I was diagnosed with underactive thyroid since I was 11 years old, I am now 26. I haven’t been feeling too great recently and not had a blood test for a while, so I had some tests done last week. Today the doctor informed me that it was too low and I was later told on the same day that in fact it was too high. I’m unsure which one to believe and think I should be referred, rather than getting incorrect information from my gp.
I have attached my results, thank you in advance for your advice 
Oh for the love of god 🤪 These GP’s! Your TSH is low out of range but that means nothing without the FT4/3 result. What type of thyroid issue do you have?You cannot get a full picture with TSH alone.
If you feel great, I suspect your replacement is optimal.
Hi there! Thank you for your response, and I thought that might be the case 😂 they wanted me to stop taking my meds so I would have been even lower if I did. They didn’t do a TF3 but here’s the TF4 results. I’m going to speak with them again tomorrow to see if I can get a TF3 test.
Sorry forgot to say I have an under active thyroid 😄
Ok, let’s back up a little so that we’re both on the same page. You have underactive thyroid, autoimmune?
If you’d have stopped taking Levothyroxine your TSH would have climbed higher. Your FT4 is extremely low, I would not be well with that range, not well at all. So, it would be very interesting to see what your FT3 is. I’d try and get a private test done to see you he full picture.
What’s your understanding of your condition, how the feedback loop works, what the role of TSH, FT4, FT3 are and what happens when you start taking Levo.
I only ask so I don’t ‘teach’ you how to suck eggs 😂 However, based on your post and your response to my message, I am concerned that you’ve got some wires crossed and that’s no surprise, our medical professional don’t teach us about the condition for which the prescribe the medication, probably because they know very little about it. Let me know if you need more info 🤗
Yes that is correct, I was diagnosed when I was 11 and they started me on levothyroxine. I stopped taking levo when was about 22 as I felt terrible and gp said there was nothing wrong with my levels and tests so I spoke to this private dr who suggested that I took Metavive IV, Bovine Thyroid Complex 80 mg (90 Capsules) the-natural-choice.co.uk/Me...
I am still currently taking Metavive IV, Bovine Thyroid Complex 80 mg (90 Capsules) and nothing else, apart from multi vitamin. 4 years later I still don't feel well and my symptoms are than ever.
Honestly, I can't get my head around the feedback loop and what it all means 😂 I thought I understood some of the terms but it's a lot to take in even though I have had it for so long now.
I am hoping they would refer my to endocrinologist when I speak to them again tomorrow.
Thank you for your help again, I will see if I can get those results and actually get the help I need from my doctors.
Ooo I see! I’m not sure I’d be happy having an underactive thyroid and taking that product 😬 Ofcourse I can’t be sure but it doesn’t really look like it fits the bill. No wonder your FT4 is so low. You really need to know your FT3 result to see if that’s in any way adequate. But given that you don’t feel great, I think it’s time to look at other sources. If you didn’t feel well on Levo, do you know if they actually ever gave you enough? If they don’t give you enough replacement, you can be left feeling like you’re still hypo.
The hypothalamus is a small gland in our brain, it’s like our thermostat, sensing the bodies needs, hormones, temperature, sex, mood ect
It sends TRH (thyrotropin releasing hormone) to the pituitary gland. This is a message system, telling the pituitary to send a message to the Thyroid, in the form of TSH (thyroid stimulating hormone)
The thyroid receives the message and sends out the hormones thyroxine, the hypothalamus senses how much is in our system and the message system starts all ver again. In fact it never stops. It’s like our heating systems, we set it to a certain temperature, what’s optimal for our needs and likes and the boiler switches off and on throughout the day to maintain that desired temperature.
When our thyroid begins to fail, the message system gets more insistent and we see this in the blood tests when we measure TSH, the pituitary sends out higher and higher amounts because the hypothalamus has detected that we don’t have enough thyroxine in our system. So if the range is (0.35-5) on most TSH blood tests and our numbers are above 5 and our FT4 is lower in range then we know the thyroid is failing to do it’s job. We have become hypo.
The reverse of that is hyper and a simple TSH is going to show a very low in range result but a very high FT4. For example, I’m hypo and I began to feel unwell when my TSH was 2.5, but no further tests done for years because it was still in range. I finally started Levo treatment when my TSH was 10. My sister on the other hand had hyperthyroidism, her TSH was 0.003 and her FT4 was 59.
When we start any sort of treatment, we are interfering with the feedback loop, our hypothalamus doesn’t need to send any messages because we are (hopefully, but not always) optimal, so the TSH remains low. This is where GP’s get confused, because low or out of range to them, means danger, your patient is going to have heart problems and osteoporosis. This is not true because our FT4/3’s are in range. But still they have little training in understanding and so they give us bad advice.
Hypothalamus
^
TRH
^
Pituitary
^
TSH
^
Thyroid
^
Thyroxine
^
Breathing
Heart function
Nervous system function
Body temperature
Cholesterol level
How easily you gain weight
Brain development
Moisture in the skin
Menstruation
^
Hypothalamus
^
Pituitary
^
Thyroid
On and on the loop goes, switching on amd off until, in our case it breaks 🥳
That's a really good way of explaining things. Well done! It would be really good if GPs had a 'hand out' (detailing what you have written above) as they do with so many ailments these days, that they could give to patients presenting with an under or over active thyroid problem. 👍
Thank you. 😊 It really helps me too, I’m still learning and there’s so much to learn that I need my basic understanding to be solid because when I am faced with the professionals, I feel overwhelmed and insecure about my knowledge, they really have a way of patronising and being condescending.
It's horrible the way they can do that, isn't it! I'm sure they don't mean to but they rarely take the time to explain things to us. With my last Rheumatoid Arthritis telephone appointment, my consultant was running really late with his morning surgery so rushed me through and at the end said 'Oh I'd better just check your blood results... Oh, your inflammatory markers are up...but that's probably just your Arthritis!' and with that he was gone! The markers are there to show we still aren't getting on top of what's going on! Duh. He's a nice man but I felt so frustrated...! Groan and moan over. That's another good thing about this site is that we can vent our frustration without anyone pulling a face at us...well, even if they do we can't see it...so we're non the wiser in that respect! Keep smiling. 😀
Oh you are good, I’m never so patient with the medical people I meet, they drive me insane and I detest them 😂 What’s the point in going to Uni for so long and not practising your learnt knowledge or even continuing your learning throughout your career, seems like a mammoth waste of time.
I'm really good at standing up for other people, but I'm absolutely hopeless at doing so for myself! It's my fault entirely that I didn't do so. I could kick myself afterwards. You are absolutely right about medical staff who don't stay up to date...especially in fast moving fields of medicine. Some of our GPs are the same and it's so frustrating. Take care, 🙂
Wow that was an amazing explaining and can’t believe I never know there was this loop and how it all affects each other! Wish I knew this sooner so that I didn’t have to go on for so long feeling unwell.
I was really young when I was diagnosed so never asked them what my levels were tbh. I would 100% ask now but at the time I didn’t think I could do anything about it as they said I was fine and my levels were good. Which actually made me feel really unheard and made to feel like I was a hypochondriac.
Also now I have signed up to patient knows best I can see all of my new test results etc.
I am going to get my FT3 done and will share with everyone soon ☺️ Thank you again!
So your Ft4 is too low - suggesting under medicated
But TSH is very low - most GP’s think this means over medicated
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
How much levothyroxine are you currently taking
Which brand of levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
When were vitamin D, folate, ferritin and B12 last tested
Low vitamin levels are extremely common on levothyroxine
Frequently necessary to supplement to maintain optimal vitamin levels
You obviously need to get retest
Are you taking your levothyroxine everyday without fail
Are you also taking any T3 or NDT
Taking almost any dose of T3 will suppress TSH…even if Ft4 is too low
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
On day before blood test, split T3 into 3 smaller doses, at roughly equal 8 hour intervals, taking last 1/3rd of daily dose approx 8-12 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Hi there,
Thank you for your response.
I stopped levothyroxine about 4 years ago and started taking Metavive IV, Bovine Thyroid Complex 80 mg (90 Capsules) the-natural-choice.co.uk/Me...
Test was done early in the morning, however, they never asked me to not have food before doing the test, so I did have breakfast.
I always take my 2 x 80mg of metavive before food as soon as I am awake.
When I was on levothyroxine I was taking 125mg. Brand was actavist and was always prescribed the same brand.
I am currently taking multi vitamin supplement.
I had these done last week and the results of my serum folate is in range at 8ug/L and my b12 is 591ng/L also in range. I didn't get vitamin D or ferritin done but will get these done too.
I very very rarely ever forget to take my medication and I am not currently taking any T3 but I am only taking NDT at the moment.
I will get a retest and additional suggested tests thank you for your advise, its much appreciated and really helpful.
🙂
I am not currently taking any T3 but I am only taking NDT at the moment.This is a contradictory statement. Prescription-strength NDT contains T3. So, when you take synthetic T3 or NDT, you will be taking T3. Prescription-strength NDT contains a fixed ratio of T3:T4.
Metavive, however, is not NDT.
Metavive is a supplement with no known or declared hormone content so cannot be compared to prescription NDT such as Armour or Erfa Thyroid.
It would seem that taking Metavive is not enough for your needs, and that you would instead benefit from prescription NDT or a synthetic T3+T4 combo.
Multivitamin supplements are not recommended as they often do not contain enough vitamins/minerals, and also tend to contain the cheaper versions which may be poorly absorbed. So, if deficient (confirmed by testing), it is advisable to take each vitamin and mineral as separate supplements.
Hi there, thank you for your response 😁
I see! I don't think I understood all of the terms to be honest, I thought what I was taking was NDT 😅
So does levothyroxine contain T3 + T4? I never felt that great on levo which is why I stopped and started myself on Metavive IV, Bovine Thyroid Complex 80 mg. However, 4 years on and still don't feel well. At the time, I remember asking the gp and they wouldn't or couldn't prescribe me Armour.
Ah that makes sense, I should get the vitamin results back soon, thank you for your help
Sorry for not being clear, it´s not an easy subject
Strictly speaking, NDT refers to a prescription only drug made from dried porcine thyroid glands. They have a standardised hormone content. Most contain 38 mcg of T4 and 9 mcg of T3 per grain (60 mg).
Levothyroxine sodium drugs contain T4 only which has to be converted to T3 by the body.
Metavive is sold as a glandular. That means it is not measured for hormone content. Which could explain why you developed hypo symptoms on it. You probably need to take a prescription-strength drug with a standardised hormone content.
Since I don´t know what your levels looked like on levothyroxine only, it is not possible to say if you were on enough or if there was room for an increase before deciding levo did not work for you. Many people are kept undermedicated on levo as doctors don´t know which labs to requrest and, even if they do, they don´t always know how to interpret them. Just being anywhere in range is usually not enough.
So, you basically have two options: go back on levothyroxine, and increase it until your TSH is 1 or lower, your FT4 in the upper part of range, and your FT3 levels at least midrange. That could work, provided you convert enough T4 to T3. That requires good vitamin and mineral levels (there is a lot of good advice here!) Some of the most important ones include vit D, vits B, iron/ferritin, selenium, and zinc.
Or you could try to combine synthetic T3 and T4, or take prescription-strength NDT. Thyroid-S is available online and does not require a prescription. When I say it is prescription-strength, it means that, although it does not require a prescription, it contains a standardised amount of T3 and T4 (9/38 mcg per 60 mg/1 grain pill). So it will yield more predictable results than glandulars.
The advantage of prescription drugs is that you always know how much of each hormone you are taking.
NDT (like levothyroxine and liothyronine) is a replacement drug; it replaces the hormones your body is no longer making so helps manage hypothyroidism. Glandulars, on the other hands, are like supplements; they are not intended to manage disease.
Hi 😀 thank you for explaining this to me and you have been so helpful with this information. This forum has been a blessing and so much more information than anything I have read or heard from the gp.
I don’t think they ever did a test for FT3 ever so I will be pushing for that as it would be interesting to find out and in the meantime I think I will ask to start levo again just to get me feeling a bit more alive.
Also do you think it is likely they will refer me to endocrinologist if I requested it?
Thank you again 😊
I´m not sure how it works in the UK so I hope others will chime in, but I think you should be referred to one if you want to take T3. Many endos however will not prescribe it, so you had better ask for members´ advice about open-minded endos in your area so as not to waste your time and money.
I wish all doctors would be more open minded to it and I am based near Brighton, so any recommendations of endo in West Sussex would be great 😊
Why not just add another metavive 111, as 2 capsules would be a bit low for someone at your stage IMO. Although it is a glandular I would expect to see an improvement with 3 to 4 capsules.
Someone recently (on the forum, sorry can't remember who) used the notion of a seesaw to explain how TSH and thyroid hormone levels work.
If thyroid hormone levels, Free T4 and Free T3, are low then TSH will rise.
If thyroid hormone levels are high then TSH will drop.
However, from a patient's point of view, if they have just the right amount of thyroid hormone why would TSH be high? It doesn't make sense to me, but doctors think that a mid-range to high in range TSH is proof that a patient isn't over-medicated. Instead what it really means is that the patient is struggling to live on too little thyroid hormone all the time!
Hi there,
Thank you for this explanation and love the notion that really helps.
I think I am starting to understand but please correct me if I am wrong, so if my TSH is very low according to the test and my FT4 is also low but in range, could this mean that my FT3 is high and possibly suppressing my TSH?
I will get my FT3 tested and share with everyone very soon 😆 hopefully next week!
so if my TSH is very low according to the test and my FT4 is also low but in range, could this mean that my FT3 is high and possibly suppressing my TSH?
It could be, but you'll have to test to find out.
There are some people who have low Free T4 and high Free T3 along with low TSH. Some of the possible reasons for this that I can think of are (and I am not claiming this list is complete or even accurate) :
1) Under-medication of hypothyroidism and your body is frantically trying to convert as much T4 to T3 as possible.
2) TSH is produced by the pituitary. But there are conditions in which the pituitary is not capable of producing sufficient TSH for the patient's needs. Doctors often appear to pretend that the pituitary is always perfect and never goes wrong, which is nonsense. No organ in the body is always perfect in everyone.
3) A dodgy pituitary which is unable to produce sufficient TSH leads to a condition called Central Hypothyroidism. With this condition the patient's hormonal needs should be monitored on the basis of Free T3 and Free T4, not TSH, because the TSH is not reliable.
4) Poor levels of essential nutrients.
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