Hello everyone!
Finally got full testing including vitamins done. Results below. I think everything is ok with vitamins etc?
Whats confusing me is the thyroid results. Higher TSH this time, but better results for my T4/T3. What is going on with this thyroid of mine??
I have an appointment booked at the Thyroid Clinic in 6 weeks, would it be worth doing any further thyroid testing nearer the time to get a better picture?
Results above actually - oops!
Hello Weedee :
Just reading your first post - how did your Graves resolve itself -
this is an multi organ Auto Immune Disease for which there is no cure -
were you on Anti Thyroid drugs - Carbimazole or Propylthiouracil - PTU - and you found remission ?
Hi pennyannie,
I was on a low dose of carbimazole for around 18 months, then I was fine but was told thats common with post partum thyroid issues.
On my previous post it was mentioned it could have actually been Hashi's as that tends to be overactive then swing the other way. Many of my symptoms now are the same. Except this time I am shattered and its weight gain instead of weight loss. I'm just getting confused with these results as it tends to be high TSH and low T4/T3. The thyroid is a strange wee thing!
Ok then - so it appears you may not have had Graves in the first place and the Graves antibody blood test never confirmed as a positive.
So yes, with Hashimoto's you will be experiencing ' swings in symptoms ' but these do not rise higher and higher as in Graves and your T3 and T4 fall back down into range by themselves after the immune system attack on your thyroid is over.
However - with this AI disease your thyroid - over time - is systematically destroyed and you will find your thyroid further disabled with you needing more thyroid hormone replacement support.
How are you feeling - as blood tests are just a snapshot in time and tend to run a couple of weeks behind symptoms being tolerated ?
Your CRP - inflammation is high - suggesting your body struggling :
Both sets of antibodies are over range indicative of a recent attack from your immune system -
and likely why your TSH + T3 and T4 ' look ' as they do - as it would seem you have or are just getting over another AI attack and a ' swing ' in symptoms and blood tests levels -
I read that some people sense these swings coming on - and drop their thyroid medication for a few days so to try and offset the worst of the symptoms being tolerated ?
Many forum members follow the research and suggestions of Dr Izabella Wentz useful as she too has this thyroid AI disease and writes as thyroidpharmacist.com
P.S. your vitamins and minerals look ok - vitamin D could be better over 100 :
Have your thyroid medications been changed recently- what meds are you taking - as this might be a contributing factor ?
Yeah I've been reading lots the last few weeks, I'm already low gluten/dairy, lots of antiflammatory foods (my inflammation is down from 12 just over a year ago). Read that book but I absolutely cannot give up my coffee or odd sweet treat, gave up my wine so got to have some joy in life 😂
On my last post it was mentioned my low TSH didn't really go with low lower T4, so thats why I'm now confised again. I was expecting a low TSH /higher T4 or high TSH/low T4.
Does it look like i need to supplement anything? I bought a B complex including folate, would this still be beneficial?
And just to add to the utter madness, went for my GP tests this morning (wanted full iron Panel on top of these and for them to be on record). No thyroid test request!! Not even a mention about thyroid on my record even after three telephone appointments and me specifically asking.
OK - I think the fact that you were thought to have Graves and put on an AT drug for 18 months will have down regulated your thyroid function anyway.
The TSH once on any form of thyroid medication whether it be AT drugs or thyroid hormone replacement the least important reading and the TSH originally introduced as a diagnostic tool to help identify those dealing with hypothyroidism and once on any form of thyroid hormone medication - the TSH a very unreliable measure of anything.
I know this probably flies in the face of what happens in mainstream medical especially in primary care where it seems a TSH is now the gold standard treatment and tells the doctor everything he needs to know about your thyroid function and who then offers you anti depressants as the solution ???
Once on medication we must be dosed and monitored of the Free T3 and Free T4 readings and generally speaking -
if on T4 monotherapy - we generally feel best with a T4 in the top quadrant at around 80% with T3 tracking just behind at around 60/70% through its range.
If tracking progress and on a T3/T4 combo or Natural Desiccated Thyroid - we need to interpret the blood tests differently :
The carbimazole was 15 years ago, so doubt that's having any impact now on any of my levels. And not on any meds at all, so to be honest a high TSH would go in my favour - but, knowing what members told me last time the actual hormones seem ok from a Mondays test. That's the only part I am really confused by just now 😕
Hopefully one of the Hashi experts will jump on soon, guess just now I want to be sure supplements wise i know what I'm doing and everything is as optimal as possible. Seems like a neverending world of confusion with this, I'm hoping it all makes sense soon.
All I am saying is that if ' with Graves ' your TSH is a very unreliable measure of anything - whether it be 15 years ago or not as Graves is a life long health issue and carries both Blocking and Stimulating antibodies -
Yes a high TSH should stand you in good stead for a dose increase in meds - if on meds - and this just goes to show how unreliable a TSH reading can be - when seen in isolation as what happens in primary care -
your T3 and T4 tell a very different story - and with inverted results - meaning your thyroid is struggling - with your T4 at around 57% with your T3 at around 86% through the ranges - and why I 've been asking you about your symptoms - and
Could you be coming down from a Hashimoto's ' swing ' ?
OK - let's leave this here :
Are you currently taking any levothyroxine
If yes how much and which brand
Was test done as recommended, early morning, before 9am and only drinking water between waking and test…..last dose levothyroxine 24 hours before test
Gluten free does need to be absolutely GF to be effective
Hi slowdragon,
Not on any meds at all, have an initial appointment with Thyroid clinic end of August as getting nowhere with own GP.
Test was 8am, fasted beforehand. My previous test results were in afternoon hence the retesting, I've added those to my profile for info.
I was taking various supplements but stopped those before tests as i was pretty much playing a guessing game with everything. Seems like my levels are pretty decent? Was thinking of starting with the Thorne Basic B that was recommended. Would that do any harm? I am getting a full iron panel done by GP but ferritin also seems ok from reading other posts on here too.
My diet is very good, have been checked for coaliac (no idea how you spell it!) and negative, so low gluten made a huge difference. That was about 6 years ago due to ibs symptoms. I only break it for the odd biccy! I stick to rice, lentils or gluten free options for pasta etc.
I know I'm on the right track booking a consultation with the clinic, I'm just confused as i would have thought with a TSH that level, my frees would have been lower?
How far have you got with your GP so far?
The reason I ask is because if you start treatment with a private clinic, your GP may always question and not necessarily accept the diagnosis of the private clinic, and in the future may try and get you to stop treatment. Obviously its best to try and avoid this scenario and if you possibly can get an NHS diagnosis then thats the best way to go.
I'd recommend showing your GP these results with above range TSH & positive antibodies and ask if they will test you on the NHS. Test as per the protocol of 9am or earlier & fasting for highest TSH.
You need 2 TSH results 3 months apart above range to get diagnosed on the NHS.
My current GP practice is shockingly bad. I have spoke to three Drs and nothing. I specifically requested an early morning thyroid (mainly so it was on my record) and the GP didn't even request it. Thankfully the nurse today added it on so thats a start for my nhs record
However i have spoke to three GPs now and they were not interested. Probably why they didnt request. I'll be moving practices in the next few weeks anyway as i recently moved, but i need to get it sorted asap. My memory and brain fog are so bad I am really struggling to work (i do large volumes of data analysis and reporting - not a great match). Hoping a new surgery will be a bit more open minded.
Thats helpful to know, so nhs wise they wont do anything until the two tests even with higher TSH and antibodies? I still feel a bit like a fraud as i know there are people out there struggling a lot more than me, but I just want to get back out my longs walks and maybe stay up past 9pm the odd night!
Any advice on the supplement front? Would the B vitamins help?
You now have 2 Medichecks blood tests showing over range thyroid antibodies - though just a month apart -
some doctors within the NHS system will act on this information -
they are not obliged to accept private blood tests but it should force their hand to run their own NHS blood tests and commence treating you with T4 levothyroxine -
maybe ask to see the surgery Practice manager - if push comes to shove.
Generally speaking they wont accept private blood results with the exception of Monitor My Health which is an NHS lab. Its worth showing them the test results though as it should prompt them to run their own tests.
The NHS take little notice of antibodies although obviously it is an indication of a problem. It doesnt count much as far as getting a diagnosis goes but could raise their interest level.
There are no hard and fast rules as far as when a GP will start you on treatment. Its often an individual thing, some GPs are sticklers for waiting until TSH reaches 10 but other GPs, if you have symptoms, antibodies & raised TSH might start you on treatment. Very much luck of the draw.
Most people begin treatment after the 2 raised TSH results 3 months apart (must be NHS tests) but some GPs need this criteria pointing out to them.
The B vitamins will definitely help but take a few months to work well.
You seem to be supplementing already and have good levels of B12, folate, D3 & ferritin.
I definitely need a new GP, I try not to bother them much anyway but they really have let me down when I have needed them so i know i won't get anywhere with them with this. But will definitely be gathering up all my info for the new practice I join. To be honest that's the only reason I really pushed for at least the basic thyroid test so I have a starting point with the new one. I was using a perimenopause supplement previously which did have B12, as well as a high dosage vitamin D. So going to try the B complex recommended as it looks around the same dosage. Was actually expecting my ferritin to below with the way I've been feeling, and strangely was hoping it would have been a 'quick fix'. But I am glad the lifestyle changes I made for arthritis have obviously made a big difference.
I'll have a look at those guidelines just now, that is really helpful so thank you
My latest test results, dont understand what is going on :(
Test Results - Underactive Thyroid
Test results 
