Undiagnosed but suffering symptoms: Hello, I am... - Thyroid UK

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Undiagnosed but suffering symptoms

MsWhistledown profile image
17 Replies

Hello, I am looking for some advice and wondering if anyone here has been in a similar position as me. Thank you in advance for reading.

I have been suffering with symptoms for quite sometime. They used to be sporadic and seem to come and go but the past 6 months they are becoming more continuous and getting worse.

I went to my GP with mostly digestive problems and they did lots of blood tests, one of which was for my thyroid. The result for that came back as “high” and they gave me no explanation as to what this meant, only that it might be normal for me and we’ll test it again in a year. I had a blood test about 6-8 months ago as well and again an anomaly came up on my thyroid, it was tested 3 months later and returned as NFA.

All other tests regarding my digestive issues have come back negative. However, I have ongoing insomnia, fatigue, brain fog, itchy skin and restless legs and just feeling generally flat and exhausted. I also get muscle and joint aches and pains.

My question is this: is it likely my thyroid is the cause of all these unpleasant symptoms and going my my blood test results should I be put on some form of medication for this? Immediate members of my family all suffer with an under active thyroid so there is a family history. If I get no further help from my GP would it be worth me getting tested and seen privately?

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MsWhistledown
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17 Replies
PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum.

Suspect the TSH (thyroid stimulating hormone) is high.  This is a pituitary hormone which rises to signal the thyroid to work harder. 

The TSH can be very unreliable.  Usually 2x above range TSH - 3 months apart should prompt replacement.   but because the TSH can vary & is unreliable it might be that your 2nd TSH was just within range. 

Many doctors also think that unless it very high eg above 10 it doesn’t need treating. 

Recommend on here that blood test for thyroid are taken as early in morning after fasting overnight.  Supplements containing biotin can interfere with test so avoid 3-5 days before test.  

Do you remember the time of test?  

You can also obtain your own results and find out what was tested & exactly what the results are saying. You can arrange a printout with ranges from reception. Or see if online access can be set up. 

Ideally FT4 & the active FT3 Thyroid hormones are tested, but often they aren’t especially the FT3. 

Lots of people arrange private blood test to test, FT3 thyroid antibodies & key nutrients.  You need for a full picture of thyroid health. 

thyroiduk.org/help-and-supp...

MsWhistledown profile image
MsWhistledown in reply toPurpleNails

Thank you so much for your advice.

I am pretty sure the blood tests were in the afternoon and I hadn’t fasted for them. I wasn’t given any instruction to fast. So, thank you for the advice on that. Any further testing I will make sure takes place in the morning, fasted.

I am awaiting a call with my GP today due to the symptoms getting so debilitating in the last week and will see how helpful they will be. Otherwise will arrange for private testing.

I just feel hopeless regarding the help my GP is going to give me. This has been going on for so long and I am missing work due to feeling so unwell.

Anyway thank you for your reply and helpful link 🙂

Susie35 profile image
Susie35 in reply toMsWhistledown

Good luck with that. I have been getting my thyroid checked every 3 months for nearly a year. Rang doctor last week. She kept trying to convince me my tiredness was depression and wanted me to start antidepressants. I didn't agree. I know I do feel low from time to time but it's the fatigue that makes me feel like that. All the best and hope you get help. Sorry I can't offer any advice. I just joined yesterday but at least you know you are not on Your own.

MsWhistledown profile image
MsWhistledown in reply toSusie35

thank you. I wish you all the best as well and hope you get the right help soon. I have had similar conversations in the past with my GP and I refuse to take antidepressants. Like you I am feeling low because I am so exhausted and trying to commute to and from work and do a full time job feeling so unwell the majority of the time. I have got to the point where I am going to go to a private GP/get testing even though I know it will cost a lot!

Wishing you luck on your journey. Hopefully we will get the right help soon and be on the road to feeling better soon 🙂

SlowDragon profile image
SlowDragonAdministrator

If tests were abnormal you should have retest 6-8 weeks after first test (not waiting until a year later )

Make another appointment and request FULL thyroid including thyroid antibodies and vitamin levels are tested

Book early morning test…..9am latest

Previous test - do you have any actual blood test results?

if not will need to get hold of copies. 

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.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still 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.

 

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease 

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

MsWhistledown profile image
MsWhistledown in reply toSlowDragon

Thank you for your response and advice. I really appreciate it. I will definitely get a print out or sign up online to get full blood test result to see what the levels came back with.

I will speak to my GP today about getting retested with full thyroid function. I have previously tested low on folate but they just gave me high strength folic acid tablets.

Autoimmune diseases are also in my family. My sister has rheumatoid arthritis and so does my uncle, as did my grandmother. As well as that my sister, mother and my late father all have/had under active thyroid.

Many thanks again 🙂

SlowDragon profile image
SlowDragonAdministrator in reply toMsWhistledown

So you definitely need BOTH TPO and TG antibodies tested…..privately if necessary

Be aware 20% of Hashimoto's patients never have raised antibodies 

Ultrasound scan of thyroid if both antibodies are negative

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

MsWhistledown profile image
MsWhistledown in reply toSlowDragon

Than you 🙂

MsWhistledown profile image
MsWhistledown in reply toSlowDragon

that’s interesting re: soupybp post. I am always clearing my throat, wake up croaky and have weird tastes in back of my throat. Also suffer with light headedness and dizziness which has got worse this past week.

SlowDragon profile image
SlowDragonAdministrator in reply toMsWhistledown

That link you added….doesn’t seem correct?

MsWhistledown profile image
MsWhistledown in reply toSlowDragon

it was the link you posted in your reply. I have removed it - I copied and pasted it incorrectly.

MsWhistledown profile image
MsWhistledown

Update - after conversation with GP yesterday evening.

GP looked back at past 3 thyroid bloods and said first one in June 2022 was mildly elevated, next test 3 months later was normal and test in April was mildly elevated. She said this wouldn’t cause all the symptoms I am experiencing and my thyroid would be compensating for the “mild elevation”.

So, due to the symptoms she is sending me for some autoimmune testing for rheumatoid arthritis and also thyroid antibodies TPO and TG. Due to family history of autoimmune disease.

Will ask for print out of full range and levels today when I go to collect test paperwork.

Will post the levels on here when I have them. Would really appreciate your opinions.

Many thanks.

PurpleNails profile image
PurpleNailsAdministrator in reply toMsWhistledown

is this based on TSH? Getting the results will be interesting to see if FT4 was tested. TSH doesn’t cause any symptoms. The level of thyroid hormones do, If the TSH is raised , even by a little bit is means the thyroid levels are lower than they should be & thyroid has to work harder.

The doctor saying mildly elevation compensates to prevent low levels shows they are missing the point.

MsWhistledown profile image
MsWhistledown in reply toPurpleNails

Thanks PurpleNails. I do not know if it was just TSH which is why I am eager to get a print out of results. Unfortunately, they seem to respond very vaguely and not go into detail. The more I learn about this the more I feel I will know which probing questions to ask.

Yes I am not convinced by that response from the doctor “mildly elevated wouldn’t cause these symptoms”. I don’t understand why it is pretty much being dismissed. Hopefully print out will reveal more info and will post on here once I have them.

Thanks again.

MsWhistledown profile image
MsWhistledown

So, I have got a print out of my last set of blood test results (24th March) I have only been tested for Serum TSH level which was:

4.63 mIU/L 0.27 - 4.20mIU/L

There is a note beside it which states: “TSH mildly elevated but may not be of clinical significance. Provided patient is asymptomatic repeat in 12 months, or earlier if symptoms develop.”

Not very helpful then!

PurpleNails profile image
PurpleNailsAdministrator in reply toMsWhistledown

If TSH is above range it should be repeated in 3 months with thyroid antibodies.   Not in a year. Not testing FT4 is also terrible.  Lab should automatically test if TSH abnormal.  Can you see another doctor? 

MsWhistledown profile image
MsWhistledown in reply toPurpleNails

This is the third GP I have now seen in my surgery. She has added a thyroid antibody test to my blood tests taking place next week. But no T4 and not both antibody tests. So I am going to get tested privately for the full picture.

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