My thyroid has been under suspicion for many years but I cannot seem to get any answers. Postnatally, (four months after giving birth), some fifteen years ago, my TSH was tested and was 12.6. Nothing was done about this. ( I have only just seen this on my NHS app). Fast forward to eight years later and my TSH was 5.40 and TPA greater than 1300. I know that my TPA usually is around greater than 400 and my TSH stays just around 4-5. I have a goitre with diffused nodules which I have ultrasound scanned twice. I had a Medichecks thyroid screen in 2022 where my TSH was found to be 4.9 and TPA was 407. My free T3 was 4.51 and my free thyroxine was15.8, both in normal range.
I have had an NHS phone appointment where I was basically told that many women of my age would have some thyroid-type symptoms and was instructed to contact my GP if breathing became difficult, (because of goitre). I also went privately to get some answers but the consultant was very dismissive of me and said that some people get goitres and then proceeded to tell me all about Derby Neck!
I am at a loss to now what to do. Mostly I feel like I am 'worried well' and making a fuss over nothing. I have days when I am truly exhausted, lacking in any kind of energy or drive. I have had periods of diffuse hair loss, (eventually diagnosed as Telogen effluvium with crashing iron levels too). I am now starting to lose the outer edge of my eyebrows, my skin and scalp itches and as I say, my energy levels and mood can feel low some days. I am peri-menopausal and was prescribed HRT privately. I have not taken it though. The doctor said to see if the HRT helped and then to look at TSH at a later date. That feels the wrong way round to me. Can anyone suggest if I am worrying unnecessarily or whether I should push, yet again, for further investigation?
Thanks in advance.
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Gyrosgirl
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Hi , brief reply cos it's way past my bedtime , but there will be more people around to help in more detail in the morning.in the meantime :
if your TSH is over range (is it ? what was the lab range for the GP test you've had ? ) but T4 is still in range , then it is termed 'subclinical hypothyroidism ' and if the patient has symptoms of hypothyroidism (which you clearly do ), then NHS GP's can treat it once they have 2 over range TSH results taken 3 months apart (to rule out a transient rise in TSH from another cause.. clearly unnecessary with your history)
and with TPOab (TPA) over range and a goitre ..... yes it's hashimoto's .
"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."
Thank you to all who replied. I have just been told that the TPO result means that I 'might develop autoimmune hypothyroidism in the future'. They seem satisfied that my TSH hovers around the normal range so therefore I am not affected by it sufficiently. My goitre is quite one sided but pronounced and visible so I am not sure about the reticence I have been met with. Thanks again
Do you feel you have any classic symptoms of hypothyroidism? If so, with your results, I think you need to push the NICE guidelines above to have trial of levothyroxine.
I certainly have periods of energy drain and low mood. Some days by about ten am I know that the day will be a write-off. These fluctuate though. I have been colder than everyone else forever, wearing several layers when others are in t-shirts, however this has changed since I have become peri-menopausal and I generally feel a bit warmer than in the past. I have weight gain, especially on my stomach, hair loss and as I said, eyebrows now disappearing. I guess the words 'sluggish' and 'lacking in impetus' would describe me. I will ask for a blood test again and see what those results are. Thanks again.
"They seem satisfied that my TSH hovers around the normal range so therefore I am not affected by it sufficiently. "
have a look at the graph in this post.... and see if you agree that TSH of 4-5 is around normal .... it's clearly not ..... 1-2 is much more normal and hardly anyone healthy had a TSH of 4 let alone 5
your repeated TSH of 4-5 (assuming it is over the lab range ) , plus TPOab of 1300, plus classic symptoms of hypothyroidism does qualify you for a trial of Levo .
if they used the words " 'around' the normal range" then i strongly suspect that it IS slightly over their lab range (other wise presumably they would have said "it's in the normal range") ... most TSH ranges are approx 0.4 -4.5 ish but you need to find out what range is used for the test your GP is looking at . as it gives you a much stonger argument if it's actually over range,
assuming it's over 3 mths since you last has a GP test for thyroid , ask for another one now based on classic hypothyroid symptoms and strongly positive antibodies.
once a GP has seen the result ,you can ask GP reception for a printout of the thyroid test result ... including lab ranges . don't accept the receptionist saying "comment says it's normal/ no action "... just calmly repeat the request for the actual result and lab ranges..... if they say why do you want it , just say 'for my own records'.
edited to add ... sorry forgot to mention ... TSH is naturally highest very early am and falls gradually to it's lowest everyday around 1-3pm , then slowly rises again .
To help in getting treatment you want GP to see the highest TSH of the day not the lowest .. so when you have blood test .. get one at 9 am ish the earlier the better , (even if it means waiting weeks for an appointment at that time) . and don't eat breakfast before test , as this can lower TSH in some people.
GP's and receptionists will confidently tell you that time of test makes no difference and you don't need to fast for a thyroid test ... if they read any research they would know this is incorrect. However it's not worth the stress of an argument ...so just say you have work comittments and so can't get to a blood draw appt after 9 am
the evidence for fasting/ early morning tests is in the 3rd and 4th replies to this post : healthunlocked.com/thyroidu.... -list-of-references-recommending-gps-keep-tsh-lower-in-range
Request/politely insist that vitamin D, folate, ferritin and B12 levels are tested
Highly likely your vitamin levels are low as direct result of being hypo
Low vitamin levels tend to lower TSH
ALWAYS test thyroid early morning, ideally before 9am, only drink water between waking and test …..to get highest TSH
You should also have had coeliac blood test done
Have you?
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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
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
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
Thanks both tattybogle and SlowDragon for such comprehensive answers, I really appreciate them. I will ask for another blood test and I may be able to go to the phlebotomy clinic at my local hospital so might be able to choose a first thing in the morning appointment. I have never been tested for celiac disease and didn't really know about the connection between gluten and Hashimoto's. I eat loads of carbs as I naturally gravitate towards them and don't eat much meat. Meals are healthy enough but often carb-heavy. Looks like I am going to have to rethink what I am eating too. I would be thrilled if I could generate a bit more energy. I will read the articles that you have linked too. Thanks again for taking the time to reply 🙂
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