Worried about symptoms - normal TSH: Hi here are... - Thyroid UK

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Worried about symptoms - normal TSH

Jax2 profile image
Jax2
18 Replies

Hi here are my test results. I am very worried about my symptoms which are affecting my quality of life - depression, anxiety, unable to think straight, tearfulness, constipation, joint aches, heavy periods, irregular periods, loss of appetite, dry skin, cold intolerance. Latest results below I have been told are normal so what is wrong with me I don't understand. I take 50mcg Levothyroxine for hypothyroid diagnosed in 2011. Anything further I can provide please let me know, thank you.

Jan-2017

Serum TSH level: 3.97 mIU/L (0.2 - 4.2)

Serum Free T4 level: 12.2 pmol/L (12.0 - 22.0)

Serum Free T3 level: 4.0 pmol/L (3.10 - 6.80)

Serum ferritin: 84 ng/L (15 - 150)

Serum vitamin B12: 196 pg/L (190 - 900)

Total 25 OH vitamin D: 20.2 nmol/L (>75 adequate)

Serum folate: 1.44 ng/L (4.6 - 18.7)

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Jax2
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Jax2 profile image
Jax2

Iron infusion done in March 2016 - haematologist has said once ferritin is below 50 he will refer me to have a second one done.

puncturedbicycle profile image
puncturedbicycle

You're undertreated. You need more meds. Your tsh should be closer to 1 and t3/t4 higher in range. This almost looks like the results of someone who is not yet treated. No wonder you feel ill.

Jax2 profile image
Jax2 in reply topuncturedbicycle

Thanks. My endo keeps adjusting my dose and I was taking as much as 150mcg Levo with T3 added in at one time. I didn't feel any better despite having better thyroid levels but I had low ferritin at the same time which I think may have contributed to how awful I felt. But as soon as the endo saw the suppressed TSH...that was it. She told me to reduce. I had become so irritated in her saying I was over replaced and I couldn't understand what it was I was doing wrong.

puncturedbicycle profile image
puncturedbicycle in reply toJax2

But to go from 150 + t3 to 50 levo, that's a very severe reduction. As you say you may have felt ill due to low ferrin, and now your folate, d and b12 are on the floor, so you'll have to get those up as well. Your ferritin needs to be better, I see why haemo wants to wait until it is 50 but in future if you are looking after it you may want to maintain closer to the middle of the range (80-100ish). And you'll need a loading dose of b12 and d.

Jax2 profile image
Jax2 in reply topuncturedbicycle

Sorry, endo didn't reduce Levo from 150mcg to 50mcg, she reduced it from 150mcg to 100mcg, then from 100mcg to 75mcg and still the TSH remained suppressed. Because she kept on and on about me being over replaced with thyroid hormone and thinking that the blame was really lying with me I reduced it down to 50mcg and removed the T3 because since starting the T3 my TSH was suppressed and it was concerning my endo.

SeasideSusie profile image
SeasideSusieRemembering

Jax2 As well as being under medicated as Puncturedbicycle has said, you have the following deficencies which could explain some of your symptoms:

B12 - anything under 500 can cause neurological problems. Recommended is very top of range, even 900-2000.

Folate - works together with B12.

Please take advice on B12 and Folate from the Pernicious Anaemia Society forum here on Health Unlocked healthunlocked.com/pasoc

You will probably need to be tested for Pernicious Anaemia, maybe need B12 injections. Do not supplement for either of these without advice from the PA forum and testing.

Your ferritin you can keep topped up either by taking an iron supplement (a big faff trying to fit around thyroid meds and other supplements) or eating liver once a week (easiest).

Vit D is severely deficient. Buy some D3 5000iu like this bodykind.com/product/2463-b... and take a loading dose of 10,000iu daily for 6-8 weeks, then reduce to 5000iu daily. Retest in the Spring. When you have reached the recommended level of 100-150nmol/L reduce to 5000iu alternate days as a maintenance dose.

When taking D3 we need it's important co-factors K2-MK7 and magnesium.

vitamindcouncil.org/about-v...

Vit D aids absorption of calcium from food and K2 directs the calcium to bones and teeth rather than arteries and soft tissues. D3 and K2 are both fat soluble so should be taken with the fattiest meal of the day.

Magnesium comes in different forms, check here to see which would suit you best and as it's calming it's best taken in the evening

naturalnews.com/046401_magn...

SlowDragon profile image
SlowDragonAdministrator

You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D. All your levels are too low.

have you ever had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

NHS rarely checks TPO and almost never checks TG, seeming to think it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.

If you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies too. Selenium supplements can help improve conversion of T4 to T3

It is chicken & egg, if you have low nutrients, and/or low stomach acid, leaky gut and gluten intolerance then you can't utilise the thyroxine. Then Thyroxine sits there unused, you appear when tested to be adequately treated/or TSH goes too low (but you feel awful)

You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's

hypothyroidmom.com/92-of-ha...

chriskresser.com/the-gluten...

thyroidpharmacist.com

chriskresser.com/the-thyroi...

Jax2 profile image
Jax2 in reply toSlowDragon

I have had antibodies checked, not sure if they are positive.

Thyroid peroxidase antibodies: 48.5 kIU/L (0 - 34)

Thyroglobulin antibodies: 255.3 kIU/L (0 - 115)

SlowDragon profile image
SlowDragonAdministrator in reply toJax2

Yes they are both above ranges - so you definitely have Hashimoto's

Clutter profile image
Clutter in reply toJax2

Jax2,

Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

Jax2 profile image
Jax2

Can eating more gluten than normal worsen symptoms? I have just come from abroad and I was literally eating gluten in every meal. I don't usually eat as much as I had done when I was away and my emotions were much flatter and I did feel a lot lower than I normally do.

Clutter profile image
Clutter

Jax2,

You are under medicated. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your endo.

B12 is very low. Ask your GP to test intrinsic factor antibodies to rule out pernicious anaemia. If PA is confirmed you will require lifelong B12 injections. It would be helpful if your GP prescribed injections to raise B12 level anyway but if GP won't you can supplement 5,000mcg methylcobalamin to raise B12.

Folate is deficient. Your GP should prescribe 5mg folic acid for 2-3 months.

VitD is deficient. My GP prescribed D3 40,000iu x 14 days followed by 2,000iu daily x 8 weeks to raise my vitD from <10 to 107.

Jax2 profile image
Jax2 in reply toClutter

Thanks Clutter. My Free T3 and Free T4 only improved when I was taking the 150mcg Levo and 10mcg T3. I would ideally look to increase back up to that but not straight away. But I am guessing I would need to speak to my endo first about this. I don't know when I will next see her because I am not on her list of patients to see.

Clutter profile image
Clutter in reply toJax2

Jax2,

If you've been discharged to your GP's care your GP can increase your Levothyroxine dose. Dose adjustments are usually in 25mcg increments every 6-8 weeks until TSH is 1.0 or lower.

Jax2 profile image
Jax2 in reply toClutter

I don't think I am discharged to my GP's care. The endo's secretary says I am due to be seen but she doesn't know when.

Clutter profile image
Clutter in reply toJax2

Jax2,

Well, see your GP if endocrinology can't arrange a consultation date. You shouldn't remain under medicated and symptomatic indefinitely.

Jax2 profile image
Jax2 in reply toClutter

Ok I will do this now.

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lizzzzzzz

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