Hi sorry I haven't been on for a while but to be honest I have been feeling pretty rubbish, in my last post I was going to see a different endocrinology at a different hospital hoping to get some progress. The first appointment was great and gave me a positive outcome until I went back the second time and was very disappointed
My first appointment I'd wrote down all my symptoms which was everyone that comes with hypothyroidism I told him my history because all he had was the paperwork I had taken no previous hospital note only what was sent to me.
He seamed to listen to me or so I thought 💀 He told me I can't have graves diseases
that if I had Graves Diseases I wouldn't of been given the radio active iodine???
second he said that my vitamin D was low and that I wasn't absorbing what I was taking and that a lot of my symptoms was down to vitamin D deficiency ( of hand my vitamin d was 41) wants at 85
9 am followed protocol (old endocrinology
125 ml 4 days a week 150 ml 3 days a week
TSH 0.41 mIU/L (0.3 - 5.5) 2.1%
Free T4 (fT4) 19.9 pmol/L (12.0 - 22.0) 79.0%
Free T3 (fT3) 4.4 pmol/L (3.1 - 6.8) 35.1%
third he said I was going from under active to over active
I couldn't have problems with my cortisol or it would show in my blood pressure
He also said he likes to get patients thyroid levels stable at least 3 separate blood tests over a period of 9 months before hes happy????
I thought this sounds to good to be true
He dropped my levothyroxine 25ml
did blood test
3.30 medication & food ( would take no for answer ( so cant go by these results )
125 ml 4 days a week 150 ml 3 days a week
TSH* 0.17 mIU/L (0.3 - 4.2)
Free T4 22.0 pmol/L (10.0 - 22.0)
Free T3 4.7 pmol/L (3.1 - 6.8)
Thyroid Peroxidase abs (Roche) 9.77 KU/L (≤ 34.0)
Vitamin D 41.0 nmol/L (50.0 - 144.0)
Thyroid receptor abs * 17.2 IU/L 0-0.9
since drop tablets from 125 ml 4 days a week 150 ml 3 days a week to 125 ml 5 days a week 150 ml 2 days a week all my usual symptoms plus these are worse
cold all the time, heart palpitations, headaches brain fog chronic fatigue ,trembling inside
Can anyone give me some advice I've had a message today to contact doctors for appointment but they haven't got 1 doctor that knows anything about thyroids
And they referring me to chronic fatigue syndrome Clinic ?????
Written by
Tinyowl99
To view profiles and participate in discussions please or .
He sounds a bit of a twit but the advice about Vit D is valid, yours is awful and could impair conversion, no folate, B12 or ferritin results? All need to be optimised
Need to take a D3 with K2, essential for bone health and you are aiming for 100-150nmol/L, magnesium also helps with uptake
You could do with a good loading dose and then switch to maintenance, use this to work out the dose needed... grassrootshealth.net/projec...
The horrible vibrations were a sign my adrenals were struggling so be sure to tkae a decent amount of Vit C and salt to help them as they are trying hard to keep things functioning
A very big twit lol I've been taking better for you vitamin D & K2 I've been taking 5 sprays more than it says just to try and get level up
I don't have recent folate, B12 or ferritin results only from I think it was July last year I honestly cannot function I feel so bad freezing cold to the bone
something I haven't been taking is vitamin C
thank you I will take a look
I take vitamin D better for you
magnesium selenium vitamin B complex & better for you iron spray B12 drops
some day I feel worse and wondered if it was the vitamins but its not its defiantly the levothyroxine I've felt like this on & off since starting it never gets better just mild or off the scales never in between thank you
I had increase dose last year but as soon as I finished the 4 month course the doctors didn't bother to see how it was so I started back on the better for you one which I had seen on page that's good for poor gut absorption I will keep retesting and working to get bet results
Hi TiggerMe Just looked on link that's brilliant ive screen shot amount it tells me to take how much vitamin c do you needed to take its something I haven't thought about before thank you so much
Thank you I will order some now I'm at my wits end because I know doctor will just reduce t4 medication again and I already got trembling inside and bad palpitations
I only take Accord levothyroxine I have 100mcg & 50mcg which I have to split the 50mcg
I have bad allergic reactions to a lot of medication
I cant say these suit me but I'm tolerating them better than the others I've tried
what ever dose I have been on doesn't improve how I feel still feel crap but never been cold like this before sat wearing gloves in front of log burner and still freezing cold
Hi Delilahmy had my b12 check August last year which was 582 ng /L [197- 771] my t3 is 4.1 pmol/L [3.1- 6.8] the trouble is doctors keep saying they normal but they not when I check on what others say there levels are sick of feeling so shitty and made to feel like I'm making it all up thank you over two years and just feeling worse I just can't function x
Looking at these blood tests from whatever time of day - the fact is you have had RAI thyroid ablation and lost your own thyroid hormone production which will have been -
on a daily basis -
trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -
with T3 being around 4 x more powerful than T4 :
You are running with too low a level of T3 to function well and to some degree the more you try, the worse the situation becomes as your symptoms of hypothyroidism increase and become debilitating.
First you need to put those running shoes on the shelf for a while and consider walking or swimming with neither becoming obsessive and work on repairing your body and building back up your core strength vitamins and minerals -
as no thyroid hormone works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - I now aim to maintain ferritin at 100 - folate around 20 - actibe B12 around 125 ( serum B23 500++ ) and vitamin D up at around 125.
Some people can get on T4 monotherapy.
Others find that at some point in time T4 alnes seems not to work as well as it did and find by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - they feel better and their T3/T4 hormonal balance is restored.
Some find they can't tolerate T4 and need to take T3 only - Liothyronine - as you can without T4 but you can't live without T3 :
Others find their health restored taking Natural Desiccated Thyroid which is the original successfully used treatment for hypothyroidism for over 100 years and derived from pig thyroids, dried and ground down into a powder, medically graded, and made up into tablets or capsules as needed and with each dose containing all the same known hormones as that of the human thyroid gland that you have lost by having had RAI thyroid ablation.
I think I've written all this before so apologies if I'm that broken record.
Currently the NHS in primary care only prescribed T4 and you need to be referred to endocrinology if T4 alone does not resolve your symptoms of hypothyroidism
Currently NHS guidelines, hospital rules and ICB/CCG regulations may mean that T3 is black listed in your are of the country - and no matter how ill you are, you will not be acknowledged as medical professionals are somewhat constrained by the financial restrictionsin place.
Obviously if you ca afford to go private all 3 treatment options are available or if not the case you self source, buy your own and DIYourself - as I have done.
Have you checked to see the rules in place in your ICB area -
You can check your surgery and see if they prescribing T3 / NDT -
just go into openprescribing.net and see by surgeries in your area how supportive your surgery is in prescribing the other treatment options -
and for drug - type in Armour for the NDT ( leading brand ) - and for T3 type in Liothyronine.
P.S. The TRab reading is high but has no bearing on how you should be treated -
Graves is an Auto Immune Disease and antibodies can wax and wane throughout ones life and generally associated with life ' triggers ' and commonly linked to one's stress and anxiety .
You have had RAI thyroid ablation and your own thyroid function been totally disabled -
You are now Primary Hypothyroid, with no thyroid function of your own and totally reliant on taking thyroid hormones and would likely do better - trying to replicate the same known hormones as those that nature provided you with on a daily basis.
Hi thank you yes I checked to see the rules in place in my ICB area and my doctors do supply it but they want prescribe it me all they say is they don't know what they doing with thyroids and say it would have to be endocrinology consultant that would prescribe it old endocrinology wouldn't said I didn't need it and that i had little men in my head and to think positive and i would feel better total arse and the new one recons it my vitamin D and if no better after 3 months I need referral to chronic fatigue syndrome clinic I know they prescribe it because I've look and my old doctor that left was going to prescribe it me but left before I got back to see him Do I need to reduce my t4 as when I go back to doctors they won't know what to do I know I've got to work to get all my vitamins up don't know if I haven't been taken enough but I have been taking them for last 7months or longer
The rules now are that you need a referral to endocrinology to be assessed as to your need for T3 - and if an endo deems you need T3 - a hospital trial is commenced and if successful your prescription for T3 is eventually picked up by your primary care doctor.
The doctor will just reduce my t4 medication because they saying my t4 and t3 are in range and that my tsh is to low and that's all they go on so they will reduce even more which just makes me worse they just twits
Yes I know and the same happened to me and I was made very unwell and now why I Do It for Myself -
I gave a copy of this link below to my doctor and endocrinologist and was totally ignored and then all my other research and other papers were lost - though I handed them into the receptionist myself.
You might find this link helpful -
Professor A Toft's - Thyroid Hormone Replacement - A Counterblast to Guidelines -
a now retired, leading endocrinologist who had a world wide influence -
If with the horrible brain fog - go to Page 3 and read the first couple of paragraphs referring to how difficult it is treating patients after ingesting the RAI toxic substance -
Thank you I will take a look at these the trouble is I don't know where to start to look for self medication I think I would like to try the ndt my brain fog is so bad if my husband didn't understand how I am he would think I got dementia 🤯
Lol we have to laugh or we would cry we start to think to ourself what's happening I couldn't of done that yes definitely a wakeup call do you take t4 & t3 medication or do you take ndt and Is there a easy way to find it are you in uk
Yes I'm with some sort of PTSD with it all and just get anxious thinking of my life back then - anyway - a PM is a Private Message and your Chat icon that looks like a paper plane should have lit up as this screen is a one to one - with no Admin over ride - as we are not allowed to openly discuss where to self source medications.
Had it only been my kettle that I lost - rather than around a dozen teeth - maybe i wouldn't feel as sensitive as I still do - but it's more anger at this ' health care ' system awe presume we have until you have a problem - and then just go round in a loop like a broken record with no one listening.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
NEW BLOOD TEST RESULTS NEED HELP GOING ONTO T3 T4 COMBO
Blood results within range. Is this a problem?
are these test results ok
Help interpreting blood results?
Please help with blood test results
