Hi, i can not get help off my my care providers. My T4 is constantly low. TSH is in normal range. T3 was 4.9 range 3.5-6.5 last time i checked in march. The endo says it is not thyroid even though my T4 is low. My mum is hypo, my 13 yr old was just diagnosed hypo with low T4 and tsh normal just like mine. Exactly the same results as me.
I have symptoms fatigue is off the charts. No autoimmune involved as have done antibodies
I,m B12 deficient and treat myself with injections on top of the surgery 8 weekly.
Asked my GP recently (well begged) to trial me on levo. She saught some advice and guidance and still a big NO.
Any advice please as i have been chasing a diagnosis for over 2 years now and at my wits end.
Thank you
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Cazzyr
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If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Thyroid scan. Your doctor may recommend a thyroid scan to help evaluate thyroid nodules. During this test, an isotope of radioactive iodine is injected into a vein in your arm. You then lie on a table while a special camera produces an image of your thyroid on a computer screen.
Nodules that produce excess thyroid hormone — called hot nodules — show up on the scan because they take up more of the isotope than normal thyroid tissue does. Hot nodules are almost always noncancerous.
Folate is good I'm supplementing 10mg folic daily to remain optimal. I inject b12 daily so I need it . I test folate every 3 months .I'm on vit D protocol so that's good also .
I take b complex but always stop a week before any thyroid tests .
I'm honestly at a loss
Why is it a struggle to get a diagnosis.
My daughter has the same as me , low t4 normal in range tsh yet she got diagnosed straight away . Bless her
OK, so what you could possibly be looking at here - and I am not medically trained so I am not diagnosing but just pointing out the possibility - what could be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or minimally raised, and the FT4 will be low/below range.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before.
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:
You could do some more research, print out anything that may help and show your GP.
You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them).
You can email Dionne at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
My daughter has the same as me , low t4 normal in range tsh yet she got diagnosed straight away .
Was your daughter's FT4 below range?
Does she see the same doctor as you?
If so I don't understand why your results are being ignored.
What was her diagnosis - Primary Hypothyroidism, Central Hypothyroidism, Autoimmune thyroid disease?
Thank you. It was the endo who says it is not thyroid. I suspected he did not know about thyroid.
I had a thyroid scan that found a cyst in the thyroid, i can feel it, They said not to worry about it. My voice is constantly hoarse. My daughters T4 below range and TSH in normal range just like mine, it was her paedatrician that diagnosed her straight away with those results through advice from haematologist.. I don't get why my Dr won't just trial levo why is it so difficult.
I have a list of private Drs TUK sent me which i have printed off and will sift through and make some calls tomorrow. I suppose i just need extra reassurance I,m not barking up the wrong tree. It,s getting too much now , this fatigue is awful. I have a referral to CFS clinic which i know is a waste of time as i,m sure it is thyroid. My mum is Hypo she was diagnosed at 40, she is 86 now i am in my 40s
I would use your daughter's paediatrician's diagnosis as a lever with your GP.
Ask why she has a diagnosis when her results are the same as yours.
Your GP is, unfortunately, ignorant which most of them are, as are many endos.
We do have some members here who have diagnosed and treated Central Hypothyroidism so it might be worth making a new post to attract their attention so that you can see if they are in the same area as you and maybe get referred to the same hospital or endo.
We expect doctors to be knowledgeable but I found out they're not with regard to dysfunctional thyroid glands and that some have no knowledge at all. That's when we find the benefit of 'doing it ourselves' if we can source thyroid hormones and that can be a problem.
I had a TSH of 100 and doctor from my surgery phoned to tell me that I had nothing wrong and result was good. I thought that meant I had nothing wrong with me even though I felt awful.
I only got diagnosed as I had another blood test form (I had phoned surgery when away from home to leave one for me at Reception). I had never heard of hypothyroidism but neither did the GP. The blood dept phoned my surgery to ask why I had a second blood test, shortly after the first. That's when a second GP at the surgery who phoned to ask how I got a second blood test form and I said "I did". She then said you've hypothyroidism come and get a prescription. That was my introduction into a failing thyroid gland.
I'm glad to say I am now well, thanks to Thyroiduk before this forum began.
It's a pity that not all GPs seem to have some knowledge about how to treat patients with a dysfunctional thyroid gland. I have heard nonsense from those I would expect to have been fully trained about the thyroid gland. I think they must do half-a-day's training.
Why could people be given NDTs (natural dessicated thyroid hormones - the very original replacement) from 1892 onwards. No blood tests then, only the knowledge of the doctors about symptoms of a dysfunctional thyroid gland. Prescribed NDTs for their patients who recovered their health. People didn't die from then on.
The last of our 'trained doctors' were Dr Gordon Skinner and Dr Barry Peatfield and I was fortunate to consult both.
This woman's life was saved after she posted on this forum and was given Dr Skinner's name - he saved her.
Dr Barry was also excellent and saved lives too but he had to give up his licence due to being pursued like a criminal. Due to giving up his Licence, he was able to still give advise people who to recover and also saved many and led them to restore their health. This book is definately worth reading.
Last vit D was 212 nmol. I was supplementing 10000iu d3 100mcg k2 and 800mh magnesium daily .
I have since switched to Annie barr patches that consist of 50000iu d3 k2 and magnesium pop one patch on for 24 hours once a week . I feel better on them . Bit more energy .
D was 55 at its lowest in 2016
B12 was 162 when diagnosed.
I was supplenting b12 at the time so probably would of been lower. I self inject
Last folate in May 24ng/ml
D was 55 nmol at its lowest in 2017.
Not had full celiac screen
Ferritin fluctuates from the 100s to below 100s its now at 74 ng/ ml ( range 10-120).
Thanks for updating with the blood test results, the actual numbers are useful. Usually when fT4 falls TSH rises also. Your TSH is not as high as would be expected with a low fT4. This can happen with central hypothyroidism (a failing pituitary or hypothalamus) but usually TSH is much lower and other hormones are affected. Central hypothyroidism is quite rare.
TSH can fail to rise for a number of other reasons. Very strict dieting, severe illness or depression can keep TSH down. Also, if there is a period of high thyroid hormone levels it can ‘down regulate the axis’, the response of TSH to low fT4 is blunted. This could have happened in your case as your thyroid seems to be diseased and in these cases it can release excess hormone at times.
The only way to find out if you are hypothyroid is with a trial of thyroid hormone, so all you can do is be persistent, perhaps try to get support from family/ friends or even your MP. Unfortunately, endocrinologists have a blind adherence to the TSH result which is quite irrational and very difficult to counter.
Your average fT3 is unusual (with low fT4 non-elevated TSH), this I can’t explain. It may be due to a short term release of T3 so it would be worth getting just one more TSH, fT3, fT4 blood test.
TSH can move around a bit, especially in women (menstrual cycle), but yours seems to be a limit more erratic. The real test is the response to thyroid hormone therapy rather than the blood tests.
Maybe worth getting your female hormones checked too. They could be v low especially if your ovaries removed. They produce small amount of testosterone as well as oestrogen so not having that can leave you feeling v tired and lacking oomph.
Hi. You might consider doing some through-the-internet genetic testing, to look at your mutations. Possibly you have a mutation regarding b12, and need a different, bioactive, form/forms of it rather than your injections...when I got into my mid-thirties I noticed cyanocobalamin wasn't helping me anymore. I couldn't even get out of bed for more than a few hours each day. I did the testing, (cost 200 dollars, I'm in U.S.) plugged the file into some online databases, ordered a bioactive sublingual b and within a couple days, I was 50 percent better, ordered a second kind to go with it, as per the online recommendations of Dr. Amy Yasko, and with that, I was 75 percent better, and able to get much of my life back...I only wish I hadn't suffered for those two years before I took that step. Best of luck to you, may you feel better soon!
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