Fluctuating between subclinical and overt hypo ... - Thyroid UK

Thyroid UK

137,148 members160,828 posts

Fluctuating between subclinical and overt hypo TSH levels, should and how do I get treated?

Iris16257 profile image
22 Replies

Hi everyone,

I've been feeling unwell for quite some time, and a few months ago I went to the doctor for a check up. I just turned 29 yrs old. Blood tests show I have high tsh levels, T4 T3 in normal range, and presence of thyroid antibodies, but also in normal range. I've been having typical hypo symptoms - mostly fatigue. But, my doctor seems to be reluctant to treat me as my tsh results have ranged from 7.5-10.5. Doc ended up talking about anxiety/depression and ended up giving me a letter about counselling... So frustrating. Should I be treated with tsh fluctuating between 7.5-10.5? I've had 3 tests in 6 weeks (2 were private). Thank you

Written by
Iris16257 profile image
Iris16257
To view profiles and participate in discussions please or .
Read more about...
22 Replies
greygoose profile image
greygoose

Absolutely, yes. You are hypo when your TSH gets to 3 - but the NHS will not admit it. Do you have your FT4/3 results?

SlowDragon profile image
SlowDragonAdministrator

Do you have actual results and ranges you can add

See a different GP. With high TSH and high antibodies you should have levothyroxine treatment started

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 as you know you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Blue Horizon Full thyroid test but not including vitamins

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 )

monitormyhealth.org.uk/thyr...

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Standard starter dose of levothyroxine is 50mcg (unless over 65 years old). The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either 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 slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test, or buy test online BEFORE trying strictly gluten free diet

Assuming test is negative you can immediately go on strictly gluten free diet

If coeliac test is positive you will need to remain on high gluten diet until endoscopy, with maximum 6 weeks wait, officially

Trying strictly gluten free diet for 3-6 months

If no noticeable improvement, 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...

restartmed.com/hashimotos-g...

Iris16257 profile image
Iris16257 in reply to SlowDragon

yes, have just posted the results, thank you

silverfox7 profile image
silverfox7

You must be feeling dreadful! Though TSH results are outside the range and most of us feel best when out TSH is nevercto one or even under. Sadly many doctors aren’t up to speed as even in the range it’s where in the range that is important.

Is there another doctor you can see atcthe surgery though I appreciate the timing isn’t good for seeing a doctor. In the mean time look at the Thyroid Uk site as they run this group. There is a lot of information you can print off to show your doctors and ask for a trial as you are well over the treatment figures. Look through all they have to say and make notes of how you need to have tested etc. We also tend to be low in essential vitamins etc so ask your doctor to check Bit D, B12, folate and ferritin as you could be very low in one or more-lots of us need to supplement.

Let us know how you get on plus shout out if anything you don’t understand.

Marz profile image
Marz

Can you post your Private results - with ranges ?

Iris16257 profile image
Iris16257

thanks for the quick replies everybody!

my latest results were:

Low: Vitamin D (Low) 45 (normal range: 75 - 175 nmol/L) - I have started taking Vit D supps

Ok: Ferritin 47 (normal range: 13 - 150 ug/L)

Ok: Active B12 92.0 (normal range:37.5 - 188 pmol/L)

Ok:Folate (serum) 27.9 (normal range:8.83 - 60.8 nmol/L)

High: Thyroid Stim. Hormone ( High) 10.51 (normal range: 0.270 - 4.2 mIU/L)

Ok: Free T3 5.2 (normal range: 3.1 - 6.8 pmol/L)

Ok: Free Thyroxine (FT4) 14.8 (normal range:12 - 22 pmol/L)

Ok:Thyroglobulin Antibodies 34.(normal range:3 0 - 115 kU/L)

Ok: Thyroid Peroxidase Antibodies 22.9 (normal range:0 - 34 kIU/L)

Ok: Total Thyroxine (T4) 146.00 (normal range:59 - 154 nmol/L)

What do you guys think? Why would my TSH be high and everything else ok?

I spoke to a different doctor as well who said to get tested 3 months again after the first test, then if that comes back similar results then we MAY be able to look at treatment, as I am subclinically hypo? I just want some goddamn energy!! There are days where I still get a shock looking in the mirror with just how pale and dark my eyes are, eek!

SlowDragon profile image
SlowDragonAdministrator in reply to Iris16257

So your thyroid antibodies are not high. So perhaps not Hashimoto’s (yet) though antibodies fluctuate

Suggest you work on improving low vitamin D, aiming to increase to at least around 80nmol and around 100nmol maybe better

folate on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Only start one supplement at a time and wait at least 10-14 days to assess any reaction...good or bad

Also look to increase iron rich foods to improve low ferritin

What’s your diet like?

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

dailyiron.net

Are you taking any other medication?

Retest full Thyroid and vitamins in 2-3 months after adding last supplement

Because once started on levothyroxine this is usually a lifetime medication Guidelines do recommend getting tested twice via NHS at 2-3months apart

Iris16257 profile image
Iris16257 in reply to SlowDragon

I eat a vegetarian diet and have been taking multivitamins for a while, ones that include b vits and biotin, vit c and a etc. Tried taking iron supplements but they just tasted so grim... I eat tofu which is a good source of iron apparently? I've added an extra vit d supplement too

I'm also on the contraceptive pill, could these make hypo or tsh fluctuations worse? Could it be a cause?

Meant to get retested in May but ofc docs and medical services are super stretched right now - part of the reason I'm here, to look for insight because I feel bad bugging my GP right now!

Angel_of_the_North profile image
Angel_of_the_North in reply to Iris16257

Did you remember to stop taking biotin a week before blood tests? If not, test results are not reliable. Tofu is bad for the thyroid (as is all soya protein) - you could try making hemp fu instead. Chlorella or spirulina, and lentils and chickpea,s or just cooking in iron pans would be a better source of iron

Iris16257 profile image
Iris16257 in reply to Angel_of_the_North

Ok I will cut out tofu, thank you

No I was still taking my vitamins, I didn't know to stop and Dr didn't ask if I was taking supplements

SlowDragon profile image
SlowDragonAdministrator in reply to Iris16257

All soya can affect thyroid

thyroidpharmacist.com/artic...

Suggest you cut soya out of diet and retest in 6-8 weeks

Can be very difficult to maintain adequate iron as all plant based iron is non-heme

Low B12 symptoms can be a problem

b12deficiency.info/signs-an...

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

Iris16257 profile image
Iris16257 in reply to SlowDragon

So could soya result in high/false tsh readings?

SlowDragon profile image
SlowDragonAdministrator in reply to Iris16257

If you are eating a lot it might do

SlowDragon profile image
SlowDragonAdministrator in reply to Iris16257

Also ask for thyroid ultrasound scan

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

humanbean profile image
humanbean

Why would my TSH be high

Because you are hypothyroid. Your thyroid isn't working as well as it should be. One of the first ways that shows up in many people is that Free T4 starts dropping as the body starts to convert more and more of it to Free T3 (which is the active thyroid hormone and hence the most important one for feeling well). Your pituitary is getting the message that you don't have enough T4 around so it is pumping out more TSH to make the thyroid produce more thyroid hormones.

Eventually your Free T4 will drop further, your production of Free T3 will drop and also, as a result of the effects of hypothyroidism your conversion of Free T4 to Free T3 will suffer further.

At the moment your Free T4 is 28% of the way through the range and your Free T3 is 57% of the way through the range. People have individual "set-points" at which they feel best. So you may (for example) feel at your best with Free T4 at 70% of the way through the range and Free T3 at 60% of the way through the range. But since nobody ever gets blood tests done when they are feeling great nobody knows their own set-point.

There are several ways in which people can become hypothyroid. In the western world the commonest cause is autoimmune hypothyroidism. This is where the body's immune system starts destroying the thyroid. This is the cause in about 90% of cases in most of Europe, the USA and some other areas.

In parts of the world where iodine is in short supply in the diet people can become hypothyroid for that reason.

You might find this link of interest.

healthunlocked.com/thyroidu...

I doubt that many doctors even know what constitutes a "normal" TSH in healthy people with healthy thyroids.

humanbean profile image
humanbean

Ok:Thyroglobulin Antibodies 34.(normal range:3 0 - 115 kU/L)

Ok: Thyroid Peroxidase Antibodies 22.9 (normal range:0 - 34 kIU/L)

Although your antibody levels are in range at the moment, they can and usually do fluctuate, sometimes quite dramatically. So negative results can never be relied upon to stay negative. If you ever get a positive result in either of the antibodies you will know you have Hashimoto's Thyroiditis i.e. autoimmune hypothyroidism. Once you have a positive result for Tg antibodies and/or TPO antibodies there is actually little point in measuring them again. Some people like to reduce them if they can, and so they do test them regularly, but for many people it won't make a lot of difference - they will still have Hashi's.

Iris16257 profile image
Iris16257 in reply to humanbean

Great, good to know thank you

Eddie83 profile image
Eddie83

What has your doctor done about getting your antibody levels down? Hashi's antibodies are infamous for causing fluctuations. Has anyone counseled you on whether you have food intolerances and/or depleted nutritional levels and/or gut dysfunction (which can be diagnosed via stool test)? Even 7.5 is way too high, the AACE range (0.3 - 3.0) is closer to reality.

Iris16257 profile image
Iris16257 in reply to Eddie83

We didn't discuss antibodies, just got told they were ok as in normal range. The only nutritional thing we talked about was vitamin d and I'm now taking extra supplement. Hmm will look into gut dysfunctional also, thank you for the info

vocalEK profile image
vocalEK in reply to Iris16257

You might not be taking enough Vitamin D. Vitamin D intake usually is recommended at 400–800 IU/day, or 10–20 micrograms. However, some studies suggest that a higher daily intake is needed to maintain optimal blood levels. The Grassroots organization is sponsoring research into Vitamin D and various health conditions and has found that taking sufficient Vitamin D to raise blood levels to 60 ng/ml (150 nmol/L) can prevent many types of cancer. The safe upper limit is considered to be about 60 ng/ml, but people with symptoms of toxicity usually have levels above 150 ng/ml. To help the Vitamin D route dietary calcium to bones and teeth, rather than being deposited into soft tissue, you can take Vitamin K2-MK7 along with Vitamin D3. This calculator gives you an idea of how much to take to reach a specified blood level. grassrootshealth.net/projec...

CapnM profile image
CapnM

I was hypo on 4.6.

I had a blood test with good GP. Unfortunately poor GP at same practice reviewed my results offline and marked me as "subclinical come back in 6 months". Poor GP obviously didn't read my notes as were littered with comments on fatigue from early morning, loss of brain concentration etc.

I had to write to original GP who pulled me straight back in and put me on basic dose of levo. ( I started on 25mcg which is low for most newbies). Changed my life once it kicked in after 2 weeks.

I am not sure what to advise except preserve. Perhaps try and get a different GP though difficult process to go through with no guarantee of results.

Make it a fact based argument, keep a diary of your fatigue, brain fog, aches and pains and all other symptoms. Doctors used to diagnose hypothyroidism from symptoms before the advent of the TSH test. Do have an open mind though, there are many overlapping symptoms with other diseases.

One more thing, if you look up the NICE working group consultation on thyroid which was performed (I think ) last year. It has some interesting observations all from other GPs. One of them was over reliance on TSH readings. Perhaps go in armed with this information.

Iris16257 profile image
Iris16257 in reply to CapnM

Wow thank you so much for the advice. Great you got treatment and feel so much better! Yeh I think I need to stick up for myself a bit more, I tend to get a bit flustered when I'm trying to explain my symptoms to dr

You may also like...

Fluctuating TSH should I increase meds

had a blood test done with medichecks. My results are as followed. Thyroid Function TSH * 22.28...

Fluctuating TSH levels - can anyone advise please?

of my latest blood tests and the TSH has shot up. TSH 34.69 (0.27-4.2) T4 11.6 (10.5-24.5) Ferritin...

How bad do I need to get before I will be treated?

“within range”. Should I just try to find an endocrinologist instead of relying on my GP? TSH:...

Is there Relationship between TSH, FT3, and FT4? How could I Improve my FT4 and FT3 levels?

within range). My testosterone are within range but mildly low at 12.51 mnol/L against range of...

Subclinical Hypo - Should I test privately?

the forms to be tested for: Thyroid function Test TFT: TSH+fT4 (tPP) Thyroid Antibodies TA (tPP)....