Thyroid bloods "normal" not sure way to go now - loads of symptoms. Desperate!

[Babygodmother]

Hi everyone, not long joined. I think I am hypothyroid but my blood results are "normal". Here they are (first set are NHS tests done at 9am two weeks ago, 2nd set Blue Horizon from a week ago taken at 6.30am. Lab range in brackets)

TSH 2.17 (0.35-5.00) - also done Nov 2014 (1.69)

FT4 14.4 (9.0-21.0) - also done Nov 2014 (13.1)

Ferritin 14 (15-200)

CRP 5 (0-10)

TSH 3.34 (0.27-4.20)

FT4 15.09 (12-22)

FT3 4.00 (3.10-6.80)

T4 total 85.7 (6.45-142)

TPO antibodies <5 (<34)

Anti thyroglobulin 12.8 (<115)

Ferritin 17.7 (20-150)

CRP 4.1 (<3)

So, according to results, I am slightly anaemic and have a slightly elevated CRP. Absolutely NOTHING wrong with my thyroid.

Then why do I feel so crap? I have so many symptoms of hypothyroid, on there own not significant...but all together.... But these are the worst ones...

Burning feet (horrendous!)

Palpitations

Migraine (3 in the last 2 wks, I have them only occasionally)

Pins and needles

Joint pains (wrists/feet)

Exhaustion!

Scalloped tongue

Numbness (toes, mainly. One episode of lower left leg)

Tinnitus/hissing - almost constant

Other minor symptoms like heavy eyelids (noticed this over last 6 or 7 months, right eyelid down to lash line now), IBS (though this is long standing), bit protein in urine, hair loss on head/eyebrows (my partner keeps going on about my eyebrows ie have I plucked them thiner, which I haven't), spots etc etc....

Ok, so am I going mad? Thyroid UK says that TSH should be between 0.1-2.0, can anyone explain this? According to that, I have hypothyroid. I have symptoms. They also say that the treatment level in the UK has been raised to 10, from 4-5 which they state was too high in the first place! I read somewhere that they treat you in the US if you are >3, which I am.

Can anyone advise? I am back at my GP on Thursday and he said he would refer me anyway but my referral has been rejected due to my "normal" blood results. I spoke to our locum GP where I work (I'm a practice nurse) and she would treat on symptoms (she has Hashimoto's but no symptoms). My GP won't budge and is now going to refer me (because of my age) to check out the anaemia (lol, also on the list of symptoms!) plus a neurology referral due to pins and needles/burning feet.

I am still convinced something is going on with my thyroid. I had a friend at school who was very thin, hyper and had prominent eyes. She had "normal" thyroid bloods for 10 YEARS so was told nothing is wrong! It is obvious (now) to me something was wrong. She has heart problems now, plus had surgery on her throat.

Sorry this is so long - has anyone had this experience or am I going nuts?

This is not in my head

Thanks, I appreciate any advice

Ps I am in Glasgow and noticed a support group who meet just up the road from me! I will aim to be there on Thursday, if anyone going

[Marz]

Ferritin is way too low - needs to be around 80/90. So are you taking iron ? - someone else with more knowledge will suggest the best one to take along with lots of VitC to aid absorption.

No B12 result - many of your symptoms scream B12 Deficiency - which is a neurological condition - and so misunderstood by Docs. The symptoms for B12D are similar to being Hypo and so often go hand in hand. No Folate result either. Also Iron needs to be tested.

b12deficiency.info/signs-an...

The above website will tell you everything and more about being deficient in B12.

You live in Glasgow - so you are probably very low in VitD - again this needs to be optimal for you to feel well. Could not see a result for this. VitD is more than just a vitamin and there are receptors for D on every cell of the body - so that's a lot of VitD.

The good news is you do not have Hashimotos

Hope you soon feel better....

[Clutter]

Babygodmother, ferritin is optimal half way through range. Yours is below range which usually means iron anaemia which can cause palpitations, joint pain and fatigue.

Ask for B12, folate and vitamin D to be tested. The burning feet, numbness, pins and needles may be B12 deficiency and scalloped tongue and tinnitus can be symptoms of low B12 as well as low thyroid. Low vitD can also cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

Improving ferritin/iron may also improve thyroid function. It can be difficult to tolerate thyroid replacement and dose increases until ferritin/iron is good. Good levels of vitD (>75) aid conversion of T4 to T3.

Your thyroid probably is beginning to struggle, function declines with age, but you are unlikely to get NHS treatment until TSH is over range or FT4 below range. Happily you are negative for autoimmune thyroid disease (Hashimoto's).

[MollyMoo53]

HI

I posted here today but just reading this thread- what is the thing that differentiates between thyroid and Hashimotos? i am not sure I know the difference yet. My stuff is, on the face of it all auto immune so I am wondering about Hashimotos.

[Jazzw in reply to MollyMoo53]

When a thyroid is underactive, it can be simply because it doesn't work very well - likely never worked very well, right from childhood, though probably well enough not to cause any alarm when blood tests were done, for example during pregnancy. In the UK, many doctors believe that everything is ok until the TSH rises over 10.0, when in truth most folk who have optimal thyroid function tend to have TSHs around the 1.5 mark. You might have a genetic predisposition to having a sluggish thyroid, or it might get sluggish with age.

But the other cause of hypothyroidism, and the cause of a significant amount of cases, is Hashimoto's disease, which is an autoimmune condition. In its early stages, Hashi's causes thyroiditis, which may cause overproduction or underproduction of thyroid hormones. Over time, the antibodies created slowly destroy the thyroid, leaving the sufferer increasingly hypothyroid.

You can sort of tell the difference by testing for antibodies. If antibodies are present in sufficient numbers you'll have Hashimoto's for sure. But even if the antibodies test comes back negative, it might still be Hashimoto's, as it might be that you weren't producing many antibodies at the time of the test. Sometimes it takes a few tests to establish that you have the autoimmune form of hypothyroidism (Hashimoto's).

[MollyMoo53 in reply to Jazzw]

thanks Jazzw. I recall GP saying he was asking for antibodies check too but I have no idea how that turned out. I think I need to be more pushy about getting this thing on a regular check basis and proactive about making sure I get results and what they mean. i will ask Gp for printout of results when I go to ask about the enlarged heart thing another of the gps mentioned when I went in for a emergency appt- non hypo related

[Jazzw in reply to MollyMoo53]

Always a good idea to get printouts. I reckon we should be given them as standard, but that's a far off dream, I fear

Happy to help. I've read your post here: healthunlocked.com/thyroidu... - welcome, and so sorry to read you've had such a tough time. You'll find lots of knowledgeable people here - it's just quiet on the boards tonight!

[MollyMoo53 in reply to Jazzw]

thanks- i waffled on a bit but there is some catharthis in writing it down for the first time.

[Jazzw]

Babygodmother, I think you said your B12 was "normal" - but do you know what the result actually was? From what you say, I'm starting to suspect B12 deficiency more and more. It should have been at least 500 - was it? B12 deficiency will impact on your thyroid function.

And you're not slightly anaemic - you're very anaemic. You've got no iron stores at all. That in itself will make it tricky for your body to convert T4 to T3, the active form of thyroid hormone.

[Babygodmother]

Hi thanks everyone

I've had other bloods but thought they were ok. U&ES/LFT/Gluc all fine. Here's the results anyway.

NHS

HB 132 (115-165)

MCV 87.8 (80-100)

MCH 27.8 (27-32)

B12 357 (200-900)

Folate 9.2 (3.1-20)

Blue Horizon

B12 264 (142-725)

Folate 20.92 (10.4-42.4)

I'm already taking Vit D supp, locum at my work place says double it. I thought I'd had this checked but can't see it anywhere on my printout. I also had (yesterday) blood test for coeliac, rheum factor, magnesium, cortisol & cholesterol (lol, long shot!).

I've just bought some Floridix iron supp and starting this tomorrow.

Reallyfedup123, what is the significance of taking the other supplements? Please clarify. And do you think the NDT will help? Bit reluctant to self medicate....

Thanks

[Jazzw in reply to Babygodmother]

Your B12 is low. And dropping quite fast, it would appear...

Have a read of this: b12deficiency.info/signs-an...

[Babygodmother in reply to Jazzw]

Thanks, oh FYI everyone.... The Floradix Iron Supplement is "liquid iron & vitamin formula. Contains herbal extracts & fruit juice concentrate".This is listed as

Iron

Vitamin B2, B6, B12

Vitamin C

Re bloods, docs just appear to see things in the "normal range". I guess we should be in at least mid-range to feel good?

If anyone has any comments/suggestions re anything else would really appreciate it. Thanks.

[Babygodmother in reply to Jazzw]

Hi jazzw...

Wow, this sounds like a possibility, fits in with my symptoms...mmm, my B12 is in the "grey zone" (200-450). Thanks, I will see what GP thinks...

[Jazzw in reply to Babygodmother]

Unfortunately, many GPs only see the "normal" range and won't consider that an in-range result is anything but normal. But as Reallyfedup said, it's not like that - your B12 should be much further up the range. Anything under 500 is considered deficient - and that's while keeping in mind that the B12 standard test is a little flawed. The active B12 test is considered to give a better picture. Worth having a read around - Google "Sally and B12" to find some interesting stuff. Others here may have some recommendations of good sites to explore.

[Marz in reply to Babygodmother]

Hi Babygodmother - in the first post of this thread I mentioned the B12 site where you will learn everything about B12. On the site you will read that the range in Japan starts at 500 and goes up to 1300. Your blood result for B12 is VERY low when you consider that only 20% of that amount is available in the cells where it is needed. Doctors are unaware of this fact it seems.

You need to check out your B12 deficiency with other tests mentioned on the B12D site - MMA - Homocysteine - and the tests for Pernicious Anaemia mentioned by Waveylines earlier.

When you start to supplement with B12 - it is important that you also take a B Complex to keep all the B's in balance. Please also research a more potent Iron than the one you are taking. Combine this with at least1000mcg of VitC x 2.

Doctors do not receive training in Vitamins and minerals - it's all about waiting until you are ill enough to need a drug for a symptom. Don't let that happen. Many of us here have improved our health with the correct supplements - which in turn supports the thyroid and its actions in the body. Some have even been able to reduce the dose.

[Fuzzybird7]

Have you had B12 tests? my GP told me thyroid and B12 deficiency are similar but with B12 deficiency you would get pins and needles in hands and feet, also ulcerated tongue/mouth. Sounds likely to me, has to be worth a check. Hope you find the problem and get treatment and feel better soon

[Babygodmother in reply to Fuzzybird7]

Thanks yes had it checked. Could poss be this and I am just not in the "optimal" zone for me. All this is like trying to fit the pieces of a jigsaw together that are all the same colour - frustrating and very annoying that you don't get anywhere!

[waveylines]

In your shoes baby godmother I would focus on the B12 first as your Anemia and low b12 points to Perncious Anemia. This really needs checking out -so I would ask GP to check for Intrinsic Factor as well. We need this to absorb vit B12. Lack of b12 and being anaemic will affect your thyroid function. So it could be that if the B12 deficiency/aneamia is corrected your thyroid will sort itself out.

I would ask your GP to refer you to a Haemotologist.

I would not supplement at the moment because this will skew the results and you need to find out what the underlying cause is.

Martin Hooper from the Pernicious Anemai Society wrote a great book which would be worth a read. Also they have a great helpline and nurse on the end of a phone so you might find it helpful to ring them to discuss next steps. Hope this helps.

[oozlumbird]

Hi there. This does indeed sound like B12 deficiency – every single symptom you list. It's really important that you don't start supplementing before you've exhausted all the testing possibilities, because it will skew all further results. The B12 serum test is seriously flawed, and you can be deficient within the 'normal' range. Much better to have Active B12/MMA/homocysteine. If you're happy to take tests privately, this may be a better route than trying to fight your GP to do the right tests, as GPs are notoriously unwilling to treat B12 deficiency properly, even though there are clear guidelines for them to follow (The PAS community on Health Unlocked can help you further on this). It's also important not to delay, as these neurological symptoms can be hard to reverse the longer they go untreated.

I had a very similar set of symptoms to you, and spent a long time going down the hypothyroidism route, especially since I'd already had Graves' disease. However, it was B12 injections that stopped the pins and needles OVERNIGHT! I did have a bit of a fight with the GP, as I'd already started supplementing, and so all my blood test results were normal. Unfortunately, since my symptoms went so long untreated, the numbness seems to have remained, and this may be permanent. I don't want to worry you, it's just to say that the sooner you're able to investigate, the better.

[SilverAvocado]

Babygodmother, l know is a lot to take in, but I think think you're still in that mindset of feeling your GP is the final, knowledgeable authority, and that if the problem is there eventually they will find it and treat it.

But I think the big message here is that it's clear as day there a handful of big problems with the results you've posted - it's obvious to everyone here why you will be feeling ill. And this is mainly in the results that are in the normal range.

In order to get better you will need to take charge of your own treatment and making sure you get better. You may be able to get some additional tests from the NHS, but you're very unlikely to get, e.g B12 injections, because even though your B12 is far too low, it's well into the normal range. Same with your thyroid, it looks like bit shaky and FT3 is very low. But if you would like to try out treating it that would have to be on your own initiative.

[Marz in reply to SilverAvocado]

I agree with your post Silver Avocado. I have posted twice on this thread with helpful information - and no response. I wonder if people think we pluck information from the sky without looking at our profiles to check our own journeys to wellness.....

I am not a medical person but have gained knowledge from others that know more than me - and have been pointed in the direction of good sites and books. It is - as you say - all about taking our health into our own hands

[gthealthy]

have you thought of Lyme Disease?