Hi guys, just wondering if any of you lovely people could help with above.... long story... had total thyroidectomy 3 years ago for Cancer... been struggling more since... feel shocking most days...had other conditions before which seem to overlap... ME/CFS/Fibromyalgia/Severe Depression etc which have all got worse since the two operations!
Struggling with T4 tablets tried T3/T4 combo for 3 months but took off it in January as worse... Endo now advising GP to prescribe Liquid Levothyroxine after I suggested it ... might be just to get rid of me haha... just wondered Does anyone know if Mercury Pharma make this??? if not which brand have had better results with you lovely people... know we all different but out of all tablet T4 I’ve had Mercury’s been bit more tolerated...pharmacy been able to source it till now but says GP must state brand... but Dr saying Mercury not on list for tablets (so doubt if liquid will be ) Dr mentioned Advanz as one of brands she could prescribe... is this same as Mercury pharma does anyone know please?? Just incase need to go back to tablet form in future!
Also usually have bloods done every 4 months at hospital but been so unwell had tests done by Gp inbetween appointments in April... Only tested TSH which was 7.4 so told to gradually increase tablet Levothyroxine to 150.... Yesterday at my Endo appointment changed to liquid levo (as above ) but after asking why GP not tested T3/T4 like hospital do... he said it wasn’t important in my case.. said TSH is the only thing to watch said obviously pituitary gland working properly... asked him what acceptable tsh levels were for me... said basically under 2 (wanted to confirm as GP said 7.4 borderline)!! But told me stop worrying about what they should be just get them down and stop looking on internet and not to contact thyroid nurses (3 times in 3years) just contact him instead...thought was helping as to me consultants are like God... frightened to talk to any drs but this Endo frightens me to death, don’t like his attitude! Silly I know... my daughter says I’m too sensitive... just upset at constant struggling!
Sorry for long moan hope some of you knowledgeable people could advise about prescribing brands of Liquid levo in UK and if it’s just acceptable to concentrate on TSH not T4/T3 levels after having thyroid cancer/total thyroidectomy?
Thanks 🙏
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Blanche1960
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Thanks SlowDragon I read on here how important vitamins etc are so got tested few months back... folate was low so put on a 4 month course of folic acid which nearly finished! Took Vit D for a long time use the better you spray with K2 now . and magnesium tablet with added b vits ! Been tested for coeliac that was ok! Really struggle with levo don't seem to feel well on any dose... got it gradually down down from 200 but been on 125 or 150 for 18 months keeps changing up and down every 3/4 months after bloods... tolerate 125 tiny bit better than 150... tried inbetween doses and addingT3 for 3 months but no change! Trying liquid now just waiting for Gp to do prescription... Endo surprisingly said to start on 125 (taking 125/150 tablets on alternate days at mo) but I’ve asked for up to date bloods so if still under medicated think he will probably ring me to increase to 150, realise need to do this, hopefully this time might feel bit better fingers crossed!
Only 5% are coeliac, but over 80% find strictly gluten free helps or is absolutely essential
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.
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)
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.
Thanks again for your useful info... sorry if seen ignorant but I haven’t got Hashimoto... had thyroid removed due to cancer... is this still classed as auto immune... meaning will the gluten free diet still be better... think just answered my own question there... probably better all round with having problems tolerating T4 and short trial of T4/T3!
Thanks so much for this useful info.... sorry if I’m being stupid but al I right in thinking that Eltroxin and Levothyroxine are same product by Mercury pharma(Advanz) ?? Pharmacy said last week Eltroxin tablets cost too much so can’t order and can’t get normal Mercury pharma 25s so sent Teva which can’t tolerate! hopefully start on oral levo next week fingers crossed be ok on that!
Thank you for your valuable info... pharmacist said MP too expensive so wasn’t allowed to order it unless GP put brand on prescription... problem was Dr couldn’t find it on her list... but seems it’s listed as Advanz which you good people on here have advised!
My TSH raised to 8.29 in april up from a good 1.62 in December last. I must admit that I took fright at the pharma industry with what looked to me as a totally unwarranted premature push for CV19 vax. Totally disillusioned, I stopped all meds for about 6 - 7 weeks in late January. This might hav elevated my TSH. Only real symptoms was cold on fingers & hands & increase in headaches. Back on eltroxin again and await result of my next blood test in july. Five days @ 150 a day and 2 days at 200. Thankz to this site I take my vits in morning and eltroxin in late evening at least 2 hours after a meal. I hav lots of energy, constant walks hikes and cycling but the lockdown set me back a hell of a lot.
Thank you for your advice, sorry you’ve been through it too! I am thinking about changing time of taking levo from morning to late evening! My TSH levels rose up from 2 to 7.4 after first covid jab... but did start antidepressant fluoxetine day before so could have been that, was really unwelll ended up at A&E once after quite few attack’s of back/chest pain, high BP/pulse breathless/palpations etc..stopped Fluoxetine 5 wks later (which I need) and slowly increased Levo and started feeling better, no bad episodes but do feel unwell everyday, lots other stuff going off too though so hard to tell! Waiting for results see if Tsh gone down... fingers crossed! Frightened to start antidepressants again in case same happens... so sensitive to all meds, had second covid jab today so wait and see hopefully be ok! So glad you got back to doing things you love! Thanks again!
Well I refused the jab and hav no intention of taking it. The one thing that keeps me on my toes is exercise & a good nights sleep. The government lockdown policy made no sense to me & still has me totally delusioned.
I have been on Mercury Pharma Levothyroxine for about three years. If the pharmacy provides something from another manufacturer (Accord) I start to feel really rough. My pharmacy has been instructed by my GP to only supply Mercury Pharma Levothyroxine. No problems with supply, so far.
I believe there are liquid versions of T3 - Liothyronine as well :
Since you have lost your thyroid and your own T3 production maybe this needs to be factored in and considered in due course ?
No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are maintained at optimal levels and this is an area you may well need to build up yourself as you maybe in the NHS ranges but not at a high enough level to equip your body to utilise effectively the hormone replacement.
There are liquid liothyronine products - but not available in the UK.
The only one that springs to mind is Liotir which is available in Italy. It contains ethanol (alcohol) and might not suit everyone for that reason alone.
Most of the other liquid liothyronine products I have noticed have been labelled "for research" or use some other way of ducking the regulations regarding human medicines.
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GP not prepared to prescribe a brand of T3
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