Can I get your opinions on my TSH and the usefulness of T3/T4 please

Hi, I am looking for opinions and experience please.

I have been experiencing extreme fatigue, brain fog and muscle/joint pain as main symptoms for probably 2 years. I got a 'diagnosis' of chronic fatigue syndrome about 8 months ago. I recently had a blood test which showed that I have iron deficiency anaemia and so I am on iron tablets. I am also on sertraline as I am getting a lot of anxiety...I think from trying to maintain work and life whilst feeling so utterly shite.

I also recently had my neck scanned as I have a couple of lymph glands which have been hard and prominent for months and night sweats and itching and leg cramps at night. The consultant said my Lymph glands are normal but my thyroid is enlarged and has nodules. He said this is not significant and is a normal sign of aging

I had my TSH tested, to check for HYPOthyroidism. It is 0.35 mIU/L (normal 0.27-4.2) so my GP not worried

It seems too much of a coincidence to me that I have an enlarged nodules thyroid gland, very low end of normal TSH and the symptoms I have. I asked GP to do T3 and T4 as I know someone who was HYPERthyroid with paradoxical fatigue. GP said it would be extremely unlikely to be hypo or hyper with normal TSH. Also said lab don't like to run T3 or T4 as they are not useful tests.

I used to be a veterinary nurse. Hyperthyroidism is common in cats and T3 and T4 are always run routinely along with TSH. They are very useful tests for cats! Are they really not useful in humans?

Thanks for reading, that was a bit of an essay. I'm really REALLY fed-up, and am considering paying for private tests

22 Replies

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  • It's debatable how useful they are, diagnosing certainly , but for treating they can be misleading in my opinion. I have found if you rigidly dose to the numbers you can chase your tail.

  • Thanks. Do you think my TSH is borderline? I don't know how low it goes with hyperthyroidism

  • Your tsh is perfect , but you could only know for sure with a full thyroid panel including the antibodies . It is possible to have a low TSH in the middle of a hashi's attack due to the dumping of thyroid hormones.

    To give you some idea , I once had a tsh result of 5 doctors said borderline , check in the months . 3 months later it was 3 , doctor said all great go away.

    6 years of suffering later , at the doctors with severe head neck and shoulder pain , amongst many other things , blood test tsh of 49. A private test showed antibodies through the roof .

    If I had an antibodies checked , the nhs does not do them , years earlier , it would have explained the lowering of my TSH from 5 to 3 was because of the dumping of thyroid due to the attack on the gland and I would not have suffered for years.

  • Also my left eye has been twitching/pulsing for 4 days. I read that can be thyroid related??

    And my mum has a thyroid cyst (hyperglottal?) which is being removed because it is causing problems

  • Eye twitching I had when I was severely hypo and high antibodies.

  • Tangawizi have you ever had your vitamin b12 checked? Eye twitching can be a symptom of low b12. Also many of the symptoms of b12 deficiency are similar to hypothyroidism

    Lu

  • Also sign of low B12 and/or magnesium.

  • It's not just hyper and pituitary resistance causing high levels, you can also have central hypothyroidism with normal tsh levels and very low thyroid hormone levels so T4 and T3 tests are definitely worth getting to see if a problem there especially if have enlarged gland. I think doc is being stupid not to have tested further considering this and unusually low tsh.

    I personally find them very useful and are normally recommended on this site. Great to see cats get better tests than humans lol!!!

    Also get Vit B12, Vit D, FOlate tested especially if already low in iron for no obvious reason as some of your symptoms can be caused by these. Post your results along with blood count if you have them as docs are generally pants at these too.

    have you ever looked in to why iron low? Have you stomach/absorption issues? I was also diagnosed with chronic fatigue but I now personally believe it to be a fake diagnosis they give when they can't figure out what the problem is plus it gives them the added benefit of then blaming all your problems on this so don't have to actually help you. I don't have this problem any more, nor the pains, nor much else :-)

  • Also if you think you're getting anxiety and not necessarily an anxious person or no obvious reason for it, you could also check your cortisol levels maybe?

  • Many GPs are actually unable to request T3 tests anway so if you want private tests, most on here use medichecks or blue horizon. The test normally recommended is the thyroid ultra vit or thyroid plus 11 which tests TSH, T4, T3, both thyroid antibodies, CRP and all vits already mentioned. Both £99 although medichecks often have them on offer for £79 on "Thyroid Thursdays" lol :-)

  • Thanks for your replies. I have had vit D tested as I have had vit D deficiency in the past, but not sure about B12.

    I'll look out those private blood screens. I looked yesterday, but could only see ones which cost £hundreds

    My normal GP is on holiday, and actually leaving soon. I got totally fobbed off by another doctor yesterday. I do understand I am not really 'sick' and they are busy, but I can't live like this. I am on my own with 2 kids, I work full time, mortgage to pay and 2 aging parents. I can't be this tired and fuggy. It doesn't work

  • i'm also a single mum and always felt awful until more recently so i can empathise.

    here's a link to the test, it's £99 but often £79 on a thursday. If you don't fancy getting that much blood out of yourself like me, you can pay an extra £25 to have done locally in hospital or similar although it's also worth checking with medichecks where you can get it done and phoning them first as I can pay hospital £15 directly rather the £25 to medichecks saving another tenner:

    medichecks.com/thyroid-func...

    Yes unfortunately docs are often chronically bad at chronic diseases or similar and just hand you a prescription for anti-depressants as obviously all these problems are just in your head ggrrrrr.

    You'll get there if you stop listening to them lol :-D

  • If you've had vitamin D deficiency in the past and it was treated by a doctor it is possible the dose of vitamin D you were prescribed was very small.

    When my vitamin D was less than optimal I started treating myself with 1000 iU per day. After 6 months I tested again and my levels had actually dropped.

    Doctors are even worse - many of them only prescribe 800 iU per day, which is not going to raise levels for anyone.

    Another problem is that doctors will often stop prescribing after a couple of months. They just let people become deficient again. Some people on this forum need 5000 iU - 10,000 iU for a few months to get their levels optimised. My own vitamin D3 levels were never catastrophically low, but to get them to rise at all I needed 3000 iU per day.

    I wouldn't be surprised if your levels were still deficient or very low.

  • Oh yes, I take 10,000 iu vit D daily, since I was found deficient!! Not getting that again 😁

  • I also don't really believe in CFS as a diagnosis saggy. And I found it really interesting that in the information sessionss I have been to at our hospital, the group's are 99% women.

  • yes, unfortunately we are more prone to these things as systems are more complicated and have extra stresses on our body and often seems to trigger at times like menopause and pregnancy maybe. Thyroid/diabetes are classic examples.

  • It seems animals get treated better for thyroid problems than humans do! Have you thought of getting the vet to do your thyroid test? Actually a lot of people on this forum get private blood tests and self medicate, having given up on the NHS. Many use Blue Horizon for their tests - they do specific thyroid packages.

  • Your GP has obviously not heard of central hypothyroidim where TSH and Thyroid hormones are low because the problem is with the pituitary or hypothalmus, not the thyroid itself. GPs pretend that it is rare as they don't bother testing anything except TSH so don't spot it. Ask for an endo referrral or get private tests done so you at least know.

    Also get B12, folate, ferritin and D3 tested as less than optimal levels can cause those symptoms.

  • Eye twitching is often caused by nutrient deficiencies. Low magnesium could be the cause. So could low potassium. Low iron is also often implicated. But supplementing blind is not a good idea. Supplementing magnesium in the right doses is usually not a problem if the kidneys are reasonably healthy, but supplementing potassium wrongly could affect your heart. And of course too much iron is poisonous and must be avoided.

    Diagnosing by just checking the TSH is done to save money, but it is really, really not accurate, and misses so many different ways that the thyroid can go wrong. And once someone has a diagnosis, continuing to use just the TSH is also useless in my opinion. Thyroid hormone levels can be all over the place depending on the cause of the dysfunction. For a lovely long list of things that can affect TSH and thyroid hormones, see this post from another forum - it isn't necessary to understand it!

    forums.phoenixrising.me/ind...

    The best way to go, if you can afford it, is to pay for testing, then post the results and reference ranges in a new post and ask for feedback.

    For general info on private testing :

    thyroiduk.org.uk/tuk/testin...

    If you register with Blue Horizon Medicals and Medichecks you'll be sent info on their special offers. Both companies have these fairly regularly.

    The best tests to start off with are the following - and prices are usually similar - around £99 :

    bluehorizonmedicals.co.uk/t...

    medichecks.com/thyroid-func...

    If you can get an iron panel done as well, that would be very helpful. Medichecks are cheaper for getting an iron panel done.

    medichecks.com/iron-tests/i...

    Both companies offer testing kits for finger-prick testing (microtainer kit), taking blood from a vein (vacutainer kit), getting blood taken at a hospital, or paying for a phlebotomy nurse. It depends on the test whether a finger-prick sample is acceptable. If you know someone who will take blood for you from a vein then order the vacutainer kit. Some NHS hospitals will take blood for private testing. Check first and ask the price - prices vary wildly. Few GP surgeries help, as far as I know.

    Also note that Blue Horizon have linked up with Spire Hospitals and Nuffield Hospitals for some tests, and in those cases I think blood taking is included in the price.

    The basic process for all testing is that you order the test, and if a kit is necessary then it is sent through the post. You get the blood drawn, then you package it up and send it back to the lab. Then results are sent to you through email (Blue Horizon) or by logging into your account online (Medichecks). If you were to order a test where blood taking is included you would have to go to the relevant hospital, they take the blood, and they keep it - no posting required.

    Good luck. :)

  • Thanks, that's really helpful

    I am happy to take a blood sample off myself. It says it must be done by a qualified person...what does that mean? How will they know who does it? Do they send you a needle and vacutainer?

  • If you order the vacutainer kit then they send the needles and test tubes necessary to take blood from a vein.

    Be aware though, that sometimes they send the wrong size of needle. I got sent one once that would have been suitable for an elephant.

    And they won't have a clue who gets the blood out of you, so don't worry about that.

  • I have booked private blood tests with medicheck.

    I'm now weirdly dreading everything coming back normal. Which, I realise is stupid

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