I’ve received my results from medi checks and was looking for someone to advise please.
Symptoms are as follows
Severe Low moods/depression,Irritability,Insomnia,Fatigue,Lethargy,Aching muscles/bones,I can’t decide which🤷♀️Severe sensitivity to the cold,Constipation,Emotional,Loss of strength.I’ve been off work since December as this has really taken its toll on me,I can usually work through these episodes but I don’t think I’ve done myself any favours by doing that,which is why I’m probably in the state I am now.
I’m still waiting on biopsy results from November to rule out coeliac disease.
I was recently diagnosed with Adenomyosis and cysts on my ovaries and breasts.
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PrincessAnnie
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so are you previously 'overactive' (Graves?) , then had RAI ?
is that right?
Now hypothyroid and taking Levo .
What dose and for how long ?
It helps to keep replies relevant if we can see all the History .
You TPOab are raised which usually indicates hashimoto's as the cause of hypothyroidism. but some people with Graves also have some TPOab .
Those results do look like you might benefit from trying a bit less Levo and adding a bit of T3 instead.
But a levo increase is probably worth a try first. it's a lot less hassle.
You may have difficulty getting a levo increase from GP because the Ft4 is high in range even though according to the TSH it seems you could definitely do with some more thyroid hormone .
If they say you can't have an increase in Levo dose because your T4 is already high ... show them this below range fT3 result and say you want referring to an endocrinologist for a trial trial of T3 treatment.... that suggestion will probably make them MUCH keener to offer you a Levo increase first .
Sorry,yes I was over active and the radio iodine made me go under,I was told at a scan that it nearly destroyed all my thyroid.I was never told I had graves,just that I had an over active thyroid and that the radio iodine was the best treatment,I did have positive antibodies when I was first diagnosed,but I only found this out last year when I enquired about having anti bodies tested.
I take 75mg one day and 100mg the next and alternate.
I was going to suggest upping my dose to the gp first to see if that helped,as I know it’s such a struggle to get T3.
Do you think it maybe worth trying the liquid form of Levothyroxine?
i don't know if the liquid form would be any help.. it doesn't seem like you have any difficulty absorbing the T4 from tablets .. there is clearly plenty of T4 in your body .. it's just not turning into T3 very efficiently.
and the liquid is also very expensive ,, so they are not going to be too keen on offering that either. and i think it also requires some sort of sign off due to cost.. i don't think GP's can just do it without putting a case forward first... but i could be wrong about that .
If it was Graves you had , then the antibodies that would have confirmed it are called TRab (Thyroid stimulating hormone Receptor antibodies) ..
they are different ones to TPOab (Thyroid Peroxidase antibodies)
I would imagine you do have a pretty good 'NHS' case for trying some T3 when /if you get to see an endocrinologist:
1) You effectively have no thyroid left due to RAI,
2) and your fT3 is actually below range ,
3) and your TSH is not too low already so they can't say you are overmedicated ,
4) but they won't really want to give you much more Levo to fix the highish TSH ,because your fT4 is already so high.
5) so that just leaves "let's try some T3".. hopefully .
I’m waiting on a copy of my health records to see exactly what it says when I was first diagnosed,the endocrinologist I had wasn’t very good.
I had an appointment last year with him but it got cancelled due to covid so the doctor was going to check if I was still on the system,but there’s a big back log now😤I’m going to see if occupational health at my work can speed things up for me.
This is the medication I take,I do believe it’s two different kinds,I’ve actually never noticed that before.
I take 2000iu a day in vitamin d.
My test was at 9.15 as it was the earliest appointment I could get with a nurse,I opted for this to ensure a folate reading,I never took my meds until afterwards.
I had bloods done last Friday with the GP but I don’t know what for,I got a letter yesterday to say I’ve to make another appointment for bloods in four weeks,I won’t know what for until Monday when I phone them,I’m hoping to pick a copy of the bloods up after 4 today.
I was going to suggest an increase in dose to them,if they refuse me I’m just going to tell them I’m doing it anyway as I have a right to try and get my range under 2 to see if it helps my symptoms.
Primary hypothyroidism caused by ingesting RAI is said to be more difficult to treat :
RAI is a slow burn and whatever bit they thought might function, will ultimately be destroyed by the RAI and for all sense and purpose your thyroid is now totally disabled.
RAI is known to trash vitamins and minerals and we need optimal vitamins and minerals for thyroid hormone replacement to work well.
It is essential that you are dosed on your T3 and T4 blood test results and not a TSH, though I am well aware, as I too fell foul, of believing the yearly thyroid function test was the gold standard and I was being well cared for,
We generally feel at our best when our T4 is in the top quadrant of the range as this should in theory convert to a good level of T3 - at roughly a 1/4 ratio T3 / T4. and it is the level of T3 that gives you back your wellness.
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 with most people feeling at their best at around 4 or under ;
So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at around 6.68 so wide from centre showing very poor conversion.
Your T4 is coming in at just under 80% through but your T3 isn't even in the range and you must be feeling pretty horrible.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100mcg.
T3 - Liothyronine is said to be around 4 times more powerful than T4 and I would think a referral to endocrinology to at least get prescribed some T3 - just to replace your own lost thyroid hormone a logical next best step - so to quick start your metabolism of the T4.
When I started my research on ferritin everywhere was saying ferritin needs to be over 70 for thyroid hormone to work well : I then found this forum and started to mend myself.
I now maintain my ferritin at around 100: folate at around 20: active B12 at around 75 ++ and vitamin D at around 100;
Some people can get by on T4 only :
Some people need the addition of a little T3 to replace that lost by RAI thyroid ablation:
Some people can't tolerate T4 and take T3 only ;
Whist other people feel better on Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland.
Twenty odd years ago all these options were available on prescription from your doctor.
Nowadays doctors can only prescribe T4 and you need to be referred to an endocrinologist if you wish/need an alternative thyroid hormone replacement option.
Thyroid UK hold a list a sympathetic endos and specialists to be referred to as it's not a done deal, as depending on where you live in the country certain CCGs are not following guidelines and prescriptions of T3 have become a post code lottery.
I am Graves and post RAI thyroid ablation in 2005 and became very unwell around 8 years later : Having been refused anything except T4 and anti depressants I now self medicate and am much improved taking NDT and now just arrange a yearly private blood test, more to see where my vitamins and minerals sit than anything else.
I think I've already sent the following link to you but can't remember any conversations so :
No worries - you results so obviously show such a wide disparity between T3 and T4 and with a T3 under range you should stand a better chance of getting help than someone like myself.
My TSH was stuck down at 0.01 which is common in Graves, and why a TSH is not a reliable measure on anything, and I was constantly told to reduce my dose though my T3 was at just 25% through, and I was in a constant circle of worsening symptoms.
Sending a hug or seven - yes - we have all been there in some shape or form and why I'm here now giving back to enable other people to take their steps back to better health.
No, I found my symptoms exacerbated dealing with the medical mainstream and after reading a couple of books, whilst housebound, which I think i gave you on a previous post I did it for myself once I felt confident to do so and my vitamins and minerals were optimal.
seems not ..... most comments i've seen on private bloods that people let us see on here are written as though the Doctor doesn't know any history .. so i've always assumed they didn't know .. but if they do know , but just don't bother to read them..... ...... why am i not surprised ... hey ho .
Sorry I couldn’t get a really good picture.He commented,your thyroid shows that your free T3 is slightly low however your Tsh and thyroxine are normal which suggests a healthy thyroid function🙄the low T3 is likely to be a transient finding and not a cause for concern.Very occasionally it can be an early sign of developing under active thyroid.
your thyroid shows that your free T3 is slightly low however your Tsh and thyroxine are normal which suggests a healthy thyroid function🙄the low T3 is likely to be a transient finding and not a cause for concern.Very occasionally it can be an early sign of developing under active thyroid.
That’s such an appallingly inaccurate and incorrect comment
Personally I would email and complain
They should have read your medical notes that you have no thyroid and are on replacement thyroid hormones
In future it’s not worth waiting extra time for what are far too frequently useless doctors comments
I know that’s exactly what I thought🙄I forgot I had added doctors notes as it was already in my basket when I ordered it,I won’t be getting them again.I’ll actually do that,I never thought to complain.
I think it wise to go the NHS route first as no one really wants to have to self medicate if there's another option to be explored first.
Searching the internet for a reliable supplier is one thing and throughout Covid suppliers of NDT were disappearing on a regular basis , sometimes with peoples payments for stock that never arrived and several brands of NDT also disappeared.
Yes I will be,it was just something to think about for the future should I get no help,as we know it’s not guaranteed.
I was looking at private gps and there’s one I’ve emailed for further advice,she prescribes it but how would I go about getting it🤷♀️Would a chemist even stick it?
Several private endocrinologist are still doing consultations on zoom….so distance no object
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
tukadmin@thyroiduk.org
Initial private consultation is around £250
Follow cheaper…..£150 approx
And then an annual review
Private prescription enables access to Thybon Henning 20mcg tablets T3 at 50p per tablet
Typical starting dose is 2 x 5mcg (cutting 20mcg tablets into 1/4’s)
After 6-8 weeks and blood retest ….you might need small increase in T3 to 3 x 5mcg per day or possibly 20mcg in total
Obviously an annual full thyroid and vitamin test privately too
You might then be able to transfer across to getting T3 on NHS
(NHS currently paying £70 per 28 tablets, but price has dropped from £268 - price gouging caused T3 to not be offered other than in very limited numbers )
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