the consultant doesnt believe me

[nausicaa98]

I had half my thyroid out in '08 due to complications with a nasty bout of flu and everything was fine until four years ago.

in october of 2020 a routine blood test showed my had the beginnings of subclinical hyperthyroidism. it was monitored but aside from a faster digestion, lighter periods and mild agitation, it was ok.

The following year the problems happened again only in september and stronger. I tried to see a consultant but had to go private. the consultant looked at my blood results.. listened to my list of symptoms and promptly told me it was all due to my autism and suggested breathing exercises.

last august it started up again with daily migraines, high levels of agitation, double vision that didnt stay still, gaps in my vision, dry eyes constantly hungry and insomnia.

I saw the consultant again last september and a brief examination found a nodule which he has ignored and at my last appointment completely disregarded my symptoms and test results. Now its july and its starting all over again and no one seems to believe me or be willing to do anything.

each year it starts earlier and finishes later and, according to my maths, within two years it wont go at all.

I take carnatine, zinc, coq10 and magnesium glycinate ( for the migraines)

can anyone suggest anything to help as i genuinly believe the nhs will not help me with this and i'm worried about it.

thankyou

[GlowCoach Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.

[nausicaa98 in reply to GlowCoach]

The hospital won't do a test. They say it's not justified

[Kimkat in reply to nausicaa98]

I get my own tests done through Medichecks, the NHS won’t test T3 so you’re better getting it done yourself

[PurpleNails Administrator]

Welcome to forum.

Do you have copies of or online access to your results?

Are you currently on any replacement or anti thyroid?

Have thyroid antibodies been tested? Were you previously diagnosed with Graves? Toxic nodule? TSH can be unreliable if previously hyper.

Migraines are associated with abnormal thyroid, doctors don’t seem to know this. Your other symptoms are associated with hyper levels, but even classic hyper symptoms can occur with hypothyroidism too. So FT4 & FT3 levels must be tested.

Has a specialist accessed your eyes? I found NHS unhelpful with eye issues until optician carried of assessment & wrote letter of referral. Using preservative free drop or gels at night can be helpful.

[nausicaa98 in reply to PurpleNails]

My local NHS completely failed to diagnose blepharitis in my eyes and all they had to do was a physical exam. They certainly won't manage diagnosing anything thyroid based especially as they think it's all in my head

[PurpleNails Administrator in reply to nausicaa98]

Has anything been tested?

If you had previously thyroid surgery there’s strong argument for regular thyroid checks.

Keep pushing for thyroid test. Is using a private blood testing company an option for you? Often fastest way to get a complete picture. String case to repeat investigations if abnormality found.

[nausicaa98]

Yes. I used to get twice a year checks but COVID stopped all of that and it never got going again. Not only is a private blood test easily and option but I'm currently looking for a private appointment as well.

[PurpleNails Administrator in reply to nausicaa98]

Thyroid UK has compiled of private GPs & Endocrinologists. You can obtain list by contacting Thyroid U.K. either by emailing [e-mail] or using this online form thyroiduk.org/about-thyroid...

You can also do a specific post asking members if they recommend an endocrinologist & area you can travel to. or if you have a specific doctor in mind you can post & ask what experience others have had. Replies must be by private message only and the post will be closed to replies as discussion on forum is not permitted.

Have full blood test results complete before attending any appointment.

If you post results on here we can likely interpret & recommend exactly what to discuss with dr.

[GlowCoach Administrator in reply to nausicaa98]

Its not clear if a private blood test is or is not an option. If the NHS won't test then you can.

Some companies you can pay extra for a blood draw by a technician or there are finger prick tests you can do at home. Always test at 9am or earlier, fasting with no biotin containing supplements fr 4-7 days before the test.

Get TSH, FT4, FT3, antibodies (TPO & Tg) plus ferritin, folate, B12 & D3 tested and start a new post with results for comments.

[pennyannie]

Hello Nausicaa and welcome to the forum :

I would have thought living with half a thyroid would have eventually led to your being diagnosed with hypothyroidism and prescribed T4 - thyroid hormone replacement - Levothyroxine.

Do you remember having thyroid antibodies run back in 2008 - and being told your thyroid was overactive - or thyrotoxicosis - or had Hashimoto's or dealing with Graves Disease ?

To say anything that makes any sense, at this point in time, we do need to see a full thyroid blood test to include :-

a TSH + Free T3 + Free T4 reading + inflammation, antibodies and ideally a ferritin, folate, B12 and vitamin D - results and ranges.

Many forum members, myself included, have been forced into getting these crucial blood tests run for ourselves as the NHS seem unable to help:

I now just run the above blood test yearly and arrange for a nurse to draw my blood at my home which is more expensive, but the least stressful option for me.

Just start a new post with all the results and ranges and we can talk you through what this all means and suggest your next best steps to get treatment -

Thyroid UK - the charity who support this forum - also hold a list of patient to patient recommended thyroid specialists and endocrinologists - both NHS and private - so maybe contact admin @ thyroiduk.org and have the list to hand for the 2nd step if nothing is forthcoming through the NHS.

P.S. Does this private consultant run blood tests - do you have copies of any results/readings - run by him as we are now legally entitled to copies of all our medical records ?

[nausicaa98 in reply to pennyannie]

I have all the results the GP asked for saved on my pc.

[nausicaa98]

I had a horrible cold and a few weeks later my energy levels plummeted. I had a blood test and it showed hypothyroidism. They did a few more tests and then the goiter formed, they decided to remove half the thyroid.

Six months after surgery all was back to normal.

[pennyannie in reply to nausicaa98]

Ok - so you had a goitre back in 2008 and why you lost 50% of your thyroid.

With only half a thyroid many people find they become hypothyroid and need to take thyroid hormone replacement within around a year or two after a hemi-thyroidectomy.

You say you were regularly monitored up until a few years ago -

were these readings just a TSH which is commonly the only measurement taken in primary health care - or did you have any TSH + T3 + T4 readings / ranges there ?

Do you have any results / ranges from the consultant you are seeing privately ?

Please make sure you use the reply button within the post you are replying to and their name comes up in print in your reply -

as then they notified they have a message - otherwise they are not aware you have replied to them - and may not ' look back ' as this forum gets very busy and we don't necessarily have time to come and reread what we have already replied to :

[humanbean in reply to nausicaa98]

We need some numbers from testing. Could you copy them into a reply, please. We need the results and the reference ranges. Without numbers we're just guessing.

It isn't something that many people are aware of (unless they read thyroid forums), but symptoms of low thyroid hormones might produce symptoms that are surprisingly similar to the symptoms of high thyroid hormones. For example,I'm hypothyroid, and I sweat a lot and I have suffered from tachycardia (fast heart rate) intermittently for years. Both the sweating and the fast heart rate are more likely to be associated with hyperthyroidism in most people's minds, which I don't have.

Another point to make is that low nutrients can cause all sorts of symptoms that can be confused with symptoms of thyroid disease. If your doctors are only testing TSH you aren't going to find out what could be causing your symptoms.

[nausicaa98 in reply to humanbean]

in 2008, the readings were <0.05 mu/l

range was 0.35 to 5.5

they haven't added last years results to my nhs app or the year before but in November 2022 they where

Serum TSH level: 0.50 mu/L

Normal range: 0.30 to 4.20

the NICE guidelines say the range should be between 0.35 and 3.5 mu/l but at my hospital they're much bigger.

I don't know if its relevant but the first summer after my surgery, I had really bad hay fever. i never had it before the surgery and it get it bad every year.

hope these help

[nausicaa98 in reply to nausicaa98]

Does anyone want to comment on the results?

[PurpleNails Administrator]

Trouble is TSH is very unreliable. Looking as TSH and assuming it’s working perfectly & reflecting FT4 & FT3 levels is not fool proof.

Dr is looking at TSH, it’s in range & it’s fairly low in range which is usually good.

but you really need FT4, FT3 & Nutrients.

[nausicaa98]

yeah... they wont test for that.

[tattybogle in reply to nausicaa98]

very unlikely to get NHS to test fT4 / fT3 when TSH is in range ( even if GP requests them most NHS labs will have a policy that overrides the request),,, you'll have to test privately, this doesn't have to be very expensive , there is an NHS lab that does private TSH + fT4 + fT3 test ( fingerprick / postal test, results are sent directly to you) costs approx £30

look up 'Monitor My Health' it's a private service run by the NHS hospital lab in Exeter. Thyroid UK have a 10% discount code for it ..look up ThyroidUK website for details.

[tattybogle in reply to tattybogle]

p.s if you have had more recent thyroid tests on NHS than those shown on your NHS app , go to reception at your GP's and ask receptionist for a printout of thyroid results (and reference ranges) from the dates you think you were tested.

[nausicaa98]

I will and thanks for the reccomendation.