Making sense of my results: Hi My levels seem to... - Thyroid UK

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Making sense of my results

Hi My levels seem to be in range but I still having symptoms of tingling / pins and needles in my arms and legs, dry skin on my shins and face (only temples and nose area now). I still suffer with fatigue, but not as bad as I was, mood swings which are both worse around the time of my period. I take b12 injections (started self injecting every 3-4 wks as the GP would only give it to me every 3 months).

I take iron with vitamin c supplements in tablet form, vitamin d3 supplements in tablet form and folic acid all taken daily in the morning on an empty stomach.

I eat a gluten free diet, totally grain free and drink soya milk in decaf tea and almond milk in smoothies.

TSH 2.39 (range mIU/L 0.27 - 4.20)

Free thyroxine 14.400 (range pmol/L 12.00 - 22.00)

Free T3 5.63 (range pmol/L 3.10 - 6.80)

Throglobulin antibodies <10 (range IU/mL 0.00 - 115.00)

Thyroid peroxidase antibodies <9.0 (range IU/mL 0.00 - 34.00)

Active B12 >300 (range pmol/L 37.50 - 188.00)

Folate serum 14.48 (range ug/L 3.89 - 26.80)

CRP - High sensitivity 0.96 (range mg/l 0.00 - 5.90)

Ferritin 72.9 (range ug/L 13.00 - 150.00)

20 Replies
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How much Levothyroxine are you currently taking?

Your results suggest you are ready for 25mcg dose increase in Levothyroxine

TSH should be around one and FT4 towards top of range and FT3 at least half way in range - so around 18-20 in this case

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24hours prior to test, delay and take immediately after blood draw. This gives highest TSH and lowest FT4. (Patient to patient tip, not to be mentioned to GP or phlebotomist)

Is this how you did the last test?

No vitamin D test ?

You might be better off changing folic acid supplements for a good quality daily vitamin B complex, one with folate in not folic acid.

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

All soya is best avoided with any thyroid problems, including soya lecithin

Perhaps change to coconut milk

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

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Hi SlowDragon thank you for your response. I'm not taking any levythyroxine they took me off it yrs ago, but I think I am in need. I was supplementing with vitamin B complex, but stopped around a month ago as wanted to be sure it 100% wouldn't affect my results. I completed the test around 8.30am. I've been told all my levels are 'within' range? I paid for a private test and the GP would only do TSH levels, which I understand doesn't give a full view of possible underlying issues. How can I get the GP to take on board I need levythyroxine, when they keep saying I'm within range and sending me away? I'm a lot better since pretty much self diagnosing and supplementing from research, but I can't give myself levythyroxine and it also needs to be monitored so I'm not taking too much. Any advice would be really appreciated on how to tackle these Gps who say from my results I'm not in need of treatment. I gave up with b12 and self inject but I can't do it in this case can I.

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I agree with Mary-intussuception you B12 is very high

Perhaps try reducing frequency of injections

Changing to vitamin B complex rather than folic acid

chriskresser.com/folate-vs-...

Get vitamin D tested

vitamindtest.org.uk

Come back with new post once you have results

Thyroid levels are pretty good. (Only too low if on Levothyroxine)

Perhaps diet and supplements have had good effect

Getting B complex rather than just folic acid and checking vitamin D levels is next step

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I dont understand how my levels are low if I'm on levythyroxine but not if I'm not?

Yes I tried different variations of injections of b12 and still try less injections, but my symptoms get a lot worse. I will be going back on b12 complex now.

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Your FreeT3 is good. Far better than mine - and I'm on Levothyroxine. Your TSH is in range for a Euthyroid person. It would, however, be over the therapeutic target level for a Hypothyroid person. T4 needs to be increased to stop the Pituitary Gland from overworking in producing high levels of TSH (Thyroid Stimulating Hormone ). With Hashimoto's Autoimmune Thyroiditis, when your Antibodies increase to fight an infection then your Thyroid comes under more severe attack and is rendered Underactive - hence not enough T4 produced (so not enough T3 available ) and Pituitary Gland works harder than it should to compensate for low T4 by producing more TSH.

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Before I went gluten free or supplemented with any tablets or injection of b12, my cortisol level was just under double the normal range. I had test for a tumour in pituitary gland, but the tablet they gave me suppressed my levels so they say I didn't have the tumour

Still no clue why my cortisol levels were nearly double normal range. Normal range being 500/600 at the time my levels in excess of 900. Not sure exact figures now as it was around 6 yrs ago, when I 1st became un well.. but it was 900 and something? They just left me at that and said I had CFS. There is something underlying still I need to get to the bottom of as I am very nearly well. If I stop/reduce my b12 injections, the symptoms of pins and needles, muscles weakness ect all get a lot lot worse.

My gp used to have me on levythyroxine, lowest dose 25, maybe 10 yrs ago, also I was on b12 injections, but they stopped them. Not sure why. I just took their advice that I didn't need them anymore. My body practically went into shut down.. I was sleeping constantly, felt sick, no memory, pains in my ribs. I've gradually over yrs found out which supplements I'm low in and went gluten free, which has got me back in work. I've tried the gym on and off but things keep happening to prevent me from carrying on. My levels being better than yours is of no consequence, our bodies are not black and white, I may not function as well as you at a higher level? Not sure what that comment means? Why do you keep shouting about B12? I'm here for a little guidance on my thyroid results

I am also a member of PAS and was on there 2 yrs before I decided to self inject with a lot of help and advice from the guys on there. I'm trying to get myself well again.

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When our own thyroid is providing the thyroid hormones then a TSH up to three is probably fine, though over two may suggest beginning to struggle for some people.

But a doctor will very likely never agree to Levothyroxine trial with low TSH, good FT3 and still in range FT4

You can see from graph below, most common TSH is between one and two

Median TSH graph

healthunlocked.com/thyroidu...

TSH daily variation - TSH highest very early morning

healthunlocked.com/thyroidu...

If on Levothyroxine, then your own thyroid production is turned off, you rely totally on replacement hormone, so TSH over one is probably too high. It means there isn't high enough level of replacement hormone.

Because your TSH remains too low to get diagnosed you might consider DIO2 gene test or Blue Horizon Thyroid DNA multiple DNA test

Blue Horizon test can reveal genetic reasons for low TSH, despite being hypothyroid

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

bluehorizonmedicals.co.uk/t...

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Thanks that's really helpful. I'll have a look into those links and tests SlowDragon

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No need to be so rude!

b12deficiency.info

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Your B12 is HIGH - perhaps this is responsible for some of your symptoms. Don't understand why you are still injecting so much when it's above range. Excess is stored in the liver and can do damage/ cause symptoms.

No evidence of Autoimmune Thyroiditis in your Antibodies results.

Your FreeT4 is at the low end of the range but your FreeT3 is good.

Have you ever had an Ultrasound scan of your Thyroid.

Why are you gluten free? Have you been diagnosed with Coeliac Disease? Have you been diagnosed with any Autoimmune Disease?

Why are you grain free.

As far as I'm aware supplements need to be taken with or after food to aid absorption, and early in the day.

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Dr Chandy of the b12 society advised that dosage as I was very symptomatic. Even though my levels were 237, just within range (range reference 200-900). and it has majorly improved my symptoms. What you have suggested about b12 is not what I've been advised by many people on the b12 society group. I also suffer other symptoms I don't notice daily as it's exercise related and I can't train anymore as I suffer with general muscle weakness, breathlessness and chest pains. I had circulation tested and heart checked. I've tried leaving it longer between injections and my symptoms come back worse and I find it hard to function and work. I find the more physical energy I use the faster my symptoms appear. I'm a hairdresser and a busy mum, so 3-4 weeks is where I'm at with it. I was hoping if I could find what is still causing these last few symptoms I might be able to reduce my b12 injections?

No I have not been diagnosed coeliac, I was told I had CFS and IBS. After deteriorating and being practically bed ridden with fatigue, memory loss, amongst other symptoms, I looked into things myself I cut out gluten and my IBS, which was not food related, cleared right up and I was able to return to work, even though I still had some symptoms. My gp advised me continue with it if it helped. After reading Dr Peter Osbourne's book, NO GRAIN NO PAIN, I decided to try grain free.

No I've not ever had reason to have an ultra sound of my thyroid.

The supplements for iron say to take on an empty stomach 1hr before food or 2hrs after eating food, unless you have problems taking it then maybe take with food. I take all my tablets in the morning. Once I forgot to take my vitamin D3 in the morning and subsequently took it at night and I couldn't sleep. I looked into it and found out it can interfere with sleep. So now I religiously take it in the morning.

Sorry if I don't mention all symptoms, it's hard to recall them all, as it's been on going a long time. I take vitamin d3 as I was low and the GP put me on them and iron is the same I was borderline low, I thought that might have been why my b12 wasnt working for long, as I now understand, your levels work in conjunction with each other.

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Your B12 is OVER 300 . The top of the range is 188.

Google high B12.

Also :

there are two scenarios given on the B12 Society website . One says the maintenance dose is injections every 12 weeks the other says maintenance dose is every 8 weeks.

I would ask GP to test Vitamin D level. Likely to be insufficient or deficient.

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At gp the levels for b12 are between 200 and 900 mine were 237 and very symptomatic. Not sure why top of therange is 188 from medichecks? It's high because I supplement. Vitamin b12 is water soluble and I know what symptoms are when high (similar to when they are too low) that's why I've built up to this amount gradually... but if I leave long periods in between injections, I get a lot worse. And I test it regularly trying to leave longer periods. It doesn't work for me and many people in same situation who need to supplement more.

I take vitamin D daily, it was going up in right direction last time it was checked, close to optimum range.. I'm not sure what it is now if I'm honest.

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The Medichecks test is Active B12 test, much narrower range

That's very different from standard B12 test where range is much wider

Perhaps consider testing homocysteine and MMA

nutris.viapath.co.uk/pages/...

Using test of Homocysteine levels to check for low b12

b12-vitamin.com/homocysteine/

Good explanation on homocysteine

veganhealth.org/b12/hcy

Link suggests Oral as good as injections

aafp.org/afp/2003/0301/p979...

But would get started on vitamin B complex first, not do full test B12+ test for 6-8 weeks after.

Low vitamin D often affects all B vitamins

drgominak.com/sleep/vitamin...

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I did look at having homocystiene and MMA but because I'm already supplementing I was worried it would skew the results, even if I could manage to stop taking b12 for a few months?

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I don’t know the answer to that

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I recommend you ask over on the Pernicious Anaemia Society forum here:

healthunlocked.com/pasoc

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I have asked the PAS, I've been a member of it for past 2 yrs. I was looking for more direction on my thyroid results. Thank you.

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you gave

Active B12 >300 (range pmol/L 37.50 - 188.00)

the top of the range of 188 was given by you, so it does seem that your B12 results are high.

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The Gp and medichexk and PAS said it's expected as I have the b12 injections. I was looking more for direction on the thyroid results. But I just wrote them all down as wasnt sure if you needed them as well.

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