I started feeling extremely tired in November 2024 so went to the doctors as thyroid runs in my family. They tested my blood and my thyroid was borderline and advised to check again in 3 months time. Jump forward to February and I developed a lot more symptoms of an underactive thyroid. Weight gain, itchy, cold, dry mouth, irregular periods but after my blood test still borderline.
After many mental breakdowns due to feeling so rotten and now a spell of vertigo/dizziness and swimmy feeling I’ve been back to the doctors today to demand answers. He agrees I have all the symptoms of an under active thyroid but because it is still borderline they are unable to do anything at present. Although he has referred me to a thyroid clinic to discuss my symptoms and ask questions there.
Has anyone been through anything silimar? And has any advice how to cope with these symptoms day to day? Busy working Mam with a 1 year old boy who has just started having tantrums so help needed!!!
Thanks
Claire
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Sheeran2025
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I’m so sorry you’ve been having awful physical and mental hypothyroid symptoms.
So we can offer better advice, can you share blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
The antibody tests will show if your thyroid condition is auto immune (aka Hashimotos)
In the first instance, do ask your GP for the above tests. We don’t recommend supplementing key vitamins without testing first (and sharing results with us).
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
When is your next thyroid blood test? A patient to patient tip for your next test is to get an early blood draw (before 9am) and drink only water before the test (this ensures highest TSH)
Do you have the ranges for those results? Because the TSH looks over-range. And if you have two consecutive over-range TSH results, plus high antibodies, they are allowed to treat, according to the NICE guidelines. So, either your doctor doesn't know his guidelines and is just making excuses, or her just plain doesn't want to diagnose you!
One thing that will help you is to optimise as many of your basic nutrients as you can i.e. optimise iron/ferritin, vitamin B12, Folate, Vitamin D.
Being low or under range on any of the nutrients discussed on this forum will make you feel worse on top of any symptoms of underactive thyroid. And note that there is a lot of overlap between symptoms of low nutrients and symptoms of low thyroid hormones. You could possibly either eliminate or reduce the severity of such symptoms and make life much more bearable.
Another factor to consider is that low levels of nutrients make it harder for your pituitary to function. And your pituitary is what makes TSH which is what doctors use to diagnose thyroid diseases.
For people on the forum to give you more help you would need to post results of tests of your TSH and thyroid hormones as well as the reference ranges, and as well as the results of any nutrient tests.
You can buy supplements to improve your nutrient levels, and if you live in the UK they can be bought without prescription. But supplements need to be chosen carefully and at the right dose to do any good, so ask for advice on what to take to improve your nutrient levels.
Eventually you may need to wait for your TSH to rise. With luck it is possible that improving your nutrients might also improve your levels of TSH and make you feel better until your TSH gets higher.
I'm not a doctor but your symptoms, antibodies and tsh seem fairly consistent with you having hypothyroidism or for your pedantic doctor being close to having full blown hypothyroidism.
Given that you are unlikely to miraculously reverse your hypothyroidism by some unknown mechanisms then perhaps - "a trial" of 50 micrograms of levothyroxine, to see if it helps might be a suggestion that your GP could get their head around?
Have you a b12 result? B12 deficiency and hypothyroidism quite often creep up on us at the same time and their symptoms are pretty similar. And here's the kicker - b12 and hypothyroidism are equally well understood by most GPs.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
When retest iron levels test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
When taking any iron supplements stop these 3-5 days before testing
Eating iron rich foods like liver or liver pate once a week. Eat red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Generally the b12 ranges are along the following lines in the Uk:
<200 deficiency very likely
200-350 deficiency may be present - look for symptoms
>350 deficiency unlikely
Some authorities disagree with the above and maintain that anywhere south of 500 is either deficiency or you're close to deficiency.
So your result is at best possible deficiency and given you quite likely have another autoimmune condition in hypothyroidism then it would be reasonable to consider b12 deficiency - which is generally an autoimmune condition unless it is the result of diet or other medication such as PPIs or metformin.
You can check symptoms at B12d.org and the PA society website.
The dilemma you have is that if you take b12 supplements they are likely to raise your serum levels somewhat which may hamper getting a diagnosis and treatment from your GP if you are deficient. In addition symptom relieve can require super optimal serum levels which oral supplements do not always achieve. It might be worth discussing this with your GP if you think you have b12 deficiency symptoms and see if you can get them to consider the matter carefully.
If you think you have b12 deficiency symptoms there is a great deal of advice on the PA forum on Health unlocked.
GP should have tested for Pernicious Anaemia after November result
B12 is still very low …..
suggest you get a separate B12 supplement and start this
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
When you finish prescribed folic acid look at taking a daily vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
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 2 per day and/or 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 3-5 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) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Extremely common for Hashimoto’s to start after pregnancy
First steps
Improve very low vitamin levels
Get started on Levo
Dose will need increasing slowly up over 6-12 months
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
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