Could you help me make sense of these? 18 months ago my GP lowered my levothyroxine dose on the basis of a suppressed TSH. I got all the symptoms back. I did not have a blood test between Jan 2022 and a fortnight ago. I waited 15 months for this hospital appointment.
The consultant wrote to me with the results of the blood tests. Unfortunately he has not included any reference values so I've no idea if they're good or bad.
Free T4 14.8 pmol/L
TSH 4 miu/L
Total T3 0.9nmol/L
Vit D 92
Bone profile calcium 2.32
HbA1c 32
Thanks in advance!
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Blobby1234
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Sadly not only has he not included reference ranges, but he hasn’t tested FT3 either. It’s almost impossible to comment on your thyroid status based on the above information
Looking at your FT4 I’d say it looks quite low when I consider the ranges I’m familiar with.
If these results follow a decreased dose of Levothyroxine and you feel symptomatic, I’d say that you need a dose increase.
The TSH is no longer suppressed; in fact it’s rather high. I think the price you’ve paid for raising this TSH is far too high
Thank you. He declared straight off that he wasn't doing a Free T3 test, despite that being the reason I'd requested a hospital appointment. I am going to get one done privately. I'll use one of the recommended ones on here. Any idea how long the results take to come back?
Just a few days. Pft. He’s deliberately not done an FT3 test because he knows that it will show that you’re undermedicated. Just what are these people trying to achieve?
Being obsessed with TSH at the expense of low hormone levels of is crazy! Kick him to the kerb
If only. I've waited 15 months for this appt with guy whose English, whilst well better than mine in any language other than French, umm, was not totally accessible, basically stop whining.
Medical practitioners now have to demonstrate that their English is good enough to allow them to communicate clearly with patients and enable them to access advice and information.
This hasn’t stopped the problem though. It’s such a delicate subject. Patients tiptoe around, afraid to say that they can’t understand because they’re fearful of being perceived as racist etc
I don’t hesitate to ask if doctors can speak more slowly / clearly.
It's not enough that your doctor is being arogant about your treatment, that the hospital has wasted your time. Now you're going to pay for a private test. The whole thing is a disgrace. I can sympathise with you and I hope you get a proper test and tweak your medication ASAP.😊😊
I only got some control of my health when I started testing myself with Medichecks twice a year. It's the only way to see what's going on and whether medication, vitamins (d,b 12 etc) and nutrition are helping. I've had to bite the bullet financially and pay for this. I have also shared the results with the gp by sending the results to be added to my medical records. This actually led to amuch more helpful conversation at the annual review of my meds.
I really can’t get my head around a GP happily discussing results for tests you’ve accessed privately. He should hang his head in shame. He should be ordering these tests for you.
I would suggest that you contact your Endo's secretary and ask for the reference ranges for the blood results otherwise we can't really make a lot of sense out of them.
That said, your TSH is far too high and you need a dose increase.
When you do your blood tests do you remember to leave a 24 hour gap between last dose of Levo and blood draw? This is recommended so that you don;t get false high results and have your dose wrongly reduced.
It's also recommended or even essential to retest your blood levels of hormone 6-8 weeks after any dose change.
Your vitamin D is about right. Optimal is said to be 100-150.
What supplements are you taking and what were you other vitamin results? If you have been that hypo for a while they are likely to be low if not deficient.
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
We never usually suggest that folks base doses on TSH alone but.......Without the ranges for the other results we can't be sure to interpret them correctly so let's ignore them and look at TSH.
The TSH ranges do vary but not by much. The bottom of the range is somewhere usually 0.20 to 0.50 and the top 4.5 to 5.5. Nice guidelines suggest on levo under 2 for TSH and a normal person generally has a tsh nearer to 1.
On that basis a tsh of 4 would suggest that you need an increase of levothyroxine.
This can be confirmed by testing ft4 and if poss ft3 to see if they are low in there ranges. Or given that the GP doses by tsh ask for an increase based on nice guidelines and a result of 4 plus symptoms returning.
GP (looks about 12 and I seem to know more about my condition than her) told me she would be in trouble if she didn't reduce my dose on the basis of the TSH test, which on 100mcg a day was coming back at 0.32. I don't know what's causing this lurch from <1 to 4 with only a 25mcg reduction in dosage but I was kinda hoping a consultant endocrinologist might. 🙄
TSH test, which on 100mcg a day was coming back at 0.32.
NEVER agree to dose reduction based on just TSH
I don't know what's causing this lurch from <1 to 4 with only a 25mcg reduction in dosage
Well dose been reduced by 20% so that’s far too much
Never reduce dose without getting FULL thyroid and vitamin testing
ALWAYS test early morning, fasting and last dose levothyroxine 24 hours before test to get highest TSH
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with themand their families and carers or guardian. "
Comprehensive list of references for needing LOW TSH on levothyroxine
10st 6 , 5Ft 5. I'm at the top end of normal, but I haven't been any eating/boozing any more than usual. I'm not a idiot, as I try to persuade the GP.. she seems only to work on equations.
Oh. Not 100/75 alternate days then . I wouldn't MIND but this must be the 15th time I've been round this carousel. It's always up to me to find a GP who can be persuaded/bullied into restoring the daily 100mcg. I'm fine on that.
“If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. ”
From the very long read. There we have it! TSH can be lower!
Sorry, I should have made that clearer: it was via the links within it. See section 4.3 Persistently raised TSH levels despite established levothyroxine monotherapyin the recent consensus statement Use of liothyronine (T3) in hypothyroidism: Joint British Thyroid Association/Society for endocrinology consensus statement.
It’s a bit annoying that they don’t put all the information in one place.
Pretty standard with GPs these days is my experience. Sigh..... If you can get an appointment that is!!I do not trust GPs any more. They just follow the pathways on their screens and seem to know very little. Not just on Hypothyroidism but chronic conditions. Last one wanted to test my B12, because I'm on line term B12 injections. I had to put her straight. The one before that wanted to cut two out of three heart medications cos she thought they were the same. They're not! Had to put her straight. She thanked me but it's just not good enough.. And so it goes in
... A constant having to correct GPs ignorance. I'm tired of it. I avoid as much as poss which isn't hard these days!! That way I reduce the risk of harm.... Lol
She's covering her tracks/back. You DO know more about your condition than her. If you keep in touch on here you will see everyone (nearly) is following their own symptoms and adjusting their Levo accordingly.
Practice manager? Doctor police? My GP neighbour told me she'd be held responsible if a patient suffered the effects of too high a dose when the TSH indicated they were over-treated.
She is quite correct. However in your case, the TSH indicates nothing about your thyroid levels
If it were me, I’d be informing Practice Manager that I’m contacting CQC. That should move them. Make sure that you actually do it. There’s a link on line.
I understand they're reluctant to do FT3 tests because the treatment is expensive. I'd be perfectly happy to meet that expense myself if that was the cause of the symptoms. As it is, the consultant (I have no choice whatsoever, and I see he is *surprise!* primarily a diabetes specialist) seemed keen to blame my tiredness on diabetes (nope) or lingering long-covid (51 weeks ago).
It's a myth that T3 treatment is expensive. Without T3, I needed a raft of medications to off set all the untreated symptoms signs when on Levothyroxine. It cost them more than prescribing a NDT.
They're always keen to blame it on whatever it isnt. I have Fibro and according to doctors its responsible for everything that ever ails me, a veritable Pandora's box!
I just hope I never get anything life threatening as I could die whilst medics just shrug and say " its Fibro" again. Thing is we know our bodies, especially those with chronic conditions, its instinctive. We've learnt to know our baseline.
Personally as soon as I get up in the morning I do a body scan, its an unconscious thing but I check for things like stiffness, pain, fatigue levels etc. I know what's 'normal' for me based on things like sleep quality, what I've eaten the day before, activity levels, anything I've done out of the ordinary maybe. So anything abnormal or new is kept an eye on if it can't be explained away, especially if it persists.
Doctors may study for years and see thousands of patients but all of this will never trump your lived experience, you are the expert of your own body.
Yes I tried to avoid getting a diagnosis of fibromyalgia because it’s a wonderful ‘thing’ for doctors to fall back on, especially as there is no treatment. They seem remarkably self satisfied to be unable to help. Before my diagnosis of hypothyroidism it’s the diagnosis I had come up with for myself. However I have failed, they say fibro. I think strictly speaking, it is hypothyroid myalgia (description is virtually identical - but treatable with optimum thyroid meds). The other possibility is hypothyroid myotonia but same solution. Optimum meds. They just seem to have such limited knowledge combined with such arrogance.
If I meet a new doctor I avoid mentioning I have Fibro, I'm fed up with it being the axis of evil and responsible for all my health issues. Its just lazy medicine.
Yes and we can get away with that because mostly they do not bother themselves to familiarise them selves with the patient they are about to see. I often wonder if they do have an actual summary in front of them, drawn from our ‘full’ notes. However I see no evidence in their manner of even reading a summary before I see/speak to my doc. Wing and a prayer medicine.
When they dont know what's wrong, rather than being honest but offering to run tests its always "well it could be Fibro" or anxiety. My MIL has the same experience with type 2 diabetes. I'm curious if women get fobbed off with lame excuses more than men.
I was nearly sent home with acute appendicitis, which my own GP had aleady diagnosed because the junior A&E doctor didnt think I had it. Fortunately her consultant overuled her and got me admitted.
When they operated it was gangrenous and on the verge of bursting. I'm surprised they didnt manage to shoehorn Fibro into that somehow 😂
Crikey (re: appendicitis - would have thought that was one of the things they would teach them). We could probably do a poll on the forum to check the men/woman thing. I think it’s highly likely but I would be particularly interested in the replies from men on the forum. I think they might be getting fobbed off too, just differently.
Its not the only time lol, last month I was going back and forth with chest pains and shortness of breath. I'm pretty stoic and soldier on for the most part, I've never been one for making a drama but I was in pain, not able to lay down.
I was mindful that heart attacks in women present wih different symptoms to men and are frequently undiagnosed.
In the end I got diagnosed with Pericarditis, inflammation of the fluid around the heart, but not before one A&E doctor suggested it was indigestion and sent me home 🤦♀️
Oh God, it just goes on and on. I admit I can’t always make the connections that they think are non-thyroidal illnesses - I am not a doctor but we are becoming pretty good at joining up the dots for ourselves. Doctors either appear to be children or arrogant old men. Not doing any of us any good! I have attended A&E for heart problems on a number of occasions. One time I did even have a heart attack. That happened in Scotland and lots of issues came up. In the end the cardiologist up there did not follow up (by informing/questioning my cardiologist down here in England it would seem, probably a situation which would be seen as criticising a colleague or some such nonsense) and another twenty years passed with horrible symptoms until finally diagnosis 2 years five months ago. Still waiting to be treated respectfully and timely. No chance it would seem, since I have landed with the NHS Endo Supremo who is an idiot.
In order to justify not doing FT3, he said my symptoms could be explained away by other disorders e.g. diabetes, anaemia (FBC and U&Es came back normal), vitamin deficiency. Turns out they aren't, so we're back to square one. I have a return appointment on Oct 17th. Hoping to have private FT3 test results by then.Thanks everyone for replying!
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