I'm new to Health Unlocked, this is my first post.
What do people think about my doctor's thoughts about my thyroid blood test results.
The short version of my story is:
I've been taking levothyroxine since 2012. My blood values in 2012 before starting medication were:
TSH 4.42 (range 0.30 - 4.20 mU/L)
FT4 13.5 (range 12.0 - 22.0 pmol/L)
I'm currently taking 125mg levothyroxine and my thyroid numbers are:
TSH 0.06 (range 0.55 - 4.78 mU/L)
FT4 14.59 (range 11.5 - 22.7 pmol/L)
So my TSH is currently suppressed, and as the FT4 is in the normal range the doctor is refusing to prescribe 125mg anymore, she's prescribed me 50mg instead.
My current doctor doesn't think I should've been put on levothyroxine in the first place though.
Based on what I'd read on this website I said to the doctor that I'd like to try and increase my FT4 towards the upper part of the normal range, to see if that helps my symptoms.
Since I started on levothyroxine all of my FT4 numbers have been in the lower half of the normal range. The highest number I ever got for FT4 was 16.8 (range 12.0 - 22.0).
However my doctor says that as my TSH is currently suppressed and very low that that means my body will not achieve a higher FT4, i.e. that my body is happy with a FT4 of 14.59 and doesn't need to go higher.
Symptoms - extremely drowsy everyday, increasingly so since year 2000, unrefreshing sleep, very stinky wee!, dry skin, irritable because I feel like I've been up all night. No muscle fatigue and no muscle pain. I've had 2 sleep studies which were fine, no problem. I've had no clear diagnosis despite 16 years of visiting doctors.
Iron related numbers 6 months ago:
Ferritin 20 (range 22 - 322 ug/l)
Haemoglobin 137 (range 135 - 175 g/l)
Haematocrit 38.7 (range 40 - 50)
I've taken iron supplements the last 6 months, new values:
Ferritin 94
Haemoglobin 146
Haematocrit 42.9
No noticeable change in symptoms though after taking the iron supplements for 6 months. My doctor doesn't seem interested in whether the initially low numbers are a clue as to what might be wrong.
I've been vegetarian for 30 years.
Doctor says that I'm healthy and that if I relax and stop trying to find out what the problem is then maybe I'll feel better. Grrr.
Any thoughts? I kind of feel like giving up trying to get a diagnosis, after seeing doctors for 16 years, but then I'll be resigning myself to feeling shitty for the rest of my days.....
Thanks
David
Written by
davidlee72
To view profiles and participate in discussions please or .
OK. Your free t4 is still low in range even on levo and yet your levo has been reduced. It's highly unlikely that your free T3 is optimal with such low free T4. Your TSH is not an accurate guide to thyroid health when you are on meds - it is likely that the feedback loop between hypothalamus, pituitary and thyroid is broken. Your ferritin is much better now, but why was it low - did you have investigations by gastroenterology? I'd give up on your doctor and self-medicate. You could try the reduced dose for a bit, but I doubt it will make you feel any better
No I haven't had any gastroenterology investigations. It's hard enough getting a doctor to test for something like Vit B12 let alone something that expensive!
I've been tested for Celiac before and they told me that was all clear. No bowel issues.
As for causes of low ferritin, I've no reason to think I have internal bleeding. If it was as something as serious as that I was thinking that it would've been picked up by now.
Iron deficiency anaemia is possible but if that was the cause of my symptoms I would've thought that I'd feel better having increased Ferritin levels from 20 to 94. As for Pernicious Anaemia I took a load of high quality B12 5,000mg tablets with no effect so I ruled that out.
My GP wouldn't prescribe iron when I had under range ferritin without sending me to gastroenterology first. I'm pretty sure that they are supposed to do that for men and post menopausal women - and internal bleeding isn't always picked up routinely. But if you don't feel better, it is more likely to be your low in range thyroid hormones regardless of what GP says - Occam's razor. You have low free T4 and hypo symptoms, what is the most likely cause?
Few drs would suggest dropping Levothyroxine from 125mcg to 50mcg!!! She just wants you to see someone else and so you should. You have lots of good advice below x
Your ferritin is still very low, that will not be helping you to feel well! For reference I keep mine in the 200’s to feel ok. I would say you need to supplement which I’m still figuring out myself but hopefully someone with more experience will be able to help you, just wanted to say don’t give up, there are some amazing people on here who will be able to advise x
I read that a ferritin of approx 90 - 100 would be the perfect level, and that a level significantly higher than that long-term can be bad for your health. Not that I'm an expert or anything.
Men can have higher iron levels than women, but I wouldn't want iron too high. I'd want to know WHY I was anaemic as, if the cause isn't fixed, it'll just come back when you stop supplementing.
Whether a diagnosis of anaemia would be correct for a Ferritin of 20, Haemoglobin of 137, Haematocrit of 38.7? Based on what I've read I think there's a good case for saying yes, but doctors will often dismiss these levels, as broadly speaking they're only slightly out of the normal range or just within it.
If I was anaemic then no I don't know the cause. However if I supplement for 6 months and my ferritin level is now perfect and haemoglobin and haematocrit at a more reasonable level, but no change in symptoms, then should I just discount anaemia as the correct diagnosis?
My GP is happy with my ferritin, she is very good on correct levels so I would maybe do some more research, of course everyone’s opinions are different and I have pernicious anemia so that may play a part. But your levels don’t look right to me so I wouldn’t give up trying to find the cause, as I learnt the hard way no one will fight for your health but you! I hope you manage to get some answers x
David, you will need to test TSH, fT4 and fT3. I suspect your pituitary is underperforming, putting out too little TSH. Not full secondary hypothyroidism but just a little low. This has consequences and would show up as a low TSH and low normal fT3 and fT4. With an fT4 of 13 or 14 we would expect TSH to be quite high IF fT3 is also below about 4.5. If your fT3 is high normal i.e. about 5.5 then your doctor is correct but I'm sure this won't be so.
You will need to either persuade your doctor to test TSH, fT3, fT4 or pay for a private test.
Those values were when taking 125mg of levothyroxine.
I've only been tested a couple of times for FT3 over the years, but the number was broadly in line with FT4, in terms of where it was within the normal range, e.g. when FT4 was at its highest at 16.8 my FT3 was 4.2 (range 3.1 - 6.8 pmol/L).
It's guesswork, but with my current FT4 of 14.59 maybe it's not unreasonable to assume a current FT3 of around 3.8 - 4.0.
Your TSH shouldn't be as low as 0.06 when your fT4 is 14.59 which is well below half way. This might happen if your fT3 is high but I feel sure it isn't so hence the need to test fT3 as well.
You can't estimate like that, you need to test and free T3 is the most important test. The free T3 results you quote show you are a rotten converted (assuming free T4 range was the same) FT4 47.32% and FT3 29.73% of their ranges. So that means that your free T3 is probably around 10% of range now as your free T4 is only 27.59% through range.
I tracked down the only other time that my FT3 was tested. It was done in March this year. The numbers look a bit better than the other FT3 test I wrote about which you replied to - that was from 2014 and was FT3 4.2 (range 3.1 - 6.8) and FT4 16.8 (12.0 - 22.0) .
The test in March 2018 was done when I was taking only 75mg levothyroxine.
TSH was 1.176 (range 0.55 - 4.78)
FT4 was 13.75 (11.5 - 22.7)
FT3 was 4.49 (3.5 - 6.5)
So not brilliant. But comparing it to your calculations of my other FT3 test, the T4/T3 conversion rate doesn't look as bad.
So the FT3 was 33% through range.
FT4 was 20% through range.
Do you think that is still a bad conversion rate? Albeit a bit better than the previous test.
Your doctor is an idiot and a disgrace to the medical profession! Where did she get her qualifications? In a packet of washing powder?
OK, so when you started levo, your TSH wasn't sky-high. But, you were still hypo - you're hypo when it hits 3! She obviously has no idea about that.
So, you're taking 125 mcg levo but your FT4 is still well below mid-range? So, the question arises, how do you take your levo? Do you take it on an empty stomach and wait at least one hour before eating or drinking anything other than water? Do you take any other supplements or medication at the same time as the levo? Do you leave at least four hours between the levo and the iron tablets?
Your ferritin is very low, and that could be causing a lot of your problems. But as you're veggie, that's nor a total surprise. What I'm wondering is, have you had your vit B12 tested? Because that's often a huge problem for veggies, and B12 deficiency will cause a lot of hypo-like symptoms.
Then again, if you're taking iron supplements, and your ferritin is still only 20, and your FT4 still low, we do have to wonder about your absorption. Do you have low stomach acid? Do you have Coeliac disease? Leaky gut? Seems like something's wrong somewhere.
So, what you need next, is full thyroid testing, to get a fuller picture of what's going on:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
I'm also wondering about your pituitary. Such a shame that they didn't test the FT3 when your TSH was 4.42. Because your TSH was pretty low considering your FT4. Testing the FT3 could have confirmed or refuted central hypo. Because it looks as if your pituitary might be having trouble secreting TSH. Have you ever had any other hormones tested?
I take my levothyroxine in the morning on an empty stomach. I always wait a minimum of 30 mins before eating anything although it's usually more likely to be an hour. I always wait an hour before having any coffee, and at least 4 hours before taking iron supplements or any other medication.
My ferritin is now 94, after 6 months of iron supplements. It was 20 before I started the supplements.
Doctors are often reluctant to test B12, I can only find one test for it, a few years ago it was 221 (range 160 - 925 ng/L), but last year I got through a bottle of 5,000mg methylcobalamin B12 sublingual tablets, together with folate supplements, but no noticeable change in symptoms.
I have the current TSH and FT4, they're 0.06 and 14.59 respectively. I don't know the current FT3.
TPO and TG antibodies were negative.
Vit D has been an issue, like half the population. It was 30 at it's lowest, but I've been taking liquid drops of Vit D3 everyday for about a year now so I'm hopeful that's no longer an issue.
If my TSH is low and suppressed but the FT4 is still quite low, I'm wondering about whether it's possible to increase the FT4 via diet and supplements, e.g. iodine, selenium, zinc, iron, etc? Although I've read some comments that messing with iodine supplements could be a bad idea.
You can't increase free T4 except by taking thyroid hormones. It is faintly possible that you are iodine deficient (but don't assume it) and so that taking L'tyrosine and iodine would give you the building blocks for thyroid hormone. But if your hypothalamus or pituitary aren't working correctly, you won't be able to use them - and taking iodine when you don't need it can trigger autoimmune thyroiditis even if you didn't have it before. Your results before diagnosis suggest that might be the case. Why not just buy your own NDT and treat yourself if you are not able to find a doctor with a clue?
Having done a lot more reading the last 24 hours I've committed myself, in my head at least, to trying T4/T3 combination therapy.
I'll wait for my blood test results in 2 weeks time, but then I'd like to start after that (I have a good idea what the blood test numbers will be anyway!).
The chances of me getting a prescription for NDT or synthetic T4/T3 are practically zero.
So I've found a website in the Far East that offers Thyroid-S NDT, plus a couple of other NDTs.
The usual question.....but are you able to tell me where you buy your NDT from? I've read that that info can only be sent to me by private message. If you're happy to do that that would be very useful.
Naturally there's a bit of apprehension about self medicating, buying from overseas without a prescription, etc.
It would be better if you could always wait an hour before eating.
221 for B12 was very low, but only what one would expect for a non-meat-eater. However, you should take the B12 continually - 1000 mcg sublingual methylcobalamin - because if you stop, it will just go down again. And, you should take a B complex with it, not just folate, because the Bs all work together and need to be kept balanced.
You absolutely need to get your FT4 and FT3 tested together to find out how well you are converting.
Just because antibodies were negative on one test, doesn't mean you don't have Hashi's. You can rarely rule it out completely.
Half the population may have low vit D, but that doesn't make it OK for you. You are hypo, and your needs are greater. We don't care about the others.
It is impossible to increase the T4 by diet and supplements. You can only replace a hormone with a hormone. And certainly not with iodine! Messing with that is a very bad idea. You could have iodine deficiency, you won't know unless you get it tested. But, my guess is that you are hypo because your pituitary is not producing enough TSH to stimulate your thyroid - there's probably nothing wrong with your thyroid.
Increasing your nutrients might help with absorption of thyroid hormone - because you do also have an absorption problem - but if you can't absorb the nutrients very well, that's not going to work, either. Ideally, your stupid doctor should be investigating your gut, rather than reducing your dose by a rediculous and dangerous amount - but I would like to know her reasoning behind the cut. If you can't absorb 125 well enough to raise your FT4, how does she think that cutting it to 50 is going to help?!?
One of the great mysteries when investigating my health issues myself has been when trying to ascertain what blood levels are normal, low or high!!
I feel like pulling my hair out sometimes.
So if I have a Ferritin of 20 and it's just within the normal range every single doctor I've encountered would say that that value is normal, even though it's apparently in the bottom 3% of the population.
Then you read forums/articles which say 20 is very low and 90 is much more optimal.
It makes it very difficult to pin down where my health issues might come from.
Anyway, so my B12 level of 221 was within the range of 160 - 925. However I read that because you can't overdose on B12 the upper range is set extremely high, i.e. 221 being relatively low in the normal range is misleading and that 221 is fine (I still supplemented on top of this level later though).
So, and obviously with no intention of sounding snotty, but why would 221 be classed as very low?
Regarding my doctor, her view is that an FT4 of 14.59 is perfectly fine, in fact because it's in the normal range she described it as optimal. To her I'm absorbing fine, the FT4 doesn't need to be higher. If my FT4 was 12 she'd be happy with that.
She's previously suggested coming off levothyroxine altogether, as she believes the thyroid has nothing to do with my symptoms. I mentioned to her that my previous doctor said that stopping levothyroxine altogether, even if it turned out that I had no underlying thyroid issue, was out of the question and that I could have heart problems later in life if I did. She disagreed. I erred on the side of caution and carried on taking the levothyroxine.
Out of interest what sort of gut investigations would you have in mind?
Once supplementing - B12 produces skewed results. The blood test result contains both bound and unbound B12 - and ONLY 20% of your result is able to reach the cells where it is needed. So is only a guide. Read the book - Could it Be B12 ? - by Sally Pacholok - also a movie by the same name on You Tube. She mentions a level of 500 to prevent neurological issues. Yes B12 when very low can become a neurological issues if left un-treated. Also MS - Parkinsons - Alzheimers - often patients with these conditions have LOW B12 and VitD.
My Story :- At 27 I was diagnosed with Gut TB and after six months in hospital and several operations my Terminal Ileum was removed. Now that is the area where B12 is absorbed/metabolised for its return to the liver for storage. No-one mentioned this at the time - some 45 years ago - and I live with the consequences. Spinal issues that required de-compression surgery and very numb lower legs and feet. My shoes are my feet ! Yes walking is a pain !
Often when people offer advice/suggestions here - they do not mention their own experiences that have given them the knowledge to respond in an informed way. I rarely mention mine - but hey ho - today is the day !
Scroll down in the above link to view the neurological signs of B12 Deficiency. Also the Videos - under the heading Films in the menu. You will then understand what Docs do not understand. GP's today have to follow Guidelines and adhere strictly to ranges - but sadly they are not aware it is WHERE you are in the range that creates a wealth of health. Modern medicine is not about preventative medicine or about creating health - we are after all customers of Big Pharma ....
Quite so. I have a problem with B12. I get neurological symptoms when my blood levels look quite decent - poor balance, numb feet and facial tics. My father had pernicious anaemia - I don't, but I wonder if I inherited some sort of B12 utilization problem, so don't assume that just because your blood levels are in the hugely wide normal range, they are OK for you.
Quite possibly. I have read that the testing for PA often produces false negatives and testing needs to be done more than once. Do you have injections ?
One of the greatest problems we have is that doctors know a) nothing about nutrients and b) can't read blood test results. Your ferritin is much too low, but they don't realise it. One of our golden rules is to never listen to a doctor on matters of nutrition. Ask here.
It doesn't matter whether B12 is water-soluble or whether or not you can over-dose on it, the problem is that results under 550 can cause irreversible neurological damage. So your B12 needs to be at least over 550.
Nothing your doctor says makes any sense because she so obviously knows nothing about thyroid. Your FT4 would be fine if your FT3 were up the top of the range - which could happen - but as she doesn't even test it, she has no idea what she's talking about. And very few doctors know anything about hypo symptoms, so I wouldn't listen to her on that one!
As for your gut, start with your stomach acid. Read this article:
You could also try going gluten-free, see if it makes you feel better. There are tests for Coeliac disease, but they are notoriously unreliable. And they wouldn't tell you if you were gluten-sensitive, anyway. It could be that you are and that you've developed a leaky gut. but the best way to find out is to stop eating gluten for a while. There are more invasive examinations, but I would recommend trying the easy ones, first.
I don't know too much about NDT but I have read some things that make me edgy about self-medicating with it, e.g. quackwatch.org/01QuackeryRe...
Back on the question of FT4, if I can only increase FT4 with thyroid hormones aren't I a bit stuck? I've read that a suppressed TSH long term is bad news for your health. So if I can't even maintain my current level of 125mg of levothyroxine because the TSH is suppressed, let alone increase the levo, then presumably I'm going to be unable to increase the FT4 any higher than now?
*sigh* quack watch, sciencebased medicine etc - all shills for big pharma and the status quo. They'd rather get someone prosecuted for disagreeing with them (happened to a friend of mine) than have patients getting well. They take some evidence and ignore the rest - having forgotten that science is all about being proved wrong as well as right and there are many things we don't know or haven't yet discovered. NDT was THE prescription for hypo from the discovery of thyroid hormone until the 70s or so. It has had fewer recalls for poor quality than levo and is still the main thyroid treatment in many areas. Studies (like those diogenes has been involved in recently) show that people of levo alone don't get the levels of free T3 needed for good health and are often still symptomatic when TSH is low. But it is cheap. Suppressed TSH does not matter if free T3 is in range - get Dr Toft Pulse article from TUK and give to GP. No one has done a study on suppressed TSH that differentiated between suppressed TSH in hypothyroidism with in range free T4 and free T3, and suppressed TSH caused by hyperthyroidism. But there are studies that show that low free t3 is an indicator of failure to recover for cardiovascular problems. If your pituitary or hypothalamus is not functioning correctly, your TSH can never go high. You have to choose whether to feel hypo or take your chances with low TSH.
Ok thanks, so in a nutshell if you were me do you think I should ignore the TSH values, try to get my hands on more levothyroxine and NDT/T3 meds and gradually increase the meds until the FT4 and FT3 are in the upper part of the normal ranges? Or until I feel better, which ever is sooner.
I totally think you should ignore the TSH - I do. And it would be a good idea to get your hands on something - but just one thing at a time. First of all, I would recommend you get full testing for thyroid. And then see where to go next.
Ok I've ordered the Advanced Thyroid blood test from Medichecks and will take it from there.
I think I've come round to the idea of ignoring TSH for the time being and possibly taking some T3 or NDT, but first things first I'll wait for the results of the blood test.
My TSH has been suppressed since 2007. At times, it's even been undetectable. I have taken levothyroxine throughout that time and my FT4 has been in the high teens or low-to-mid-twenties.
My TSH is low because I have secondary (AKA central) hypothyroidism - that is, my pituitary is not producing enough TSH, which is in turn leading my thyroid to be underactive. In these circumstances, as others have said, TSH is an irrelevant test. You really do need both FT4 and FT3 to be tested. It can be challenging to persuade the doctor of this, and even if she goes alone there is no guarantee that your local pathology lab won't choose to decline the test anyway.
You might want to look into having blood tests done privately. Thyroid UK recommend a number of companies who do this - look under About Testing on their homepage menu.
Just before I got your message yesterday I ordered a private medical test with Medichecks, and then today I've ordered some Thiroyd NDT from overseas, so it's been an interesting few days doing lots of research and taking on board comments.
Obviously I won't start NDT until I have the results of the blood test, and will do more research about how to switch from levothyroxine to NDT, about supplements, etc. but I think I've tried levo on it's own for long enough and read enough comments about NDT to think that it might help improve my current situation.
I missed out one important thing from the original post. And it's the one thing that spurs me on to not give up on the idea that my thyroid might actually be the reason for my ills.
A few years ago when I was taking 125mg of levothyroxine, around the time when my FT4 was 16.8 and TSH suppressed at 0.08, I read about how you should take levothyroxine on an empty stomach.
My doctor at that time had previously said it didn't matter when or how you take levo, you can have it with breakfast if you want, as long as you take it in the same way every day.
Anyway, in the end I decided ok I'm going to try taking it on an empty stomach. After a couple of days I started to get hyperthyroidism symptoms, palpitations, my mind was haywire, thought I was losing my marbles. It was so bad that I just had to stop taking levothyroxine altogether. From memory I think I stopped taking it for a couple of days and then reverted back to 125mg with food.
However the interesting thing was that after the high of the hyperthyroidism, and then after stopping the levo for a couple of days, I then felt cured! The only time in 15 years I've felt fixed. My drowsiness was gone, I had deep refreshing sleep, my libido was back, having one alcoholic drink didn't make me feel like death warmed up the next day, etc.
Unfortunately after about 5 days my old symptoms came back.
The point is that my feeling is that maybe I just hadn't quite got to the right thyroid levels for me. I'd gone too high, into hyperthyroid, then on the way down I'd hit my ideal level, before going down to a hypothyroid level.
Maybe the amount of levo that would have made me well was somewhere between 125mg with food and 125mg on an empty stomach.
I hope that make sense.
I've described this incident to 3 doctors and 1 thyroid specialist but they didn't find it particularly interesting or relevant. My GP at the time just laughed and said that if you overdose on any medication lots of strange things can happen, and disregarded it.
Strangely, whereas back then going from 125mg with food to 125mg on an empty stomach sent me hyperthyroid, nowadays I take 125mg on an empty stomach with no hyperthyroid symptoms and an FT4 of only 14.59.
Well, first of all, as you're hypo, you cannot 'go hyper', it's a physical impossibility. You can be over-medicated, but not knowing your dosing history, it's hard to say. You're not over-medicated now, obviously.
The thing about taking it with or without food is that thyroid hormone - both T4 and T3 - will bind with certain elements in your food. Your doctor was half right and half wrong. If you decided to take it with food, not only would you have to always take it with food, but you would always have to have exactly the same things, and the same amount, for breakfast. Otherwise, the effect would be that you never got the same dose two days running.
Did you start on 125 mcg right from the beginning? Or did you work up to it slowly? In any case, if you were taking it with food, and then suddenly took it without food, the extra hormone absorbed could have been a shock to your symptom, causing the symptoms you experienced.
You then stopped taking it and felt better, well, that always happens. No-one knows why but for a while, people stopping their levo will feel absolutely brilliant for a short while, and then the symptoms come creeping back. I know, I've done it myself. So, none of that proves anything about anything. It was just what one would expect to happen doing what you did.
No I didn't start on 125mg, I built up gradually. I didn't realise that people often feel better temporarily after stopping levothyroxine. Good to know.
You are getting some fantastic advice from people that have been there and got the t-shirt, at least look in to what they are saying. Your Tsh should really be ignored, despite what gp will tell you it is extremely unlikely that you will have heart problems or brittle bones from suppressed tsh, the numbers you need to concentrate on are t3 and t4, plus assorted vits.
In an ideal world no one would have to self medicate but gps know very little about thyroid problems and sometimes self medication is the only way to feel better.
Regarding ferritin (iron stores) and the level it needs to be for good health...
There are websites galore that mention ferritin needing to be 50 or 70 or 90 or 100 - 120. This kind of information is really pointless without a reference range.
I'll give you three results that I got for my own ferritin a few years ago :
Note that units of measurement are all μg/L.
Result 1 : 21
Result 2 (6 months later) : 67.7
Result 3 (8 months after result 2) : 41.5
Based on the numbers it looks like my results improved a lot then got substantially worse again. But numbers without a reference range are deceiving and misleading. If I give you more info :
Result 1 : 21 (13 - 150)
Result 2 : 67.7 (13 - 400)
Result 3 : 41.5 (13 - 150)
The reference ranges are not all the same, so what conclusions can you draw? If I add yet more info :
Result 1 : 21 (13 - 150) Approx 6% of the way through the range
Result 2 : 67.7 (13 - 400) Approx 14% of the way through the range
Result 3 : 41.5 (13 - 150) Approx 21% of the way through the range
If you look at how far through the range a result is as a percentage you can see that my results were constantly improving (albeit very, very slowly). Result 2 was near to the supposed optimal level of 70 but was only 14% of the way through the range.
If someone quotes a ferritin level and says it is what you should be aiming at then I don't think it is very helpful unless you have the reference range it is based on.
One of the commonest reference ranges used for pre-menopausal women for ferritin is 13 - 150. The most often quoted level to aim at is 70. If we put those two bits of info together, a result of 70 with a reference range of 13 - 150 is very approximately 40% of the way through the reference range.
For post-menopausal women and for men the optimal level is said to be a bit higher but I don't know a specific level.
I've read the comment (can't remember where) that modern medicine just accepts that pre-menopausal women are usually a bit anaemic and this is normal for them. I don't like this logic but then I'm not a doctor or a scientist, I'm a woman who struggles to hang on to iron and has been treated intermittently throughout life with far too little iron when my ferritin has got low or my haemoglobin has got low. I've had supplements lasting a month or two months and that is my lot for another five years. Often my ferritin or haemoglobin isn't even re-tested.
If ferritin drops below about 80 (13 - 150) then some people can suffer restless legs and cramp, and poor hair growth or hair loss, which strongly suggests to me that a level of 70 (13 - 150) isn't that healthy for everyone and they need higher levels.
You'll have to do your own research on all this because there are other (VERY important) issues involved with iron and ferritin.
1) Serum iron can be low when ferritin is "normal" or high. Supplementing might push ferritin higher without having much impact on serum iron. One cause of this is "Anaemia of Chronic Disease (or Chronic Inflammation)", and there are probably other causes I don't know about. Until the cause of this is found and treated then supplementation should be avoided - very high ferritin is poisonous and can deposit iron in places where it shouldn't be.
2) Ferritin can be low when serum iron is high. This can be caused by a methylation (MTHFR) problem. This needs to be addressed before even thinking about iron supplementation - very high serum iron is poisonous and can deposit iron in places where it shouldn't be. It is possible addressing the methylation issue will make supplementing iron unnecessary.
3) If ferritin and serum iron are both low in range or under the range then supplementing is probably safe - but there could be exceptions depending on other medical conditions and problems people have. Research is always essential with iron to be sure it is safe.
4) When supplementing iron, always test regularly - every 4 - 6 weeks - particularly when you have no idea how your body will react to iron supplementation. After a while, when you are confident that you know how your body reacts to iron and you have the test results to prove it, you might be able to reduce the frequency of testing. But never forget that too much iron is poisonous!
5) If you don't maintain iron levels very well then you might have to take a maintenance dose once you've optimised your levels. For suggested optimal levels :
I've ordered a private blood test from Medichecks and then I'll take it from there.
I have to say I get a bit nervous about increasing iron levels too much, as unlike some other vitamins and minerals you can have too much iron, but I'll take your comments on board.
I've noticed that since I raised my Ferritin from 20 to 94 (range 22 - 322) that my hair is growing back more normally so hopefully that's at least a positive sign.
The first thing I would do is ditch that doc and have T3 tested....along with all hormones and nutrients (see below
I guess your T3 may be low, but guessing isn't good enough....it needs to be towards the top of the range.
Post new results here and you will be offered much better advice than most GPs have ever even heard of! I note you refer to having had similar advice from a number of GPs.....not surprising, they are all inadequately taught about hypothyroidism! If it were otherwise this forum would not exist.
Once you have taken levothyroxine TSH results become unreliable/useless as a guide - you need both T4 and T3 lab results - yet most doctors insist that diagnosing by TSH is the way to go. Not so, they cannot pin point the problem and patients become very ill.
Like you I spent very many years trying to convince medics my problems were real - and simply did what I was told because we were brought up to believe "Doctor knows best". I was given numerous scopes, scans, treatments, meds and diagnosed with fibromyalgia.....and expected to get on with it. Eventually I could barely function!
I was told to stop looking for answers and "just be the patient"... blah! blah! blah! That did it! I started to read and research then found this forum and am now slowly recovering!
Do not resign yourself to feeling rubbish for the rest of your life....I'm 73 and only now improving and seeing a brighter future. I guess you are much younger so it's never too late!
I now have an excellent GP but she is not allowed to test T3 - madness- so I had private tests done and now self medicate with T3 only. That, I would suggest, is the last resort after T4 and T4/T3 combo have been tried.
You don't mention Vit B12, Vit D3 or Folate - all need to be optimal. Your problem may lie here. Have you been tested for Pernicious Anaemia? Taking high dose iron orally is unlikely to help this.
A thyroid genetic test showed that I have a faulty gene DIO2 inherited from both parents which means my T4 to T3 conversion is very poor...hence my T3-only treatment.
Without both T4 and T3 lab results you cannot judge your ability to convert T4 to T3. I suspect your conversion may be poor
After posting results here I very closely followed the advice I was given, read extensively and started to self medicate....we shouldn't have to do this but if the NHS can't do it then we have to take control and move on.
There is no one-treatment-suits-all quick- fix solution but with good advice, patience and time you can feel better again.....just don't expect a medic to find the answer!
There are people here much more knowledgeable than I, listen to them and you may be very pleasantly surprised....I was!
Good! No need to be anxious, just take things one step at a time..results first. You are in safe hands here at TUK. The solution may be more straightforward than you imagine....and getting closer by the day!
From personal experience I would definitely suggest testing your B12 again and your folate. However I’ve read a lot that says you need 4 months off any B12 supplements else the results will only show what’s floating around, instead of what is actually usable in your cells. Everyone’s results will vary as will symptoms if you are deficient, so I would agree with the advice to read Could it be B12? and the Pernicious anaemia societie’s book too. Most GP’s do not know much about B12 , so research is vital. Whilst I have an under active thyroid, I have researched B12 a lot more and treatment has certainly helped me. Good luck.
Regarding lab ranges, my mother was a hospital lab director for two locations. I learned from her that lab ranges are based on a “average” of everyone who takes the test. When you think about who is having blood or other tests- you realize that most of the people having them done are not feeling well. Otherwise, why have the test done. So you’ve got ranges for “normal” based on a majority of unwell people. So when doctors or others talk about “optimal” ranges, they are talking about when the majority of people feel healthy. Of course, it depends on the test whether “healthy” should be toward the top or bottom of the range. Unfortunately I don’t believe even doctors realize the ranges are based on the testing of many unwell people. So it’s appropriate to look at “optimal” ranges, rather than just “in the range”. Hope that helps.
Hi David. I've been similar to you for 16 yrs too, wasn't brilliant in the nineties either
I actually only stopped falling asleep in lay-bys and crawling upstairs when I found TUK! 🙏🏻 My results very similar but tsh over 4, am a bad converter for whatever reason
After all it's the converted free t3 going around your bodies that brings wellness. Correct me if I'm wrong
For me, I saw Dr P who also diagnosed adrenal insufficiency, no wonder after dragging around for years, also metavive which is natural t4/t3 from this country but haven't read positive results yet as with ndt
Alsothe high significance of clearing any candida and healing gut as we aren't what we eat, we are what we actually digest 😊 I'm on similar rd, and wish you lots of luck
The endo I've just seen was a lovely chappie who told me I looked so well and to try to not be anxious ...........aaaaagggghhh. Lol. He thinks also I'm over keen on health and wrote as such to my GP !!! I remember thinking he was more interested in the anxiety state and he would have made a good phychiatrist with his ideas, I'm about to write to him and tell him my Medichecks results as my results from him didn't appear
It was So humiliating or is this patronising? Whatever, it's rediculous in the scheme of things to be sent away for another six months and the last straw for me and have to be so grateful that here is where we need to be!
My folate low so upping this, using spray vits where possible so as doesn't go through gut, not forgetting vit C. D B complex fish oil and b12 if needed also magnesium phew, it would be lovely to forget it all but then we pay sadly, we need the piece of the jigsaw
Out of interest, my t4 was quite naturally high in range initially, it's only dropped since taking levo, but no change with ft3 as yet,
now on 75 from 50
- 50 is starting dose I've read a lot. (I couldn't tolerate levo before, so I gather it's ok now because I've improved vitamins, healed gut and supported adrenals ) it does seem to ramp up anxiety feelings for sure
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Do I have a looming/potential thyroid problem
TSH 4.5 Doctor refused to discuss my thyroid function as a possible cause for my symptoms
Problems with Thyroid
So confused by results - should I give up?
