Help with results please?

Hi. I feel like I'm going mad. I was diagnosed with chronic fatigue syndrome 6 years ago. Not until recently I asked for thyroid tests last November my tsh was 1.5 now it's 1.98 and my t4 was 19.1 now it's 12.2 and my t3 is at 1.8 wasn't tested last year. I feel dreadful. Dr said "normal " although even low end on their scale but tsh is midle scale almost and I read most people feel better with a tsh of 1. Amy advice .

38 Replies

oldestnewest
  • Hi Veggielove have you tested your adrenal function yet?

  • Hiya well the Dr said my before 9am cortisol test I'd showing normal high end so I was 508 the upper limit is 600 or something pituitary function 191 but as long as below 630 it's fine even though 2 years ago I didn't produce any breast milk for my baby

  • Do you have the reference intervals for these results (usually put in brackets), if not ask your doctor's surgery for them. The T3 figure of 1.8 looks very low but without the reference interval we can't be sure.

  • Hi sorry I put wrong info up reference range for tsh is 0.35-5 and for t4 it's 9 - 21 and t3 it's 0.9 - 2.5

  • T3 is low, if your cortisol levels are still high, although within range, that could be indicative of poor T4 T3 conversion, which seems to be common.

  • What should I look at doing? I feel really lost and alone nobody can take me serious

  • You have support here veggielove and this is you now beginning to learn to look after yourself. First of all, this is an explanation of the blood tests - not the one the medical people use:

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

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

    Many people remain undiagnosed because the doctors don't know any clinical symptoms it would appear. This link is by a doctor who was a virologist who was asked to look at people who had 'mysterious diseases' by specialists who hadn't a clue what their ailment was:-

    worldthyroidregister.com/Go...

    CFS, Fibro, ME appeared to have been 'named' about 15 years after the introduction of the blood tests and levothyroxine. Namely that we cannot be diagnosed nowadays unless our TSH is in a certain range. Those doctors who trained in the era of Dr Skinner all diagnosed and treated patients by clinical symptoms alone. Nowadays it's only where the TSH lands.

    Unfortunately for us Dr Skinner died two years ago. Your T4 has dropped since your last test as has your T3. If you don't have sufficient T4 it cannot convert to T3 and it is T3 which is the active hormone which is required in our receptor cells.

    You will see from the interpretation of the Blood Tests' link above that you most probably are hypothyroid. Tick these symptoms on the list:-

    thyroiduk.org.uk/tuk/diagno...

    thyroiduk.org.uk/tuk/about_...

    "I am not medically qualified in any way. I am qualified through my own personal experience with hypothyroidism and the statutory treatment regime of the BTA and their guidelines which didn't make me well. - in fact I had even more symptoms and pain but finally recovering my health with the help/advice of Thyroiduk.org.uk. and alternative hormone to levothyroxine and comment is not given in my capacity as an Admin of Thyroid UK or endorsed by TUK. Information on the forum is not intended to be a substitute for medical guidance from your own doctor. - shaws"

  • Wow thank you so much for all that info everyone. It's like trying to piece things together to try and do ... something ! Lol 6 years of my life spent really feeling ill. This is the beginning your right. Thank you

  • Veggielove Shaws giving you sound advice, I'm qualified in giving advice, however I share my own experiences on here. Look at the links Shaws has posted, and look to the adrenal panel tests. If you are going to test for your adrenals, look for cortisol and Dhea. The test is a saliva test, you do over a 24 hour period.

    If your cortisol levels are really high first thing, then that could be causing some of the issues of tiredness.

  • Thank you For that I will look into that test privately then. The dr does not have a clue at all about why my health is this way at 1st they diagnosed "general malaise " then after that cfs and left me to it

  • Great stuff, the test is available through Thyroid Uk, they can organise it for you. Good luck and keep me posted

  • Cheers I will do that x

  • From now on when you have a blood test for your thyroid gland, the appointment must be the earliest possible and fast (you can drink water). You must leave about 24 hours between your last dose of thyroid hormones and the test and take it afterwards. This helps to keep the TSH higher as it varies throughout the day (I wonder if your GP knows this). Always ask for a print-out of your blood test results for your own records and you can post if you have a query.

    Ask your GP to test vitamin B12, Vit D, iron, ferritin and folate at the same time because we are usually deficient and they can cause symptoms (pain etc). Unfortunately the UK is the worst possible place to be diagnosed as most countries prescribe around 5. UK insists on 10 which is barbaric.

    When you post at the very bottom of the page there is 'everyone' (automatically chosen) and 'community' and if you don't tick community your question will go onto the worldwideweb and there's no way you can change or delete your question.

    If you want to change anything you press the down arrow to the right of 'Reply' and there's a selection choose which you want. If you want to edit or have made a mistake it can be rectified by 'edit'. Delete is self-explanatory and Report - if something you think is wrong and believe Healthunlocked action should be taken)

  • That's great thank you. I'm not actually on anything medication wise. X

  • When you are - even if not diagnosed yet - that advice will still stand.

  • Thank you for that information :-) I really very much appreciate it. So I can ask thyroid uk to help with any additional test I may want

  • Also to clarify does this mean my levels will continue to drop or tsh ruse until dr does something or? ?

  • The doctor will wait till it rises - some until it is 10. If you tick off your clinical symptoms plus the 'interpretation' you might be lucky and he might give you a prescription on a trial basis but I doubt it as he might be afraid of getting a reprimand.

    Ask for a Free T3 blood test. You will see an explanation of why this is a good test on the blood tests above. How do the doctors think we can function with a very low FT3. I just don't think they understand at all how we can feel.

  • I agree. I looked through the system with the Dr she said she wasn't sure she could order t3 test at all. There was 1 check box for t3 which she tested me for. Said if it's low they can't treat low t3 anyway! Lol was shocked at that statement something is defo off. Should I get free t3 private or ask dr if that is what she tested?

  • That isn't true as mine prescribes and I don't have, obviously, a low T3 now.

    There is a T3 blood test and a Free T3 and the FT3 is the main one to get as it tells the doctor how much is circulating:-

    FT3 = FREE T3

    T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

    The approx. reference range for Free T3 is 4 to 8.3

    We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340. (Click here for this article).

    With all of these tests, your results could be anywhere within the range and you would be classed as "normal". If you are at the very edge of the range, either at the bottom or at the top, you could be classed as "borderline". Neither you nor your doctor truly knows what your normal is, if you did not have a blood test done before you became ill. There are also particular reasons why the blood tests remain in the normal range. If you are not converting from T4 to T3 or if your cells are not taking up the T3 normally, your T4 levels and your TSH levels will still show as normal.

    The Broda Barnes Foundation tell us "Dr Barnes found that the primary reason for the inaccuracy of the blood tests for thyroid function is that the thyroid hormones are not utilized in the blood, but are utilized intracellularly. Therefore a patient can have enough thyroid hormones circulating in the blood to give a "normal" reading, but if the hormones are not getting into the cells, the patient will be hypothyroid.

    Also, there is a problem of low blood volume in hypothyroid patients. This means that any blood test value will appear higher than it actually is because the patient has a lower than normal blood volume. In many patients with "normal" or "high" thyroid blood levels, but many clinical symptoms, the patient's blood levels actually drop lower once the patient is given thyroid hormones simply because their blood volume increases.

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

    Too much info today so leave this till tomorrow.

  • Thanks for all that. Yeah I knew it was weird I kid u not she said I would probably need to go private for t3 meds if it was low . Crazy . I will find out which it was x

  • I have more info if its relevant. It was total t3 they tested. And I got thyroid test in 2009 so they gave me those results which are tsh of 3.03 and t4 of 10.7

  • Thats the year I got cfs diagnosis

  • Sorry I forgot mention I hd pcos before but was told my cysts had gone at a pregnancy scan as I had a no wheat no sugar vegan diet before to address that. My BP swings up

  • If you want or can afford a private test:-

    bluehorizonmedicals.co.uk/e...

    I think you get a discount if you quote Thyroiduk but maybe not if this one is reduced already.

  • Thank u. I can't believe 6 years ago I was that bad and didn't know anything about health so didn't even think thyroid

  • Hiya wonder if u can help. I called dr and the told me this info with a conclusion of no help and all normal. So with that thyroid info and this

    Testosterone is 0.8 (<3.2)

    Sex hormones BG 16 (20- 55) nobody can tell me what that actually means including my dr

    Free androgen index is 5.0 ( < 7.0)

    And that they can't test free t3 as it's bit going to show us anything . I mean this was a dr saying this she said it's cfs and she knows it's frustrating for me

  • If you copy and paste your blood results onto a new post someone will reply. I am not good analysing blood tests.

    Your doctor is wrong about T3 and Free T3 blood tests but I think it is their guidelines. Shows you why some of us don't get better because of ignorance.

    healthline.com/health/t3#Te...

  • I know it brings a tear to my eye the rediculoseness of it all. Thank you x

  • "last November my tsh was 1.5 now it's 1.98 and my t4 was 19.1 now it's 12.2 and my t3 is at 1.8 wasn't tested last year" "reference range for tsh is 0.35-5 and for t4 it's 9 - 21 and t3 it's 0.9 - 2.5"

    Although your T4 is still in the reference interval at 12.2 it is about 40% lower than it was in November, so that is relevant. The T3 figure looks OK assuming it represents 'free T3' (the 0.9 - 2.5 interval is unusual). It might be worthwhile your doctor doing a more comprehensive pituitary blood test as your TSH hasn't risen in response to your drop in fT4 and the fact you didn't lactate after your pregnancy. I assume you do not have any other illness (other than CFS etc.) as sometimes other illnesses can upset thyroid hormone action.

  • As far as I know it's just cfs so I just went with that for 6 difficult years lol. What would that test be called? The drs here really are quite fast to get rid of me and said my pituitary is 191 but must be under 630 and wouldn't mention it again. The dr even wasn't sure the nhs could accept her asking to test me t3 and said if it was low I would need to go private for any medicat ion! Felt dodgy after that lol

  • Also my blood pressure does swing high end and I did have pcos diagnosis sorry but I forgot about that as I had gotten rid of my cysts before I had the wee one

  • I have more info if its relevant. It was total t3 they tested. And I got thyroid test in 2009 so they gave me those results which are tsh of 3.03 and t4 of 10.7

  • total T3 is useless for this purpose, it's the free fraction that matters. Given your presentation it would seem reasonable if they gave you a three month trial of 50 mcg levothyroxine to see how you get on.

  • I have learnt so much it's unbelievable I'm going to get private free t3 asap now . Someone was saying to me that last year (1 year post baby ) was getting somewhere as pregnancy regulates it but then now 2 years post baby I'm getting higher tsh and lower t4 again

  • Thanks I will get the ft3 test and see where I am . I juat hate fighting drs and things so much stress lol

  • Hi

    I feel the same as you veggielove..was diagnosed with cfs/fibromialgia in 2006..after goin to several cfs cli.ics I learned to deal with the he illness..then about 2 years ago I started going threw the menopause..I had the usual symptoms..flushing bit warm fast heartbeat small swears nothing to bad could cope with it..then about 4_5months later I started having pain on swollowing then the profuse sweats started I mean I sweated constantly..shaking tremors.eminence pain in every muscle and joint in my body..iv gone partly deaf in my left ear with earache..I was diagnosed in 2004 with overactive thiyroid so I knew the symptoms..went to docs done bloods came back overactive..doc said I had to wait six weeks for another blood test to see if I return to normal levels..I did and that was that..doc just left me..im still having all the symptoms and have been bugging my doc for help for over 15 months..its same old story the menupause..but my symptoms are of overactivity..or adreanal..I have had him do several blood tests all have come back normal...everything hyperthyroidism..adrenal..antibodys.. all normal..but like iv told the doc iv got server symptoms iI have no life now iI cant go out for the severity of my symptoms..sweating shaking tremors..bad body pain..its hell..and iv just been back to docs today to see if their is anything they can do for me..iv been on every tablet but only for menupause..I was not pescribed any meds when I went overactive..doc was ignorant she said what do u want me to do for you you,v had all the tests and their all normal..so I told her about this site and thiyroid tests being the golden rule for docs..said im having bad symptoms no life I got upset no comfort from her not even a hanky to wipe my eyes..she said really theirs not much we can do for you..:-(..but if you want I can refer you back to the endo..so having no other choice I had to agree with that..I mentioned the pain..and she just swept it under the carpet saying ho we can sort that out at another date..im in pain NOW!!!..not much help their..I asked for my thiyroid results to post on here..never got them.she sent a strong siganal I was waisting her time..dont hink she has any idea how this is affecting my life..:-(:-( sorry for the long letter

    Karen

  • So sorry u r suffering I hope that u can get some relief from all this xx

You may also like...