Hi! This is my first time posting so apologies if I am a little unsure!
I have been suffering for years with anxiety and depression. It started when I was pregnant with my youngest 4 years ago and hasn't really gone away. I had a very quick birth with him and haemorrhaged quite badly after the birth.
I am currently signed off work and feeling dreadful. I experience the most awful mental health difficulties during ovulation and my period which renders me useless.
I have pushed to have blood tests recently and was told the results were normal apart from low Vit D. However I self referred to a private endocrinologist who looked at the results and told me my free T4 is borderline (low normal - 7.8pmol/L). I have normal TSH. Not really sure what this all means. When I looked at the page the T4 had been highlighted in bold and asterisked. I want to know whether it is common practice for this result to be ignored and whether it means something? I'm having repeat tests plus some others.
I guess looking at symptoms of thyroid disorders I can relate. I sleep/nap most days when I'm able and still feel rubbish, I never feel quite right, I was once told by a health professional in passing that they noticed I had eczema on my hands (they get very dry), a couple of years ago I went to my GP regarding a pain/full feeling low in the front of my neck and he said it was a symptom of my anxiety and I should take antidepressants. The mental health side is really taking its toll - especially during my period. I'm like a different person entirely.
I'm wondering if I am missing something significant here. Any help would be gratefully received - particularly any thoughts on my results.
Thank you x
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Vicm78
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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 money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Your story isn't unusual and if you are in the UK, doctors are advised not to diagnose patients with hypothyroidism until the TSH reaches 10. By that time, if 10 is ever reached, people can be suffering badly with clinical symptoms and may be givenother medications to control these rather than diagnose hypothyroidism.
In other countries people are diagnosed when the TSH reaches 3+.
When you request your next blood test ask for TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Usually NHS only tests TSH and T4 but it doesn't give the bigger picture.
The tests must be at the very earliest possible, fasting and if you were taking thyroid hormone replacements you'd miss the dose and take after test.
You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Also B12, Vit D, iron, ferritin and folate (GP should do all of these).
Deficiencies also cause symptoms so we have to make sure everything is optimal.
TSH and is from the pituitary gland and stands for “thyroid stimulating hormone” and the test measures how much of this hormone is in your blood. TSH is produced by the pituitary gland in your brain. This gland tells your thyroid to make and release the thyroid hormones into your blood.
Always get a print-out of your results with the ranges for your own records and post if you have a query.
If you have thyroid antibodies in your blood it would mean you have an Autoimmune Thyroid Disease also called hashimoto's but treatment is the same as for hypothyroidism.
Thank you. I think I was just confused as the TSH is normal but T4 is low. Wanted to know why this was being ignored.
I am being sent for ANA testing ? Ferritin, TPO, TF1 and XTFT plus Urine Metanephrines (24 hour urine test) I don't really know what these are for. I haven't been told to fast either this time around. Will they included everything you mention? I am paying privately through an endocrinologist for these as I feel I am banging my head against the wall with my GP.
My Vit D is low but B12, Folate etc are fine.
I have pretty much slept all day today and feel awful still.
I'm on the verge of giving up work as I feel so bad. Would low T4 cause this?
You really do need to post your results, with the ranges. 'Fine' and 'normal' are absolutely useless. There are ranges, but just being 'in-range' - which is all a doctor means by 'normal' - is not good enough. It's where in the range things fall, that counts. Plus the fact that the ranges are far too wide, they can't possibly 'normal' across the board.
I doubt if your private doctor will have tested everything shaws has mentioned, unless you specifically asked for them. Doctors only have a vague idea what tests are needed when it comes to thyroid. So, I think you're going to have to take him the list.
As far as I know, they don't test for FT1, and XTFT doesn't exist, I don't think.
I don't know what the tests the Endo is doing and the reason for doing them. You do need, first thing a.m. and fasting, the ones I suggested above if you've not had them done before. I do hope he's not wasting your money.
Low T4 would suggest to me you are deficient in thyroid hormones (or if not taking levothyroxine) and your T3 may be low also. T4 is a prohormone that i t has to convert to T3. T3 is the only Active Thyroid Hormone which should be optimum as it has to saturate our T3 receptor cells in order for our metabolism to work normally.
However it is the brain and heart which needs the most T3 - T4 is inactive. Mental health can be due to very low or below the range T3. So it is in your own interest to get a Free T4 and Free T3 blood test as many doctors wont do them and also I believe the NHS only test the TSH and T4. You also need antibodies tested. If antibodies are present you would have an Autoimmune Thyroid Disease called Hashimoto's.
I am still not convinced about the Endos tests as I know nothing about them and whether they will reveal about Free T3 and Free T4. Try not to worry about the mental health issue at present until you have your results. I hope he is isn't wasting your money and time. You say above your TSH is 'normal' but normal for us is 1 or lower not above although it will be above if undiagnosed or undertreated.
I do know you are desperate for a diagnosis/solution.
Read about FT3 and FT4 in the following: p.s. has Endo ever done an FT3 and FT4. Ask him
Thank you both. As I say it is all very new to me so apologies if my info is vague and I am unfamiliar with the tests. I only went to the endo last night. Tests are being done through NHS but do not include T3. The range for TSH is 0.3-5.0mu/L and mine was 1.41. For my Free T4 the range was 7.9-16pmol/L and mine was 7.8. No one has mentioned T3 tests to me.
Feeling quite overwhelmed with everything. Think I need to do some reading.
Sheehan's syndrome which is caused by massive blood loss after birth of baby can upset pituitary.
See link I posted
This could be reason. It's a cause of secondary hypothyroidism
TSH is messenger chemical made by pituitary.
Essential to test TSH, FT4 and FT3 together. Always do this test as early as possible in morning and fasting. This gives highest TSH and most consistent results
Post actual results of B12, Folate, ferritin and vitamin D (plus ranges)
A "fine" result doesn't always turn out to be true. Always get actual results and ranges on all blood tests
If you have this, your TSH will never rise high enough for the NHS to treat - you should be treated as soon as free T4 drops to bottom of range. An endo should know that.
Blood tests for thyroid hormones have to be at the very earliest and fasting (you can drink water) and if you were taking replacement thyroid hormones (levothyroine) you'd allow a 24 hour gap between last dose and test and take afterwards. This helps keep the TSH at its highest and prevents the doctor reducing dose.
Serum Folate was 10.6 ug/L - range is >2.5. My Vit D was 41 - between 25 and 50 is considered an 'insufficiency' on my results. I haven't had Ferritin done yet. B12 was normal but I don't have the result on the sheet I have.
Thanks for your thoughts SlowdDragon re the birth. I definitely changed dramatically in my behaviour during the pregnancy and after the birth of my second. I also started having bad panic attacks and these have started again recently.
After your suggestions I am going to request all my maternity notes and all blood results I have had done since the birth.
I'm thinking that I need the endocrinologist to clarify the bloods she is sending me for and ask for the T4/T3 tests as well. I'm not sure after hearing all your advice that I am having all the tests I need and I haven't been told to fast this time.
No! No one investigated this at all. I was kept in overnight for observation but that was it. I was close to needing a transfusion but they managed to get everything under control. I felt awful after the birth and rang to get my iron results but apparently these were 'normal'. Within 2 months I was having panic attacks and major anxiety. I've never been the same since and I'm exhausted trying to get doctors to listen to me. I keep being told I should just accept that I have recurring anxiety and depression and to take antidepressants. Any physical symptoms I describe they just tell me they are physical manifestations of mental health issues.
Could this pituitary problem cause issues with my menstrual cycle? I seem to become a mess/wreck and can't function during ovulation and menstruation. I've been told I'm just sensitive to hormones. I was prescribed an oral contraceptive to see if that helped. It was supposed to stop ovulation altogether but it sent me absolutely bonkers! Worse than ever.
I think that if doctors cannot figure out what's wrong they sort of make up stories to fit the occasion, whereas Hidden and SlowDragon have opened a window which makes sense which you should pursue, if only the Endos/doctors were au fait with these conditions.
When our thyroid hormones are out of kilter these are some of the clinical symptoms and i doubt a doctor know more than 1. I am sure you can tick off more than a few.
Many doctors wont step out of their guidelines which is to diagnose only when TSH reaches 10 and test TSH and T4 alone. So we've no idea (and we really should not have as it should come from the professionals) whether our numbers are optimal or not. Most doctors think that if results are somewhere in range that we're on sufficient and fail to know that the aim of thyroid hormone replacements is to relieve ALL of our clinical symptoms not give us more.
I failed to mention I was diagnosed with Ménière's disease in the summer. I had bouts of vertigo, poor hearing and tinnitus/roaring in my ears. Is there a link between poor hearing/tinnitus and thyroid issues?
B12 range on blood test is very wide, typically 190-750 approx. We can get symptoms even when results are in range and/or have trouble using B12 in cells for other reasons
T3 is the active hormone that gives us our well being. Most is converted from T4 and with inadequate amounts of T4, there will be low amounts of T3 and you will experience hypothyroid symptoms.
Long term low thyroid hormones can compromise the adrenal glands and a common symptom of adrenal fatigue is anxiety & panic attacks. Depression is a common symptom of low thyroid hormone.
During a woman’s regular menstrual cycles, progesterone is produced primarily in the ovaries but during pregnancy progesterone comes from the baby’s placenta as opposed to the ovaries which may shut off. After childbirth progesterone may drop resulting in oestrogen dominance which will encourage higher levels of the protein carrier in the blood stream which may bind to thyroid hormones making them inactive.
Also a lack of progesterone can increase cortisol-binding globulin which will make available (active) cortisol low. (Only active cortisol can pass through cell membranes and activate receptors inside the cells).
It may also impair adrenal output by interfering with the release of cortisol from the adrenal cortex. Cortisol is made from progesterone and will steal to keep supplies going, compromising progesterone levels further. Or the other scenario is sometimes cortisol levels become high in order to support the low thyroid levels and this may block progesterone receptors, making them less responsive.
I had long term undiagnosed low thyroid hormones and compromised adrenal hormone output for years and could never take oral contraception either. Also had bouts of “vertigo, poor hearing and tinnitus/roaring in my ears” & still do if thyroid hormones go askew due to over partying …. however all over I am now well.
Ensure Vit B12, Vit D, folate & ferritin are all optimal in range and ask your doctor to test sex hormones and post results complete with ranges (numbers in brackets) for members to comment.
Thank you this is very interesting. It is nearly 4 and a half years since the birth of my youngest and nothing has been resolved.
I feel as though I'm in constant high alert in my head but I am exhausted in my body. I lose my words and can't remember what I am saying quite frequently.
Do you mind me asking why you can't take oral contraceptives please? Did it make your symptoms worse?
I agree, if I have a drink or go out late I get the roaring and tinnitus.
I had my Hormone bloods done around 9 days before my period.
Years ago I tried every oral contraceptive going & they all made me feel very ill from nausea to permanent PMS & depression. Although are supposedly meant to regulate irregular periods, over the years they totally messed up my already messed menstral cycle as I was always having to switch.
FSH helps manage the menstrual cycle and stimulates the ovaries to produce eggs but I am not good at reading these results apart from menopausal stuff.
I meant you to ask your doctor to test oestrogen, progesterone, etc as these need to balance. When your adrenals become sluggish (through low thyroid hormone), the ACTH (pituitary gland) will continue encouraging sluggish adrenals & when they can’t respond appropriately, elevated oestrogen often results.
Elevated oestrogen can bind to both thyroid hormones and cortisol and the HPA-Axis and HPT-Axis should work in parallel just as cortisol and TSH should correlate.
Alternatively you could test cortisol levels to see where you are but you still need full TFT's as others have advised above to assess what T3 levels are and optimal iron/nutrients levels.
I could sit here and cry because you have to be the first person who is taking what I have said seriously. Thank you!
I apologise for more questions (I'll make these the last I promise!) How would antidepressants make things worse? I'm interested because I took them over a year ago and although I found them helpful with my mental state, other people said I became a bit numb and didn't care about anything. I put on tons of weight and had to wean myself off them gradually with no medical support.
NDT is the very original thyroid hormone replacement since 1892 in different forms. It contains all of the thyroid hormones a healthy gland would produce i.e. T4, T3, T2, T1 and calcitonin (good for bones) and it is the very original produced from pigs thyroid glands but nowadays they only will prescribe levothyroxine which is synthetic and although many seem to feel better most on this forum do not.
Usually if hypo we may not convert levothyroxine (T4) into sufficient T3 and it is T3 which is the only active thyroid hormone needed in all our T3 receptor cells. Our brains and heart need the most T3.
It's a whole new 'ball game' as the Americans would say. It is a big learning curve but when we recover our health it is such an immense relief to feel well and symptom-free.
Due to you being hypo, T3 would probably benefit you more than antid's as it is thyroid hormones you need and psychiatrists can also prescribe T3 also known as liothyronine.
Many on the forum now source their own thyroid hormones, mainly NDT or T3 and some add T3 to T4 (levothyroxine).
The thing is they say my TSH is 'normal' 1.41 my/L (range is 0.3-5.0) but the T4 is at the lower end of normal range at 7.8 pmol/L (range is 7.9-16.0). Have had no T3 tests at all.
They've put on my blood test sheet that my clinical details are 'borderline TFTs, anxiety ++' Don't really know what botderline TFTs means and if I should be concerned by that! Would a T3 be tested within a TFT1 test or an XTFT test? This is what my endo has sent me for.
They're so smart in that they know no clinical symptoms due to hypo but slap anxiety or depression on the person's records. They also don't test Free T4 and Free T3 which is far more revealing, i.e. read about both on the following and I think it will be an eye-opener.
Thanks. After all the advice I now have a clear plan:
I will be contacting the endo to ask why my tests aren't early morning fasting tests and if I can have the full range of tests inc. T3. If refused I will pay privately for the range of T4 and T3 tests. Will look at the info re private testing that you have sent.
I will be asking for my maternity/birth notes from the hospital inc. all bloods I have had taken in the past 4 years. I want to know more about the blood loss at birth.I will present endo with this info. I did tell her about the birth but this was not deemed significant during our conversation. I will ask about the pituitary too.
I have another GP appointment in a couple of weeks and I intend to raise all these issues rather than being fobbed off and told to take anti depressants again.
Wow! Feeling a lot more confident now and not so crazy!!
The plus side is that I have a wonderful counsellor who recommended I get full thyroid testing done in the first place. She has experience of seeing clients whose mental health issues have been directly linked to thyroid problems. She is supporting me lots and wants to know what my results are.
I doubt your Endo will be aware of the purpose of early morning testing. I believe they've also been instructed that TSH and T4 are sufficient but we, the patients, know why the FT4 and FT3s are necessary at times and you can read about them in the following link:
I am glad you have a good Councillor as people who deal with mental health conditions seem to be far more aware that a deficiency in thyroid hormones can affect their clients. i.e. T3 is the only active thyroid hormone and is required in our billions of receptor cells.
Frustratingly enough I just rang the laboratory where I will have tests done and they say thyroid tests do not require fasting!!! I also enquirer about T3 - they said they do test for T3 and it will prob be included in the tests my endo has asked for. I'm really sorry to be a nuisance but does anyone know if the T3 will be included in these tests that are detailed in my sheet:
Ferritin
TPO (Thyroid Antibodies Anti TPO)
TFT1: suspected thyroid disease
XTFT: Thyroid function test
Immunology
ANA testing
Urine:
Urine Metanephrines
This is SO frustrating! I've contacted endo and waiting for a response re tests.
It definitely not a silly question but it seems to be their rules (has it been originated from Big Pharma who invented levothyroxine). After all many doctors in the USA were paid to prescribe it instead of the NDT they used to.
Previous to that we were diagnosed upon clinical symptoms alone, given NDT which was increased until patient was symptom free. It also has all the hormones a healthy gland would produce, i.e. T4, T3, T2, T1 and calcitonin (latter good for bones). They also make more money by symptoms being prescribed as 'due to something other than thyroid gland'. No blood tests were invented then.
On of our doctors who disagreed with the modern method - a Virologist - booked a Conference and invited every single UK Endocrinologist to discuss conditions of the thyroid gland. He had said patients were in a parlous state due to modern method as he was getting the waifs/strays coming to him and he was diagnosing/treating due to symptoms.
One-by-one these Endocrinologists refused, the last one the day before.
Dr S was pursued by the authorities because of the way he was treating patients (patients never complained - so who was? ) but he was always discharged by the GMC as treating properly but that didn't stop the appearances. He died of a stroke but his Staff have been collating all of the evidence of his/their Research over the past three years and I posted this recently:-
Thank you for your interesting responses. You have been so helpful.
Tomorrow morning first thing I am going to do my Medicheck blood tests - all the tests you advised in this post including T3 . I also have blood tests at the hospital tomorrow morning (although not as comprehensive as the medichecks ones) so will be very interesting to see how things compare. I will fast and they are early morning tests.
I am also doing a 'urine metanephrines' 24 hour urine test today so I can take my sample up at the same time. I think this is checking for hormones from adrenal glands? Not so sure why I've been asked to do it! Any info on this would be helpful if anyone has any experience of this?
Also following on from everyone's great advice I have booked to get all my notes from the midwife regarding my birth and blood loss.
Feel a bit more in control. It's interesting that the minute I have taken a step back and not just thought about being the 'recurrent depressive' my GP says I am, I have started to think seriously about my wellbeing. I have noticed I generally feel tired and rubbish all the time - even my husband says I sleep more than the average person and often say I feel unwell. I also experience dizzy spells a lot but I've just got used to it I guess.
Really hoping my results will shed some light on things. I'll post results once I have them.
Thank you so much. I had seen the list of symptoms - I have a fair few but have never discussed them with a GP because I am so used to experiencing them. It's my everyday mode of operating really!! Nothing unusual to me (which feels very sad now I think about it). I am concerned that my results won't give the GP/Endocrinologist enough / be serious enough for them to do anything about it.
Should this be the case, is it worth me pursuing the fact that the original Free T4 was low/borderline?
Unfortunately, in these modern times few doctors take notice of clinical symptoms or know any at all.
If you are in the UK, I believe doctors are told that TSH and T4 are sufficient but we, the patients, know differently. I will give a link and read about why FT4 and FT3 are necessary - rarely taken in the UK.
You can get private tests which will do these. Keep in mind that it is T3 alone which is the Active thyroid hormone. T4 is inactive and has to convert to T3, some of us may not convert efficiently to T3.
Hi quick question - thanks all for recommendations of MediChecks testing. Just wondered if anyone has experience of using these (I know they are recommended on the site). I am now seriously considering ordering all the tests you suggested online as finger prick tests. All in they will cost me around £90 so want to make sure they are worth the money!
We have two recommended labs - Blue Horizon as well as Medicheck and both do home tests.
Whether the doctor accepts them or not would be a guess but members can certainly contribute. As far as I know GPs have been directed that only TSH and T4 are necessary and many believe that a TSH even near the top of the range is fine (remember in the UK they've been directed not to diagnose until TSH reaches 10) but not when we've already been diagnosed, then the TSH should be 1 or lower.
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