After 20 years of Hashimotos I've had enough of GP's and Levothyroxine. I went to a private clinic and no suprise - I am very low on T3. She has prescribed slow release T3 5mcg but (maybe impatient) I feel no better. I've just discovered this site and read about NDT. Sounds like a better plan. Which brand do people take and where and how do you get it?
I found some unregistered 'brands' on a site called Thyroid and Medication. They all seem to come from America but originally from Thialand or vietnam. Does this sound ok or dodgy?
Also, I see people mention vitamins a lot. I sometimes remember the odd Vitamin C and in the winter take Vit D but that's about it. I was once recommended Ashwagandha and it sits in my cupboard being ignored! Do people really get noticable imrovements from Vits and if so, which?
I do not know why I haven't looked into anything until now. I remember reading a lot in the beginning and returning to the GP many times trying to work out why I still felt so unusually tired. I suppose I thought there was no point anymore and got bogged down with it all. Any advice appreciated.
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There’s absolutely no point considering T3 or NDT until found out where you currently are…..whether levothyroxine needs adjustment and/or vitamins improved
Please add any results you have
If you have autoimmune thyroid disease, will need coeliac blood test, before considering trialing strictly gluten free diet, possibly dairy free
Wow! Thank you so much. I am actually ashamed I have had this (turns out I have Ords) for 20 years and know none of this!
My TSH and T4 was perfect. Something like 2.5 and 14.
My T3 was 1 (optimum 1.03-1.9 and should be the higher range I was told). Had to go private. My Doctor didn't know what T3 was but asked the lab anyway (scary) and lab said no we don't do).
Always the same brand of Levo. 75mg.
Never been routinely tested for Vitamins as such.
Once (12 years ago) found out I was extremely Vit D deficient and now take Vit D in the winter. I'm outdoors a lot in the summer. Never re -tested.
Had coeliac tests a few times. Always fine.
Had B12, folate, ferritin and iron tested privately last year. All fine.
A private dutch test (urine and saliva) showed consistent high blood glucose last year.
NHS tests say I haven't. I believed the private test and have lost 1 stone and kept it off and very careful.
Not over weight.
Cut down alcohol to occasions only. Can hardly tolerate or enjoy much more than a glass of wine anyway.
I wonder if I should just go back to the private clinic and get all of the above. She is more of a hormone doctor. Well, MD in dentistry and now runs a beauty clinic and has access to a specialist pharmacy.
I wonder if she will even understand the abbreviations above. She did try to order me 1mg of T3 and the pharmacy had to ask her to re do the prescription to 0.5mcg. Made me nervous.
I know it's easy to get despondent when your hypo and just plod along and try and get on with life. If your TSH was above 2 then it definitely wasn't or isn't perfect. No way, no how, you are still hypo with a number like that. Also if you're only on 75mcgs Levo after all this time you likely just needed more + vitamin optimisation.
Heads up, doctors saying your vitamin levels are 'all fine' just means you haven't entirely run out of something. They may well be dragging on the floor of the reference range and giving you symptoms still until you optimise them and get them nearer the top of the range.
It's worth spending a bit of time reading other posts here. See what advice is also given to others and what easy mistakes people make, as I have. You can learn a lot. You will get good, solid advice here, so do as you are asked and you will benefit. Wishing you luck and health.
I am embarrassed to say I have no idea what the ranges are or should be. I've always been treated like it's none of my business. I don't even know from that result which is T4 and which is TSH as it has been years since I questioned any of it. Worn down.
I do remember the private clinic referring to my TSH and T4 as perfect and was happy to hear it! To put you in the picture, my GP surgery won't even tell me my results unless I argue with the receptionist then a grumpy doctor will phone me back eventually and reluctantly tell me. It's like i'm asking for the Queens bank account details.
As a result, I rarely ask now. I did question something last year in the surgery and the doctor swiveled the screen round. I spotted that last January one level (the one usually at 2.5) was 6.5. I asked why nobody phoned to let me know it was so high and she looked at me blankly. Where do you go with that? I was annoyed but a more recent one showed 2.5 again. I'm sorry i'm so clueless.
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 receptionist 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.
It really is time to start learning about the condition you have been landed with and to get a grip with your doctors and not let them belittle you. Never ask a doctor for the results. Always ring and ask the receptionist to email you a copy of your test results with reference ranges. And if they protest (they should not) insist. It's your right.
Someone else suggested reading lots of posts on here. That's a good way because the answers start to stick after a while and you realise what you are aiming for. Never believe a "your results are excellent" statement. You need a copy so that you can work it out for yourself. There are so many books around, but I always recommend Dr Barry Durrant Peatfield's book to people who are starting out. It's a good primer. Available on Amazon and on Kindle for next to nothing. "Your Thyroid and How to Keep it Healthy"
Read everything. It will feel overwhelming at first but you will get there and make sure you remember to always have your thyroid bloods tested before 9am and despite what a doctor might say, nothing to eat or drink other than water since the evening before. Always take your meds after the blood test, so that's 24hrs after the last dose of Levo. Not sure how you would handle slow release T3 for testing. Keep a file with all your test results in. Write on each one how much Levo and T3 you were on at the time of the test and how you felt. These historical tests are really helpful in the future sometimes.
You can do it. You have loads of scope to get better and might well not need that T3. You might have to use a private blood test source to get all the right tests though. People here will recommend them for you. I only use a basic one as my GP does full panels for me regularly.
My T3 was 1 (optimum 1.03-1.9 and should be the higher range I was told).
That reference interval (range) is unlikely to be Free T3 - far more likely Total T3.
(Typically Free T3 numbers are numerically around 3 times the value of Total T3. But in the next unit down! That is, in pmol/L instead of nmol/L. So, Total T3 is likely to be around 1 to 2.4 nmol/L, and Free T3 around 3.3 to 6.4 pmol/L or something like that.)
Thank you - regards to earlier question I weigh 57 kilos. I have tried taking another 25mg of levothyroxine and I can't tolerate it. My heart races and I feel on edge and anxious. I was put on natural bio identical progesterone cream and the same thing happened. Well, fine for 9 months then my body stopped utilising it properly and storing it. A resting heart rate of 100 and breathlessness. Apparently a very strange reaction. My body does not play ball! I wonder if Im not tolerating Levo either. Yes I spend a lot of time guessing.
Levo might work for you if it’s at the right level and if your nutrients are optimal to help convert what FT3 is needed.
If FT4 low too & insufficient level FT3 will be inadequate too.
We can help interpret if you add your results. What did private Doctor & GP test?
For full thyroid you need testing.
TSH, FT4, FT3
TPO & TG antibodies
Folate
Ferritin
B12
Vitamin D.
Many arrange private tests to have a complete picture as full testing not completed by GPs.
Low thyroid often leads to poor nutrients this lowers TSH and mimics many of the hypothyroid symptoms.
T3 should always be started low & slow and I’m afraid which every approach (LT4 - levothyroxine, NDT - natural dedicated thyroid, LT3 - liothronine only or combo) there is no quick fix and you have to be patient. Lots of changes quickly often worsens matters as symptoms & results become muddled & your system is not ready to adjust to levels.
Small adjustment with testing 6-8 after unchanged new dose.
With supplements it is best to test first then be guided by result at what level should be supplemented. Always leave a gap between starting new supplements in case you have a reaction to an ingredients in the pill.
The range for T3 was 1.3-1.9 but should be on the higher end of the scale. I was 1. With levo, if I take anymore than 75mg i instantly have a racing heart and feel unwell so I do feel Levo is at the right level for me. I was once at 1 and felt awful.Obviously T3 is low and I will take your advice on the vitamin testing. Not sure how easy this will be regularly with the NHS.
I get so nervous when I have to approach GP's. Years of getting nowhere so I rarely go. No confidence in them.
It took 8 years for them to diagnose thyroid disease!
I was sent packing many times and told my iron levels were fine and there was absolutely nothing wrong with me.
It started when I was 25 and I was a tiny 7.5 stone. Suddenly sleeping all the time and 9.5 stone within 2 months I knew something was very wrong with me.
I was still not exactly over weight. They didn't get that I might still look ok but I was suddenly 2 stone heavier for me. I think they thought I was after magic diet pills.
They didn't see the brain fog or exhaustion, aches and pains or anxiety I had previously not had and certainly never believed me.
I recently went when my exhaustion was getting unbearable and he didn't understand one thing about thyroids other than my T4 and TSH were fine.
He didn't know what I meant about T3.
I can't imagine them doing all of these tests so I won't even try.
I'll have to go back to the private hormone clinic where even she doesn't seem too knowledgeable on thyroid disease
Having a racing heart from increased dose of Levo does not mean it's at the right level. It means you aren't tolerating the dose increase. Probably due to poor vitamin and mineral status or cortisol issues due to being hypo for too long.
Things you can do to try an increase is cut the 25mcg tablet in half and just increase by half a tablet a day for 6 weeks. And/or split the dose of Levo and take half in the morning and half at bedtime. If you still react, you can try half a tablet once a week for a few weeks. Then a second half a tablet a couple of times a week etc. Build up slowly. Meanwhile you can be working on your vitamins and probably your iron.
We have to know a lot and work really hard to get well from this illness. We help each other. Medics are woeful when it comes to thyroid.
Sorry, my brain fog is the worst it's ever been. I'm struggling to process the answers here. You did say it would need to be private. SlowDragon has given me umpteen sites for testing. I'm slightly overwhelmed (but delighted to get so much info) and will sit and go through every option. Thank you
I will catch up eventually! 57 kilos. Brand - I'm given 50mg by Almus and the 25mg by Mercurypharma. Weird, never questioned why two different brands. They once changed brands in that pharmacist and I told them I felt a difference. Felt more hypo but they didn't believe that was possible. Luckily the brand switched back again before I had to fight it.
Almus is Accord brand boxed by Boots. Also boxed as Northstar via Lloyds
Accord don’t make 25mcg tablets
So if only want Accord - cutting 50mcg in half to get 25mcg
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma or Accord are often the most easily tolerated
Ideally you would stick with one if you notice any difference between the two you are likely to need dose increase in levothyroxine to perhaps 75mcg and 100mcg alternate days initially….if you couldn’t tolerate 100mcg daily previously
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
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)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before 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
Apologies for jumping in SlowDragon and dayoff, brain fog is getting in the way of understanding when I should take my Levo. I normally take it in the morning, but my blood test on Tuesday is 8.40am. I know I mustn't take it that morning, but If I leave it until I come home, my last dose will have been on Sunday morning. Is that OK?
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before 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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
You see, I even got it wrong with my first response to you. Last dose will be Monday morning. Once I've had the blood test, come home, and then take Tuesday's dose. Thku.
I take my dose with me in a little pill box and a bottle of water and just take it as soon as I get back in the car after by blood test. Then I get on with my day.
Interesting and I will try adding 25mg every other day. Great idea. I weigh 9 stone so that should work out about right looking at the calculation. I take it on waking first thing and always wait at least an hour before eating. Do you think I should just stop the T3 i've recently been prescribed and just try these variations of Levo first?
Difficult one as she is testing me again after 6 weeks. I'm 3 weeks in. Arghh
I certainly don't feel well. It's slow release. The only difference I feel so far is a little more awake for a few hours around mid morning/lunch time (not sure if imagining as it's probably my magic 2 hours of energy a day as usual) then a massive crash after lunch. Honestly, i've never felt more tired so it's not the miracle cure I was looking for! Starting to realise this thyroid business is like a giant rubik cube to solve.
If vitamins aren’t at good levels levothyroxine, T3 or NDT won’t work well
Well, MD in dentistry and now runs a beauty clinic and has access to a specialist pharmacy.
I wonder if she will even understand the abbreviations above. She did try to order me 1mg of T3 and the pharmacy had to ask her to re do the prescription to 0.5mcg.
Sounds like she saw you coming….
Slow release T3 seems a bit hit and miss generally
Probably expensive?
Email beauty clinic and get your thyroid test results
Presumably you paid for testing…..also expensive?
We ALWAYS recommend getting FULL thyroid and vitamin testing done BEFORE booking any consultation
Test early Monday or Tuesday morning, last dose levothyroxine 24 hours before test
List of private testing options and money off codes
It is £60 for 2 months T3. £145 for bloods. Very basic TSH, T4, Total T3 results - 2.5, 14. 1 in that order.I have now arranged the bloods with Medicare this time (got the discount thanks) and await the appointment time they offer at my nearest clinic. Hopefully I can tweak to a Mon/Tues morning. I note your point about staying on T3. Thanks
£145 for bloods. Very basic TSH, T4, Total T3 results - 2.5, 14. 1
Ouch….expensive testing and useless without antibodies and vitamins
Was test done early morning, last dose levothyroxine 24 hours before test
It is £60 for 2 months T3
So also expensive as it’s just 5mcg
Most members, if can’t get T3 on NHS, currently get prescribed Thybon Henning 20mcg tablets T3 privately. Prescription full filled via specialist U.K. pharmacies
Thybon Henning 20mcg tablets are 50-60p per tablet
Cutting tablet into 1/4’s to get 5mcg doses
Typical daily dose of T3 is between 10mcg and 20mcg per day…..usually divided up as 5mcg doses spread through the day
Usually……Starting on just 5mcg …..after week or two adding 2nd 5mcg dose approx 10 hours later. Hold at this dose for 6-8 weeks and retest
Day before test (with normal T3 …not slow release)….last 5mcg dose T3 is approx 8-12 hours before test
You said you reacted to 25mcg dose increase right away. So don't take 25mcg extra every other day, cut the tablets in half and increase 12.5mcg per day or every other day to start with and build up slowly as I detailed above.
Ok, I have just bitten the bullet and arranged a private blood test for a full thyroid picture at my nearest clinic. I will bore you all with the results. I will carry on as I am with the 75mg Levo and the 5mcg T3 (unless you recommened I stop t3 for now) and see what is thrown up. Then I'll know where to start. Hopefully 🤪
“The range for T3 was 1.3-1.9 but should be on the higher end of the scale”.
Not necessarily. Some people feel they need high level FT3 to be well, others might be best with 30% or 50%. What you do know is 1 (1.3- 1.9) is under range and too low.
It possible that low nutrients are make tolerating the right amount of levo difficult. This is often reported. Some end up being prescribed propranolol to cope with palpitations but that’s not ideal either as it ultimately lowers FT4:FT3 conversion.
You could try splitting levo doses into smaller doses and instead of increasing by 25mcg in one go taking half.
GP might test some items but you’ll likely make better progress if you arrange full test I one go.
You shouldn’t have to & you shouldn’t have been left struggling so many years to be diagnosed.
I’m hyperthyroid and that would have been treated 5 years before I was diagnosed but it was missed & not followed up (missed more than once)
You may find the direct private test is less expense than the private hormone doctor, who has identified your FT3 too low but not considered the factors surrounding why.
Take your time & ask any questions you need help with.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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