So here are my current results, taken at 8.50am before food or medication.
TSH 1.49 0.38-5.50
T4 14.4 10.00-18.70
T3 4.5 3.5-6.5
Serum iron 10 9-30
Serum ferritin 105 10-291
Transferrin 17% 15.00-50.00%
B12 460 211-911
Folate 16 5.4-20
Last results taken back in March
Tsh 0.52
No t4 or t t3 were taken back then
Serum iron 8
Serum ferritin 118
Transferrin 13%
B12 436
Folate 13.8
I’m still taking Aristo 200mcg no t3 currently.
Iron, selenium, b complex with folate, vit d with k, zinc, magnesium, elderberry complex, and d mannose. I also take
I’m still hopelessly tired and I’ve had a few heart palps. Digestion has been awful and I’ve had a terrible uti in last 2 months.
Any advice welcome if I can help myself more I will. Gp says don’t increase iron more and stay in same dosages.
I was taking sytron oral liquid for low iron but upsetting stomach so been taking x4 spartone and he told me not to take more than one, even though they only contain 5mcg of iron .
Thank you in advance.
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Cheekycharlie1981
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I never take any supplements near my thyroid meds. Most of them are taken in the evening, except my b complex and elderberry and d mannose, but none in the morning near my thyroid meds or iron.
I try my best to take iron alone away from anything that will effect it absorbing.
Most of the supplements are recommended on here, igennus b complex is one.
I take a complex containing d, k2, magnesium zinc and boron by Barefoot nutrition not too long before bed.
Though I do have single dose of all of the above also.
T4 ranges are 10.00-18.70
I I’m not sure on the unit for b12, I only have the ranges.
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.
Your TSH is a little higher than where most people would feel best, your FT4 is 50.57% through range and your FT3 is 33.33% through range. These all show that you are probably undermedicated and may benefit from an increase in your Levo, your FT4 and FT3 could also be better balanced.
Serum iron: 55 to 70% of the range, higher end for men - yours is 4.76% through range
Transferrin Saturation: optimal is 35 to 45%, higher end for men - yours is 17%
Ferritin: recommended to be half way through range - yours is 33.81%. Some experts say that the optimal ferritin level for thyroid function is 90-110ug/L
Blind Freddy can see that your serum iron and transferrin saturation percentage are a big problem and your GP should be trying to find a solution for you. I think your iron is causing you problems.
Symptoms of iron deficiency can mirror or coincide with those in thyroid disease. They include:
◾Persistent fatigue
◾Pale skin
◾Shortness of breath
◾Headaches
◾Dizziness
◾Heart palpitations
◾Dry skin
◾Brittle hair and hair loss
◾Swelling or soreness of the tongue or mouth
◾Restless legs
◾Brittle or ridged nails
**
B12 460 211-911
This reference range is probably for units of measurement pg/ml or ng/L (they are both the same). In that case your level is on the low side.
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
I think it might help if you change your B Complex. The Igennus Super B contains Vit C and this can keep the body from using B12, so you may not be getting much, if any, B12 from your B Complex.
You could do one of two things:
1) Change B Complex to another good, bioavailable brand without Vit C. My choice is Thorne Basic B.
2) Supplement with B12 sublingual lozenges along with a B Complex (not Igennus). This will give your B12 a quick boost to get it above 550. Just use one bottle of B12 with the B Complex, once the B12 is finished then carry on with the B Complex alone.
When I used B12 is used Cytoplan which contains 2 forms of active B12 - methylcobalamin and adenosylcobalamin:
Your Vit D complex contains 4,000iu D3 I believe. I don't know whether this is an appropriate dose for you as you haven't given a Vit D result. Vit D should be tested twice a year when supplementing, aiming for a level of 100-150nmol/L which is the level recommended by the Vit D Society and Grassroots Health, with Grassroots Health's recent blog post recommending at last 125nmol/L. D3 is fat soluble and any excess is stored so can lead to toxicity, which is why we need to keep an eye on our level when supplementing.
I take a complex containing d, k2, magnesium zinc and boron by Barefoot nutrition not too long before bed.
Though I do have single dose of all of the above also.
Do you mean you add additional Vit D, K2 in addition to what is contained in the Vit D Complex? If so exactly how much extra are you taking?
Thank you for all that, what increase would you suggest in Levo? 25mcg? as the Aristo only comes in 100 mcg in the uk, or that is all I can source. I don’t fancy trying to break the tablets as they crumble very badly.I don’t want to start mixing brands, not with the issues I have had with fillers and lactose.
I only take the barefoot complex alone not any additional ones.
I was just saying I have them as separates which I might take instead. I was trying to reduce costs as I spend more than I earn on vitamins.
I do have separate b12 to hand but only the Viridian one, I stoped taking this a while ago.
Vitamin d should of been done but gp messed up.
The iron I have been battling for years and I constantly get told I’m in acceptable range in regards to my storage, clearly you know and I know I’m not. But I get no help and I’m scoring points on your list big time. Any help with what the gp should be doing as he seemed happy I’d increased on my storage levels.
Thank you again, sorry if I’m not on the ball, my 3 year old is constantly back chatting. I can’t think.
As far as I am aware Aristo only comes in 100mcg tablets so you have no choice but to find a way to take a lesser dose. Increases in Levo should be no more than 25mcg at a time. If you get a pill cutter or craft scalpel and cut the 100mcg tablets in half, then take an extra half alternate days that gives you the extra 25mcg daily, I doubt you'd need more than 25mcg. If you don't want to cut them then the only alternative is to take one extra 100mcg tablet every 4th day. As Levo is a storage hormone, many people are fine with taking extra this way.
As for the Viridian B12, I've looked it up and it seems to contain methylcobalamin and adenosylcobalamin so it will be fine. I would use this (plus a B Complex) to get your B12 over 550 then you can use just the B Complex on it's own.
Your GP needs to gen up on iron. Ferritin is the iron stores but you can have normal ferritin level but low serum iron levels. This could be a "false normal" ferritin because you can be iron deficient and have infection or inflammation which would raise ferritin level. Have you had a full blood count to see if you have anaemia?
If humanbean is around, she's very good with iron.
I might look to the 100mcg every 4th day. I had no anemia the last few times I was tested, last time I was, was during second trimester. That was both b 12 and iron and I argued for the bloods to be done and that was hospital care for you. I felt like the walking dead. Yes I’m gluten free and no dairy at all.
Seasidesusie why does the body need more Levothyroxine? Stupid question maybe. Is this because my body is getting worse at making any hormone itself? I know my thyroid gland had got a lot smaller after pregnancy. Will this just get worse? 222 mcg will be the highest amount of Levo I’ve ever taken.
Also I’ve had full bloods done before to look at inflammation markers but nothing has ever shown. I don’t know how I’d try and argue I’ve got something effecting my iron. I assumed it was always my poor gut, which I try and help but does not vastly improve, despite hours of research.
I suffer very extreme histamine intolerance, I’ve had a recent flare. And I’ve currently constant heartburn.
Yours has been at best 5% of the way through the range, so optimal is just not even in sight at the moment. But you should be aiming for roughly 55% to 65%, being female.
Ferritin
Optimal is given as
• Low level virtually always indicates need for iron supplementation
• High level with low serum iron/low saturation indicates inflammation
or infection
I think that inflammation or infection is one possible cause of your poor results. If this was the case then your results would be showing Anaemia of Chronic Disease (aka Anaemia of Chronic Inflammation)
People on this forum often feel at their best with a ferritin level of roughly 50% - 75% of the way through the range. In fact 50% might be a bit low for many people.
With the reference range you've been given this would be roughly 150 - 220. So you have a quite a long way to go.
Transferrin
• optimal is 35 to 45%
• higher end for men
So, again, with results of 13% and 17% you really need to be aiming for about 35% to 40% or a little over, so you have a long way to go.
...
I’m still hopelessly tired and I’ve had a few heart palps.
With very low iron you are at risk of getting tachycardia and chest pain if it gets bad enough. The NHS barely acknowledges this.
Note that people might not be anaemic even with extremely severe iron deficiency under some circumstances. Iron deficiency needs to be treated whether you are anaemic or not.
Some links, in no particular order, that are of use in understanding iron, ACD, anaemia, ferritin etc
One thing I haven't mentioned so far, which is extremely important, is that your extremely low iron and your stomach and digestion problems could be an indication that you are losing blood from somewhere in your digestive system.
I know it sounds disgusting, but is there any chance you could try looking at your poo closely? If you see bright red blood (like you'd see after cutting your finger) in it this could be piles and isn't usually a serious problem.
If it has darker red or maroon blood in it you need to tell your doctor urgently because it means the blood is coming from further up your gut - could be from your bowel or your intestines and it has been partly digested.
If your poo has black granules in it that looks like coffee grounds then that is an indication that you are bleeding in your oesophagus, your stomach or high up your digestive tract, and it has been completely digested. The higher up your digestive tract blood has come from the more digested it will be and the darker/blacker the result will be. This is also something that you must tell your doctor urgently. In fact you should probably go to A&E or dial 999.
But even with this level of scrutiny might not detect blood from the digestive tract because it could be there in tiny particles that can't be seen or identified with the naked eye. You could ask your doctor for a kit for testing for blood in your poo. The problem is that the test used by the NHS for checking for blood in poo is (or was - it may have changed since my experience of testing) a very poor test and it is (or was) easy to get a false positive or a false negative.
See the following post and follow the instructions on it to get the best chance of getting an accurate result.
Note the sources where the info in that post came from have since been changed quite substantially since I wrote that post, so perhaps more modern tests are better than the ones from the time that I wrote it. (I did an FOBT test in about 2012 and got a false negative - I could actually see lots of blood. The cause - a very large bleeding polyp - was finally found in 2013. I wrote the post about it and got the suggestions on how to avoid false positives and false negatives from other sites in March 2017.)
I'm going to post this now, but I'll post more in another reply.
Thank you for that, a lot to take in. I’ve had low iron since I can remember, it’s nothing new.
A little history, in my early twenties I bled from my bowel for over a week, the hospital was not concerned due to the blood not being dark. I had awful pain, never felt so I’ll. with this I had allergic symptoms.
So 3 years after that I had a full examination to the rear and nothing found apart from a small narrowing in my bowel.
A few years after that I had a camera into my stomach, tiny polyps were found, no cause for concern.
I’ve been poked and prodded a lot.
So today I’ve been classed as having histamine intolerance which basically is a condition I’ve little control over apart from diet and tablets. It makes me have awful diarrhoea, sickness etc. This only happens every few months but totally immobilises me.
I’ve had full bloods done left right and centre, nothing shows up of interest.
I’ve now no gallbladder since 2017, again had scans and looked at before and after surgery.
I’ve a fisher and tiny piles from pregnancy. I get a little blood when my fisher splits.
I’ve not noticed any dark blood, I do get dark stools from the iron I take and also bile build up.
Gp doesn’t seem worried about my iron and are very slack, I’ve had to beg for medication. I’ve asked for iron infusions, and an endocrinologist refused and would only do another Endoscopy.
I’m not sure what to do or where to go. I’ve helped my b12 by supplements and I have had b12 injections in the past. But the iron nothing much. Gp only cares about stores and say they are fine. Even the endo attacked me rudely and said what’s my worry.
A few years after that I had a camera into my stomach, tiny polyps were found, no cause for concern.
One thing to point out to a doctor is that polyps anywhere in the stomach/gut/bowel can grow. Just because they were small doesn't mean they will always stay small.
I’ve had full bloods done left right and centre, nothing shows up of interest.
If you're anything like me, "full bloods" means they did a Full Blood Count.
If you haven't got access to your full medical record including blood test results then you should get this, either online (if your surgery has the facility) or send in a Subject Access Request.
For info on your rights to access your medical records see posts and replies by our forum guru on the subject :
Assuming that no blood is detected in your poo, I think you have to fix your digestive system in order to be able to tolerate iron supplements and absorb your thyroid hormones and your supplements. And from your description I'm assuming that you have inflammation in your digestive system, and possibly a stomach or duodenal ulcer.
If you are getting pain from your gut, some comments and suggestions...
1) It would be a good idea to get tested for Helicobacter Pylori.
2) A common cause of gut problems in thyroid disease is the fact that many of us end up with low stomach acid. This can lead to all sorts of consequences, including inflammation, pain, poor absorption of nutrients, and poor absorption of thyroid hormones.
The commonly suggested solutions for this - increasing the acid in the stomach by artificial means using vinegar or betaine hydrochloride - cannot be recommended if you have an ulcer or gastritis. Imagine sticking an acid in a bad cut or sore or on a mouth ulcer. Any ulcers or gastritis must be treated. I don't know how the NHS treats this now. But the first thing you have to do is to reduce your own production of acid to an absolute minimum to give any ulcers or gastritis a chance to heal. The usual way to achieve this is to take PPIs.
They are often prescribed to people for far too long and coming off them can be an unpleasant experience. It would depend on your doctor and your reaction to the PPIs how long you had to be on them.
I know that PPIs have a very bad reputation - which is completely justified because they do have adverse effects. But if your gut has ulcers and inflammation it must be healed before anything else happens. Some of us end up having to take PPIs for life because damage has been allowed to go on for years and even when the damage has been treated the healed stomach lining is never the same as it was before it got damaged.
If everyone who had indigestion was told to add acid to their stomach from the very first time it happened, rather than taking drugs to neutralise the acid or to stop the production of stomach acid we wouldn't end up with the levels of gut damage found in people who have thyroid disease. (Although that suggestion doesn't work if the gut is painful because of something like stomach cancer, which has happened to one member of the forum.) I got my first problems with indigestion in my teens, and had a duodenal ulcer in my 20s. I've also been diagnosed with gastritis. I'm now several decades older and I have to take PPIs all the time. Having to take daily NSAIDs doesn't help either.
b) Give up gluten 100%. You don't have to be coeliac to benefit from giving up gluten. Apparently about 85% of people with thyroid disease are gluten-intolerant but only 5% are coeliac.
c) You could ask for testing for SIBO. I don't know what the chances are of you getting it though. The NHS is the organisation that likes to say "No" to everything.
d) I've never come across anyone who is histamine intolerant before. I do remember looking into it very superficially a long time ago and thinking it was a very difficult condition to cater for. So, sorry, I can't help with this.
e) It really helps if you understand how your stomach works, and what the effect of low stomach acid is. I found this particular set of articles very helpful :
The above link is to the first article in a series of 6. You can get the whole lot in an e-book you can download. The instructions for doing this are part way down the page. It's a bit of a slog but is well worth reading in my opinion.
If you can fix your gut sufficiently to allow you to tolerate iron supplements with a reasonable amount of iron in you have lots of options to choose from.
I wrote this reply to someone on the subject - ignore the stuff about pregnancy :
As that link says, the good news is that you don't need to rely on your doctor to get iron supplements. To get prescription-strength ones you can buy them from UK pharmacies, with the pharmacist's permission, without a prescription.
Any supplements which don't require a prescription can be easily bought in pharmacies, supplements shops, online supplement stores, Amazon, Ebay etc.
Be aware that improving iron can take a very long time. It took me nearly two years because I had a lot of ground to make up and I absorb iron poorly.
It is possible to get a private iron panel done with a finger-prick test using this company :
If/when you ever buy one of these tests you will have to give up iron for a week before the test, and fast for 12 hours (overnight is best obviously) before producing the blood. Ask for advice on when to do the test and how to post it before you do it.
Thank you for all that advise. I think what I’m going to do is compile all this together and then send it to my gp, reasons why I might be like I am and tests and solutions I’d like to try. I feel talking to them in the phone is no time to get across what I need to in 10 minutes. Histamine intolerance is awful as it conflicts with the healthy diet for the thyroid.
I’ve to watch what I take, probiotics I do take but certain strains are bad for histamine intolerance. I also take aloe vera tablets. I was on the betaine tablets actually but stopped as did not seem to help. Though I did think they helped to start, but at times increased the heartburn as obviously not enough fats and protein to break down.
I used to take ppis when I was younger for about 4 years made me feel rubbish. I stopped them and I’ve managed since, yes I get gut pain which feels like ibs but I managed the heartburn to occasional. The heartburn has really come back recently but I’ve had uti and kidney infection and my guts been a mess from antibiotics.
I’m not sure why it’s flared up again, it’s trail and error with what I take.
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