help needed: HI I have an underactive thryoid... - Thyroid UK

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help needed

healthmatters1
healthmatters1

HI I have an underactive thryoid for 25 years. for many years it was controlled with thyroxin but hasnt been controlled since 2015 havign had about 9 tests and only 2 were normal for probably a breif time. the last 2 tests i have had june 2018 and sept 2018 are abnormal for my TSH the gp always writes N/A to the T3 and T4 He tests me every 3 to 4 months after altering fdoasge but it doesnt help, i saw him yesterday but he dismissed the way i am feeling i work 16 hours but struggle due the symptoms ive underactive thyroid and im 60 years old

he told me to lower the dose and be retest in 3 to 4 , i asked to be refered to a specialist in this feild but his reply was ' they wont want to see this sort of thing in their clinic ! saying it was marginal, chances are it wont be next test and its just on going as i have my readings from last 3 years and it varies greatly. i struggle finnacially as cannot work more than i do , but im not entitled to claim anything , i consider it a disability but it seems no one else does. the ususal symptoms confusion poor concentration brain fog fatigue etc to name just a few . i take thyroxin 75mg daily but have been on as much as 150 and sometimes daily amounts alternated , for the last 3 years. to try and get the level right. Is there any finnacial help anyone knows of when its effecting you ability to work , as i say i do work part time but i know i couldn;t physically manage more any one else been in similar situation i live on my own .

16 Replies
oldestnewest

Hi

Could you add some blood test results to your post - say the last two or three sets? Give result followed by ranges in brackets and any comments by lab or GP. Also give dates of tests and dose at time of test and dose change (if any).

You need to ask GP for blood tests for some nutrients levels as you could have deficiencies that need prescribed supplements. Ask for:

Vitamin D and Calcium

B12 and Folate also

Ferritin.

When did you last have Full Blood Count, Kidney (U&E) and Liver Function Tests?

Have you ever had an Ultrasound scan of your Thyroid?

Have you ever had any tests to check your Adrenals?

Have you ever had Thyroid Antibodies tested (do you know if you have Hashimoto's Autoimmune Thyroiditis? ) if not then also ask for :

TPO (Thyroid Peroxidase Antibodies ) & Tg ( Thyroglobulin ).

If GP refuses, then say that - as you have symptoms you wish to see an Endocrinologist urgently. You are not stable so need medical attention until you are. ( full Diagnosis & appropriate treatment).

Keep pestering - we shouldn't have to keep fighting but must.

Financial help :

Google search Council Tax reduction and see if your income & savings fall within the limits for some help. If in rented accommodation then look up Housing Benefit also. Or, phone your local authority and ask if any point you applying.

I could suggest applying for PIP but it is a long drawn out process and can wear you out, then be fruitless - so best to get advice from some organisation such as Scope first.

I've heard of Tax Credits but don't know about them so you could Google that also. You could try CAB if you have a good one in your area or Age Concern as they help people over 50.

All the best. (Keep posting )

thank you mary xx

I've just added to my reply (re financial help available )

Your welcome.

God Bless xx 🐥

thank you so much mary i appreciate all youve sent me and i will try the ones i havent , dont qualify for council tax or housing been down that route i will try the scope and age concern and citizens advice bless you xxx

X

I'm guessing you drive. If not, you will know that if you live in Wales you qualify for a free Bus Pass which can be used any time of day? In England you have to wait till in receipt of your State Pension (long way off for you, sadly). Unless, I believe, you live in London. Don't know about Scotland or Ireland.

Would it be worth applying for an HC2 Certificate for partial help with Dental charges and glasses ?

I hope you had ALL your prescriptions free before you were 60 (the last 25 years) ?

hi mary thank you again yes have a hc2 certificate and free prescriptions n im ot in wales unfortunatley for the free bus travel i live in staffordshire x

I am surprised that you are not entitled to just a small amount of Council Tax. Now that you are 60 I wonder if the Applicable Amount might be higher?? Don't really know. Would it be worth checking figures again with one of the independent agencies? What's CAB like near you ? Or phone Age UK or Scope ?

All the best with that. x

no i dont drive id never master that now x

SlowDragon
SlowDragonAdministrator

Politely insist on GP testing vitamin D, folate, B12 and ferritin in addition to TSH FT4 and FT3 plus both TPO and TG thyroid antibodies

If he refuses to test, then say you have no option but to insist on referral to endocrinologist who is thyroid specialist

Email Thyroid UK for list of recommended thyroid specialists, please email Dionne at 
tukadmin@thyroiduk.org

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

It's not uncommon as we age that Levothyroxine stops working as well. It can be low vitamins or poor conversion of FT4 to FT3

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

thank you slow dragon x

You sound much like myself. I was doing well on levothyroxine for around 20 years and then started suffering many symptoms again, the worst was fatigue and muscle aches/weakness.

My Dr was very little help to me and only wanted to give me anti depressants for menopause. I rejected those!

With much help from this forum I discovered my vitamins need some help (in range but not optimal). My GP agreed to test these but decuded no action necessary.

I went gluten free and saw a huge improvement within about a month.

I had my thyroid panels checked by medicheck (they have reduced price offers on Thursdays!)

I discovered I was converting to T3 badly and sourced my own. After about 3 months on T3 combined with T4 I am a new person 😊

As for your finances do you receive working tax credits? Working 16 hours you should be able to apply.

I hope my experience helps you,

Best wishes.

SlowDragon
SlowDragonAdministrator in reply to seekingjenna71

My story virtually identical. Now strictly gluten free, lots of supplements and tested positive for DIO2 gene, now prescribed T3 on NHS. Complete transformation.

Couldn't have done it without all fantastic help on here.

More on my profile

thank you for you reply and help xx

thank you for you reply all very helpulxx

wow thanks for info .,. ive never really understood this T3 and T4 on my notes there is T3 and T4 but says N/A this is of blood test results for TSH which are listed what is the t 3 and t4? am i right in thinking a basic blood test for thyroid function thaat they wouldnt necessarily be done

what supplements would you recommend

thanks xx

SlowDragon
SlowDragonAdministrator in reply to healthmatters1

Suggest you read up as much as possible about thyroid

Link about thyroid blood tests on the home site of Thyroid UK, who run this forum

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

NHS often refuses to test FT3 or both TPO and TG antibodies or all necessary vitamins

Request as much as possible from GP, but likely to need some private testing of ones not done by GP

Literally thousands on here forced to test privately

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Always test first on vitamins. You have no idea what you need to supplement without testing

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