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Is it worth paying for full thyroid profile?

(18 Posts)
HyacinthBouquetNo1 Fri 13-May-16 10:26:12

Reading various similar threads, I have found a full thyroid test online for £69, is it worth me forking out for this? I am getting quite desperate now as I feel that I am getting worse and no concrete diagnosis of what is wrong apart from "fibromyalgia" (which I query) The test is a fingerprick test that you do yourself in your home and then send off, does anyone know if these are any good? Their information states that anyone suffering with chronic fatigue should have a full thyroid profile done, something that I have never had.

The only test I have had done for thyroid is TSH a few years ago which was within normal range, so maybe I am barking up the wrong tree but if all tests are normal, it would put my mind at rest regarding thyroid. GP wont test further unless TSH is abnormal but I have been reading about people with problems whose TSH was in normal range but they were still ill.

Anyway, to be brief, my problems are EXTREME tiredness, weakness, dizziness, various sensory feelings, tingling, numbness, pins and needles, etc. I am always cold, my hair has been falling out for about 8 years now and I don't know why, surely fibromyalgia does not make hair fall out????? I also have very dry skin even though I drink plenty of water. I am very pale with huge dark circles under my eyes. I look terrible. I feel the weakness is getting worse, I can barely stand sometimes and its a struggle just to walk around the house. I do have an ongoing balance and dizziness thing going on at the moment that the GP thinks is inner ear related.

For history, I have treated vitamin B12 and vitamin D deficiencies, IBS, bile salt malabsorption syndrome, tachycardia and coronary artery spasm. I have been tested for coeliac with gastroscopy and I don't have that.

The only result I have is from 2013 and it is TSH 0.89 reference range (0.30-6.00) which is fine, I think

So do you think I would just be wasting money by ordering this test?

clarella Fri 13-May-16 11:24:34

That Tsh is great BUT it could have changed, so maybe go back to GP first and find out results. If it's borderline that's when perhaps it might be worth doing a full profile (especially for antibodies). Thyroids can be fine and then something can change and the auto immune system can attack, like type one diabetes can come on in middle age. (Also auto immune).

clarella Fri 13-May-16 11:25:29

Have you had ferritin test? That could be worth checking too.

HyacinthBouquetNo1 Fri 13-May-16 11:36:23

Hi, I don't think GP will do any further testing, I have had loads of bloods over the years and am just told they are "normal".

AttilaTheMeerkat Fri 13-May-16 13:03:38

You need up to date tests; anything done over 6 months ago should be discounted.

All your symptoms could well point to an underactive thyroid gland (hypothyroidism). Something is making you feel very ill indeed and has done for a long time.

If your GP cannot assist further (or just blithely accepts all results as "normal") then change GP practice or at the very least see another GP within it. Will GP refer you to an endocrinologist?.

www.thyroiduk.org.uk/tuk/index.html is a good website.

Pleasemrstweedie Fri 13-May-16 13:24:36

Symptoms can precede blood tests by a number of years.

Yes, if you have the money, shell out for a full thyroid profile. Blue Horizon and Genova Diagnostics are the market leaders. You need: TSH, FT4, FT3, RT3, TgAb and TPO.

Many believe that fibromyalgia is nothing more or less than a symptom caused by low FT3 levels.

HyacinthBouquetNo1 Fri 13-May-16 18:23:26

Thanks everyone, some interesting info there. Looking into it further, the test that includes RT3 is £119 and cannot do the test at home, I would have to go to the next town over to have an appointment for the blood to be taken but its only about 20 mins drive away.

I am going to have a think about it and will look into it a bit more tomorrow

StarTravels Fri 13-May-16 19:30:04

I don't think RT3 is essential.

Badders123 Fri 13-May-16 19:39:01

Are the finger prick test reliable?

Randomname653 Fri 13-May-16 19:42:19

Have you thought about Addison's disease? Also auto immune and some of your symptoms seem to fit.

Purplemonkeydishwasherpimp Fri 13-May-16 19:55:32

Just go to your Dr instead of wasting money!

HyacinthBouquetNo1 Fri 13-May-16 20:01:56

Drs have done loads of bloods over the years, they wont do any further testing on me. I was just curious as NHS only test TSH, they wont test any further as my TSH was normal.

I try to get on with my life but seem to be getting worse. I think once you are diagnosed with fibro, the medical community cannot see past that and everything gets put down to that

clarella Sat 14-May-16 07:40:46

First step - I agree with Atilla. When was last thyroid test? If more than 6 months ago YANBU to retest given symptoms. Symptoms can come on very slowly.

Find out last ferritin test (and b12, vit d). Were you treated for b12 via GP?

Regarding ferritin- some people do experience symptoms below 50, 'normal' is 70+.

I think I would change GP and say that you'd like a comprehensive step by step ruling out of everything. I found I need ferritin to be over 70 (I am hypo and that must be kept just below 1) and that I was hypermobile too which adds to fatigue. Lastly they found I have mild asthma, about which I had no idea (I don't have allergies so just really struggle with coughs). I would hope you might be referred to an endo (you could request this).

A Tsh of 0.66 wouldn't warrant further investigation according to the labs via NHS (sometimes gps struggle to communicate the need for extra). There's no reason why a good GP couldn't request t4 specifically, but they'd tend to work methodically. It varies during the day so isn't as firm a test as Tsh.

You could spend the money for peace of mind but then might be in the grey area if Tsh was say 3.5, according to NHS. If antibodies were present they might monitor you or trial medication.

HyacinthBouquetNo1 Sat 14-May-16 11:35:58

My last TSH test was in 2013. Not sure if ferritin has been tested but sure it would have been, is that included in a full blood count?

Re vitamin B12, I have not been tested for that since 2007, that is when I was started on injections which I am still on now, apparently, if you are on injections the computer wont print out a request as it skews the results so I cant be tested for B12 now

in 2013 , vitamin D level was 18. I had a course of loading doses and am now on 10,000 units per week maintenance. In January 2014, the level had risen to 41, I think. Not been tested since.

On balance, I don't think I will pay for the thyroid test, it probably would be waste of money/not really useful/cause more worry!

Thanks everyone for your thoughts

clarella Sun 15-May-16 06:28:32

So you have pernicious anaemia which is another auto immune disease - there are slightly higher chances of having others if you have one. So thyroid could have changed since that test or you could have s different issue eg coeliac or even vit d issues again. Definitely go back to GP and I hope you feel better soon.

Chronic constipation can be another symptom of hypothyroidism, do you have this symptom?

Pleasemrstweedie Sun 15-May-16 18:48:56

Your vitamin D is still too low and is another thing that may be the source of your fibromyalgia.

Softgels from Amazon, say 2,000iu a day will sort that out pretty quickly.

I made the mistake of assuming that once I'd got my levels up they would stay up, so I was surprised to find they'd plummeted again. You do need to keep on top of these things.

HyacinthBouquetNo1 Fri 20-May-16 12:23:27

well, following on from this thread, I didn't get the thyroid test done but I did get a 9am cortisol test done, (thanks to Randomname653 for the idea) I picked this test as it was the cheapest and I wanted to check out the company first before ordering anything more expensive and this is a test that I have never had.

Anyway, the result came back in the normal range but at the lower end, and the doctor's comments are to have a re-test and discuss with GP.

So my question is, considering that I am still ill with all my many symptoms, is this something worth pursuing? Does anyone know anything about cortisol levels? I have the reference ranges and I am in it but what is the optimum range for a healthy adult at at 9am testing? Does anyone know?

clarella Fri 20-May-16 19:10:54

I do know I was tested for Addison's disease. There can be a link with the thyroid system too. So it could be worth investigating via an endocrinologist. However, I know my cortisol response was good (in that it doubled). It's the response that is the issue in addisons; if it doesn't respond appropriately, then you can go into crisis when poorly etc. I never plucked up the courage to ask what the actual initial cortisol response was. Again, it's a daily cycle, dipping at night and raising first thing in the morning. I think that's where it gets muddy with mainstream medicine etc.

I do know cortisol (the daily cycle, probably with melatonin) can be regulated or improved through sun / sad lamps, eating first thing in the morning, exercise etc. And using dim or old orangey light bulbs and no blue screens in the evening. I think vit d can help too (when I've read about it).

I do suspect I have a slightly low cortisol level as I just don't carry much fat and loose weight easily.

But this is all just my experience. It's worth going back to GP. Maybe check the nice guidelines before you do.

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