Test request, only TSH and FT4 can I ask for additional tests. This will be my 2nd test as they have decided I need to be off HRT for longer

[Ladybirdgirl]

As above really. I was tested initially I dont know what for. I went to get tested the 2nd time but my forms weren't there. (Blood tests have been out sourced but I asked to go to the hospital as I feel too unwell.) My doctor has been changed 3 times now. I have only been seen by telephone conversation and miased most symptoms. My worst at present is fatigue i.e very painful legs with barely the stamina to climb stairs. Very tired in my legs and arms.

I also have a nero condition which causes painful muscle spasm so I am wondering if this is the reason it has been worse the past 2 years. To face another winter feeling so cold like this is causing enormous anxiety. I am just 50 now. I am horribly bloated, not over weight but generally bloated, but no idea if that is related.

Really struggling. Someone iffered to walk me through a process where I can get an NHS prescription for the T3 type meds. I dont care which meds I have but I can hardly face more days like this so if the T4 replacement if I am hypothyroid doesnt help how long do they persist?

I just want to feel a bit better very soon. The wait for a consultant has been 18 months.

[SlowDragon Administrator]

Are you currently taking any levothyroxine

If yes ….how much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

How long on this dose

Have you had thyroid antibodies tested?

TPO and TG antibodies

ESSENTIAL To regularly retest vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you currently taking

Important to stop taking any supplements that contain biotin a week before all blood tests

[Ladybirdgirl in reply to SlowDragon]

I apologise I haven't been clear as I am thinking ahead in desperation. I don't have a diagnosis nor have had any medication. I dont understand if these tests ordered are for thyroid alone or something else. Is this standard? Should I ask about any other tests?

[SlowDragon Administrator in reply to Ladybirdgirl]

Only thyroid tests there are

TSH and Ft4

Make sure you test as early as possible in morning

Come back with new post once you get results

[Ladybirdgirl]

I dont understand if these tests ordered are for thyroid alone or something else. I understand they are only asking for TSH and FT4, I understand they were thyroid tests. Is this standard? Should I ask about any other tests? e.g RT3, T3, the Antibody tests that are mentioned here. I really would prefer to have all the tests in one go as I need to be on HRT I still have 2 weeks off it.

I also wanted some guidance about the other tests. If anyone is familiar with the non thyroid tests please could someone help to commont on those please?

[helvella in reply to Ladybirdgirl]

You'll never get rT3. (And it is of questionable use.) Unlikely to get Free T3.

Possibly the most common request is for TFT - Thyroid Function Test. That means TSH only - unless TSH is definitely high or low, in which case maybe Free T4, and only very rarely Free T3 (almost certainly only if FT4 is also very high).

Most of the other tests are other pituitary hormones.

[Ladybirdgirl]

Thank you

[helvella in reply to Ladybirdgirl]

Pituitary hormones

FSH

LH

Prolactin

Whether your adrenal glands are working:

Cortisol

Liver

IGF-1 - Insulin-like growth factor 1

The level of IGF-1 follows Growth Hormone - which is a pituitary hormone.

Oestradiol - monitoring HRT (about which I know nothing).

This website has lots of good information about tests:

labtestsonline.org.uk/

[Ladybirdgirl in reply to helvella]

Thank you 🙂

[JAmanda]

If I were you I’d pay for private tests to supplement the nhs ones. Eg Medichecks Advanced Thyroid

[Ladybirdgirl in reply to JAmanda]

Thank you Amander. Which private do you prefer to use, or find the most reliable and do I need to buy the most expensive and comprehensive?

[JAmanda in reply to Ladybirdgirl]

I always do Medichecks as it tracks the changes visually. It’s not the cheapest though. They do have offers. Sign up for them. Also thyroiduk10 gives you a discount - something like that have a look at the Thyroid U.K. website.

[Ladybirdgirl in reply to JAmanda]

Thanks that's so kind of you Jamanda. Which test do you use I really dont care about the money right now. I saw one that offered genetic panel, did that ever interest you? I cant remember whoch company that was now. So many companies making money from people's misery. I could have a swear fest right now.

[JAmanda in reply to Ladybirdgirl]

I get the Advanced Thyroid or often just the one with T3 t4 and tsh. Have done the Well woman one a few times too.

[SarahJane1471]

Can I ask why you have stopped taking HRT?

[Ladybirdgirl in reply to SarahJane1471]

Hi Sara, sorry I keep forgetting to press reply. My answer is below, for a clear test without added HRT.

[Topes009]

Hi, re HRT, why have you stopped taking this? A lot of the symptoms you talk about can also be peri/menopause symptoms. Transdermal HRT and Utrogestan are not associated with any issues with Thyroid meds. Hope you can get some answers and feel better.

[Ladybirdgirl in reply to Topes009]

I have been on HRT for 8 years, I think the endo wants a test clear of HRT in my system. I am not on any thiroid meds I am just in testing stage. It is the muscle weakness and the muscle pain that is really worrying me. I did speak to my peers who have nothing like these effects from menopause. I may well be in the wrong medical speciality altogether but the high prolactin and the extremely high oestrogen level is what sent me for investigation. Ive taken no more than 3 pumps a day of esptrogen for years. I may be best to pay for a test.

[Topes009 in reply to Ladybirdgirl]

That is worrying, how are you finding not having the HRT? I started this year and still on the road to getting it right but it’s helping. Do you follow Dr Newson? She has a podcast about testosterone that may ring some bells with you … podcast 118. She talks to a lady who was always very fit and active but who became very ill prior to HRT, oestrogen helped but she was still unable to function, the thing she needed was testosterone, she’s now back to normal. Worth a listen maybe.

[Ladybirdgirl in reply to Topes009]

Sorry for the delay I just checked back in. This is so kind of you. Everyone has been kind. I got on really well for a few years having chosen oestradol gel and micronised progesterone (Uterogesterone - this can be inserted vaginally according to one of the menopause websites, goggle will find that info for you) as nearer to natural which was the info at the time. It has been good for me personally. When I became unwell it was as if the HRT was no longer working but also the painful muscles and muscle weakness along with other symptoms such as high cholesterol, hair loss, not TE I dont think as it never came back, dry eyes, list goes on you know. Tye GP jyst said increase tge Oestradiol to 4 pumps. Well hell I then went on to get a oestrogen reading of 3000, yes 3000. And high prolactin. This still did not make sense with taking 4 pumps of gel. The problem for me additionally is that I have a muscle issue caused by dystonia and this has worsened. Dystonia apparently isn't supposed to be progressive. I really do need to get the diagnosis right. Apprently all my initial blood tests are great according to the phone helpline but she wouldnt tell me any details. I havent been tested for testosterone. Emotionally I just feel this is such an enormous effort already. I will have a listen thank you so much. (they arent testing my testosterone though)

[Ladybirdgirl in reply to Ladybirdgirl]

Not being on HRT has mostly increased the hot flushes but Id say not by much tbh. They had returned oddly before I had stopped HRT.

[Topes009 in reply to Ladybirdgirl]

So sorry for the delay replying, has been a busy week or so!I take the Utrogestan vaginally too, can’t tolerate it orally, also couldn’t tolerate the mini pill and realise looking back with the knowledge I have now, that the combined pill was not a happy place for me either.

Isn’t the issue with oestrogen testing that the levels fluctuate madly so they are not reliable? I could be wrong but thought that was what I read? GP has never done or suggested testing mine.

There is an issue with a batch of the oestrediol gel, according to the Balance app forum, believe it has been recalled as it’s not working. A few ladies have found they were no longer getting the relief they had been despite using the same amount of gel etc.

Wish there was an easy answer to all this don’t you? Or at least someone who professionally joins all the dots, giving a holistic solution.

🤗

[Ladybirdgirl]

They asked me to stop for 4 weeks to retest without HRT in my system. I had had an Oestrogen test a few months ago level was in the 3000s but also my prolactin was high so my GP was very confused and referred.