Should I pursue further please?

[Wattie88]

I have many new symptoms this last year which include gluten problem, profound Dizziness on standing, exhaustion and had put on weight. Boiling hot or freezing cold, high and low BP. I had M. E. diagnosed before these new symptoms but it had virtually go e into remission. As some of these symptoms could be thyroid I've had nhs tests which they keep saying are fine. I want to make sure I don't have has hashimoto etc so recently asked if I could also have an Antibody test via nhs. The Gp agreed to and I had bloods taken only to find lab manager didn't go ahead and do the test as he said 'no clinical need' as all my other tests were in range, shockingly the sec when I first phoned told me my test was fine / normal. How can it be when no blood was actually processed :-0!! I had heard you can have normal Tsh etc but this could be out. I am also trying to save up to have Reverse T3 privately. A private doc said I may feel better running higher T4. Should I pursue this further or am I flogging a dead horse so to speak. I'm having to be my own Doc I may have Pots but I want to double check no thyroid problem first. I don't know who to believe and I also get brain fog :-0. Thanks anyone. Xx

[Aurealis]

It’s one thing battling for thyroid tests when you know you have thyroid problems, but your symptoms could be a number of things. I don’t think you should be trying to be your own doc.

I think I’d be visiting the doctor and describing my symptoms, and wait for him/her to use the very expensive medical training provided at the tax payers expense, to provide insight to what is causing your problems. And if he/she can’t, then maybe referring on to someone more specialist?

Or you’ll go to A&E...

So sorry you’re in this worrying situation, x

[Wattie88 in reply to Aurealis]

Ah thanks for reply. Unfortunately they aren't interested. I have many invisible symptoms and my tests always come back normal (apart from BP) so they just do the tests and say I'm fine noone ever follows up, or suggests a referral. I've had to pay to see people privately (pots cardiologists) but that hasn't got me any further either. I guess I'll eliminate thyroid from my enquiries when I manage to afford the last two tests myself. I have a daughter to care for and can't work now. Thanks again. X

[Aurealis in reply to Wattie88]

At least you can access this site and get some advice, and tests can be obtained privately, and thyroid hormones obtained without prescription. But it is expensive. I think a lot of us have been through frustrating times before diagnosis. Have you seen a consultant with your ME?

I had ME and made a very slow recovery until I started Levothyroxine. ME wasn’t recognised as a real condition in those days. I haven’t had further problems with it since on thyroid treatment.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Assuming you are in the UK

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

If 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. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Dizziness can be symptom of low B12, common with Hashimoto's

ME is frequently a misdiagnosed thyroid problem

[Wattie88 in reply to SlowDragon]

Thanks for your reply. Sorry only just seen. I keep getting knocked back from gps on thi gs do makes you question whether to keeo pursuing. I had my blood drawn for Antibody test and then lab manager refused to test the sample. I'm almost able to test my reverse t3 so think that would be good to carry on with. Thanks again much appreciate. X

[SlowDragon Administrator in reply to Wattie88]

Much more informative to test antibodies than Reverse T3

Also need to know vitamin D, folate, ferritin and B12 too

[Wattie88 in reply to SlowDragon]

I was annoyed I was promised the antibody and then they renaiged on it. I am low funds. I've had ferritin which was 12 or 13 from memory they said was good. B12 was just over 600 but this wasn't Active b12 and I inject done each month currently. They won't test vit d so haven't had that done. Thanks agsin for replying. Everyone in family and drs surgery wants me to shut up and accept being sick. However being single mum I want to get better if can so we can have a better life. Xx

[SlowDragon Administrator in reply to Wattie88]

You can get vitamin D tested for £29 via vitamindtest.org.uk postal kit

Ferritin sounds very low. You need to get actual 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. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018 due to new EU ruling )

[Wattie88 in reply to SlowDragon]

Yes I get my results printed out. I got someone else's heart results a month or two ago only I noticed. I also spotted something else on o e. I don't trust that they are checking them now. The ferritin was within the lab range something like 5-30 mine was 12. Thanks for the vitamin d tip / test. I'm determined to get done where. X

[Wattie88 in reply to SlowDragon]

Hi there have some money for test now and medichecks had great offer on Thursday fir the thyroid ultra check. Typical went to buy and its now gone up to £79 :-(. I see other companies just do antibody test but see there are two peroxidase and globulin or something similar. Do you happen to know if both are crucial please? I have had ferritin, Tsh, T4 done recently. Is it worth holding out for the ultra? I have soo many bills as single mum unf. Don't worry if don't know. Thanks again x

[SlowDragon Administrator in reply to Wattie88]

Yes you want to test FT3, FT4, TSH and BOTH TPO and TG antibodies

You really want vitamin D, folate and B12 too

Medichecks have offers on Thursdays only

Blue horizon tend to have offers towards end of month

[Wattie88 in reply to SlowDragon]

Ah thanks for the tip how bizarre one day of the week. I will hope its on again at saner price this week then. Many thanks indeed. X

[SlowDragon Administrator in reply to Wattie88]

Thyroid Thursdays.....bit of a gimmick, but worth waiting for

[greygoose]

And if your rT3 is high, what will you do about it? What will it tell you? Save your money, it's not worth doing.

[Wattie88]

Hi there, finally got my Medichecks test. But confused as doc has said my low ferritin and folate won't be because of b12 injections. They say my thyroid is fine but a patient has said its low T4. Still confused I hoped the doctors at these labs would be more knowledgeabke in interpreting results than nhs. Any ideas if you've time to reply ? Many thanks indeed, hope you are stable currently? . xx

FunctionTHYROID STIMULATING HORMONE 1.6 mIU/L 0.27 - 4.20

FREE THYROXINE 14.600 pmol/L 12.00 - 22.00

FREE T3 4.19 pmol/L 3.10 - 6.80 THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES <9.0 IU/mL 0.00 - 34.00 HAEMATOLOGYVitaminsACTIVE B12 *>300 pmol/L 25.10 - 165.00

FOLATE (SERUM) 8.58 ug/L 2.91 - 50.00

BIOCHEMISTRYInflammation MarkerCRP - HIGH SENSITIVITY 4.74 mg/l 0.00 - 5.00

Iron StatusFERRITIN 26.9 ug/L 13.00 - 150.00