relationship with your hubby as you must both completely understand each other โ˜บ๏ธ

    It's hard that people have to go through such a journey.

    All of the positive things I have heard since being in this forum have come from when people take it upon themselves to get themselves better!

    I don't think I've ever heard a positive outcome from a doctor writing off a patient as depressed!!!

    Vits and minerals do seem to have a massive impact...I'm holding high hopes for them! Do you get your locally or order them?

  • I mostly buy from the Internet - Amazon and others. I take the Thorne Research B complex - it is a little more expensive - as it contains methylfolate rather than Folic Acid. It was suggested to me by someone who knows more about B12 than me :-)

    I quite like roasted veg for breakfast ! Have two trays roasting at the moment - will pour balsamic over them when still hot and leave to cool :-) Egg and bacon is gluten free too :-)

  • Ahh brill thanks marz โ˜บ๏ธ Searching Amazon at the moment x

    Ahh bacon and egg...can't complain at that now ๐Ÿ˜‚

  • Ying, porridge is g-f and so is haloumi cheese which is delicious grilled.

  • Oh is it!! I didn't know that! I assumed porridge was from wheat haha I was never any good at home ec at school lol!

    Now on my shopping list lol

  • ..best to check the oats are GF as they can be contaminated in the factory from wheat products.... loads of websites with fab recipes....

  • Also they can be contaminated in the field from wheat.

  • I can see this is going to take some time to get used to and a change in shopping habits!

    Thanks for the hints

  • 25 mcg of Levo is 1/4 grain of NDT. 50 mcg of Levo is 1/2 grain NDT. If you have hypothyroidism these are not good long term doses. The body can actually get more hypothyroid on too low of a dose. My doctor says that the body gets just a little bit of thyroid hormone and then stops making its own.

    If your doc says you can never go above 50 you will probably end up feeling worse.

    If you intend to be on thyroid hormone long term you need to be closer to replacing what your body makes, not supplementing it.

    Hypothyroid bodies are lazy. You give them a little bit of help and they say hey, thanks, I'm going to go to sleep now :)

    I definitely felt worse on a baby dose of 1/2 grain NDT than no medication at all.

  • Yes I have read on this forum before that sometimes the small doses aren't enough.

    The way you've explained it makes perfect sense to me.

    Well I guess all I can do is see what the doctor says. It was the endo that was saying all of this to me...she's basically discharged me back to my doctor now.

    Thing is TSH, T4 is in range, so therefore they don't see me as hypothyroid. I do have elevated antibodies but no one seems bothered by that!

    My next step is trying gluten free and I've ordered supplants from Amazon, and now await the appointment I guess?!

    I don't like that idea of making things worse by trialling it and it not working...I might be worse off rather than better ๐Ÿ˜ณ

    Thanks for your reply tick

  • If you are okay self medicating it seems many have success with ordering Thiroyd-S or however you spell it.

    If you have antibodies / Hashimoto's it will be a more difficult journey though. It seems impossible to get completely stable on just thyroid hormone alone with AI in the mix.

    Vitamin D3 supplementation helps a lot but ONLY when I am on thyroid hormone already. I tried taking it before I was on NDT and it made me feel worse. I don't know why.

    Vitamin A is also supposed to help your body use T4. I take a rather high dose (25,000 IU) that is still in the safe range because it seems to help my complexion as well.

  • I didn't think I would need to self medicate...but I guess I'll have to not rule it out I'll just have to see how it all goes I guess.

    Yes from what I've seen on here hashimotos does seem to be full of ups and downs. I'm thinking if I can go GF and take suppliments then perhaps I give the trial the best shot (wishful thinking) that's it doc agrees to trial.

    I ordered suppliments last night, now after advice and discussions I was looking to order B12 and a B complex.

    I've just gone to check and I think it was a multi vit instead of B complex so may need to change my order ๐Ÿ˜ณ brain just doesn't work!

    Vit A! That's interesting! Didn't realise that! Will have a look...my complexion is terrible ๐Ÿ˜”

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