Thyroid UK
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Having trouble being diagnosed with overactive thyroid

Been to the doctors and had blood test which they say has come back as "normal" as far as thyroid is concerned! I have quite a list of problems which in themselves aren't bad but combined I am in a bit of a mess! Im always freezing cold, I am now gluten intolerant, have plantar faciitis in both feet, constantly tired, gaining weight though eating same as always have, brain fog, one min angry, next in floods of tears, eyebrows starting to disappear!! The main worry too which is getting progressively worse is the breathlessness, which is getting worse! My dr has said its menopause and depression!! I am not happy, Ive never been depressed in my life and I don't feel like I am now! I have asked to see another dr for a second opinion, does anyone have any ideas as to what I should do next?? Im happy to pay for a private blood test, would that be an idea? I have asked the surgery for a copy of my results so will post once I have got them. Please help!!!

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There's not much anyone can say until you have your results, post them and include the reference ranges (ranges vary from lab to lab) and members will comment.

Your symptoms actually sound like you are underactive, not overactive.

It would be a good idea to get a private blood test that will test all the thyroid tests, including FT3 and both types of antibodies, plus the important vitamins and minerals. It can be done with a fingerprick test or blood draw, choice is yours. Results back 24-48 hours after they receive your sample.

bluehorizonmedicals.co.uk/T...

medichecks.com/thyroid-func...

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Thank you, yes I will post them as soon as I get them. Yes I believe I am overactive, my nan had the same symptoms and my mum agrees that I seem just like she was when she was diagnosed, I think I probably will have to go down the private route for blood tests, will feel happier knowing I have been checked fully!

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I agree with SeasideSusie, you sound underactive, rather than over. Whilst many symptoms are common to both, the ones you are quoting are much, much more likely to be due to underactive, along with some that would appear to be due to the severe nutritional deficiencies that are almost universal with hypo - even with a brilliant diet! Since you have been told your results are "normal", which to a GP means simply in range, you may have trouble getting treatment on NHS.

But the best place to start is with a comprehensive test - suggest Blue Horizon thyroid plus 11 or Medichecks thyroid ultravit. Once you have results from this, post them in a new post and members can give you specific advice. Test needs to be done as early as possible in the morning, having eaten and drunk nothing but water since evening before.

Gillian

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I did mean underactive! Its my brain fog lol, i didnt even realise i had put that! Thank you 😊

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Thank you for the links too!

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Hi there. It seems that 40 years down the line since my diagnosis things haven't changed with some doctors. It seems being a woman is enough of a diagnosis to some. You are a woman and therefore neurotic, especially about your weight, tired, menstrual, pre-menstrual, post-menstrual etc. etc. Too many women are that awful word 'borderline' or even showing normal according to blood tests and left untreated. Menopause will have hormonal effects but you shouldn't be feeling cold. Do find out what your thyroid readings were and keep a note of them. Find out where you are in the scale. Do get a second opinion/ change doctor as quickly as possible. (Because the lower you go the longer it takes to recover and you can lose your oomph to fight) . I was referred to a psych clinic because I said if there was nothing wrong with me then I must be mad. I wish I had gone because mental health workers are aware of thyroid conditions! If you can afford it go private (much as I prefer the NHS) Not all doctors are ignorant. My readings say I take too much thyroxine but I'm fine and my doctor agrees. There are also FB groups.

Wishing you lots of luck!

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Thank you that's good to hear, feel like Im going a bit crazy at the moment, I am normally very chilled and don't get stressed easily but really don't feel myself! Yes I have requested to speak to another doctor and I am prepared to go private if necessary just for piece of mind if anything!

I am feeling better already for joining this group as it seems I am not alone!!

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Definitely recommend the Thyroid 11 test. I use their home fingerprick version of the test. In the past I found that although they use different lab ranges to my NHS lab, my results were in the same sort of position on both. So BH are very good. Thyroid 11 also get all the things I found doctors didn't want to do - B12, vitamin D, antibodies to name but a few.

I don't think a lot of doctors understand that you don't need to be depressed to find it extremely depressing to be constantly be told you are 'fine / within the range / normal' ( normal for who? Your next door neighbour / the lady down the street? ) and that it's the menopause and you're depressed.

I knew I had some sort of autoimmune condition for years before I was finally found to have Graves Disease. I was pretty much made to feel like a total hypochondriac/ total nutcase. I was actually told three months before I went into meltdown that 'you're needing your holiday' - I was actually needing my thyroid fixed - and badly needing that.

Fortunately I was way to old to be told it was the menopause and by the time I got a decent doctor who knew right away what was wrong it was obvious I wasn't depressed. Best of luck, your I've reached agood place here for advice.

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Thank you, yes seems very good on here, lots of people offering good advice!

Its annoying as I don't go to the doctors very often at all so wish they took more notice of the fact I know something is wrong with me and Im not depressed, its very frustrating, I am going to sort out getting another test done.

Did you just have to ask to see other doctors or did you end up going privately could I ask?

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Same here. I could never figure out how I couldn't get anything done yet I knew some people practically lived in the surgery. You've ( or I've ) really got to be feeling really dreadful to go to the surgery.

I was just lucky I got a different doctor - although I wouldn't have gone back to the 'you need a holiday woman'. I had a very near miss whilst crossing a dual carriageway in the car in the dark one night and I got such a fright. I knew I really wasn't well so first thing next morning I was at the surgery, I explained what had happened, she did lots of tests, my hands shook like mad as soon as I held them up, she tested reflexes etc but best of all - she actually listened to me. I had blood tests done the next day and the following day I came home in the afternoon and found a message on my phone saying I had a very overactive thyroid with antibodies, she had left a prescription at reception for me, made an appointment for me with an endo and would I come back in four weeks for another blood test. So within two days of seeing my GP I was taking carbimazole. I had struck it lucky, I really was very lucky.

I don't know about going privately, fortunately I've never had to. Also I've never told my doctors I use Blue Horizon but I found it very satisfying to go to appointments knowing what the doctors would have found out from the tests they had done.

If you are looking for thyroid patient friendly doctors send an email to Louise at ThyroidUK.org.uk, I think TUK have a list.

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I had tests for menopause which came back negative, that was when they discovered my thyroid issue! I saw 4 different GPs at the surgery before I settled on my current one, she isnt perfect but does at least listen and is willing to be persuaded by a well presented arguement, dont stick with a bad one.

The way you test is very important as it can alter the results enough to mean the difference between getting diagnosed or not. Always the earliest possible test and nothing but water until afterwards, also dont take any supplements for a good week if you are having initial vit levels taken so you dont get false high results. Some thyroid tests use a biotin assay so always leave any multi vits or bvits off for a few days prior to thyroid testing to avoid skewed results.

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Got blood test results not sure what to post?

Serum TSH 0.98 mu/L (0.35 - 3.5)

Serum free T4 14 pmol/L( 8.0 - 21.0)

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If you're willing to pay Thyroid 11 would pretty much everything you would need tested to see what your thyroid (and everything else!) is up to.

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Yes im more than willing just to get it sorted.

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Thank you banging my head against a door with my Drs he listens but doesn't unserstand thyroid function and testing - will look at ordering this today thank you

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They seem pretty much normal but T3 needs checking.

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Having antibodies checked tomorrow, is T3 something that I can get checked through drs or would this mean a private blood test please?

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Dr I spoke to yesterday is arranging a blood test to check antibodies? Said that was another check of the thyroid??

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Yes, that's correct. Positive antibodies will confirm autoimmune thyroid disease aka Hashimoto's. However, the NHS tends to o my test for one type - Thyroid Peroxidase (TPO) but there is another type Thyroglobulin (TG) which the NHS almost never tests. You can be negative for TPO but positive for TG so it's important to test both.

The Blue Horizon Thyroid plus Eleven home fingerprick test incudes both types of antibodies and the important vitamins and minerals.

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Hi will this eleven plus cover all thyroid issues like issues producing enough T3 etc? My gp said they test T4 and mine was just in range but very low vitamin D which I've since read thyroid can cause this deficiency

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Yes, the thyroid part of the test covers TSH, FT4, FT3, TPO antibodies, TG antibodies, then the vitamins and minerals tested are Vit D, B12, Folate, Ferritin.

bluehorizonmedicals.co.uk/t... and same test with a different company:

medichecks.com/thyroid-func...

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I'm having the same trouble except I think I'm underactive - just been to the doctors who has referred me to a chest specialist for chronic shortness of breath - I've got plantar fasciitis aswell! Having injections for that but beyond that - nails are brittle, fatigue, sleep problems, temperature issue, generally red hot all the time( can't regulate temperature) face sweating severe, blurry vision which one day is fine one day not .. body temperature averages over three weeks 34.1 - 35.4 .

I Had to leave my job because I couldn't cope 😕 Asked my dr outright today could this be thyroid - he had no idea whatsoever and he then referred me to a Chest specialist 🙈For my cough and shortness of breathe ....I'm going to get private tests done for all thyroid conditions and pituary gland because my friends family etc are getting on at me because I just suffer and nothing gets done ... I'm struggling with my weight big time aswell currently the biggest I've ever been ...I feel like a hypochondriac

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I feel your pain! All my symptoms have been happening over several years but now you combine them it screams out underactive thyroid yet my docs wont listen its incredibly frustrating.

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Same for me gradual build up and last 18 months I've been unwell, tired , short of breathe severe, constant cough, mucus lump in the throat etc ..temperature problem is horrendous and menopause test negative ....brittle nails ( I've lot two toe nails just came off ) and now plantar and cramping in my legs ...my gp doesn't seem to know what to do so he's sending me to the chest specialist ....I'm going to pay for private tests to rule thyroid or confirm it - wilsons temperature syndrome theory is me to a T but it's not recognised my gp said I don't look like I'm underactive thyroid 🙈 ... private it is then - my gp only test T4 that's it

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I feel your pain too, sounds like you will have to take responsibility for things if you doctor won't. I started using BH tests because my T3 was never tested in all the time I was being treated yet they were talking about rai should I relapse! How can they zap your thyroid without having a complete picture of what's going on I asked myself? That and the fact they did all the vitamins and minerals I got fed up having to beg for - and still not get - well I got my B12 done, it barely scraped into 'the range' so the doctors were happy, vitamin D? ' oh that's just fashionable these days, If you can probe to methat there's anything in it then I'll test it for you!' Said the endo. Think that's when I gave up and treated my own B12 and vitamin D. Fortunately I had no problems with ferritin- well it's very high but I've got inflammatory arthritis which probably causes that - and my folate wereok.

I've been totally gluten free for almost two years and that has made a real impression on my antibodies so I tend to avoid the doctor these days. Good luck with it all, you'll know more than your doctor before long, great that your friends and relatives are right behind you. Just what you need.

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It was the blank expression when I asked him could this be thyroid- then said NHS won't test T3 or free function so it's a waste of time... the more I compare on this group the more I'm convinced it's thyroid Ive never been like this before ...family and friends pushing me to get help - I used to be able to go out dancing till early hours - couldn't think of anything worse right now ...yesterday walked 5 mins if that and had to stop to catch my breathe it's scary ..plus my feet burning with this plantar problem - 100% going private ...this group is fab

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OMG you sound exactly like me!! My feet are in agony all the time, Ive spent a fortune on special insoles etc but has made no difference at all! My breathing is the same, Ive always loved my exercise dance classes but at the moment I just cant do them because of my feet and breathing! Plus Ive got no energy!!

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You've made me feel human again ☺️ Dr is clueless so Im going to order the private blood tests next week and see if they show anything ..gp sending me to chest specialist regarding the shortness of breath and injections for my get - I feel it's not targeting the cause only the symptoms - I barely go to the Drs I've been suffering for too long now ...good luck to you hope we both get some relief soon xx

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Yes you too, wish drs would listen to us we know our bodies and surely we are helping them so they dont waste valuable time and money sending us to get numerous tests appts etc that arent necessary! Basically my dr wants me on about 4 different medications for the various problems rather than getting the correct diagnosis therefore only taking one drug to cover the lot!!

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I agree - mine doesn't have a clue and because I'm sweating and hot more then I am cold he doesn't understandwhat's up 🙈 Crazy I'm feeling in my 80's at the min lol

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Im more disappointed that i have a young female gp who i thought would be more sympathetic and keen to investigate further!

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I saw a middle aged Asian dr last week who said I was wasting her time ☺️ And can't come with more then one symptom....I complained and yesterday saw my usual dr who is a good listener but he doesn't understand thyroid conditions and if nhs test is in range that's the end of it - I've just had my big toe nail fall off this morning my nails are becoming brittle - my gp if Private tests show anything he will then listen - he's black and white ....it's such a battle / I've always been genetically larger lady so I know it's not down to my weight

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Funny you say that, my nails keep peeling at the moment and my big toe has been really painful and looks bruised yet my other one is fine? I find it so frustrating when we clearly know there is something wrong and all points to thyroid but feel like we are not being listened to!!

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I too have been gluten free for about a year and a half now, do you think that will affect my antibodies when I get them tested?

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Your antibodies ought to come down, test before you start then test again and see what happens after three or four months.

I started doing it as an experiment because I had read that a lot of hypo people recommended it - I was hyper - anyway I did it 100%. If I couldn't get GF then I didn't eat. Got very crafty about the sort of things I could always get hold of if I was out and didn't want a meal - nuts, tomatoes, chicken pieces, fruit etc, were my stand by snacks, snacks were much more difficult for me than proper meals out.

I could have had a jacket potatoes but I was also eating a low carb, high fat diet to get rid of T2 diabetes and jacket potatoes really spiked my blood sugar.

Anyway, it started off as an experiment and I tested every three or four months and even after my first test I could see the antibodies reducing so after a year there was such a difference that I wouldn't eat anything with gluten now. It isn't difficult to cook or to eat out, most restaurants are really clued up on GF and it isn't hard to do yourself, I had already cooked GF for friends and events I catered for so I knew what to do.

If you want to try GF I joined the Coeliac Society to get their food 'bible', it is a wonderful little book that lists pretty much every food / ingredient you can get that is GF, you also get a magazine and online support. Worth joking them if you decide to give it a go.

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I have been eating gluten free and have noticed that eating out is getting much easier, do you think that my antibodies will not show anything as Ive been eating gluten free for over a year??

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Hi,

Eating out is amazing nowadays. Ive got a friend who is Coeliac and I asked him if it bothered him that I was gluten free to see if I could reduce my thyroid antibodies and he said definitely not because it was people like me who we're making restaurants cater for people who are GF and making it it possible for him to have so much choice.

I know some people who are tested coeliacs who really don't like it. My rheumatologist offfered to test me for Coeliac at last visit to him - he also thinks I've got Sjorgens although I don't test positive for it which seems ???? - but I don't want to have to eat gluten for the test, the important thing for me is not eating gluten.

I've still got some antibodies but I started off in July 2015 - I can't face typing out Anti Thyroid Peroxidase Abs and Anti Thyroglobulin Abs for every result so I've listed the results in the same order each time.

Like you can say they've generally reduced - the Peroxidase wavers a bit for some reason but the Thyroglobulin comes down steadily.

Not sure if it probes that GF is reducing my antibodies but I've gone totally GF and my thyroid antibodies are coming down so that'll do me.

Must do then again one of these days.

If anyone else (more knowledgeable) is looking at these had other ideas of what's going on then let me know I'd love to know.

July 2015 - tested before I went GF

Anti Thyroidperoxidase Abs 31.3 <34

Anti Thyroglobulin Abs 401.0<115

Dec 2015

9.7 <34

205.9 <115

Feb 2016

8.2 <34

145.6 <115

July 2016

<5 <34

104.8 <115

November 2016

12.6 <34

51 <115

May 2017

9.2 <34

40 <115

Hope this answers your question :)

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On checking my blood test results again today I noticed that my serum globulin level is 36g/L range is 21.0 - 35.0 would this be linked to my thyroid does anyone know? Having test for antibodies today too.

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