Hello! I’ve had a kind of high tsh since I was 19. I’ve tested it along with T4, the 2 antibodies, not sure if also T3, and they all were fine except my Tsh (4.5). I did it because I fainted upon waking up with low blood sugar and low blood pressure after a stressful period (I got anxiety, depression and trauma). I figured it is normal and did not go further.
Then at 24, my overall health got bad after a very stressful period. My gut was suffering the most. I read about the link between Ibs and hypothyroidism. I fainted again under stress. This is when I finally went to an endocrinologist because I was having most symptoms, but they dismissed me because I was skinny. Despite always having had a chubby/puffy face even underweight and constipation since i was a baby. Always tired.
Then at 26 or 27, Tsh was 4.9. Then I had covid in 2022 and i think it influenced my labs as my Tsh was 2.2 twice in a month when i finally went to another endo after I fainted again following cramps and runny poo (i am always constipated, this was odd). Now I was chubby. Ofc, he dismissed me and said even my 4.9 result was normal and that i just need to lose weight, my thirst and dry skin is psychological, my gut issues (which are also a puzzle to gastroenterologists) are separate. He just felt my neck, said no need for an ultrasound. Lol. Yes, I never had an ultrasound.
I figured I should wait till my hormones go back to their usual selves. My Tsh came as 5.6 last week. The other labs were fine. I am utterly confused. Can I have non-autoimmune hypothyroidism? Are there other causes? Thank you! I will be seeing a new, recommended endo soon.
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2 subsequent over-range TSH (3 months apart) is usually criteria to begin T4 replacement (levo).
The TSH can also be unreliable, it a pituitary hormone which signals thyroid. It rises when thyroid hormones are low to try to get thyroid to work harder & make more hormone. It follows / responds to what the levels are doing so it is delayed & can be “wrong” for example nutrients are low it can appear lower than it should be.
So rather than going by TSH you need to be looking at FT4 & FT3 - most symptoms are caused by FT3 which is the active hormone. FT3 isn’t often tested.
Most hypothyroidism is due to autoimmune, antibodies are not always present.
If doctor can’t or won’t test there is option to arrange a private test.
Private testing:
Order a kit online and sample can be taken by fingerprick test, (extra fee for clinic visit / home visit venous draw) sample posted back & results available online often very quickly.
Sample recommended to be taken at 09.00, fast overnight, avoid biotin 3 days before test.
See link for private companies with discounts with many packages & options.
Medichecks thyroid advanced is as good option. Includes TSH, FT4 & FT3, CRP (inflammation marker) TPO & TG antibodies. Important to test nutrients - includes folate, ferritin, B12 & vitamin D.
You often make quicker progress when you have a complete picture at once.
Thank you! I will alwo test my T3 and hopefully my new endo will give me levo. The only time I tested my vit D, it was barely 34 even after 3 months of 4000 ui supplements. So I kept taking 2000-4000 daily.
Can I have non-autoimmune hypothyroidism? Are there other causes?
Yes. There are more underactive thyroid diseases than generally get discussed.
Primary Hypothyroidism. The most common. This has a couple of causes that I know of - autoimmune thyroid disease i.e. Hashimoto's Thyroiditis and/or Ord's Thyroiditis, and iodine deficiency.
Hashi's is hypothyroidism with a goitre i.e. the thyroid swells.
Iodine deficiency also causes hypothyroidism and this type is most common in Africa and Asia, as far as I know. The UK has also been declared to be iodine deficient by some sources, but I don't know if it is bad enough to cause hypothyroidism. Iodine is an essential ingredient of thyroid hormones, and if food is grown in areas of the planet with little or no iodine then hypothyroidism will result.
Autoimmune forms of Primary Hypothyroidism are most commonly found in Europe and North America. Any continent I haven't mentioned means I don't know what kind of hypothyroidism is most common there.
Secondary Hypothyroidism. This is a form of hypothyroidism in which the thyroid may be healthy, but the pituitary doesn't create enough TSH (Thyroid Stimulating Hormone), so the thyroid doesn't get sufficient stimulation to make it produce sufficient thyroid hormones. In this particular case, I think that long-term under-stimulation of the thyroid may make the thyroid shrink, just like Ord's but without the autoimmune factor.
Tertiary Hypothyroidism. This is a form of hypothyroidism in which the thyroid and pituitary are healthy but the hypothalamus doesn't produce enough TRH (Thyrotropin Releasing Hormone) to stimulate the pituitary to release TSH. (Thyrotropin is another name for TSH. )
So in healthy people the hypothalamus produces the hormone required to prompt the pituitary to produce TSH, and the pituitary produces the hormone required to prompt the thyroid to produce the hormones T4 and T3.
The active thyroid hormone required by every cell in the body is T3. Low levels will cause the symptoms of hypothyroidism, and high levels will cause the symptoms of hyperthyroidism.
Primary hypothyroidism is by far the most common form of underactive thyroid disease in the UK, Secondary hypothyroidism is next most common, and Tertiary hypothyroidism is rare.
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Having a TSH over 4.5 for over ten years must have been hell. And some or all of your nutrient levels will probably have tanked.
When I looked back at my TSH results for over a decade I noticed my TSH was never under 4.5. I was oblivious to this as my GP always said that was normal. Range is 0.35-5.50). So it was within range but really it should be around 1.00. I use to feel faint but never actually passed out. Some of those feeling faint episodes I’d end up being taken to hospital by work it’d be pretty bad. It just kept getting worse. Eventually after having a very bad health situation in 2018 I found this forum. Since then I’ve learnt so much. I decided to try private only as recommended by a fab administrator on here. I learnt that my TSH should never be above 2.5 or you’ll get symptoms. I learnt I’m a very poor converter of t4 to the magical T3 hormone. I learnt not to go by what my GP said as they don’t know enough. My private only endocrinologist trialed me with T3 med and T4 levo combined. Hey presto it was a miracle. I’ve never had a faint episode or any other of my debilitating symptoms ever again.
My faint episodes were lack of T3 which is lack of energy . I use to think I needed food but I needed T3 . You can get confused thinking sugar is low or food is needed as you’ll probably never know about T3 generally
So, check your T3 and see if you’re converting well enough. Your TSH should be around 1.00 when medicated correctly. That’s where a healthy persons TSH normally is 1-2. We aim to mirror a healthy thyroid.
Thank you very much for sharing your experience and kind words! I am sorry you’be been through this miserable thing, too!
Oh, wow, yes, I do eat out of fear when I get weak and slowly it turned into involuntary overeating, beside stress eating, which lead to 3 episodes of gaining over 15 kgs in 10 years (which i only lost twice by very restrictive diets). Low energy.
It’s enlightening that a normal thyroid has a tsh around 1! Idk why so many doctors gaslight us that higher values are fine.
I also discovered this forum in 2018, hence why I went to an endo then, but I guess I had bad luck and I lost part of my confidence after she dismissed me too as “just subclinical”.
I will also test my T3, thank you, and ask my new endo about giving me both. I am glad it has been working well for you!
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Very suppressed tsh, on T3 10, years 
Suffering with thyroid issue for over 10 years.
TSH LEVEL IN 10 YEAR OLD, NO OTHER HORMONES TESTED! HELP!
Strange TSH results after being on levo for over 20 years.
Tsh over 30, antibodies 365, feel fine. Could there be something else going on?
