Well I'm self isolateing but before this virus thingy started I was going to see my endo as my gp has said I'm either not converting or absorbing the levo.. My T3 was on the floor he did say I could try liquid levo but seeing as the endo was going to try me on T3 he need not prescribe the liquid levo... Well all that's gone out the window 🙄 I was due to have my thiyroid bloods done about now but just received an e-mail from my surgery telling me to make an appointment in 5 weeks for the bloods so that's been knocked back to.. I'm really considering not taking the levo as I feel so ill if it's not working for me how is my body coping with not having the right hormones in my system 😞😞😞
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birkie
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I'm taking the mouth spray vitamin D.. But have not managed to get the others I get free prescriptions I paid for my vitamin D I'm now told I need to self isolate due to ongoing illnesses and thyroid problems so can't go out😩 but I'm sure the levo isnt doing much for me Im not good on synthetic meds.. I have just received my latest meds which were delivered but no Eltroxin in the bag when I rang I was told they didn't have any in they would probably be in tomorrow so they will try to deliver them then I've none left now and don't really want to take them anyway... I will ring my surgery and ask about the liquid levo.. But I'm not holding my breath as we have been told not to put pressure on the surgery at this time..
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Full dose is two per day ....but most people only need one per day. Suggest starting with just a half a tablet per day for week or so.....then increase to one per day
Igennus are good quality and pretty cheap at £9.99
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
I have started to add some meat and I've been eating liver pate on my ryvitas I love Brussels sprouts and broccoli although their the frozen ones I found the fresh don't last and I was waisting money I steam the frozen ones.. Its very hard at the minute because I can't get a delivery slot at any supermarket and I've not had any post for over 4 days so are amazon still posting out goods?? If my levos not working for me I'm just going to get worse as I have been since my TT... Rang surgery to try to get liquid levo but no answer their.. I'll try again tomorrow 😒😒
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients.
Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
I did up the dose to 75mg on endos recommendation still have bad symptoms with it in guts/stomach then bloods showed my TSH had dropped from 3.76 I think it was this.. To 1.6 so gp told me to reduce back down to 50gm.. But I didn't I've remained on 75mg I'm so sick of this game of tennis with meds and he only did TSH not T3 or T4 that made me so mad... And now my bloods have been deferd for another 5 weeks.. No answer at my surgery I'll have to try tomorrow to see about the liquid levo... I'm constantly in bed I feel like I did when I had hyperthyroidism just going to put the kettle on is like running the marathon.. 😢😢
After thyroidectomy and previously being hyperthyroid TSH is especially unreliable
TSH frequently drops well under one when adequately treated......the ONLY relevant tests are Ft3 and Ft4
Absolutely refuse to change dose based solely on just TSH
ALWAYS get thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Essential to get all four vitamins optimal
Vitamin D at least around 80nmol and around 100nmol may be better
B12 at least over 500
Folate at least over 10
Ferritin at least half way through range
When on levothyroxine we frequently BECOME gluten intolerant. Always worth trying gluten free diet
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
My last T3 T4 were very low but my TSH was high.. I don't know what my T3 T4 are now that my TSH has dropped down to 1.6 from 3.76 I think it was this.. My gp only did the TSH test.. I'm trying to see if I can get on liquid levo trying my surgery tomorrow 👍
After thyroidectomy the most important results are Ft4 and Ft3
Just testing TSH is completely inadequate
Many many people only recover when Ft3 is at least 60-70%through range. This often means Ft4 needs to be right at very top of range...or even above top of range ....
This frequently results in completely suppressed TSH ...but it’s irrelevant
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal “
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Guidelines on dose levothyroxine by weight is
1.6mcg levothyroxine per kilo of your weight
Weigh yourself in kg.
Eg
10 stone = 63kg x 1.6 = 100mcg levothyroxine per day
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Sorry for the butt in before❤️ to b honest im so down at the moment and lost. My last bloods done in Nov showed a very low T3 and a low T4 TSH high... I've been trying to get my normal gp I see to help me with this but he says I should just continue with the Eltroxin... I made an appointment with another gp he looked at my results and said I think your not converting it could be due to your colitis he referd me back to my endo and recommend he tries me on T3 I felt relief at that moment which disappeared when my appointment was cancelled.. I begged my new gp to let me try liquid levo but he said he needn't to do that as I was seeing the endo😩 anyway as that's not going to happen I rang up 3 days ago about the liquid levo I've just got an email saying its in my chemist I don't know if this will work but I will defo be giving it a try.. Can I ask you what does a low T3 and T4 mean with a high TSH... Because I'm getting nowhere with my GPS... I feel like I'm hyper then hypo do you think these T3 T4 results are why I feel so bad..
I would say I'm about 10 and a half stone now put loads of weight on 😩 I've been on 75mg Eltroxin tablets for well over 7 weeks now I feel no diffrent just ill.. Gp also said I might not be absorbing due to colitis but thought it was poor conversion but as you say that would require my T3 T4 to be high(hope I've got that right) I'm getting the liquid levo delivered today.. I think your right about upping my dose would it be OK if I start on 75mg which I've been taking then move up to 100gm in 2 weeks...
Yes...it’s likely (hopeful) that liquid levothyroxine is better absorbed so, in effect, you may get small increase on liquid levothyroxine
Ideally would waiting 6 weeks and get FULL thyroid and vitamin testing ...that might tie in with next test via GP
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
Remember to stop taking vitamin B complex a week before any blood tests as biotin in vitamin B complex can falsely affect test results
So when we are very hypo, your body over compensates by making lots of adrenaline...so Can make you feel wired and anxious ...plus depression is extremely common symptom
Are you trying to be on strictly gluten free diet too, this can help improve gut symptoms and improve absorption of levothyroxine
To be quite honest I've not been very hungry and are just eating ryvita tuna strawberry moosese. And I'm shocked at how much weight I've gained.. I am looking in to gluten free when I have an apitite I sitck to chicken and veg with rice I don't eat red meat but have started putting a bit of pate on my ryvita and added some orange juice to... 👌
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