Hi,
I know thyroid UK guidelines following a change in medication are blood tests 6-8 weeks later. I’ve requested a blood test from my 6 weeks GP following a change in my levo and T3 added and been told that the lab wouldn’t accept this until 3 months. I’m in the process of arguing this, but is this a normal situation?
Some labs do have a time limit on some tests, I've had this myself where GP has requested a test and lab doesn't do it and sends a message that xx amount of months between tests is required.
Looking back at my old tests there have been times when there has been 2 months between tests so I suppose it could be down to your area's policy.
Oh I see - maybe lol have to wait but as guidelines are 6-8 weeks with a change in medication it doesn’t seem right
Sorry to hear this. I wonder if someone in the labs have confused other tests....with thyroid tests. It seems bonkers that you have to wait three months because of an arbitory lab rule, goes against NHS prescribing protocol!! Lol....
So NHS protocol is 6-8 weeks when I’m being told to wait 3 months?
Well the labs in your area are saying 3 months ...Nice say this:-
"The NICE clinical guideline recommends:
Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.
Consider starting LT4 at a dosage of 25–50 micrograms per day with titration for adults aged 65 years and over, and adults with a history of cardiovascular disease.
The British National Formulary (BNF) recommends:
For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.
For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily."
cks.nice.org.uk/topics/hypo...
That's actually reviewing it more frequently than the 6-8 weeks reviewing would involve a blood test though they dont state this specifically.
Essexlil waveylines
There are two sets of guidance on hypothyroidism.
There is the "guideline" and then there is the "clinical knowledge summary (CKS)". The CKS came first, and then the guideline came later (I think).
The British National Formulary (BNF) also gives information on individual drugs and that predates both CKS and guideline - its been around for decades and is the paper book that many doctors use to look up prescribing, dosing and other info in their surgeries. Nowadays of course, it is all online, but I've seen doctors who still use their paper version of the BNF. I have no idea how often the BNF is reprinted on paper or how often doctors who use it replace their copy.
The NHS makes changes to any or all of these usually without a fanfare and so they spring surprises on patients as a result when they make changes and don't advertise the fact. There are times when they don't agree, as is the case now.
The guideline can be found here :
and the info on frequency of testing in the guideline can be found here :
nice.org.uk/guidance/ng145/...
Adults
1.4.3 For 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.
1.4.4 Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine.
The CKS can be found here :
cks.nice.org.uk/topics/hypo...
and the info on frequency of testing can be found on that page :
Review the person and recheck TSH levels every 3 months after initiation of LT4 therapy and adjust the dose according to symptoms and TFT results. Consider checking FT4 in addition if the person has ongoing symptoms on treatment.
Aim to resolve symptoms and signs of hypothyroidism.
Aim to maintain serum TSH and FT4 levels within or close to the normal reference range.
If symptoms persist, consider adjusting the dose of LT4 further to achieve optimal wellbeing, taking care to avoid over-treatment.
And in the BNF the info on Levothyroxine can be found here :
bnf.nice.org.uk/drugs/levot...
The info on frequency of testing is sparse in the BNF, and is different for Adults and the Elderly :
Primary hypothyroidism for levothyroxine sodium
By mouth
Adult
Initially 1.6 micrograms/kg once daily, adjusted according to response, round dose to the nearest 25 micrograms, dose to be taken preferably 30–60 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.
Elderly
Initially 25–50 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily, dose to be taken preferably 30–60 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.
And then, as waveylines found, the CKS has a reference to initiation and titration which is different to all the above and says :
cks.nice.org.uk/topics/hypo...
For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.
For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily.
So, pick whichever one of these best suits your requirements and refer to it when talking to doctors about your dose and the frequency of testing.
One thing to be aware of is that almost all the NHS info I've listed, wherever it comes from, generally assumes that the underactive thyroid patient has Primary Hypothyroidism with occasional mentions of Subclinical Hypothyroidism.
Other possibilities are mentioned rarely but the average GP usually knows nothing about them.
Secondary/Tertiary/Central Hypothyroidism are rarely mentioned. Problems such as Resistance to Thyroid Hormone (RTH) doesn't get a mention. Iodine Deficiency doesn't either and I've never heard of anyone getting tested for it. Sheehan's Syndrome is another one that gets a mention on the forum occasionally, but doctors rarely, if ever, even know it exists. Affected women struggle enormously to get this diagnosed. (Men can't have Sheehan's Syndrome - it occurs as a result of severe haemorrhage during childbirth.)
There are some more causes of hypothyroidism here :
cks.nice.org.uk/topics/hypo...
...
See the very first paragraph of the "Guidance" (or Guideline - the words seem to be used interchangeably) :
This guideline covers investigating all suspected thyroid disease and managing primary thyroid disease (related to the thyroid rather than the pituitary gland). It does not cover managing thyroid cancer or thyroid disease in pregnancy. It aims to improve quality of life by making recommendations on diagnosis, treatment, long-term care and support.
Thanks Humanbean. Given the variation of what to do seems to me that it's not an exact science and must be confusing! And what happens on the chalkface just seems to be to delay matters further. Every three months for example is very slow indeed especially if you consider the fact that these days the recommendation is to treat when TSH is over 10 so by the time people do get diagnosed their Hypothyroidism is far less likely to be mild.My GP Surgery have now also implemented their form request for an appointment. They aim to response in three weeks. If u have a temperature, chest pain or are dizzy they state go to a&e. GP surgeries are no longer doing their job. I went in in Friday at 4pm to drop something off. The surgery had one patient in the waiting area. Hardly busy. It used to be full. Despite this the receptionist sighed when I dropped my full bag of needle containers off. I think they've lost touch with their essential role. The pandemic saw the collapse of GP Surgeries. So as far as treating conditions like a Hypothyroidism you are on a hiding to nothing. Mine don't even ring but text u!!
Yes our surgery is the same - can’t get an appointment for weeks but when you go in the waiting rooms got at most two people waiting to be seen and that’s sometimes by a nurse or phlebotomist! What are GP’s doing?
Oh thank you I’ve followed your links and see where the 3 monthly bloods come in. Surely GP’s can over rule this if they think it necessary? Three months is a long time if you’re on the wrong dose or medication! Thank you for your help - thank goodness for thyroid UK as we always have some kind of battle on our hands. So unfair when we’re just unwell and want someone to put it right.
I don't think it would be to their financial advantage to override the 3 months bloods rule. And these days it seems that the NHS is all about saving money in as many situations as possible, even if it reduces health outcomes for sick people. We are being driven into the arms of the private medicine and the charge seems to be unstoppable.
But even in private medicine they are under the cosh Humanbean....and are penalised More likely driven into self treating.
I was thinking of the possibility of the NHS doing something e.g. a test that they would have done 10 years ago, but now patients have to pay privately in some form or other, or just do without the test altogether.
I have noticed that the choice of tests done by the likes of Medichecks and Blue Horizon is shrinking.
That's scary that the choice of tests is shrinking. I wonder why....
Probably because too few people ordered them.
I don't like the fact that I can't get electrolytes tested, and also calcium.
When I first started all this two years ago, my doc insisted on two months between tests. I’ve been back recently and had a dose change and they’re saying they won’t test until after three months. Really frustrating.
I’ve just had my dose reduced - without consultation and against my wishes - I’ve written a complaint
. But GP has asked me to book a blood test in six weeks time.
oh so when it suits them it’s 6 weeks! So bad to reduce your dose without speaking to you! I keep phoning to see if my GP has answered my query about wanting my blood test after six weeks on new dose/medication but the receptionist just says she hasn’t replied yet.
I complained when I got a text from a GP. I pointed out a text is NOT a consultation. The doctor who issued the text rang me..... After I explained he said Oh right that's why your results are so out of kilter.... I said I could've explained this if you'd rang or seen me. Back to usual dose thankfully. But it feels like you are fighting a constant battle, for get any medical support!!
Yes it’s so unfair - wonder if people with other illnesses have to put up with what we do because of ignorant people who don’t seem to understand the complexities of this condition and how bad we can feel when the balance in our bodies is a mess but looks great on blood tests!
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