38 yr old female diagnosed with hypothyroidism (2011), endometriosis (surgery in 2019), pernicious anaemia and PCOS (lower end of spectrum diagnosed 2024).
Had stressful job in 2023 that triggered bunch of health issues. Since Aug 2023 I’ve gone from healthy, physically fit (powerlifting 125kg) to constant fatigue, muscle weakness, rapid weight gain, brain fog, absent periods, dizziness and low libido.
GP has referred for gynaecology specialist and chronic fatigue. However, it all seems to connect to same time as my thyroid meds were doubled and then diagnosis of pernicious anaemia followed.
So recently I had private advanced thyroid test carried out and that’s flagged high level of antibodies TgAB 431. However everything else is normal: TSH 3.15, FT4 19.8, FT3 4.9, TPOAb 14.5, T4 94.
Here for help and advice understanding these results and what to ask GP for in managing things going forward.
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Nem14
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You are hypothyroid because your TSH is too high most people’s is 1 or lower. Also you have high antibodies which means you have autoimmune thyroid disease. In other countries you are treated once your TSH reaches 3 in the UK they wait until your TSH is over 5. Most doctors will wait a further 3 months and then retest your TSH just incase it was a blip.
I would push for treatment because you have high antibodies and you will continue to feel worse. What I don’t understand is why doctors are so reluctant to treat people who obviously have hypothyroidism because Levothyroxine is as cheap as chips. I am not medically trained but I have studied thyroid disease for over 10 years. This was because every doctor I have ever seen has little or no knowledge of what or how to treat thyroid disease. Let us know how you get on with your GP and I hope he/she sees sense.
yes hypothyroid diagnosed 2011. Antibodies are new fact having privately tested due to chronic fatigue and massive health changes since Aug ‘23. My thyroids meds levothyroxine doubled in Feb 24 after a bunch of general testing to try find route of fatigue.
I pushed for B12 to be tested as my dad is hypo with pernicious anaemia…turns out I’m same. GP being generally unhelpful seems happy to just treat fatigue as independent symptom, hence referral to chronic fatigue specialist yet it was the main symptom that flagged all the tests in first place. All seems like it’s connected to and possibly related to nervous system.
Therefore, I did a private advanced thyroid test, done via Thriva as recommended on Thyroid Uk website which came back positive for antibodies. Would love to know my next steps with GP as ideally I’d like endocrinologist referral to test further. All I can say is I know my body and so far I haven’t been wrong when I’ve had further testing. I’m just struggling to make progress with my GP.
When it comes to autoimmune thyroid disease, such as Hashimoto's, most have raised Thyroid Peroxidase antibodies, some have Thyroglobulin antibodies. Some have only one of those. Some have both.
The biggest problem is that most NHS tests are TPOab only. Hence someone with TGab only is told they do not have autoimmune thyroid disease.
I don't think we have much understanding about why this happens.
I suggest you join the Pernicious Anaemia Society forum:
But, in the UK, the term Hashimoto's is often avoided and you just get referred to as having autoimmune thyroid disease (AITD).
There is also Ord's disease which is very similar to Hashimoto's but one of the definitions of Hashimoto's is that the person has a stage in which they have a goitre. Whereas in Ord's they do not. (Lots of people seem to play silly games and suggest that some people have a goitre that is so small it gets missed, or ignored.)
And these antibodies can occur in Graves disease, and other issues. Including physical damage to the thyroid. (E.g. a seat-belt rides up in a motor accident, or some surgery.
And levels of antibodies do change over time.
Lots of other antibodies might be involved, but these are the ones where the antigen, what they attach to, is a substance which would normally only occur within the thyroid hence uniquely identifies that thyroid tissue is involved.
Gosh! This is helpful but sounds difficult to differentiate.
No goitre means likely orbs or Graves?
I don’t have a goitre (that I can see, I assume you would notice this given thyroid is at front of throat) but have experienced an odd awareness on my swallowing in last year and half. Not sure how else to describe that sensation.
The Thriva tests came back the Dr said antibodies are present in 80% of patients suffering with Hashimoto's. I thought she was implying that’s what was causing the antibodies.
No - Graves can have a goitre as the thyroid can enlarge is it is called on to make more and more thyroid hormone. And hyperthyroidism is the result.
Antibody tests can be useful to check that someone has one or other autoimmune issue but have limited actual use.
Antibodies are part of the disease process but some of the simplistic ideas seem very wrong.
Some time ago I posted this incredibly complicated paper. Far too much for us to get to grips with. (Way beyond me!!!) But it does help to emphasise that the complexity is beyond the ability of most people to grasp. And suggests that some simple ideas are plain wrong - or misguided.
Unraveling the molecular architecture of autoimmune thyroid diseases at spatial resolution
Your TSH is not “normal”. Its too high for someone actually being treated for hypothyroidism. TSH should be around 1.
What are your thyroid meds? Often after diagnosis doctors keep patients on too low a dose for sometimes very prolonged periods. E.g. in your case if you started on 50mcgs and doubled to 100mcg, this may still be a dose too low for you.
As above helvella asks you to check out the Pernicious Anaemia forum. So many of us have this underlying our Thyroid situation and the symptoms are so similar it can be very confusing.
Was test done as recommended ….early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
How much do you weigh in kilo
Which brand and do you always get same brand
How frequently do you get B12 injection
Have you tested vitamin D, folate, ferritin recently
Do you notice feeling worse in month before next injection
If yes, request injection is every 2 months
Folate
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance
B complex best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Thanks for the recommendation. When I worked with my powerlifting coach he recommended supplementing with methyl-folate. So I will defo order some.
This is all very interesting as never has anyone flagged how important vitamins are in the function of thyroid…until I came here of course! I feel naïve having just taken my levothyroxine for so long as per Dr’s instructions.
I was told supplements for vit B in tablet form doesn’t work due to pernicious anaemia. Would this be the case for me?
I did struggle with fatigue in Dec but when Dr tested levels he felt they were acceptable at 696 ng/L given I was approaching the 3 month mark for my repeat jab.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
I should probably state that I take Metformin off label as prescribed for PCOS symptoms. 500mg twice a day. One with breakfast and one with dinner. I believe this medication is known to deplete B12/folates but again when tested Dr felt the ranges were acceptable or to increase folate in meals
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