Advice needed please, thyroid results

[Sunny-day31]

Hello, I'm new here and I'm looking for some advice please. Firstly any advice is appreciated and I'm sorry for the long post. I'm at my whits end with my health and I don't know which way to turn. I've been ill for many years and unable to get to the bottom of my problems. For a number of years I've been suffering with extreme fatigue, aching joints, leg cramps, lack of sleep, chronic migraines and given all the health issues, depression as well and strangely worsening anxiety without reason. I've also been having the odd irregular heart beat and palpitations. Plus hair loss and very cold hands and feet and excessive weight gain over many years. I've been going backwards and forwards to the doctors but without success. Stock replies such as eat less, exercise more. At my whits end and spending 3/4 of my life in bed, I have been back to the doctors again. I asked to have my Thyroid level checked given my symptoms and I was asked why did I want it checking??? I also wanted my iron level checking as surely the two together could shed some light on my illness. Something has to be behind why I'm feeling so unwell. I usually just take the doctors words for granted when it comes to test results, but not this time. I checked my actual readings on my records and was surprised to see that my thyroid level has been high for a number of years, but it seems not high enough to demand treatment.

Last tested for the following

THYROID serum TSH level 4.1mU/L normal range 0.27 - 4.20

THYROID serum free T4 level 15 pmol/l normal range 11 -22

Iron level abnormal at 24

serum c reactive protein level at 10

I'm told these results are normal (I'm guessing they are not bad) apart from the low iron, which I'm now taking iron tablets for, but I've had that before without explanation. However when I check my graph for thyroid checks over the years it's always been around this 4 figure, it's been up over 5 before now as well. The last blood test I had was taken late afternoon.

Reading around the internet it seems there could be an issue with my thyroid, as I've always suspected given all the problems I have and the excessive weight gain which wasn't an issue until the thyroid readings started to become elevated.

So at the moment I'm back to square one, as poorly as ever without any success in finding out what's wrong with me. The only outstanding test is to be an ECG, not done yet.

Any suggestions? I have an appointment to go back to the doctors because I'm not getting any nearer to finding out why I'm so ill, I'm at the point where just coping isn't working anymore. I don't get any form of benefits even though I have not been able to work for twenty years, I also pay for my prescriptions from the NHS.

Thanks for taking the time to read this.

[SeasideSusie Remembering]

Sunny-day31

My first suggestion would be to get a full thyroid panel with vitamins with one of the private labs recommended by ThyroidUK. This would cover all the essential thyroid tests:

TSH

FT4

FT3

Thyroid Peroxidase antibodies

Thyroglobulin antibodies

plus the important vitamins:

Vit D

B12

Folate

Ferritin

Don't take any supplements before the test on the day (take them afterwards) and it's said to leave off iron tablets for a week - but that's your call, continuing to take them will tell us how your iron tablets are helping. If you happen to be taking a B Complex or Biotin, leave that off for a week as Biotin affects results.

When booking thyroid tests, we advise:

* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Either one of these tests will do:

Medichecks Thyroid Check UltraVit medichecks.com/thyroid-func... Use code THYROIDUK for 10% discount on any test not on special offer. This tests Active B12 which is more useful than the Serum B12 that Blue Horizon tests.

Blue Horizon Thyroid Plus Eleven bluehorizonmedicals.co.uk/t...

Both can be done by fingerprick, or for an extra charge you can choose venous blood draw.

Post results, ranges and units of measurement for Vit D and B12 when you have them, we can then help you further.

[Sunny-day31 in reply to SeasideSusie]

Hi, thanks for taking the time to read my post and thanks also for your recommendations re testing. I do take a large dose of 400mg of B2 daily for migraine prevention, so I wonder if I'd need to stop taking that prior to the testing. Last time my B12 was tested it was at the bottom of the low acceptable end but not unacceptable at that point. I'm going to go and investigate your links. One thing I need to say though is, we cannot afford private treatment otherwise it's something I would have done years ago. My worry is if I present private results to the doctors they will refuse to treat me as it's not their test requests, or think that I can afford to pay for tests so I can afford private treatment.

[SlowDragon Administrator in reply to Sunny-day31]

Thousands on here are forced to get FULL Thyroid and vitamin testing privately

This then can establish what needs fixing

If vitamins are below range, then GP will be obliged to prescribe

If vitamins are low, but within range, we can advise on what to self supplement

Thyroid testing. Just testing a TSH and FT4 is completely inadequate. It's essential to test FT3 and both TPO and TG thyroid antibodies at same time

Clearly your TSH is high, this definitely needs further testing

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private testing

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

£99 standard price, or £79 or sometimes less when on offer

Extremely common for hypothyroidism to badly affect gut function, this leads to low vitamin absorption. Low vitamin levels badly affects thyroid. It becomes a spiral downwards.

Essential to test vitamin levels as well as thyroid

Frequently vitamin levels will need improving

[SeasideSusie Remembering in reply to Sunny-day31]

Sunny-day31

You don't need to stop B2, it's just B7 (Biotin) that affects test results. Just take our B2 after the blood draw on the day.

You probably don't need private treatment as such, just do this one test. Check on Thursdays with Medichecks and see if the Ultravit is on offer. It frequently is and comes down to £79.

We can interpret your test results and give you guidance on going forward with your GP where necessary.

[Sunny-day31 in reply to SeasideSusie]

Thanks so much for the advice everyone, it's very much appreciated. I will get a private test done in the next week or so. It seems to be the only way to get it sorted given I've been trying to find the cause of my illness for years. It's only now going back and looking at the results in full rather than just accepting the supposed normal result, I can see it's been raised for many years and seemingly never checked correctly reading what the checks are needed. It does seem that private testing is going to be the only way to get to the bottom of it. As merely just taking the result of normal from the doctors isn't getting to the root of the problem.