Underactive thyroid - how difficult is this to diagnose?

Peppergirl

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I pushed for a referral to an endo which was due this month, but it was cancelled due to the lock down. Symptoms: acne forever (I'm now 42 and it's still a problem), fatigue, irregular periods, brittle dry hair and hair loss, feel the cold massively, like, can't get warm when everyone in the office is boiling, etc. Also, carpal tunnel out of the blue, weird as sugars normalised but, dunno. Also PCOS which apparently is at a low level according to a dermatologist I've seen, but GP told me everything is fine. I've been trying to get to the bottom of this for over a year, but symptoms for years.

Can you shed any light on these results? All have increased - now abormal except TSH. I pushed for an antibodies test and this came back as abnormal too.

serum free T4 18.5 pmol/L (increased steadily since 2015 and shot up 2019) - this is now 'abnormal'
Serum TSH 5.14 mu/L (increased from 1.92 in 2013) but this is 'normal'
se thyroid peroxidase Ab conc (antibodies) = 66 iu/mL which is 'abnormal' (range is 0.1 - 9, so very abnormal?)
 

sleepster

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Hi @Peppergirl, I started taking levothyroxine in January, my thyroid function test came back as abnormal last year but as I didn't have any "obvious symptoms" I was given the option to try medication or leave it and see if anything changed. My serum TSH had decreased this time but I was cold all the time, nothing I did would help me warm up (my husband would be in bed in a tshirt complaining about being too warm, while I had 3 hot water bottles, massive fleecy pyjamas, extra blankets and would still be shivering) so I asked my GP if I could try the medication and luckily she agreed. I've since had my dose increased and it's so nice to be warm, it was making me so miserable being cold all the time.
I would have thought if you asked your GP for medication, they should let you try it to see if your symptoms improve?
 
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DCUKMod

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I pushed for a referral to an endo which was due this month, but it was cancelled due to the lock down. Symptoms: acne forever (I'm now 42 and it's still a problem), fatigue, irregular periods, brittle dry hair and hair loss, feel the cold massively, like, can't get warm when everyone in the office is boiling, etc. Also, carpal tunnel out of the blue, weird as sugars normalised but, dunno. Also PCOS which apparently is at a low level according to a dermatologist I've seen, but GP told me everything is fine. I've been trying to get to the bottom of this for over a year, but symptoms for years.

Can you shed any light on these results? All have increased - now abormal except TSH. I pushed for an antibodies test and this came back as abnormal too.

serum free T4 18.5 pmol/L (increased steadily since 2015 and shot up 2019) - this is now 'abnormal'
Serum TSH 5.14 mu/L (increased from 1.92 in 2013) but this is 'normal'
se thyroid peroxidase Ab conc (antibodies) = 66 iu/mL which is 'abnormal' (range is 0.1 - 9, so very abnormal?)

Many, find their under active thyroid is very evident, but they remain undiagnosed. It took me several years to be diagnosed, although I am atypical in many ways.

Looking at your results. To be honest, TSH is often used as a diagnostic metric for thyroid disease. Yours at 5.14 is elevate. Anything over about 2.5 suggests the individual's thyroid is struggling. However, your thyroid peroxidase antibodies are rather high. I wouldn't say they are very abnormal. I have seen people report levels in 4 figures, but yours are out of range by some margin.

Elevated thyroid peroxidase often suggests Hashimoto's Thyroiditis https://www.nhs.uk/conditions/thyroiditis/

upload_2020-4-24_22-40-48.png


As the NHS site states, Hashi's is usually treated by Levothyroxine, however your FT4 is already in a decent place in range, so the medics may prefer to monitor you for a while and see what happens there.

Typically, your T3 hasn't been tested, and that's a shame, as it leaves out an important art of the thyroid jigsaw. Peppergirl, in my experience, nothing relating to thyroid anomalies happens fast, due to the sensible periods between tests.

It took me a few years to be diagnosed, and even then I was titrating thyroxine for almost 2 years before seeing an Endo for the third time. He eventually prescribes me further meds, in September.

The thyroid is a very important element of our metabolic health, and when it goes off-kilter it can leave us feeling wretched.

To be clear, I am not a medic, just someone who has learned a lot about hormones and particularly the thyroidhormonse on my journey through all this. Of course, neither I nor anyone else here can diagnose you.

It's a real pity your specialist appointment has been deferred. I have one next week, which I was informed today will still take place, but by telephone. Having met the Endo a few times, I'm OK with that. It's less than ideal, but I'm keen to see him sometime soon, so I accept it.

For you, on a first time appointment, the Endo would really want to see you, so that he can examine you, as well as listen to your story and review your blood tests.

On my meandering path to diagnosis, my GP took advice several times from the Endo Department, via email, so maybe this is something your GP could do, to see if there is anything you can be doing in the interim. If your appointment transpires to be more than 8 weeks on, in your shoes, I'd want fresh blood tests done. You wouldn't need the antibodies done again,as whilst those can and do vary, that you have elevated tPA once is usually acceptable.

If you are keen to learn more about thyroid, then I recommend Health Unlocked thyroid forum. There are some fabulously knowledgeable people over there who have helped me enormously. https://healthunlocked.com/thyroiduk

Good luck with it all. I had the temperature regulation issues, and still do, to a much lesser extent. Being cold to the bone, when it's plenty warm enough is miserable.
 

Peppergirl

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208
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Type 1
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thanks @sleepster & @DCUKMod really good advice. I know it takes some time to diagnose. I went for years without realising I was experiencing symptoms of MS (thinking everything was diabetes related) so determined to get a diagnosis ASAP. I'll persevere with the GP.
 

DCUKMod

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thanks @sleepster & @DCUKMod really good advice. I know it takes some time to diagnose. I went for years without realising I was experiencing symptoms of MS (thinking everything was diabetes related) so determined to get a diagnosis ASAP. I'll persevere with the GP.

Peppergirl - Having had a good review of my own thyroid bloods this morning (coincidentally, I have a review on Friday, so it needed to be done anyway), I notice, in this area, our assay range for Thyroid Peroxidase is <60, so really very different to yours? I wonder if it could be worthwhile having a look to check, just before reaching too many conclusions.

Of course, even at <60, your 66 is still out of range, but modestly so.

In terms of time frames, here is an image of my thyroid bloods for the period of proper scrutiny. I use proper scrutiny becuase it took a long time to even get to testing for me. My major symptom was (and is) temperature regulation. I could be in mid 30s centrigrade and need a cardi or fleece, which is quite a stretch from "normal", but for a long time, the medics' arguments were that was due to me spending a lot of time in the Tropics, and losing weight. I went to the extent of pausing travelling for a year (which was a real, reall challenge for me) to disprove that particular hypothesis.

I've routinely filled the cells on all my blood tests for where I am on ranges, for quick reviews. The blue cells indicate firstly where my GP granted me a trial of Levothyroxine, but under NHS guidelines could not diagnose me as hypothyroid. The second blue cell is when the Endo granted me a trial of T3, and eventually based on all factors, formally diagnosed me as hypothyroid.

It's bee n quite a trip, to be honest. Very frustrating at times, and just miserable at others.

So, do keep on at your GP for regular testing. Looking back, I'd now have wanted testing every 2 months, to track the direction of travel. Once on Levo, I had bloods roughly every 6 weeks for titration purposed. On T4, doses can realistically shouldn't be changed any more frequently than 6-8 weeks.

I do hope, with your history of auto-immune conditions, you will manage to trigger better help more quickly than I did, but whatever you do, don't give up..

upload_2020-4-25_11-41-11.png


(Oh, the light blue shaded column are tests done overseas.)

(oh, oh,.......... and finally, before I bore you rigid; there is a survey used in certain quarters - the SF-36 Questionnaire, which is used to track health, symptoms, mental position etc. I wish I had found this prior to having to fill it in. I have one to complete prior to my next appointment.

If you can't find it online, I could probably post a blank copy of it on here.)
 
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Peppergirl

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Messages
208
Type of diabetes
Type 1
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Insulin
hi @DCUKMod thank you so much for your response, it's great detail and really helps! I double checked the range for the antibodies test on my results and it's 0.1-9, so interesting that yours are very different. One of my questions back to the GP. SF 36 questionnaire - looking into it now. Much appreciated.
 

Resurgam

Expert
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Type 2 (in remission!)
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I had numerous tests for thyroid levels even though I had all the symptoms of failure, was told they were all fine, until one time I went in and the GP looked at the results and said 'there is something very wrong' - well my cardio vascular response to alarm is just find thank you very much. What she meant was that finally the results showed low thryroid function and a frantic pituitary with the TSH at about four thousand times the normal level.
Over the years I noticed that when my supplement needed to be increased my eyebrows shortened, no longer reaching the outer edge of my brow ridge. Add more Thyroxine and they grew back. Some time later I got hold of the old medical books from home (they were always kept hidden away when I was younger) and discovered that it was a symptom that was looked for in years gone by. Reduced body temperature and the slow growth of hair and finger/toe nails were other symptoms. The cure was minced thyroid glands back then of course.
 

Daphne917

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3,320
Type of diabetes
Type 2 (in remission!)
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Diet only
Like @Resurgam I had regular tests for about 30 years as my GP was convinced my symptoms were caused by an underactive thyroid but they came back as borderline, under or, a couple of times, over! I had been told by an endocrinologist 30 years ago that my thyroid function was all over the place (I had a monthly blood test for 6 months with 3 different results) and it could be a while before it made up its mind as to what it was going to do. I was eventually diagnosed after two tests with the same result indicating hypothyroidism about 7 years ago and started on 50mg of Thyroxine daily.
 

DCUKMod

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@Peppergirl - I can't recall if I've put in here anywhere, but when having your bloods done, have them done fasted, as early as you can in the morning.

TSH, in particular (but many hormones are circadian to a greater or lesser extent) drops during the day, so it can be unhelpful when trying the be diagnosed, to have bloods done randomly.

As a matter of course, all my bloods are drawn, fasted, at 8am, then I know I have conditions as similar as I can achieve, and therefore they are towards a valid comparison form the last, or generally previous lots.