So confused

[Gilli0766]

Hi I've had underactive thyroid for over 30 years. I take 225 mcg per day long term. Not been well lately and my bloods now show normal t4 and tsh very low at 0.14. Docs say all it means is im taking too much levo ? Is this true and as simple as that? Can my thyroid suddenly get better ? Shouldn't he be looking for the reason ?. Thanks Becks 🥰

[SeasideSusie Remembering]

Gilli0766

Just testing TSH and FT4 isn't giving a full picture of thyroid status, ideally we need TSH,FT4 and FT3 all tested at the same time. If thyroid antibodies have never been tested it's useful to test these too to see if your hypothyroidism is autoimmune.

Also helpful is to test Vit D, B12, Folate and Ferritin. All these need to be at optimal levels for thyroid hormone to work properly.

Just saying that your FT4 is "normal" doesn't tell us anything other than it is somewhere within the reference range; however, it's where in the range that is important. Do you have full results, with reference ranges, that you can post? If not then ask the receptionist at your surgery for a print out, the ranges should be on there next to the results. In the UK it is our legal right to have our test results without question or charge.

Your TSH may be low, even below range, but it is not suppressed, suppressed is below 0.1

And no, after 30 years your thyroid isn't "getting better", it can't regenerate, hypothyroidism tends to be for life unless it is transient such as post-partum thyroiditis can be.

[Gilli0766 in reply to SeasideSusie]

Hi thanks for the reply. I hear what you are saying as I've already mentioned this to the doctor but he is saying the only issue is im taking too much so take less and it will be ok. When I challenged it and said surely there's a reason . He huffed and tutted and said I dont know what I'm talking about lol. Maybe I should get a new gp 🤔

[SeasideSusie Remembering in reply to Gilli0766]

Gilli0766

Get your results first. Post them, with their reference ranges, on the forum. We will comment. Without seeing them we can't say whether we agree that you are taking too much.

Not been well lately and my bloods now show normal t4 and tsh very low at 0.14

Have you been unwell related to your thyroid or something else?

What were your results before if you're saying FT4 is normal now and TSH very low. How have they changed?

When I challenged it and said surely there's a reason

A reason for what?

Once we see your results and you give us some more information, we should be able to give you meaningful replies. Then you have the choice - educate the GP you have or maybe find one that understands how to treat hypothyroidism.

[Gilli0766]

Thanks so much 🙏 I will do 🥰

[tattybogle]

an interesting question would be .. "has your TSH/fT4 always been near that level , or has it changed significantly in line with when you felt off"

Is it a different doctor to previous ones who may have said "you are fine at that level",

Is the low TSH just the first reason the GP could come up with for you feeling off, without checking if it's actually changed from your 'normal'

Did you have any symptoms that might relate specifically to overtreatment ,Sweating , fast pulse, over anxious, trigger happy reflexes, frequent bowel movements etc ?

It IS possible that for some reason you are now using up / needing less thyroid hormone than before , rather than that your thyroid has 'got better' (they don't tend to do that as such) .. but we do change all the time through life.

Is menopause a consideration ? that can change thyroid hormone factors.

When i was in your position a year ago i asked for all my historic blood tests , and Gp appointments/outcomes for the entire time from a few years before hypothyroid diagnosis , by filling out an SAR (Subject Access Request) it takes about 28 day's, and you need to provide proof of ID... then they give it you all on a secure disc.

The knowledge gathered from these hasn't totally solved my own personal 'riddle' yet, but has allowed me to know what i'm talking about with GP with confidence , an has allowed me (with his agreement) to correct my dose from when he lowered it too much.

So it may be worth you doing an SAR, since you have such a long history of results to learn from.

[Gilli0766 in reply to tattybogle]

Thanks thats a very helpful. Levels always been normal with my levothyroxine dose . I started feeling exhausted and have a skin rash for 8 weeks. So begged docs to do some tests . His diagnosis from my suddenly low tsh levels is merely that I'm taking too much. Various diognoses for the rash but nothing has worked. Im menopausal..have pressure somewhere in my throat..looks swollen, doc just ignores that. Only other thing wrong was I have a swollen optic nerve but mri showed no reason why. Ive just paid for a full thyroid test and will see the outcomes I guess. I feel very poorly right now with bad headaches and exhaustion.

[tattybogle in reply to Gilli0766]

Unfortunately , a report of 'normal' gives you no really useful information.

most TSH ranges are in the region of [0.4 -4.5] or thereabouts, anything from 0.5 -4.4 will have been reported to you as 'normal', but there is a vast difference between these two thyroid states.

A common fT4 range is [12-20] anything from 12.1 to 19.9 will be reported as normal , bur again there is a vast difference in how you would feel.

These ranges are based on the entire population , but as individuals we have much narrower personal set points for optimum operation ... eg. your own 'normal' may be at the low end of the fT4 range, so if you had 18 , you would feel off, but be told 'normal'

However , i can see your difficulty re getting hold of lots historic results, it's enough of a pain getting them out og the NHS , without having to deal with the military too. .. Good luck!

My previously stable thyroid results have gone wonky a few years post menopause.. for no obvious reason , iv'e had one reduction from 150 to 125 , i did probably need a slight reduction , but with hindsight i think it was perhaps too much of a drop. And then since then i've had another drop from 125 to 112.5 to 100 and back to 112.5.

For 15 yrs my fT4 was top part /slightly over range , and my TSH was very bottom /slightly below range. but that was where i felt better.

Then a few yrs after menopause and the drop to 125, m fT4 kept rising despite dose staying same . TSH not affected much.

No answers for you , but just letting you know , menopause is a reasonable suspect for dose requirements going wonky. ( this is logical as Estrogen does have a relation to thyroid hormone activity,)

The 'Throat Pressure feeling' is mentioned often on here, i have it nowaday's but never used to until this year, don't know why.

I did as asked and reduced dose, from 112.5 to 100 but once it became clear it made me worse i asked to be put back up to 112.5 regardless of my 'out of range' results. and since then ,on same dose my results have come back to levels GP is happy with.

[Gilli0766 in reply to tattybogle]

Also reference my records . Most are missing due to being in military for so long and still trying to get it all sent to my current doctor now we are civilian 🤔

[Miffie in reply to Gilli0766]

That really should not be a problem. I moved from the service docs to a civvy GP about a year before my husband was due to finish I don’t remember any issues at all. Just obviously less money available to GPs and hospitals. When my he left his records were equally efficiently moved.

I had a horrendous delay between civilian practices following a house move about 5 years ago. I found out it was a ‘clerical misunderstanding “ at the previous surgery. Well worth keeping on top of.

I was lucky enough to have a fabulous doctor when menopausal. I had quite significant fluctuations in thyroid results which she dealt with as and when required. My thyroid was destroyed by radiation when a baby / toddler so no Hashi issues however I have needed changes in level of replacement over the years. Post menopause I was on 500mcg a day. I do think the menopause hormone changes do affect our thyroid replacement hormones.

Good luck getting those records and feeling better.

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate

Many people on levothyroxine will have extremely low TSH

Most important results are ALWAYS Ft3 (not been tested) followed by Ft4

If Ft3 is not over top of range you are NOT over medicated

Low vitamin levels tend to lower TSH

TSH is also significantly affected by time of day when test was done

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

About 90% of primary hypothyroidism is autoimmune thyroid disease. Do you know if you have this

What vitamin supplements are you currently taking

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 .

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)

Is this how you do your tests?

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 antibodies and vitamins

medichecks.com/products/adv...

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 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

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...

TSH is only classed as suppressed if below 0.03. Even then that doesn’t necessarily mean over medicated

See replies by Diogenes in this post

healthunlocked.com/thyroidu...

the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.