Just received some result following a Rheumatology consultation, as follows:
TSH 0.28 (low) GP to monitor (no units of measurement given). Down from 1mui/L (O.3 -5), two years ago.
T4 14 (no reference range or units given). Same result two years ago.
Will be dodging off to GP (who I expect to know nothing) and will also be asking for full thyroid profile (but anticipated that I may have to get this done privately).
Can anyone give me a clue about what the low TSH may 'mean' (if anything) and any suggestions about things I should raise with GP and any other blood tests required other than full thyroid panel and antibody tetts?
Discharged from endocrinology two years ago. Anybody think I need to go back?
Thank you, you lovely lot 😉😀xx
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Foggyme
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Being simplistic a low TSH means an overactive thyroid (or too much medication for hypothyroidism) and a high TSH means overactive (or not enough medication for hypothyroidism). However this won't be true in your case, and just shows what nonsense it is that many doctors only look at the TSH result.
Your FT4 result of 14, even without the lab ranges, looks pretty normal to me, so you haven't got an overactive thyroid. The all-important FT3 result, which would actually tell you how well your thyroid is working hasn't been tested, which is normal for the NHS.
Are you taking Levothyroxine? Have you ever been diagnosed with a thyroid problem? If you take Thyroxine how long before the blood test did you take your last dose? (it should be 24 hours if possible).
If your TSH continues to drop and your FT4 stays normal or even low end normal, it could point to pituitary failure or central hypothyroidism, where your body needs more thyroid hormone but your pituitary has forgotten how to kick your thyroid into action to actually produce any. However I don't think a single TSH blood test just outside the range means anything much.
Did you know that your TSH result will vary depending on what time of day you have the test? TSH changes throughout the day, so most of us have our blood tests first thing in the morning, when the TSH is highest.
No, not previously diagnosed with a thyroid problem and not taking Levothyroxine.
Thyroid test was taken midday (at hospital appointment) so good point about having an early morning test. Will,keep that in mind for the future.
I do have an aotoummine disease (Undifferentiated Connective Tissue Disease - ? Lupus), am currently taking immunosuppressants and have been on steroids (Prednisilone) for the last three years.
Just been researching and it appears that steroids can affect thyroid function through suppression of TSH in the thyrotrope or hypothalamus...[though it’s thought that these]...medications do not cause clinically evident central hypothyroidism:
So...you may be spot on about the potential connection to central hypothyroidism, though whether this is clinically evident or not may be difficult to determine because the symtpoms of AI disease and thyroidism have many commonalities 😮😐😉.
Will keep your comments about pituitary failure or central hypothyroidism in mind since whilst it appears that being on steroids may be the likely cause for the low TSH, the two (or should I say three) are not mutually exclusive 🤔. I think - because I'm a thyroid dunce 🤣🤣.
Guess the thing to do is to get full thyroid panel (to include T3), and if T3 is okay, then get GP to periodically test TSH so as to keep an eye on potenital for further TSH suppression due to ongoing treatment with steroids. Does that make sense to you?
And yes...you have helped, so really appreciate your reply. Thank you 😊.
As Lupus and PA are auto-immune conditions - then I think it is important to have Thyroid anti-bodies tested to rule out Hashimotos. The NHS only test Anti-TPO - there is also Anti-Tg. Auto-immune conditions like to hunt in packs ! - I have Crohns and Hashimotos. 😊 With Hashi's you can swing between Hyper and Hypo.
T4 reference ranges can vary substantially from lab to lab, but I think a value of 14 is quite low in the range for most of them (typical range is around 12-20). This, coupled with a below range TSH suggests you have central hypothyroidism.
I worry your doctor will go with the low TSH value and try to give you carbimazole (for hyperthyroidism) - it's very important you find out what the reference ranges are for the T4 - if your T4 is in the lower half of the range, don't accept carbimazole, and ask to be referred to an endocrinologist.
Thanks for this Cooper27. Suspect you’re right about my GP - he's a bit of a general numpty and I now research everything before every appointment 🤷♀️🤦♀️. So I agree about being wary about his response.
Have another appointment with rheumatology next Tuesday so will ask about the reference range (suspect 9 - 25), so yes, T4 is towards the lower end of the reference range.
To complicate matters, I'm on steroids, which I now understand can suppress TSH levels, so no idea how this may (or may not) affect T4 levels (this thyroid stuff is sure complicated). Just left a reply to eeng about that and also linked to a paper about medications and the potential to thyroid suppression.
So...given that TSH may (or may not) be suppressed by steroids and that T4 appears to be in lower end of reference range (where it's been for the last two years)...do you still think it advisable to see an endocrinologist - given that endocrinologist is aware of T4 level (but not of recently low TSH level)?
I suppose I could be cheeky and email him to ask (saw him once on the NHS and then had to wait so long for another appointment that I booked to see him privately. He was very apologetic that it was the only way I could get to see him, so perhaps he may not mind 😉).
The steroids bit is quite important, yes. Is that a long term thing? If it's just a few weeks, I would ask to be retested after you've come off them. If long term, I'd suggest your GP write to an endocrinologist for guidance.
I think if T4 is 14 on a range of 9-25, that'd be ok (if we can explain the low TSH). Not ideal, but ok. On a range of 12-23 (my doctor's reference ranges), it's a definite sign of struggling thyroid. It all comes down to the range I suppose!
NHS test again yesterday...awaiting those results but as always with the NHS, not a full thyroid panel. Have also asked for reference ranges.
Will get done privately so that everything is included...good point about getting advice from an endocrinologist...will follow that through with GP...though knowing my GP, I'll end up having to see an private endocrinologist.
As you have other autoimmune diseases then it's essential to test for TPO and TG thyroid antibodies
Also essential to test vitamin D, folate and ferritin
Your FT4 looks LOW. Suggests hypothyroidism due to Hashimoto's. Rather than hyperthyroid due to Graves.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Ask GP to test vitamins and thyroid antibodies
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
it's important to get TPO and TG thyroid antibodies tested at least once .
NHS rarely tests TG antibodies if TPO antibodies are negative
Vitamin D, folate and ferritin tested and lacking - on GP prescribed supplements for those. Also on injections for vitamin B12 deficiency.
Had another appointment with rheumatologist and they're re-checking TSH, T4 and TPO (if the lab will 'let' them re-test so soon 🤷♀️🤦♀️). They suspect possible pituitary issues - so we'll see.
Very useful information about private tests for full thyroid panel - will go down that route 'cause certainly sure not going to get it on the NHS. (Begs the question how on earth can they treat thyroid issues properly when vital information is not available because they don't even do the tests - shocking). Testing isn't cheap is it, so will be watching out for special offers...thank you for that.
So if all your vitamins are low this suggests you are likely to have autoimmune thyroid disease (Hashimoto's) and/or poor gut function
What were actual results and ranges on these and what has been prescribed?
Have you had coeliac blood test?
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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Very astute...I do indeed have autoimmune gut dysmotility (due to Lupus) and a host of GI issues as a consequence. Plus steroids and immunosuppressants impact of the uptake of vitamin D etc.
Currently taking iCal-D3 (1000mg/880IU) daily and vitamin D levels in Feb were 86 (no reference ranges or units of measurement given). Folate is within the top third of the reference range and B12 levels are always over 2000 (on B12 injections, so as expected 😉).
Blood test and biopsy for Coeliacdisease both negative.
Good points about diet...guess I'll have to give that a try and see if it helps.
Will go back to endocrinologist, if necessary (though they don't always appear to be as well informed as they should be 🤷♀️)...and will most likely be posting again for more advice from you lovely forum folks.
Thanks twin for your help SlowDragon (what a wonderful user name 😀).
Pity majority of medics don't impart any of this information to all autoimmune patients
I only got better after fantastic help on here. Gluten intolerant, negative coeliac. Multiple vitamin deficiencies as result. Heterozygous DIO2 gene variation, ( very common gene variation) More on my profile
Thanks SlowDragon. Really useful information...and looks like it’s certinly worth making dietary changes.
Funny you should say about medics not imparting information...I specifically asked my previous (rather unpleasant) rheumatologist if making diet changes was a good idea. Both he and the nurse practitioner said that diet makes no difference whatsoever to autoimmunity!!! Hence, my ex-rheumatologist (he knew even less about systemic autoimmune conditions).
So...diet changes for me 🤞....gluten and diary first things to go...and may also help with steroid weight gain 😐😉😀.
And I know exactly what you mean about help from fora - if it wasn't for help from several fora here, I'd still be struggling to get a proper diagnosis and start on the route to better health.
Will take a peek at your profile for further ideas.
As you say this is made more complex because of the steroids. If the low TSH & the consequent lower end of range T4 is due to the steroids the only way you are going to know this for sure is to come of the steroids & see if this causes your TSH to rise alongside your ft4. Youd need to talk to your rheumataologist about this to discuss an alternative treatment plan.
I was once put on a slow relase beta blocker that blocked conversion of thyroid hormones.....made me very ill!!!!
So personally I would look at this first before considering other causes.
Thanks wavylines. Unfortunately, stopping steroids is not an option at the moment...but something I'd dearly love to achieve in the future 🤞.
Discussed the low TSH and T4 with rheumy earlier this week and she thinks not a consequence of steroids... more (albeit limited) NHS thyroid tests done and am going to supplement these with a full thyroid panel via private testing (how sad/bad that we have to do this!).
So hmm...will have to watch and see where this goes.
Hi, join the thyroid group they will be able to advise you
From what I understand, and my daughter has low TSH, when our body has low TSH it means our body isn't having to work hard to make thyroid. It can also mean that we have an overactive thyroid. However, as in my daughter's case, her TSH was low but when they checked her T3 & T4 they were both in the normal range. Therefore nothing is done and it will be a wait and see. Her doctor said if her heart started racing (she fortunately doesn't have anxiety so that won't confuse the symptoms), if she sweats a lot, sleep disturbances, irritability, etc., she was to go in for a re-check.
I have Hashimoto which causes LOW thyroid. Those of us with LOW thyroid our TSH is HIGH because our body's are having to work extra hard to make T3 & T4. I take Armour Thyroid and my TSH stays within the normal range.
Remember, we are all different. Our blood work ranges are averages. If you are close to the range sometimes the doctor will have you come back in a month or two or three and test again to see if you then come back within range.
A doctor friend of mine says since there is no "normal" since we are all different doctors are looking for extremes from prior tests as well as way out of normal.
An example is my mother's tri-glycerides were 800. Normal is under 150. Mine were 153-160. My friend says she doesn't medicate until they get into the 300's. So that's just one example of what doctors are looking for. Something that suddenly changes and gets way out of range.
Thanks BetZH. Will keep an eye out for extremes or sudden changes.
Symtpoms are more difficult - so much going on in the autoimmune department that it's quite difficult to know which symptoms are due to which condition.
Hope your daughter remains symtptom free 😉😉.
Thanks Foggyme. Those of us on this forum 100% understand when you say "it's quite difficult to know which symptoms are due to which condition". Anxiety, heart racing, when we are thinking and thinking and thinking (worry, ruminate) can really get in the way of knowing what's up.
I have been listening to meditations on calm.com ($59 for an annual subscription) daily for about 40 days. Though I still have anxiety and think ahead before planning and going out I must say I am having more and more success in the outside world. I've gone to dinners with friends and relatives and once in the restaurant for about 15-20 minutes the anxiety goes down and I find myself enjoying it like I did prior to anxiety.
Hi BatZH. Really impressed with how you’re handling the anxiety and delighted that you’re feeling more able to enter in to the outside world, and enjoy life once again.
Hurrah to and for you 👏👏👏⭐️⭐️⭐️.
Keep well and take care xx
Thanks! I am realizing that morning seems to be the worse for me. It seems to set the day. What got me to HealthUnlocked was searching for "morning tremors" and was happy to find I wasn't alone. Knowing it's something many of us with anxiety have experienced lets some of the steam out of the anxiety. Then this week I found articles about "cortisol awakening response". I always felt like my engines were starting in the morning and some chemical had to be causing it. We're not crazy!
Someone in this group mentioned that if they open their eyes or get up it goes away. I tried that as well as I'm saying to myself "this is just cortisol waking me up" and now I am not afraid when it happens.
Much thanks goes out to whomever invented this web site. It's so very helpful to know I am not alone and through our brainstorming we find tricks to help us live with it.
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