JO

[joanSOWTON]

My blood test for TSH has come back as .92 after my doctor lowering my thyroxin from 100mcg to 75 mcg is this a normal range as I am exhausted and have itchy eyes and have put on 6lbs ???? help please

[rosetrees]

Your TSH tells you very little on its own. You need to have your FT4 and FT3 measured too. TSH is produced by the pituitary - if the pituitary isn't working effectively your TSH will remain too low. It is lack of T3 that makes you hypo. You need both fT4 and FT3 tested to know if you are simply undermedicated (FT4 low, FT3 low) or if you have a conversion problem (FT4 high, FT3 low).

Have you had your iron, folate, ferritin, B12 and D levels measured?

[joanSOWTON in reply to rosetrees]

I have had only a TSH blood test according to the receptionist at my doctors surgery !! she said the doctor said this was fine ?? I am not so sure, I did ask about t3 and t4 but she said there was only one reading on the blood test .

[joanSOWTON in reply to rosetrees]

also is this a normal reading for TSH ,92 or is it to high as I am not at all sure what it should be r how to calculate, thankyou

[rosetrees in reply to joanSOWTON]

There's no way of knowing if your TSH is "fine" or "normal" without knowing what your FT3 and FT4 are. Take this opportunity to always ask for print outs of all tests, with ranges.

As I said before, TSH on its own tells you nothing.

A quick lesson in thyroid hormones (very simplified). Your pituitary produces TSH (thyroid stimulating hormone). This does what it says on the tine - it stimulates your thyroid to produce 5 things, including T4 and T3.

T4 is an inactive hormone which is converted by the body into T3. T3 is the active hormone which is used by every cell in the body.

It is lack of T3 that makes you hypo and too much t3 that makes you hyper. This is why it is essential to measure FT3, that is the only reliable indicator of whether or not you are hypo.

You need to know FT4 also as you need to know if you are converting effectively from T4 to T3. If both are low in range, then you need more thyroxine (T4). If FT4 is high in range but FT3 low, then you are not converting properly and might benefit from the addition of some T3.

TSH is only useful once a patient has been diagnose as hypo. If it is high, then your pituitary is working properly and you have primary hypothyroidism.

If you are hypo (FT3 low) and TSH is low then your hypothyroidism is secondary (or tertiary) - you have an under performing pituitary or hypothalamus.

You have my permission to print that out and take it to your doctor.

[joanSOWTON in reply to rosetrees]

I was diagnosed with hypothyroid some years ago when I was put on a low dose of thyroxin and built up after three months to 200mcg, since then I have been fine sadly I moved house and have had two new doctors, since within the last two years they have reduced my thyroxin to 125mcg and now in the past three months to 75mcg and now i am suffering putting on a great deal of weight again, I have been on a calorie controlled diet and my in take of calories 1200 per day allowed me to lose two pounds a week over the last eighteen months I have lost two stone whilst on 100mcg. then since 75mcg I have had to reduce my calorie itake to 1000 , alas still is not working as I have put on 6lbs not good , I feel tired and listless and now this condition with my eyes is very frustrating, I have now got a copy of the print out it says serum TSH LEVELS (FA7308) and it says satisfactory 0.92 mU/L NO ACTION, It then goes onto say, British thyroid ass., guidlines 2006 if TSH 5 -10 mul t4 consider requesting thyroid peroxidase antibodies. if any antibody concetration is high , repeat TSH yearly , if TSH > 10 Mu/l T4 supplementation should be commenced , at a loss Im afraid. thankyou for you allowing me to use the post, its great to know someone understands what is going on.

[rosetrees in reply to joanSOWTON]

Just insist on having your FT3 tested. Stand your ground. It's your health and you contribute to the NHS. You are entitled to proper testing if it is available on the NHS, which FT3 is.

I think it's time to take control of your own destiny. As far as I'm concerned the only use for my GP is to write any prescriptions he's willing to write. End of.

While you are asking for your FT3 (FT4) to be measured, ask for Vit D, B12, iron, folate, ferritin, kidney function and thyroid antibodies. If he tries to refuse, just insist. Is there someone you can take with you to help you stand your ground?

Explain to him that if you have the tests done and get appropriate treatment you will take up less time in his surgery.

[joanSOWTON in reply to rosetrees]

No I have only has TSH. NO OTHER TESTS.

[Clutter]

Joan, TSH 0.92 is about right for most people but some need it lower or even suppressed to feel well. As you are not feeling well your GP should request a free T4 test because low FT4 means you will struggle to convert sufficient T3, the active hormone required.

Scroll down to Guidelines and Treatment Options to read Dr. A. Toft's comments thyroiduk.org.uk/tuk/about_...

Email [e-mail] if you want a copy of the article to show your GP.

You can order private FT4 and FT3 tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

[joanSOWTON in reply to Clutter]

Thanx Clutter that is so helpful, I am speaking with her on tuesday and shall download all of the above, also I am seeing a consultant about my eye problem at the clinic in Burton and will let them have this information also, maybe its because I am 65 and they do not bother after this age, its all a bit worrying. thanx again Jo.

[gabkad in reply to joanSOWTON]

If it makes you feel any better, if my TSH is 0.9 I am crawling on the surface of the planet like a semi-drowned earthworm. Since you were on a relatively high dose of T4 in the past, the pituitary may have decided to go on sabbatical. For people like us 0.9 is like other people's 5+.

I agree that anyone taking T4 needs to have fT4 and fT3 tested. This should be mandatory.

It appears, based on what you write, the 75 mcg dose is inadequate. I know it's hard to get into 'I'm a lion, hear me roar' mode when feeling like dogpoop, but you really need to give that doctor a good shake.

[joanSOWTON in reply to gabkad]

Thankyou, I am definately feeling a lot more positive and informed now ,my next visit to the doctor should be interesting to say the least, I will let you know next week. I am very grateful for all the good advice and will not be taking any negatives lightly, I also intend to ask for a second opinion if I am not satisfied with the answers.

[shaws Administrator]

Hi Joan

By now you will realise that doctors aren't always the best people to treat us. They have no knowledge of the function of thyroid hormones which we need to function properly.

Adjusting doses of medication only due to the TSH is wrong and can lead to more serious consequences. I would never at one time have imagined that doctors had no knowledge of hypo/hyper treatment except use the TSH. If we were overstimulated (too much) we would soon be very aware and reduce the dose ourselves. If hypo symptoms we should increase dose, gradually. This is an excerpt from a scientist who also treated patients and go to the date January 25, 2002 and there are other topics which may interest you at the top of the page. Unfortunately for us Dr Lowe died two years ago and he was a champion. In the USA the Endocrinologists and others get monetary rewards from Big Pharma (Pharmaceutical Companies) for using particular medications in particular generic levothyroxine and false statements are made about natural dessicated thyroid products which were all that was available before synthetic levo was developed :-

web.archive.org/web/2010103...

[joanSOWTON in reply to shaws]

Thankyou are will be armed with a deal more knowledge when I go for my next appointment, hopefully I will be taken seriously this time.

[shaws Administrator in reply to joanSOWTON]

The problem is GPs like to stick to the guidelines and may take their line from your blood tests alone.

Next time he says you are in the normal range, ask him what symptoms are detailed on the blood test form. He may be a bit surprised but say that only states the reference range of my bloods but it doesn't state my clinical symptoms and the purpose of thyroid hormone replacement is to eradicate all symptoms not just for the TSH to be within a 'range'.

[joanSOWTON in reply to shaws]

Now thats such a brilliant Idea, I will definately do that thankyou so much .

[eeng]

If all else fails, Thyroxine is very cheap to buy online. I went to Turkey on holiday and bought about 100 of the 25mcg tablets for just over a pound. No prescription, no questions. It sounds as though you need the extra 25mcg just to keep going. I take a little bit more than my doctor will prescribe.

[joanSOWTON in reply to eeng]

I will do that If I can get hold of the 25mcg ones , I will wait until after my blood test thats if I get one from the dr. thankyou

[joanSOWTON in reply to eeng]

Just ordered some on line thanks for that , I shall getmy own blood tested from now on ,at least I shall have a proper blood test done and be far more aware now, doctors are very limited in there knowledge of thyroid, its too in depth for them to be bothered I feel.