Hi everyone, I feel like I am wading through treacle with the NHS. Long story cut short:
- started on levo on 1/12/21
- tablets now about to run out
- GP won't see me for a review appt and a second prescription without a blood test first
- no morning phlebotomy appts at practice for 3 weeks
- managed to get morning bloods by going to a hospital drop in clinic 10 miles away
- phoned this morning to chase result, TSH 2.3 and FT4 10.6
(I'm really sorry but I don't have the specific lab ranges, the receptionist didn't have a clue what I was on about in the first place and had to ask two colleagues for help just to be able to read out the results to me. I believe the NHS lab ranges are 0.27-4.2 for TSH and 12-22 for FT4 ).
In November before I was started on levo, my private blood test showed TSH 7.2 (Thriva range 0.27-4.2) and FT4 15.4 (Thriva range 12-22)
I get that my TSH has come down as a result of being on levo and it is now within normal range. But why is my FT4 lower than the normal range when previously it was classed as optimal?
I am feeling a lot better - my chronic constipation has mostly resolved and I don't have to nap every afternoon just to get through the day. The GP said in the phone call on 1/12/21 that she would speak to me in three months and then we could decide "whether to keep you on thyroxine or take you off it". This comment has been going round in my head - under what circumstances would I be taken off it? From all the reading I have done, I understand I should be on levo now for life.
Blood test was taken under optimal conditions - 9am, empty stomach, previous levo dose 23 hours before
Written by
lauraleeds666
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Honestly, I think that some GPs need their thyroid hormones tested as they seem to make statements to their hypo patients that are so ridiculous no-one on this forum could make head/tails of their statements. I've told one of my GPs - I'm sorry doctor that's wrong (he stated that T3 converts to T4).
Once we're diagnosed as hypothyroid, it remains for life unless we have a miraculous recovery. The main problem is the GPs who seem to have a very cursory knowledge of anything to do with a dysfunctional thyroid gland.
As long as we're on an optimum dose of thyroid hormone replacements they should be taken with one glass of water and wait an hour before you eat (be it T4 (levothyroxine) - NDT (natural dessicated thyroid hormones) - recently removed from being prescribed in UK or a T4/T3 combination or T3 alone (rarely prescribed) we should feel reasonably well with no symptoms.
Make an appointment for a blood test, weeks ahead. It always has to be the earliest possible. Always a fasting test (you can drink water) and don't take thyroid hormones until after the blood draw.
Request - TSH, T4, T3, Free T4, Free T3 and thyroid antibodies, if not already tested. Also - if not already tested - B12. Vit D, iron, ferritin
Always get a print-out of your results with the ranges for your own records and post if you have a query.
Some NHS fT4 test machines have range [7.9-14], so that could explain your fT4 being 10., ( a result of 10 is still in range on that machine, not below range as it would be if range was [12-22] ) ... but without getting hold of the range for the machine your test was done on you can't be sure.
(The TSH ranges don't change so much between machines , but there's loads of different settings for fT4 ranges).
The "whether to keep you on, or take you off " comment is probably related to whether being on a Levo has improved your symptoms or not.
The NHS guidelines for treating 'sub-clinical' hypothyroidism (over range TSH / in range fT4) say something along the lines of " ....may consider a trial of Levothyroxine to see if getting TSH back into range improves symptoms,... if no improvement is seen then consider stopping Levo .... "
So don't worry about it ... your TSH of 7 was not 'borderline' ~ as in " not sure if it's a thyroid problem or not" . it was quite clearly over range, and Levo has evidently improved your symptoms .. proving your need for Levo .
That bit in the guidelines is just there to deal with cases where they are really not sure if Levo will be any help .
So now all you have do is make sure they continue to treat it 'properly' .
When you talk to GP , find out the fT4 range, obviously if your fT4 IS under range then a dose increase is definitely indicated.
Also , some people don't feel fully better until TSH is under 1... so again , (unless you feel well on your current dose ), you might need a dose increase to get TSH lower.
Some GP's who don't know much about treating Hypothyroidism might think that 'anywhere in range' is OK for TSH , but there are several references advising GP 's to keep it under about 2 ish.
Please see my reply to this post healthunlocked.com/thyroidu... (4th reply down) .. it gives the references for keeping TSH under 2 ish
Ah, I see what you mean. So whether to "keep you on it [levo] or take you off it" is related to the symptoms I'm experiencing and whether these have improved or not. So obviously because my symptoms have improved then I should be very clear about this in an effort to get the next levo prescription. I'm on 50mcg - should I be increased to 75mcg at this stage? How is that decision made? I've managed to get rid of needing an afternoon nap but if l don't set an alarm for the morning I will still sleep for 10-12 hours which I don't think is normal.
correct , be clear it has helped . Yes you probably should be increased to 75mcg at this stage .
.... many people will ultimately need more like 100mcg or thereabouts ,( some more, some less)
With most GP's the decision to increase, (or not ) is usually made on TSH (this practice is far from ideal , as 'TSH alone' can often be misleading.... they should also take fT4 and ideally fT3 into account too , and most important SYMPTOMS)
They may think your TSH of 2 now says 'you are fine' , but :
Your fT4 is either 'fairly low' if [7.9-14 ] or 'below range' if [12-22] .. so if they say 'you're fine ' point them to your fT4 level when asking for an increase.
A very rough guide to the dose you might need (and a good way to persuade GP to increase) is the NHS estimated dose by weight guideline which says "approx 1.6mcg Levo per Kg body weight"
Hiya, I had the GP appointment this morning. She said that as my TSH of 2.3 is classed as normal then I will be staying on 50mcg. I quoted the NICE guidance that I should be titrated upwards in increments until I get to 1.6mcg per kilo (would be 125mcg for me) and she replied that I was incorrect and the dose is not related to body weight and it is entirely to do with the TSH level. No further blood monitoring for a year. Subject closed. I could have cried. The only thing I can think to do is to look into a private consultation for a private prescription to increase the dose to 75mcg. I've seen a pharmacist prescriber online which looks to be a cheaper option than an endocrinologist. Any other ideas?
write back to GP .. (go 'old school' and use an envelope, not an email ) much easier than arguing in a stressed appointment .. requires them to respond properly too. and you have evidence of what they said.
Say that "Following your appointment ,you wish to make clear that you understand the 1.6mcg /kg is only a guide, and that you were not assuming you will need 125mcg , but that you were expecting an appropriate dose increase of 25mcg , based on your TSH still being higher than recommended in this:
"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L." Written for GP's by "Dr Iqbal is a specialist registrar in endocrinology and Dr Krishnan is a specialist registrar in cardiology, Liverpool".
"The goal of treatment is to make the patient feel better and this tends to correspond with a TSH in the lower half of the reference range (0.4–2.5 mU/l).
If a patient feels perfectly well with TSH between 2.5 and 5 mU/l there is no need to adjust the dosage" .
And that to your knowledge, the NHS thyroid guidelines do not warn of any increased risks associated with a TSH in the lower part of the range, as long as it remains in range .
You do not think an increase of just 25mcg will lower your TSH too far , and so you would like a be given a trial of an increased dose of 75mcg/day for a few months to see if it improves your symptoms of (whatever they are, preferably things to do with not being able to work)
, and you are happy for them to review this trial with a repeat blood test after a few months on 75mcg.
Say you hope she will be willing to reconsider her previous refusal to increase your dose to 75mcg , but if she is not , would she please respond in writing to explain her reasons for refusing your request.
Thanks for the advice. It's a small practice and if I get on the 'wrong side' of this GP I do worry that my future healthcare will suffer (in any respect, not necessarily thyroid related). I swapped to this practice from the other nearest one where a GP missed my appendicitis and I walked round for two weeks until it burst and I was admitted to hospital almost dead with a burst appendix.
This whole palaver makes you want to order some 50mcg as a repeat prescription from an online pharmacy and be naughty and self dose at 75mcg by cutting some in half, doesn't it
yes it does ,, but needing thyroid replacement is along term issue , so you need to think long term. Worst case scenario is this:
if you just 'top it up yourself' at this point, then at the next annual blood test your GP may very well decide that she needs to reduce your dose, if she thinks you blood results are from taking just 50mcg ......... so you end up being prescribed just 25, (or even 'none at all' and if that were to happen then your 'hypothyroid' diagnosis effectively vanishes ).
If your prescription goes to '0' while you are still taking self sourced levo , it will be extremely difficult to get any NHS GP anywhere to re diagnose and prescribe any Levo at all, unless you come off it for long enough for your TSH to rise significantly and stay well over rage for a repeat test , potentially meaning you needed to be taking no levo at all, for several months .to get 're-diagnosed'.
Self treating Levo patients are just as much of a bug bear to GP's as those who stand up to them with factual information and guidelines to get their Levo dose optimal.
Self treating with thyroid hormones is likely to create more problems with how you are viewed and treated in future by a GP , than being assertive but polite now will.
Once they suspect a patient is self treating with thyroid hormones but not being honest about it, they will tend to put any future health issues down to that.
If the dose you take isn't correctly recorded on your records and if you end up in hospital for anything else . the hospital will only give you the Levo dose you are prescribed.
So there can be big problems down the line if you start self treating before the NHS have got you on something like the right dose that makes you feel well.
Lots of people do 'tweak' the doses they are prescribed by 'a little' without the GP's knowledge, but they are doing that from a place of a long term firm /accepted diagnosis with a repeat prescription of say 112.5 , but they actually take eg 125.... but to start down this path at such an early stage before you are anywhere near the right dose, it mean you are having to self manage and self source and have difficult discussion with GP's about thyroid hormone / symptoms , forever.
So all things considered it's probably easier and less stressful to deal with it up front and let them have the full facts about how the prescribed dose affects your symptoms , and your blood tests. and keep the DIY route up your sleeve for future use if all 'official' avenues have been exhausted.
At the moment , with TSH still being over 2 , you have an easy , clear argument for an increase, with no way for them to say your current dose is 'more than enough', and no way for them to say an increase will lower your TSH to levels that (they believe) put you at increased risk of heart or bone issues , because an increase hasn't been tried yet.
There may come a time when you do not have such a clear argument for an increase that is within their guidelines , so i think that not using this opportunity while you have it, might be a mistake.
You're right. I just don't have it in me emotionally at the moment to try and tackle this GP who told me I was incorrect after I quoted the NICE guidelines to her. I generally feel ok, not optimal, just ok. If my symptoms return (chronic constipation, crushing fatigue and rapid weight gain) then I'll represent and insist I'm treated based on symptoms. I do a Thriva blood test every quarter anyway so if the TSH goes over 4.2 then I'll also be straight back to the GP with a copy of the Thriva bloods.
I suppose the main thing I am wondering about is whether I could go completely private with a private GP consultation and an ongoing private repeat prescription for a higher dose and private blood monitoring? If the NHS GP is aware I've done this and I communicate it clearly and they have me coded in the NHS record as hypothyroid, is there a problem with that? I get a private prescription for acyclovir and my contraceptive pill so I don't have to engage with this NHS bunfight every couple of months for those meds, so I wonder why not sort the thyroid out the same way?
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