Cant get a diagnosis!!!! : Hello everyone I'm new... - Thyroid UK

Thyroid UK

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Cant get a diagnosis!!!!

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Hello everyone I'm new. I'm a 39yr old girl. Well, after 3 yrs of feeling incredibly ill & my weight on full throttle to blowing up 2st in a 19months whilst healthy eating/exercise. all my symptoms pointing in the direction of hypothyroidism I've had 2 blood test. My first in DEC 17 results TSH - 1.96 , (Drs range 0.35 - 5.50)

My FT4 was 10.1 (Drs range 7.00 - 17.0p)

Had more tests in Dec 18 as was feeling worse.

Results TSH - 1.01 (Drs range 0.35 - 5.50 )

FT4 - 11.3 (Drs range 7.00 - 17.0 )

Now I've been on the British Thyroid foundation and their ranges were

TSH - 0.4 - 4.0

FT4 - 9.0 - 25

I'm really struggling to get my dr to even give me a trail as I'm feeling awful and my latest symptom is awful sickening pain in lower legs. I'm really alone with all this. I'd be so so grateful for any advice.

Many thanks

Cez

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27 Replies

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greygoose6 years ago

It's not your doctor's ranges, it's the ranges of the machine used to do the test. Ranges vary from lab to lab, according to their machine, and population averages, so you cannot use any other range than one used by the lab where your test was done.

Admittedly, that TSH range is rather high. But, your TSH result is unequivocally euthyroid. And that second FT4 shows no sign for concern. However, you also need your FT3, nutrients and antibodies tested, to show the full picture. There's no way any doctor would consider a trial with those results that you have, I'm afraid.

6 years ago

Hello. Thanks for your reply. I thought my TSH was very low at 1.01? and with my FT4 in the lower end 11.3 and all my symptoms put together I was hoping it would warrant to me have a trail of Thyroxine? It says on the British Thyroid foundation site.

Was really hoping Monday morning at the G.Ps was gona be a glimmer of hope!

humanbean• in reply to6 years ago

I thought my TSH was very low at 1.01?

People who are hypothyroid i.e. have an underactive thyroid usually have :

High TSH

Low Free T4

Low Free T3

People who are hyperthyroid i.e. have an over active thyroid usually have :

Low TSH

High Free T4

High Free T3

There are exceptions to what I've written above, but to identify the exceptions you need more testing.

kresserinstitute.com/why-yo...

pathology.leedsth.nhs.uk/pa...

If you haven't got an identifiable thyroid problem I would suggest looking into your levels of various nutrients. Being low in range or deficient in many minerals and vitamins can make you feel awful.

Another common problem - not eating enough can make people put on weight - the body goes into starvation mode and hangs on to every scrap of fat it can. Low-fat diets will make it hard to lose weight too and will also deplete energy.

greygoose• in reply to6 years ago

Just seen your reply by chance. On this forum, you have to click on the 'Reply' button under the comment you're replying to, so that the person will be notified.

Your TSH is not very low. The TSH of a healthy person, without any thyroid problems, is between 0.85 and 1.25. It is the ranges that are very wrong. The cut-off point should be 3, because at that point you are hypo. Over 2 indicates that your thyroid is beginning to struggle. And, anyway, as humanbean explains, if you were hypo, you would have a high TSH, not a low one.

Also, despite the stupid ranges, under the NHS, doctors like the TSH to go up to 10 before they are willing to diagnose.

And, your FT4 isn't that low. It's about right for a euthyroid person. As for symptoms, doctors know nothing about them. It's rare to get a diagnosis on the basis of symptoms. I'm afraid your doctor is just going to dismiss your results as 'normal'.

Gryphon1• in reply togreygoose6 years ago

I think you may have answered my problem also thank you. I have all symptoms but not correct figures as you have explained. I have been trying to see if there is any point getting more tests private which I cant really afford, but I think it could be a waste of money by what you have just posted as I am 'normal' with everything unless antibodies and FT3 which I havent had tested make a difference to results?

Thanks

greygoose• in reply toGryphon16 years ago

Knowing that FT3 is low and/or antibodies are high would make a difference to you, in that you know whether to keep fighting for a hypo diagnosis; but it's doubtful if they would make a difference to a doctor, as doctors are very much ignorant about these things. That's why they don't test for them.

Gryphon1• in reply togreygoose6 years ago

Thank you

greygoose• in reply toGryphon16 years ago

You're welcome.

SeasideSusieRemembering6 years ago

Cezza7

The British Thyroid Foundation article says

"Typical reference ranges for normal thyroid"

and

"These ranges are only a guide and will vary according to laboratory."

It doesn't matter about any other ranges you see, they are irrelevant, the only range that can be used with your results is the range from the lab that does your test.

However, for a full picture it's best to have the following tested:

TSH

FT4

FT3

Thyroid antibodies - TPO and TG

Also, nutrient deficiencies can produce symptoms similar to symptoms of hypothyroidism, so it's worth testing:

Vit D

B12

Folate

Ferritin

You could ask your GP for all of these tests but they won't all be done, particularly FT3 and thyroid antibodies. You could do what hundreds of us here do and that is private tests with one of our recommended labs who do home fingerprick tests, with the option of venous blood draw at extra cost.

If you would like details of these tests, please ask

• in reply toSeasideSusie6 years ago

Yes I've seen the link and the prices are really good so will be sure to get that done for piece of mind

Thank you for your response

SeasideSusieRemembering• in reply to6 years ago

If you use Medichecks then code THYROIDUK gives 10% discount on tests not on special offer.

Gryphon1• in reply toSeasideSusie6 years ago

If I have these test will a GP do anything, I am in same position and have had tests by GP but I am almost bedbound all day now, but cant really afford tests and dont want to waste money if GP ignores them. Thank you.

SeasideSusieRemembering• in reply toGryphon16 years ago

If I have these test will a GP do anything,

No guarantee, some GPs accept them, some don't. What you can do though, if GP dismisses them and there is an obvious problem which the GP hasn't tested for before, is use the results as an invitation for the GP to repeat the tests on the NHS.

Gryphon1• in reply toSeasideSusie6 years ago

Thank you. Dont really understand sorry, why would they repeat tests already done on NHS if they dismiss the private results.

Can FT3 and antibodies be done on NHS? As these are only tests not already done by GP. Sorry if I am confused very tired and ill and desperate for help but extremely lacking in funds, live alone and agoraphobic so have problems with GP already. Thanks again.

SeasideSusieRemembering• in reply toGryphon16 years ago

I'm not quite sure what you mean.

why would they repeat tests already done on NHS if they dismiss the private results.

Do you mean GP repeating tests done already by the NHS?

Or do you mean GP repeating the tests already done privately?

You've come in on someone else's thread where we were talking about getting private tests done if the GP wont do them all on the NHS. I thought you were asking about whether your GP would accept private test results, some of which aren't done at GP level.

FT3 and antibody tests can be done on the NHS. However, a GP normally can't get FT3 test done unless there is something seriously wrong with the TSH result, it's the lab that makes the decision to do that test even when requested.

A GP may be able to get TPO antibodies tested, but it's only done if there is thought to be a need. TG antibodies tend to only be done in secondary care, eg when an endocrinologist requests it.

A GP can get those nutrients that I listed tested, some will do them, some wont.

Gryphon1• in reply toSeasideSusie6 years ago

Sorry I was coming in on thread because it sounded similar to my situation and I have had certain test done by GP and wanted to know (as I can not really afford private test) if it was worthwhile getting further test if a GP then dismissed results. If they dismissed them why would they repeat private tests results on NHS is what I think I meant !?

I am so very confused and mentally foggy so sorry if I read your reply wrong or replied incorrect.

I am going around in circles with GP and I am worried about costs, sorry I have had all test available re T4 TSH and nutrients by my GP but not FT3 or antibodies if these came back abnormal would GP get me tested on NHS and treat in anyway? Sorry again if confusing just need help understanding and getting right help. Thank you.

SeasideSusieRemembering• in reply toGryphon16 years ago

If they dismissed them why would they repeat private tests results on NHS is what I think I meant !?

Because some doctors simply wont accept private test results at all. They come up with all sorts of twaddle like they are not accurate, the testing companies are money making scams, etc. The companies that do these private tests are accredited labs, the same as the NHS use. So if a GP refuses to accept private tests because they think they can't possibly be accurate (or whatever) then ask them to do those same tests on the NHS to satisfy themselves they the results are then accurate.

Why not start a new thread, post all the test results you've got, include the reference ranges that are with your results (very important for interpreting your results as ranges vary from lab to lab). Members will then be able to comment and may be able to offer suggestions as to the way forward.

Gryphon1• in reply toSeasideSusie6 years ago

Thank you,I cant get results because of agoraphobia and live alone, I have asked several times for results but I have to go to GP surgery for full copies and cant get there. That is why I look for similar posts on here and for any advice for when I phone them re any blood tests needed as nurse has to come to me. Thank you for your help again.

SeasideSusieRemembering• in reply toGryphon16 years ago

Can someone go to the surgery for you? There are times when I've phoned and asked the surgery if someone else can pick up my results for me, I just tell them who it's going to be and they put my results in an envelope and hand it over to them, absolutely no problem. There really is nothing you can do to help yourself, or anyone here can do to help, without your results plus reference ranges.

Or maybe ask them to post them out to you.

Gryphon1• in reply toSeasideSusie6 years ago

Thank you I understand about results and ranges are needed to help me on here but I have no one to even go to GP for me and have asked them to post several times but to no avail and that is why i look on here for similar issues. I realise everyone is different and I am grateful for all information on here and people who help and reply as I feel helpless and very alone in this struggle but will keep asking GP for further test results and maybe post in future if I somehow get results and ranges. Thanks again sorry.

prussianblue6 years ago

You may have a thyroid problem or you may not, but you do have symptoms that need investigating. Self diagnosis is sometimes useful but it’s no substitute for a qualified medical opinion. I think it’d be worth making an appointment to see a GP to go through all your symptoms starting with the most troublesome. But don’t mention thyroid at all. And see what GP comes up with. (You can always go back for an appointment to suggest thyroid worries later!)

JennaShi• in reply toprussianblue6 years ago

I agree with Prussianblue.

Pawsedagain6 years ago

If you are taking Biotin it has an effect on thyroid blood test results.

waveylines6 years ago

Am sorry to read how poorly you are. You defintely should be going back to your GP who should be investigating further & wider than thyroid. Your results that you have had done to date whilst not complete indicate you are euthroid where your thyroid is concerned. However if you are bedbound a lot of the day clearly something isnt right. Please go back to your GP. In your shoes I would ask for a double appointment so your GP has more time to look and consider next steps including whom to refer to.

Bambamg6 years ago

Am on thyroxine since 1995. 175 mcg. Only recently discovered certain foods interfere with absortion. Calcium, vit D, asked doc. Told have after 12,00. As thy taken on waking. Might help you?

dovetail6 years ago

Hi there,

I noticed you said you have awful sickening pains in your lower legs, I also suffered with pains like that in my shin bones, I went to the GP who did some tests & I had a vitamin D deficiency. I was prescribed vitamin D tablets & after taking them for some time (sorry, I can’t remember exactly how long for) the pains disappeared. Obviously, that’s just my experience but I thought it might be helpful to you. I hope you get the help you need soon, good luck with it all 😊

helvella• in reply todovetail6 years ago

When you see a user name of Hidden, it means that the person is no longer a member of this forum.

We often close posts that were originated by people who have left - there is no point in wasting our time making replies. Occasionally, the thread might still be active and popular and will be left. More often, it is simply a case of none of the admins noticing!

I shall now be closing this post to replies.