Sub clinical hypothyroidism
Discussion
Had a couple of thyroid tests in the last year that showed TSH well over 5 (6.1 on the last one) and T4 at around the 10 nmol level.
My NHS doctor did some more tests at another lab on my insistance and this revealed T4 just a smidgen inside their range (still at 10 nmol/L) with TSH still over 6. The NHS doctor insists that I am in range and healthy and need no treatment at this stage and to get retested in 6 months. I explained that I do exhibit some of the symptoms of Hypothyroidism particularly the brain fog which makes some days at work a real struggle.
What should I do now, get another opinion? or just leave it for another 6 months? The more I read about this the more it seems this could impact on all sorts of other things in the body and that most other western countries would definitely treat at these levels.
Anyone any experience of dealing with the NHS over this sort of stuff?
My NHS doctor did some more tests at another lab on my insistance and this revealed T4 just a smidgen inside their range (still at 10 nmol/L) with TSH still over 6. The NHS doctor insists that I am in range and healthy and need no treatment at this stage and to get retested in 6 months. I explained that I do exhibit some of the symptoms of Hypothyroidism particularly the brain fog which makes some days at work a real struggle.
What should I do now, get another opinion? or just leave it for another 6 months? The more I read about this the more it seems this could impact on all sorts of other things in the body and that most other western countries would definitely treat at these levels.
Anyone any experience of dealing with the NHS over this sort of stuff?
Keep pushing! you are clearly feeling rubbish so it doesn't matter that they say you're 'in range', that could quite feasibly have been a blip they managed to catch especially as you are still showing symptoms. Is there another doctor in the practice you can see to talk things through with?
I've just been through this, progressively feeling more and more lethargic, anxious and major brain fog amongst other things over the last 12-18 months which I had been putting down to work stress (probably was part of the problem but certainly not all), it was only because my mother made the connection between symptoms and suggested it might be worth investigation that I got the blood test done which showed similar levels to you of TSH and T4. We have a family history of thyroid issues (some hypo, some hyper) so made sure to mention that to the doctor when I went in to discuss, repeated blood at 3 months and doctor included thyroid antibodies which came back pretty high so I was then confirmed as autoimmune hypothyroidism (significant levels of hypothyroid sufferers are this type) & started on levothyroxine. I've just had my bloods tested after 2 months on that & this time the doctor included T3 levels also, i'll be honest i'm not really feeling like i've improved much if at all at the moment, my TSH has dropped significantly, my T4 has gone up by a whole 1pmol/L & my T3 levels have come back off the bottom end of the scale.
I've been doing some reading to make sense of it all as I have a biology background & found the Thyroid UK & Invisible Hypothyroidism websites very useful. On that back of that I'd like to explore the low T3 further but at the moment the doctor isn't willing to do anything & NHS wouldn't prescribe T3 medication anyway so going to leave things until things don't feel right or my blood test next July (whichever is sooner)
eta: doctor was quite skeptical when I had the first review and wanted to put it all down to work related stress until the antibody test came back, I reinforced the family history of thyroid and autoimmune stuff & symptoms hadn't gone after work stress had been removed so did require laying out all the relevant facts & associations a bit. Thyroid problems are generally more common in women so do ask female relatives
I've just been through this, progressively feeling more and more lethargic, anxious and major brain fog amongst other things over the last 12-18 months which I had been putting down to work stress (probably was part of the problem but certainly not all), it was only because my mother made the connection between symptoms and suggested it might be worth investigation that I got the blood test done which showed similar levels to you of TSH and T4. We have a family history of thyroid issues (some hypo, some hyper) so made sure to mention that to the doctor when I went in to discuss, repeated blood at 3 months and doctor included thyroid antibodies which came back pretty high so I was then confirmed as autoimmune hypothyroidism (significant levels of hypothyroid sufferers are this type) & started on levothyroxine. I've just had my bloods tested after 2 months on that & this time the doctor included T3 levels also, i'll be honest i'm not really feeling like i've improved much if at all at the moment, my TSH has dropped significantly, my T4 has gone up by a whole 1pmol/L & my T3 levels have come back off the bottom end of the scale.
I've been doing some reading to make sense of it all as I have a biology background & found the Thyroid UK & Invisible Hypothyroidism websites very useful. On that back of that I'd like to explore the low T3 further but at the moment the doctor isn't willing to do anything & NHS wouldn't prescribe T3 medication anyway so going to leave things until things don't feel right or my blood test next July (whichever is sooner)
eta: doctor was quite skeptical when I had the first review and wanted to put it all down to work related stress until the antibody test came back, I reinforced the family history of thyroid and autoimmune stuff & symptoms hadn't gone after work stress had been removed so did require laying out all the relevant facts & associations a bit. Thyroid problems are generally more common in women so do ask female relatives
Edited by trixical on Thursday 2nd August 20:39
As Trixical says, you must keep pushing, if you don't have any luck see another doctor.
I was diagnosed as hypo a year ago with TSH99.6 T4 < 3 a year later and my medication is just about right, a couple of months ago my levels were within range but my doctor was more interested in how i was feeling and we adjusted the medication till i was feeling 100% again.
From plenty of reading it appears to be quite common to be within range but still having symptoms, this is why you need a doctor who's willing to listen to how you feel and not just what your results are.
Also T3 and T4 levels are worth requesting tests for as they generally won't test for these. from how i understand it, your body converts T4 > T3, and if it's not doing this correctly you can have all the symptoms with good TSH results.
Levothyroxine only contains T4 but there are alternative medicines that include both T4 and T3
Just to add, I'm no doctor and have read the above out on the ThyroidUK website
I was diagnosed as hypo a year ago with TSH99.6 T4 < 3 a year later and my medication is just about right, a couple of months ago my levels were within range but my doctor was more interested in how i was feeling and we adjusted the medication till i was feeling 100% again.
From plenty of reading it appears to be quite common to be within range but still having symptoms, this is why you need a doctor who's willing to listen to how you feel and not just what your results are.
Also T3 and T4 levels are worth requesting tests for as they generally won't test for these. from how i understand it, your body converts T4 > T3, and if it's not doing this correctly you can have all the symptoms with good TSH results.
Levothyroxine only contains T4 but there are alternative medicines that include both T4 and T3
Just to add, I'm no doctor and have read the above out on the ThyroidUK website
Edited by MrGman on Thursday 2nd August 21:51
I got a second opinion from a private doctor this week and he confirmed that I would definitely benefit from treatment and will arrange for the office to send me a quotation for a prescription of armour thyroid.
This stuff is expensive so I am unlikely to be able to afford the cost of it, especially as I would need it for the rest of my life. I was really just after a second opinion away from my local practice.
I guess I will just have to suffer and wait for a retest in 6 months to see if things change. I have heard that supplementing with Iodine and Selenium can improve things a little so I might try that in the mean time.
This stuff is expensive so I am unlikely to be able to afford the cost of it, especially as I would need it for the rest of my life. I was really just after a second opinion away from my local practice.
I guess I will just have to suffer and wait for a retest in 6 months to see if things change. I have heard that supplementing with Iodine and Selenium can improve things a little so I might try that in the mean time.
MrGman thats good to hear that your Dr is actively concerned about how you feel, I feel its now very much secondary with mine now i've raised the concern over my T3 levels and possible lack of conversion.
I'm glad you got a 2nd opinion 272bhp, its interesting they have suggested Armour straight off the bat as that is a Natural Desicated Thyroid brand which provides T4 and T3 together rather than just the T4 that Levothyroixine provides which I take through the NHS, did they advise why they recommended Armour? (I'd be interested to know what they are quoting for it also) I wonder if its a 'lets go for the Rolls Royce version straight away because this is private medicine' kind of thing or your results show a clear genuine need for the T3 already? Did the private Dr do any further tests to check your T3 & other levels?
eta: please go back to your main GP surgery and hound them, you can say you have been and seen the private Dr who does feel treatment is warranted given the results but the primary thing is that this is affecting you in your daily activities! Hopefully you can convince them into trying you on Levo to see if you feel some improvement. (If they do prescribe many NHS trusts will allow you to then have a medical exemption card due to the life long nature of hypothyroid, if this is the case with yours you need to get the right form when paying for your first prescription so that you can subsequently claim it back, I didn't know what I needed & the pharmacy didn't offer it up or enquire despite them knowing the relevance so thought it worth mentioning)
I'm glad you got a 2nd opinion 272bhp, its interesting they have suggested Armour straight off the bat as that is a Natural Desicated Thyroid brand which provides T4 and T3 together rather than just the T4 that Levothyroixine provides which I take through the NHS, did they advise why they recommended Armour? (I'd be interested to know what they are quoting for it also) I wonder if its a 'lets go for the Rolls Royce version straight away because this is private medicine' kind of thing or your results show a clear genuine need for the T3 already? Did the private Dr do any further tests to check your T3 & other levels?
eta: please go back to your main GP surgery and hound them, you can say you have been and seen the private Dr who does feel treatment is warranted given the results but the primary thing is that this is affecting you in your daily activities! Hopefully you can convince them into trying you on Levo to see if you feel some improvement. (If they do prescribe many NHS trusts will allow you to then have a medical exemption card due to the life long nature of hypothyroid, if this is the case with yours you need to get the right form when paying for your first prescription so that you can subsequently claim it back, I didn't know what I needed & the pharmacy didn't offer it up or enquire despite them knowing the relevance so thought it worth mentioning)
Edited by trixical on Friday 3rd August 11:33
I am no longer covered for medical insurance so paid for an initial private consultation with a specialist.
I just gathered up print outs of all my previous tests and asked him to have a look. He did suggest a further test would be worth doing to check for thyroid antibodies as well but at £200 I declined that for now.
He said that the numbers I had presented were certainly enough evidence to start treatment and I am guessing they get more profit from trying to sell me the really good stuff which I understand is not normally available within the NHS. Armour Thyroid contains both T4 and T3 but my T3 has been tested 3 times in the last year and is always pretty much bang on mid-range.
I have had a look at web pharmacy prices for Armour Thyroid and the cheapest is £100 for 100 30mg tablets. I am willing to bet this private practice will at least double that so it is just not going to be affordable for me long term. I will see what the quote comes in at.
I suppose it might be worth trying it for a couple of months to see if it makes a difference and this would add to the evidence for when I next have a test and consulation in 6 months with my NHS doctor.
I just gathered up print outs of all my previous tests and asked him to have a look. He did suggest a further test would be worth doing to check for thyroid antibodies as well but at £200 I declined that for now.
He said that the numbers I had presented were certainly enough evidence to start treatment and I am guessing they get more profit from trying to sell me the really good stuff which I understand is not normally available within the NHS. Armour Thyroid contains both T4 and T3 but my T3 has been tested 3 times in the last year and is always pretty much bang on mid-range.
I have had a look at web pharmacy prices for Armour Thyroid and the cheapest is £100 for 100 30mg tablets. I am willing to bet this private practice will at least double that so it is just not going to be affordable for me long term. I will see what the quote comes in at.
I suppose it might be worth trying it for a couple of months to see if it makes a difference and this would add to the evidence for when I next have a test and consulation in 6 months with my NHS doctor.
By the way thanks for all replies from the both of you I am learning a lot about this all the time and it will certainly help me when dealing with the Doctors.
I do get the nagging feeling that the NHS doctors are actively doing everything they can to not prescribe and the Private doctors are doing everything they can to prescribe so they can sell stuff to you.
I am just trying to get some answers and I am getting pretty annoyed with these professionals as I am feeling a bit manipulated at the moment.
I do get the nagging feeling that the NHS doctors are actively doing everything they can to not prescribe and the Private doctors are doing everything they can to prescribe so they can sell stuff to you.
I am just trying to get some answers and I am getting pretty annoyed with these professionals as I am feeling a bit manipulated at the moment.
This really shouldn't be the way, can you not get a second opinion at your GP's under a different doctor?
If you are already not feeling quite right you need to act on it, from what i've read things can go downhill quite quickly.
Looking back i had symptoms a couple of years before i was diagnosed, but the last six months before i was diagnosed were awful.
Are they recommending 100mg straight off? I started on 25mg and worked up to 125mg as i was told starting on a high dosage could cause other issues, but my levels were quite extreme so may be different with others I guess.
If you are already not feeling quite right you need to act on it, from what i've read things can go downhill quite quickly.
Looking back i had symptoms a couple of years before i was diagnosed, but the last six months before i was diagnosed were awful.
Are they recommending 100mg straight off? I started on 25mg and worked up to 125mg as i was told starting on a high dosage could cause other issues, but my levels were quite extreme so may be different with others I guess.
Grahamdub said:
Definitely worth pushing for an exemption card. There is a small list of lifetime conditions that entitle you to it and hypothyroidism is on there.
I am guessing it is probably because it is on the exemption list that the NHS are trying to find every reason not to treat me.272BHP said:
I am guessing it is probably because it is on the exemption list that the NHS are trying to find every reason not to treat me.
My doctor couldn't have been more helpful. He said the bad news is you have hypothyroidism, the good news is you have free prescriptions for life 
272BHP said:
I just gathered up print outs of all my previous tests and asked him to have a look. He did suggest a further test would be worth doing to check for thyroid antibodies as well but at £200 I declined that for now.
He said that the numbers I had presented were certainly enough evidence to start treatment and I am guessing they get more profit from trying to sell me the really good stuff which I understand is not normally available within the NHS. Armour Thyroid contains both T4 and T3 but my T3 has been tested 3 times in the last year and is always pretty much bang on mid-range.
I suppose it might be worth trying it for a couple of months to see if it makes a difference and this would add to the evidence for when I next have a test and consulation in 6 months with my NHS doctor.
£200!! so generous of them, fyi Thyroid UK recommend Medichecks who will do a reasonably complete Thyroid panel for £60 that includes antibodies if you did ever want it testing. As your T3 is mid range please please please don't wait, as MrGman says go back to another Dr at your practice, its not acceptable treatment of you as a patient & possible that Levothyroxine (T4 medication) would be beneficial for you to get you back feeling on an even keel the least they can do is try you on it for 6 months and see if it helps. Grab all that evidence (& any family history of relatives with thyroid issues as it does run in families) go back, don't wait & keep badgering them.He said that the numbers I had presented were certainly enough evidence to start treatment and I am guessing they get more profit from trying to sell me the really good stuff which I understand is not normally available within the NHS. Armour Thyroid contains both T4 and T3 but my T3 has been tested 3 times in the last year and is always pretty much bang on mid-range.
I suppose it might be worth trying it for a couple of months to see if it makes a difference and this would add to the evidence for when I next have a test and consulation in 6 months with my NHS doctor.
I wouldn't go trying medications just to prove the need, just be a thorn in their side about how the symptoms are affecting you.
If you think they don't want to diagnose and therefore prescribe, never have T3 results that are poop (I suspect based on symptoms and reading, my issues relate to lack of conversion/adrenal issues). My Dr's first response on querying was there is no T3 medication, which was revised to there is no NHS prescribable T3 medication when I stated my awareness of the existence of Armour & other brands of NDT, didn't even seem like an endocrinologist appointment would be offered.
MrGman I was the same, looking back now I think it was going on for a reasonable amount of time before it even came up as a possibility but those last few months were really dire
No worries, been there recently & want to help if I can as the system is rubbish & you shouldn't be resigned to feeling dire.
FYI Levo starter dose is 50mg for under 50 or 25mg for over 50 & generally is increased/decreased by 25
272BHP said:
I don't quite understand. Isn't having T3 mid range a good thing? isn't that is where it is supposed to be?
My last result was T3 at 5.4 pmol/L on a 3.50 - 6.50 pmol/L range
Yes that is an good thing (it could be a little higher but in the range is better than i'm doing, i'm not even on the bottom end) but I say don't wait as that is more reason that a T4 only medication such as Levothyroxine will get your T4 and TSH levels back in check and make you feel better, waiting 6 months isn't going to change anything apart from you feeling rubbish for longer & delaying the same conversation you could go have now, you've got enough test results behind you based on you saying you originally got tested a few times last year in addition to your most recent.My last result was T3 at 5.4 pmol/L on a 3.50 - 6.50 pmol/L range
Thanks for the reply.
I might do a Medichecks 'Thyroid Thursday' and get full thyroid anti-bodies test so at least I have a full picture of where I am. Then I can go back to the docs armed with a proper set of info.
If they still won't give me a trial then I will just forget the NHS for now. It is not illegal to source Thyroid meds from overseas and so I could just self medicate to see if this improves symptoms.
I might do a Medichecks 'Thyroid Thursday' and get full thyroid anti-bodies test so at least I have a full picture of where I am. Then I can go back to the docs armed with a proper set of info.
If they still won't give me a trial then I will just forget the NHS for now. It is not illegal to source Thyroid meds from overseas and so I could just self medicate to see if this improves symptoms.
I did get an expert opinion. I presented the private specialist (well respected in this area - I checked) with 5 blood test results. 3 of these were very comprehensive that tested nearly everything. He was actually very impressed with the amount of info I had collated. The anti-bodies test was the only thing missing thyroid-wise. There was nothing out of order apart from low iron and ferritin which is very common in people with thyroid issues.
As I said I will give it another go with the local practice after getting the anti-bodies test. I will make sure I see another doctor though.
As I said I will give it another go with the local practice after getting the anti-bodies test. I will make sure I see another doctor though.
PBDirector said:
I hope you’ll forgive me when I ask - you’ve seen a well regarded specialist, s/he’s interpreted your data and told you you don’t need treatment; what makes you think they’re wrong?
Again, I saw a Harley st guy two decades ago who tried to sell me his own crap alternative medicine so I am very much on your side of the argument when I ask this.
The specialist I saw confirmed that I do indeed require treatment and is prescribing armour-thyroid which his office will send a quote. There is no way I will be able to afford this though. I have done some digging and they like to keep you under their care and sourcing product from them presumably at vastly extortionate prices.Again, I saw a Harley st guy two decades ago who tried to sell me his own crap alternative medicine so I am very much on your side of the argument when I ask this.
arn22110 said:
That looks like a good resource! thanks for that.PBDirector said:
Have you had your consultant write a letter to your GP? And if yes what happened?
In the end what worked for me was that I paid a private phlebotomist for a blood panel, this came back on nhs paper. I took that to a gp and asked for a referral. I took the referral to a private consultant who is also an nhs consultant and he wrote the letter to the gp on his joint nhs/private letterhead.
The letter basically said I needed x treatment every y weeks and I would have a consultation with him every z months.
The gp said fine and that was that.
I might ask but as this cuts the private practice out from supplying the medication I am quite sure they will not agree!In the end what worked for me was that I paid a private phlebotomist for a blood panel, this came back on nhs paper. I took that to a gp and asked for a referral. I took the referral to a private consultant who is also an nhs consultant and he wrote the letter to the gp on his joint nhs/private letterhead.
The letter basically said I needed x treatment every y weeks and I would have a consultation with him every z months.
The gp said fine and that was that.
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