HELP!!! Possible thyroid?! at my wits end!!!

Hello.

I feel like am going crazy and no one is listening to me!!

A couple of years ago i noticed my thyroid was rather large, had all normal thyroid blood test done, everything came back normal. Doctor sent me for a ultrasound just to make sure, the specialist just said all is fine its just a swollen thyroid.

I continued to feel ill and run down for years. Fast forward to July last year when i couldnt take it anymore, i went to a festival and couldnt stay awake past 9 pm ( i am 25).

Went back to the doctor she did all the tests again, all that came back was servere vitamin D def.

My thyroid came back as normal even though the swelling has never gone down.

My syptoms are:

-Period has changed from 7 days to 2/3 days but extremely heavy

-swollen thyroid

-weight gain

-dry skin on face

-extreme tiredness

-butterfly red patch over nose and cheeks

-losing hair

-always cold feet

-chronic constipation ( 2 weeks at a time)

-loose bowels if not in constipation time

-dizziness

-tinnitus in one ear

-Vitamin d def

-rib pain

-forgetfulness

-brain fog

-wake up feeling tierd

-new moles appearing

-eyebrow thinning

-angry/anxious all the time

-swollen lymph nodes (doctors not worried about them)

-tongue scalloping

And loads more. I went to the doctors yesterday again, but her words were what do you want me to do about it? But the second i mentioned my tinnutis she instantly assumed a brain tumour (which i know it isnt)

Please please help me!!!

23 Replies

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  • Cazzie91 Have you got any current test results? You need

    TSH

    FT4

    FT3

    TPO antibodies

    TG antibodies

    Vit D

    B12

    Folate

    Ferritin

    Your symptoms could be indicative of Hypothyroidism and low levels of nutrients.

    You won't get all those tests done by your GP - who seems less than useless anyway if she's asking what you expect her to do about it - so you might want to do a private fingerprick blood test which covers everything

    bluehorizonmedicals.co.uk/T...

    Post all your results with reference ranges for members to comment.

  • Welcome to the forum, Cazzie91,

    Can you get a copy of your thyroid results and ranges and your vitamin D result and, if tested, ferritin, iron, B12 and folate results and ranges to help members advise.

  • SeasideSusie Clutter i am at the doctors tomorrow for more blood tests with regards this apparent brain tumour. I will get the nurse to print them out and will post them. Thanks!!

  • Cazzie91,

    Put them in a new post as updates get overlooked.

    Tinnitus is often due to low thyroid hormone or low B12.

  • without knowing exactly what tests were done and what the results were i firmly believe your doctor is talking rot

    "normal " means absolutely nothing

    we need results for

    thyroid antibodies

    TSH

    free t4

    free t3

    ferritin

    folate

    b12

    vit d3

    i would want to ensure that Central Hypothyroid as opposed to Primary Hypothyroid has nbeen checked for

    that pernicous aneamia has been excluded

    that auto immune hypothyroid has been tested for

    also be very very sure you do not cook in aluminium or non stick coated or foil cookware

    that your water supply is not treated with any form of alum or aluminium or flouride

  • Hi!

    pernicous aneamia has been ruled out as my mum has that and chrons disease. So all those tests have been done.

    I will ask those questions and get a print off of my results. I asked about my antibodies yesterday, she questionned me why i was interested in them as if i had a thyroid problem it would have shown in my other thyroid tests so they dont test for it!

  • your gp is wrong

    if you have Central Hypothyroid and all thats bedn done is just TSH it simply will not show it ...your GP likely only knows about primary hypothroid which is very very different

  • You still need to post your vitamin B12 test result with the range.

    The reason for this is the majority of NHS GPs known SFA about nutrition unless they have purposely chosen to do post-qualification training in it. Those that have then don't tend to stick around and work for the NHS as they cannot prescribe the things they want for patients without the threat of being reported by colleagues and disciplined.

    You will find posters on here who have vitamin B12 problems themselves plus those on the pernicious anaemia society on healthUnlocked know far more about vitamin B12 than the average GP.

  • Ooo okay. I will post everything that has been said in this post.

    Hoping the nurse just prints it off without any questions!

  • If the nurse or whoever asks why you want it just say it's for my own records.

    If they try and be difficult saying you can't have it remind them that under the Data Protection Act 1998 you have a right to your own medical records.

    They are only allowed to say they need to ask the GP first and charge you. They can't refuse to give you your test results at all.

  • Oh and say your mum is interested in your vitamin B12 result if talking to the nurse as due to having PA she knows a lot about it.

    Sometimes talking to people gets you what you want with less hassle than going all formal. ;)

  • Mine made great fuss first off and said would have to ask Doc. I said: why when l am entitled to them. They gave me pages - without charge. l was going to see a Naturopath whose book l had read until they told me it was £170 and £85 half hour. Then l realise there cd be endless blood tests which NHS wnt do and can add up to hundreds. l told them l was on small income but they wdnt help. Today's mantra: Medicine is a Business!

  • SeasideSusie thanks!! I have just ordered the test. Will my GP accept these result? Or will they overlook them? I have very little faith in my GP haha

  • Depends on the GP plus how arrogant and ignorant they are.

    My current GP practice accepts private tests due to the fact that in my area you are told to get vitamin D tested yourself once a year if you have ever been found to be severely deficient.

    However you need to ensure you use a provider who is recognised as having good standards - Blue Horizon falls into this category.

    Other providers frequently mentioned on here are City Assays for vitamin D testing only - they are Sandwell and West Birmingham NHS hospitals - and Medichecks.

    BTW even NHS hospitals sometimes don't accept tests results from each other. So it's not even GPs who think that no-one else can do a test properly.

  • Oh and when you do your test make sure you have fasted over night for 12 hours - only drink water in that time. Take the test as early as possible in the morning as TSH is the highest then.

    In addition avoid drinking alcohol 24 hours before, exercising strenuously and if you are taking any multi-vitamins or supplements stop now. (Though it will still skew your vitamin B12 results. )

    Every time you do a blood test after this even if it is for your GP repeat the above. You need to be careful with GPs as some of them spring surprise tests on people, so if your practice does blood tests find out the cut off time for collecting the samples that day and try and get an appointment after that time.

    In the case of supplements stop about a 3-7 days before. The reason for this is that if end up having to take B vitamin supplements you don't want your result to be over the range otherwise your GP will freak out and tell you to stop taking them.

  • Thanks!! I dont really drink alcohol anymore as since all of this started I have got an intolerance to alcohol. My face becomes red and i feel all hot and strange, compared to when years ago i used to drink anything and everything.

    I will also stop taking all my supplements, which my mum provided to me as she has been that worried about me!!

    Thanks for all your help!

  • Hi cazzie91it dose sound like it could be thyroid problem but can't really say without seeing test results, but there are a couple of symptoms that lead to me to think that it could be something else! butterfly rash over nose and checks, swollen lymph nodes ,new moles, I would try googling butterfly rash over nose and cheek's and see what comes up as this type of rash is linked to lots of different autoimmune diseases, hope this helps, Good luck at docs tomorrow x

  • Lupus is the first one that springs to mind.

  • That's also what I thought, was reading on net couple of days ago about different autoimmune diseases and that symptom of butterfly rash stuck in my mind, it's quite a rare disease.and difficult to diagnose.

  • She has ran some autoimmune tests this morning and one of those was for lupus. Will post my previous blood test tonight when i finish work

  • l was 25 when l first asked for help and been ignored by GPs x 5 - dont let it happen to you. l believe now we are entitled to ask for a referral (Consultant in Endocrinology or Thyroid clinic) and certainly a second opinion. Everywhere l look now says the diagnosis is often missed - as l know only too well from a lifetime of it. Change GP if you have to - get up steam before an appointment and decide you wont leave till you get a referral. The blood test limits set are not 'right' for everyone- we are all individuals and l was always on bottom figure for T4, for years but it never occurs to GP there is something wrong. l have very luckily got to a Thyroid Clinic with a delightful young Consultant who is open minded - and doing more tests Had to put on a strop before Christmas as knew my GP didnt believe me as l looked too well. Some GPs will gang up in same practice. Dont give up!

  • I am not giving up anytime soon....i an 25 and shouldnt feel like i need to be having naps in the day and then going home when all i want to do is sleep. She has decided to proceed with a brain MRI when all i want is a set of blood test ran, i dont actually want to waste the NHS's money.

    I have also ordered my own blood test when i get the results from them i will post them

  • lts a tricky situation and when you are younger. I am pretty cross and almost in shock to get a part-diagnosis from a Consultant so nice - when the situation has almost ruined my life and career- with tiredness and extreme PMT. As you say do keep on. Do post your blood test results. In my case not much showed up as previous GPs never ordered the right test - dont know what its called but must be far fuller hormone test which included Cortisol and turns out to be the problem. More work to do yet. And nothing like these web pages or other public news existed way back. Very good luck to you.

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