I should start by telling you that Ft3 and Ft4 were taken a week apart. No, that’s not strictly true. Blood was drawn for all tests at the same time but for some unfathomable reason the lab decided to omit TSH and Ft4. On speaking to GP a few days later she siad it was common practice to omit requwstwd test, agreed this was insane and ordered a re-test. However, said it wasn’t necessary to take the whole test again as there was unlikely to be any great disparity between thyroid hormones in such a short space of time as a week
I’m not sure I agree but what do I know and I wonder your thoughts are. I take a combination of porcine and bovine glandulars, feel well, now sleeping better but still gaining weight after a period of relative stability where the problem with weight was not so much gaining it but shifting it. I started losing ounces but it levelled and now it’s creeping up
I know it’s not possible to see if I convert well given the glandulars I take contain both T3 and T4 and I know it would be possible to raise my T4 if I include more bovine (contains more T4 and I think I’m allowed to state this as I’m not revealing the brand) but that would surely suppress TSH further. It’s clear I need more of something before I become clinically obese but what?!! You’ll see my nutrients are reasonable to good and overall my iron isn’t too bad, though ferritin could do with further increase. Vit D not tested because always mid-high and I’m any case I take a maintenance dose that included K2
Both sets of tests were conducted between 8.15-8.30am on an empty stomach, having taken final dose 10-10.30 the previous night. No supplements whatsoever for a week prior though I know it’s necessary to exclude only biotin
I’ve included one photo and will send the second in a separate mail as only one at a time can be included, as far as I can work out
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For an accurate picture of thyroid hormones it makes sense to do all the thyroid tests from one sample, I don't agree with your GP, and I've never heard that it's common practice to omit requested tests (I think maybe she's talking out of an orifice other than her mouth 🙄)
As your glandular contains T3 as you say it's not possible to see if you convert well, you'd need to be on T4 only for that, but it doesn't matter because you're taking T3 exogenously so your test is basically measuring that.
Your nutrients do all look good and a good iron panel.
With those results, and basing on my own personal experience (which may or may not be appropriate for you), I'd need FT4 much higher so how do you do that? Add in some Levo or add in some more bovine glandular but keeping an eye on your FT3 level in case that goes too high.
For an accurate picture of thyroid hormones it makes sense to do all the thyroid tests from one sample…
I would’ve thought so too but to be fair, I’ve often read of Ft3 being requested and labs refusing. Apparently they’re doing it with other tests now which seems a rather dangerous, ludicrous, waste of time and money practice, if the idea is a cost-cutting one. In the round it has cost more time and money because I’ve had to increase the carbon footprint to get there and back, the cost of the phlebotomist, lab and GP. To call it insane doesn’t even begin to cover it and how can we possibly ascertain the whole picture if crucial tests are arbitrarily excluded
With those results, and basing on my own personal experience (which may or may not be appropriate for you), I'd need FT4 much higher so how do you do that? Add in some Levo or add in some more bovine glandular but keeping an eye on your FT3 level in case that goes too high
That makes sense to me and worth a try. It should in theory I suppose nudge my Ft3 into the upper third and my Ft4 within range at least. Hopefully if I can achieve that, that might be the end of it in which case trying to maintain it will be the challenge. Of course, it may not be that simple and should it be that I require Ft4 much higher, then that will be tricky
This new luxury of sleeping better feels so good that I don’t want to upset it but I’ve got to lose some weight before it creates other problems, so I’ll go especially low and slow with the increased to try to hold on to that sleeping pattern
So, the rhetorical question is - because I don’t expect you to decide for me: levo or more bovine glandular
I know it’s not possible to work out whether I convert well but can I presume that some of the T4 in a glandular will be converting to Ft3 because if this is the case, adding levo would make more sense because the T3 composite in a glandular will automatically increase my Ft3. Is that a fair assumption? And again, if that’s the case I’ve answered my own question!
I’ve often read of Ft3 being requested and labs refusing. Apparently they’re doing it with other tests now which seems a rather dangerous, ludicrous, waste of time and money practice, if the idea is a cost-cutting one.
Just to show how different areas are with these things, I'm in Wales which is worst in the UK for certain things health-wise, although we do have free parking at hospitals but at what cost to other services?
Anyway, I was invited for my regular liver function/kidney blood tests last week (back to regular intervals now after the problems the pandemic caused with GP surgeries). When the surgery phoned to arrange this I asked what tests would be included and wasn't surprised to hear that thyroid was being done as I had refused this back in November. I always get TSH, FT4 and FT3 and the FT3 is included because my TSH is always suppressed. Anyway, the HCA who took my blood said would I like any other tests included 😮. She suggested cholesterol and I said no I wasn't bothered about that but I wouldn't mind having ferritin included as it's usually low. So she duly added ferritin 👍. I haven't yet picked up my results, I'll arrange that next week, so it will be a nice surprise if they've done that also.
So, the rhetorical question is - because I don’t expect you to decide for me: levo or more bovine glandular
I know it’s not possible to work out whether I convert well but can I presume that some of the T4 in a glandular will be converting to Ft3 because if this is the case, adding levo would make more sense because the T3 composite in a glandular will automatically increase my Ft3. Is that a fair assumption? And again, if that’s the case I’ve answered my own question!
If you're happy with the glandulars, why not increase the bovine for now and see how it goes. If you don't get the desired effect then consider Levo.
Great that you were offered additional tests and knew what to ask for. It would be so helpful and ultimately more cost-effective if that was the general approach. It might mean that more patients could be diagnosed earlier and treated more appropriately, thereby being less of a “nuisance” and drain on the NHS. Imagine that! Let’s hope the offer of the ferritin test doesn’t turn out hollow otherwise what’s the point
If you're happy with the glandulars, why not increase the bovine for now and see how it goes. If you don't get the desired effect then consider Levo
Overall I’m happy with them so that’s a very good suggestion and exactly what I’ll do. I’ll increase very gradually, keep careful watch, using how I feel as guide and then re-test as it’s useful to have statistics for future reference
Thank you for taking the time to share your thoughts and suggestions
It would be interesting, if a bit nosey, to hear if the test was done
I'll try and remember to let you know. It will be interesting to see what the level is if it has been done as I did a Medichecks iron panel this week (4 days after the GP ferritin test) so I'd like to compare the ferritin results even though I know the ranges are different. I knew I'd not get an iron panel with the surgery but that I may get ferritin.
And I’ll try to remember to ask then! I presume, even though ranges are different, that you’ll be using the percentage method to work out the comparison. I also presume that because it’s ferritin, the levels won’t have moved much, if at all in those four days
I picked up my results today and ferritin was included 👍
She did include lipids test even though I said not to bother as it was only done 5 months ago. All excellent and stable there (I have no problems with this).
For some reason FT3 wasn't included this time, the lab normally does this as my TSH is always suppressed.
As always, vast difference between GP and Medichecks ferritin test even though units of measurement are the same - ug/L.
08/04/22 - GP test at 9.30am and fasted- 49 (15-300) = 11.93%
12.04/22 - Medichecks at 8.45am and fasted - 73 (13-150) = 44.38%
I am very dubious about the Medichecks level firstly because my iron panel showed that iron and saturation had plummetted from my normally pretty good levels, and my CRP is never very low and always shows some inflammation so I expect this to be reflected in ferritin as well. GP test didn't include CRP.
The last time I got a GP ferritin test was in 2018, 2 months after a Medichecks test and results were almost identical - GP was 47 (11.43%) and Medichecks was 74.7 (45.04%).
You got what you didn’t want and not what is crucial! Will you have to request a separate Ft3 test?
Re Medichecks, seems a fair assumption they’ve got it wrong given all the other info you have but it must cast a little doubt as to how things are going. You say in 2018 it matched the NHS test, which, all things being equal, you’d expect if both tests are broadly accurate. Do you think latest test is just a one-off mistake or are Medichecks less reliable at the moment?
No, I'm not bothered. Looking back at my historical results, I've come to the conclusion that because my FT3 has been done so many, many times alongside TSH and FT4, and only very occasionally it's been excluded, then maybe it's the actual person doing the test deciding, one person may include it and another may not. But it really doesn't bother me unless the GP wants to argue about my suppressed TSH (luckily I didn't get the dreaded phone call this time) and then I'd go into full "test my FT3 then" mode. I do regular Monitor My Health tests so I keep an eye on my full thyroid results myself.
Re Medichecks, seems a fair assumption they’ve got it wrong given all the other info you have but it must cast a little doubt as to how things are going. You say in 2018 it matched the NHS test, which, all things being equal, you’d expect if both tests are broadly accurate. Do you think latest test is just a one-off mistake or are Medichecks less reliable at the moment?
Sorry, the way I worded this gave a wrong impression:
The last time I got a GP ferritin test was in 2018, 2 months after a Medichecks test and results were almost identical - GP was 47 (11.43%) and Medichecks was 74.7 (45.04%).
It wasn't that the GP and Medichecks ferritin results were identical last time, what I meant was that back in 2018 there was the same difference between GP and Medichecks as there is this time and the GP result last time is almost identical as this time - 11.43% and 11.93%, and Medichecks were also almost identical both times at 45.04% and 44.38%. I know what I mean in my head but sometimes it doesn't aways come out right written down 🤣
At least one other member has noticed this disparity between Medichecks and GP ferritin tests, she was in communication with Medichecks but I don't think there's ever been an explanation that really explains it.
I know what I mean in my head but sometimes it doesn't aways come out right written down 🤣
Sovery true! Can’t tell you the number of times I’ve re-read my own post and had to edit. Have you noticed how much time is wasted since becoming hypothyroid on trying to remember things and doing things twice having forgotten you’ve already done said thing?
Thank you for clarifying the misunderstanding. So, you’re dubious about Medichecks, as is at least one other member. Interesting and worth remembering
Oh, so much wasted time going over things. I even look at simple words and query my spelling (and I was always a brilliant speller!). Even the word THE doesn't look right sometimes! And even missed words when I'm writing a response, I've said it in my head but it just hasn't appeared in my message.
So, you’re dubious about Medichecks, as is at least one other member.
I don't know whether you're aware of this from last year:
Ah no, really?!! I had no idea. How bothersome. As if this thyroid business isn’t difficult enough already
I even look at simple words and query my spelling (and I was always a brilliant speller!). Even the word THE doesn't look right sometimes! And even missed words when I'm writing a response, I've said it in my head but it just hasn't appeared in my message.
All of the above, me too! I asked my husband the other night how to spell share, it looked all wrong on the page and as for missing out words, that’s become a real problem. My son now refuses to read my “nonsense” texts
Not an important point... But I wish the NHS wouldn't refer to "Iron Overload Studies" when a patient has an iron panel. Why not just call the group of tests "Iron Studies"? By calling it Iron Overload Studies it suggests that they rarely, if ever, test iron fully in cases of anaemia and only carry out the test in cases of haemochromatosis which means that many people will never be treated properly for whatever their iron and ferritin levels are.
But I don't understand the logic of never giving someone an iron panel if they are suspected of being anaemic because anaemia can be caused by several different things, and how do doctors know what to treat if they don't know what causes the anaemia? For example, low B12 and/or low folate can cause anaemia. So can low iron and low ferritin. There is no point in giving a patient iron when they are suffering from anaemia caused by low B12.
I vaguely remember a member on here getting worried that they had had one of these and assumed that she must have Iron Overload but couldn't see anything in her iron related results that was over or under range to suggest it which made her even more anxious because she thought she was unaware of a problem. (I don't remember if the member concerned was actually anaemic or iron deficient.)
I’m inclined to agree. It seems an badly thought out name which gives the wrong impression and causes confusion to patients. I’m hoping the medical professionals aren’t confused by the name though because it would be terrifying to think that they use the test only for those suspected of anaemia! Surely they wouldn’t …
I was thinking they were using the Iron Overload Studies only for people with suspected haemochromatosis (iron overload), and not using it on people with suspected anaemia.
I had assumed it was to get an overall more accurate picture of iron status rather than iron overload but what do I know humanbean and as my head teacher was fond of saying: never assume, it makes an ass (of) u (and) me
You’re probably right but I hope you’re wrong because if they are using it only for suspected overload then that’s deeply worrying
Let's hope that the bundle of iron tests is just badly named and it is used more often than I'm aware of.
I've suffered from low iron, or iron deficiency, or anaemia most of my life. I bought as complete a set of my GP medical records as I was allowed a few years ago, and I can't find a single iron studies test result in the whole lot. This shocks me.
I sent you a pm about 2 days ago and I'm not sure if you received it since technical glitches occur on the forum here and there.
Noel, a low dose of t4 around 12.5mcg could possibly be of benefit.Whether that would require a slight reduction of t3 in the glandular or maintaining the same amount I wouldn't know. Hope you feel better. I hope you dont mind me starting a conversation with humanbean
It is shocking but it seems we shouldn’t be surprised. I take it you’ve managed to raise your iron because you say, most of your life and if so, well done because so many of us find it difficult to do so
It is shocking that you can’t find a single test but we shouldn’t be surprised. I take it that you’ve managed to raise your iron because you say: most of your life … if so, well done because many of us find it difficult to do so
Difficult to unravel this so let's look at the following first -
TSH 0.06
FT4 9.2 (10.5 - 21.0)
You don't say how much of the granulars you are taking to return these results.
Do you know how much T4 and T3 you are taking in your current porcine and bovine glandular combo?
You won't!
Consequently, you don't know how much hormone you are taking
That is not the easiest way to replace thyroid hormones and I'm surprised your GP didn't make that clear
You are gaining weight...symptom of undermedication
Your FT4 shows that you are undermedicated...but why?
Taking supplements is not the same as taking replacement hormones which are bio identical....you are setting yourself up for failure as your labs suggest.
Low TSH with low FT4 suggests a pituitary problem however some of your previous labs don't really support this!
Identifying conversion status has nothing to do with taking granulars it is judged by comparing FT3 and FT4 labs when taking T4.
High FT4 with low FT3 = impaired conversion.
Your FT4 is already low and we don't have an FT3 ( measured at the same time) so on that basis we cannot analyse conversion status.
It is also possible that your FT3 level is far too high...this can cause suppressed TSH with low FT4
I need high dose T3-only because I have a form of thyroid hormone resistance, and have similar labs.
Why are you taking glandulars?
What does your GP say about your choice of taking glandulars?
Your dosing regime is doing you no favours!
Sorry to be blunt but you need to reconsider your treatment so that you know exactly how much hormone you are taking.
Taking replacement hormones is not a dip into pick and mix!
I would suggest you start by having a full thyroid test
Many of us test privately to ensure we can test TSH, FT4, FT3, vit D, vit B12, folate and ferritin all at the same time and under the correct conditions/ timing.
You already know you have Hashi's so testing again won't change that.
Thank you for your thoughts and suggestions DippyDame
Blunt and to the point is fine but I beg to differ; at least partially because at one time I was doing really well on glandulars (so called because they’re the whole thyroid gland, freeze -dried, of a pig or cow) and lost a significant amount of weight and then nucleotides were added. Since then I’ve tried various dosages and brands, bumble along ok and feeling well despite lack of sleep but weight is always the issue even though until recently it was only a stone. It seems that fairly soon I’ll be tipping the scales at 12st and although being 5’7.5” mitigates somewhat, I still look full-term pregnant because I have skinny limbs. I really do look peculiar and if somehow the weight could be more evenly distributed I’d be happier. Sigh
My GP has been supportive all the way since explaining that I prefer the idea of glandulars knowing they’re trickier to control. Six months ago she prescribed levo to try adding in (or not) to see if that helped enable better sleep and also she some weight but in the end I didn’t bother and I’m any case her suggestion on how to take it met with derision on here and it was clear she didn’t really understand. I’ve kept them and if I find that glandulars really aren’t working for me any more despite giving them a good shot (so far about 5 years I think) then I’ll either switch to NDT or try the levo, lio or both route
You are gaining weight...symptom of undermedication
Agreed
It is also possible that your FT3 level is far too high...this can cause suppressed TSH with low FT4
Do you mean that it’s possible it’s far too high for me or too high per se? If you mean for me then I agree, it’s quite possible but having said that I’ve been over range in the past
Your dosing regime is doing you no favours!
Why is that? Can you clarify please?
Yes I’m gluten-free and it definitely helps reduce the bloating I experience. It seems to make a difference in more subtle ways too. Somehow I feel “cleaner” without it. Difficult to explain
I think for a period of time I’ll do as SeasideSusie has suggested and add some more bovine (contains more T4). If it doesn’t help I’ll have to think again but you’re right about pick and mix, it’s not for the faint-hearted or those wanting a quick fix (which I’d love but know it’s not possible for me) but I’ve made glandulars work in the past and I’m not quite ready to give up. I’ll keep increasing the dose very slowly and hope eventually to reach the amount that tips the balance. I realise I may fail
Thank you again for giving your time. Please read assured it hasn’t fallen on deaf ears
I recognise how fortunate I am that I’ve never felt physically unwell but I started to go slightly mad at first; the sheer misery of being unable to sleep drove me to a despair that felt like madness. No one suspected thyroid disease and when the hyper period passed and I began to put on weight the whole episode was put down to menopause which again,, no one had suspected, not even me and why should I have, I was only 41 but the female hormone test proved it. So there we arę then, no need to look any further. And no one did
I can identify with the frustration and difficulty in getting a diagnosis that can be acted upon so that wellness stands a chance of being achieved
Not until almost two decades later and through finding this forum, finding Dr Peatfield, were my suspicions confirmed. By now, through researching on the internet I began to consider I might have thyroid problems
The only one sensible test my endo did a couple of years ago was to carry out a test that precluded a pituitary problem. Can’t remember what that’s called but while I’m at it, what’s the test that diagnoses hormone resistance and is it simply T3 alone that has helped you?
I'm not a medic or an expert and can only refer to my own experiences so my comments are just that, comments....not advice.
You may not be but thank goodness for you and people like you who can offer insights and suggestions. I hate to imagine where I’d be now otherwise. So thank you. Thank you very much
You're welcome!I'm glad you had the pituitary function test to eliminate a problem there....your labs pointed to the pituitary, but I suspected that was a temporary red herring!
No test for RTH just a long slow process of eliminating other possibilities.
Yes, I need high dose T3-only to function...the last resort.
Patience, determination and a huge amount of reading!
Based on my medical ( and family) history it looks as if I've always had the condition but although having been diagnosed hypo over 20 years ago it was only after I became very unwell and medics had no idea why, that I started to "dig".
I was convinced that there was an answer...
A geneticist did once suggest that the cause may be an as yet undiscovered genetic variant..."we just don't know".
Because, first I was not treated, then I was wrongly, treated for so long it's unlikely that I will ever fully recover from the damage done, but many of my most debilitating symptoms have either resolved or decreased.
I'm grateful to be able to function reasonably well now...I have reached age 76!
My mother died suddenly aged 64, in retrospect her symptoms suggested an undiagnosed thyroid condition...as did her mother's symptoms. She was bedbound for many years.
Had I not discovered the problem my body would most likely have continued to shut down with the inevitable consequence
But, I never felt " not human". I was convinced an answer must exist..... but I had some very dark moments and did feel extremely unwell!!
The support and guidance from this forum has been a life saver.
It has messed up my life big time but I'm one of the lucky ones I guess....
I'm still here, lucky to have a supportive family... and ranting about it at length in the hope it might help others!
Sad beyond belief and shocking too what happened to your mother and her mother then you too, almost. Scandalous also that it’s still happening. Doesn’t bear thinking about how many of us would be in desperate straits, that if this forum and others like it didn’t exist. I can’t believe that in this enlightened era, those who are supposed to know, how backwards some of them are and to think that we put our trust in them to help guide us out of sickness
Let’s not think too much about it, it’s frightening and feels like the dark ages sometimes
But perhaps we should think about this. It’s a given that being well nourished is essential for good health. When if ever did your GP ask, now Mrs Smith, what’s your diet like? It’s said many times on here that doctors don’t get the training for that aspect of our lives. Well, we should be deeply worried that they don’t because as long as they ignore the relationship between food and health, preferring to dole out medicine instead, then the medical establishment is dangerous. I know it’s not as simple as that and even the best nourished become unwell but I think you know what I mean
I should add that I’m not anti medics, we need them and there are some truly good ones but it’s shocking that in Britain, in 2022, too many of them are keeping us ill and dare I say it, some actually make us ill
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