Help with interpreting test results: Hello! I'm... - Thyroid UK

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Help with interpreting test results

sa67 profile image
sa67
11 Replies

Hello! I'm new here and have already learned so much - I was wondering if anyone could help with fathoming what is going on?

I'm a 34 year old woman. I initially went to the GP in August with an irregular heartbeat and a very sudden onset of general anxiety/physical feelings of doom, as well as trouble tolerating heat. He did an ECG and bloods and said all was fine. About 6 weeks later I was still feeling really ropey, with additional muscle twitching all over, and trembling sensations in my hands (although no visible tremor). At that point, after a chat with a nurse, who suggested it all sounded 'a bit hormonal', I checked the blood results from August to see what had been tested, and found:

TSH was 0.04 (standard range 0.35-5.5mU/L)

Free T4 15.7 (standard range 10.5-21.0pmol/L).

After some googling I found that my symptoms and results matched subclinical hyperthyroidism, and made a follow-up appointment with another GP. They retested my TSH and free T4 in October and this time found:

TSH 6.56 (standard range 0.35-5.5mU/L)

Free T4 12.2 (standard range 10.5-21.0pmol/L)

And also tested my Thyroid peroxidase antibody, which was >1,300 iu/ml (standard range 0-60 iu/ml)...

Their conclusion from this is that I have Hashimoto's, and my thyroid will fail at some point, at which stage we'll try to catch it quickly and start hormone treatment. My symptoms are still very much on the hyperthyroidism side, and I'm finding them really difficult to bear, particularly the (totally uncharacteristic) anxiety. The GP tried me on 80mg of slow release propranolol to help with the symptoms, but I found that the anxiety was getting worse, my sleep was interrupted, I was having stomach pain and couldn't stay awake in the afternoon, so came off them after 4 days. I'm also now having weird pressure headaches in the back and sides of my head, and a little dizzy/vision's a bit off-kilter (this coincided with covid booster though, so may be a red herring). Also am really fatigued.

Does this look like a period of hyperthyroidism at the start of Hashimoto's hypothyroidism? Is there anything else I should be doing? At the moment I'm just trying to ride it out and wait for my next follow-up and bloods in 2 months, hoping it'll settle itself in the meantime, but that's not easy... I've been referred for CBT, but not sure it'll be a huge amount of help given that the anxiety feels very, er, 'biological', rather than thought-driven.

I also have Psoriatic arthritis (currently flaring), and Sjogren's (although the latter not confirmed via bloods - I think just on the rheumatologist's hunch about my dry painful eyes), diagnosed late 2018, and congenital heart valve disease (repaired in 2018).

Thanks in advance for any input!

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sa67
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11 Replies
greygoose profile image
greygoose

Hi sa67, welcome to the forum.

What time of day were the blood draws for the two blood tests? TSH results are affected by the time of day - highest before 9 am and lowest around midday. Something that doctors don't seem to understand and don't take into account!

But, of course that doesn't affect antibodies. They are very high, so you do have Autoimmune Thyroiditis - aka Hashi's. And, another thing that doctors cannot get their heads round is that if your TSH is over six (over-range, even) your thyroid has already failed! A normal TSH would be around 1.

However, neither set of results suggests hyperthyroidism. Yes, your first TSH was very low, but a low TSH on its own is not hyperthyroidism. Your FT4 was low enough to suggest hypothyroidism. That said, you could have recently gone through a period of hyper, and the TSH was just taking its time catching up with the thyroid hormone. It does react a lot more slowly.

But, beware of symptoms, because there is not a rigid barrier between hypo and hyper symptoms. Most of them cross over. Anxiety, for example, is very much a symptom of hypo, although you can have it when hyper.

Propranolol is a silly thing to give someone who's hypo. It reduces conversion of T4 to T3, meaning that the person gets more hypo. That's probably why you didn't feel well on it.

If I were you, I would go back to your doctor and tell him that NICE guidelines say that with high antibodies and over-range TSH, he should start treatment straight away. What's the point of waiting? You are hypo as soon as your TSH reaches 3, and in some countries would be treated at that point. Seems the sadists in the NHS just want to prolong your agony! But why go on suffering when it's really not necessary. He can have absolutely no justification for not starting treatment straight away. They know it's only going to get worse, and definitely not 'settle itself down'.

sa67 profile image
sa67 in reply to greygoose

This helps to clarify a lot, thank you. The first bloods were taken mid-afternoon; the second around 9am. The propranolol was started prior to the second round of bloods - so before I appeared hypo. I think the rationale for not starting treatment just yet was that they felt levothyroxine would make the anxiety worse? All I could find in the NICE guidelines was that symptoms + TSH above standard range but under 10 would need to be confirmed in two blood tests across 3 months before trialling levo - and I think they're sticking very much to the book...

greygoose profile image
greygoose in reply to sa67

Highly unlikely that the levo would make the anxiety worse if your anxiety is a hypo symptom. That is just an excuse, not a reason, they're just fobbing you off.

Pretty sure I saw somewhere that it said the antibodies were important to diagnosis and start of treatment. But, couldn't tell you where.

shaws profile image
shawsAdministrator in reply to sa67

I have found (and also with comments on this forum) that few GPs are aware of any clinical symptoms when the patient has a dysfunctional thyroid gland.

Even with a TSH of 100, GP phoned to tell me that I had 'no problems' and results o.k. I cried as I was feeling very unwell and remained undiagnosed.

I was completely unknowledgeable about a dysfunctional thyroid gland but so were the people I consulted for quite sometime. It was a first-aider who suggested I should get thyroid hormones tested.

(if you want to read my biography click on my name and it will take you to my page).

SlowDragon profile image
SlowDragonAdministrator

You need FULL thyroid and vitamins tested

Propranolol will significantly alter thyroid test results

Suggest you wait minimum 6 weeks after stopping Propranolol before retesting thyroid levels

Have you had vitamin D, folate, B12 and full iron panel test for anaemia including ferritin

If not request GP does testing NOW

Plus GP should run coeliac blood test too

Come back with new post once you get results

Book next test for thyroid levels early morning around 9am

sa67 profile image
sa67 in reply to SlowDragon

Thank you for the info. I've had iron and ferritin tested, but not the vitamin levels (or coeliac), so will pursue that.

SlowDragon profile image
SlowDragonAdministrator in reply to sa67

what were iron and ferritin results?

sa67 profile image
sa67 in reply to SlowDragon

RBC: 4.02 10*12/L (3.90 - 5.20 10*12/L)

Hb: 130 g/L (120 - 156 g/L)

Hct: 0.378 L/L (0.355 - 0.455 L/L)

MCV: 94.0 fL (80.0 - 99.0 fL)

Ferritin: 56.3ug/L (10.0 - 291.0 ug/L)

SlowDragon profile image
SlowDragonAdministrator in reply to sa67

So ferritin is low and likely to drop further

Look at increasing iron rich foods in your diet to try to improve ferritin levels

Low vitamin levels tend to lower TSH and improving vitamins can improve symptoms

2 separate blood tests at least 6 weeks apart with TSH over 5 and high thyroid antibodies and symptoms should get you started on levothyroxine

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Always test thyroid levels early morning for highest TSH

SlowDragon profile image
SlowDragonAdministrator

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease 

1.1.1 Offer serological testing for coeliac disease to:people with any of the following: 

persistent unexplained abdominal or gastrointestinal symptoms 

faltering growth

prolonged fatigue 

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes,

at diagnosis autoimmune thyroid disease,

at diagnosis irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease

rosetrees profile image
rosetrees

Imho, prescribing propanolol is poor/lazy medicine, verging on incompetence. It does nothing to address the cause of your symptoms - whatever that cause may be. Having been both hypo and hyper I can confirm that the symptoms can appear similar, although once you've experienced both it is relatively easy to tell which you are.

You could try suggesting to your GP that you try a low dose of levothyroxine (T4) to see if that helps. That's what I did originally. A racing heart was one of my main symptoms for many years.

Another clue is low body temperature. Do you know what yours is? Mine raised by about 0.8 deg C when I went on thyroxine.

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