Update/advice sought

[Newmorningmercies]

After coming off my 100mcg Levothyroxine for 6 weeks and getting my Thyroid bloods checked via Medichecks whilst off the meds and returning on them these have been my results:

Off Levo :-

TSH >100 (Range: 0.27-4.2) =sig hypothyroid - advised by Medichecks to consult my doctor urgently

Free T3 = 0.9 (Range: 3.1-6.8)

Free Thyroxine = 2.9 (Range: 12-22) Thyroglobulin Antibodies = 15.20 (Range: 0-115)

Thyroid Peroxidase Antibodies = <9 (Range: 0-34)

I then had my bloods rechecked by Medichecks 6 weeks after restarting my 100mcg Levo and the results were:-

On Levo:-

TSH =7.00 (Range: 0.27-4.2)

Free T3 = 3.59 (Range: 3.1-6.8)

Free Thyroxine =17.6 (Range: 12-22)

Thyroglobulin Antibodies = 14 (Range: <115) Thyroid Peroxidase Antibodies = 12 (Range: < 34)

I was referred to an Endocrinologist who I saw 2 weeks ago and am currently awaiting the blood test results.

It was confirmed that I do have autoimmune Hashimoto's and that despite being on Levo for 24 years and having recently had my Levo dose REDUCED from 125mcg to 100mcg as my GP said I was overmedicated it now appears as though I need my dose increasing!

The results also show I have low serum folate (10.9 nmol/L) and my vit B12 is in the low-normal range (51.2 pmol/L).

My Endocrinologist did say that many people feel better when their TSH is close to 1. This certainly explains why I've always remained symptomatic despite taking Levo and, which is worryingly common, why I've been diagnosed with all sorts of mental health conditions rather than testing my Thyroid function with robust tests against OPTIMAL rather than the "normal" ranges used.

Can anyone shed any more light in all the above please? Would you say I simply need to upy Levo dose to bring my TSH towards 1 to being about much needed improvements in how I feel and function?

[GlowCoach Administrator]

Could you add reference range for each test - numbers in brackets after your result. We have to see the reference range to know where your result falls within it and ranges vary between labs.

Are you testing every time as per the protocol that many patients have found helpful?

Last dose of Levo 24hrs before blood draw, no biotin containing supplements for 3-5 days, blood test booked for 9am or earlier.

This gives a more standardised result that you can better compare against previous reults and also shows stable blood levels as opposed to the peak after you have just taken Levo.

With no reference range its hard to be exact but by most ranges your antibodies look negative. Did your Endo do antibody tests? A small percentage of Hashi patients never have positive antibodies.

Its very important to supplement low vitamin levels to OPTIMAL levels. This helps thyroid hormone to work well.

Doctors often make heavy handed dose adjustments and we sometimes need to advocate for ourselves if we think that they are changing the dose by too much or not enough.

[Newmorningmercies in reply to GlowCoach]

Reference ranges added...thank you for your advice!

[SlowDragon Administrator]

You also need vitamin D and full iron panel test for anaemia including ferritin levels

Yes increase in levothyroxine to 125mcg daily

Which brand of levothyroxine are you currently taking

ESSENTIAL to maintain OPTIMAL vitamin levels

B12 and folate are far too low

what vitamin supplements are you currently taking

[SlowDragon Administrator]

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 a week later add a separate vitamin B Complex 

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.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

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...

Low folate

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....

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

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 active B12 over 70

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

[humanbean]

Why did you come off your Levothyroxine for six weeks?

For someone who had been diagnosed hypothyroid for many years it seems like a very risky thing to do. If a doctor asked you to do this (rather than it being your decision) I would make sure that you keep a copy of your results after six weeks without Levo and show it to any doctor who wants you to do this in future. And refuse to come off Levo again!

Allegedly, torture is not allowed in the UK, but you have obviously been tortured by whoever asked you to come off Levo for all that time.

Just for interest, this is a link to an article from the BMJ in 1949. It shows the effects of untreated hypothyroidism on multiple patients :

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

Anyone with such low levels of Free T3 and Free T4 as you had is in danger of developing myxedema coma, which is fatal in about 50% of cases.

en.wikipedia.org/wiki/Myxed...