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Thyroid UK
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Finally been labeled as a crazy due to hashimoto's and it was heartbreaking

So I've been in probably the worst healthcare system i've ever experienced where nobody knows a thing about autoimmune or how to test for or even listen to their patients and just label us as hypochondriacs. What made it worse was an email suggesting I get a neuropsychological test as he believes its not quite medical disability but mental!? so as for my tests this was the only TSH id been fasting for 12 hours as it was snuck in for glucose and I had never been told to fast? very typical of modern GP's:

COMPONENTYOUR VALUESTANDARD RANGE

TSH5.41 uIU/mL0.40 - 4.20 uIU/mL

I have the only vitamin tests in my other post and I somehow think i've become b12 deficent despite what may have been a false reading. I gained nearly 200 .lbs in 2014-2015 and sickeningly lost nearly 70 over the last year and a half w/o diet or excercise. I am very scared rn im already heartbroken that everyone I love and cared for believe me to be beyond sick in the head. I suppose i'm looking for anyone who can understand what i'm going through :( For now I have emotional support from my BF and he continues to try to help me w/ a diagnosis.

I should add the one TPO test I got was 61 over 9 so I had beginnings of Hashimoto a while back, would not be surprised if its risen.

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We have all met doctors with levels of ignorance at some point or other which is why we have joined this forum to get answers. But welcome! You have come to the right place. I don't have antibodies but I'm sure someone will come along with more info about that for you. I can say though that everything in the Thyroid world takes time though whether it be your initial diagnosis, raising your dose itcits right for you or waiting for symptoms to be corrected once on the dose that is right for you so patience is needed so good as well that you have the support of your boy friend.

Always ask for a copy of your bloods and the ranges. The ranges are important as they differ from lab to lab so if you want to sharexany results with us for comments then don't forget the ranges or we would just be guessing.

It's also useful to keep a diary as well. Wish I had done as useful to jot down your dose and how you are feeling so you can refer to it if needed at a later date.

Addition-just read more of your history. Can you post your reasilts and ranges so we can see if you have any problems.

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The only most efficient results I can post are my single fasting TSH I had in my first post and the results from my nearly year old TPO test sadly I cannot find any doctors within my garbage insurance who even know what immune disorders are, but here are the ones I can provide:

THYROGLOBULIN ANTIBODIES

THYROGLOBULIN ANTIBODIES 1 < or = 1 IU/mL 01

THYROID PEROXIDASE ANTIBODIES

THYROID PEROXIDASE ANTIBODIES 61 HIGH <9 IU/mL 01

T4, FREE

T4, FREE 1.2 0.8-1.8 ng/dL 02

T3, FREE

T3, FREE 2.9 2.3-4.2 pg/mL 02

TSH5.41 uIU/mL0.40 - 4.20 uIU/mL

Aside from the TSH all the others including TPO are nearly a year old most of these were privately tested due to not getting anywhere with my GP's been to about 3 on my new 4th at the moment. TSH was middle of this year and the only time i'd properly fasted.

My symtpoms are extreme fatigue, unable to digest most all foods at this point due to intolerance, extreme weight loss (potential crohn's or maybe graves) w/o diet or excercise at all, puffy face, lots of yeast infection/BV, IBS and crippling stomach/gut problems etc. :(

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Well it looks to me as if you have Hashis so I am sure that you are aware of the advice to help calm the autoimmune elements? If not then buy the Amy Myers and Isabella Wentz books, sign up for their newsletters etc. You should consider going gluten free if you are not already, and may find the AIP elimination diet helpful to identify reactive foods.

I agree that your Docotrs are not actually looking at your tests as you are low in ferritin and B12, with a TSH out of range. The advice in the UK should be expect decline and monitor, but we are rarely told that. If you have antibodies, symptoms, and altered bloods then there are grounds for a trial of hormone replacement but it is a rare doctor that will prescribe until the TSH is sky high and your symptoms are those of total collapses. They believe that thyroid issues are easy to treat so do so with ineptitude. Sorry I can not be more helpful other than to agree with you that your Thyroid is struggling and that it may be the cause of all your symptoms. Stick with it.

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This is all I ask haha people who understand :) I agree though, there seems to be a lack of knowledge all over about autoimmune disorders and so many suffer due to this dilemma. I guess as for right now just have to keep looking for a miracle or some diagnosis with new GP that could lead to further help? guess i'll wait and see. At least i've certainly had a fair share of caring people along the way certainly does brighten me up a little to know some can have empathy/sympathy despite not suffering themselves :)

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🌺

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Hi,so sorry to hear about your experience. Sadly, you are far from alone with it. I had the same story, and as a result am studying Naturopathy and functional medicine It's a scary system

Autoimmune conditions attack particular body systems, depending on your ailment. Once you have one, you are more susceptible to others as the immune system has lost its ability to balance and recognise self from non self.

At this stage, while you investigate further, you may benefit by removing aggravating foods from your diet. Such goods may trigger attacks from your immune system.

As a starting point remove Gluten dairy and night shade foods. You should feel s huge difference, though keep away from processed gluten free food:) by removing such foods,you will allow your body to start healing and you will reduce inflammation

Test your vitamin D, it's likely to be under.

Importantly,you are not nuts! There is light st the end of the tunnel , good luck!

Dania

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Thank you so much! Ive definitely been having a hard time going bad-food free haha my resolution for the end of the year is to start pronto on AIP diet and get the majority of energy and some of my life back :) I suppose when suffering from lack of diagnosis I can start most by helping myself feel optimal. And I think it's fantastic what you plan to do, best of luck you'll be helping so many that regular GP's can't help :) I actually went to a Naturopathic doctor she was the most understanding of my illness as she had her own story and for once I felt cared about.

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Hi Sasha, have you heard of Kelly Brogan. (kellybroganmd.com).She is a functional psychiatrist, who treats with diet and lifestyle modifications. Mental health issues are common when your thyroid and guts aren't working properly. I was able to come off anti-depressants once I started the Paleo Autoimmune Protocol and switched from Levothyroxine to NDT. Fermented foods are very important for gut healing. I make water kefir regularly. Facebook has a really good page called Fermenting Friends UK if you want to embark on the fermenting route. I'm addicted!

NICE guidelines state that if you have symptoms of an underactive thyroid, your T4 is within range and your TSH is between 4 and 10, your doctor can prescribe a trial of Levothyroxine. You could suggest this to your doctor. Here is the extract:

'If TSH is between 4 and 10 mU/L and FT4 is within the normal range

In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.'

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I am located in the USA unfortunately, but I might give that bit of FT4 info a go :) thanks for the reply. Not sure what my hospitals guidelines are like for this but doesn't hurt to try. Will also definitely be changing up my diet :) I know the change might be a difficult road but I should certainly get started asap. I wish it were as simple as my Psychiatrist piecing together my mental health with autoimmune but sadly this is not the case :(

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I thought the upper TSH limit was 3 in the US for offering treatment? Does it differ from State to State?

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Scazzoh Timeline and history of changes to the upper TSH level (including US): tpauk.com/main/article/the-...

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It just makes you realize what a joke the TSH test is when it comes to diagnosing and treating thyroid disease. The same differences exist between labs in the UK. You can be diagnosed as hypo in one area and 'normal' in another.

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Hey Sasha- do you have the option to visit doctors in other countries. Dr. Hertoghe in Belgium for example. I fled to him because of the hell i went through here in Germany.

And even though my experience has been horrific here at the very least a thyroid doctor (not a gp) would have most certainly put you on thyroid treatment. I can recommend someone here if you go for such option.

One thing that is consistently overlooked regarding the thyroid is zinc. It help t3 get into cells and it helps lower antibodies by fighting inflammation. Do some research on the zinc taste test and see what that gets you.

Hang in there. As everyone has said we all have our stories of living hell.

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I've certainly considered it, I did have the wish to go to my BF's country of Australia as they have much better healthcare regarding immune/thyroid problems but as i'm unemployed and unable to work in my current state i'm unsure if I would even qualify for a medical visa to get help elsewhere :(

If it was an option i'm most certainly open to get out of this nightmare health system and go outside the US for more optimal care.

I will certainly look into the zinc taste test :)

And thank you so much, it's actually good to know i'm not alone and certainly wish all of us were normal and much healthier :)

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I was assuming you were from UK. I fully understand your heath issue. I am also American but left in 1993 for Germany. I had dreams of moving back when I retire but with my multiple pre existing conditions and with President Moron... I've given up on that idea. Over here I'm covered till the day I die. Great health insurance here but the doctors... not the sharpest tool in the shed. But with time I'm learning to work the system. Sorry off topic.

In any case I would be happy to open my doors for you if you find a way to get access to a doctor in EU.

Why not try Canada or Mexico or at home thyroid test. Then take the info to another doctor.

Rule number one with thyroid doctors... never ever ever hesitate to fire a doctor. I change doctors like most people change underware.

It seems it's fairly easy in the US to order thyroid meds online from somewhere without an rx. Treat your thyroid without a doc. Many of us do.

Hang in there.

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we are with you Sasha, i remember beingso very very VERY ill, and my lovely family also began to think i was dotty i th ehead an dthat is so heartbreaking i know - but we know you are NOT. vitamins and minerals are so important as b12 all the B;s for the nervous system/ low adrenals, you can get some privat etests from genova-diagnostics, theyare in the usa as well as uk-- itmay have to be self help thing unless you can find afunctional doc in usa.. but you can do this, but it will take a while but tell yourself you are not dolally and when you are well you willhave yourpower back. we are all with you sasha.

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Thank you so very much for the very kind-hearted words <3 I already feel so de-stressed from reading all these lovely replies and advice :) I will most definitely be looking into private testing! Did it once before but sadly it wasn't as i'd hoped it's quite possible as ill as I feel compared to then my numbers my have risen/changed :( And yes! Absolutely I will get my life back no matter how long it takes :) have to take one day at a time, cry when I need to and remember there's always others to support me when I need it. Never giving up.

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Looking at your previous post your b12 was critically low - this alone could explain a whole bag of neurological and psychological symptoms.

The following are UK websites, but they're good. I would recommend going to the PA forum on HealthUnlocked as well, as there's a lot of knowledge there.

b12deficiency.info/what-is-...

pernicious-anaemia-society....

N.B. If your b12 levels are low compared to folate levels that is possibly more problematic than having them at similar levels. That's because they work in synch and high folate can also mask a b12 deficiency. It's worth remembering that US flour contains folic acid, which is barmy as they've left out the b12 that it works with. The well-meaning advice to pregnant women to take folic acid is also flawed, because it only really works if your b12 levels are very good (neural tubes need both). Most people in healthcare are b12 blind, I'm afraid.

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sasha never give up now i LOVE THIS WW2 MOTTO from Winston Churchill-- he said to the troops-- When you are going thru hell-- keep going!... you can do this! we are here everyday an dyou can even show this page to your family! or print it off!

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Truer words could not be more fitting for those of us here :) If only my mother supported my illness, alas she too thinks i'm rather nutty haha. But these uplifting words help me feel so much brighter :) Thank you for all the kind words, I shall not give up nor give in :)

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Worth investing in this book:

amazon.co.uk/Hashimotos-Pro...

She's done tons of research and covers everything you need to know about Hashimoto's. Good luck x

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I've gone crazy after 40 years of being hypo ~ very angry & very frustrated, so I can understand how you feel.

Stop listening to the people who are unsupportive or detrimental to your health.

Start learning as much as you can from links on here from all the people who know how to live with hashimoto's.

Do your utmost best to make yourself as well as you can by eating the right things, avoiding the wrong things, & taking the supplements your body needs to cope with your autoimmune disease.

Lots of good free advice from CK: chriskresser.com/thyroid/

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Did you know that you can order blood tests without insurance companies and doctors being involved in the US? You can deal with some labs directly.

For info and links on the subject :

stopthethyroidmadness.com/r...

Look about half way down the page.

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My son was also refered to psychiatric for thyroid - any idea what that does to a 15 year old.

My grandad in the 30's was put in an asylum!!

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I have just experienced an almost identical experience and I agree it is humiliating and soul destroying.

It's beyond belief that ( at least in my case but there are many many similar posts) Gps and Consultant are so very keen to prescribe depression / anti anxiety medication when there are so few non biased & reliable evidenced based studies that demonstrate they are an effective treatment - Versus- a wealth of solid research that the upper TSH range of 10 is way to high and should be 4 as in USA & most other countries.

This is actually very sinister dont you think?

If as evidenced on this ( and other) forums , laypeople like ourselves can relatively easily assimilate and understand the major issues relating to diagnosis and treatment of thyroid issues from a science based medicine perspective . What's preventing our GPs and worse still Consultants do the same. It's not as if thyroid related problems are a rare disease is it ?

I'm also beginning to think that the way so many of us are being so poorly treated ( physically and mentally ) is a form of sexual discrimination and possibly ageism? I realise thats perhaps a rather extreme opinion but let's face it , it does affect far more females than males and whilst all ages can be affected its more common in the older age group?

There does seem to be rather a lot of anecdotal evidence that we are seen and treated as 'mad women' ?

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