Subclinical Hypothyroidism- Help

[Sharjhen]

Hi Everyone. I ve recently been diagnosed as subclinical hypothyroidism. I ve had 3 separate tests with slightly raised tsh levels but normal t4. I also tested positive for tpo antibodies. Due to symptoms and the above gp agreed to commence me on levothyroxine being 50mg. It's now been 4 weeks and I ve just had my tsh levels tested, which has come right down to 0.64 (range 0.2-4.0). GP has advised to carry on with the levo but I m now really worried that I am going to end up over medicated. Also I still don't feel 100%. I m very much up and down at the moment. Can anyone give me some advice cos I m so anxious about all of this and my GP has not told me anything. Thank you

[Dahliasanddaisies]

Testing after 4 weeks? That's not long enough to wait for your thyroid hormones to level out. 6-8 weeks is the recommend time frame for testing after a change in dose. You also need your T4 and T3 testing ideally but the GP may not do this. Many of us test privately.

50mcg is a standard starter dose, you're unlikely to be over medicated on it. It takes 6-8 weeks to get working, possibly a bit longer. Then retest and see if you need an increase

[Regenallotment Ambassador]

I agree, way too soon to know, levels will steady beyond 8 weeks too and in my experience TSH tends to come back up once your body gets accustomed to the new dose. Slow and steady. For me weeks 3-4 are always the worst with odd symptoms, improves by 6-7.

[Sharjhen in reply to Regenallotment]

Thank you for replying. Ah I felt like I was getting better then the last week I began to feel rubbish again so when I saw my tsh had dropped right down I panicked and thought I m turning over active. I m new to this and it's all a bit scarey

[Jazzw]

It’s extremely unlikely you’ll become over medicated on 50mcg levothyroxine.

Far more likely that your doctor in their rather obvious ignorance of the development of hypothyroidism will leave you undermedicated for a long time. Stick with us and we’ll do our best to help with not letting that happen.

By rights, a doctor should only be describing your condition as “subclinical” if you didn’t have any symptoms. But you did, didn’t you?

How high was your TSH before treatment? If you have raised antibodies then you most likely have autoimmune thyroid disease, which we often refer to here as Hashimoto’s Disease.

[Sharjhen in reply to Jazzw]

Hi thank you for replying It was only slightly raised being 4.8 (range 0.2 -4), but it was raised on 3 separate occasions. My tpo antibodies was high at 1196 (range <100).

Yes I had symptoms but my GP said they could relate to anything although he couldn't find anything from my bloods so after alot of persuasion and a visit to a&e they agreed to trial levothyroxine.

He hasn't told me I have to go back for more blood tests. He has just written stable on my notes ?

[Jazzw in reply to Sharjhen]

OK. So. GPs are frequently not very knowledgeable about hypothyroidism. It isn’t their fault. They get told in medical school that a simple white pill - levothyroxine - is all that is needed to fix the situation and that the goal is to keep TSH in range.

Unfortunately it isn’t always that simple. For a start, the TSH range is abnormally wide. Most people with a normally functioning thyroid gland have a TSH between 1.0 and 2.0.

Next, many doctors erroneously believe that you can “top up” the function of a failing thyroid gland with levothyroxine. It doesn’t work like that. It isn’t like a vitamin tablet. Taking even a small amount of levothyroxine tends to switch off the body’s ability to make its own thyroxine. When you’re started on a low dose, sometimes that can leave you having to function on a lower amount of thyroid hormone than you were before you started taking the levothyroxine.

Your doctor needs to test more than TSH to know whether you’re on enough levothyroxine. And when you’ve been started on levothyroxine you need a test after 6-8 weeks to see whether it’s time for a dose increase. 50mcg is a starter dose. It won’t be enough in the long term.

Next, if you’ve been under active for a while, there’s a strong chance you’re going to be low in Vit B12, folate, Vit D and ferritin—all of which will leave you feeling rubbish. That’s because being hypothyroid lowers your body’s ability to absorb nutrition via your gut.

[Sharjhen in reply to Jazzw]

Ah thank you for explaining this to me.

I paid for private tests after doing a bit of research . The results were

Tsh 4.87 (range 0.27 - 4.2)

Ft3 4.2 (range 3.1 - 6.8)

T4 18.3 (range 12 - 22)

X

[Lulu2607 in reply to Sharjhen]

Hi. Just to say, on a positive note, if those results were before starting levo you did well to get your GP to prescribe it. Your T4 is pretty good if that's pre medication. Many of us here have experienced GPs who dismiss us even though results suggest we need treatment and we are symptomatic.. As others have said, your symptoms are likely due to poor vitamin levels which is part and parcel of being hypothyroid. It's hard work keeping well when hypo and unfortunately we often don't have the energy we need (because we're hypo) to keep on top of it all.

[Sharjhen in reply to Lulu2607]

Believe me it's been a battle with the GP-s but I ve done my research and I ve therefore been able to go and fight my corner.

I have had my folate, b12, ferritin and vit d all checked. VIt D is in the high end of normal. However folate was low so i was prescribed 5mg folic acid. B12 and ferritin all in the normal range but all in the low end of normal. GP'S just see normal and think it is ok, but like you say it's important that these vitamins/minerals are optimal in people with hypothyroidism. Honestly I m exhausted from trying to tell my GP that.

So what worries me is that my symptoms have been due to low levels of ferritin etc and I m taking levothyroxine when I don't need to. I mean yes I have antibodies and a slightly elevated tsh but is this what is causing my symptoms. I just don't know and my GP definitely does not know.

I ve decided to book privately to see to see an endocrinologist who has been recommended to me so hopefully they may be able to help x

[jgelliss in reply to Jazzw]

👏👏👏👏

[SlowDragon Administrator]

Welcome to the forum

Testing was too soon

Minimum 6-8 weeks

ALWAYS test early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

Have you had vitamin D, folate, ferritin and B12 levels tested

And coeliac blood test

If not …..request these are included in next test or test privately

Just testing TSH is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease,

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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 all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

[Sharjhen in reply to SlowDragon]

Hi. Thanks for replying.

The brand is accord.

I requested coeliac blood test and it came back negative

I also requested folate, ferritin, vit d and b12.

Vit d is good

Folate was low and been given 5mg folic acid.

B12 is normal range but it's low end so I requested b12 injections but was given b12 tablets.

Ferritin is again within normal range but low end. Dr wouldn't give me anything so I went to speak to my pharmacist who gave me ferrous fumerste but this upset my stomach. Currently seeking a suitable alternative .

I paid for a private blood test for t4 and t2 results were

Tsh 4.87 (range 0.27 - 4.2)

Ft3 4.2 (range 3.1 - 6.8)

T4 18.3 (range 12 - 22)

Thank you

[SlowDragon Administrator in reply to Sharjhen]

Free T4 (fT4) 18.3 pmol/L (12 - 22) 63.0%

Free T3 (fT3) 4.2 pmol/L (3.1 - 6.8) 29.7%

This test was AFTER starting 50mcg levothyroxine?

Or before

Was test done early morning and last dose levothyroxine 24 hours before test

[Sharjhen in reply to SlowDragon]

Sorry this was done just before starting levothyroxine.

Am I best waiting until I ve been taking levothyroxine for 8 weeks and redoing the test?

[SlowDragon Administrator in reply to Sharjhen]

Yes waiting at least 6-8 weeks

Then retest early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

B12 is normal range but it's low end so I requested b12 injections but was given b12 tablets.

Folate was low and been given 5mg folic acid.

Once you finish your folic acid prescription

Consider 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 supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

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

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 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

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[SlowDragon Administrator in reply to Sharjhen]

how low was ferritin

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

See the many replies by FallingInReverse or humanbean on low iron and/or ferritin

[SlowDragon Administrator]

requested coeliac blood test and it came back negative

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

[arTistapple]

Reading your post. You have caught on pretty quickly. Congratulations on that. Just a bit of patience and heed your advice - which you are clearly doing. Don’t expect too much too soon.

[FancyPants54]

Definitely retest after 8 weeks. You will feel better for a little while and then worse again for a bit and then more balanced with each dose increase. We all hope we don't really need the medication, but you have Hashimoto's so you do need it. Embrace it, don't fight it.

You are ordering tests, good. Make sure to follow the protocol we use here when you take your next test. Book the blood draw for before 9am and leave 24hours between the last dose of Levothyroxine and the blood draw.

B12 at or below 500 is considered inadequate by the Pernicious Anaemia Society. The range for B12 is far too big.

I once saw a GP who herself was hypothyroid and had no thyroid gland due to having it removed because of cancer. She looked at my TSH results which were over 7 at the time and said "if my TSH goes over 3 I can't get out of bed". So congratulations on getting on with helping yourself over this, of pushing your GP and of learning and being proactive. We have to look after ourselves with this condition. Congratulations on getting out of bed each day and carrying on. We are all heroes, but not many people realise it.

[Sharjhen in reply to FancyPants54]

Thank you for the positive message. I agree we are heroes and definitely not many people understand what a battle this truly can be.

Trust me I have spent some mornings crying because I felt like I couldn't carry on. Never mind holding down a full time job and run a house.

The whole experience has been made worse by GP's that seem to know very little about the condition. and GP's that just look at blood results and because it says normal against it think it's OK. Well it really isn't .

My B12 is 287 (range >211) and I told my GP i am possibly deficient. He kept saying your not anaemic cos your fbc is fine. I had to explain to him that just because I m not anaemic it does not mean I m not deficient, expecially when I have autoimmune like like hashis. I literally had to screenshot pages and guidance from the nice guide and quote it to him. It's unbelievable how these Gp's are so ignorant to the importance of vitamins and minerals.

Rant over lol

[FancyPants54 in reply to Sharjhen]

Oh you might be new to this, but you are already really good at what it takes. I'm impressed. Screen shots of NICE guidelines, great work! No, that B12 result is low. You definitely need to raise it and hold it above 500. I had to resort to self-injecting it in the end. Fortunately it's cheap and easy to buy injection ampules from Germany and needles and syringes in the UK. One thing less for me to worry about.

The ignorance around this condition is, well, almost criminal. So many are left to rot with it unless they can summon the last bits of effort to help themselves and have the money to pay for tests etc.

You should explain to your family that this disease is one that robs us of our energy. Ask them how a piece of equipment works if you pull the plug out. And when they say it won't work, tell them the thyroid is our energy supply and the disease has pulled the plug out. It's simplistic but it's about all anyone want's to consider and it gives an idea. Tell them you will be able to get well, but it is going to take time, certainly weeks, possibly several months, and that in the meantime you can't do all the things you used to do. Housework and full time job is too much. You have to do the job, so they are going to have to help with the housework, shopping, cooking etc. from now until you feel better. And if they don't, it probably won't get done.

Be firm with family and needy friends. You don't have the capacity to deal with their problems right now. You need them to deal with yours.

[ICE187]

It took me almost a year to feel about 90% better after adjusting my dose up and down and playing with my diet. Gluten free, dairy free, cutting out all high FODMAP foods.