So, am I *NOT* hypothyroid ....?

[CarolineC57]

As I've said elsewhere, I'm now totally confused by the blood test results I've had done by Blue Horizons. Here are the ones relating to my thyroid. I have all the symptoms of hypothyroidism - but my blood test results seems to say otherwise. I'm wondering now if I should pursue some other avenue. Does it look to you like my problems definitely *aren't* thyroid-related? Here are the results which I think are relevant - but I have others, so please let me know if you need to know anything else.

B12 777 ng/L (191 - 663) *

[as mentioned elsewhere, it seems really strange to me that I'm above the range here]

Ferritin 31.5 ug/L (13 - 150)

Iron and UIBC:

UIBC 48.0 umol/L (20 - 62)

Iron 11.0 umol/L (6.0 - 34.5)

Total iron binding

Capacity

59.0 umol/L (45 - 70)

Transferrin saturation

18.6 % (20 - 50) *

[the doc said in his report that I might have mild anaemia - this is *always* the same result when I'm tested for iron. I'm now self-supplementing again]

Folate (serum) 7.7 ug/l (4.6 - 18.7)

Free T4 14.2 pmol/L (12 - 22)

Free T3 4.7 pmol/L (3.1 - 6.8)

Thyroid stimulating hormone

1.680 mU/L (0.270 - 4.200)

[all seem to be within range - a recent thyroid antibodies test I had done showed this to be less than 10, which I believe is fine]

Vitamin D (25-OH) 77.7 nmol/L

<25 nmol/L: Severe Vitamin D

deficiency

25-75 nmol/L: Borderline

ranging to insufficiency

75-200 nmol/L: Optimally

replete

>250 nmol/L: Possible

toxicity, if sustained

[looks like I'm in the "optimally replete" range now - I've been self-supplementing for some time as I was found to be "borderline deficient" a few years ago]

Hopefully, someone here can help me interpret all this. As I said above, if you need to know other test results please let me know as they did quite a few. Thanks!

[marram]

Actually your Free T4 is not even in the middle of the range and your T3 is also what. for me, would be low, being also below the middle of the range. When I had a TSH of 1.4 I actually felt extremely ill, unable even to function on a day-to-day basis while being told the 'numbers' were fine and it must be something else.

With these results, if you felt hunky-dory, then it would not be a problem, but that's actually not what you are saying.

So you can do with an increase in your thyroid hormones. You would probably feel better after a bit more iron, too.

Never assume that a GP who tells you your TSH is fine is actually correct. After all, unless he has a result from when you were healthy, he has not the slightest idea what 'normal' would have been for you.

Marie XX

[CarolineC57 in reply to marram]

Hi Marie - thanks for this. That actually helps me feel more like I am going down the right route after all. Thought I obviously don't want to be hypothyroid, if this is what's causing my health problems then at least I might be some way down the road to finding a solution.

Sadly, my GP has refused to do anything at all with all the results being "normal", so it looks like we'll have to eat into our retirement savings and go private if I'm to get anywhere with this.

Iron has been low for years and years. Various GPs have just told me to take iron tablets but they never have any effect. I think I might have a malabsorption problem but I've no idea why or what to do about that. I am still taking iron though - I don't know if it is having any effect.

[PinkNinja]

I think at least part of the problem is low iron. Supplementing with iron, vitamin c and Vitamin b2 should help with that. That's not to say you don't have a thyroid problem.

It might be that once your iron levels are much better you might feel much better. It might also be that your body is able to use more thyroid hormones (iron is essential for this) This could lower your T4 and T3 and consequently raise your TSH. This may then affect your thyroid results enough that you can get treatment.

Sorry if that didn't make much sense. The bottom line is you need to sort your iron out so your ferritin is around 70-90 and your other iron bloodsare well within range. This will enable your body to use thyroid hormones better and also help you to feel better in other ways.

Carolyn x

[CarolineC57 in reply to PinkNinja]

Hi Carolyn! Sadly, as mentioned in my reply to Marie, my iron levels are always low - they've been that way for many years. Various GPs over the years have just told me to take iron tablets, but they never have any effect. I think I must have a malabsorption problem but I've no idea why or what to do about that. I am still taking iron though - I don't know if it is having any effect. I'll keep taking the tablets, as they say! I'm also wondering whether a nutritionist might be able to help if it is malabsorption problems. My GP isn't a lot of help!

[ribbon in reply to CarolineC57]

Just to say - iron & thyroid levels are interdependent, i.e. you need optimal iron for thyroid to work and your thyroid levels need to be optimal in order to hold on to your iron i.e. absorb it properly. Maybe if you get your thyroid levels up, then your iron will be be better absorbed. That's what happened with me

[CarolineC57 in reply to ribbon]

So it would be a case of sorting out the thyroid first, then the iron might improve? That makes sense!

[ribbon in reply to CarolineC57]

Yes, but to get thyroid up you need to be taking a good amount of iron along with your thyroid replacement. Once thyroid improves, you''ll only need maintenance dose of iron

[catalonia in reply to CarolineC57]

same here Carolyn, I'm on 2 iron tabs a day now, level was 2.9 (2.7-15) and docs did nothing, I'm convinced I don't absorb it, they already know I don't store any excess iron.

[lynn0857]

i agree with the reply from marram. Most people with hypothyroidism feel better if their FT3 & FT4 are toward the top end of the range. The TSH test doesn't give a true indication of what is happening with my T hormones at all. My last test results showed that my TSH had fallen from 1.8 to 1.2 but my FT4 had also fallen from 16.8 to 13.6 & T3 was borderline at the bottom of the range. Everyone's "normal" range is different too so symptoms should always be taken into consideration.

[CarolineC57 in reply to lynn0857]

Many thanks, Lynn - as I said to Marie above, that helps me feel like I am still going down the right route to find out what's happening here (and, hopefully, find some treatment which helps).

[Framboise]

I'm in a similarly confusing place. I was diagnosed by a private doctor when my TSH was 0.49, FT4 low-mid range and FT3 also low-mid range and my results had been like that for several years. Every doctor I've been to since has disagreed with that diagnosis and wanted me to stop taking NDT. I think there are some of us who simply don't fit the standard idea of hypothyroidism and are therefore not recognised through blood tests, so your results don't necessarily mean you aren't hypothyroid.

First though, has your high B12 been investigated? That is something I would want an explanation for and it's worth pushing for one if your doctors haven't looked into it. Sorry if this has already been addressed in another post!

I'd say your ferritin is low and should be round about 80, as I was told by the private doctor when my ferritin was 7 in a range of 5 - 150 and my GP told me it was fine! Also your FT3 and FT4 are low in the ranges and many people don't feel right unless they are towards the higher end.

Good luck in getting to the route of your health issues.

[CarolineC57 in reply to Framboise]

Thanks, Framboise. As mentioned to the others, this helps me feel like I might still be going down the right route to finding out what's going on with my health.

Re the high B12, I've already posted another question here about that. The Blue Horizons doc who interpreted my test said that this was a *good* thing - but I've read articles which say differently. First, high B12 can be an indication of serious health problems (certain cancers, no less). That scared me at first, but then I don't have any family history, or any other symptoms or other indicators of this. To cut a long story short, the only good GP in my practice is away from the practice at the moment, so I think I'm going to wait till I can see her rather than speak to any of the others about this - and, of course, keep a close eye on relevant indicators myself.

The other thing I've read about a high B12 reading seems more likely to me - but I can't remember where I read it. That said that a high level of B12 in the blood can actually indicate that you aren't metabolising it or using it properly - ie. a malabsorbtion issue - so it's just building up in the blood stream. This seems more likely to me as I think I have a malabsorbtion issue because I'm always anaemic (have been for years).

Thanks again, anyway - and, yes, I'm aware of the potential problems of the high B12 reading and keeping tabs on this!

[ribbon in reply to CarolineC57]

serum b12 tells very little. My serum B12 was 642 and my ACTIVE B12 test which is the one you need showed very little being absorbed at tissue level. I have since been diagnosed with Pernicious Anaemia and am on B12 injections. Like you, GP said serum was great etc., but I knew I had symptoms and got my own Active B12 test, which they cannot ignore. You can get it online now, or in Guys Thomas Hospital London. Have a look a the PA (pernicious anaemia) forum - lots of good info there

[CarolineC57 in reply to ribbon]

Thanks, Ribbon - going to have to pursue that with the B12 I think.

[ribbon in reply to CarolineC57]

Good luck. Dogged persistence, patience of Job...you'll get there in the end

[Ansteynomad]

I was another one whose TSH was always in range, although rising, but FT4 and FT3 were always in the bottom 30% of the range. I managed to wangle my way onto levo when my TSH was 4.2 (0.35-6) and I feel so much better, it's almost not true.

So yes, if your FT4 and FT3 are below optimal levels for you then technically you are hypothyroid.

[CarolineC57 in reply to Ansteynomad]

Thanks, Ansteynomad. As mentioned to the others above, this helps me feel like maybe I'm still going down the right route with investigating possible thyroid issues.

[Clutter]

Are you taking 500mg-1000mg vitC when you take your iron to help absorption? You could also ask your GP to run a coeliac screen to check for gluten intolerance.

[CarolineC57 in reply to Clutter]

Hi Clutter. No, I haven't been taking vit C but it sounds like I'd better start!

I had a test for coeliac disease a few years ago and it came back OK. I also went gluten-free for a few months last year (or it might have been the year before), but it didn't seem to be helping so I stopped (too much messing around to stick to the diet and feed my hungry husband too - lol!). I might have to try again with that in the future.

At the moment, I'm afraid I'm not getting any GP help at all - I'm on my own with all this.

[shaws]

These are a couple of links which may be helpful:-

thyroiduk.org.uk/tuk/testin....

thyroiduk.org.uk/tuk/testin...

[crimple]

Are you taking thyroid meds well away from iron meds? Have you tried Spatone, seems to have more easily absorbed iron? Are you on a wheat free diet? I always has low iron until I went onto wheat free/GF free diet. Food intolerances definitely affect absorption of Vitamins. Good luck

[CarolineC57 in reply to crimple]

I'm not on any thyroid meds, Crimple. I'm undiagnosed - with little/no help from my GP and no chance of a referral to an endo given the latest test results.

As to going gluten-free, I did try that for a few months but it didn't seem to be helping. It was so difficult sticking to the diet that, with no tangible signs that it was doing any good, I stopped it. Might have to think about it again though.

I'll look at Spatone, thanks. Never heard of it before!

[Angel2]

Hi Caroline, my thyroid bloods are very low but just in range, however my dr asked me to do a thyroid urine test and this was really low he said I am producing thyroid ok even if it is not much but that it is not Reaching my tissues, so maybe a urine test might show up more? Just a thought

Hugs Angel x

[CarolineC57 in reply to Angel2]

That's a good idea, Angel. Unfortunately, though, I don't have any doctor's help with this. But I might have a look and see if I can get a urine test done privately - like I did with the bloods. Thanks!

[Angel2 in reply to CarolineC57]

Hi Caroline, yes I had to do it privately also with a private dr as nhs would not help

[Issy]

What about thyroid antibodies? Basal temperature?. Adrenals?

[CarolineC57 in reply to Issy]

TPO (antibodies) was less than 10 when I had a private blood test done, Issy. Basal temp was 36.1 when I checked it after I first joined this board - a little low. I haven't had adrenals tested - I'm just assuming there might be a problem there and now taking NutriAdrenal. I'm sure I've noticed a little boost from it. Will take these for a month or two and then try NutriThyroid, I think. I'm using Dr P's book to help me.

[whispers]

I have had a read through the replies and agree with all that has been said, however, I didn't see anyone mention your vit d result, ( if I missed it,apologies) This also needs addressing as a lot of the symptoms you get with hypothyroidism are also those you can suffer from with a vit d shortage. This shortage in your results is saying severe, you may well find that this is too due to a malabsorption issue. So question this too whilst querying you pr iron and b12. What iron supplement are you taking and in what dosage? And how are you actually taking it? Ie: time of day and making sure its at least an hour before coffee/ tea or 2 hours after etc

[CarolineC57 in reply to whispers]

Hi whispers - thanks for your reply! I've been self-supplementing for some time with VitD3 - since I was found to be "borderline deficient". It now looks to me from the ranges above like I'm just about in the "optimally replete" range. I'm still self-supplementing - but just with 600iu per day rather than, initially, 5,000iu - then I took 1,200iu for a while. I *hope* the 600iu will keep me in range (difficult to tell though, when the GP refuses to test this any more - quote "can't keep doing lots of blood tests - costs too much"!).

I didn't realise iron had to be taken away from coffee or tea, so thanks for that. I'm actually trying to give up coffee anyway (not easy!). The rubbish iron tablets you get in a supermarket or chemist have no effect on me at all. I've tried a liquid iron preparation (can't recall what it was called) and that did increase my iron levels a little (one of the few tests the doc will do). I'm now trying Solgar "Gentle Iron" (iron bisglycinate) 20mg as this is supposed to be non-constipating and I get a *lot* of trouble with severe constipation. I don't know if this is helping - will probably have to pay for my own iron blood test in a few months time.

I've also started taking the "Better You" brand of B12 oral spray. I've only just started this as I had an *active* B12 test done privately recently too (still awaiting result).

Since the only two good doctors in my practice retired in the last few months, I'm well and truly on my own with this (I was never referred to an endo) - so I'm just hoping that what I'm doing, with the amazing help from everyone on this forum, is the right thing. Trial and error, really!