I wondered what it means to have high TSH but low T4. I've been taking slowly increasing doses of Levothyroxine for around 12 years, since diagnosis. My thyroid was definitely very low then; my husband dared not sleep, as I stopped breathing so often, and he had to keep waking me, amongst all the other tiresome symptoms. Levothyroxine fixed it then, but no doctor seems willing to discuss it now. It just feels as though something's going wrong. My last test result was:
Serum TSH:13.2 (0.34 - 5.6)
Thyroid Function Test Serum Free:T4 2.9 (7.7 - 15.1)
I'm very active as I'm a runner and cyclist so have always been thin, but my BMA is now 18, and I definitely look alarmingly skinny, though it's physically impossible for me to pack any more calories in. Any advice would be very welcome, as all I know is what I've Googled, and I suspect that's not ideal. Thanks very much for reading.
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Thanks, SlowDragon. That's all useful stuff to know. I do take multivitamins, and most of the vegetarian stuff I eat is fortified with B vits. Although I'd love to be vegan, I adore dairy and milk, and eggs feature pretty heavily, so I think my diet is reasonable. I've never had vit B or D levels tested, or anything much, actually. My Dr's surgery is horribly busy, so I try not to bother them much.
Majority of hypothyroid patients gain weight, but significant minority really struggle to maintain weight, especially if gluten intolerant or dairy intolerant
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 or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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
As SlowDragon mentioned check that you have written the results correctly. If you have it would be worth checking that the surgery have written them correctly.
Thank you so much for your answer. The results are from my NHS online test results, and they're correct. The only reason I'm querying them is because of my inability to put weight on, and a rising resting heart rate. My RHR has been rising steadily for the last month, which I've always assumed to mean too high a dose of Levo. But maybe it's the opposite?
'My RHR has been rising steadily for the last month, which I've always assumed to mean too high a dose of Levo. But maybe it's the opposite?'
There's no either or, so don't make assumptions. Do a blood test if you think something isn't right. For example, I've had severe palpitations when dose was too low, and the same when dose was too high.
Many members here do their own home finger prick thyroid tests to help keep track of their symptoms and medication doses. relying on the NHS is, as you've discovered, not good for your thyroid health! Testing companies we use are here, with discount codes thyroiduk.org/help-and-supp...
If they are correct you are severly hypothyroid and need a dose increase. Contact your doctor, tell them the results and get them to run another test with free T3 also (they will need to explain why they want TSH, fT3, fT4 all done). Once the blood has been taken they should give you an increase in your levothyroxine as a precaution.
Also, ask for your iron levels to be checked as low iron (ferritin) can cause rapid pulse and is common in hypothyroidism.
Are you having any gut issues such as pain, gas, growling, acid reflux, burping? I lost a lot of weight with hypothyroidism. I had palpitations and very high heart rate while under medicated. I went gluten, dairy and sugar free which helped, but not completely. I am now on a low FODMAP diet on top of the rest and my gut issues have stopped. My weight loss has slowed down, but I am not consuming enough calories from my diet. Hypos often have absorption issues. Do you take levothyroxine away from meals and coffee? I wait for 2 hours before I have coffee and food just to be safe.
Going by the numbers you've posted, there's no 'but' here. High TSH is to be expected when FT4 is low. That is how it works.
You don't mention how much levothyroxine you are taking, but it would appear to not be anywhere near enough.
'have always been thin, but my BMA is now 18, and I definitely look alarmingly skinny, though it's physically impossible for me to pack any more calories in.'
As you appear to be very under medicated for your hypothyroidism, this is not such a surprise. The majority of doctors think that hypothyroidism only causes weight gain, but this is not true. It's not uncommon for people to lose body mass when their thyroid hormone levels are way too low.
I've just read this in your bio 'I take 75mcg Levothyroxine and have done for 15 years now.'
Again, if the TSH and FT4 numbers you posted above are correct, then it seems that you may not be absorbing much of the levothyroxine.
Are you taking 75mcg every day, and taking it on an empty stomach, at least half an hour before eating, not with coffee and not at the same time as any other medication?
Thank you, yes, I take 75mcg 1st thing in the morning, with lots of water, and nothing else for at least an hour, not even vitamins. It's definitely looking as though I need to up the dose.
no doctor seems willing to discuss it now. ...... My last test result was:
Serum TSH:13.2 (0.34 - 5.6)
Thyroid Function Test Serum Free:T4 2.9 (7.7 - 15.1)
Did you get a print out of your results or accessed your results online rather than given them verbally or hand written by a member of staff at the surgery? You can only know if they're accurate by having a print out or seeing them online, mistakes can be made when staff write them out or pass them on verbally.
If those results are correct and your doctor is unwilling to discuss them then s/he needs shooting or should find another job.
To be fair, I've never actually met my doctor. The tests are done by a nurse, I see the results online, then they write and tell me the dose is being adjusted. I live in a pretty over-subscribed area, and the NHS is creaking here! I'd like to go private, but I'm not sure how that would work with a pre-existing condition.
The electrocardiogram revealed supraventricular tachycardia with 200 beats/minute (PSVT). The possible triggers of arrhythmia were investigated.
Results and discussion: In our patient, hypothyroidism was diagnosed (FT4=11.25 pmol/l (normal range: 12–22) and TSH=26.37 μUI/ml (normal range: 0.27–4.2)) as a result of chronic Hashimoto Thyroiditis (anti TPO>1/640).
We present a patient who presented with presyncope and supraventricular tachycardia with severe hypothyroidism. Patient responded well to thyroxine replacement with biochemical improvement, the disappearance of arrhythmia after restoration of euthyroidism suggests that hypothyroidism might be the cause of supraventricular tachycardia.
I've made an appointment and requested a re-test, also to include T3 and iron if possible. I take off-the-shelf multivitamins which have iron in them, but I won't take them for a few days before the test. As I've said elsewhere, (and as everyone else has pointed out), the figures just look wrong. I think I'd be unable to run at all if my T4 was as low as it appears to be. I do take much longer to recover from long runs these days, but I thought that was just my advancing age! I need to check the lab results and get my doctor's attention before changing anything, I think.
I'm not in Exeter, I'm in Milton Keynes, and I've no idea what their efficiency is here. But I'm thinking they might have issues too.
Hello! Lots of good advice has already been given here, I hope you find it helpful, this forum is so wonderful. I just wanted to say how much I empathise with feeling like you can’t bother your NHS doctors. They are over-subscribed and under-resourced and it is a tragedy how many thyroid patients are under treated or completely missed by their outdated testing methods.If you were considering going private, I see a private thyroid specialist who is an absolute breath of fresh air when it comes to thyroid treatment. They prescribe different thyroid medication depending on the individual (not just levothyroxine) and dose based on TSH, FT3, FT4 and most importantly, your symptoms! They also take into account all those important vitamins that can become depleted in thyroid disease, and check for autoimmunity to make sure they provide you with the correct lifestyle changes that can be made to support your recovery. I don’t have insurance and I pay as I go. It’s more affordable than you think, and with the NHS allowing you to continue under treated and unwell for so long, sounds like it’s worth looking into. Please private message me if you would like their contact details, their support has been truly life changing for me. Without them and left to NHS treatment I would be housebound and very unwell…but with the correct dose of NDT I have been flourishing and getting stronger month by month.I really wish you all the best whatever you decide. If you choose to stick with NHS treatment then I would seriously encourage you to demand more of your healthcare. Don’t be afraid to request the treatment you deserve, which is a proper appointment with a doctor, the chance to talk about your symptoms and experience, and to get the correct dose of medication that your results show that you need! In conjunction with that, use this forum to educate yourself and learn everything you need to with regards to managing hypothyroidism. The members here will always be willing to support you if you have questions.
Welcome to the forum 😊 There are many friendly and knowledgeable members here with much personal experience. So they will make suggestions for you and try to help.
When you say that no doctor seems willing to discuss your situation now; what ways have you tried?
It is difficult with the ongoing Covid situation and surgery's have had to adapt. Most do both phone and online or e-consults. It would be an idea to contact reception via phone and see how to get an appointment either by phone, face to face or e-consult.
Your health is as important as the next patient's in your surgery.
I'm fairly new to all things thyroid though have had symptoms for many years with a below range FT4. This forum has helped me get to this point and I'm now prescribed levothyroxine.
I'm prioritising my health this year and making gradual changes with the support and knowledge of this forum. I have a long way to go but certainly feel much better than I did six months ago.
How do you feel with such a low FT4? With being on the same unchanging dose of levo for many years, do you have hypothyroid symptoms?
This is not so much about the NHS " creaking" as about the inability of incompetent medics to correctly analyse your lab results!
You are clearly undermedicated ( if those labs are correct)
Try and see another GP in the practice or speak to the Practice Manager and explain that you feel unwell and cannot cope, feeling as you do.
They won't listen if you don't give them something to listen to!!
Meantime ease up on the exercise, your cellular T3 must be low and as such unlikely to sustain your regime....or your general health!
Your high TSH is most likely a sign that your pituitary gland senses low thyroid hormones in the serum and is trying to encourage your thyroid to produce more... by signalling high TSH to stimulate production
It does this to enable you to keep functioning...it will keep ramping up T3 production for as long as it can. This is refered to as " feedforward"
In time, if production drops to around 10% the thyroid will fail
Increasing levo dose would halt this.
If you measured FT3 you will likely find it is high compared to your miserably low FT4
Suggest you have a basic test to include TSH, FT4 and FT3 to prove this point.....and the point that you need MORE levo
Cheapest test from Monitor my Health for £32 ...10% discount with code THYROIDUK1O
Thanks very much for that; you've all given me so much to think about so I'll get in touch with my surgery and demand further investigation. What a great resource this group is. 👍
For ANY patient (whether already on thyroxine or not) any GP (or Nurse) seeing them SHOULD have contacted the patient.
if you get to see the original blood results yourself , there WILL be a comment from the lab to this effect.. either a "!" ,or some other comment to the effect of "if patient is on thyroxine results suggest dose is insufficient , if patient is not on thyroxine results suggest primary hypothyroidism"
When you do contact the GP, you should ask why you have not been contacted about these extremely hypothyroid results with a view to them increasing your dose /or making sure you are taking your levo correctly/ regularly...... With results that are this abnormal it should NOT have been left be up to you to contact them.
Keeping the TSH 'in -range' is the most BASIC requirement for NHS GP's who are prescribing Levothyroxine and monitoring the dose in the treatment of hypothyroidism. See NHS guidelines for treating hypothyroidism : nice.org.uk/guidance/ng145/...
1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
1.4.2Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.
Adults
1.4.3For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.
1.4.4Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine.
There was a note on the results saying they were 'borderline' and that the test should be repeated, but I didn't see that until I thought to check my NHS account. Then I contacted the health centre to ask for a retest. The receptionist checked, then said the Dr wanted to wait three months before repeating it. Their communication really is dreadful, come to think of it. Maybe I should try to change my health centre.
'the Dr wanted to wait three months before repeating it'
That is absolutely NOT appropriate for someone already diagnosed and on thyroid medication for as long as you have been. Waiting three months and then re-testing may be appropriate for genuine borderline results for someone undiagnosed. But those results are very defintely not borderline for anyone.
if your Ft4 is really only 2.9 it is TOTALLY UNACCEPTABLE to wait 3 months to retest
Bloods should be retested immediately. Also insist they test vitamin D, folate, B12, full iron panel for anaemia including ferritin …..and coeliac blood test
What????? Words fail me!! There isn't any doubt that you need an increase..... I would demand an appointment & not with the idiot who said you needed to be retested in 3 months. Sounds to me as if whoever read you case file isn't aware that you have been diagnosed with hypothyroidism, 15yrs ago & you simply need an increase of levothyroxine!! If no joy complain to the practise manager. This is not about them struggling to cope it's sheeer incompetence.
I think it's time to gen up on Hypothyroidism.... Knowledge is power. A good book is Living with Your Thyroid by Barry Durrant Peatfield.
I once had a GP who decided that my 3 heart meds were all the same & was about to stop 2 of them. I had to explain to her how they are different and what each does. It was basic pharmacology. She did have the grace to apologise but it's a good job I knew as clearly she didn't!! So my advice is gen up & double check all that you are told.
Those test results are not borderline even by NHS guidelines. Both THS and T4 are out of range. If your figures are not within the bracketed numbers then you are NOT borderline. You're within rights to complain here. But to move forward I'd suggest writing a physical letter addressed to the Medical Team or GP by name (use lead GP of surgery if you don't have a designated doctor). Quote the test results and point out they are not in range. The lab has therefore labelled the outcome incorrectly. Say you are extremely concerned, experiencing symptoms and need an appointment. Perhaps better not say what symptoms till you speak to the doctor. Apparently many GPs are so badly informed they will think 'weight loss - can't be hypo'. I too lost weight and was getting concerned about it when my TSH was high (11.9). So we don't always follow the same pattern. People's symptoms can be atypical.
Hope this helps.
BTW something had clearly changed in your system- virus recently? Close to menopause? It's worth thinking about that especially peri or menopause shifts as they too are endocrine
'Borderline' is a totally inaccurate description of these results .
Whoever wrote that really does need to be officially pulled up on it .. it's so 'wrong' they are a danger to patient.
The TSH is well over 10 ( which is the point at which treatment is recommended to bstarted even if there are NO symptoms )
AND the fT4 is well under range. which moves them from the 'subclinical' category to the 'overt hypothyroid' category.
And since you are already diagnosed and on treatment , then 'borderline' would be close to or very slightly over the top of the TSH ref range ie. 5 or 6 ... not 13.2
So they are not even bordeline for an undiagnosed patient with no symptoms , and they are certainly not borderline for someone on treatment who's TSH and fT4 are supposed to be kept within range by adjusting the dose.
Below are the guidelines for STARTING people on levo when their fT4 is still within range (subclinical hypo) and they have no symptoms : as you can see 'over 10' means it's bad enough to give them levo even without symptoms sand even if fT4 is in range ..and your ft4 is NOT in range ... Honestly i'm speachless at the incompetence of your doctors.
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. "
I suspect if there was a note on your file saying borderline, that someone read the numbers the wrong way round (TSH of 2.9 and T4 of 13.2 could be interpreted as borderline). But your actual result if correct is definitely not borderline. This merits a second test.
Just to add if you’re an endurance athlete and veggie with thyroid disease you are quite likely to have low Ferritin - unfortunately this is common in runners and cyclists and can creep up on you and seriously affect your performance and recovery (I’ve been there). Definitely get an iron panel plus Ferritin. Good luck
Well yes, if the numbers are correct. But there’s something odd going on if they have been labelled as borderline and I think that needs unravelled. It may have been human error by the GP or lab.
The more I read here, the more I think you're all right, and something's been recorded or reported wrongly. It sounds as though I'd have more issues if these figures were correct, but I'll get another test and find out for sure.
just checking Theauthoress..... re. possible causes for incorrect results .. did you see this in slowdragons reply further up the thread :
" Make an urgent appointment with GP and request thyroid levels are retested as first step .... Exactly what vitamin supplements are you currently taking ,Important to stop any supplements that contain biotin 5-7 days before test as biotin can falsely affect test results
Just a thought ……your not living near Exeter are you ……the Exeter lab at Exeter hospital has been giving lots of false results in last few weeks "
Regarding your weight problem, your body might be in catabolic state because of a prolonged cortisol produced by your body to counterbalance with your body inflammation. Most of ppl will put on more weight because of this catabolic state. But since you are active runner, this might lead to muscle wasting. Are you facing with any muscle-related problems such as reduced strength, muscle mass loss? As a long-term runner, you probably build your T1 muscle fibre more than T2 fibre. And your T2, the ones that bring you strength and hypertrophy, are also shifted into T1. Cortisol will break down even more T2 to turn them into glucose (actually also your T1, but T2 is more preferable). As a result, you lose your muscle mass and strength.
Interesting. I'm not an endurance person but experienced unexpected weight loss during the pandemic and actually lost more weight when my thyroid levels got worse. Often wondered why. Definitely lost muscle mass. 😫
Not only trainers, but most of hypo or chronic stress suffering ppl will experience muscle wasting, or even myopathy and muscle atrophy. Men and trainers tend to see it more clearly because of their greater muscle mass and strength. Some ppl will turn their lost muscle into fat, some others become skinny fat. Hypo ppl should do exercise frequently to increase their metabolism rate and feel more energetic, but they can suffer more muscle loss, higher cortisol level and become even more fatigue if they don't acknowledge about their catabolic state, especially when doing resistance training.
Thank you I've never been a gym bunny so no issues there. I walk pretty much every day and do a bit of interval walking - using different speeds and even running for up to a minute. I'm an AFib recovered too so my cardiovascular fitness is important. Nothing OTT - just an enjoyable stretch.
do you know what your t3 levels are like? My daughter had high tsh and low t4 and they were going to treat her for hypo but we got a private blood test to test everything including her vitamins and we found her t3 was super high so she wasn’t actually hypo at all the endo said 🤷🏼♀️
Please make sure you get your vitamin b12 & vitamin d checked. And do some research on the b12 yourself, as doctors know very little and a deficiency can cause serious problems head to toe.
B12 deficiency can also cause something called 'air hunger' so good to cross if off as an issue.
Have you had any feelings of anything in your neck? I ask because multinodular goitre can form during hypothyroidism. And if a nodule has poor placement and/or increased size it can make one gasp for air in the sleeping position. A sleep study to check for sleep apnea would be good to do as well.
Try this to check for a nodule blocking -
Raise your arms over your head. Lower your chin towards your chest. And talk. Is your voice different? Can you talk and breathe with your chin down to your chest?
All the best to you & hope you get some answers and some help soon.
Thanks, I'll definitely get everything checked, and have already made an appt with my GP. I don't have any signs of goitre or swelling, but I was close to coma when first diagnosed, and breathing was no longer automatic, which was slightly horrifying, specially at night. But it did force me to visit the Dr, which is something I've always tried to avoid. Seeing British doctors always feels to me like visiting the headmaster. I don't like being spoken down to; it makes me forget what I came to say, and then I leave them, all peevish and cross with myself. But I've made notes this time, and I'll check them carefully before I leave the surgery.
Just wanted to say, that I sense that you don't want to bother them as they've got so much to do.
Untreated/mistreated hypothyroidism can lead to a host of problems - if it wasn't an issue, then hypothyroidism wouldn't make you eligible for a medical exemption certificate.
You are one of the people that they should be seeing.
NB: I get a sense that quite often the emails / correspondence are more and more being pre screened by non medical staff (they are at my practice), you really need to see a doctor when your levels are that high - I know you've got a doctors appointment in the diary now.
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