I finally found out my most recent TSH level result today which was 4.52 (this was a test done 2 months ago - having another done next week) I was seeing GP for another reason and asked. Have been really suffering with dog tiredness, absent mindedness and general malaise for at least 2 years - first reading was 3.38 - left it for a year - next reading was 3.89 - and after having blood tests done a couple of months later 4.52. I just wonder what happens next? Will I get treated if the level stays at 4.52 - or will I have to keep dragging myself around - so scared I will fall asleep at work - I literally live for weekends when I can sleep as much as I need!
How many times were you tested before you got t... - Thyroid UK
How many times were you tested before you got treated for your thyroid problem?
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meggiemog
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SlowDragonAdministrator
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 Thyroid antibodies are raised
See from your other posts that you have tinnitus....this is very often linked to low B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
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 primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
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_...
You are legally entitled to printed copies of your blood test results and ranges.
Very important to see exactly what has been tested and equally important what hasn't been tested yet
Frequently GP's only test TSH and FT4....completely inadequate
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.
Come back with new post once you get results and ranges
Thanks SlowDragon - full blood test was done - and I usually get a printout - but to be fair I have had other issues going on at the same time so I just let it go this time. I did pay for Medichecks to test my thyroid levels earlier in the year- this was the 3.89 reading which they just said was normal - had T3 and T4 done too - also in their 'normal range. NHS don't test anything but TSH. All other tests done were within normal range. I have also been tested for gluten intolerance- which came back negative. I have had scopes up and down my digestive tract and have to be careful what I eat and to add to the fun - have developed an intolerance to alcohol. Just to have a eureka moment would be great.
Can you add the actual results and ranges for TSH, FT3 and FT4
If TSH is high and FT4 near bottom of range that suggests problems
Definitely need BOTH TPO and TG thyroid antibodies tested too
Within range is often not good enough for vitamins
Eg B12 range is typically 210-780. Many people have symptoms if B12 is below 500
Vitamin D - ideally over 75nmol
Folate - at least 10
Ferritin at least half way in range
Many people are gluten intolerant not coeliac. The only way to know is to try it for 3-6 months
Looked up my medichecks results TSH was 3.82 - free T3 5.33 Free thyroxine 14.9 - this was about 6 months ago - and taken 1st thing in morning after no food. I paid extra for blood sample to be taken. The high reading taken 2 months ago was after a normal day at work - no fasting - and any readings prior would have also been like this. Things seem to have really escalated in the last couple of months as I feel exhausted 24/7 and my memory is terrible! Each reading taken has been steadily climbing. I will have my next blood test taken at the same time as previous at GP's so it will be a fair comparison.
We would always recommend getting the thyroid plus ultra vitamin test that includes BOTH TPO and TG thyroid antibodies and vitamin D, folate, ferritin and B12 too
Low vitamins are extremely common when Thyroid is playing up
You can have functional B12 deficiency. Bloods look normal, but not able to use it, perhaps because of other B vitamin deficiency
Supplementing a good quality daily vitamin B complex may help......but getting folate and B12 retested before starting
Should add I have tinnitus in one ear only - this is linked to hearing loss in same ear - And for that am waiting to see a neurologist- it's been a fun year! I asked my GP if this could be linked - he said no as my TSH level is not high enough to warrant so much damage.
Tinnitus linked to low B12 ... a neuroligical condition when low in range. Can you post your Medichecks results ...
I have terrible tinnitus but normal B12 levels. Any idea what else could be causing it?
What was your 'normal' B12 result ?
Active B12 102.00 pmol/L 25.10 - 165
I only have ringing in one ear.
That looks a good result ... 
Lora7again
Have you had folate, vitamin D any ferritin tested
Tried taking a daily good quality vitamin B complex?
Yes my Vitamin Dis 67.90 nmol/L 50.00 - 200.00 so I am using the spray and folate is 3.71 ug/L 2.91 - 50.00 so I have started taking tablets for that. Just lately since my hyper attack I wake up and I can't see properly at first it is all blurry so I am going to ask my GP in two weeks to refer me about my tinnitus in case there is another cause for it.
So both vitamin D and folate were low
Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
This would also improve B12 levels
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Getting thyroid and vitamins retested after 2-3 months improving vitamin levels
I had awful tinnitus which has massively improved since being diagnosed and treated for hypothyroidism. I had three blood tests - the first i was told was normal ( I seriously doubt that to be true now but my records were lost so can’t check it) I begged for the next one about 10 years later it came back hyperthyroid and the next one a few weeks later seriously overt hypothyroidism I only just got treatment in time to save my life. I had been in and out of the surgery for decades with all sorts of problems all hypothyroid problems 🙄
I have white noise tinnitus - so quite bearable - I know people get whistles and squeals- I just get between radio station buzz
I liken mine to having a tv in my head so I think it must be the same type as yours but at one time prior to treatment I’d get my hearing going on and off strange scratching noises and gurgling as well as the TV stuff plus I went a bit deaf it would make me quite miserable but now I can just ignore it. If I listen in to it I am surprised at what a racket it is!
I visited my GP surgery for FOUR YEARS complaining of feeling exhaused before, thank goodness, a locum tested my thyroid and found I needed levo. Disgusting!
I know how you feel! I unfortunately had a reading too low to treat - and am still not being treated yet - but obviously the level I was at was not at an optimum for me. 10 years ago my TSH was 1.6 - and I felt great then. At 4.52 I feel like a complete wiped out buffoon.
It was 20 years in my case and I even mentioned hypothyroidism was common in my family and could it be the cause of all my of odd health problems -
of course it wasn’t I was assured by the crystal ball 🔮 approach medics - no tests but who needs those with esp powers of diagnosis!
For me, I was tested with an over range TSH result for 10 years (7 blood test results that I have traced back so far), and not one gp who saw me mentioned it. It wasn't until 5 years ago when my TSH result reached 28 (0.3-3.5), and I was so unwell I was sleeping up to 20 hours a day and could barely walk, that I was diagnosed and treated. It is a common story with most of us, I am afraid.
Poor you - mine hit 110 😱 but I have read of it reaching over 200 in some individuals in my case that would not have been compatible with life! I felt utterly dire even when they got my TSH right down to 0.2 - 0.5, because I was not converting the T4 effectively to T3 if I took more T4 I just started getting really agitated like I was hyperactive it was horrible in fact all of it was horrible - it is terrible we are suffering so unnecessarily - it has damaged my heart and lord knows what other problems that will reveal themselves in time. NDT made me feel much better.
Exactly! I too have read reports from sufferers who had ridiculously high Tsh results. One i can remember being somewhere around 250, and i couldnt fathom how they were still breathing with it so high.
I too cannot tolerate t4 only meds as I felt the same way. Quite a few times I was convinced I was suffering a heart attack, but it was all due to poor conversion. NDT has been a vast improvement for me, but since my hysterectomy in Feb this year, my thyroid has been going crazy with constant ups and downs and I just can't get it to settle as yet, but I am working on it 👍
Alcohol intolerance was a sign for me it was so weird as well as only bad ringing in one ear, I spent about 7 years chasing up the doc with an over range TSH and low T4/T3. Eventually I went private with a recommended thyroid UK doc and got a prescription. It was expensive but now I buy my own levothyroxine which is some much cheaper. NHS don't approve but at least now I'm so much better. Maybe you should consider that and get yourself well. You will wait till hell freezes over with the NHS. X
I remember I had to stop drinking alcohol because I felt so dire the next day even after half a pint of larger which is hardly excessive it never occurred to me it could be related to the hypo. I put it down to malaria (P. vivax ☹️) and my liver not working as well. I still have massive malaria antibodies after 35 years since my last attack - I can’t give blood because of them. I rarely drink alcohol maybe once or twice a year and always regret I did the day after.
I do get vertigo - but it's rare. I often feel like I am walking on a slope when I am not though and some of my motor skills are not as they should be - if I had to do a sobriety test (walking in a straight line heel to toe) I would fail every time - can't balance for toffee! ENT suspected an acoustic neuroma- but after 2 MRI scans that has been ruled out. GP thinks it is 2 things at same time - thyroid not helping. I find work a real struggle with depleted hearing and chronic fatigue.
I had a spell of "walking like a drunk" and Googled it - I was not drunk btw. It had to do with a creeping condition of arthritis where my cartilage was wearing out at different rates in each knee. Now it's all worn out in both knees, very painful I might add, so while it is difficult to walk, at least the pain is equal and I am not wobbling around.
I wasn't treated until my TSH had gone above 13. When tested a couple years before that, the TSH was 3.9 and ATPO >1300 but GP said I had no problems with my thyroid at all. I wish I was as knowledgeable back then as I'm now.
I kept going back to the doctors for over 10 years complaining of thyroid symptoms, I was eventually diagnosed when my TSH was 5.5 and I could hardly walk I was so ill.
A lot of people with thyroid problems have tinnitus
Felt unwell for 15 years. Went to Dr’s numerous times, I knew something just wasn’t right. Brushed off by every NHS Dr. I saw, wouldn’t even do me a blood test, shot down everything I said (even though I’m in the job) Exasperated I paid for a private appointment. Dr. Actually listened & agreed maybe thyroid so trialled me on 25 Levothyroxine, whilst awaiting private endocrinologist. Endo confirmed & the rest is history.
I know that NHS Dr’s are told to restrict everything from blood tests to meds.
I did 20 years NHS & got out as I wanted to be able to correctly diagnose & treat my patients, not fob them off when I knew how ill they were. I now work privately as bank staff & give 100% care. Happy days.
Good Luck 👍
In answer to your basic question: Zero.
I was "lucky" enough to have had a friend tell me the story of her son. They (my friend and her husband) went to visit their son at university just before his finals. They just went to cheer him along because he sounded a bit down and they didn't want him to get dispirited just before his exams. They found him in bed, sleepy and just not wanting to get up and do anything, anything at all. They whisked him off to the docs who found him to have a failing thyroid and severely hypothyroidic.
When I found myself tired out and falling asleep at work, I immediately went to the doc and TOLD him to check my thyroid. I did not say that I was tired out all the time, whatever was the matter with me? I was lucky enough to have a pretty good idea. He did indeed check out my thyroid, and the rest is history. I had developed thyroid cancer, I had an ultrasound, a fine needle analysis and my thyroid was whipped out during the next slot in the operating theater - all happened very quickly.
I was told by ENT consultant that I didn't have an ENT problem - hence neuro department next stop. The tests you have mentioned is kind of what I expect from Neuro to be honest. I know it's not positional vertigo - when I do get dizzy it is only a minute or so - but so intense I feel like my head is going to explode and I feel my heart pounding . It's usually when I bend down suddenly - like reaching down into a low cupboard on an angle - I have to sit down and fix my eyes on something and usually relax as much as I can as it makes me feel really ill. I always end up with a corker of a headache after too. I am wondering if I might have nerve entrapment in my neck on that one.
I think I remember going to drs with symptoms, he said I was subclinical and to come back in 3mths, I lasted 2 and ten that test cane back at 11.something so I started treatment. Years later I got all my history and my first test was over 5. With hindsight I now realise how ridiculous this ‘over 10’ before treatment is. I was on my knees with symptoms but I only stated tiredness and the fact that my SPD hasn’t seemed to diminish with having had my baby as it should have.
Tiredness was dismissed because I had 4 children 5 and under. Looking back my condition was soooooo dangerous, co-sleeping, driving, naps, in bed a half hour before my husband got home ( 4children upstairs with me and ‘playing’ with a 5yr old told to wake me if Daddy wasn’t home yet 😢) I was not taken seriously at all! With hindsight, I just think OMFG!
God that is so awful it makes me want to cry for you and your poor children - what a stupid doctor putting you through that hell. I hope you are ok now
Looking at all these replies I realise that I do have a good GP looking after me. He has said if my level is still over 4.52 at next test I will get treated. He says years ago people were treated when it was not needed and now they have to prove without doubt there is a problem before medication is given. Fortunately my TSH has just kept rising gradually - not going down. I have been feeling pretty run down for about 6 years now - but in that time have had anti reflux and hiatus hernia repair surgery and a full abdominal hysterectomy - so a lot to adjust to! I can't complain at the way I have been looked after GP wise - hospital consultants are another matter- you either get someone totally brilliant or dismissive and unhelpful - of those I would say I've had a 50-50 split!
In the rest of the world you’d be treated if TSH went over 3.5. I can’t believe the UK has superior thyroid treatment levels to everyone else on the planet - our medics are in the dark ages. I think keeping you ill for 6 years is cruel as for the claim people were being given unnecessary medication I find that risable - we are being denied the thyroid hormones we require to function normally. I had to plead to even get a test and I was horribly overt by this juncture. I’m glad I don’t see your doctor I’d hit the roof if he told me that. I’d tell him straight I am not a number. He is a slave to TSH results - what about the patient why does he think it normal for you to feel ill for 6 years as your results get worse and worse - and to blame non existent overmedication for keeping you unwell - where on earth does he get that fiction from? Moreover it will be affecting all aspects of your health.
Being fair - the GP I am now seeing is not the one I was seeing 12 months ago. My hubby suggested seeing him as he is very good and very thorough. He was right - more done in 6 months than I have had done in a long time.
That’s good news 😉 hopefully you will get thyroxine after your next test - it ought to help massively as long as the doc gives you enough of it, 50mcg for starters and increases of 25mcg after 6 weeks and a blood test until you feel well again (TSH between 0.2 and 0.5, free T3 and freeT4 in the upper third of their ranges ought to get you optimised but some doctors don’t know this and don’t aim to get the bloods in the best parts of the ranges - you may need to insist these levels are attained) good luck with it ☘️🍀☘️
It took years before I was diagnosed and I just read my medical record when I was seeing my Doctor they were writing things like delusional refer to mental health when my hair was dropping out and my vitamin D level was 6 and my ferritin was about 16 ... it makes me so angry! I know other women have gone though the same crap as me.
I know why they ruled out Menieres with me - was due to the fact I do not have dizziness for any long period of time. To be fair took me ages to get ENT appointment and the nurse practitioner was more helpful and thorough than the consultant.
I can’t find my mention of automatic thyroid antibody tests if you are sectioned - where are the guidelines stating this?
That is really good protocol. There have been a few comments on here from women who were diagnosed schizophrenic and even given ecg when all that was wrong was hypothyroidism. Perhaps it happens more than we realise there is even one theory that bipolar and schizophrenia may even have an origin in thyroid disorder vía as yet unknown thyroid hormones. I know T3 has been very successful in treating rapid cycling bipolar.
I was one of them!
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