Ranges redacted by my (redacted) GP ! - Thyroid UK

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Ranges redacted by my (redacted) GP !

Rapunzel profile image
13 Replies

Hello all

How's this for a bit of controlling nonsense ? I have been getting increasingly confused with talk of ranges on the forum as my test results never have them. Suddenly the fog lifted on Friday when I got my third lot of bloods. The range is marked (PJ) my GP's initials, for everything, not just thyroid stuff..

He is effectively preventing me from taking my results elsewhere to assess his treatment. Here are the three results...can you tell anything from them at all ? And another question, do I have the absolute and inalienable right to know the ranges ? What a complete (redacted) he is ! Roaring mad and feeling no better on tiny levo dose handed out like special sweeties with 3 month between bloods. ( Started on 25mcg now on 50mcg...but only afetr moaning...I felt well once, for about two hours three weeks ago... Grrrr.

14/ 08/12 Serum free T4 level (PJ) 13.70 pmol/L

lab comment: Raised TSH subclinical hypothyroidism please rpt in 3m

Serum TSH level (PJ) 9.02 mu/L

Re-test in 3 months TSH (PJ0 (EHR)

Done at 4pm

13/11/12 Serum free T4 level (CD) 14.50 pmil/L

Serum TSH level (CD) 5.84mu/L

lab comment Thyroxine dosse may be slightly increased

Raps comments - I'm not on it at this point you (redacted ) muppets

Done at 4pm

Put on an intial does 25mcg, mid November, returned after a month still feeling rubbish, increased to 50mcg but told no further increases would be given prior to next blood test, which could only take place after a 3 month wait..Asked about B12, ferritin and T3 levels. Looked at like I was a particularly loathesome amoeba, concerns brushed away. 53, post menopausal, bald and hypertensive. Taking my dose at bedtime. Trotted along for new bloods last week

21/02/13 Serum free T4 level (PJ) 13.80 pmol/L

Serum TSH level (PJ) 4.26mu/L

Done at 9.30 am

Appointment to see GP tomorrow afternoon. I can't tell you how rubbish I feel. Working like a demon because I'm so frightened that if I stop I'll seize up. All and any advice received with thanks.

Raps x

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Rapunzel
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13 Replies
helvella profile image
helvellaAdministratorThyroid UK

Are you quite certain that his initials are not simply indicating that he had seen the result?

It appears that many medical records do not include the reference ranges. In my view that constitutes inadequate record keeping but I doubt I'd get many agreeing with me from within the "profession".

You could ring or email the lab itself and ask them. If necessary, you could put in a Freedom if Information request but I doubt that would really be needed.

Rod

nostoneunturned profile image
nostoneunturned

As you have an inalienable right to be given copies of any blood tests if your doctor is withholding knowledge of the ranges from you then this is wrong, as you are not actually getting a copy of your blood test.

There is no reason for your having to wait for 3 months for the third blood test in February as when the dose is being titrated up to the optimal level then tests and increases as indicated by tests are usually at 5, or 6 weeks intervals at the most.

Even without the ranges your TSH is obviously too high, most feel better at 1 or less, and with this TSH your FT4 is most probably close to the bottom of the range, but wouldn't it be nice if we had the ranges.

The main site at:

thyroiduk.org

has a lot of information, but sounds as though you know that already.

Always try to have your bloods taken as early as possible in the morning as your TSH will be higher then so emphasising the need for treatment. TSH has a circadian rhythm, so much so that in a study checking TSH at different times of day the comment was made of some diagnosed hypothyroid participants that TSH levels late in the day indicated the person would not have been diagnosed hypothyroid asTSH was low.

I too was noticeably balding years ago but to console you, my hair has thickened up with correct treatment. See-through hair is very embarassing especially when rained on so I feel for you, it is not a good look, but it will grow back.

You can have B12 and folate levels tested at myrios.co.uk for a mere £30.

Admin, I have a sudden clutch of guilt, am I transgressing the rules in that last line?

Rapunzel profile image
Rapunzel in reply to nostoneunturned

Thanks NSU, I have the link ! Will also talk to my GP about time between blood tests but the receptionists are always, 'Oh, no they send you away if we ask for them more than every 3 months...' Whaaaat ?

Raps x

helvella profile image
helvellaAdministratorThyroid UK in reply to Rapunzel

Quote this at them:

Once diagnosed, patients normally start the estimated full or just below the full replacement dose immediately unless they are over 50, have severe hypothyroidism or have cardiac problems, in which case, the levothyroxine dose is gradually increased from an initial daily dose of 25 - 50 mcg levothyroxine. This is then increased by 25 – 50 mcg/day at 3-4 weekly intervals until a normal metabolic state is attained.

mhra.gov.uk/home/groups/pl-...

That is from the MHRA's special report on Levothyroxine from January 2013. If your receptionists and GPs know better than the MHRA, then they should be telling the MHRA how wonderful they are and how wrong the MHRA is.

Rod

helvella profile image
helvellaAdministratorThyroid UK in reply to helvella

And the introductory page:

mhra.gov.uk/Safetyinformati...

nostoneunturned profile image
nostoneunturned in reply to helvella

Brilliant, Rod, thanks. Great, unassailable imformation.

nostoneunturned profile image
nostoneunturned in reply to nostoneunturned

Shouldn't speak with mouth full! (Coffee break)

INformation, of course.

Rapunzel profile image
Rapunzel in reply to nostoneunturned

And BTW, after years of candy floss hair, I got it sorted with a topper. My hair's gorgeous now ( It's mine, I paid for it lol)

xx

helvella profile image
helvellaAdministratorThyroid UK in reply to nostoneunturned

No problem posting that link - but we usually post this:

thyroiduk.org.uk/tuk/testin...

Provides a choice of labs

Explains that TUK can gain from tests ordered and sometimes discounts might be available to members of TUK. But Myrios are not there.

Rapunzel profile image
Rapunzel

Thanks Rods. Will do this tomorrow.

Raps

shaws profile image
shawsAdministrator in reply to Rapunzel

Hi Raps

Just to say that if you want to make a personal reply you have to press the blue Reply to this and another box will open. The person is then notified that you may need a response.

Framboise profile image
Framboise

You could try phoning the lab that tested your blood and asking them for the ranges. I've phoned my lab several times and they've been very helpful, even telling me once that because I take ERFA, my GP should write on the request form that I take T3 and then they'll test that level too.

To talk to them just phone the hospital switchboard and ask for the lab, sounding confident, then say something like you're a patient and you've been given your blood test results but there are no ranges for you to compare with old tests and the GP's receptionist couldn't help with them so can they tell you what they are? It should work!

Heloise profile image
Heloise

I wish GP's would look at "normal" ranges in this way:

A comparison of values relative to each other yields a great deal of information that would be lost if the values were viewed independently of each other. For example, if the normal height for a man is between 5’3” and 6’ and normal weight is between 130 lbs and 200 lbs., scanning the results column of a lab or other report (for flagged abnormal values) would declare a man who is 5’3” tall weighing 200 lbs to be just as normal as a man 6’ tall weighing 135 lbs. Both are in the ‘normal’ range and therefore would be considered normal. In reality, however, simply looking at a short/obese man next to a tall/thin and a possibly undernourished man would suggest that the two are more than likely not in the same state of health.

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