Please help!: Hello everyone, I will try not to... - Thyroid UK

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Please help!

GLH00 profile image
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Hello everyone,

I will try not to waffle on too much! I have been feeling ‘unwell’ for a few years now. I was told by a friend that my symptoms sounded a lot like an under active thyroid. I had my tsh bloods taken numerous times and have fluctuated from 1 to 2.85 however this test seems different.

My GP is telling me it’s all normal however I’m not convinced. Could anybody tell me what my results mean?

Thanks so much x

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GLH00
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SeasideSusie profile image
SeasideSusieRemembering

GLH00

To compare test results accurately, they need to be done under the same conditions every time. We always advise here for thyroid tests

1) Book the first appointment of the day or do your private test as early as possible, no later than 9am. This is because TSH is highest very early in the morning and lowers throughout the day. For a diagnosis of hypothyroidism (and when on Levo to avoid a reduction or when looking for an increase in dose) TSH needs to be as high as possible.

2) Don't eat before the test, delay breakfast until afterwards, and drink water only. Coffee in particular affects TSH.

So were all your tests done like this? Or different times and conditions?

Your current results show a TSH too high for a normal healthy person - that would probably be no more than 2. It shows your FT4 below range and that would possibly be around mid-range in a normal healthy person. It shows a decent level of FT3 (T4 is a pro-hormone which converts to T3 which is the active hormone every cell in our bodies need), and your body is doing it's best at the moment to make enough T3 but that will eventually reduce as your body struggles more.

There are two possibilities here.

1) You are on your way to developing Primary Hypothyroidism but that wont be diagnosed normally until your TSH reaches 10.

or, and I am not medically trained, and I am not diagnosing, but what could be indicated here is

2) You may have Central Hypothyroidism. This is where the problem lies with the pituitary (Secondary Hypothyroidism) or the Hypthalamus (Tertiary Hypothyroidism) rather than the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly elevated with a low FT4. This fits with your current TSH and FT4.

Central Hypothroidism isn't very common, few doctors know about it and possibly few endocrinologists know either. Most endocrinologist are diabetes specialists and know very little about the thyroid anyway. You would need a dedicated thyroid specialist to know about Central Hypothyroidism.

Here is some information you can take to discuss with your GP:

1) bestpractice.bmj.com/topics...

You will only be able to see the Summary, click on READ MORE to read as much as is available to the public. Your GP will be able to access the whole article.

2) ncbi.nlm.nih.gov/pmc/articl...

You will be able to read the whole article.

If you think this may apply to you, you could do some more research, print out anything that may help and show your GP.

As for finding a dedicated thyroid specialist, your GP may or may not know of one - ensure that anyone he sends you to is a thyroid specialist not a diabetes specialist.

You can also email Dionne at

tukadmin@thyroiduk.org

for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Also ask on the forum if anyone knows of a thyroid specialist who knows about Central Hypothyroidism.

Other results indicate

CRP - this is high, over range, and this indicates inflammation somewhere. It's not specific so it should really be repeated and if it remains high then investigation should be carried out.

Ferritin is pretty good.

B12 is on the low side. Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an... If so then list them to show your GP and ask for tests for B12 deficiency/pernicious anaemia.

Folate is below range so therefore deficient. You will need folic acid prescribing but don't start taking this until further testing of B12 has been carried out and B12 injections or supplementation started as it will mask signs of B12 deficiency.

Did you not have Vit D tested? That is very important to complete the vitamin/mineral picture.

KimberinUS profile image
KimberinUS

hi there,

i come from the pernicious anemia (b12) forum.

you have severe folate deficiency!

The recommendation for taking b12 prior to folate is so that high folate (above range high, in your case 60.8) does not skew a mcv result causing a b12 deficiency to go undetected.

you have your b12 level already and it is low in range but not considered deficient.

you definitely need folate now. min 400 mcg per day and i would take 800 mcg per day so it could improve. a b12 supplement along with folate would not hurt.

so im going to question why your crp is so high. this is an indicator of inflammation.

h pylori (which i had) is a chronic infection that causes inflammation.

During a chronic infection your body will keep available iron in your body as low as possible (because bacteria needs iron to proliferate) while maintaining homeostasis of your red blood cells. This means your red blood cell and hemoglobin will be fine while your serum iron and iron saturation % are low in range. this sometimes means increases to ferritin (depending on how much iron you consume) which is stored iron. it also means enough iron for "in range" lab tests but no iron for you to have any energy.

my ferritin in Nov 2017 was 83 (range 10-232 ng/ml), serum iron 69 (range 40- 190 ug/dl), iron saturation % 24%(range 11-50%).

these were not optimal.

optimal serum iron is 110 ug/dl and optimal iron saturation % is 35%

stopthethyroidmadness.com/l...

i had h pylori with no heartburn!!!

after eradication my serum iron is 109 ug/dl and iron saturation % is 35%!!! hmmm just what the link says. imagine that.

my crp is now .7

of course your crp (inflammation) could be due to something else. this info is just what i am familiar with.

best of luck and health

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