Finally got some results - but not what expecte... - Thyroid UK

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Finally got some results - but not what expected. ???

PoppyRose profile image
14 Replies

I've been envious of how easily people on this site seem to have got their results and have finally got mine. I haven't a clue what it means!! Can any one help. I didn't get a detailed report - just this as it appears on each sheet. I was expecting all the 'codes' that I have researched now but this shows I am normal - I think!

I did go back 4 weeks ago not feeling much difference after 18 mnths on 50mg Levo and GP double checked my Iron and did agree I was border line and put me on Ferrous. Still not much difference.

Feb 2012

(442W) Serum 4.2 mu/L (0.30

TSH level -

6.00)

(IT1841) - Normal

July 2012

(442W) Serum 3.7 mu/L (0.30

TSH level -

6.00)

(IZ) - Normal

Thank you.

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PoppyRose
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14 Replies
nostoneunturned profile image
nostoneunturned

Your TSH has gone from 4.2 to 3.7? Still much too high for one being treated. And your GP is not only happy with that, apparently, but has had you on only 50mcg (not 50mg -you would go into orbit!) for 18 MONTHS?

Sorry,no idea what the two items are that have been marked as "Normal" , but you are entitled to ask for, and be given, an explanation - it is your body after all.

With this kind of non-treatment, could you consider finding yourself another GP who knows the TSH should be 1 or under, that 50 mcg IS only a starting dose, that the dose shold be raised gradually with a blood test, to monitor the effect of the raised dosage, carried out approximately 4-6 weeks later; then another increase in dose as necessary.

You will find all sorts of useful info on the main site, try

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

for starters and you can read there what your GP should be testing.

Best of luck, please come back with any other issues.

PoppyRose profile image
PoppyRose in reply to nostoneunturned

Thank you!!! So I'm not going mad?

I feel soooo relieved with all the advice.

Yes it.s mcg!! typing error. what a difference a character makes. LOL!

I had already read so many results being translated on this site and know that what they have given me has been... 'limited' shall I say. ;) The GP jsut keeps saying i'm 'normal.' !!

I haven't looked at the link yet but will do ASAP.

xx

PoppyRose profile image
PoppyRose in reply to nostoneunturned

OK thank you,

This reply is to all that have answered .

(not sure how I post 'to all' without re-posting after each individual response )

I have just looked at the link above - again - and it shows that my (4.2) current 3.7 is top end of range of 0.4 - 4.5 and GP & nurse are insisting this is 'normal.' within the range of their (0.30 6.00) I understand that.

Dr Anthony Toft however states the ranges to work with are 0.15 - 3.5 and so I am far too high! He also states that TSH should be 'low or undetectable' so should my TSH be this low?? if this is the case WHY are my GP's and Nurse OK with 4.2 & 3.7. ??!? I'm so confused! (sorry not directed at you just the current state I'm in)

This is why when I have kept asking for a re-assessment because I'm not feeling better - but then some results show I have no clout and feel ridiculous! One GP laughed the words 'internet' when I said I have been reading up on Hypothyroidism and ranges.

... and breath...

What do you think my next stages should be? Is there anywhere/one I can contact that can act as an advocate? Or should I just ask for a referral? I would pay to have my health back.

I have little faith in my surgery/GP/Nurse; I do read and challenge if I'm not convinced, I've had to do it with my mother's health too. How do I find a Surgery that has trained GP's in Thyroid health?

I really need to get sorted. I'm NOT coping with things well at all and have just blasted my family telling them I don't want to be around any more. I have just returned to work after 3 months sick (not related) and really hoped I would be in better health to cope with when I return - but I feel worse than ever.

xx

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helvella profile image
helvellaAdministratorThyroid UK in reply to PoppyRose

You are absolutely right - Toft does indeed suggest that lower end (or even below) on TSH is fine. And, in general, I agree.

Your story of being under-treated is so common. Clearly, GPs (and nurses) follow some simplistic guidelines and assume all is well if TSH falls within reference range. The upper-end of the reference range is ONLY acceptable when used as a screening test. That is, they try to avoid over-diagnosing.

However, always remember the things that so often go along with hypothyroidism:

Low vitamin B12

Low folates

Low ferritin (yes, I see you are on ferrous)

Low vitamin D

Maybe, at the least, ask to be tested for these?

Have you tried discussing Toft's book with them?

Unfortunately, we see all too many people get referrals and end up no better off. Nonetheless, it might be worth trying. Even asking for a referral might nudge someone to allow you to try an increase (i.e. as an alternative to referring you).

Rod

PoppyRose profile image
PoppyRose in reply to helvella

Thank you helvella,

The screening test theory sounds feasible - but they should surely dig deeper if I complain of symptoms still.

Not sure about any of the above apart from the ferritin

I insisted that I was still tired - he reluctantly prescribed Ferrous

I now take Vit D3 1000iu (25ug) - thanks to this site - but taken since last docs visit.

'Internet' was laughed when I mentioned doing some reading about ranges etc... so not taken any print, books with me.

I will re-book to be referred - obviously they haven't done what I have asked for - a full report of bloods for all tests.

I had to request in writing for permission for me to have a written copy of results.

xx

nostoneunturned profile image
nostoneunturned in reply to PoppyRose

Could you try buying the book by Dr Toft, Understanding Thyroid Disorders, available from chemists/Amazon, show these scoffing GPs that it is written by a doctor who has been President of the British Thyroid Association and President of the Royal College of Physicians of Edinburgh, and dare them to argue with the words of such an authority? Ask for appropriate treatment, if it is not forthcoming then get yourself referred elsewhere, remembering that you can choose who you will be seen by, and help for your choice is available from people here.

I am so sorry for your problems and hope you can make progress.

PoppyRose profile image
PoppyRose in reply to nostoneunturned

Hello and thank you for your support. I feel wrecked.

Yes I have the book it was the first thing I got to learn about this miserable condition. It's permanently sat by my computer for reference - I have to 'double' and 'triple' read everything these days I don't seem to retain very well at times :/

I think I will prep some documents etc. for my next appointment.

I have also been in touch with my husband's company's private health and they say I CAN have a private referral AND subsequent treatments if I believe I am still having symptoms for a condition that my GP hasn't resolved and still leaves me in poor health. That's good news and a new one on me!! So I will post a new question for referral suggestions. I have no idea who is reliable any more.

I have also just discovered (though suspected for some time) health problems with my daughter and that needs urgent intervention (feel free to see profile) and basically in shock mode. Some symptoms have just hit me ten fold, anxiety, headaches, fuzzy head, memory, and I accept that is stress related - but If the GP/Nurse tries to tell me again it's not more medication I need it's my life style - I'll have to be removed from the surgery!!! ;)

Best wishes.

xx

helvella profile image
helvellaAdministratorThyroid UK

The 442W is a Read Code for "Serum TSH level".

The (0.30 - TSH level - 6.00) is a slightly odd way of saying the the reference range is between 0.30 and 6.00.

The IT1842 and IZ - I do not understand.

Your TSH levels - 4.2 and 3.7 - are likely too high for someone on thyroid hormone. If things are working right, we would expect to see TSH lower than 2 - possibly as low as 0.30. I would be surprised if you were not under-dosed.

That the report says "normal" merely means that the result was within the reference range and is a wholly inadequate assessment of your thyroid status.

nostoneunturned profile image
nostoneunturned in reply to helvella

Those results are as abstruse as possible.

Thanks Rod for the unravelling of "442W", who among the uninitiated could possibly have guessed what it meant!

helvella profile image
helvellaAdministratorThyroid UK in reply to nostoneunturned

Who among the cognoscenti, even?

They are a disaster in that they are not readily to hand, they are not esy to remember, and they keep changing them. Unlike some codes, the format is not even easy to recognise. At least with, for example, car number plates, we tend to see the patterns, such as AB12CDE.

PoppyRose profile image
PoppyRose in reply to helvella

Please see 'nostoneunturned.'

PoppyRose profile image
PoppyRose in reply to helvella

Thank you for the information.

I understand what you have said and it is clear, and agrees with what I have been researching, it just seems to conflict with what my surgery are telling me. I feel like I've hit a wall.

Please see my reply to 'nostoneunturned' above.

xx

shaws profile image
shawsAdministrator

Your GP is another one who keeps his thyroid gland patients on a 'replacement dose' which they think is the correct way - keeping your TSH within range. He is very, very wrong as Dr Lowe has said that 'replacement' patients are apt to develop other more serious diseases and these are two excerpts:-

August 2, 2005

It is understandable that you’ve felt awful on T4-replacement. The published record now shows that in general, T4-replacement is not an effective approach to thyroid hormone therapy. I provide the evidence for this in my critique of recent T4-replacement studies, and in my criticism of Dr. Richard Guttler’s false beliefs about hypothyroidism.

As in your case, T4-replacement leaves many patients suffering and burdened with excess weight they can’t lose. What’s more, it increases their risk of several potentially-fatal diseases and increases their use of drugs. Because of this, in my opinion, you should resolutely refuse to allow T4-replacement to keep you feeling poorly. No hypothyroid patient should settle for that.

Our research and clinical experience show that products containing combined T4 and T3 or T3 alone virtually always work better than T4-replacement. Because of that, I encourage you to insist on using one of these products.

It is always best for a patient to work with a cooperative doctor who is knowledgeable about thyroid hormone therapies other than T4-replacement.

and

November 25, 2002

Question: May I first say what a blessing your site is. It's an oasis of sense in a desert of disillusion. Thank you.

After showing classic hypothyroid symptoms for over ten years, my general practitioner has finally decided that I’m borderline hypothyroid. Initially, she allowed me to take 50 mcg of thyroxine (T4) daily. Then, at my insistence, she allowed me to go up to 75 mcg. On 50 mcg, I still felt dreadful. On 75 mcg, I’m more alive but still not feeling really good. I was diagnosed at the end of July, so perhaps I'm expecting too much too soon.

web.archive.org/web/2010122...

PoppyRose profile image
PoppyRose in reply to shaws

Thanks for the link - very interesting reading - and it just makes me more frustrated! I will make a note for my next visit.

Please also see my reply to 'nostoneunturned' above.

xx

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