Yes you should no you shouldn’t

[Trying-hard]

Hello me again

Some time ago I was told by one gp that I was possibly talking a little bit to much thyroxine BUT he would rather it was a bit over than under, I went for my bloods last week, I have spoken to the doctor and they want me to reduce my dose again I explained what the other gp had said and she said well HE’s WRONG, I mean just like that, he’s wrong. What are you supposed to do? No wonder I get depressed, last time I dropped by 25mg I had something like static electricity in my hands and feet I felt awful .

I’m back next week for more blood tests because of high inflammatory markers in my bloods? So I will try to get my hands on printed copies of these last ones. I don’t know what to make of it this last 6 or 8 weeks I have felt better than I have in ages and I don’t just mean physically. Last time I dropped my dosage I was a mess in about a week is this normal. Like, any of it?

Thanks

[MaisieGray]

You don't have to "try and get your hands on printed copies" of your results; they are your legal entitlement and you simply need to ask at reception for a copy to be printed off for you. In the event of them wrongly making a fuss, you can refer them to the Data Protection Act 2018 and the associated General Data Protection Regulation.

[Trying-hard in reply to MaisieGray]

Thank you but I asked for the hospital ones before and they told me they didn’t have them, on fact I thought I was going crazy they told me I hadn’t had them done,,,, yet today they told me only that the tests they did were looking at were for my pituitary and the problem wasn’t there.

[Angel_of_the_North in reply to Trying-hard]

Well, you want those results as well, so you can tell what they think they did test. They might be confusing you with another patient. If necessary, write a letter saying that you are making a subject access request under the data protection regulations for ALL your medical records. They can't charge for those either. so that might make them see sense and give you a copy of the latest ones without a fuss

[Trying-hard in reply to Angel_of_the_North]

Thanks for the info I will do my best

[SeasideSusie Remembering]

I've had the same, GP says TSH is too low, you're overmedicated, not allowed to discuss anything because she worships the god TSH, actual thyroid hormone levels aren't taken into account, nor how you feel.

The Advanced Nurse Practioner is fine with TSH being below range as FT4/FT3 are well within range. I said what am I supposed to do when the GP says only go by TSH and reduce dose. Answer was - point out that historically your TSH has been below range for so many years. That's all well and good, but it still cuts no ice with the GP. So I now dodge the GP's request for blood tests (I just don't book them when she tells me to) and I avoid discussions about it with her.

Post your results, with reference ranges, when you have them, and we can comment.

[Trying-hard in reply to SeasideSusie]

Mmm thanks for this I have actually tried to see the same gp so that didn’t happen seems like I was waisting my time there too then?

Thanks for getting back to me

[SlowDragon Administrator]

If FT3 and FT4 are not above top of range you are not over treated

TSH is completely unreliable test once on any Thyroid hormone replacement

Getting copies of your blood test results and ranges is first step

See exactly what has been tested and equally important what hasn't been tested

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Low vitamins tend to lower TSH

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

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

[Trying-hard in reply to SlowDragon]

Thank you I was feeling so ill a few months ago that I was going to bite the bullet and have this private testing but I wondered if there was any point, you know, I mean will the doctors even look at it?

[SlowDragon Administrator in reply to Trying-hard]

Thousands on here forced to get private testing

It can tell you loads of essential info

For a start many have very low vitamin levels.

If these are below range, then GP should prescribe to improve.

But if vitamins are low, but within range members can advise on what needs improving

Getting vitamins optimal can significantly improve symptoms

Also essential to know if you have high thyroid antibodies

Has GP tested for TPO and TG thyroid antibodies?

If your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Many people do not make full recovery until gluten free

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

[Leics65]

Is it possible to access our blood results online somehow?

[SlowDragon Administrator in reply to Leics65]

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.