Hi all, it's so comforting, to know that you are all there ready to support each other when its needed. I am relatively new to thyroid disorders, so don't really know what is supposed to be normal.
I was first diagnosed in February this year, and was put on a dose of 50 levothyroxine, I felt so much better a couple of days later, but after a week felt worse again. I was then put on a dose of 100. Felt so much better for about a month. Then started to feel tired again, so my dose was increased again to 150. Felt well for about 3 months. Then started to feel tired again, with all all the other classic signs, dry skin, constipation etc. Asked for another blood test, as soon as I had this, increased my dose to 175 myself. I spoke to a different doctor, but from the same practice, who said I was on way to high a dose and my levels were in normal range and my t3 was almost 0, and put my dose back down to 100. Was also concerned as my fatty liver results were high and said it was probably because I was on too high a levothyroxine dose. I asked if I could see a specialist, but he said no one would take me on as I have normal results. I am now feeling really tired again and have all the usual symptoms back. But my doctor has said I cant have another blood test til the end of November as I only stopped taking the higher dose at the end of September. What do you think of my story, is it all in my head as my doctor suggests, or is it possible to have normal thyroid levels but feel ill?
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Skye45
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Many doctors are ignorant of how to treat hypothyroidism. They tend to ignore symptoms in favour of the TSH level, which is wrong because TSH isn't a thyroid hormone, it a signal from the pituitary to the thyroid, it's the FT4 and, more importantly, the FT3 levels which should be used to adjust dose, along with how we feel.
After initially being prescribed Levo, increases should be in increments of 25mcg, as should decreases in dose, any bigger dose changes means we can easily miss our sweet spot.
So to be able to offer you any helpful suggestions, can you please post your test results and - very important - the reference ranges as well (these vary from lab to lab.
If you don't have them then ask the receptionist at your surgery (not the doctor) for a print. Don't accept hand written or verbal results, make sure you get a print out and the ranges will be on there.
If you have past results you can post them, along with what dose of Levo you were on at the time of the test and say what change was made to your dose.
For a full picture you need
TSH
FT4
FT3
Thyroid antibodies
If you've had thyroid antibodies tested on the past, we're they positive (over range) as this would confirm autoimmune thyroid disease aka Hashimoto's.
And because we Hypos need optimal nutrient levels we also need to test
Vit D
B12
Folate
Ferritin
Also important to know is that thyroid tests should always be done under the same conditions every time. We always advise:
* Test no later than 9am, this is because TSH is highest early morning and lowers throughout the day.
* Do not eat before the test as eating can lower TSH.
* Drink water only before the test, this is because coffee can affect TSH (and possibly any other caffeine containing drink)
* Last dose of Levo should be 24 hours before the test, this is because if you take your Levo before the test you will get a false high result (the result will show the dose of Levo recently taken), if last dose is taken longer than 24 hours before then you get a false low result.
Also I was on tablets for all of the above vitamins but was told to stop taking them as that could be why my liver results were high. Will start them again.
Please retest first, then only supplement what is needed at the appropriate dose. Post results/ranges plus units of measurement for Vit D and B12, for further help.
After reading your post I feel like I’ve blindly accepted everything my dr has told me each year without questioning my results. I’ve been hypo since having my 2nd daughter aged 26, I’m now 52 and have spent years thinking I’m going around the bend as I feel so awful all of the time. I’ve had numerous small increases/decreases in my levo meds as they say I tend to run just over or under the normal range of 5, was on ferrous fumerate for years until menopause and they decided I didn’t need it as not menstruating anymore, now on vit D and propranolol for chronic migraines and panic attacks. After another Drs visit last week my yearly bloods were brought forward as I feel so ill, surgery called me on Monday to say everything is normal except my serum TSH which has gone from 6 to 18 so they’re putting my levo up to 125 from my usual 100. I had my blood test at 10.30 after getting up, taking levo, and eating breakfast - everything I now realise I shouldn’t have done! Not one Dr has ever explained this to me, I really need to try and educate my self on normal ranges for someone already diagnosed and see if there’s anything else they should be checking! I’m due a retest for TSH in 8 weeks. Thanks for posting the do’s and dont’s.
I could have written the first part of your post. My hypothyroidism started a few months after the birth of my second child at age 25 in 1973, my dose of Levo was increased/decreased without any explanation, and it wasn't until 2015 when I joined this forum that things fell into place and I have taken charge of it myself since then.
Doctors have a lot to answer for, I think there are probably hundreds of us on this forum who have wasted many years of our lives and missed out on so much due to doctors not knowing how to properly treat hypothyroidism and we patients also being ignorant of it through no fault of our own.
me too.. spent far too long believing they knew what they were doing, and doing what i was told, 'only' since 2003 in my case, It was 4 yrs after 2nd child i got diagnosed , but i'd been getting slowly worse since i was pregnant.... nobody checked thyroid till 4 yrs later. Only found my way here in January.
Your GP is correct that there’s no point testing thyroid levels until 8 weeks after any dose reduction
However you could have thyroid antibodies, vitamin D, folate, ferritin and B12 tested NOW
Frequently when hypothyroid we have very low vitamin levels, especially if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease...so it’s likely
Presumably you haven’t had vitamins or antibodies tested before?
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
Do you always get same brand of levothyroxine?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Thanks for your post. I have had vitamin tests before but as was on feroglobin at the time they have come back normal. Have always taken levothyroxine before a test. Usually about 4 hours previous. Will get all my blood results tomorrow.
The tablets I am on are Almus. Have been on these all the time except one month a while ago. Too long ago to say weather they made a difference our not.
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.
I spoke to a different doctor, but from the same practice, who said I was on way to high a dose and my levels were in normal range and my t3 was almost 0, and put my dose back down to 100.
I suspect there has been a miscommunication somewhere. It is unlikely a doctor would mention a T3 level close to zero but they might say that TSH was close to zero.
If your T3 is close to zero it would explain how unwell you feel. The TSH being close to zero is not a problem it is the Free T3 and the Free T4 which count and what the balance is between the two.
As SeasideSusie said, you need a copy of your results including the reference ranges. Ideally you would get copies from before you were diagnosed until now. Say, results from the last two years.
Was also concerned as my fatty liver results were high and said it was probably because I was on too high a levothyroxine dose. I asked if I could see a specialist, but he said no one would take me on as I have normal results.
I have never heard of fatty liver being caused by too high a level of levo. And you would need an ultrasound of your liver to diagnose it. If he was referring to your cholesterol as being high, that is a sign of under-medication in a thyroid patient.
Medicate the patient properly and their cholesterol levels will drop.
Thank you all so much for your help, will ask for all results tomorrow, my doctor doesn't put them online. I have had all vitamin deficiencies tested before all were normal, but I was on multivitamin tablets and feroglobin tablets at the time. Have stopped taking them a month ago on docs advice. However never had a cholesterol test done.
No, it's not all in your head! Your GP just doesn't understand thyroid disease.
SeasideSusie and SlowDragon have given you lots of good advice
Just wanted to assure you that diagnosing and treating thyroid issues is not all about numbers as modern medics seem to think, it is also involves you and how you feel!
If you can post recent lab results including ref ranges then members can advise further....you do need to wait 8 weeks before re-testing to allow the body to adjust to the new dose.
Hello , just wanted to say Hi, so you don't feel ignored x
I'm too dozy to write any sense today , but i was exactly where you are now 17 yrs ago, and what happened next was me believing the doc saying , your thyroid hormones are normal now , so whatever else is wrong with you is something else ( or in your head !)
17 yrs later i've read loads and learned loads , and it's not just me that's not fixed with 'normal' results on Levo, i'm not the exception, and if it's all in my head , it's really odd how many other thyroid patient's have imagined exactly the same things in their heads. Surely we'd all be 'imagining' different things. It's also really odd how many of us then get told we've magically developed CFS/ME/Fibromyalgia etc, etc, at the precise time we get to what doctor decides is an adequate dose of Levo and we say 'it helped for a while but now i feel rubbish again'
Hopefully now you're here you'll learn how to improve things yourself.
So step 1 ... trust yourself , you didn't imagine whatever thyroid blood test results led to you being given Levothyroxine, (they don't give it to just anyone).... so trust yourself now, if you don't feel right , you arn't right.
step 2 ... do not trust doctors telling you everyone else is fine on Levo. If this is what they believe they are not reading research or listening to what people tell them.
step 3... do not take 'normal' to mean anything useful as far as your results are concerned.
Get hold of your actual results since diagnosis, you have a legal right,
You want to see;
TSH (Thyroid Stimulating Hormone) plus lab reference range... will have been done
FT4 (free T4) + lab range.....Possibly done
FT3 (free T3) + lab range.....unlikely to have been done
They will look like this 0.00 [0.00- 0.00]
You also want to know if there has been a test for thyroid antibodies at diagnosis;
TPOab (Thyroid Peroxidase antibodies) + range
Or TG ab (Thyoglobulin antibodies)+range
some background ;
TSH is a message sent from pituitary to thyroid gland saying 'please make some more T4 and T3' a high number means we need more, a low number means we're satisfied.
T4 is a storage transport form of the active thyroid hormone which is T3.
Levothyroxine is synthetic T4 (LT4)
Just think of T4 +T3 results on one end of a see saw, and TSH results on the other end and you'll understand how one affects the other.
Hope some of this is some use , as i probably shouldn't be in charge of a keyboard this afternoon
But it's good to see you've found your way to looking for knowledge at an early stage, rather than fannying around believing it's all in you head, and accepting it for decades like i did
x
I've done lots of reading now and believe this forum is a safe place, with respected scientists and researchers on it.
Hi all, I have had my blood test results given to me, from February when I was first diagnosed til September. however cant seem to load them to the site.
It seems all my vitamins are fine well within the middle of the range. But I was on tablets for these at the time. My tsh level was 0.05 and free t4 of 16.8. This is when my doctor said I was on to high a dose and put it down from 175 to 100. However all other thyroid results are not on the form(results from July are missing and the original ones from February are missing). The only ones that are there are from March and it just says normal there are no actual levels on the form.
Glad you're educating yourself from the start! For most it takes years.
I will tell you from my experience that my liver enzymes( ALT/AST) were over the reference range and flagged high when my Levothyroxine dose was too high. My total thyroxine levels were over range.I was self medicating. For about seven years my T4 levels were elevated above the reference range and it tripled my liver enzymes but not over range. Now that my T4 levels are just at the top of the range or a tad under they have significantly gone down. As far as I know I have no symptoms related to fatty or damaged liver.
What they think is normal is just a numbers game to them. It took three years of symptoms for me to finally compare all my labs and realize there was a problem.
Does anyone know if thyroid function tests on a blood form means all tests ie tsh, ft4 and 3 and antibodies? Have been given form for a new test.
Also having digested all my previous results that I had been given yesterday. All vitamins were fine except folate at the beginning, I was on tablets at the time, and now I am not, so I will ask for it to be retested. Also I was not given the results of any thyroid results except the very last one from the beginning of Sept. Have not been given the previous 4!
hi again, TFT thyroid function tests, may only mean TSH , or sometimes TSH +FT4. It's sort of up to the lab , there's a thing called cascade testing , so only if the TSH is out of range will they test FT4 and only if both these are out of range will FT3 be tested, but this seems to vary by area and lab as to what actually happens. Sometimes even if a GP specifically requests FT3 it still won't be done. Some people have less trouble getting FT4 done than others. some can get FT3 occasionally, some not at all. It's a bit of a mess frankly.
Well done for taking the first step in getting your results , sadly this is often a marathon not a sprint . You need to get used to the feeling of banging head against brick wall , but carry on regardless. If this is the only information you've been given , go back and say your request has not been dealt with yet ,and you still require you results and ranges.
Every blood sample taken comes back from lab with actual numbers and ranges, Labs don't just report 'normal'. So the information is in existence somewhere on GP's records even if they haven't given you access to that bit yet.
Re. the test you do have of TSH 0.05 / FT4 16.8 that led to a reduction from 175 to 100 ;
These results need the lab ranges that came with them in order to interpret them, were you given those ?
That TSH will be low on any range and will explain the reduction (from GP's point of view ! cos they often only look at TSH ), however a drop from 175 to 100 is a knee jerk reaction , dose adjustments should be in 25mcg (or even 12.5mcg in my opinion)
The FT4 of 16.8 which is far more important than TSH in deciding dose adjustments, could be mid range or over range depending on the range ,( some ranges are 7.9-14 some are 12-20 plus many other variations ) but if yours turns out to be within the range then arguably you didn't need to reduce at all or only by a tiny amount.
the FT3 is more important than any of them, since it tells you how much active hormone is in your blood , (T4 is inactive , just transport) and if that is over range then that does indicate overmedication and a reduction is correct (usually!, there are no rules here everyone is different)) The NHS in their wisdom don't test this one very often.
If they get stroppy about giving results you have to get enhanced access via online access which requires ID evidence to set up, or use the previous method of requesting SAR ( subject access request) which takes a bit longer and also requires ID, but does still operate . That is how i got mine for 20 + yrs . SAR form from reception, (filled in to request "all test results and GP appointments, reason for attending ,and treatment offered since X date" ) then show ID, then receive copy on password protected disk within about a month.
The receptionists spent 20 minutes saying they didn't know how to do it now , it didn't exist any more , you have to go online now , looking everywhere in the computer for an SAR form to no avail etc etc.
Then i said , do you not have some left over forms already printed out somewhere, like in a filing cabinet ? Receptionist swivels round in chair , opens top drawer behind her .... et voila ! took 2 seconds , in the first drawer she looked in .....
Remember , you have a legal right , they are your results , as long as you don't want to see them before a doctor has seen them , you can have them, and they do give in... in the end. They won't be happy about it tho'
Hi, my results show my tsh when 0.05 was in range of 0.34-5.60 and t4 when 16.8 range 7.50 -21.10. So I guess this was high, however had tablet in morning and loads of coffee at lunchtime. Will phone doc and ask for all tests on thyroid and keep on at them for the other results. Thanks for your help. X
So that FT4 was approx 2/3rds of way through range , so not high. Somewhere on this forum is a link to a calculator that works out % through range, it's in polish , but works fine once you realise 'oblicz' is the button to press for the answer !
Sorry i can't find it , but someone else will have it .
TSH is lower than they'd like , but from my own research the 'risks ' associated with low TSH don't start till <0.04, so for my two penneth , i wouldn't have reduced on those results unless an FT3 had shown i was actually overmedicated , or i had symptoms of overmedication ie , fine tremor in outstretched hands , feeling hot , fast heart rate etc. A very small reduction of 12.5 may well have been enough to bring TSH back into range.
Thanks, haven't got t3 results yet, hopefully will get them today. Certainly not having fast heart beat, or feeling hot, was completely opposite. Cold and slow heart rate if anything. Thanks again. X
There probably won't be an FT3... NHS think the TSH tells them all they need to know....
(but it's actually only as useful as touching the outside of a teapot to see if there's enough tea in it for another cuppa. You can tell its warm , but it might be empty now if someone just emptied it .... and you can tell it's cold , but it might have tea in if someone just filled it a second ago . Much better to look inside the pot and see if there's any actual Tea 4 and Tea 3 inside)
I agree with humanbean... how odd that they 'forgot' ? to give you your thyroid results..... but we've both become very cynical....
I doubt you will have any T3 results to pick up from the GP. They sound clueless at your surgery. Your first doctor increased your doses too much at a time and the second dropped you like a stone and panicked.
Most of us here have to get our own blood tests done privately using Medichecks or Blue Horizon labs or even the new NHS private lab, Monitor My Results I think they are called.
But see what they come up with and most importantly, from now on always take the blood test as has been described above and keep all your records in a file. They come in useful.
Will phone doc and ask for all tests on thyroid and keep on at them for the other results.
I would suggest just asking for blood test results from a particular date onwards, rather than specifying that you want just thyroid results. Keep your request as simple as possible.
Also, for getting hold of results you don't need to speak to a doctor - in fact avoid mentioning it to a doctor - just ask the receptionists.
I have all results from all tests from February, but the thyroid ones were missing from the list! Have asked for them again, told I will be emailed them today. Thanks will use the calculator.
It's rather weird that they would leave the thyroid results out, but give you everything else. I wonder why they did that? If any surgery did that to me it would make me paranoid!
Hi, just had all results including thyroid through, it does seem that apart from first test when diagnosed, all results have been normal, and slightly hyper as of late. But never had antibodies or t3 tested, will be speaking to doc tomorrow so will ask for these to be done.
My liver results were high from the start as well, so cant be levothyroxine causing this, cholesterol was fine though.
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Hi im new and looking for advice on hypothyroidism, I am very symptomatic, and had blood tests.
Surely I am hypothyroid? Very frustrated
Hypothyroid, fat, no energy but I am not a sufferer of CFS!
