I wasn’t holding my breath for any kind of miracle with the endo at my appointment today!
He says my blood work suggests my miserable list of symptoms aren’t related to my thyroid (raised Tgab found 4 years ago).
Last lab results..
T4 12.4 12-22
T3 4.16 3.1-6.8
TSH 0.553 0.27-4.2
Any advice on what to do now.... I feel a little deflated! X
T4 is low. What medication are you on?
The problem is, the majority of doctors - endo included - know nothing about symptoms. So, his opinion on that subject counts for very little. They believe that the TSH tells them all they need to know, and as long as the Frees are in range, there's nothing wrong with you.
Your FT4 is right at the bottom of the range, so it probably won't be long before it drops off the bottom, and then you'll have something to argue with.
Just how raised were your Tg antibodies? They can be slightly raised for many reasons. But, if they were very high, then you have Hashi's.
Hi
I totally agree with you, it’s like banging your head and you just know they are talking utter garbage!
My tpo antibodies were not raised but my tgab were at 227 the range being up to 115 I think .
I’m at rock bottom and have had to give up work, I’m barely making it through the day and literally “feel ill”! However chocolate is helping at the moment 😬
Have you considered self-treating?
Yes it’s crossed my mind several times and I’ve looked at posts on here regarding it.
Is it acceptable on here to ask for advice on how start ?
We can discuss how to start, yes, but cannot give names of or links to suppliers on the open forum. For that you need to ask people to send you a PM.
Before going any further, it would be advisable to get full thyroid testing privately - they won't do it on the NHS:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit d
vit B12
folate
ferritin
Then people will be better able to advise you. 
Your lab numbers are not much different from mine and I'm without a thyroid and taking 100mcg synthyroid and 10mcg cytomel.
That Endo is only looking at the TSH sadly this seems to be the norm and all the crazy things your going through is all unrelated. I heard this a million times since losing my thyroid, your fatigued it's sleep apnea, your hair is falling out it's old age, your joints hurt your too active or not active enough, your gaining weight your eating too much or all your problems exist because your a women and menopausal...this one is a beauty of a diagnoises.
It's crazy how many reasons they can give you for feeling unwell, it's a wonder how anyone get proper medical treatment.
So, have you got other conditions? Has the GP ruled out other autoimmune conditions that could be related to TgAb? I would ask the GP what he/she thinks is causing low FT4 along with low TSH as its rather unusual. It's possible that another autoimmune conditionay be interfering with thyroid hormones. Perhaps they could do some further tests to rule that out?
Hi
He doesn’t consider any of my results to be “low” they are normal! Because they are in range! I could scream 😱
They’ve made no suggestions on other autoimmune as all my routine bloods are normal and other disorders Would show.
What do you think could cause the tgab raise? I’m going to my routine doctor this week so any suggestions what I should ask for?
Well, usually when FT4 is low then TSH is raised (not low like yours is) so something is not right and if the doc thinks it's not thyroid related they should be checking other things out if you have disruptive symptoms.
Just because a set of bloods comes back OK doesn't mean they've checked everything out or that all is OK. Have you had ANA antibodies tested and if so, what were the results?
A number of conditions can cause raised TgAb antibodies so don't dismiss your GP's opinion yet. He could be right that something else is going on. Pursue it and make sure you get other possibilities checked out so to ensure a correct diagnosis.
When your tsh is low and your ft4 it's usually a sign of pituitary malfunction not thyroid
Well, that's a possibility and a range of conditions can affect pituitary gland function. It's definitely worth pursuing further tests to find out what's going on.
I would self medicate if I was you. This is what I have had to do because my TSH was in range and my GP refused to help me even though I have Graves disease. His words were that he would be stuck off if he gave me a prescription for levothyroxine. I am sitting in front of him balding and with my nails dropping off and he thinks I don't need any treatment !? I am ok now because I am in remission again. Read my story on my profile page.
Was this a Diabetes specialist?
Or just in need of visit to specsavers?
FT4 is rock bottom
Currently NHS doesn't recognise Hashimoto's with only high TG antibodies
Unlike much research
ncbi.nlm.nih.gov/pubmed/303...
Did you do this test as early as possible in morning before eating or drinking anything other than water?
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists
thyroiduk.org.uk/tuk/About_...
What are your vitamin D, folate, ferritin and B12 levels?
Do you test these regularly?
What vitamin supplements do you currently take
Are you on, or have you tried strictly gluten free diet?
Oh I do feel most nhs endo’s have diabetic specialist knowledge but drastically lack any interest in thyroid!
Yes blood Tests done as recommended.
I struggle to raise my ferritin and currently take ferrous gluconate, it’s always teetering on the low side around 50 at last November test.
B12 and D i do supplement with as per protocols on STTM sites I think.....November’s b12 test was well out of range but I do supplement.
Have been strictly gluten free for 4 years now, made a huge difference initially,
Some local GPs seem to know more about the thyroid than the one endo I know of (we haven't met and I wouldn't want to see him!) My local surgery sent a referral request because I still had hypo symptoms in spite of my bloods being in range". He refused the referral because my bloods were in range!!!!
But since then I have found a brilliant GP connected with the local practice who not only admitted that he didn't know much about thyroid treatment but had the courage to increase my Levo dose anyway - more than once!
I'm still not 100% but it's a miracle to find someone who will listen and is humble (and confident) enough to admit he doesn't know it all and is actually interested in learning more (except he seldom has much time to study). He asked for some information and afterwards said he was quite impressed that I hadn't just sent him articles from the newspaper but had done my research!
One in a million! But perhaps there's another one lurking in your local practice? Try asking the receptionist which doctor is most likely to be willing to listen and help you.
Hi Jnetti
Thankyou for sharing your story, it is encouraging to know some doctors are willing to work with us and maybe act a little unconventional.
I understand they are bound by the nice guidelines but I do feel they rely to heavily on blood work when clinical symptoms are almost discarded!
I will do some digging around at my local practice or just work my way through all the doctors,in the hope of eventually finding an anomaly.
I would ask one of the regular receptionists first. Don't diss any of the doctors you have already seen of course, though the endo's attitude might be something to ask the Practice Manager's advice about making a formal complaint (backed up by solid evidence, such as you can find through the TUK home page or from this great forum).
You could just explain that you still feel very unwell though your bloods are in range, and could they recommend which doctor might be the best one to help. I found my star doctor when needing to see someone and she suggested this one as "He's very good". And sure enough...!
All the doctors I've seen at various times seem nice enough, but the TSH only brainwashing and conviction that if our bloods are OK we MUST be OK is the problem.
It looks like a problem with pituitary or hypothalamus (aka central hypo) as TSH is out of sync with FT4 - with a low normal TSH like that your FT4 should be near top of range and it's at the bottom.
Sounds as clueless as the endo I saw!
You've already been given good advice, so wishing you a positive way forward.
You appear to be undermedicated.
Are you prescribed replacement thyroid hormone?
I self medicate/useless medics....would be very ill if I didn't.
Advice and support from TUK saved me....you have come to the right place.
Hiya...great name DippyDame.
Could you Pm me your source, I think I may be at the point of self medicating x
I think you need to push for a trial of levothyroxine first.....you say above that you are not medicated.
I wouldn't like to plunge straight into T3 without eliminating other possibilities
Sadly there is no quick fix (think headache/paracetamol)
The body needs time to adjust to each small change
Look up 'central hypothyroidism'. Facebook 'Thyroid patients Canada' recently did a blog on it. It is where TSH and T4 & T3 are low.
Edited to include link
What time waa your blood draw, that can make a big difference. Google thyroid circadian rhythm. Very early morning is best or as near to 8 as possible.
Thankyou everyone for your much needed support. I was a In a fog last night and exhausted from a day of appointments!
I mentioned central hypothyroidism to him, he said it would be if my T4 was low out of range and at that point he would treat me!
He totally dismissed all my symptoms, I printed off the thyroid uk list to give him. He didn’t read it and said the majority of the population had symptoms off the list!
So basically I’m to be kept I’ll, until my T4 drops out of range! How long is a piece of string???
Anyways more positive today, ready to fight the good fight 💪
Have a good day warriors x
It could take years for you to get to that stage. I was left ill for over 2 years by my GP who thought it was the menopause during that time I went from a size 12 to a size 8 and I looked like I had an incurable disease or worse. My hair was thin and some of the nails on my feet dropped off which was very painful. My neck was swollen because I had a goitre and not one doctor spotted it until a new GP joined the surgery and I decided to ask him because I had been advised by Elaine Moore that my TSH was suppressed at 0.002. He could see I had a goitre and started me on carbimazole and referred me to a Endocrinologist who was useless and I had to walk out of his clinic when he offered me counselling for my Graves' Disease. I have had to do my own blood tests and buy Thyroid S from Thailand because I was getting no help from the NHS because of the guidelines about the TSH.
It’s devastating for us that have to fight against the ridiculous nice guidelines!
He offered you counselling!! Oh my I would have walked out too. The system is keeping us ill.
Sometimes you have to take things into your own hands in order to have a life.
Glad your on the right track x
This reply is buried in the responses and might be of use to others.
Look up 'central hypothyroidism'. Low TSH & low fT4, fT3.
I thought so too. It doesn't apply to me so unfortunately I've no wisdom of experience to offer.
It really is worth reading ALL of the 'thyroid patients canada' articles. They explain the research in a very readable way.
What to do now?
What to do now?
ndt what to do now
What to do now?? ("Normal")
Now what do I do 🤦♀️
