Help please....

Hi I wonder if any lovely people could give me a way forward.

For a long time now I have been having 6monthly thyroid checks but only once has it come back outside of the gps ‘normal’ range. The problem is I am experiencing so many symptoms I feel I am possibly a person that requires a boost even if levels appear in range.

The gp only test TSH levels too.

My symptoms are currently extreme fatigue, weight gain, hair loss, low mood, memory loss, increase migraine etc

I have done a home TSH test (result in photo taken at 10 minutes as per instructions)

What’s people’s thoughts, experiences of what to do next as the symptoms are effecting my home/family/work life

Many thanks in advance

[SeasideSusie Remembering]

Hidden

I have no idea what that test is or what it is showing, but it's blood tests that you need, and not TSH on it's own as that can't diagnose every form of hypothyroidism:

TSH

FT4

FT3

Thyroid antibodies

Post any past results you have, including the reference ranges, for comment.

If GP can only do TSH, then why not get a private test done? If you are in the UK you can get a home fingerprick test (or venous blood draw at extra cost) and they are reasonably priced with Medichecks having special prices on a Thursday on some tests, and a 10% discount on any tests not on offer.

[Hidden in reply to SeasideSusie]

Thank you for your response.

Sorry I made a mistake. The gp does TSH and T4 testing but not anything else.

One gp I saw did look at my results combined with symptoms and put me on a trial low dose of thyroxine. This helped for a while but then seemed to decline again. When I went back it was a different gp who instead of trying to increase the dose just took me off them again.

I feel lately things are worsening.

The home test I did was just a TSH check but not sure if it’s given a positive result or not (line in ‘T’ area would be +ve) to require further investigation.

I feel at a loose end and fobbed off by gp who is going off standard recommended guidelines.

[bantam12 in reply to Hidden]

I can't see how that test tells you anything, are there instructions on how to read the result and what it means ? seems to be a waste of money unless it gives you an actual result in numbers and range.

[Hidden in reply to bantam12]

Positive result ie any sign of a line in the t area means that the TSH level is higher than the normal 5 reading. I’m aware it doesn’t check other factors. It was only a couple £ so not too bothered that way. Im interested though in how many have ‘normal’ level in this but are still having symptoms, is there an abnormality elsewhere etc?

[helvella in reply to Hidden]

My own TSH only just crept over the top of range (about 5.05 from memory).

It was symptoms that kept driving me to request tests over many months. And my TSH did rise - on a graph, a straight line going up.

[Hidden in reply to Hidden]

A TSH of 5 is NOT normal on any usual reference range, whatever the GP says!

That and the symptoms show you are definitely hypothyroid!

[Hidden in reply to Hidden]

"One gp I saw did look at my results combined with symptoms and put me on a trial low dose of thyroxine. This helped for a while but then seemed to decline again. When I went back it was a different gp who instead of trying to increase the dose just took me off them again."

The first GP seems to have had the right idea, the second one doesn't seem to have much of a clue about thyroid treatment. The symptoms you describe are classic hypothyroid symptoms. If you are hypothyroid you have to start with a low dose of thyroxine and gradually increase every 6-8 weeks until hopefully you feel better.

"This helped for a while but then seemed to decline again." This seems to be the usual pattern, certainly it was for me. With each increase I felt better after maybe a week or so, then after another couple of weeks there was a gradual decline.

It simply means that you haven't yet reached your optimum dose and it's almost time for another increase. The thyroid (which is already struggling if you are hypo) seems to get used to having outside help and may actually reduce its output. Some people even feel worse until their Levo supplement is high enough to overcome that suppression of the natural thyroid production.

However, until you have proper test results we can't really be sure what is going on.

[MotherMayfield in reply to SeasideSusie]

I have had symptoms for of hypo thyroidism for many years and GP only has TSH test results which spike around 9 then down to 3 then up again. He requested T3 and T 4 be measured in the last test but lab just did TSH. With his help I have just submitted a Medichecks full thyroid test with the practice nurse taking the Venus blood. Awaiting results but GP has said he will treat if the results confirm.

[Hidden in reply to MotherMayfield]

Even a TSH of 3 is still too high for most people with thyroid problems. Under 1 is best

[MotherMayfield in reply to Hidden]

I know ....but am lucky that my GP understands referenc epoints are not person orientated!

[Hidden in reply to Hidden]

Thank you for your messages. I have been reading info that thyroid uk are trying to get gps to prescribe at much lower levels of 3 even 2.5 but they seem stuck in their ways. I’m booked for a blood test on thurs but think they will have only requested TSH and poss T4. Can I request for a full check of everything? Or am I better splashing out on a medicheck one and comparing with gp results? I am going to book back with the gp that did actually listen and try for me. As much as I don’t want to take medication, the symptoms are seriously effecting my life

[helvella]

Some years ago, a company launched what they called a TSH test for use in doctors' offices, at vets and at home.

All it does is detect whether your TSH is under or over their top of range. From memory, I think they said that was something like 5.0.

I do NOT know if this is the test I read about.

The letters mean:

C = Control

T = Test

S = Sample

If there were ten people in a room and you knew one was an untreated hypothyroid person, then running this on all ten might identify that person.

As it is, though, you have no idea if your TSH is suppressed (effectively zero or very close) or 4.999. (I assume what it shows is described as negative?)

We all want a TSH test we can do at home. Quick. Simple. Cheap. Reliable. Accurate. Eventually we might see such a test but, sad to say, this isn't it.

SeasideSusie

[Hidden in reply to helvella]

Yes you are absolutely spot on. The test shows a line in the ‘T’ section if it reads above 5. It was a couple of £ so I thought I’d try it at home at a point when I was feeling at my worst.

I think I’ll try getting back to the gp who didn’t fob me off last time to see if I can get more answers

[bantam12 in reply to Hidden]

Why don't you order a Medichecks test then you will have some actual results to show your GP, he might ignore them but you can but try.

[Hidden in reply to bantam12]

I think I will thank you and as you say then I’ll have a more definitive answer to go back with

[Hidden in reply to Hidden]

A TSH above 5 is too high, and not normal, whatever the official ranges say! Above 2 may be still too high for many people.

[idaz]

Get the book dr Izabella Wentz. She gives advice how to feel better by taking supplements and following an adequate diet.

[Nijole]

If you still not feel good, go back to GP and ask to do more tests, they usually do...or do private normal tests, but again you need to see doctor than.

[Teapot1966]

Hi,

Sorry I’m not familiar with the test you’ve used there.

What I would say if the Gp has put you on a low dose then you started to feel better then it worsened it sounds like your body got used to that dose and needed a higher dose. If your Gp isn’t willing to do that go and find another and ask for a second opinion

I have an under-active thyroid and have had for 30 years now. Weight gains, tiredness, low moods etc are all classic symptoms of an under active thyroid! However I started on a low dose 50mcg per day and am now way up at 200mcg (so your body can needs to make 300mcg per day mine is verging on not working by 2/3). Over the years it’s got worse and worse.

I do think you need to go back - you’ll need to continue with the blood checks with a Gp who knows about your thyroid. Can’t you ask for someone who is a specialist in thyroid function if you are worried ?

[Hidden in reply to Teapot1966]

I don’t know if there is anyone at our surgery who specialises but I can ask certainly.

[Eddie83]

TSH is not a very good diagnostic tool, and it is virtually useless in deciding how to dose. If your doctor knew much of anything, he/she would give you a full panel TSH/FT3/FT4/rT3/TPOAb/TGAb. If the GP refuses to test anything but TSH, you aren't going to get well unless you can get access to a practitioner who actually has a clue about how to properly diagnose and treat.

[Benji76]

I wish you all the best. Please keep us updated. Lots of valuable advice here. You’re not in Sussex are you? I am having the same conversations with my docs. Even changed practice to get better advice. No joy. My tsh is over 5 and has been for two years. I feel horrific. My life has ground to a halt and I’m an emotional wreck. Really can’t understand their think8ng. Gp says they won’t treat until tsh is 10! God knows what state I’ll be in by then. Perhaps this is all b3cause of the cost of treatment....? If any of us find were all under the same surgeries, perhaps we could write a petition.

[Hidden in reply to Benji76]

Sadly no I’m in Co Durham. I’m equally at my wits end. More blood tests today but don’t think they’ve tested anything. They’ve said if these come back within ‘normal’ range then it’s not the cause of my symptoms and have to look at alternatives such as depression and consider cognitive behavioural therapy!!! They also say sleep apnoea could be a potential cause. Awaiting tests so will keep updated.

[Hidden]

Update..... so latest TSH and T4 within normal range. Seems that’s all they’ll test for. Any suggestions anyone?

[NWA6 in reply to Hidden]

Ask your GP for the actual numbers and ranges. ‘Normal’ is too broad a term and as individuals we need to know ‘OUR’ numbers.