So… I've been finding it very difficult to be consistent with my dose of late.
4 months ago medichecks blood test results on 125/100 levo pr day were :
CRP 1.2 (0-5)
Iron 66.5 (13-150)
B12 (Active) >150 (37.5-150)
TSH 2.06 (0.7-4.2)
FT4 17.1 (12-22)
FT3 3.8 (3.1-6.8)
Thyroglobulin antibodies 614 (<115)
Thyroid perioxidase antibodies 208 (<34)
A private endo started me on 30 Erfa thyroid + 50 Levothyroxine once a day
After 8 weeks of taking this I'd had all sorts of ups and downs, mostly very similar to the downs of levothyroxine only (most notably crippling fatigue shortly after taking; cramps in calves and feet the following morning before taking meds and really low mood; having to have power naps most days) - just didn't have anything like the miraculous improvement I'd hoped for. (No bloods taken as Endo said he was more interested in how I felt) Morning temp rose initially and then returned to 35.7/35.8 {same as when on pretty much any dose of levo - doses changed multiple times over last 2 and a half years)
Endo suggested to change daily regime to 30 Erfa + 25 Levo in am; then 15 Erfa at pm which I did religiously at first, but found myself experimenting due to feeling just as bad. I have freezing hands and feet most of the time, but often with shaking hands and find it difficult to breathe and have very low blood pressure still. Also, my stomach is just getting bigger and bigger and bigger,
I'm now at the stage where I've been taking the equivalent of 100 levothyroxine in various combinations of Erfa and/or levothyroxine.
But 'cos of feeling bad, I keep changing routine - I know perfectly well this is not helping me, but I keep just keep panicking.
The question is, if I haven't done one consistent combination of erfa and levo for at least 6 weeks, is there any point in doing a blood test?
(Currently been taking 45 Erfa in am and 15 Erfa at 4pm - to be fair, temp has gone up to 36.0 in am, but bp in am this morning at lowest was 88/53 p65 and I feel absolutely knackered and I've only been doing this for last 5 days). I did have a couple of days of not needing a nap, but have been struggling to get enough air today and am absolutely shattered.
1. What do you recommend - blood test or just soldier on for another 6 weeks regardless?
2. Would you change routine?
3. Should I be taking Erfa sublingally or swallowing it?
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woofa27
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I think you have been working on the "traditional" conversion where one grain (60 milligrams) of desiccated thyroid is regarded as about 100 micrograms of levothyroxine.
Reality seems to suggest that one grain = 75 or less (e.g. 65) levothyroxine.
Must admit, I feel surely I'm on too low a dose/ my hormones are still out of whack, but I've been basing my dosing around the quantities the endo suggested and kind of feel in a bit of a muddle now. (Not so easy to go back for advice when you know you haven't been consistent and it costs so much just to be told go away again for another 3 months).
…Patience never was my vitue
If you were me, would you be inclined to up the dose? Or continue as I am for a further 5 weeks, test and then decide what to do?
“It’s the sticking strictly’ bit that I’ll struggle with”. I am certain most of us have a problem with this. I worked with my GP for a year, doing it ‘their’ way. Extremely frustrating with no guidance whatsoever. An enquiring mind and no guidance is not a good combination in our situation. It makes you antsy and you want to get on. It however makes us find this forum, so that’s good. The problem is it’s difficult to see what’s going on when doses and combinations are changing. I have found, after adhering to the advice of ‘watch and wait’, to be stabilising in itself. It allows you to see what is and what is not happening and less likely to panic at odd turns of events - although that can’t be ruled out altogether as we are all keen to get well. We want rid of these symptoms ASAP. Ideally you need to wait about 6 weeks after your last change to test and see where you are at. That’s the time to make changes, when you have the facts. It’s a pain but I am convinced you just hold yourself back all the more with no clear picture emerging. Honestly. Best Wishes.
I know so so well that you are totally right in everything you say arTistapple!
I know part of it is my brain just wanting to get to grips with what on earth I'm throwing at it.
I just SO SO WISH there was a more effective way of knowing what dose to pick to stick to for those 6-8 weeks.
Acceptance of the situation is what's required I guess.
Thank you for your wise words.
Also, I see from your most recent post that things had been going much better for you, but have suddenly gone a bit awry and I send you all my best wishes and hope that you can get yourself back to feeling once more "like [your] life is worth living" - GOOD LUCK!
And thank you so much for reaching out despite feeling so unwell yourself.
Yup the changing situation and the speed with which it happens is forever surprising it seems. I stopped T3 because this stuff (you read on my last post) kept happening. My endo wet herself and effectively stopped my T3 adventure and refused to treat me. I am rapidly coming to the conclusion that not only was I frightened off by her and my blood testing company, both of whom I over relied upon for critical thinking but frankly, I was gaslit by both. Neither knew enough about my situation/suffered from lack of critical thinking skills/lack of true knowledge on the topic and at a time when my own critical thinking skills were still too dependent on medics! I believed in them. I think it was humanbean wrote about the fear engendered by the fear of thyroid hormones. It has helped me get over a big hump! Still not super confident but pushing on with the help and experience right here on the forum. Medics have assured me I do not have Atrial Fibrillation which is the big fear re: hormones. However I am sticking to sorting out my supplements at the moment. Even bringing them onboard carefully, to check they do not upset the status quo. Just generally being methodical and taking greater care with something precious to me. Turns out that’s me!?! No problem reaching out. I can’t tell you how gratified I was by the replies from the forum. They helped me out no end when I was in a right state. Nowhere quite like it for us to take our particular problems.
“Like your life is worth living.” No-one is more surprised than me after the thoughts I have been living with for more years than I can remember.
As for picking a dose. I returned to the last dose I felt I could deal with. I had not been good on the dose but I knew my body (I) could deal with it. That was what became important to me in the mess that was. Live to fight another day! Best wishes.
I switched from levothyroxine/T3 to a NDT. Have to say it wasn't a phased in as you seem to be doing but a straight switch. My doctor however had me initially on a very low dose of NDT (not equivalent). He gave me a schedule to titrate up. In the early days I just could not tolerate such a low dose.... I felt soooo ill so I shortened some of the periods of time. As I got closer to what he'd estimated I should be on I went back to 6-8 week test and adjust.I don't know if this helps.
I'm wondering why you didn't just increase levo and/or add some T3 to your dose 4 months ago? Is your private doc by chance in Belgium at that one clinic ? If so i can give you some suggestions, feel free to PM me.
I tried Erfa for 2, or 3? years and finally gave up. I had all sorts of side effects that admittedly were probably due to low b12, but now i'm on a combined T4+T3 regimen the last 6 years and it has been working great. At some point i tried to go back on Erfa and it was a big mess again so i switched back.
Anyway obviously we are all different and many love NDT. I hope it works out for you.
Erfa I had strange results on.. I found Armour much better. I was on another brand but NHS dropped it off its Formulary so had to switch.... Lol. It's all trial and error. What suits one doesn't suit another. Glad you found your best way forward.
Hiya jade_s, I totally hear what you're saying, but tbh, I couldn't quite believe that anyone was agreeing to a trial of any t3 containing med and was so excited about it, thinking it would be a game changer, that I grabbed what was being offered with open arms.
In an ideal world and based on the last 4 months experience, I think you're absolutely right, T3 added into the t4 kind'a seems like it might've been a more straightforward addition, but sadly that was not on offer. I am planning on quizzing the endo about whether this option is available through him at my next appointment.
And the problem I've been having with the t4 is that it's almost as though my body is saying enough's enough and so about an hour after taking it (sorry for the detail) I'd have to rush to the toilet and then my hands and feet would go icy cold. So I'm not sure adding more of that would've helped. One of the biggest problems I've had with t4 and thyroid meds generally is with my bp being woefully low and this seems weirdly to get lower the more t4 I take.
I'm so glad you're so feeling so much better on the t3/t4, it's encouraging to hear that there may be an answer out there for us all.
Hope you continue to go from strength to strength, (🤞 sounds like you may have found your answer) and thank you for your reply.
My doctor told me that my cortisol levels look fine; I'm not aware of lactose issues and I'm doing my best with my vitamin levels. Thank you soo much for your support, jade_s 😀
Yeah, I think I may have to see if the endo is able to trial me with synthetic t3, 'cos then I could maybe dose based more closely around a normal circadian/thyroid hormone rhythm.
My doctor agreed to test my cortisol about a year or so ago and did a morning bt and said my levels were within normal range.
Would you recommend any other way of checking out cortisol levels and how to treat them?
I would definitely say to get your saliva cortisol and not blood, blood is total and saliva is free. Also endos tend to look at cortisol the way they do thyroid - if it’s in range they don’t care about it, but it needs to be at the top at 9am. X
Woofa 30 erfa is 18 MCG t4 and 4mcg t3 and is also known as half a grain. So your starter dose left you woefully undermedicated.You were on 112.5 levo per day and your ft4 was not near the top of its range so you needed to continue on that level of dose of t4 and gradually add in some oral t3. This could have been done by adding in t3 liothyronine starting at 5 mcg and working up to 10mcg initially. Or as you were directed adding in erfa. You need to add t3 slowly so the 30 erfa was the correct starting dose but your levo should only have been reduced by 25mcg to compensate for the 18 MCG t4 in the erfa.
Our body likes stability partic with t3 so I would decide on your doses and stick with them and give things time to settle.
i agree Lalatoot, dose lowered far too much at start , so not surprising doesn't feel ok.
Woofa ......."I'm now at the stage where I've been taking the equivalent of 100 levothyroxine in various combinations of Erfa and/or levothyroxine" i think that's part of the problem here .. i don't think you have been taking the equivalent . the maths just doesn't add up.
112 mcg T4 compared to
50mcg +30mcg Erfa
50mcg T4 (levo) + 18mcg T4 (erfa) + 4mcg T3(erfa)
if we assume T3 is 3 or 4 times a 'potent' as T4 to do the maths , then that makes:
36mcg T4 (erfa) + ?25mcg T4 (Levo) + (3 or 4 x 8mcg = 24/ 32) = 85/ 93 mcg T4 equivalent so overall dose is still significantly lower than when you were taking just levo.
(or are you taking 60mcg erfa plus 50mcg Levo now ? sorry if i've misunderstood).
if so ? , that would be a much closer equivalent to your original 112mcg levo, giving you :
50mcg T4 (erfa) + 50mcg T4 (levo) + (3 or 4 x 8mcg = 24/32) = 110 /118mcg T4 equivalent
NOTE for future readers: this is purely a 'maths' illustration. done to try and get a very rough idea of 'equivalence ' of the overall amount of thyroid hormone' in various combinations of NDT +levo , done by allocating an assumed 3 or 4 x 'potency' to the T3 component ... in reality it is not a true 'equivalence', because T3 has very different effects to T4 and will obviously 'feel' very different .
Nice maths work Lalatoot! And no, you haven't misunderstood, 60 Erfa in total now, - dose changes over last 3 months:
50 levo + 30Erfa (1st 8 weeks)
25 levo + 45 Erfa (after 8 weeks)
60 Erfa (now in various dose combinations throughout day)
Would that explain why I feel so anxious and light headed and exhausted beyond all comprehension. And why I have trouble stringing a sentence together? Weirdly tho, although my hands are icy cold, they're shaky a lot of the time - what's that all about?
• What would you do with your dose if you were me?
(last 7 or so days I've taken 45Erfa in am and 15Erfa at 4pm and my temp has been fluctuating between 35.9 to 36.1 throughout the day)
• Oh, and you advised me to swallow my tablets, would you then only take them once a day or more frequently?
(Apologies in advance for all the questions - I'm feeling very lost at the moment)
Thanks for all your input and impressive calculations!
so not taking any levo at all now ? just 60mcg erfa ?
that's even less than i thought then
60mcg erfa contains 36mcg T4 and 8 mcg T3
eg. 36 + (3 or 4 x 8mcg = 24/32) = 60 or 68mmcg T4 'equivalent'
Not really surprising you feel cold and can't string a sentence together on that .
Your dose of Erfa almost certainly needs increasing , but you also need consistency .with the dose you take .. changing it around frequently will also make you feel pretty horrible.
i'll tag Lalatoot for you so she see's your reply .. i'm not the best person to advise on how to increase Erfa when going by symptoms ,as i've only used levo . i'll tag pennyannie see if she can advise better as she takes NDT
is your doctor not doing any blood tests at all ? ... on such a small dose your symptoms are much more likely to be from undermedication than overmediation, but without doing blood tests it's hard to say for sure which is which.
Endo originally said we'd dose by symptoms, but clearly expected me to feel way better than when I first went to him, with a requirement for just a few tweaks after the initial 8 week trial.
I'm wondering if I should simply soldier on for another 5 weeks then blood test and then I've got a proper notion of what the heck is going on and a better idea of what my next step should be (though I did wonder if the 4pm dose might give misleadingly higher levels as I won't have left 24 hours since last dose?)
I do find that the 4pm dose warms my hands and makes me feel vaguely human for a bit, in fact last night at one point my temp went up to 36.5- very exciting!!!! Sadly back down to 35.9 this morning and sooo dizzy (bp was 87/57 on waking).
I cannot thank everyone enough for all the time and input you're all giving me, it really is so appreciated.
Looking back it appears you have Hashimoto's Auto Immune Thyroid Disease and many suffer with leaky gut syndrome and or SIBO and this needs to be sorted out before you'll likely find any thyroid hormone replacement working well for you.
As you say you feel your stomach gets bloated this is but one symptom of the above and you will probably feel improved cutting out gluten whether checked for celiac or not, and looking at other food allergies such as dairy, wheat and convenience foods, and start to plan to eat clean and cook from scratch.
No thyroid hormones works well until the core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - I now aim for a ferritin at around 100 : folate 20 : active B12 75 ++ ( serum B12 500 ++ ) and vitamin D up at around 100:
Do we have any current readings for the above ?
The thyroid hormones are broken down in the gut and liver, so here again, if your gut health isn't good your ability to utilise the thyroid hormone will be compromised.
You might like to read around on Hashimoto's AI disease and the research of Dr Izabella Wentz comes well recommended - thyroidpharmacist.com
Having Hashimoto's throws another spanner in the works as your own thyroid hormone production tends to be erratic as your immune system systematically sets about destroying your thyroid gland, and for some people taking Natural Desiccated Thyroid causes further auto immune upset and a T3/ T4 synthetic treatment option preferred.
Whichever way round this you go, your dose is likely not enough and getting a blood test, just a finger prick blood test for TSH, Free T3 and Fee T4 , which you can do yourself might help us better help you.
There are several private blood test companies listed on the Thyroid UK website - thyroiduk.org who offer this service at around 30 pounds.
P.S. Just noticed your post a year ago covers all the above in greater detail ;
Yeah, I'm now thinking maybe basic blood test now, then probably continue on current dose and blood test again (pos with vits as well) when I'd have been doing the same thing religiously for 6 weeks.
Then I'll have a base read and have allowed my body a chance to stabilize, so have some usable data?
Then reassess.
Think that's probably the thing to do - I find It's way to easy to get into a psychological pickle when you feel so knackered, weird and spacey… pesky hormones!
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Everyone was raving about it and i thought this is better than T3! 
Blood Test
Should I be asking for an increase in Levo?
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