Long story short, I was diagnosed with Hashimotos about 10 years ago with a TPO reading of 1500 but have never been medicated as I’ve remained euthyroid. My TSH is always below 1 - usually about 0.9. My free T4 and free T3 are always low normal in range sometimes as low as 3.8 in a range of 3.6 - 6.4 for free T3 and sometimes as low as 14 in a range of 12-22 for free T4.
I have constant symptoms which are even worse during my period and at ovulation. I’ve got a baby whose 18 months and my symptoms have been worse since having her.
Symptoms include but aren’t limited to:
Anxiety, internal and external trembles, cold but sometimes hot flushes, sleep issues, irritability an impatience, hand and foot pain, exhaustion, feeling like I’ve been hit by a bus on waking, hair loss, hypoglycaemia (diabetes check clear), IBS, palpitations...... I also now have borderline high cholesterol which is ridiculous as I am 5ft 8, 8.5 stone, walk 10,000 every day, don’t eat red meat or cheese and live on a diet of fish and vegetables as I don’t really like fatty foods. I do eat chocolate but come on?! Everyone does!!
Just had my routine blood test done. Doctor refuses T3 and T4 this time as he said they will only be done if TSH is wrong. Frustrating but can’t do much. Anyway, my TSH came back as 0.5. This is still within range of course but HOW can I feel normal when it’s this low? Or should I? I’m on the verge of just giving up trying to prove that my thyroid causes my symptoms. I’m sick of being told it’s just from having the baby - all new mums are tired or maybe it’s a touch of postnatal depression - it’s not! I’m not depressed, I’m angry and unwell. And so sick of fighting
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Paolatello
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Having a low TSH does not make you feel bad. Nor does having a high TSH. The TSH itself does not make you feel anything. It doesn't cause symptoms.
It's low T3 that causes symptoms. And, if yours is bottom of the range, then you probably will feel bad. But, doctors know so little about thyroid, they don't know that.
And, your low T3 is the reason for your highish cholesterol. Cholesterol levels have nothing to do with your height, your weight or your diet - especially they have nothing to do with fat. Cholesterol and fat are two entirely different substances, and do not turn into each other.
So, low FT3 and low TSH. Has it been like that for all the 10 years you've been diagnosed? Or is this a recent thing? Your TSH doesn't correspond to your thyroid hormones - with an FT3 that low, your TSH should be higher. So, it rather sounds as if you have Central hypo.
Central hypo is when the problem lies with the pituitary (Secondary hypo) or the hypothalamus (Tertiary hypo), rather than the thyroid itself (Primary hypo, including autoimmune thyroiditis). But, you doctor will never be able to diagnose that by just testing the TSH - it will always be low. You need to be referred to an endo for further testing (all the other pituitary hormones). The problem is, how to convince your GP, because I doubt he's ever heard of Central Hypo. So, I would advise you to do some research and have some information to show him.
Oh, and by the way, I don't like chocolate. But eating it won't raise your cholesterol.
Thank you for your advice. Everyone always says with low tsh and low free T3 it could be Central hypothyroidism but would I then have the TPO antibodies?
I had no heavy blood loss and I’ve had these symptoms for years. The baby just seemed to make things worse. Which hormones do I need testing to confirm central hypothyroidism?
Pituitary hormones, like HGH and ACTH. The pituitary produces quite a few hormones, and they could all be low, causing you a lot of symptoms. It's more difficult to prove the hypothalamus is at fault, but the can test TRH - although I believe they rarely do.
But it would have to be an endo orders them - and a brain scan - your GP cannot do them, and you cannot do them privately, I'm afraid.
Your symptoms and test results look (to me ) as though you are hypo. I gather that this can be triggered after having a baby. If I were you I’d see a good endocrinologist... privately if necessary. I remember having hypo symptoms after my son was born. Unfortunately I didn’t know about the thyroid connection and neither did my doctor...
But how do I know it’s central hypothyroidism? The doctors just say my results are within range. When I was first unwell twelve years ago my results were very hyperthyroid. My tsh was undetectable and my free T4 was 34. They wanted to treat me for hyper but when I had my bloods done again three months later it was all back to normal. Since then I’ve had fluctuations in symptoms. Some days I feel horrendously tired and have hypo symptoms and other days I have anxiety, poor sleep, panic attacks and feel jittery and hypoglycaemic. This usually lasts a day or two and then I go back to feeling hypo. The hypo symptoms are easier to deal with than the hyper ones because the anxiety and panic attacks scare me. All of this sounds too much like hashis to me rather than central hypo
You don't know, but your blood tests and symptoms suggest it. You would be expected have a TSH over 3 with your thyroid hormone levels, or even over range. You can't know until you've had other pituitary function tests and a CT scan or MRI. Low T3 causes panic attacks, anxiety and adrenaline rushes as your system pumps out adrenaline to keep you gong as there is not enough T3 to do that.
Thanks for letting me know. So if it is CH how would the treatment differ? If my bloods are technically in range would a diagnosis of CH mean they do something for me or would they still just leave me to suffer until I become hypo?
You are already hypo. A decent endo (hard to come by) will just treat you for hypo with thyroxine and state that your TSH should be disregarded in blood tests
They are very low in range and you are symptomatic - which is more important than numbers. But don't expect a GP to look at anything other than numbers
Can I just ask all of you kind people who have replied to me - is the fact that I’m currently unmedicated and symptomatic a serious issue? I mean, I look after my daughter, work a professional full time job and socialise when I have the time. I walk miles every day and I eat well. I’m very symptomatic and some days are so tough but others are great. The symptoms that terrify me are the heart palpitations, the breathlessness and the hypoglycaemia. These come and go over the month and are worse at certain times in my cycle.
I guess what I’m asking is am I in danger of just dropping down dead? Sometimes it feels like my body has to work so hard just to exist where as other days are so easy.
EXTREMELY common to have low vitamin levels when we have autoimmune thyroid disease (Hashimoto's) confirmed by high thyroid antibodies
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
Are you on strictly gluten free diet? Or tried it?
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
while still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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