Full thyroid test

[Floppy99]

Im wondering how many of you have been offered the full thyroid test as so many symptoms mimic this condition. I have been reading up on this on the Thyroid section. I had bloods done last week as my BP is high and endless issues with neck and back of head (Not TMD). What I have ascertained is that the T3 and the TSH levels alone dont prove anything. Another annoyance is that any thyroid test should be done first thing in the morning before food or drink (no GP has mentioned this either). The only option in my case is to pay for the full test which includes B12, TPO, antibodies etc. I can do the skin prick test for £80 or go to a private hospital for £250. Im not willing to fork out that much to find out my results are perfectly fine so I'll opt for the skin prick first. I am also perplexed as to why I have paid twice to see private rheumatologist who has asked for numerous bloods but never these thyroid specifics (one only asked for basics which wasted 6 months). Lots of my issues are common on the thyroid scale however, things like fertility and periods are not. I also have an annoying lump in throat (that could be due to Duloxetine). I am still not convinced my issues are fibro as mostly drops with fatigue and aching neck and hips. GP not fussed on me mentioning PMR either. I am not a typical Fibro patient it makes no sense. I wonder how many have actually done the full thyroid to dismiss this as an option and why NHS wont do this TPO test when so many are suffering but relies on the patient paying.

[redmaple-5]

My GP did Thyroid TSH and antibodies blood test which showed Hashimoto’s. I had to pay privately for T3 and T4 which came back normal. I find Fibromyalgia and it’s complexities are a daily challenge. Like a jigsaw with missing pieces. 🧩

[desquinn Partner Volunteer FMAUK Trustee]

The thyroid test issue has been around for a long while as well as the suspicion that a lot of people have undiagnosed thyroid condition. Just like with other differential conditions it is important to have things rule out. There are many that have had the other thyroid test and have ruled it out but some will indeed benefit from a positive result.

As to discussion on the need to change the NHS policy on thyroid testing I think that is something for the TUK site rather than here.

you say "GP not fussed on me mentioning PMR either" which confuses me and you should speak with them as PMR is easily treated and can really improve symptoms.

[Floppy99 in reply to desquinn]

My neck and headaches at the back is very much in tune with PMR. Saw GP last week she wanted another set of bloods to show inflammation. I questioned the need as PMR doesnt show in bloods. She wont entertain short course of steriods. I have bloods back nothing to show. Just issues with hypertension. I find it hard that my neck and only my hips ache yet I feel they are throwing fibro around instead of finding cause. When I saw rheumatologist last he had a quick poke of my neck and casually said it prob wear and tear.

[desquinn Partner Volunteer FMAUK Trustee in reply to Floppy99]

There is no blood test for PMR but ESR/CRP would show inflammation.

More info: nhs.uk/conditions/polymyalg...

[Makie-Uppie]

Worth a go to rule several things out, as you say expensive, the reason I do not get acupuncture anymore I have to eat too. My mother has thyroid problems and they went unnoticed for years, put down to woman's problems/depression when they found out a simple tablet and some drops changed her into something resembling a normal person but grumpier. I was raging about it for weeks thinking about the misery she went through, no apologies though it maty have cost money.

[CrystalGecko76]

I have underactive thyroid as well as fibro...both diagnosed around the same time (maybe give or take a year) mibe is just very very slightly off so on a very low dose of thyroxine

[Judithdalston]

Read my history Floppy99... in chronological order I had problems with neck(40 years ago now), then rest back and hips, then type2 diabetes, hypothyroidism and more recently insulin dependent ( due to sepsis/septic shock after routine gall stone procedure went ‘wrong’ and wrecked my pancreas), and then fibromyalgia. So believe your symptoms may be interrelated. I use a gentle McTimoney trained chiropractor every 2 or so months; take T3 with levothyroxine but still aching and fatigued all over... just without the T3 and manipulation I am much worse and can barely walk etc. It’s the active Free T3( FT3) that you need higher in range, that GPs rarely test. Certainly worth doing private test with all thyroid figures but also folate, ferritin, b12 and vit D...high TPO ( I was very raised TgAb only) goes with suggestion to try gluten free for at least 3 months.

[Sleepy2oo]

Hi Floppy99,

I am lucky enough to have a chronic fatigue clinic at my local hospital and the first thing they did was rule out thyroid problems. This was done on the NHS so I didn't have to pay. They ruled out thyroid problems but couldn't do much more to help because there were only 3 appointments and the consultant said that there wasn't much he could do amyway, apart from refer me to other clinics to allieviate the symptoms, because there was a lack of research on ME which he found frustrating. But it was nice to see a doctor who believed in ME and fibro and did want to help. It was another 2 years before I was also diagnosed with fibro as well.

I've just read your post again and it says the NHS won't do the tests. That is not right, they should test for everything to make sure you have fibro not something that they can treat. Try going through a chronic fatigue clinic like I did to get the tests done. It might take a bit longer, especially because of covid, but you won't have to pay.

I hope this helps.

Becky