Symptoms but normal bloods. Help !: Hi does... - Thyroid UK

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Symptoms but normal bloods. Help !

Sumilo profile image
18 Replies

Hi does anyone have symptoms but with normal thyroid results?

Just turning 50. All my joints ache every day , I am really stiff. My muscles are sore too like I have been working out. I am worse first thing in the morning. I start to ache when in bed lying still. Sometimes the pain is shooting and wakes me up. And I have to get up as it’s too sore lying still. It starts to ease up as the day goes on. I am retaining fluid, I have constant constipation. I have put on 2 stone in last year. Mood is low. But doctors say my bloods are all normal??? My mum had underactive thyroid from about age 48. This is really affecting my life on a daily basis. I’m off work at the minute and I’m worrying about how to cope when I go back. Can’t go back to doctors just now because of coronavirus. Any ideas please

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Sumilo
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18 Replies
SeasideSusie profile image
SeasideSusieRemembering

Suilo

To be able to give helpful responses we need to see your current test results, just saying "normal" doesn't tell us anything.

Can you please post results, with reference ranges, for

TSH

FT4

FT3

Thyroid antibodies

It's also important to test the following :

Vit D

B12

Folate

Ferritin

Your joint aches and stiffness could be low Vit D. I used to have terrible trouble on getting out of bed, my ankles were so stiff I had to shuffle along and it took a long time to be able to walk properly. I discovered I had severe Vit D deficiency, once addressed this stiffness disappeared.

Sumilo profile image
Sumilo in reply toSeasideSusie

Hi I managed to get my blood results from February from my GP but can’t work out how to post them on here. Don’t know how to attach them, can you help p,ease.

SeasideSusie profile image
SeasideSusieRemembering in reply toSumilo

Sumilo

You can edit your opening post in this thread by clicking on MORE, choose EDIT, then ADD A PHOTO, then SUBMIT.

Make sure there are no personal details showing - name, date of birth, NHS number, address, etc, as this leaves you vulnerable to identity theft and we have to remove pictures showing these details.

Or you could just type the results and reference ranges into a post.

Sumilo profile image
Sumilo in reply toSeasideSusie

Thanks will do that now

Sumilo profile image
Sumilo

I haven’t asked for results before as I was assured they normal. I have had them tested about 3 times in the last year. I will call and ask if I can get a copy of them though. Thanks

Lora7again profile image
Lora7again in reply toSumilo

Just because your doctor tells you they are "normal" doesn't always mean they are. I suffered for over 2 years with untreated hyperthyroid and my GP told me it was the menopause when infact my TSH was suppressed at 0.002. A lot of us on this site have similar stories where we have been kept ill for years because our blood results are within NHS guidelines. I was advised by my Endocrinologist to see a counsellor because I felt so ill. You can read my story on my profile page if you are interested. You really need to get your results and post them on here so members can help and advise you.

SeasideSusie profile image
SeasideSusieRemembering in reply toSumilo

Sumilo

If you are in England your surgery may offer online access to test results so it's worth asking and registering for that if they do.

If not then just as the receptionist for a print out (don't accept verbal or hand written results) and ask if they will either email them or if you can pick them up. In the UK we are legally entitled to our test results without charge and we don't have to give a reason.

SlowDragon profile image
SlowDragonAdministrator

Frequently GP only tests TSH...which is completely inadequate

Never ever accept an opinion....ALWAYS get actual results and ranges

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.

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

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

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

As your Mum has hypothyroidism, it’s essential to get thyroid antibodies tests.

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

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

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Come back with new post once you get copies of GP tests

And/or FULL Thyroid and vitamin testing privately

Mountaineer67 profile image
Mountaineer67

Hi Sumilo, if you are female then I am afraid it may be being exacerbated by perimenopause/menopause - the hypothyroid and menopausal symptoms often replicate each other. You can get hormone levels checked to see where you are in this "joyous" part of life. If you are male, ignore all the above - you've got the better end of this deal

Lora7again profile image
Lora7again in reply toMountaineer67

That is exactly what happened to me 12 years ago when I was 47. My GP wrongly assumed I was going through the menopause. I actually didn't go through the menopause until I was 55 and the symptoms I had then were nothing in comparison to suffering with thyroid disease. I went 2 years of having 3 uterus biopsies(hysterscopes) and 1 cervix biopsy which were not pleasant. My hormone results said perimenopausal and that I was still ovulating. I was given the mirena coil which made me feel worse and I even paid £150 to see a private dermatologist because of hair loss who told me I had female pattern baldness. Not one of those so called experts spotted my TSH was 0.002! I joined Elaine Moore's site and she spotted straight away what was wrong with me. I was in a sorry state by then with a balding head and nails dropping off. I looked like someone from the walking dead. My treatment for the last 10 years has been appalling and I have been offered counselling and antidepressants couple of times for feeling so ill. I know there a lot women in the same position as I was and are probably being fobbed off with antidepressants and being told it all to do with their age.

Donought profile image
Donought in reply toLora7again

That's so interesting, and sad to read, as I'm in the same boat alright TSH is higher at 0.27 but still low. GP is certain it's menopause, I'm 46, but I'm sure it's thyroid and adrenal related. I've decided I'm going to save and go to a decent thyroid endorsed endo as when I asked my GP for Referral to one she replied "no need, I'm an expert on hormones". After much arguing she agreed to contact them and ask thyroid and menopause 🤨 😬 I've agreed to take HRT for 6 weeks of only to prove that she's wrong and to give me time to sort out a private appointment.

Lora7again profile image
Lora7again in reply toDonought

Unfortunately they won't do anything until you become really ill. I kept going back for over 2 years and was given hormone patches which I did not use because my mother died from breast cancer and I didn't want to take the risk. It annoys me when doctors assume it is something to do with your age and when I was losing a large amount of hair one told me your hair thins as you get older. I was actually 48 at the time and one of my elderly aunts had a good head of hair and she was in her 80s.

Most doctors follow NHS guidelines and go just by the TSH which in my case means nothing. At the moment my TSH is 0.38 and I feel really well when it was 0.80 I felt dreadful. Everyone is different and they should be looking at symptoms as well as blood tests.

Donought profile image
Donought in reply toLora7again

We sound really similar. My mother also died from breast cancer but I agreed to take it for 6 weeks, if only to prove her wrong. That said I'm enjoying the lack of hot flushes and sleeping well. It's changed nothing else. I'm be going back and demanding a referral to an endo at my appointment.

I think I feel best when my TSH is around 0.35/0.40 anything below and it's too much, higher and I'm not great either. T3 is high with normal/ low T4 so I'm thinking more pituitary but either way is not linked to bloody hormones :-) in fact I think I read that in order for the hormones to work properly all the other parts, thyroid, pituitary etc need to be in good working order. And I'm with you on the hair thinning part. Great clumps fall out in the shower ( I don't brush my hair otherwise I think I might go bald).

We know our own bodies and we should be trusted to know when something isn't right. You're so right about looking at symptoms as well as blood tests.

Willowrabbit profile image
Willowrabbit

Hi,I also suffer with the same symptoms,I often fall when I try to get out of bed.

I have an underactive thyroid and levothyroxine, I keep stopping it as I can't stand the pain, it doesn't really help me cos I know if got take the medicine. I put different types of cream on that says it's for my symptoms, I will then to work but 😵😵😵 they don't.

Iv found some powder that athletes take after a workout, it was on an article that I read about muscle pain, and it helps, but it also makes your muscles bigger, that includes all muscles, you take it for a year and then stop, you are then supposed to be pain free for two years.its called creatine monohydrate, you can buy on the internet at Amazon, good luck

Sumilo profile image
Sumilo

Thanks for all the replies. I am on livial HRT for menopause and have been on it for 4 years. So I am definitely not in peri menopause, haven’t had a bleed for about 4 years now . I had wondered if it was the HRT causing my issues but have been on it a while now and had no previous issues with it. I did stop taking sodium valproate (epilim) last January after being on it for 20 years. My neurologist decided it was ok as I had been seizure free for years and I was developing some neuro issues (severe brain fog, couldn’t retain information etc)which turned out be long term use of the medication. My brain feels so much better but now I have all these other symptoms which are becoming all consuming. I’m just desperate to find out what is causing all this.

Sumilo profile image
Sumilo

Also don’t know if this means anything but only thing showing on my bloods is high MCHC . My gynaecologist said to check with GP but he said doesn’t mean anything on its own??? Any ideas please

SlowDragon profile image
SlowDragonAdministrator

You need folate, B12, ferritin, iron, vitamin D tested plus FULL Thyroid

Thousands of members on here forced to get full testing privately

Small selection of them here

healthunlocked.com/search/p...

Algic profile image
Algic

Could be a co condition. Check any other meds for side effects that cause weight gain. First thing you will b asked or told is diet. For example I have fibromyalgia. Everything hurts first thing. Which is thought by some to have an autoimmune connection but nobody really knows.

Where do you get your fibre from as that might be source of constipation ( gluten free worked wonders I had all the tests )avoid the nightshades potatoes etc and even though your retaining fluid drink plenty as this helps the kidneys flush out stored fluid and helps constipation.

Sounds like you need a good visit to your gp with a list and just say I'm getting following. It took several consultants to diagnosis my fibro in the nineties and I thought I'd beaten it. It came back with such a vengeance I was refered for suspected MS.

Hope you can get some relief but try and avoid relying on medical solutions for the tummy. Sorting that out might be the start of getting well.

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