Possible Borderline Hypothyroidism: Hi, I am new... - Thyroid UK

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Possible Borderline Hypothyroidism

mrskiki profile image

Hi, I am new to this forum but after test results reading all I can. After not feeling well for a couple of years after a major op I asked my GP for an iron test. Iron was fine, but she also tested for thyroid which I have never had before.

Reading other posts and articles, it looks like I could have just been diagnosed with borderline hypothyroidism, or maybe not? TPO marked negative but seems significant, and TSH is concern, although marked borderline . I was told to get another FT4/TSH test in a year's time but I feel I need to do something before. I'm also wondering if reducing stress would help. Grateful for any opinions.

TPO Antibodies 9 U/ml

TPO reference interval: <34 U/mL TPO antibody negative.

Monitor FT4/TSH annually.

Serum TSH level 8.9 mIU/L [0.27 - 4.2] Above high reference limit

Serum free T4 level 14.5 pmol/L [12.0 - 22.0]

Result Borderline

Edited/added in info following some really informative replies thanks you all:

D3 level 40 nmol/L - I was recommended to buy a 100% daily allowance supplement (although already taking 100-200% ....)

Serum ferritin 119 ng/ml

Serum folate 8.9 ng/ml

Erythrocyte sedimentation rate 2 mm/hr [1 - 19]

Serum C reactive protein level 1 mg/L [0 - 5]

Most impacting symptoms: anxiety, tiredness, swollen up eyes, sore throat and several stones weight gain trying to combat - already had a long term veggie/fish/dairy diet, now cut out bread, butter, sugar, cake etc not had sugary drinks for years and limit alcohol intake.

Also endometriosis for over 30 years

No treatments, just taking multivits

36 Replies

Welcome!

I'm not surprised you feel unwell.

Being undiagnosed you may find this helpful...

thyroiduk.org/if-you-are-un...

TSH 8.9 is not borderline....it is high, although there is a belief amongst medics that you are not hypo until you reach 10. In good health, without meds, TSH should be close to 2 If medicated, then 1

You are hypothyroid and should be medicated with levothyroxine - starting dose 50mcg.

Test again after 6/8 weeks and adjust dose by 25mcg ....repeat until you feel well.

It takes time, so be prepared for this.

You would benefit from a full thyroid test to include TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies.

With these ŕesults your thyroid status can be correctly evaluated

T3 is the active thyroid hormone so FT3 is an important reading...not regularly tested by medics

Many of us test privately

thyroiduk.org/help-and-supp...

In your shoes I would not be putting up with feeling unwell for another year

How you feel is the important thing, medics are supposed to treat the patient not a list of numbers!!

Stress and anxiety are symptoms of hypothyroidism (see list of symptoms in link above) correct medication can resolve this.

Suggest you speak to a GP now. Always ask for copies of your lab results, you are legally entitled to request these from the surgery.

Good luck

DD

mrskiki profile image
mrskiki in reply to DippyDame

Thankyou so much for the advice and information, I have been so tired and stressed as workloads have been high and I just want to sleep. I feel all I do sometimes is struggle to work, eat and sleep. My D3 was low but B12 well over limit. I only just saw the detail of the test results online today after a call from reception yesterday to say take vit D3 and have another test next year. I will definitely talk to GP next week now and see what my options are and look at the more detailed thyroid testing. Having access to the GPs online results certainly gives you a lot more to work with nowadays and at least I'm on the right track now I think. Thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply to mrskiki

See flow charts on here

gp-update.co.uk/Latest-Upda...

Low vitamin D

GP should prescribe 1600iu everyday for 6 months, but likely better to self supplement at higher dose

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, when hypothyroid frequently need higher dose that typical

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after first abnormal results

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Significant minority of Hashimoto’s patients only have high TG antibodies

Would need to test privately as NHS refuses to test TG antibodies unless TPO are high

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

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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 never call it Hashimoto’s, just autoimmune thyroid disease

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)

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

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 too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

mrskiki profile image
mrskiki in reply to SlowDragon

Thanks, I take a multivit with D3 most times a week but didn't know my levels were low until now. Now I have checked it does already have 100% D3 daily allowance or 200% if both doses taken so obviously not enough. I am interested in the tests available, and the cortisol is an unexpected one that may be useful as I think I'm in a stress loop with this. My tests were late pm, was lucky to get a cancelled appointment as there is several weeks waiting list.

SlowDragon profile image
SlowDragonAdministrator in reply to mrskiki

TSH has pronounced diurnal variation

Likely TSH would be 10 if you had tested early morning before eating or drinking anything other than water

At next test (via GP or privately) test early morning before eating or drinking anything other than water

You can see your TSH is far from normal on this graph

Median TSH graph

healthunlocked.com/thyroidu...

TSH daily variation

healthunlocked.com/thyroidu...

So it’s important when you test TSH ....

researchgate.net/publicatio...

According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

Not to test again for a year? it beggars belief.

Yes, there are guidelines about treatment and TSH over 10, but clinical judgement also has a substantial role in those guidelines. You consulted your GP because you were symptomatic.........said GP ran some tests which clearly highlighted a problem..........but based on those results GP decided to dismiss your symptoms as a bit of an inconvenience. Appalling clinical judgement.

Unfortunately, you have to be your own advocate, and if this GP is unwilling to re-test in a few weeks, you really need to find another one.

mrskiki profile image
mrskiki in reply to nellie237

Thanks, The GP who ordered the tests is in a couple of days a week and I will follow up with her to tie up my symptoms with the figures. At least she ordered them, so I am a number of steps forward now as have some numbers and this forum advice!

You are definitely hypo with a TSH that high. If a persons TSH is above 2.5 you will feel hypothyroidism symptoms. This was explained to me by my private only Endocrinologist. My GP refused to even check my thyroid levels for years even though I had many symptoms and really struggling. When it was eventually tested my TSH was at 36! I was in a bad way. It should never get above 2.5. It was also explained to me that the NHS set their ranges too wide. A healthy person’s thyroid TSH is normally around 1.00. If we were in an EU country like Germany they give you treatment when your TSH rises to 3.00. No point delaying treatment as it won’t get any better. You could do with treatment now. If the NHS won’t help you as they should you could consider going private for help, otherwise you’ll probably be suffering and waiting for some time. Thyroid U.K. have a list of private Endocrinologists that could assist you. Message an administrator for the list.

I only got fully well after going private. Most GP’s do not know much about the thyroid function they just go off test results where the ranges are too wide. But saying that your TSH is above the allowed range. First point of call is your GP failing that is private for a quick response and feeling better.

shaws profile image
shawsAdministrator in reply to McPammy

You are correct in that GPs in the UK appear to know very little about dysfunctional Thyroid Glands.

Before blood tests were introduced doctors knew all of the clinical symptoms and we were given a trial of NDTs (natural dessicated thyroid hormone) and if we felt an improvement we were hypothyroid and were pescribed NDTs which were adjusted until we were symptom-free and felt well.

Unfortunately, for many members NDT was withdrawn from being prescribed as was T3 (becane too expensive). They should not have been withdrawn.

I was so very unwell and I had to diagnose myself several hours after GP phoned to tell me that my blood tests were fine and I had no problems. The unfortuate thing was that my TSH was 100 and he hadn't a clue to what that figure meant.

mrskiki profile image
mrskiki in reply to McPammy

Yes it takes a while to get your head round the results and ranges and why if your TSH is high but your T4 is in range you can get such symptoms. I am so glad you get to access results nowadays online or this info would probably all just be lost in the system. We are the ones who have the greatest interest in the results after all.

SlowDragon profile image
SlowDragonAdministrator

GP is correct that they don’t start levothyroxine after first abnormal thyroid results ……..but levels should be retested in 2-3 months…..not a year

Meanwhile working on improving low vitamin D and reducing stress

You also need folate and ferritin test results

mrskiki profile image
mrskiki in reply to SlowDragon

Yes I think a more detailed test in near future is good, perhaps private to get full info and T3 etc. I've had 30 years of doctors dismissing painful endometriosis symptoms until I had a failed op, and I think that this time I'd like to make sure I don't just get left again, or treated by guesswork ...

SlowDragon profile image
SlowDragonAdministrator in reply to mrskiki

Endometriosis and autoimmune thyroid disease are often linked

kaldascenter.com/blog/endom...

preventmiscarriage.com/endo...

So essential to test thyroid antibodies and vitamin levels

mrskiki profile image
mrskiki in reply to SlowDragon

That is a really interesting, I always felt my what is now diagnosed endo issues and skin sensitivity issues were linked, now it might be thyroid as well, but the NHS often treats us as a set of separate body parts ....

SlowDragon profile image
SlowDragonAdministrator in reply to mrskiki

“Computer says no” syndrome

They don’t look at the person as a whole

SlowDragon profile image
SlowDragonAdministrator in reply to mrskiki

skin sensitivity issue……..

hives ?

psoriasis?

vitiligo?

mrskiki profile image
mrskiki in reply to SlowDragon

I'm not really sure, it didn't start playing up until my 20s, I had a relatively easy time in my teens, so they said it was probably late onset acne related. Horrible red swellings but the dermatologist when I finally got to see one at 30 or so dismissed it and said it was my fault for messing around, I'd caused scarring. I honestly didn't, there was nothing I could do they just swelled under the skin but there wasn't one during the appointment of course. Anyway it seemed to ease for a while but then came back, stress makes that worse too.

SlowDragon profile image
SlowDragonAdministrator in reply to mrskiki

Often acne and B12 issues linked

Make sure you test B12 and folate

What time of day was the blood drawn? Should be as early as possible and fasting, drinking only water, no caffeine. Could have read over 10 if done earlier. But if your GP has this little knowledge, then I agree, research a new GP

mrskiki profile image
mrskiki in reply to mistydog

It was late afternoon, I hadn't eaten much that day so hopefully my results aren't way lower than they should be, but I do expect it will be over the 10 if I retest under right conditions.

mistydog profile image
mistydog in reply to mrskiki

It's also due to the circadian rhythm, the TSH is highest around 4am. Lowest around late afternoon. If you tested early morning you'd likely have been over 10.

Below is the relevant section of the latest NICE (NHS) guidelines that applies to you .

A TSH level over the range , with fT4 still within range is defined as 'subclinical hypothyroidism' by this guideline, and this is what your recent test result show.. but it needs confirming by a repeat test .. these guidelines suggest '3 months' for this repeat test .. not a year.

( 'a year' would be more appropriate for someone with sub-clinical results who did NOT have any symptoms that could be due to hypothyroidism)

(The 3 month gap is needed to rule out a temporary raise in TSH which can happen for lots of reasons)

Your TPOab is negative, and they wouldn't consider 9 to be significant as there is often a low level . I think it would be unusual to get '0'..., (to be honest, even if yours was 33 they still wouldn't consider it significant , but we might .... )

You could retest these yourself after a few months ,along with TGAb, (because levels of TPOab do fluctuate , and some people only have raised TGab which the NHS don't usually test for ) ... but you may have difficulty getting NHS to retest these now they've got a negative result on record.

If they had been positive it would help persuade them to treat you ... but the lack of antibodies doesn't rule it out .. the current requirements for treating 'subclinical' hypo are based solely on high TSH, and symptoms , and the opinion of the GP.

When you do get you repeat NHS blood test .. MAKE SURE its as done early as possible in the morning.. don't accept a blood draw appointment in the afternoon .. preferably you want it before 9am. or as close as possible to that. (TSH is highest middle of night /early morning, falling to it's lowest round 1-3pm ish each day) Do not have caffeine/food before test.. this may also lower TSH.

I suggest you give it 3 months and then ask the GP to retest your thyroid bloods due to ongoing symptoms (assuming you haven't made a miraculous recovery) ..... if they refuse , point them to this section of the current NHS guidelines.

nice.org.uk/guidance/ng145/...

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment. "

note. since you previous test was late afternoon.... if taken first thing in a,m it would have been higher .. hard to say how much higher .. people are different , some as much as 40/50% , some not much at all.

(GP's usually don't know it's higher in morning .. they teach them it doesn't make any difference)

if your next TSH test has gone up (or appears to have gone up :) ) the GP will be more persuaded to start treating you. So even if it hasn't 'really' gone up in 3 months time,,, it will appear to have if next test is first thing in morning ...(no need to enlighten GP on this point at the moment)

Two tests where TSH is progressively increasing are much more persuasive of worsening hypothyroidism, than two where the results are similar or the second appears to be lower ... and with negative TPOab you will need all the help you can get to be given treatment .

my thyroids profile blood test results are at the lowest range. I have all the symptoms of hypothyroidism and still, the GP refused to prescribe me levothyroxine 25mg to start with. in the meantime I feel fatigued, have puffy eyes, voice hoarseness, muscle weakness, sensitivity to cold, weight gain, and other symptoms. In general feeling of malaise.

That sounds do similar, I get sensitivity more to heat but my hands do go blue easily, always have, and none of my clothes fit I realise I may go up a size or two with age but not as much. I spend 10 mins with cold cucumber on eyes every morning but it swells again. I am now prepared that when I go back the best I will probably get is a retest in a few months in case its a fluctuation. I think I will up my vitamins then get the more detailed tests done via one of the links, but don't know how to deal with the tiredness and stress when working full time while waiting, as work has got worse recently.

It seems that the only thing doctors are less informed about than thyroid issues is nutrition. A D3 dose of 100% daily allowance (400 iu) will keep your level insufficient forever. For good health, you need a blood level of 40 - 60 ng/ml (100 - 190 nmol/L) At a dose of 5000 IU, 50% of people would reach a goal of 100 nmol/L in 3 months. At a dose of 7,000 IU, 90% of people would reach that goal in 3 months. I used this calculator to come up with those numbers: grassrootshealth.net/projec...

mrskiki profile image
mrskiki in reply to vocalEK

It definitely says 100% of daily allowance which I already take at least that in a multivit 😕 so yes it's not going to do the trick. I have stronger ones in for my partner, looks like I'll keep them for myself now!

Reading all the advice above the specific D3 are a better option than multivit, but we rarely know what were deficient in. All those birthdays I didn't know what I wanted, blood test should have been on my wish list!

TSH of 8.9 when the upper limit is 4.2 is hardly borderline. I was borderline when they first started treating me and I was nearer 4. I had antibodies, so my GP told me there was no point hanging around, I may as well start on a small dose and see how it goes. I am forever grateful as I felt I had more energy within a week of starting levothyroxine.

I expect that your GP will act on those results and if he doesn't then I think you should request that he does.

mrskiki profile image
mrskiki in reply to Ruby1

Thanks it's so helpful to hear other people's experiences and results. My antibodies aren't too high, which is good, but something isn't right and ranges seem to differ. Still getting the hang of all these numbers, takes a while at first!

When was in my early 40’s I had my thyroid checked and like you it was high at 9. I was told that I was borderline. Roll on to my early 50’s and I attended the dr a good few times for about 6 months feeling dreadful and was eventually diagnosed hypothyroid with a tsh of over 100. Go figure. They just hate diagnosing thyroid problems, plus with so many folks with them you’d think they might be learning something but hey ho. Take care. Jo xx

mrskiki profile image
mrskiki in reply to Stourie

I would love to believe its some fluctuation that will go away, but I'm not convinced. It seems a shame so many have to sit there trying to get blood samples out of our fingers to get what we need tested. Did your TPO increase at all, mine was only 9 and negative they say that won't need testing.

Stourie profile image
Stourie in reply to mrskiki

I lost all of my blood tests from the beginning. On on visit to an endo I asked if I had hashimotos and got a point blank no. Was sent to him a few years later and he said that when I was diagnosed my anti bodies were sky high, so I really don’t know. I should get copies again. Jo xx

Thanks everyone, the GP who ordered the results was back in today and called me, we had a quick discussion and they feel that due to the TSH level and my symptoms that my thyroid could benefit from a low dose medication, with me keeping on top of whether I feel better or not whilst I'm taking it and followed by a retest. She will discuss further at an appointment Friday.It was great to have been prepared, taken it in, and not to have had that blank out I have had in the past when told these things.

tattybogle profile image
tattybogle in reply to mrskiki

beware of that "start you on low dose medication" comment .

It rings some alarm bells for me . If you're lucky , it might just mean that they know what they are doing and intend to start at 50mcg Levo (and then increase in 25mcg increments following blood tests after 6 weeks on each dose .. until you feel well).

But unfortunately it might also mean they don't know what they're doing with thyroid replacement hormone ,and think that giving you just a little 'top up' of 25mcg will improve your symptoms and if it doesn't they say ' it didn't make you feel better, so you don't need it'

It's not a thing you can just 'top up' .. it doesn't work like that the body's balancing system is too clever.. so it has to be replaced until you are on enough.

see this page for GP's , and read the download on hypothyroid.

gp-update.co.uk/Latest-Upda...

"Starting levothyroxine treatment

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled...."

Actually, most of us would NOT recommend really starting at 100mcg , it may well be a bit of a shock to the system.... much more sensible to start at 50 then do 75 etc, and look at blood tests long the way done 6 weeks after dose change. BUT, if you do get one of those GP's who think they are just supposed to give you a 'low dose' and leave you on it for months .. you will be able to use this page to show that is incorrect and it's perfectly safe to start at 50mcg and go up to a full dose from there.

If the GP suggests starting at 25mcg .. point put that 25mcg is suggested as a starting dose instead of 50mcg in the elderly or those with heart complaints .. and even then, they are not supposed to stay on that dose forever, it is just used to be careful their heart doesn't struggle due to the increased activity the hormone produces.

It was all a bit faster than expected and I'm a bit slow motion at the moment as it is so need time for it all to go in. I was planning on getting my vit levels up and those extra tests done so I have my own early morning baseline inc the FT3 so will order that anyway. Its so difficult in the 10 minutes that you get with the GP so it was useful to have had the extra discussion and it gives me a chance to read up on the doses now, thanks for the help. 🌞

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