Thyroid problems experiences

[ShinySylveon]

Already tried posting in general health but no response, so trying chat.

I have just had a thyroid function test as part of the over 40s health check (I'm 41). It has come back with a TSH of 13.0 and T4 10.2. This seems to be high for TSH but T4 in the normal range. Is this something that should be treated? I will be waiting for a couple of weeks to speak to a doctor about it so I am just interested in hearing other people's experiences.

I think different labs have different ranges. Does your results sheet tell you the normal range for the lab?

T4 sounds low to me (assuming similar range to my docs). Mine is 12 with high antibodies and they’re keeping an eye on me every three months.

Maybe google optimal levels as I think often there’s a difference between the levels which are acceptable and those which are optimal.

Nhs levels are quite a high threshold for treatment
that said mine were very high when first diagnosed except I had very few symptoms
treated but put on a conservative amount of thyroxine and it gets reviewed once a year
theres a good Reddit page for thyroid info

Not sure if this link will work - there’s a table on here. No idea how trustworthy it is though :-)

https://thyroidpharmacist.com/articles/what-to-do-if-your-tsh-is-normal-and-you-are-anything-but/

Fuck me 😵 how do you get out of bed in the morning?

id be on the floor with a TSH of 6 and have been

id get back to your gp pronto and get something sorted

possibly a decent dose of thyroxine

TSH over 4 is treatable and under 1 is treatable

It’ll help if you post the full results eg TSH 13.00 ( xxx-yyy) The figures in brackets show the range for the rest carried out and is essential info to gauge where you are in the range.
You’ll also get help and advice on HealthUnlocked. Join the thyroid forum fir advice.

With great difficulty 😂

I've just logged in to my results and looked again and a note has been added "consistent with hypothyroidism". So I guess it will get treated.

Range for TSH is 0.35 - 5.50 mU/L and (mine is 13). T4 range is 10.5 - 21.0 pmol/L (mine 10.8, got it wrong in OP).

Thanks for the links

@ShinySylveon the gp will most likely recheck it and if the tsh is still high they will start you on levothyroxine. They should also test you for autoantibodies: peroxidase antibodies and thyroglobulin antibodies.

Even with a normal T4 people are generally started on treatment when the TSH is over 10, usually they say if symptomatic, but symptoms are so vague I expect most people will have at least one.

It will take a few months to stabilise and they will be taking regular blood tests until they're sure you're on the correct dose. Treatment will be life long.

Thanks. I’ve just been reading about Hashimotos. Is that what the antibody tests are for? My doctor generally tests for as little as possible so I don’t have too much hope of them doing more than the minimum.

My DD has an autoimmune disease, I see that these can be connected.

@ShinySylveon there's often a family history. If you have one of the autoantibodies then it's hashimotos (autoimmune underactive thyroid), this is the most common cause of an underactive thyroid and the most common autoimmune disease in the world.

90% of people with hashimotos have the peroxidase autoantibody, 10% will be negative for peroxidase but positive for thyroglobulin autoantibody (note thyroglobulin antibodies are different to thyroglobulin).

This test from medichecks will test for everything you need:

medichecks.com/products/thyroid-function-antibodies-blood-test

Maybe easier to just get that done than arguing for it all with your GP.

@Gardenlady543 thanks. I'll ask about it but if the doctor resists, I'll pay for one! Is it important to know if it's autoimmune?

I was diagnosed a weird way
Was meant to go to dermatology but got sent to immunology in error. Immunology were apparently quiet and perked up when they found I have a rare blood disorder, so they did a load of tests. Which came back as anti thyroid antibiotics
TSH was about 7 and my GP said sub clinical and didn't treat, but my T4 dropped over the next few months to 10 and they gave me levo
I had to fight for it to be increased as they said my TSH was fine at 4. I said would it be an issue if it was lower, they said no, so I asked for my levo to be increased
Now on 75 of levo and TSH around 1.5

@ShinySylveon so it's very likely you have hashimotos which means you'll be on lifelong thyroid replacement once you start. There is a small chance of these results being because of a reversible cause, there is a condition called thyroiditis, the thyroid gland releases all the stored hormones so people have very high levels of hormones in their blood followed by low hormones, this is because it takes the thyroid gland a long time to build up the stores again. People may need some thyroid replacement for say a year and then won't need it again.

Since you will likely require lifelong replacement checking for the underlying cause before you start is sensible. This may not be the opinion of your doctor, but as a person with the condition I feel it's worth exploring. In my case my GP only checked for the most common autoantibody, which I didn't have. So it's only through medichecks that I found out I had the thyroglobulin antibody. So I would strongly recommend you tell your gp you want tests for both the peroxidase antibodies AND thyroglobulin antibodies.

Thanks, I will ask.

I guess this explains why I have gained so much weight in the last couple of years. I thought the tiredness was just because I was fat, maybe not.

Op my results are often similar to yours
my TSH has been over 10 but T4 is often in range

a gp once told me they don’t like to medicate for TSH unless its Over 6 or 7. I find that ridiculous! I have a friend in the US who takes thyroxine with a TSH of 3

I think the NHS threshold for thyroxine is quite high, I’m private and I’ve been prescribed thyroxine when my TSH level was 4 . I take 50g
but now I’m taking 50g daily and 75g once a week because two previous blood works showed a result of 3.40 it’s not too high but even my periods were affected , lots of spotting in between periods, I’m now back to 1.80 and all is back to normal .

I missed these responses yesterday. Thanks both. I've tried calling my GP again to talk to someone but they are too busy dealing with strep A.

@Blueeyedgirl21 were you medicated at the first high result? I'm wondering if they will make me wait before they prescribe anything.

It’s good you still have your sense of humour OP 😅

but it’s so sad your gp hasn’t seen fit to start treating you, tbh I find it cruel as it’s not going to get better on its own

i was lucky my old gp was really good with thyroid disease etc

had surgery and not sure what this gp ( changed as new house)is like but thyroxine level was set by surgeon so I can refer back to that

ShinySylveon

id go back and ask how will it get better without medication? Your thyroid is not allowing thyroxine out and the lack of thyroxine isn’t going to change but making you feel awful

you have to go 8 weeks between blood tests for thyroid function test

I have gained about 3 stone in two years. I am VERY keen to get on some medication. I do try to keep a sense of humour 😂

ShinySylveon

im not surprised about the weight

but they’ll tell you it’s not connected

so when they do that jyst ask

so why if you have hyperthyroidism do you lose weight and eat lots- that stumps them….

when my TSH was 6/7 I actually reduced to eating two small meals a day as I wasn’t ever hungry. I did maintain my weight. But when my T4 was 63 I was eating 5000 calories a day and losing weight

Not sure what my husband's levels are, but he's on a 100mg. Before he got it and his levels right, the amount he slept was unreal.
My MIL was 120mg, but had most of her thyroid removed.

Having had experience of both hyper- and hypothyroidism.

Hyperthyroidism - lost weight steadily over a period of time, people that hadn't seen me for a while were concerned. I had a bit of excess weight at the start so people that saw me regularly weren't as concerned. Controlling the hyperthyroidism stopped the weight loss and there was a gradual weight gain back to my overweight norm.

Hypothyroidism - whilst untreated/under-treated there was a steady weight gain. On correctly dosed levothyroxine the gain stopped, I had a little weight loss but it plateaued (above where I'd like it).

I believe the doctors down-play the weight-gain association with hypothyroidism because they know that putting you on levothyroxine won't magically correct it. You'll still need to make a significant dietary/exercise effort to shift that extra weight.

They will put you on thyroxine and try to find the right level for you. It can take months of tweaking the dose. My TSH was 74 which is on the way to a coma but I still managed to function (just). I'm now hyperthyroid and been told to stop thyroxine altogether and waiting to see if that helps. Hope you can get your treatment soon. You'll start to feel better within a few weeks.