I had my tft bloods done on Friday and on Monday morning (very early) had a text to contact my GP with ref to them. I had a telephone appointment with her and she said that my tsh was 14.9, my previous level in November was 9.78, so she was prescribing me 25 mg thyroxine to start on and would like retests in 2 months. Even though I have been waiting for this, I’m really anxious but hey ho. I have tried to get my T3 and T4 but no luck, all I get is they are both normal. Two doctors are both reluctant to give me the exact figures which makes me suspicious, should I be? By the way, I had RAI in May 2018 for thyroid nodules, after a partial thyroidectomy in 2015. I’ll be collecting my meds later today and starting them in the morning.
Starting on thyroxine tomorrow : I had my tft... - Thyroid UK
Starting on thyroxine tomorrow
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Kimkat
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SeasideSusieRemembering
Kimkat
Don't worry about FT4 and FT3 at this stage, you have a high TSH and you've got your Levo, so that's all that matters at the moment.
The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their ranges. So further down, when TSH falls into range, that's when you need to know your FT4 and FT3 levels. Many doctors are happy just to get TSH back into range, regardless of where in the range it may be. If it's high in range the patient will very likely still be symptomatic but the GP will ignore that because TSH is in range and that's all they want to see.
Doctors often don't realise that TSH is not a thyroid hormone, it's a signal from the pituitary to tell the thyroid to make hormone if it detects there's not enough. It's the thyroid hormone levels that tell us what we need to know, i.e. do we have enough thyroid hormone, and it's only FT4 and FT3 that can tell us that but many doctors seem oblivious to this fact.
So for now, ensure that you are retested 6 weeks after starting Levo and that you get an increase in your dose, then the test should be repeated every 6-8 weeks, increasing dose if necessary, until your levels are where they need to be for you to feel well.
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, coffee affects TSH so it's possible that other caffeine containing drinks may also affect TSH.
* When taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use Biotin in the assay).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
I have tried to get my T3 and T4 but no luck, all I get is they are both normal. Two doctors are both reluctant to give me the exact figures which makes me suspicious, should I be?
They are breaking the law. We are legally entitled to a copy of our results, they cannot charge and we don't have to give a reason. Most doctors don't like us knowing much, or understanding our condition so they often fob off requests for results. This is why we always advise never to ask a doctor, always ask the receptionist for a print out. They may have to get permission from the doctor, who must have seen the result first before you can have a copy, but you cannot be refused. If you are, then just remind them they you are legally entitled under the Data Protection Act and the European Data Protection Regulations to have a copy, will they please arrange it and you will pick them up at their convenience. If they want to be awkward they can make you wait 30 days and they can also request that you put in a Subject Access Request, hopefully they wont.
SlowDragonAdministrator
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 been left hypothyroid for long like and/or autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Have you had vitamins tested? Or thyroid antibodies
Bloods are 6-8 weeks after each dose increase
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
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 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
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Being left until TSH reached 10 after RAI is barbaric
Hi SlowDragon
Please can you give a link to the recommended TSH levels? (I know that you are correct, and as I take T3 mine is supressed) your link to the NHS article is useful ammo for my mum who is symptomatic and on 100 of Levo (for some years). Her GP just says to her that 100 is usually enough for most people. I think her TSH is 2.5 (although I think she doesn't leave her dose for 24 hours)!
TIA
Suggest you get her to do full thyroid and vitamin testing...most important results are Ft3 followed by Ft4
If still symptomatic dose should be increased as per New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
Aim is to bring a TSH under 2.5
gp-update.co.uk/SM4/Mutable...
Obviously when we are also on T3 then TSH is almost always suppressed
btf-thyroid.org/thyroid-fun...
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
Thank you for all of this info. I have had to practically beg for my blood test this time, that should have been taken at the beginning of March. My endo told me in November at my last appointment, that my GP would call me forward at the appropriate date( he was a new one, usually I would be given two blood sheets and arrange my own tests at the hospital or GPs) That didn’t happen and I have been trying to get one since the middle of March. The endo did say to me at that time ‘we need to keep an eye on your levels now that they are creeping up’! So do you think that he is using the 10 mark as my level?? This is worrying 🙁
Suggest you get hold of historic results from BEFORE RAI and after
See exactly what was tested
Low vitamin levels tend to lower TSH...hence essential to always test Ft4 and Ft3
TSH is especially unreliable after being hyperthyroid
Median TSH graph of healthy population
healthunlocked.com/thyroidu...
Hi I left a response a few days ago, would you mind taking a look, I would be grateful, thanks in advance.
After RAI I was still hyper for a long time, so I can’t imagine that they would give me thyroxine whilst I was still in that state. I have had regular Three month tests since then.
25mcg is only the starting dose for the elderly (over 70) or for those with a known cardiac arrhythmia, otherwise the suggested starting dose in the BNF (British National formulary) is 50 mcg, with a repeat blood test at 6 weeks and dose increased in 25mcg increments until TSH around 2 or symptoms have resolved.
I’m 66 this year and have a pacemaker for heart block.
The only info I have here is a few letters that copied me in, from GPs letters. Just to let you know my history, I had a partial thyroidectomy in 1982, when I was 29, was on carbimazole for around 4 years then weaned off completely. I then began feeling that things weren’t right in 2010 and so began my journey. I was found to have multinodular goitre, so had two lots of FNA which were reported as Thy3a and Thy2. At that time I was put on to carbimazole and the dosage was moved up and down like a fiddlers elbow over the next couple of years, so I was either hyper or hypo, so felt pretty wretched. I then had another partial thyroidectomy in 2015 back onto carbimazole, same again, reduced and increased dosage which then brought me to the conclusion that RAI was the only way to go. So here is the only results I hold...
aug 2017 tsh 0.05 t4 19.7 t3 7.0
May 2018 RAI
July 2018 tsh 0.09 t4 14.0 t3 5.0
Oct 2018 tsh 4.08 t4 13.6 t3 4.8
Mar 2019 tsh 4.18 t4 15.5 t3 4.5
Dec 2019 tsh 9.78 t4 norm t3 norm
May 2020 tsh 14.9 t4 norm t3 norm
Sorry it’s long winded but I hope this helps.
I’m just about to order a medi check blood tester. Do you think it’s worth waiting until I’ve been on thyroxine a while or should I just go for it? By the way, I have checked for results online and most of them are dated 2015 or before and even then they’re not comprehensive.
Hi
For a member to get alerted to a response...you need to click reply
This last reply was in effect ..to yourself
Yes waiting 6-8 weeks after each dose increase to do any test
starting on very low dose can make You feel worse....but you have been hypothyroid a longtime (since at least Oct 2018) so it’s important to start slowly
You could get a separate vitamin D test now ....
Improving nutrients improves conversion
healthunlocked.com/thyroidu...
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose ... though your GP is likely to be extremely cautious on increasing dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
BMJ also clear on dose required
Yes sorry I realised my mistake re replies this morning. At the moment I don’t feel any worse but I’ve only been taking it for 3 days now. Also I have a pacemaker for heart block so that probably another reason for the low dosage. I’ve been in a vit D3 supplement for five years now, since I broke my ankle and after a bone scan, even though they said my bone density was in pretty good shape, it was worth taking it. Thanks so much for the info.
So how much vitamin D do you supplement
When was vitamin D last tested
Important to test twice year ideally, certainly annually to see if levels are optimal, at around 80nmol minimum and around 100nmol maybe better
The only results I can see online are from 2015 unfortunately, nothing since then but I take D3 400iu, I’ve always taken one a day but notice on the pack that you can take 2 so I started taking the increased dose last week.
Recommend you buy vitamin D test kit £29 NHS postal kit...very easy to do
Many people who have thyroid issues need higher dose than average
Will do, what about folate, ferritin etc?
Obviously you can wait and get them all tested together at next full thyroid test
We should only add one supplement at a time anyway....so getting vitamin D tested now would perhaps be a good step ...unless you can persuade GP to test for you
Morning, I have received my test results for my private VitD blood test this morning:
D3 : 55.2 nmol/L
D2: 2.8 nmol/L
Total: 58 nmol/L
So this is classed as adequate but looking at the dose I am taking now through the spray, to what I used to take in tablet form, I probably was underdosing for a long time.
My Endo appointment this week was changed to a telephone appointment and I’ve just had a phonecall from his secretary cancelling it with the promise of a new one in the post, surprise surprise!
Vitamin D
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
But on levothyroxine , improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Also read up on importance of magnesium supplements when taking vitamin D
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Yes I started on the VitD spray after your recommendation around a month ago. I’ve just completed my first 28 days on Levo and I have to get my bloods done for the Gp in another 5/6 weeks when I will ask for full bloods if possible. If not I’ll pay for them myself. As I said earlier my June appointment with the Endo has just been cancelled so I don’t know when I’ll be getting another one, it’s very rare that I get my dated appointment, they always delay it for one reason or another, very frustrating. So perhaps if my VitD elevates, that’s good, yes?
Think I’ll get that done myself, it’s too much like hard work getting past our receptionist at our GPs 😄 and thanks again.
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Hi, just had my bloods from the GP after 2 months on 25mg Levo - tsh is 7.53 (0.3-5.0) and T4 is 17.7 (10-18.7), previous results In May were tsh 14.9 and T4 normal range.
I had to ring up to get them and was told by the receptionist that they were in and ‘put to file’ which means the GP is fine with them! I explained that I would like to discuss them with the doctor and told I would have to make a telephone appt for today. I actually got the surgerys sister today and as she obviously knows nothing about thyroid results, she just said they’re within range so no need to increase my thyroxine, is that ok? I then asked her for t3 and 4 but she said she only has T4. I’m thinking of ordering my own blood tests online but notice that my endo wants me to have them done again prior to his phone appt in September and the test sheet says tsh/t’s/ fb, so I’m thinking maybe I should wait but I’m so anxious. I was at the hairdressers last week post Covid and she was really surprised at how much hair loss I have had since she last saw me in February, also I am practically starving myself to try and maintain my already overweight body.
Make an appointment with GP - face to face or on phone
Ask for 25mcg dose increase in levothyroxine so that on 50mcg
Bloods should be retested in 6-8 weeks after EACH dose increase
Aim of levothyroxine is to increase dose up until TSH is under 2 (many need TSH under one,)
Blood test should always be as early as possible in before eating or drinking any thing apart from water and last dose levothyroxine 24 hours before
NHS guidelines are quite clear most people need levothyroxine of roughly 1.6 MCG per kilo of your weight ....
In that case I should be roughly on 100 mg. I did have an early morning test, no food or drink except water prior to testing and made sure that I had my Levo 24 hours before. What bothers me is that my results were just filed instead of discussing with me any other action, it’s not on that we should have to look into this ourselves. When I went for my blood test I asked the sister if she would go full bloods but was told that she could only do TFT and wasn’t allowed to change it. Should I just go ahead and pay for private tests, or wait for my next lot in August?
Depends...
I would try GP for 25mcg dose increase in levothyroxine
If they refuse (very unlikely) get full testing then to help in another appointment
If you get dose increase in levothyroxine..
Consider doing FULL thyroid and vitamin testing after 6-8 weeks
And ALWAYS do full test before seeing any consultant
Ok thanks for that. The endo wants me to have full bloods, tsh and t3t4 done prior to my appointment but that won’t be until the end of August. I’m considering speaking to his secretary and asking her, it might put me in a better position prior to the spot.
You have time for dose increase to 50mcg and bloods done before appointment (just)
Ask GP to test folate, B12, ferritin now as well
Can i suggest the Sister needs her eyes(or maths skills !) testing , if she thinks TSh of 7.5 is within a range of [0.3-5].
Honestly , they treat TSh like a God when it suits them , and ignore it when it doesn't. So yes OK, Ft4 is near the top of the range so in theory that's good , but if you can afford to, i'd want a full set including TSh/Ft4/FT3 at the same time. It would be useful to see how much T3 you are converting out of the Levo.
If it was me , and i still felt crap ,i wouldn't accept waiting until Sept on only 25mcg, without seeing an Ft3 result as well.
I don't have any experience of the after effects of RIA, or Graves(? assuming that's what you have) though.
nice.org.uk/guidance/ng145/...
See point
1.3.6
Did you take levothyroxine before blood test?
Ft4 is quite high
Have you had vitamin D, folate, B12 and ferritin tested..
If not ....ask GP to test
Did private vit D as you recommended and results were: D3 55..2nmol D2 2.8 total 58 nmol and classed as adequate. Have started using mouth spray rather than tablet form.
Which brand of levothyroxine are you currently taking?
Generally recommended to stick on same brand at each prescription
First 2 months were Mercury Pharma and the packet I am using now is Wockhardt UK if this is what you mean.
Have you noticed any difference in how you got in with both brands ?
Wockhart only make 25mcg tablets - so would need prescription to read 2 X 25mcg tablets per day (wockhart)
Mercury pharma is well tolerated by many patients
MP make 50mcg and 25mcg and 100mcg tablets
Best to avoid Teva brand (unless lactose intolerant) as it upsets many people
I was only started on 25 mg, I’m assuming that’s because I have a pacemaker? I’m just miffed that I’m still higher than I should be but the gp wasn’t going to discuss it with me., or even ask how I feel.
Hence over 109,000 members on here
Current thyroid treatment is woefully inadequate
There's 2 million UK patients on levo
Vast numbers are left under medicated and terrible quality of life
Guidelines on dose only published last year ...pity thousands of doctors haven't read them
Sorry no, I don’t feel any difference but I would like to go back to Mercury to see if my palpitations stop, havent had many but more than before. However that could be my ticker, I’m overdue a pacemaker check up.
Palpitations are common hypothyroid symptom
Medics frequently think it only happens if hyperthyroid
I’ve managed to see my tsh levels through my gp app, I wish I could show you my graph but I don’t know how to transport it over to the site. Anyway in jan 2017 my tsh was 16.49!! It’s very interesting, my readings were up and down like a fiddlers elbow! And after the chat with the surgery sister this afternoon who claimed that my levels are within the normal range, it’s clearly says highlighted in red- Abnormal, so what’s that all about?
I have just deleted my reply because I see you have had RAI. I would ask Elaine Moore because she had RAI and has a site which is full of useful information.
Here is the link
elaine-moore.com/Home/tabid...
If you want to show us the graph do a screen shot and start another thread.
That may be so but I have gone through periods where I felt dreadful, earlier this year my tsh was 14.9 and I felt awful and my t4 was ok ish, it’s now down to 7.53 but I don’t feel that brilliant, my t4 is 17.9.
I just amended my reply to you.
Just to add that a lot of people who have had RAI need T3 as well as T4 to feel well.
Thank you for that I’ll have a look.
See/contact GP for 25mcg dose increase in levothyroxine
So prescription will be for 50mcg
Ask pharmacist for Mercury pharma brand ....you may need to try different pharmacies to always get same brand at each prescription
Hi slow dragon. I contacted my endo today and managed to speak to him. Told him of my concerns and he told me that if he gives me another 25 mg which will take me to 50mgs I may go into hyper again??? I said that wouldn’t it be better for me to start on 50 now and I would have a month to six weeks on it before my next bloods. He disagreed with me and said let’s just leave it until our next call in September. I asked him about having full bloods and vitamins and he said if my vit D was adequate that’s ok. When I mentioned folate, b12 etc he said that I didn’t need them?? I let my husband listen in on the call, just so that he could understand what it’s like when you’re talking to these consultants, he couldn’t believe how dismissive he was.
Clearly you need dose increase in levothyroxine
Suggest you try GP for 25mcg dose increase
Tried GP she says it’s fine too. So I now have a GP and an Endo that thinks I’m fine 😕
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