Hi guys just wondering if any of you great people could give me some advice... I’m at my wits end! I have ME/CFS Fibromyalgia chronic pain which cause depression/anxiety so don’t know what’s causing what as well as thyroid removed! Really struggling with Levothyroxine...Endo Happy today with results below!
Had all thyroid took out after cancer over 3 yrs ago but still struggling with Levo... been taking oral 15ml (150 equivalent) for 3 months now... was on tablets for 3 yrs before, all different doses! Endo changed to liquid see if any better than tablets but unfortunately got covid same time (double jabbed) so hard to tell!
I seem to tolerate 125 bit better (apart from suicidal thoughts worse on 125 than 150 ) but TSH goes too high so get told to go up to 150 again as told cancer could come back if not! This has happened 4 times now... dose gets changed nearly every 4 months!
Tried a 3 month trial of 10 T3 with 100 T4 last year but felt even worse!
Endo rang today with blood results taken first thing before Levo
TSH 1.4 (0.27-4.2)
T4 21. 2 (12-22)
T3 4.6 (3.1-6.8)
Told me to stay on this dose for two months as blood fine, then check blood again! Said will have got over any lingering covid symptoms by then... breathless, dizzy, nausea but must admit these are slowly getting better with these but got lots of other symptoms cannot cope with: Hot, headaches, prickly, itchy (especially at night,) palpations, jittery, really bad muscle pains (some could be Fibro) ) but seem more constant!
Night terrors but not as bad!
Sorry for long essay but could anyone please offer any advice to my question below ... just don’t know what to do feel so unwell all the time affecting mental health really bad as well
Should I try upping or lowering dose... wondering if to try pushing through and upping dose to get T3 higher through the range (as read on here can feel better when it’s in top of range) Realise will push T4 as well! Or do I need to reduce it again to feel bit better despite it pushing TSH up again!
My Endo was quite rude 3 months ago when TSH high and said TSH is most important at the moment and to stop looking on internet... then went in to give me his full Consultant title! He is happy with my results now and says if I increase it will make palpations worse... which bizarrely mostly wake me up about 2/3 hours before T4 due, seems to be getting more worse as time goes on... take it at lunchtime... long long story... basically not slept at night for years... 5am/6 drop off... know this is not ideal but only way I can cope)!!! Strangely Palpations wear off usually within couple hours of taking T4!
Think I’ve read on here that you can get palpations when under medicated as well
As over, excuse me if wrong... brainfog lol so not sure what to do.., all I know is need to try changing meds wether up or down... does that seem sensible or should I listen to Endo🤷🏼♀️
Thanks in anticipation guys!!
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Blanche1960
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What happened when you trialed T3? In what way did it make you worse? Because you really could do with some. You are a poor converter and your FT4 is too low. Endos don't know enough about thyroid - diabetes specialist? - to understand that.
Did you start taking T3 at 10 mcg? That is often too high a dose to start on. We usually recommend that people start by taking 5 mcg for a couple of weeks and if that goes ok, to increase it to 10.
How are your nutrients? Have you had vit D, folate, vit B12 and ferritin tested? Low nutrients can cause poor conversion. Have you ever tried taking selenium to help that?
Your endo sounds like a dead loss! Although you do need to keep your TSH suppressed at the moment due to the cancer. But it really doesn't tell you much about your thyroid status. And, he doesn't seem to realise that the easiest way to keep it suppressed is to take T3. Doubtful that increasing your levo would make your palpitations worse. Levo (T4) is basically a storage hormone that doesn't do much until it is converted into T3. As your T3 is low, increasing it would probably get rid of your palpitations altogether - yes, you did get that right, they can be a hypo symptom.
Increasing your levo is an option, but it would take your FT4 over-range, and might not even raise your T3. I would not recommend reducing your levo because that would also reduce your FT3. What you really need is to be able to take T3 without a problem. Which is why you need to know about the status of your nutrients. Low nutrients could cause problems with taking T3, as could low cortisol. Have you ever had your cortisol tested?
Thankyou for your reply... I was on 125 levo but given 10 T3 and 100 T4 in October last year but made me feel even more rotten.. migraine, sick, dizzy sleeping much more etc etc told to take T3 in one dose but did try splitting it but didn’t make any difference! Endo stopped it end January this year as said wasn’t helping! T3 was only 3.1 after finishing the trial so looking back I probably wasn’t taking enough but couldn’t tolerate 10mcg... should I have pushed to increase it instead of listening to Endo and stopping it maybe! I had vitamins etc tested just before starting the T3 combo said all fine apart from folic acid which Gp gave me 4 months supply, said don’t need any more after that!
I take Better for you oral Vit D plus K2 and magnesuim never tried selenium.... will give it a try though now!
Will get up to date Vits again privately if need be!
But, never just take your doctor's word for your results being 'fine', always get the exact numbers: results and ranges. Doctors don't know much about nutrition because they don't 'do' it in med school.
I may well be different to others but trialling bits of T3 - ie 2.5 or 5mcg, 2 or 3 times a day was intolerable for me. I only got better taking T3 by taking it in one go first thing and ultimately increasing it from 10 to 20. After I started taking the 20 in one go I found it ok to take it in 2 x 10.
I now take 12.5/20/5 across the day - so quite a bit (along with 100 Levo which I’ve no idea if I actually need or not) and have got my T3 over 6. It has really helped my energy, back and hips, nails and hair - just still got poor sore feet!
So yes maybe try T3 again and stick with it and even try taking a bit more.
Ps sorry think had cortisol checked...also checked for Addison’s.. know Endo did tests where bloods taken then given an injection or a tablet then tested again straight after! Sorry so vague... one of blood tests was sent away and took 4 wks to come back not sure if that was cortisol! Sorry can’t absorb things my heads so mashed got terrible memory!
Thanks Greygoose yep be a lot easier but I did ask thyroid specialist nurse who I used to see in oncology (before covid ) for blood results twice last year but never got back... been told now by my snotty Endo not to contact them Anymore go straight through him with any problems, says they can only offer tea and sympathy, but yet they run thyroid clinics for oncologist at a massive cancer hospital!! He scares the living daylights out of me, despite my daughter being there most of the time to speak up for me, I struggle to find words and get them out (M.E) find it so hard to explain how unwell I feel... he rushes through my appointments, butts in and even dictates letter to GP while on phone appointments to shut me up I think! I can tell he doesn’t get me at all, end up crying after speaking to him...but can’t afford to go private so have to put up with him! Sorry for easy again lol
Those are all signs that he has no idea what he's talking about. They are diversion tactics to avoid questions he can't answer. But, if they don't give you your results, they are breaking the law, and they need reminding of that. You can take steps to force them to give you your results. Perhaps best not to ask nurses and doctors for them, though. Always go through the receptionist.
Hi.. thanks for replying it was the oncologist that referred me to him... works along side him so thought he would be a good Endo... I have actually spoke to two different Endos in his dept over last year... one professor actually discharged me as bloods in range( Tsh 2.9 T3 3.1. T4 18.7 )said must be all M.E/Fibro causing symptoms! Ended up back after a hospital check up when TSH was 6 not sure what T3/T4 was!
My GP is just as bad... as long as results in range not bothered... they didn’t know that hospital like to keep Tsh under 2 not sure know if they believe me or thought I was making it up but luckily most of bloods checked at hospital and not there!
Sorry for long story what I’m trying to say is don’t think they would but could get my daughter to speak to them for me!
Don’t excuse yourself! There’s no need to!Ohhh that’s is… sad and annoying. (Sorry, my brain can’t think of better words , these are all I could find! 🤭).
I don’t get how docs don’t understand that natural levels of TSH, FT3, FT4 etc are different than when you’re under treatment?!?!
Also the ranges are complete BS!!
I’ve started loosing clumps of hair with my TSH at “only” 2.68 but obviously no one looked into it then and I was none the wiser. (I was not and still am not being treated.. long story).
So I fully understand. If you want to rant… I’m here ♥️
Ah plesse don’t apologise I’m useless with finding words lol Thankyou so much that is lovely of you to say, so kind! So sorry your not getting help you need.. it’s a minefield isn’t it! not good your hair coming out, mines ok at the mo but very thin and receding! Take care ❤️
I'm sorry you have an endo who seems stuck on upsetting patients, rather than thinking of you as a human being.
The accepted conversion ratio when on monotherapy with T4 Levothyroxine only is said to be : 1 / 3.50 - 4.50 - T3/ T4 with most people feeling at their best better when they come in at 4 or under.
So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting 4.61 :
My conversion was further " out " than yours so maybe we can get your ratio down a bit :
It could improve with optimal vitamins and minerals, do you have any current results and ranges on ferritin, folate, B12 and vitamin D .
Conversion can also be compromised by any physiological stress - emotional or physical , inflammation, depression, ageing or dieting so some things out of our control .
So, are these results on the liquid T4 ?
I really do think you need to look again at introducing some T3 as you have " lost " your own natural production of T3, though understand you couldn't tolerate T3 last time around.
The only other option is Natural Desiccated Thyroid but it's a tablet, referred to as a grain and contains all the same known hormones as that of the human gland, namely T1. T2 and calcitonin plus a measure of T3 and a measure of T4 .
NDT is made from pig thyroid, dried and ground down into tablets referred to as grains and was used successfully for around 100 years to treat hypothyroidism prior to Big Pharma launching synthetic options in around the middle of the last century.
I'm with Graves post RAI thyroid ablation and manage lingering Graves, thyroid eye disease and hypothyroidism and have found NDT much softer on my body and am now over 3 years into self medication and much improved on this full spectrum thyroid hormone replacement.
I did first try adding in some T3 to my T4 but felt a bit turbo charged:
The second brand of T3 I tried gave me such terrible headaches I couldn't function, so I had purchased some NDT - just in case - and it was a very smooth transition and I haven't looked back.
Hi Pennyannie, thanks for your reply! Yes the results are with the liquid T4.
Could ask Endo in next appointment to try T3 but interestingly I have seen in here about NDT... but not sure where to get it from... am I right in thinking NHS don’t prescribe it?? So glad you feel better with this, sounds like you've been through it too... I had RAI after surgery too!
No Vit results yet going to get them done next week but had course of folic acid earlier this year and take Oral Vit D with K2 and magnesuim!
You could be right maybe not converting as do suffer with lots of stress/anxiety/depression made worse after M.E/CFS/ Fibro/menopause (I’m 61) ongoing for several years... really sensitive to meditation can’t take anti depressants/most painkillers as make headaches/migraines worse, struggle to function most days... sorry sound like hypochondriac lol!
Well NDT was available on the NHS and is still meant to be on a " named patient only " prescription and is still prescribed by some doctors and specialists, both NHS and private.
As I understand it, the doctor needs to support you in this and apply to the local CCG ( the purse string management team ) for special funding as NDT is more expensive than T4 ;
If you go into openprescribing and then into analyse - you can see by surgery or CCG how your area compares in the league table and how active your surgery is in prescribing either T3 - Liothyronine and / or NDT - for which you enter the most well known brand - Armour.
There are pharmacies listed on the Thyroid UK website who supply NDT but you do need a prescription, and privately, I think, this might be the quickest easiest option.
I failed to get NDT through my surgery and then tried for a trial of T3 to no avail and have ended up doing it for myself as you can buy all thyroid hormone options without a prescription through the internet.
The issue for you might be that it is in a tablet form and each of my tablets, referred to as grains, contains trace elements of T1. T2 and calcitonin plus 9 mcg T3 + 38mcg T4.
With NDT it's very much a case dosing to the relief of symptoms and not a blood test, guideline or range, which I find quite refreshing and works for me.
Years ago there were no blood tests, as doctors needed to listen to their patients and treated the " whole " person, and needed to have some success in order to get paid and recommended.
Your conversion isn't far out, optimal vitamins and minerals may well improve how you feel, and yes all these " other " health issues are not helping, but I do wonder if they might be relieved with optimal thyroid hormone replacement.
The reality is though by not replacing the T3 that your own thyroid was supporting you with, you have in effect been down regulated by some 20% of your overall well being and whilst your body will try and compensate for this short fall but overtime this will pull you down further as no one can keep being in overdrive, wearing yourself down even further.
Hi again... this information is really informative thank you soo much! I only asked to try liquid over tablets three months ago just to check if felt any better but tbh no difference so no problem in trying grains of NDT!
I did try asking my Gp before this for branded Levo as kept getting different brands but said CCG wouldn’t allow it but shopped round pharmacies and managed to always get Mercury Pharma!
It’s such a minefield isn’t it but so happy for you feeling bit better sounds like you’ve gone through such an ordeal to get there so good luck with everything!
Sorry...am I understanding this right if Endo or Gp won’t prescribe NDT because of funding... I can buy it off the internet privately or do I still need prescription from Dr then buy it from pharmacy online’
It has recently been acknowledged that there are many people can't tolerate certain brands of T4 - and if this is the case your doctor can specify on the prescription the brand of T4 that you must be dispensed.
There have been a couple posts on this recently on here :
I have sent you a PM - there should be light above this post on the " chat " icon :
There are pharmacies in the UK who will dispense NDT on a private prescription which a endocrinologist or a doctor, for that matter, can write for you.
Some people go private initially and have a specialist monitor their progress but once you know what dose suits you best it's just a question of buying the medication.
I couldn't find anyone locally to help me and was too ill to travel far so DI for Myself.
There are internet sites where you can buy NDT, T3 and or T4 without a prescription and we share suppliers names by Private Message as we are not allowed to openly discus our safe and reliable sources on the forum.
Your Thyroid and How To Keep It Healthy written by a doctor who has hypothyroidism and takes NDT was my goto book. Barry Durrant-Peatfield writes in an easy to understand manner and is funny and insightful and though we don't now have this major gland, we do need to know all that it does so we can try and compensate accordingly.
You might also want to look up the late Dr John Lowe's work who was instrumental in the early days on this website and wrote extensively on optimum thyroid hormone replacement and the links and treatment to fibromyalgia symptoms.
The thyroid is the gland that is responsible for for full body synchronisation, including your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
Hi thanks again for your great reply, will get those books you recommend! Sorry but not sure if I went against my Endo and bought NDT privately he would carry on seeing me... so therefore wouldn’t know how much to take... can’t afford to pay privately for ongoing specialist advice... or when you buy it does it tell you how much to start in etc etc... or have I misread... sorry if I have! Feel brain dead lol
No, I just read up and DI 4myself - I 'm just on a single person state pension in a shared ownership house in rural Cornwall - so nothing much going on down and around me.
I was too ill to drive my little old car further afield :
I'd been refused by both surgeries in my catchment area and by the endocrinologist at the hospital.
I paid to see the Head of Endocrinology privately who told me it was impossible to write new prescriptions for either T3 or NDT in Cornwall at that point in time as we were in the firing line as the county with the highest numbers of prescriptions already and the dictate was to be reducing and switching existing T3 and NDT patients onto T4 because of financial constraints, though obviously packaged in a different way.
He suggested I go on the internet, buy it for myself and he would be happy to monitor me privately.
So, I tried again through the correct channels, but got nowhere and ended up doing what he told me the previous year TBH I was so brain fogged when I saw him, I didn't actually join up all these facts and the dots until quite recently as my memory has improved ten fold since switching to NDT.
I know of people on this forum who buy their own T3 or NDT and their NHS endocrinologist actively supports and helps and advises them.
I know of people on here who have a doctor who writes them a private prescription for either T3 or NDT.
If the oath " first do no harm " means anything at all, why are left like this ???
There seem to be very few in mainstream medical prepared to " take on " their CCG as ultimately I guess it a case of keeping up the mortgage payments or not.
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