Welcome Newbies! some FAQs (as previously posted)

Welcome! Here's some FAQs and links which may be helpful....

1). “OK I googled… now where am I?”

This is the support site of Thyroid UK. TUK is a registered charity formed in 1998, run by volunteers to help sufferers of Thyroid disease - this support site is part of the HealthUnlocked community – ‘Support and answers for patients, families and carers’. (‘All the tools a GP surgery needs to get patients' opinion and feedback)’.

Here’s the main TUK site for info….

thyroiduk.org.uk/tuk/

2). “I’m not sure if my symptoms are Thyroid related”

here’s Hypothyroid & Hyperthyroid signs and symptoms to check (Hypothyroid tends to be more common).

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

It is a common disease (affecting more than 5% of the population) usually autoimmune (strangely GPs tend to leave that info out as it makes no difference to treatment) so you can have some symptoms from both sets (I do).

3). “But I was told I have ‘normal’ blood test results - can I see my tests?”

‘Normal’ means your results fall within the lab ranges –but if you felt normal would you be here? Please read up on tests….

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

You have a right to see your blood results (ask for a print out) and your records.

nhs.uk/chq/pages/1309.aspx

However, not everything shows up with blood tests, but it’s a start.

4). “How can I help myself?”

First check your diet - please remember to eat regularly & well! (may seem obvious but gotta be said!) And read up– knowledge is power! (sadly docs seem to be wary of the big bad web – but it’s here to stay! And I believe folks usually can suss out daft advice).

Any info here can’t replace your visit to your GP, remember - we are just fellow sufferers and not medically qualified.

5). “Can vitamins/supplements help?”

Yes – vitamins are vital minerals ‘essential for life’ – ask for tests for the ‘fab 5’ first - check deficiencies in irons, folate, ferratin, B12 & Vit D – they have similar symptoms of fatigue etc. & must be at least above mid range to feel well. Thyroid problems go hand in hand with deficiencies – so well worth eliminating them first.

en.wikipedia.org/wiki/Iron_...

pernicious-anaemia-society....

vitamindcouncil.org/

6). “I’m not diagnosed, what can I do?”

Apart from screaming in frustration...TUK has loads of info on Thyroid problems which you can take to your GP. Some just aren’t clued up & symptoms can mimic other things.

thyroiduk.org.uk/tuk/diagno...

and there’s a little book in most Chemists by Dr Toft called 'Thyroid Disorders' (BMA Family Doctor series). Cost c. £5 (also available on the TUK site, amongst other books).

or you can ask for an antibody test to confirm your Thyroid problem e.g. TPO Ab.

or ask for a referral to an endocrinologist (you can email Louise for a list of Endos/private doctors louise.warvill@thyroiduk.org)

7). “I’m diagnosed and GP has prescribed Levothyroxine (T4) but I still feel unwell.”

Well it’s a start to feeling better - around 85% of hypothyroid sufferers find Levothyroxine (T4) suits them fine (so they are unlikely to be on this site!) - have a look around....

~ a starting dose is usually prescribed and you should go back to your GP after about 6 weeks (this may vary e.g. full replacement if you have had a full Thyroidectomy)

~ are you on the right dose & taking it every day? First thing with water only? not with milk & away from breakfast? (I know breakfast is tricky – too busy sorting out the kids first & you forget yourself?)

~Some folks find it’s better to take meds at night, or a split dosage. If you have stomach or other problems then it may not be converting to the actual hormone (T3) for you cells to use? The right dose may take awhile to find & gives another meaning to patient doesn’t it? However some folk find a different brand suits them better - one pill doesn’t fit all - ask your GP or pharmacist about alternatives.

thyroiduk.org.uk/tuk/treatm...

Do us a BIG favour & don’t name or post links to adverts for on-line Pharmacies selling prescription medicines - yes we know they’re out there and some GPs won’t prescribe what you want or need – our suggestion is try to find a GP or Endo who WILL or perhaps ask for a private prescription. You can check with your pharmacist if others in your area are prescribed alternatives to T4.

Guidelines healthunlocked.com/thyroidu...

Please check the guidelines –everyone is welcome to have their say (within reason) we really don’t want to delete things, and swearing upsets people – you can click under the dodgy post to report it to Admins. There’s also a feedback button for site problems (lightbulb bottom right)

Search box – perhaps your question has already been asked?

Sorry - at present we do not have the facilities to put a ‘Newbie’ or ‘FAQ’ tab up on the Top bar – hopefully this will happen in the future!

This was compiled to help fellow sufferers – if just one person is helped that’s great! Please respect other members and the fact that this support group is run by volunteers, to provide a platform for members to share useful information. I hope you can find some answers here!

Best wishes Jane :D

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8 Replies

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  • Thank you so much, this is really helpful :)

  • That's very helpful.

  • Thanks Jane. :-)

    Louise

    xxx

  • Thanks Jane :-) I am new to this site and already found it extremely useful. I've found a lot of my niggling symptoms maybe thyroid related - which is re-assuring. As now I can go back to my doctor with a list of intermittent symptoms and also a possible solution to them. Eg: blood tests for vitamin deficiencies and perhaps a change of medicine from T4 to T3 etc.

    This site is brilliant and I am so pleased I stumbled across it. I thank each and every one who runs it and also other fellow sufferers who contributes as It is an valuable source information. Maybe the professionals will be able to use all our information to understand and treat thyroid disease better in the future. I will certainly be telling my doctor about it and recommend she looks in and hope she advises her other thyroid patient to join.

    Thanks again for brilliant site

    W3ndy2159

  • W3ndy2159 thank you for stumbling and your kind reply - if we can help just one person that is fantastic!

    I sincerely hope some GPs and Endos will spare the time to read members' comments, a little change is well overdue.... education is the key.....

    we have a 'My health' section to collate problems too,

    I hope you find a supportive GP to make you well again. Jane :D

  • Thanks Jane :-) already found the 'my health' section. It's amazing how many symptoms seem to be thyroid related. Regular thyroid blood test due next month and I will be asking for vit d vit b12 folate iron/ferritin and hopefully adrenal test too. (Any thing else I should ask for?) I'll post results on here for some explanations. Hoping they show up something then at least I may feel 100% well again and maybe lose a couple of stone.!!!:-) :-)

    Thanks again for a brilliant site

    Wendy

  • Ooooh thank you this is fantastic. I hadn't noticed a'my health' section and thanks to the Aspergers and ADHD I need something like this post to 'channel' my research otherwise I hyper focus myself to days of sleeplessness and loss of any ability to function in anything else! This sort of intensity needless to say exhausts me and the negativity of that feeling makes me crash like a computer stuck in a loop! Then I have all the 'thyroid' symptoms but never know whether to trust my perception of them or put them down to some sort of over exhaustion and anxiety.

    I am very new but have learnt so much already and really enjoy reading the experiences of people!!!

    Thanks to all. Aurora :)

  • Have only been here one day and the support is great and such lovely people xxx

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