I've been experiencing odd symptoms since spring this year:
- Fatigue
- Joint and muscle pain
- Hair loss
- Irregular cycles and bleeding
My GP wanted to test my thyroid function to start with. See result below.
16/08/2024:
TSH - 4.9
As a result of this and continuing symptoms, more tests were done.
05/11/2024:
TSH - 2.87 (0.27-4.2)
Free T3 - 4.9 (3.1 - 6.8)
Free Thyroxine - 14 (12-22)
Thyroglobulin Antibodies - 1,013 (0-115)
Thyroid Peroxidase Antibodies - 462 (0-34)
I understand the thyroid function tests are all normal, but the antibodies look really high to me! My GP says they're not a problem and there's no need to action anything.
Does anyone have any advice on this? or help on how to interpret these results? Do they suggest autoimmune disease?
Thank you so much in advance.
Written by
Calypso93
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Well, sorry to say your thyroid function tests are not all normal. They are in the so-called 'normal' range, yes. But that does not make them 'normal'.
FT3: 4.9 pmol/l (Range 3.1 - 6.8) 48.65%
FT4: 14 pmol/l (Range 12 - 22) 20.00%
The easiest way to compare results is to convert them to percentages through the range, because ranges vary from lab to lab.
If the results are 'normal' (euthyroid) the TSH is around 1, FT4 around 50% through the range, with FT3 slightly lower.
Your TSH is too high, even at 2.87. (Were both tests done at the same time of day? Because TSH varies throughout the day, being highest just before 9 am and at its lowest around midday. It can also drop after eating or drinking coffee.)
Your FT4 is only 20% through the range, which is much too low for good health. Your FT3 is better but it is much higher than the FT4, a good sign of a failing thyroid - the thyroid makes more T3 than T4 to keep you going for as long as possible.
So, with those results, you are hypo. But, doctors have so little understanding of thyroid that they believe your TSH has to be over 10 before you can experience symptoms. In reality, symptoms can start when your TSH is 2.
As to your antibodies, they are nothing to worry about in themselves. They are telling you that you have Autoimmune Thyroid Disease - aka Hashi's. They are a result of that disease, not the cause.
Hashi's is an autoimmune disease where the immune system slowly destroys the thyroid, mistaking it for the enemy. There is not treatment or cure for the autoimmune element, all you can do is replace the hormone that your thyroid can no-longer make enough of to keep you well. And the sooner you can start on that, the better. No point in waiting because things are only going to get worse, I'm afraid. All you have to do now, is persuade your doctor.
That is incredibly helpful, thank you for taking the time to explain it to me!
Its interesting to see the FT3 and FT4 values converted to percentages, it makes it much clearer. I'll pester my GP with another appointment. I'm only 31 and have two toddlers so the fatigue and joint pain is the worst part of it all for me, I need to feel well and active like I used to.
I'm lucky enough that I could afford a private consultation if I don't get anywhere with the NHS GP, is an endocrinologist the right person to see?
Coincidentally, I also have coeliac disease. I've had a strict gluten free diet for around 10 years now. Do you know if this is linked somehow?
You're very welcome. And please don't apologise for asking questions, it's the only way to learn.
If it's of any help, you probably developed Hashi's after your first baby. That's when it starts for a lot of women. But there's nothing you can, or could have done about it.
A lot of Hashi's people also have Coeliac Disease, but as far as I know, the only connection is that if you have one autoimmune disease, you're very likely to develop another.
Not all endos are created equal. A lot of them know absolutely nothing about thyroid, so you have to chose your endo carefully. And those saying they are 'thyroid specialists' aren't necessarily so. Ask on here for recommendations in your area - by PM, because we're not allowed to discuss individual doctors on the open forum.
I don't get anything tested annually, the GP has never mentioned any of that before!
I don't take anything supplements. I had to have an IV iron infusion during my second pregnancy as I was so unwell, but since then no one has mentioned it.
I'll be on at the GP on Monday, thanks for this info!
Hey Calypso, I'm sorry you're feeling so rubbish with 2 little ones to look after. GG did mention timings of blood tests above but I just want to reiterate how important it is to have thyroid tests before 9am. The difference in your TSH might mean being in or out of the range and so the GP actually taking it seriously. I'm sure this is partly what scuppered me for years!
Take care and keep on at them but yes do go private of cost not an issue as you might wait a very long time for the NHS to help you x
Hiya, thank you for the sympathy! I think when young mums say they are fatigued it often gets written off and not taken seriously.
I'll definitely remember this next time they take a blood test. Our phlebotomy department opens at 8am so I'll get there for opening time and only drink water before then.
the raised antibodies show you have autoimmune thyroid disease which causes damage to the thyroid gland , but there is no treatment available for the autoimmune aspect .
The resulting hypothyroidism can be treated when it get's bad enough to show in blood results, but since your TSH is now back within the normal range the NHS are unlikely to be willing to start treating you yet.
Their guidelines require you to have 2 over range TSH results , taken 3 months apart, plus symptoms (to rule out a transient rise in TSH from some other cause).
due to the autoimmune process , it is highly likely your TSH will continue to rise and fT4 levels gradually fall as your thyroid is damaged over time
unfortunately going private at this stage to try and get levothyroxine prescribed before NHS are willing to can create difficulties for you in the future ~ if you are prescribed levo privately (before TSH is documented to be consistently over range) , you may find the NHS unwilling to accept this diagnosis unless you come back off levo for long enough to allow TSH to rise over range ( which can take several months while you feel lousy again )
So even though it's immensely frustrating when you are already struggling, you may be better off waiting another 2/3 months and asking GP for retest to see if TSH has risen over range again so you then have an NHS diagnosis.
NOTE ~ TSH is highest early am. and falls to it's lowest around 1-3pm every day, then rises again. Eating breakfast / coffee can lower TSH a bit in some people...so for next thyroid blood test , get it done as early as poss, 9 am is ideal , and fasting ( NHS won't agree this protocol is necessary , but it's the best way to make sure they are seeing the highest TSH level of the day.)
NHS guidelines for when GP's can start treating subclinical hypothyroidism below :
( 'subclinical' hypothyroidism is defined as TSH over range while fT4 is still within range)
"1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1
Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2
When 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
1.5.3
Consider 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.
1.5.4
Consider 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."
If your GP is stubborn and won't treat you for hypothyroidism one thing you can do for yourself to make the wait for treatment more bearable is to optimise as many nutrients as possible. You would be surprised at how bad low nutrients can make you feel.
Hypothyroidism often "dries out" the body and so people end up with, amongst other things, low stomach acid making it harder for the gut to extract nutrients from your food and levels end up being low. Coeliac disease makes this problem even worse.
Unfortunately, doctors aren't taught about nutrition, and if (made up) Vitamin X has a reference range of 20 - 100, your doctor will think a result of 20 is fine, when actually you might feel best with a result of 90. This kind of logic applies to most nutrients, although different nutrients have different optimal levels which aren't always at the top of the range.
So, we always suggest optimising, as a first step, Vitamin B12, folate, vitamin D, ferritin (iron stores). I always think it is a good idea to test an iron panel rather than just ferritin, because iron is a complicated nutrient and just having optimal ferritin doesn't guarantee that other iron-related factors are optimal too.
In the above link this quote tells you about optimal ferritin :
Normal ferritin levels for women are between 20 and 200 ng/mL. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.
Vitamin D : 100 nmol/L
Serum Vitamin B12 : 1000 nanograms/L
Active B12 : 100 pmol/L
Folate : 20 micrograms/L
Although not something to worry about immediately, if you can also test the following at some point (your doctor might do these for you) it might help :
Zinc
Copper
Selenium
Iodine is often mentioned in connection with thyroid disease, but few of us ever test it. If you are interested then the best way to test iodine is as a non-loading test, and it can be tested in urine or possibly blood. Ignore "patch tests" for iodine - they are a total nonsense - and loading tests are useless too.
If you discover that your iodine levels are low, you'll have to ask for help on how to supplement and what to supplement with in a new post. I have never tested or supplemented iodine myself.
.
Magnesium is also important, but testing it is pointless because the tests are unreliable. If your kidneys function effectively then they will excrete excess magnesium. Only about 1% of the body's magnesium is found in the bloodstream, and if the level becomes too low the body will "steal" magnesium from other places like the bones and muscles. So magnesium could look great in the blood but be deficient elsewhere. We usually suggest that people supplement magnesium if their kidneys are functioning.
To see the distribution of magnesium in the body, see table 2 in this link :
When I was getting nowhere with my GP re my thyroid levels, I referred her to the reply I had received from Thyroid UK (ie this forum's knowledgeable admin) and she quickly changed her tune! Btw, my Hashimotos kicked off with my first pregnancy and took over four yrs+a private consultant to address my awful symptoms!
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