Hi I've never posted before and might have asked my question in the wrong place earlier and apologise. 😬
I've had Hashimoto for 24 years and am therefore at late stages I assume. I've managed to get my consultant to agree to give me T3 about 15 years ago as I was so unwell on just T4. I currently take T4 75 and T3 15 split in 2 doses.
My latest results are T 4 16.7 and fT3 3.5
I'm putting on weight 0.5 lb per week and am feeling tired and demotivated.
I'm gluten free and take all the important thyroid vitamins and eat a very healthy diet. I have also been diagnosed with pernicious anaemia last year so have B12 injections x8 weeks
my question is what dose do I push for when I see my Endo? I'm expecting resistance as I'm just about within range! Shall I ask for 100 and maybe 25 T3 split in two? I'm determined to get an increase as I feel so rough.
Thank you for your help in advance.
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Louie25
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Do you think I should push to raise my T4 too maybe to 100 as I'm obviously a poor converter. Would a low T4 also make me put in weight and feel tired or is it really all about the T3?
Conversion isn't as important when you take T3 but keeping a mid range level fT4 is often where people feel better, if you previously felt well on 100mcg T4 then it makes sense to go back to this, do you have any results from being on this dose? Why did it get lowered?
Edit... so 100mcg put you above range hence the drop so maybe 75/100mcg?
It would be good to raise your fT3 level but you only want to change one thing at a time or it gets really hard to know what helps or hinders and your fT3 is very low and this being the active hormone is going to have a big effect, you generally know within a couple of days if this is the right route as T3 is much quicker to react than T4, after 6-8 weeks retest
Do you have any recent results for folate, Vit D, ferritin or ideally a full iron panel? I see you inject B12 but do you support the rest of your B's with a good complex?
No I don't actually not b complex I do take zinc selenium omega3 and Vit D and folate
I had a full blood panel and the only problem was I had too many red blood cells and I'm seeing my go about this. Not sure what that means but apparently they worry about blood clots. Not sure this is linked to Hashimoto is it?
Hypo's often have low RBC as we often have high MCV, high RBC could suggest many things such as dehydration, high iron etc... do you have a ferritin result?
Also how about sex hormones are you peri/ post meno?
I take HRT and am in the process of seeing a menopause specialist soon to see if this is an issue too. Why do you ask are sex hormones connected to red blood cells?
Sorry, no just shooting from the hip... sex hormones effect SHBG which effect TBH (thyroid binding hormone) which as the name suggests bind to thyroid hormones so may mean you need to tweak doses of each to find your balance
Before you change anything, I think you should get new blood tests according to the recommendations from this group - 24 hours gor t4 and 12 hours for t3. Also splitting the t3 into 3 smaller doses each day maybe better than 2 bigger doses.
Thank you I will retest as I'm sure my endo will insist on it if I make a change I don't think she'd agree to another test so soon as I doubt she will go along with the timing suggestion. It can only mean my T4 was artificially high and as it was only 16 I think I'm safe to increase it!
So for many a happy place is with fT3 & 4 around 50-70% but obviously it's very individual and needs fine tuning with dosing times and whether to split doses or not, when adjusting doses small slow changes are the best route so with T3 add no more than 5mcg and giving time to settle
Have you some previous results when you have felt well?
Also you say you split doses have you tried taking just one dose either early am or before bed? Do you currently take on an empty stomach 1 hour away from food or caffeine?
First step in to increase Levo to 100mcg wait 6 weeks and test again.
Why?
You will likely then need to increase levo to 125mcg
Again wait 6 weeks and test again
Note how you feel on 125mcg levo plus the 15mcg T3
I'd be inclined to the combine your T3 into a single dose....in 2 steps
When do you currently take your T4 and T3?
What is your T4 to T3 conversion status like. ....compare FT4 with FT3...high FT4 with low FT3 indicates poor conversion.
What was your FT4 level before you added T3? It may just never have been enough have been high enough
Weight gain is a text book symptom of undermedication
I suspect your endo is dosing by TSH which is not a reliable marker
75mcg is not a large T4 dose .....have you ever taken a bigger dose?
Do you always follow advised protocol when testing......test at 9am, on an empty stomach, 24 hrs after last T4 dose and 12 hrs after last T3
Following this protocol you should have reliable and consistent results to compare
T3 will be lowering both TSH and FT4
I'm trying to unpick how your results have reflected both your doses and your symptoms over time
It will be easier to get more Levo than T3!
Only ever change one thing at a time otherwise you won't know what is changing what!
Increasing to 100mcg T4 and 25mcg T3 would be too much....a bit like putting high octane racing fuel in an old Mini . Like the old Mini your body would suffer from too much power!
As I suggested I'd try 100mcg levo first because without earlier labs we don't know how well you are converting. It's a slow process I'm afraid....one slow step at a time
I used to take 150 initially 20 years ago then as I still felt awful I did a lot of research and badgered my Endo to agreeing to give me T3 and he reluctantly did so for 15 years!! Complaining every visit!! But it made a huge difference to how I felt. Then we took T4 down to 100 and it stayed there until 2023 when my T4 levels went up randomly to 23 and he asked me to reduce it to 75 and that's where I am now with 15 T3 split int 2 doses.
The weight increase is bonkers as I eat really well and I've put on 5 lbs in 8 weeks! Something is amiss.
I know you guys seem to know so much more often than the doctors about how Hashimoto works so I want to be pre-armed before I speak to this new doctor with what I think is a good option.
I suspect it's the T3 I need to up. Do you recommend taking it in one dose and if so at what time? I was under the impression it had a short shelf life and that's why you split it to get max benefit.
Being with Hashi's you will expect your hormone levels to fluctuate so the time of testing is important to avoid a "flare"
You know your body best having lived with Hashi's for a long time....we only have a brief snapshot here!
If you think you need more T3 then go for that!
I need high dose T3-only and take my full dose at bedtime. That works well for me but not necessarily for everyone!
I'm not a fan of splitting but then again it depends on how the individual reacts.
T3 in the serum drops by half in a day but once in the cells it remains for about 2 to 3 days and is then released in waves ( according to the late T3 expert Dr John Lowe)
The T3 in the serum is inactive and only becomes active once it enters the cells and attaches to various T3 receptors so it's not true that we need multiple dosing throughout the day....we have a few days supply in the cells which of course need to be replaced daily by an adequate and constant supply.
The weight gain is likely because your metabolism has slowed down with fewer calories burned. T3 helps to control the metabolism so if it is too low, metabolism is slow, fewer calories are burned and weight is gained
Your instinct is right....you need more T3!
When I started to self medicate a number of years ago my GP thought I would kill myself by taking a single high dose daily. I'm still here albeit not 100% but vastly better than I was. They leave me to it to treat my hypothyroidism!
Take it when it suits you best......I chose bedtime because it keeps the T3 away from all foods and drinks. I didn't want to spend my day clock watching for the next dose!!
So, no!....you don't need to split the dose to achieve maximum benefit.. in fact a once daily dose can offer a better chance for more of the T3 dose to reach the nuclei of the cells....as in my case.
Thank you so much for taking the time to reply. You're right we have to become our own experts don't we?! I just hope this new Endo consultant will listen to me as officially my levels are in the 'range'
It's interesting what you say about taking the T3 in one dose and I assume it doesn't disturb your sleep. I might try taking it once a day and away from food. I've been taking it so long I guess the understanding about how it works may have improved over the years so I'm grateful for the update.
I will see what she suggests before I steam in with what I want as I want to keep her on side!!
She won't know when I'm taking it so that's fine!!
As you say trial and error so long as I can halt this weight rise it's really freaking me out!! 😬
One last question do you take your T4 at night too I've read some people do this snd it works well. Does it matter if you take them together?
So do I but sadly in my experience the medical profession is against T3 supplementation as it suppresses the TSH which really upsets them!!
I have always managed to get round this for 15 years and as I've been on it so long I don't think they feel they can take me off it!! Fingers crossed this new Endo consultant who's is younger than my previous man might be a bit more up to date with research. One of the man problems I hate to say is the cost of T3 which is outrageous I believe which doesn't help with the NHS being in the state it's in!!
Yes the cost of T3 on the NHS is shocking.....it is not an expensive hormone to manufacture but Big Pharma have pushed the price up causing this madness. The price has reduced but it's still expensive.
It's a combination of cost and medical ignorance that is putting it out of reach for many.
The NHS would never pay for my dose....I would end up paying in ill health and in extremis, with my life!! So I self medicate, like many others.
We'll never know how many patients have died (behind closed doors) the result of illness caused by inadequate T3! I suspect my mother was one of them.
Oh no I'm so sorry to hear that about your mother. My mother had a similar fate with being taken off HRT aged 80 because of faulty research around breast cancer and went into a complete physical and emotional decline and ended up taking her own life. I guess it's why we are so determined to take responsibility for our own health isn't it?!
Thank you for your help I will try out your suggestions re the timings of my meds and push for more T3.
Free T3 (fT3) 3.9 pmol/L (3.1 - 6.8) 21.6%
You say on this test last dose Levo was only 4 hours before?
So if that’s the case….Ft4 false high
I think I would INITIALLY increase Levo back to 100mcg
Retest in 8 weeks
You may need further increase in Levo or T3 after that
Meanwhile get folate, ferritin and Vitamin D levels tested
Have you tried dairy free diet?
when you retest
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
I take TEVA I think it was changed at some point I can't remember when but not recently.
T3 is Viatris and that has definitely changed recently as it now comes in a pot as opposed to a strip. Not sure if that's made a difference to me.
I take on board what you say about testing and will definitely do that next test.
How do you feel about splitting the T3 dose as others have suggested it's not necessary and makes no difference? I was initially told it was a short lived med and therefore needs to be spread as a time release was not available.
I was also thinking about taking the T4 at night rather than in the morning so it's a long way away from food and coffee any thoughts on that ?
Thanks have you heard of the T3 make Viatris? This is the one thing that has changed recently that might account for my change in symptoms and drop in T3. Before that it was morning side the same as my T3 10 mg it's only the 5 mg that have changed.
I don't know it might just be a change in me we're not robots are we?!
I think I'll change and take my T4 at night that makes sense to me and keep splitting my dose x2 at 12.00 and 4.00 pm snd try and keep them away from caffeine and food. Then I'll see what the Endo will allow me to raise my levels to. 🤞
Viatris is the company/branding and the product is made by Sigmapharm.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK-licensed products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), British National Formulary, NHS Drug Tariff, etc. PLUS how to write prescriptions in Appendix F.
Also includes links for anti-thyroid medicines (but not product details).
Viatris contains mannitol so yes it could be causing upset
As could Teva Levo as that also contains mannitol
Taking two different medications containing mannitol
I would want to exclude this as possible issue
Get Vencamil Levo instead of Teva
Liothyronine
5mcg dose T3 Tablets…only two options
Viatris or Morningside
Morningside- currently almost impossible to get hold of unless it’s specified named brand on your prescription
This is because cost to pharmacy for Morningside exceeds price Government will reimburse them …..unless prescription has named the brand ….then they have to
Other option is Roma Capsules available in 5mcg, 10mcg and 20mcg doses
That's interesting as my 10 mg ones are morningside and I've never specified. I believe now that I need to be on 20 mg of T3 so hopefully I will just have the morning side ones!!
What does mannitol do? I'm not feeling ill by the meds just putting in weight and feeling knackered and generally demotivated and flat.
How do you change the makes on your prescription through the go or direct with the pharmacy. I use Pharmacy 2 U so I'm not sure how easy that would be.
Thanks I'll see what I can do. First thing is to get my Endo to agree to raise my T3!! I agree my T4 probably needs to be raised too and ideally I would like her to agree to raise that too and leave it to me to slowly raise both then retest in time. I just want the medication to be able to sort it out myself!! It's so hard to get appointments I can't imagine they will agree to see me every 2 months!!
I too suggest you raise Levothroxine to 100mcg with your 15mcg T3 split into 2 doses. Don't change your dose timings at present or it risks muddying the waters regarding your raised Levo dose.
Hold this dose for 8 weeks as once FT4 levels have risen there's a chance FT3 might rise too so you will be able to better gauge your true FT3 levels.
T3 is potent and many have to continue splitting their dose to reduce rapidity, and prolong the duration of its action. I really wouldn't recommend changing your split dosing regime until you have managed to accumulate adequate T4 levels and can assess the whole protocol.
Small changes are always better when regarding thyroid hormones.
Thanks. I get what you say but people have varying opinions. I'll see what the Endo Cons says but the main thing is to get her to agree to increase my prescription!!
It’s easy to get flustered during an appointment when you are hypo.
I would bullet point any questions and importantly point out how well you felt previously on your 100mcg Levo + 15mcg T3 dose, and how low your FT4 levels have become inline with you feeling symptomatic.
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Blood test results. Endo wants to reduce t4
I would like advise..regarding t3 / t4
T4 and T3
Should I split my T4 dose? 
Very confused.. need help
