• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Struggling to understand hypothyroidism- anybody help me out?

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
MeanMom

MeanMom

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
...please?

K was diagnosed with underactive thyroid(here after known as UT) at her first annual review and she has just had her second annual review. Thought it was about time I found out more about it:confused:

I know some people on here also have this and I had noticed mention of T3 and T4 so I have just looked at K's test results -I know I should have before but it has been the least of my worries TBH. But was sitting pondering and a light bulb came on - depression is symptom of UT - Dr says meds are correct, but are they?

So been googling as you do and now am very confused so came to ask kind people on here

Latest test done end Nov '11

FT4 = 14. TSH = 3.6. (FT3 not done/not given)?

Am I right that the TSH is a bit high still? Can't work out what level the FT4 should be? Should I be asking for a FT3? What have others done about this please?

(BTW - although she is a child she is size of small adult 5ft,8+ stone so I assume adult figures apply - can't find any for kids anyway:confused:)

Just trying to get my head round this before next lot of results later this week - if I need to ask them to increase meds?

Thanks
 
Last edited:
Hi meanmom.

Afraid I know not a jot about HT but I would suggest finding any info that causes you concern, print it out and take it, with some notes to your GP and suggest that they up the meds.

That way they can either agree or defend their decision and you can then use the info to argue against them or at least understand why they don't want to.🙂

Meantime, I hope someone else can actually offer an opinion of some use.🙄

Rob
 
Thanks Rob

Afraid GP is one of these:D
chocolate-teapot-black-on-grey-lrg-frnt_design.png


K got her Dx from diabetes clinic so they deal with it - she had blood tests last week so trying to get my head round this before I find out results of it so I know whether I want them to up the dose. Will do what you suggest - but am hoping someone can help me work out what the numbers 'should' be:confused:
 
Could you get a referral to an endocrinologist who could look after both the thyroid and the diabetes side of things, or does the endo that K sees already do that.
 
Hi, I almost didn't not read this as you asked about over-active thryoid (hyper) and I have an underactive thryroid (hypo) but think you actually mean the latter.

I just accepted the results given to me but thought one year that the annual blood tests would show my level of meds were not right and they would be adjusted. Amazed when they came back "normal" so carried on and struggled with some depression amongst other things. Following year again convinced the results would show something but again they were "normal". Other things going on, to be honest, thryoid was least of my problems but I read something in a magazine about a website. Will see if I can remember what it was called and post again in a short while.

There was a questionnaire on there and when I filled it in, it said there was a problem - which I knew really. Also said "normal" covers such a wide range that although you are at the top or bottom of that range and will be affected the result is still "normal". Thing to do in those instances is to ask for a trial period of your meds to be increased and go back for another blood test 3 months later. It is important not to take too much but it affects your life if you don't take enough. I printed out loads to prove my point, made an appointment, sat down with the gp, explained why I was there and pulled out all these papers for her to read through. Her response was "just tell me what you want" so I said I wanted the meds increased and she agreed. Felt tons better almost immediately, went back for blood test 3 months later and the result was still "normal". I stayed on that level for quite a long time and it is with my weight loss and tons of pressure coming off me that I have been able to reduce the level. I needed that crutch of an increased level at that time.

Check out different things - I tend to stay away from American sites as they can be way over the top - and go armed with information. Stress you are OK with the increased blood test because you are trying to prevent problems, not cause any more.

I am an adult, mid 40s when the thyroid problem was diagnosed which was just before entering into the menopause nightmare. I can't say the best thing for a child.

Will go now and try and remember that website, something like ThyroidUK or similar and I know the site has been revamped since I first found it 10-12 years ago.

Be right back.
 
www.thyroiduk.org.uk

Has got slicker and lost something in the process but plenty of information on there.
 
Thanks Marg - yes your story sounds like quite a few peoples experience, from my research. Thanks for the link - perhaps I am being dim, but I still can't understand what 'numbers' are acceptable, and which aren't?

(can admin change title for me please ?)😱
 
There are people that don't feel right until their TSH is around 1.0.

The trouble is NOBODY KNOWS. And Endo told me he wished everyone would have all their levels checked when they were eg 18 and bouncing with health. Then when they were eg 40 and struggling and they had em all checked agin, they'd instantly know the problem and the dosage! Instead of which he freely and publicly admitted, it's just an educated guess.

But an Endo is a far better guesser than a GP ......
 
Hi MM

When my son had his annual review in December, the follow-up letter we received had all his results on and the 'normal' ranges for results. I will dig it out later and see if there are any thyroid levels mentioned on there. I think it is one of the normal annual checks isn't it? If so it will be on there. Mind you, he is 6'2" and solid, so how relevant to your daughter those results will be, I don't know. I never know whether results for various blood tests would be the same for adults and children, but I will report back later what I find on there.

It's bad enough having D to contend with, but another condition on top really does seem unfair doesn't it. And the teenage years are challenging enough. I do hope you get some answers soon.

Tina
 
I find some good information on www.patient.co.uk Type in the condition you are looking for and see what come up.

Sorry I can't be of more help.
 
Last edited:
Sorry, you're having trouble finding out if K is not getting the right amount of thyroxine.
I'm obviously not very clued up about hypothyroidism😱
I didn't know it could cause depression!!!!

I hope you get to the bottom of it all soon.🙂
 
Monica said:
Sorry, you're having trouble finding out if K is not getting the right amount of thyroxine.
I'm obviously not very clued up about hypothyroidism😱
I didn't know it could cause depression!!!!

I hope you get to the bottom of it all soon.🙂
Click to expand...

Monica, it is a horrible condition until you get the levels right. No energy, no breath, everything is a struggle, depression probably because you are aware of all the things you can no longer do.

Get the levels right, and the world is A-OK once again!!

GPs will be cautious increasing the levels because some people try and use thyroxin as a weight loss aid - it speeds up your metabolism. Plus, if you are on too high a level then your thyroid will not even try to do the job itself. Balancing act.
 
MargB said:
Monica, it is a horrible condition until you get the levels right. No energy, no breath, everything is a struggle, depression probably because you are aware of all the things you can no longer do.

Get the levels right, and the world is A-OK once again!!

GPs will be cautious increasing the levels because some people try and use thyroxin as a weight loss aid - it speeds up your metabolism. Plus, if you are on too high a level then your thyroid will not even try to do the job itself. Balancing act.
Click to expand...

LOL Marg 😉. I do have hypothyroidism myself. But I still didn't know about the depression bit. I just felt tired and cold all the time. Every now and then I don't feel that I'm at the right dosage, but the tests come back "normal". I don't get told the proper result. So I guess unless I go and discuss it with the GP.....

I know too high a dose can give you heart palpitations too.
 
Sorry MM, I haven't yet been able to locate the letter from the end of last year with all the 'normal' levels on. All I can tell you at the moment is that my son's TSH level on diagnosis was 2.98 and considered normal. I think the letter with all the values on must be amongst a pile of junk in my bedroom awaiting sorting. I have to pop out now but will have a look later and report back any findings.

Tina
 
MeanMom said:
...please?

K was diagnosed with underactive thyroid(here after known as UT) at her first annual review and she has just had her second annual review. Thought it was about time I found out more about it:confused:

I know some people on here also have this and I had noticed mention of T3 and T4 so I have just looked at K's test results -I know I should have before but it has been the least of my worries TBH. But was sitting pondering and a light bulb came on - depression is symptom of UT - Dr says meds are correct, but are they?

So been googling as you do and now am very confused so came to ask kind people on here

Latest test done end Nov '11

FT4 = 14. TSH = 3.6. (FT3 not done/not given)?

Am I right that the TSH is a bit high still? Can't work out what level the FT4 should be? Should I be asking for a FT3? What have others done about this please?

(BTW - although she is a child she is size of small adult 5ft,8+ stone so I assume adult figures apply - can't find any for kids anyway:confused:)

Just trying to get my head round this before next lot of results later this week - if I need to ask them to increase meds?

Thanks
Click to expand...

Hi MM

Have just found the letter. My son had his annual review in Dec 11. His FreeT4 level was 17, normal range was quoted as 9.8 - 23.1, and TSH he had 2.31, normal range quoted as 0.35 - 5.5.

This was for a 16 year old, but 6'2" and hefty.

Don't know if this is of any use to you at all, but going on those figures your daugters levels look fine. Not that I know anything of course!

Is it worth querying it if you are really not sure?

Tina
 
Thank you Tina

Just got K's results from last week

FT4 16. TSH 4.8

DSN bit puzzled why I asked numbers as she just told me - 'thyroid fine' to begin with. She said FT4 should be 10-22. Didn't tell me what TSH should be (I didn't ask either - her voice was sounding rather impatient by this time)

Both those numbers are up on last test - FT4 being up is a good thing (I think) but TSH creeping up too is (I assume) not so good.:confused:

I have read somewhere that TSH should be around 3 if you are being treated for underactive thyroid - I don't like K's being 4.8 even if DSN says 'fine' - perhaps she forgot K is being treated.?

How do I find out if K's D paediatrician is also an endo - watsit? Or are they all? Anyone know?
 
All D consulatnts are Endo's, D is just a specialism of that specialism !
 
Thank you TW - I thought so but some people on 'another forum' didn't seem to think so.

This is always the best place to find out stuff, thanks peeps.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top