Do I need levothyroxine? : Hi all. Have recently... - Thyroid UK

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Do I need levothyroxine?

KevinA74 profile image
17 Replies

Hi all. Have recently had a raft of symptoms, low HR, breathing issues, tiredness, sleep problems, joint pain etc. Had a test which showed Tpo antibodies of 516 and TSH of 4.9 and T4 of 12. Iron and ferritin both at the low end. My issue is that I also have a possible issue with mild cervical stenosis which could also be causing some symptoms of which I am awaiting MRI results.

My question is could Tpo antibodies and TSH and T4 at those levels possibly require levothyroxine? Could it help? Is it more likely than not I would have symptoms at those levels?

Thank you for any help 😁

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KevinA74
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Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.

Do you have the reference ranges for each of your tests? This is important as they vary from lab to lab.

Positive TPO antibodies signify autoimmune thyroid disease also known as Hashimoto's where the thyroid gland is slowly destroyed and eventually you will require replacement thyroid hormones for life. This can take many years and thyroid hormone levels may fluctuate in the early stages. People can still be very symptomatic at this point.

Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.

You may well benefit from treatment with Levothyroxine but to get an NHS diagnosis you usually require 2 TSH tests above range or one above 10. This can vary depending on the personal opinion of your GP. Your symptoms are quite likely due to low thyroid levels.

Do you also have a copy of your iron/ferritin results? NICE state that a ferritin level of 30 or below is deficient and your GP should start you on iron tablets. Note that should you begin treatment with Levothyroxine it should be taken 4 hours apart from iron tablets.

Did you have any other vitamin tests run?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private postal testing early Monday or Tuesday morning.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.

KevinA74 profile image
KevinA74 in reply toJaydee1507

Thank for the reply, much appreciated. Ranges are as follows

TSH 4.91 (0.27-4.2)

T4 15.3 (12-22)

Iron 11.6 (10.6-28.3)

Ferritin 91 (20-300)

Transferrin Saturation 23 (20-55)

As in my reply to tattybogle the endocrinologist has suggested I trial levothyroxine and unsure about this. Would 50mg be too much at these antibody and TSH, T4 levels?

Thank you again

Jaydee1507 profile image
Jaydee1507Administrator in reply toKevinA74

50mcgs is just a starting dose. If you know your weight in kilos you can do a very poor estimate as a guide to how much Levo you will eventually need.

weight in kilos x 1.6 = Levo in mcgs. (not an accurate estimate but a guide!)

Usually we are started on a low dose such as 50mcgs, take this for 6-8 weeks, new blood tests and according to results dose adjusted upwards. Most people end up on 100-200mcgs Levo.

If your Endo is recommending treatment then I would accept that. many people struggle for years without a diagnosis and treatment. Do not expect instant results. It will take many months to titrate your dose to the correct amount for you and to feel well. Getting key vitamins to OPTIMAL is key to this.

Your iron level looks low but I see SlowDragon is already advising you on vitamins.

KevinA74 profile image
KevinA74 in reply toJaydee1507

Thank you again and yes makes sense to take the endo recommendation as you say. Wow, many months? Okay I will begin the levothyroxine asap!

Jaydee1507 profile image
Jaydee1507Administrator in reply toKevinA74

Yes many months. Increments are usually in 25mcg or less doses. The body takes a long time to recover also.

tattybogle profile image
tattybogle

Hi kevin 500 is a significant amount of TPOab , so no question that you are likely to need thyroid hormone replacement at some point.

it wouldn't usually be prescribed until TSH was over range twice with a 3 month gap (to rule out a one off) .. what's the lab range for that TSH test ?

fT4 . ,,, we need to know the lab range used for that too ... eg [12-22] or [7.9 -14] makes a difference to interpretation of that result .

Normal healthy TSH is usually sitting under 2 ish (often around 1) for the majority of healthy people .. so something is usually amiss if it's got as high as 4/5 ..... and in your case there is clear evidence of what is amiss .. the TPOab clearly show your immune system has already been having a go at damaging your thyroid.

Yes Hypothyroid Symptoms are possible with TSH 4/5 and relatively low but in range fT4 results .

Low iron /ferritin could also be causing symptoms , and since it is unlikely you'd get presctibed Levo until TSH is at least over 5 , it would be a good idea to sort those ou before starting thyroid meds anyway. post your actual iron / ferritin results and  SeasideSusie or  SlowDragon or  Jaydee1507 will be able to advise on the best way to improve them .

But even though symptoms may be hard to disentangle , cervical stenosis /iron issues cant be responsible for the high TPOab, or the high TSH . So the thyroid is clearly having problem.

KevinA74 profile image
KevinA74 in reply totattybogle

Thanks for your reply, appreciate it. Ranges were as follows…

TSH 4.91 (0.27-4.2)

T4 15.3 (12-22)

Iron 11.6 (10.6-28.3)

Ferritin 91 (20-300)

Transferrin Saturation 23 (20-55)

Endocrinologist suggested a trial of levothyroxine and wondering how long this would take to have an effect and if it was being taken unnecessarily how would it affect me? Always rather wary of medication as have generally kept myself fit and healthy which is why I am so confused as to this possible thyroid issue.

Thank you again

SlowDragon profile image
SlowDragonAdministrator in reply toKevinA74

So male looking at range on Ferritin

Are you vegetarian or vegan?

KevinA74 profile image
KevinA74 in reply toSlowDragon

Hello and thank you for the reply. Not vegan or vegetarian. B12, Vitamin D and coeliac test were all fine. Although this was the highest the TSH had been it has been consistently around 4, just below or above, for around six months.

SlowDragon profile image
SlowDragonAdministrator in reply toKevinA74

please add actual results and ranges for B12 and vitamin D

Presumably you are now prescribed iron supplements

Are you taking any other supplements

KevinA74 profile image
KevinA74 in reply toSlowDragon

B12 345 (197-771)

Vit D 84 (51-163)

Not prescribed iron, should I take iron supplements at this level do you think? If so what is recommended?

I take omega 3 and glucosamine at present.

Thanks again, any advice appreciated

SlowDragon profile image
SlowDragonAdministrator in reply toKevinA74

Will tag  SeasideSusie and  humanbean to comment on iron and ferritin

B12 needs improving

Folate test result?

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

B12 drops 

natureprovides.com/products...

Or

B12 sublingual lozenges 

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500

How old are you

Lower B12 more common as we get older

But many Hashimoto’s patients struggle to maintain good vitamin levels

SeasideSusie profile image
SeasideSusieRemembering in reply toKevinA74

KevinA74

Iron 11.6 (10.6-28.3)

Transferrin Saturation 23 (20-55)

Not prescribed iron, should I take iron supplements at this level do you think? If so what is recommended?

Serum iron is 5.65% through it's range. Saturation is 23%. Optimal levels for these, according to rt3-adrenals.org/Iron_test_... are:

Serum iron - 55-70% with higher end for males

Saturation - 35-45% with higher end for males.

These results are very poor and may suggest iron deficiency. It is not wise to self supplement, I would discuss these results with your GP and request he addresses them, prescribes iron supplements and please make sure that you are regularly tested with a full iron panel to check your levels.

KevinA74 profile image
KevinA74 in reply toSeasideSusie

Thank you and will talk to the GP regarding the iron results

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Are you male or female and Approx age

Spinal issues can be thyroid related

Please add most recent B12, folate, vitamin D and full iron panel test results including ferritin

Exactly what vitamin supplements are you currently taking

High thyroid antibodies confirms autoimmune thyroid disease, also called Hashimoto’s

GP should do coeliac blood test

nice.org.uk/guidance/ng20/c...

If GP not done this yet request it is BEFORE considering trial on strictly gluten free diet

if this was your first abnormal thyroid test GP should retest in another 6-8 weeks

ALWAYS test thyroid levels early morning for highest TSH…..ideally just before 9am

SlowDragon profile image
SlowDragonAdministrator

Forgot to add link re spine and thyroid

hypothyroidmom.com/thyroid-...

KevinA74 profile image
KevinA74 in reply toSlowDragon

Thai you for this.

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