anxiety and unwell

[Lhasa14]

Hi could anyone recommend the best place to get a private blood test done . My gp keeps changing my thyroid medication saying my levels are up and down all the time . I’m not feeling well at all . Have bad anxiety right now . Aching legs and pins and needles . She’s currently lowered me again from 125mcg to 100mcg but never explains my levels . When I call them they are not interested and say to take anti depressants which I don’t want to do as could all be connected to my thyroid . I don’t know what else to try other than pay for tests

[Lalatoot]

Step 1 get copies of your test results and the ranges. You are legally entitled to these. Then you can judge for yourself with our help what is happening.If the GP is changing your dose due to fluctuating TSH then you are likely to feel ill. TSH is not a thyroid hormone.

Also the body likes a steady dose rather than constantly having to adjust to a different dose.

[greygoose]

Sounds like your doctor is dosing by the TSH, and you are now on the TSH seesaw! It's a very bad mistake that most doctors make! They believe that the TSH tells them all they need to know. It doesn't. It's not even a thyroid hormone, it's a pituitary hormone. They are assuming that the pituitary always works perfectly. It doesn't. If the thyroid can fail why not the pituitary? It's only another endocrine system gland, after all.

If you want to know your results - and you should - ask at reception for a print-out. It is your legal right to have one. Then, post results and ranges on here, and let's have a look.

[Lhasa14 in reply to greygoose]

Thankyou . I’ll ask them for it although they aren’t very quick whenever you try and get information off them

[greygoose in reply to Lhasa14]

Just remind them that it is the law, and you are prepared to take steps if they don't deliver the goods!

Good point by Lalatoot . Continually changing your dose is going to make things worse. That is not how it should be done.

[Lhasa14 in reply to greygoose]

Thankyou again for your reply so quick , shame my GP wasn’t as helpful . I’ll go up Monday and ask them for a print out report . I just want to feel normal again

[greygoose in reply to Lhasa14]

I don't suppose he knows enough about it to be helpful. They don't learn much endocrinology in med school.

[SlowDragon Administrator in reply to Lhasa14]

First step is to get copies of all your recent thyroid and vitamin results….ideally from last 2-3 years

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

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Link re access

healthunlocked.com/thyroidu...

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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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 at least annually

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

About 90% of primary hypothyroidism is autoimmune thyroid disease

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[Lhasa14 in reply to SlowDragon]

Hi . My doctor has never tested my vitamin levels or if they have then I haven’t been informed of any results . They just say I have two levels they check . I’ll call reception Monday and hopefully be able to get a print out report within a couple of days

[Lhasa14 in reply to SlowDragon]

Thankyou you’ve all been very helpful on what to do next . Hopefully I’ll get some answers instead of just upping and lowering my medication all the time

[SlowDragon Administrator in reply to Lhasa14]

Just testing TSH and Ft4 is completely inadequate

Yes…come back with new post once you get hold of old GP results

[Charlie-Farley in reply to SlowDragon]

I’m on patient access, but it is woeful and I think purposely difficult to navigate. That said, it is an addition, but not a replacement for your printed results and don’t let any surgery staff tell you otherwise.

On our version (not sure if it is the same for everyone) all I can see is the briefest info and none of the lab sheet detail. Also some records have ‘disappeared’ namely the ones that show their incompetence. I took screenshots beforehand so have a comparison and because I asked promptly for the results from the labs each time have my hard copy, paper proof.

What information is still there is stored under separate headings and you have to go in and out of each section to marry up a consultation with a copy of the results discussed.

Get printouts of your Lab Results Every Time - without fail 😐👍 never lend them back - only give copies- never let them out of your possession…..

[Hidden]

Has your GP ever referred you to an endocrinologist? I was on T3 and thyroxine prescribed by an endocrinologist fora few years. Then moved to another city in England. After a bit they stopped T3. Gradually went downhill but last year saw different GP and got referral to endocrinologist after a friend told me of a local one who prescribes T3 for her daughter. The endocrinologist told me that GPs don’t know enough about thyroid problems (surprise, surprise) and people need to get endocrinologist referrals. He said they should never have changed my medication and GPs only usually go on TSH which others have said on here is useless. I don’t know if this is any use to you but hope you can get a referral and get proper help.

[Lhasa14 in reply to Hidden]

my doctor has never referred me . just says blood tests once a year and that’s all they do . Have had problems last few years and have managed to get blood tests more often due to apparently being over medicated or then not taking enough and have to take more .

[Hidden in reply to Lhasa14]

Sorry to hear that. Hope you do get some better help.

[Georgie120]

HiIf you are in the UK have you got the nhs patient access app where you can order your meds??

If not worth getting as you can get all your results on there as well and also see dr notes.

Sign up at thr drs for it and tell them you want access on the app to your results etc

I also used to get print out so that you can tbe ranges that way you can discuss with dr. I honestly think most drs need to be retrained on thyroid and hormonal problems 😡

[Gophe in reply to Georgie120]

Unfortunately, not all GPs use those apps as they're intended. Mine will allow me to order meds, but the test results and doctor's notes sections are blank.

[Georgie120 in reply to Gophe]

Mine was the same until i insisted that i was allowed to see my results as was my right, they changed it with grumble but it was changed

[BlueKeith]

I had bad anxiety from the change in dose from 50mcg to 75mcg. Once I got used to new dose it completely went . It did take about 5 - 6 week though.

[Peachandcream]

I recently had a blood check because I was feeling very anxious and jittery. Thought it was to do with my under-active thyroid . Had a blood pressure check which showed a result of 210/ 110. Not good. Immediately put on to medication to lower blood pressure. I am monitoring my blood pressure levels. It’s all very scary. Don’t feel there’s anyone to talk to.

[Lhasa14 in reply to Peachandcream]

Hi yes your right . Since the pandemic started trying to get help from GP’s is harder than ever . Hope your medication helps

[Peachandcream]

Thanks for your response. I always feel that I’m making a fuss. But I just need to know that I’m listened to. Difficult times I know, but I think we all need reassurance. Good luck to all of you. Take care.