I am not improving on Levothyroxine only and would like to try T3, or NDT, unfortunately it seems to be Impossible to get hold of on both the NHS and privately (I have also paid for a private Endo who ha simply increased my Levo dose) Does anyone know how / where I can get T3 or NDT without a prescription? It seems I am going to have to take matters into my own hands. Would really appreciate any help you can give me. Private messages only due to forum rules. Thank you
Still struggling with Hashimoto’s - can anyone ... - Thyroid UK
Still struggling with Hashimoto’s - can anyone help with sourcing T3 or NDT?
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Reading through your post/replies of two months ago - there is no mention of results for B12 - Folate - Ferritin and VitD ? Have they been tested ? Having optimal results can help you to feel better.
I'm with Marz with this one. The four things she has mentioned make your thyroid work much better. It's not unusual for them to be low, they need to be optimal and if you look of SeasideSusie's posts then you can see what readings optimal is and how to get there. I also had a conversion issue a few years ago now and I was able to reverse it. Up to then I'd had no problems for years. It isn't a quick fix, took me 5 months to reverse it but the time is dependent on how low they are. Our body can leech vitamins and minerals because we are hypothyroid and usually if we have to supplement its for life though you may eventually find a maintenance dose that works, I now take methyl folate on alternated days. But use good quality brands as some can have so much padding in them they don't do a good job but use the search facility and I'm sure you will get good recommendations.
So as I said these help your thyroid but they do other things as well, the help conversion issues, and they can ease many other issues you may be experiencing but help general health as well.
You mentioned adding in T3 or trying NDT and as Marz has said many won't want you on T3 when you are pregnant especially if you haven't been on it for a long time which you won't have been. Plus some who are struggling find that they are unable to raise NDT etc without going though the vitamins etc first so it makes sense to give that a try first. The earlier you start the earlier you will feel the benefit.
Hopefully then pregnancy with follow. I had my family before I had a thyroid problem but as soon as pregnancy is. Informed you need to see a gynaecologist or a nurse at the hospital who can guide you through this, especially the early months. Your doctor may not be aware of this but for pregnancy your TSH needs to be no higher than 2.5 and needs regular monitoring. Normally we aren't referred that early but tell your doctor you should be referred earlier because you are hypothyroid.
So start working in those vitamins etc. If you don't eventually get them to the right place you may need a little T3 adding in but it's then a small amount and the hospital may happier with that plus understanding the reason more readily.
Hope all goes well but you need to be patience as you work on it.
Also I'm assuming you have been told to go gluten free (get tested for coeliac disease first just in case as you need to be eating alot of gluten for test to work) as being gf reduces hashi flares.
If you did go down route of self sourcing t3 its vital to ensure you have the right (not just towards bottom of range) levels of vit b12, vit d3 folate and ferritin. No reputable consultant would trial you on t3 without sorting these first.
Do you have your T4, TSH and T3 results. If your T4 is at the top of the range. Your TSH still higher than it should be and T3 very low then this can be a good indication if you need T3 or not. I agree also that your vitamins need to be optimal. B12, ferritin, folate and vit D. They all need to be a good number.
I have recently been prescribed T3 privately and waiting for the medication to arrive. Due to my T4 being at the ceiling, T3 very low and TSH still too high. My cortisol keeps dropping as well though. I’m not sure why this is happening and if my symptoms are down to low T3 or low cortisol or both.
Vitamins are very important.
P.
Hi would you still need t3 if tsh very low and ft 4 high and ft3 low ?
In May last year I collapsed when my TSH was very low. My T4 high and above the range and my T3 was barley over the bottom of the range. This came about as in March last year my TSH was slightly high and my T4 was just below the top of the range my T3 wasn’t checked at that point and my GP increased my Levothyroxine dose. If my T3 had of been checked In March i bet my T3 was too low then and that’s why my TSH was high.
My GP never checked T3 in all my 11 years on Levothyroxine. I could have been converting poorly for all this time as I did have issues throughout that period.
I wouldn’t like to say yes to your answer but my answer to same issue is yes. It sounds that your are over medicated with T4 and need to reduce T4 and add in some T3. I’m not a medic but you only need to check the figures and logically work it out.
My T3 is in the post today from Germany. I’m really interested to see if it helps my symptoms.
Today I can hardly walk. My knees keep buckling. I have no pain, it’s weakness. What are your symptoms please.
Thanks
P.
Hi, I feel weak, tired , lost my zest for life, each day seems a struggle, my legs and feet really ache before I had thyroid removed I could do 10000 steps a day, I really struggle to do 5000. I just ache so much. ..and gained weight !!
I’m really sorry to read that your symptoms are causing such a change in your life. I use to do the 10,000 step challenge every day some days I’d do 12,000. Now I can’t even walk to my garden and because of all this I had to leave my brilliant job. I live alone and really struggle with the housework. Luckily I had s friend to help with my shopping but she can’t do it forever. I hear your plight too.
I know I will get better. I’m determined and mostly think positive about a recovery. I’m not even sure if my problem is the missing T3 until I try it. My next hospital appointment is to rule out MS. Can you not see s private Endocrinologist to work out if you need T3 or not. That’s what I did. It took 3 months and the cost wasn’t too bad.
Try and eat things that help with T3 conversion. Also double check that your vitamins are optimal. Mine weren’t but are now. This does help your thyroid medication work better. My sister had her thyroid removed due to cancer. She also struggles. She has to keep her T4 very high in order to keep TSH at zero. So no cancer returns.
Hi, at the beginning my vit d was low but now good because my parathyroid damaged after op I take magnesium and adcal. My ferritin always low but I take iron tablet my iron level is good, b12 is very good. There is a private endo my gran daughter goes to he his very good, I could save for 1 consultation just to sit and chat to an ecpert for an hour would be amazing, yes my 16 year grandaughyer has hyperthyroidism. When I go to see my endo surgeon I am rushed even, his assistalnt, a nurse hovers around in case you take too long, the last time i was there I got a little abrupt with her. My daughter tries to make me feel better by saying at least you haven't got cancer!!. What we have may not kill us but its life changing and not in a good way. God bless and take care
Please keep in touch and let me know how you get on with t3. My whole family have thyroid issues I lived near Sellafield in the 50s when they had the radiation leak.
My sisters parathyroid was also damaged. She was on calcium tablets for years. Then she got hypercalcemia and kidney failure. She now has no calcium tablets but Vit D combined or something. Does your GP check your T3 levels. Have you had you latest results?
Hi sorry about your sister, not nice having hypoparathyroidism I have my calcium checked every 2 weeks. My endo checks my tsh t3 and t4 every 6 months now...I will send you my bloods with ranges in a bit ...what's yours ?
Hi my latest bloods and ranges
TSH 0.2 RANGE 0.3 -5.5
FT3 3.8 " 3.5 -6.7
FT4 18 " 10 - 19.80
PRE OP 2016
T4 17.9
TSH 0.1
T3 5.7
as you can see my normal t3 was all good before operation x
I agree your T3 looks too low.
Wil they not give you T3 or a private prescription to purchase from Germany. You can get 100 tablets of 20mcg for €30 in Germany.
Ask your Dr or GP to refer you to a private Endocrinologist one who is sympathetic using T3. Where in the country are you?
Hi I'm in Nottingham. ..my finances are very limited I wouldn't mind paying a 1off fee for a consultation with an Endo, the guy I see is an Endo surgeon and apparently I will be seeing his junior on Thurs!. The cost of the t3 from Germany I could afford but how much is private prescription and repeat private prescription. How do you talk privately on here. Tell your sister there is a good site on here hypopara uk...very helpful. They are also doing trials in certain parts of the country with Nat para ..a parathyroid replacement. 😊
Me private prescription cost nothing. I just had to pay for consultations. It wasn’t cheap seeing face to face. Then I had a telephone consultation which was short but not too expensive. As long as you can get your bloods done by your GP it’s only consultation costs. My private Endocrinologist is in Oxford. I live in Chester. So it was quite a journey just for a 30 min chat. I’m hoping the T3 works for me and gives me my life back.
I will let my sister know about hypopara site thank you.
You can PM by going back to the home page I think.
Hi thank you, I always assumed you had to pay for a private prescription, how do you get your repeats ? You dont even have to pay your private dr for the postage ?
No. Well that’s what his secretary has emailed to me. He wrote out a prescription for a years supply. Well that’s if I stay in the same dose. I’m only starting with 5mcg twice a day. You have to take it very low and slow for a month then gets bloods done. I too thought you had to pay for a private prescription. I got a private prescription from a previous Endocrinologist for NDT last summer and there was no charge for that either just the tablets. I was on NDT until Dec when my new Endocrinologist said I should come off them. I was feeling better but still nowhere near as good as I should have been. He then started me on liquid Levothyroxine for 8 weeks which I was very worried about I got really bad and still am now my T3 is very low and T4 high also TSH was too high. This is how he decided I need T3. Finally T3 is in the post. I just hope on hope it’s my answer.
I do feel for you. It does sound like you may need T3. Your vitamins must be optimal.
Can’t wirk out how to message you privately on here 🤔
Haha I can't work it out either how to send privately. . I really hope the t3 works for you and you begin to feel better. Please keep me informed my email is carroll998anderson@gmail.com
Let me know if they have allowed me to send email 😊. It will take me a few monhs to save up consultation fee but if scripts are free and the blood tests can be done by my gp think I'll be able to do it 😊
There maybe light at thd end of the tunnel for both of us 😊
I’ve sent you a PM. I was spelling your username wrongly. I think they might delete your message with your email address on for security reasons to stop any bad traffic.
Carroll998
Omg l lived in Whitehaven(Mirehouse) and my father worked there l can remember the sheer panic when it happened , but only my dad being screened x
I think the government tried to hush up the effects on the people caused by the radiation leak. The milk was banned but my sister still went to local farm and collected it. John Pilger wrote an article years later stating the radiation leak had spread across quite a large area abd a lot of downs babies were born. He wanted those people to contact him. Yes they only screened certain people, interesting to find out how many people from that area have thyroid issues
There was also high numbers of children with Leukaemia around Seascale l remember being told why there was no milk . We spent school holidays at St Bees and none of us would swim in the sea !
Your right total cover up much much worse than they admitted , jobs came first , there were always leaks when they were moving the rods x
You'd think there would be an online site for people who lived in that area at the time of the leak. If I knew how to do it I would 😊
There is an on line Whitehaven Site which l dip into but never ever mentions the most important disaster for the area
That's strange in itself
Hi , I remember playing in the fields and getting covered in dust from se
It’s only now we all start making connections with chronic disease , you sort of new instinctively that it was happening but there was huge secrecy around the fire and a few years ago there was a documentary l think on the radio with peoples experiences and the impact
SlowDragonAdministrator
BEFORE considering adding T3 vitamins must be tested and frequently need supplementing to improve to optimal
Have you got recent vitamin results and ranges to add?
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 with Hashimoto's
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Levothyroxine, T3 of NDT need good vitamins first
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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Retesting TSH, FT3 and FT4 after testing and improving vitamins and strictly gluten free.
Obviously good vitamin levels are essential for a baby's healthy development too
If, FT3 remains low then you may need the addition of small dose of T3. But most endocrinologists are extremely reluctant to allow T3 through pregnancy.
How much Levothyroxine are you currently taking and what are your most recent results?
TSH should be under 2, most Hashimoto's patients need TSH around or under one and FT4 in top third of range and FT3 at least half way in range
Hi SlowDragon, thank you for your response! I have put my vitamin results below. Regarding my blood tests, yes I have read on here that I should miss my thyroxine dose on the morning of the test and fast, which is what I do, I have them taken at 9.30am. I have responded about gluten below too. Are you able to see my first post? It contains my history and latest results.
Simply increasing levothyroxine dose can have counter intuitive effects, that is to say it can reduce cellular conversion of T4 into T3! Given the difficulties of obtaining and treating with T3 you could try splitting your levothyroxine dose to reduce any risk of negative feedback on DIO2 activity and if you can tolerate the inconvenience and there are no other side-effects you could try splitting three or even four times a day. When I switched from 100 µg dose is once-a-day to 4×25 µg doses every day my T4 and my T3 levels went up despite the increased risk of low absorption through presence of food in the gut at the same time as levothyroxine.
Hi, thank you Hashihouseman!! Interesting what you have said about having counter intuitive effects. Since I have been told to increase my levo from 75 to 100 per day, I feel worse.....Can you explain anything more about how splitting my levo through the day might help?
Our thyroid system is a complicated and delicately balanced system with much individuality. So our responses to hormone replacement and what our blood tests look like and how it all relates to symptoms are unique. Having said that there are some broad truths, fundamental relationships and functions that are common to all of us, even if the levels at which these things may have profound effects may be different. So in the case of increasing free T4 levels at some point they will definitely negatively feedback DIO2 enzyme activity thereby reducing intra-cellular levels of T3. Because this occurs inside the cells of the tissues where the thyroid function is enabled it isn’t always directly comparable with blood levels or wider thyroid signalling. In other words you could have a blood test which shows so-called normal levels and yet in your tissues you could be hypothyroid and that could be fluctuating depending on when and how much levothyroxine is digested and releasing free T4. Quite often we do not know what the peaks of T4 on our circulating fluids are because we do not test blood near to peak absorption times ! So.... to minimise any potential threat to sub-optimal t4 to t3 conversion by DIO2 it is logical to limit unphysiological peaks of free t4 from replacement therapy as much as possible while maintaining the total amount of t4 for long term body supplies. The other bit of related logic is to keep free t4 levels akin to with a normal healthy thyroid gland which secrete. I haven’t seen any evidence which suggests or demonstrates that a healthy thyroid gland secretes all our t4 in one big hit every 24 hours, rather it is a pulsatile but continuous 24-hour production rate and free hormone is bound and released to the active transporter mechanisms controlled via feedback loops etc. So, in theory at least, if we mimic natural thyroidal secretion by taking split dose of T4 say four times a day this seems that it would have the best chance of minimising any disruptive affect on intracellular DIO2 activity. Depending on our individual traits split dosing may be only necessary twice a day and not four times a day given whatever replacement dose in total we are supposed to be taking. In any event there seems to be little risk other than perhaps a slight decrease in absorption for us to experiment with split dosing...... my final caveat to all this is that I have not found any proper scientific evaluation of all this it is my interpretation of the theories and evidence from other aspects of thyroid metabolism plus actually doing it for several months and feeling the effects and seeing the blood test results from myself.
Wow! Thank you for all that, really appreciate it.
Hashihouseman
After your previous replies on other posts about splitting Levothyroxine dose, I am also just experimenting with divided dose of Levothyroxine, alongside my T3 doses.
Early days.....but no adverse affects so far
Recently tried reducing Levothyroxine from 125mcg to 112mcg...but couldn't tolerate this, after 3 months adrenals were kicking off. So thought I'd try dividing 125mcg dose instead
Previously taking 125mcg Levothyroxine at 11pm.
I am now splitting like this
7am - 25mcg Levothyroxine plus 10mcg T3.
3pm - 5mcg T3
11pm - 100mcg Levothyroxine plus 5mcg T3.
If this goes well I am considering splitting Levo into 50mcg x 2 and 1 x25mcg
25 years ago, when I first started on Levothyroxine the only way I could increase dose was by splitting dose up.
Yes, that’s interesting, about initiating or changing doses… seems to be a very important time for the potential for split dosing while our bodies adjust to different levels. Physicians and pharmaceuticals promulgate a myth that levothyroxine is practically inert! It has profound effects of and in itself as well as in its capacity to supply T3. Without having any notion of judging your replacement levels / needs, what strikes me about them is that they are levels which for me would make me extremely hypothyroid! When I first started splitting my current total levothyroxine dose into 4 It all felt good, then after five months and without any increase in replacement doses my free hormone levels started to increase and I felt the need to reduce both liothyronine and levothyroxine! I am now experimenting with just two split doses for convenience; 50 µg at midnight and 6 am or thereabouts and although it felt like hell at first I am also going for a period without liothyronine, taking frequent blood tests to see if split dosing alone can be beneficial to ft3 levels such as they appear in a blood test. This will also be useful evidence for NHS prescription robbers if my ft3 levels fall below the middle of the range and quality of life indicators and other symptoms et cetera persist in being worse than before.
I started splitting my Levothyroxine dose too. I seemed to have developed high blood pressure when taking it in one hit. Can’t understand why as for previous 11 years I just took it all at 7am and went to work and was fine mostly.
This year I’ve found out I’m not converting T4 to T3 very well.
I have to agree with Slowdragon and some of the other comments.
Improvement in the thyroid world takes time. As I recall it took me over 2 years to really improve.
Most people think meds are the key but you need v strong foundations first.
Diet gluten free( and for me it was sugar and dairy free)
Absorbtion needs to be spot on.
Vitamins must be optimal
Then adrenals and the thyroid meds can be adjusted.
( see drmyhill.co.uk and in the home page on the top right hand type in orchestra. This is a fantastic step by step guide to helping you improve your health.)
Personally I had to address everything. Yes things I did overlapped but I did sort out everything in that order and hung on to a v demanding job.
Without the info / update on the advice Marz gave you it’s difficult to be more specific.
I would not add t3 in now as it would appear you’ve lots to do that could easily help you.
Taking temps with a basal thermometer as per the article is a good start. But eating well without gluten makes a huge difference.
Thank you for your message! I have replied about gluten and vitamins below. I take my waking basal temperature each morning to track my cycle/fertility. My average follicular phase temp is 36.16 and luteal is 36.46. The article is interesting, thanks, it is a bit complicated for me though 
I might try tracking it through the day, although not sure what I would do with those results once I have them!! I understand what you are saying about it taking time, although it has been over a year on thyroxine now, and if anything at the moment i feel worse than ever!!
Wow, thank you so much to everyone who has replied to this post and sent me private messages, I was not expecting so many responses, I REALLY value all of your time and suggestions.
VITAMINS
A number of you have reiterated the importance of vitamins. Yes - I have had them tested. Results are as follows;
B12 - 491ng/L [>200.0]
Folate - 7.61 ug/L [2.7 - 18.6]
Ferritin 119 ug/L [10.0 - 320.0]
My GP was happy, does everyone agree that these are OK?
I can see no reference to Vitamin D being tested, so I will ask my GP, I have an appointment for a thyroid blood test/check up in a few weeks time.
DIET
Thank you to people suggesting gluten fee diet might help. I went gluten free STRICTLY (as in 100% free, I was really careful!!) for 3.5months and noticed no improvement whatsoever. I introduced gluten back in again and didn't really notice any difference so I am now eating a bit of gluten. For instance I don't eat bread or cakes, but I don't worry about eating soy sauce, gravy etc. I eat really healthily - lots of vegetables, salads, fruit, eggs, fish, meat, not many takeaways etc, and drink LOADS of water. I go to the gym 3/4 times a week and have a healthy BMI.
TEST RESULTS/HISTORY
I am not sure how to share my first post on here, but if you look back at my first one it contains my story and results.
If anyone has any further thoughts, I would love to hear them.
Thank you!!!!!!
Oh and i forgot to say - before I went gluten free i had a coeliac test, it was negative.
Picked up your comment on previous post about post nasal drip
This can be dairy intolerance......almost as common as gluten intolerance
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
blumhealthmd.com/2017/08/02...
Also when you were strictly gluten free, did you test thyroid antibodies again, before reintroducing gluten. Frequently people see antibodies drop on strictly gluten free diet and/or dairy free diet
Sometimes the only sign that diet changes are helping is drop in antibodies
B12 and folate perhaps on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Thanks for the dairy thing, I will perhaps give that a try. I also think I will try some vitamins - I currently don’t take any at all. Re antibodies- It’s so frustrating, I asked both my GP and Endo if they would test my antibodies again because I was gluten free and started taking selenium (both of which I didn’t see any point in continuing if they were not helping) Both of them said there was no point in reducing antibodies because they are not important. At the time I had just paid over £200 to see an Endo and couldn’t afford to pay more to have the tests done privately especially as medical professionals were telling me it’s pointless.
Yes NHS and even most private endocrinologists consider antibodies irrelevant
I have been forced to get all my blood tests privately (like thousands on here) as, even though I am on NHS prescribed T3, NHS won't test FT3
I put all my results on a spread sheet, so results can be compared over time
All the medics are absolutely fascinated to see TPO antibodies dropping steadily at each test once I went strictly gluten free. Now seem, after 3 years gluten free, to have reached a plateau
I am not dairy free, but considering it, to see if this would lower antibodies further
Its a disgrace that you are prescribed NHS T3, and yet they won’t test your T3 levels!! That makes no sense whatsoever!! Thank you for your help, I feel so much better hearing other people’s stories. I also have a spreadsheet, I honestly think that getting a copy of test results is THE most important thing because it allows us to research and take some control over our own health.
I am just relieved to be still getting my T3 on NHS. I would rather I pay for testing than the other way around!
Thousands have had NHS T3 prescription withdrawn, directly against national guidelines
Recent media coverage
thyroidtrust.org/media-cove...
medscape.com/viewarticle/90...
Debates in parliament
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