Latest Endo Consultant appointment has just concluded, short summary is that I will be moved into NHS from private to undergo T3 trial.
As the Endo could not put timescales against how long this would take, I asked whether it would make sense for me to pay for a self funded script to cover the duration, next review in 2 months then to transfer me into NHS if the T3 becomes an ongoing concern. . Finally, traction at last!
The dose is 50mg daily required for 2 months..
Phoned through to 2 pharmacies, the Endo suggested supermarkets are quite competitive.. Tesco in Fareham tell me they can not get hold of it. If anyone can provide a steer, location and cost if known would be really helpful..
TIA.
Steve
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Hoopy83
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Did your endo tell you to start on 50mcg T3? If so that is too high.
Is it being added to Levo or T3 only?
If added to Levo is the Levo being reduced?
What are your current levels for TSH, FT4 and FT3 upon which this decision has been made and did you do the test as we advise, ie no later than 9am before any food or drink other than water, last dose of Levo 24 hours before test?
Starting dose of T3 is 5mcg and stay on this dose for 2 weeks to see how you are. If all OK then add in a second dose of 5mcg, stay on that daily 10mcg for 2 weeks, see how you are. If all OK you could increase to 15mcg daily then retest 6-8 weeks later. This might be enough if it's added to Levo, or you might need all. You really can't dive in at a high dose, T3 is a potent hormone and we have to start low and slowly increase, if we go too quickly we may miss our sweet spot.
List of pharmacies from ThyroidUK which you can ring round to get prices for T3 on private prescription
If your prescription states Thybon Henning then 2 or 3 of those pharmacies supply at a cost equivalent to 50-60p per tablet, Roseway Labs, Smartway and Chemist4U I think. Unlikely to get Thybon Henning when changing to NHS prescription though.
You're quite correct. The verbal instruction was that the T3 dose will be 50mg and T4 reducing from 125 to 50mg, 50/50 .. The private script however, is for 20mg daily. Endo said that dropping T4 straight down was fine as the T3 would make up for the reduction. Does this sound right?
Ref blood tests, for some reason I can not find results to my last two blood tests through the NHS app, if need be, I'll get down to the GP surgery..
Blood test conditions.. 9am before any food or drink other than water, last dose of Levo 24 hours before test..? To the letter.
Pharmacy - The pharmacy that I have all my prescription (nhs) sent could obtain but couldn't give me an exact price till after it was ordered.. to save the bother I just paid the 78£. 79p a day.. Next day delivery. Just shy of 40 quid a month, wonder where my Endo got 'thousands' from!?
Thanks for the list, will keep that in my back pocket.
That's a massive reduction in your Levo. Without knowing your current results/ranges it's not possible to say if you need to reduce at all but it should never be that much.
Finding the optimal dose of each hormone takes time and very gradual tweaks, your endo seems to be taking a gung ho approach which I think will backfire, best advice is to tweak gradually by making small adjustments, wait 6-8 weeks then retest each time and reassess.
Come back when you've managed to get the results/ranges.
Initiating T3 on 50 mcg daily is way too much. I would suggest starting on 10 mcg, possibly splitting the tablets into two 5 mcg (quarter 20 mcg tablet). You might also want to reduce your levothyroxine by e.g. 25 mcg and start by skipping a couple of days levothyroxine as it has a long half life.
All this depends on what you are taking at the moment and any results you have for TSH, fT3, fT4.
1) are you now taking daily vitamin B complex and/or vitamin B12
2) have you now reduced or stopped propranolol
3) are you now on strictly gluten free diet and/or dairy free diet
4) do you always get same brand levothyroxine at each prescription
Obviously you need to know most recent TSH, Ft4 and Ft3 results
Testing early morning and last dose levothyroxine 24 hours before test
Retesting vitamin D, folate, ferritin and B12 levels
Starting T3 must be done VERY SLOWLY - usually as 5mcg initially or as 2.5mcg twice a day
Depending where Ft4 result was on last test depending on wether still taking propranolol (will result in higher Ft4 and lower Ft3) and what dose and brand levothyroxine you are on
Hello SlowDragon, really good to hear from you, hope youre doing well.
1) are you now taking daily vitamin B complex and/or vitamin B12. No, still taking Vit D3 k2 and Thorne magnesium.. according to blood results, Endo didn't believe that any benefit would be gained through taking Vit B..
2) have you now reduced or stopped propranolol. No, still on the .... stuff. The Endo apparently looked at the studies and found no conclusive evidence for why it couldn't be taken..
3) are you now on strictly gluten free diet and/or dairy free diet. I don't recall the name of the test but it came back clear, from memory it was a fasting blood test (coeliac?). I raised with Endo again today about Huel - introducing a Gluten free meal replacement daily (lunch), I dont always have lunch but when I do its an occasional sandwich, breakfast is rarer still.. feedback on Huel was along the lines of placebo.. no real benefit but if I think it will make a difference, it probably will so go for it..
4) do you always get same brand levothyroxine at each prescription. Not always, but I I collect 3 months at a time, if my issues were brand related surely I'd notice ups and downs .. the feeling is pretty constant with changes noted between dosages.
My experience with the Endo has been interesting to say the least, anecdotal recollection of early my diagnosis and introduction to Levo led to the initial consultation concluding stage reductions from 125mg to 75mg, so todays appointment was to assess how i now feel having returned dosage to 125mg and review latest blood test. Endo reflected I was high T4 and T3 but low TSH.. I will obtain and provide the blood result detail tomorrow.
This forum has been a godsend, truly, but every time I've mentioned this forum / advise received to medical professionals, whether GP's or Endo an professor to boot, I've been quite surprised with reactions that seem to dismiss out of hand.. advise here comes from personal experience, patient to patient and costs nothing... zero bias.. The Endo has cost me a small fortune to go around the medication dosage bouy, despite historical blood tests at various dosages for very little progression and zero practical guidance in stage increases of T3.. !!
The endo is an extremely friendly and warm person but the overall clincal experience hasn't filled me with warm fuzzy feelings.
Will drop another message in tomorrow with blood test results.. providing they're obtained. Thanks again.
Suggest you consider changing endocrinologist then
The lived experience of thousands of thyroid patients is
1) that B12 under 500 is too low and folate needs to be near top of range
Medics only address vitamin deficiencies. On levothyroxine we need OPTIMAL vitamin levels
Both B12 and folate are water soluble and majority of members find it beneficial/necessary to supplement vitamin B complex daily and a separate B12 initially until B12 improved to over 500
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
todays appointment was to assess how i now feel having returned dosage to 125mg and review latest blood test. Endo reflected I was high T4 and T3 but low TSH.. I will obtain and provide the blood result detail tomorrow.
Suggest you ensure you always get same brand levothyroxine at each prescription
Improving low B vitamins will improve conversion rate of Ft4 to Ft3 improving low Ft3 and reducing high Ft4
Essential to very SLOWLY reduce, then stop propranolol. That’s likely to take several months. Reducing by 5mg ……wait 2 weeks……reduce by further 5mg …..wait 2 weeks etc etc Last 5mcg …..cut one day a week, next week cut two days a week etc
Hiya SlowD, thank you very much, as always for taking the time.
Have grown massively frustrated with the Propranolol thread. Both GP and Endo have fobbed me off claiming its safe and not detrimental. Paying for this privilege, one would love to think the info provided by the specialists should be beyond reproach!
I was placed on Propranolol due to anxiety and reoccurrence of migraines after a period of 10 years clear.. think you previously said that anxiety was likely due to being under medicaticated. How would I practically go about coming off the Propranolol and should I require something for anxiety, do you have any recommendations? Dosage is 40mg, I can't find anything printed that confirms slow release or not..
Thanks for the steer on B vits again, will get these ordered.. do you know, are the size of the Thorne B comparable to the Thorne magnesium citrate?
I will probably start the T3 tomorrow, so I'm assuming I should break up the 20mg tablets into half or quarters whilst reducing Levo, spacing a week or two apart?
Presuming I found the sweet spot whilst still on Propranolol, coming off that will have a knock on with everything else? Leading to adjustments across T3 (if ongoing concern) and T4...
Presuming I found the sweet spot whilst still on Propranolol, coming off that will have a knock on with everything else? Leading to adjustments across T3 (if ongoing concern) and T4.
If you got off propranolol, improve vitamin levels and trial gluten free….and possible dairy free…you might not need any T3
This is really frustrating. Why on earth didnt my endo provide this guidance !? I asked about side effects etc, reply was.. not really. To really wind this up, the results have not been uploaded to mhs patient portal, endos office have said he's away on leave as of cop today so don't hold your breath on receiving results.. on the ofchance will my GP practice have sight of these results!? NHS blood tests done at the local hospital.. nope, apparently not.
Deep breaths!
I'll wait for his notes to see if that provides the detail I require.
Ref B vets.. all ordered and will look into the Gluten piece
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