New Diagnosis mild Hypo: Hi all, Just joined! I... - Thyroid UK

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New Diagnosis mild Hypo

PatMarina profile image
7 Replies

Hi all, Just joined! I was diagnosed with mild hypo week before last. Started on 25 mcg of Levothyroxin. I had phone consultation with GP this morning and asked for current and previous results. The TSH really varies over the several years... highest being 4.59 in 2012 and most current is 4.39 last month (no other GP bothered to tell me this!). I also have MS so he’s sending me to endocrinologist to test fo Hashimoto’s, and ENT because it feels like there’s something in my throat. Although the Levo dose is so low I’m feeling lots better! I’ve really struggled with fatigue since around Xmas which I put down to MS progression.

Questions: Is it possible for such a low dose of Levo to make a difference? Is it worth taking medication for such a low TSH? (He said my T4 and T3 were in normal range... I’m sorry I don’t understand a lot of this yet).

Many thanks,

Pat x

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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Presumably as you have MS you are taking vitamin D already?

Any other vitamin supplements?

Yes as MS is autoimmune, likely cause is Hashimoto’s

But vast majority of primary hypothyroidism is autoimmune thyroid disease anyway

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels NOW or at next test if not been tested yet

Bloods should be retested 6-8 weeks after each dose increase (or brand change) in levothyroxine

Standard starter dose of levothyroxine is 50mcg.....unless over 60 years old

So starting on low dose can make you feel more tired

Often Depends how low vitamin levels are, how well you tolerate levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Come back with new post once you get hold of actual results

PatMarina profile image
PatMarina in reply to SlowDragon

Thank you so much SlowDragon. Great info there. I was on very high dose Vit D3 but have had to come off it as I was at toxic level. So I’ll wait for result of next blood test in a month. I’m also on calcium as I had breast cancer in 2016 and now the hormone inhibitor which I’m still on made my bones thin. If it’s not one thing it’s another. I just thought I should google that drug to make sure it doesn’t effect thyroid! Thanks again. Pat x

greygoose profile image
greygoose

Is it possible for such a low dose of Levo to make a difference?

It is possible, yes. Depends on how much hormone your thyroid managed to make on its own. However, it won't help for long. Make sure you get a retest six weeks after starting it, and an increase of 25 mcg.

Is it worth taking medication for such a low TSH?

If you had symptoms, yes. Because your TSH isn't that low. OK, so the NHS likes it to get to 10 before they will diagnose. But they are the ones in the wrong. You are hypo when your TSH gets to 3. A euthyroid TSH is around 1, never over 2.

He said my T4 and T3 were in normal range...

The so-called 'normal' range. But, that doesn't mean a thing. Just because it's somewhere in the range doesn't mean it's good, because the ranges are too wide. It's where in the range the result falls that counts. :)

PatMarina profile image
PatMarina in reply to greygoose

Thanks greygoose. Great answers. GP wants me tested again in 4 weeks so that will be 6 weeks after starting Levo. I need to do my research and learn more about T4 and T3. My fatigue levels are much better. I suppose it felt so bad because I have MS fatigue and then hypo fatigue on top of that was pretty bad. Even a small level of improvement makes a big difference. Thanks again.

greygoose profile image
greygoose in reply to PatMarina

Well, basically, they a are both thyroid hormones - unlike TSH which is a pituitary hormone - but T3 is the active hormone, and T4 is the storage hormone that converts into T3.

Trouble is, not everyone converts well. To know how well you convert, you need to know your FT4 and FT3 numbers - results and ranges - and compare them. If you don't convert well, you're unlikely to feel fully well on T4 (levo) only. So, you really, really need a print-out of your results. :)

fuchsia-pink profile image
fuchsia-pink

Congratulations on finding the forum!

I expect you have only ever had TSH and, if you're lucky, free T4 tested. This isn't enough, as SlowDragon says. Please try and get the full testing doen - I have had some success with my GP by saying that these are the tests that Thyroid UK recommends.

I'd also like to expand on what greygoose said about "normal" results and lab ranges ...

Say the lab range for free T4 is 12 - 22. If your result is 12.5 you will feel rubbish. If it's 20 you will probably feel fine. But both are "normal" and "in range" ... it's where you are in the ranges that matters - and how you feel.

As a newbie, you may find all the jargon a bit overwhelming, so may I recommend helvella 's excellent glossary [look under "pinned posts"]

Good luck x

PatMarina profile image
PatMarina

Thank you Fuchsia-pink. Good info. Yes I will look at the pinned post. I take comfort in remembering my early days of MS and feeling overwhelmed with information and now, many years later, I know far more than your average GP! I’m hoping to see endocrinologist soon but who knows with this covid crises. Thanks again Pat x

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