In a couple of weeks, I'm going to finally be seeing my Endo in person for the first time since mid-July. In the last few months in particular, I've been struggling a lot with hypo symptoms (puffy face, abdominal bloating and constipation, never-healing mouth ulcers and I can hardly keep my eyes open for a good chunk of the day) since I was told to stop taking 200mcg Levo and instead go down to 150mcg, then back up to 175mcg. My most recent bloods reflect that my conversion is quite poor, so I'm really starting to feel desperate. I so badly want to even just try T3, just to see if it makes a difference.
Does anyone have any advice on what I could say to my endo to present a strong case and put my best foot forward? In my last appointment he seemed reluctant, but not against prescribing T3. What information do I need to show him to get him to give me a chance?
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lau99
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Hi Slowdragon,I've been on 175mcg for about 3 weeks now, so not quite long enough yet for a new set of bloods to be taken. I only take Accord/Almus brand. I shall ask the GP to take these bloods before the appointment, and will check back here with results if I'm successful.
You need blood results showing TSH, free T4 and free T3 ... which ideally show quite high free T4 but free T3 much lower in range than free T4. That would show that the levo is doing its work in boosting free T4 but that you don't then convert the free T4 into enough free T3.Good luck - let us know how you get on x
4 weeks ago you were on 150mcg and results showed you were undermedicated. You have upped your dose since then so you would need to wait another few weeks and post rests so we could comment as to how well you are converting.Until tsh is down 2 or under with ft4 high in range you cannot really look for conversion issues.
Thank you for this insight, Lalatoot. I'm just so fed up of feeling stuck like this might be too early to really say but I can't really see the 175 working much, either.
Yes but to make a case for getting T3 you need to show that: you have given levo a full trial
you have supplemented vitamins as necessary and got levels optimal
you have tested negative for coeliac/gone gluten free
your TSH is low or under range and your FT4 is high in range while your ft3 remains low in range.
It was the above arguments that got me a trial of t3.
You also need to be aware that T3 is not necessarily a quick fix. That for some folks FT4 and ft3 both need to be adjusted to feel well. For me this has meant a year of adjusting levo and lio doses. I don't want to be negative; I just want to be realistic - it can take a lot of small adjustments slowly to find the best doses of levo and lio and when you start on lio you have 2 doses to adjust one at a time with frequent blood tests.
Thank you for this further insight, this was just the type of answer I was looking for. I just want to be prepared for what I might hear at my appointment. I can cross at least one of these things off of the list because I have tested negative for coeliac. My bloods from being on 200mcg also looked quite similar to how you are describing, but they have been rendered somewhat invalid by the fact that I still took my Levo the morning of the test. Since this Endo didn't seem to feel that this mattered/confounded the results, I think this might also help my case, but I'm not sure.
Thanks Slowdragon. I'm actually a post-TT Graves' patient, so no Hashi's to worry about I tried gluten free for about 3 months earlier this year and didn't recognise any changes.
To see how good you can get conversion of Ft4 to Ft3
Levothyroxine must be increased to high enough levels (at least Ft4 is in top 1/3rd of range)
Always same brand of levothyroxine
All four vitamins need to be OPTIMAL
With Hashimoto’s, frequently absolutely strictly gluten free and often dairy free too
If, after all these steps, Ft3 remains too low .....then adding small doses of T3 alongside levothyroxine is next step
Finding the correct mix can mean lots of tiny adjustments in doses and ..........often with T3, timing of split doses can be important
One other point.....even if you get T3 on the NHS.....(which in itself can be very difficult) .....you are likely to need to regularly retest TSH, Ft4 and Ft3 together....often privately.....as NHS labs frequently refuse to test Ft3
A scientific argument that might work is if you get your T3 and t4 tested then work out where you are in the ranges. If you're higher in the t4 range (%) than in the T3 range, it will suggest you are not converting well.
Please reread your replies from your post last month regarding conversion of T4 into T3 :
Diogenes explained very well where you are in all this - and it is not more T4 :
The conversion ratio when on Levothyroxine only is said to be 1 / 3.50 - 4.50 : T3 / T4 ;
Simply divide your T3 result into your T4 result and you are way off and outside the acceptable levels :
Both T3 and T4 need to be balanced in the ranges and both at high enough levels to give the patient back their well being :
You have been compliant and tried various dose levels of Levothyroxine without an improvement in your symptoms and you need to have a trial of T3 - Liothyronine alongside a possible lower dose of T4 - Levothyroxine.
Thank you, Penny. I've just come back from re-reading all of the comments I've gotten on my previous posts, and just like the ones I've gotten on this one, they are all very helpful and I really appreciate everyone coming together to try and help each other get to the bottom of all this mess...that being said, I'm just so used to going to appointments and getting shot down or being given disappointing news, that I just want to know if there's anything at all I can do to have my doctors just, at the very least, be even slightly empathetic to me. Even if they give me a trial out of pity, I'd take it. In a way, it feels like being on carbimazole all over again; I go to appointments and sometimes end up crying in the doctor's office and on my way back home, because I'm struggling so badly with my illness and the medication and in the end all they do is prescribe me a stronger dose of it.
It seems like no matter what my numbers look like, or how "nice" my doctors seem, maybe their hands are just tied, and they can only do so much. Like it doesn't matter how much my bloods might say I would improve on T3, if my doctor has made up his mind, he won't budge. I've been in that position so many times since being diagnosed with Graves', and it led me to making the worst decision of my life, thinking I would be like normal again. Really, I'm in the same place, but now with no thyroid, and no possibility of ever going into remission. I've given myself a life sentence to always be unwell and on medication - I just feel like the least a doctor could do is at least let me try my best to be well...I don't think I can really afford to go private and I don't want to completely sever my ties with any doctor by self-medicating. If I somehow manage to go on T3 and it doesn't work...I don't know how I'd cope anymore.
This situation with a powerful CCG restricting endo's doing their job is simply unacceptable and I'm so sorry you are in this situation.
If this were 10 years ago when T3 was a similar price to Levothyroxine you would not be in this ridiculous predicament.
You have been totally compliant and followed the directions of the trained medical professional and this proves beyond any doubt that treatment on monotherapy with Levothyroxine does not work for you.
Monotherapy therapy with T4 thyroid hormone does not work for thousands of people -this is not a surprise, but a fact, as when you haven't a thyroid you have lost your own thyroid hormone reproduction which would be a measurable amount of T3 and T4 :
You are not unique, different, odd, or any other stupid comment that may have been suggested or levelled at you as a reason why T4 isn't working for you :
T3 will work for you - it is the active thyroid hormone that the body runs on :
You are as deserving a case as anyone else :
You are not a ' pity patient ' - you deserve the correct medication for you :
As you know I gave up with the NHS and resorted to self medication and so much better but fully understand your reluctance to do this :
No one chooses to self medicate and the current rules and regulations are not fit for purpose but dealing with the NHS simply exacerbated my symptoms as the stress and anxiety mounted with every NHS appointment with a medical professional reciting dogma to me.
No one chooses to buy their own medication when clouded with self doubt, no provenance of product and websites that disappear as soon as you have paid your money.
I am 73 and at the end of my life, you have your whole life in front of you and deserve the correct medication from a medical team who are there to impart knowledge, care, and respect and to treat you medically as they would expect to be treated themselves.
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might be too early to really say but I can't really see the 175 working much, either.
Doctors appointment advice if anyone still up.
after my appointment yesterday
Can someone tell me why is my TSH going up instead of coming down.
Had my appointment with the Endo Consultant - still confused!
