thyroid problems: Hi everyone, My son has been... - Thyroid UK

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thyroid problems

misscaz01 profile image
13 Replies

Hi everyone,

My son has been showing signs of underactive thyroid for the last 6 years and has had his tsh tested 4 times! doctors say its in the normal range. He has now developed joint problems and has been diagnosed with inflammatory arthiritis by a rheumatologist, he asked her for a thyroid test but it did not get done.

He has gained a lot of weight which diets have not helped, he is able to do much exercise since the arthiritis and being in pain every day.

Gp now agreed to do a thyroid antibody test but says she does not think its thyroid.

I do know of someone else who had thyroid problems and got tested and was told more than once it was in the normal range.

We shall see what comes of this blood test which is not until middle of march! and i read on here about two different types of anti body so will see what the result comes back and ask him to mention the other anti body test, thankyou to the person who pointed this out.

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13 Replies
bluebug profile image
bluebug

Your son if over 16 he needs to get a copy of the blood test results with ranges. If you can then get a copy of him post on here and we will point things out you can tell him. Though it would be better if he posted on himself once he got them.

Regardless tell your son to all ways get his test results and to look at his medical records. The reason for this is to ensure the doctor doesn't put s*** on them - they are less inclined to if they know you will look at your records - and so he can be in control of this own health and "work with" the doctor to stay well.

bluebug profile image
bluebug

As your son also has arthritis the other things to test for is vitamin D, folate, vitamin B12 and ferritin.

misscaz01 profile image
misscaz01 in reply tobluebug

my son is 23 and just accepts what doctors tell him. I read online that joint problems etc can be a sign of a untreated thyroid, a nurse at a local hospital said get him to ask for a antibody test, he did ask the rheumatologist for the test but she did not do it, the gp has now agreed to do it but said she does not think its a thyroid problem. All we know at the moment is he has a lot of symptoms of underactive thyroid weight gain, depression, low mood, he has lost a lot of his hair which bothers him. He has chanaged doctors twice as he was not getting anywhere. He is having the antibody test done in march and in the meantime has ultrasound for the joints, ct scan for pelvic area and physio to be arranged.

misscaz01 profile image
misscaz01 in reply tomisscaz01

he has had a blood test come back showing plasma viscosity and doctor told him to take vitamin d saying it was normal range but for my son it was a grey area.

bluebug profile image
bluebug in reply tomisscaz01

Without results and ranges it is impossible to tell you what he should do.

Unfortunately he needs to be scared by a medical professional not doing the right thing for either himself or one of you, and nearly killing you while he is there before he will realise that the NHS is fallible. Many people, and I've found this more common in men, find it hard to accept other people's experiences including close family members.

misscaz01 profile image
misscaz01 in reply tobluebug

I understand what you are saying, the only thing that has shown up on a blood test is the alt is always raised, alt relating to liver function, has had liver ultrasound and flick test and all normal, still not had any reason why this is showing as raised, i did some research myself and that was also a link to under active thyroid which i put to the doctors and got fobbed off, doctor said to my son i think you and your mum need to put this thyroid business to bed! The only conclusion now is to wait it out for all these tests to come back and see what the end result they are giving.

I have looked into getting private blood tests done for him and someone recommended Harley street London as being one of the best. I think that is where we will end up eventually.

bluebug profile image
bluebug in reply tomisscaz01

You can do private blood tests through Blue Horizon or Medichecks then get GPs comment.

Both are able to arrange for you to get the blood taken at a hospital rather than just pin prick tests.

In fact that both have central London clinics and Blue Horizon uses the Doctors Lab based in central London for some of it's tests. This lab is used by private clinics and hospitals in and around London, but they charge you more for it than if you use Blue Horizon directly.

If the test results are then out of range you can arrange to see a specialist.

One thing you need to remember the majority of private GPs and specialists in the UK work for the NHS as well, so you won't get better medicine but just faster access to it.

SlowDragon profile image
SlowDragonAdministrator

Your son really needs to get copies of latest blood test results, ideally TSH and including FT4 & FT3

If they have not been done ......Suggest he ask GP to check his levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

Definitely need thyroid antibodies checked. There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both antibodies are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

TPO is rarely checked and TG almost never checked. More common to have high TPO or high TPO AND high TG, but negative TPO and raised TG is possible, though rarer.

ALWAYS Make sure you your son gets the actual figures from tests (including ranges - figures in brackets). He is entitled to copies of his own results.

If he can not get GP to do these tests, then like many of us, he can get them done privately

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

This test checks all these

medichecks.com/thyroid-func...

Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water)

misscaz01 profile image
misscaz01 in reply toSlowDragon

Thankyou for your reply and thankyou for the links to private testing, if he does have private tests and it shows he does have a thyroid problem will the gp just accept it or keep making excuses not to treat you.

soppysokes profile image
soppysokes

Hi misscaz.it could well be a thyroid problem and if the full proper tests are run and it seems ok then his problems could well be all related to the inflammatory arthritis which does give symptoms very similar to many of the thyroid ones. Really hope they look into it fully.keep behind them!

misscaz01 profile image
misscaz01 in reply tosoppysokes

thankyou for your reply,

His problems started 6 years ago, sweating quite badly, then weight gain very quickly and diet and exercise would not shift it, then low mood, lack of motivation and then he started losing his hair and flaky skin, his doctor said he was depressed and nothing showed on blood tests except his alt for liver function, they have found nothing on tests for his liver and specialist said he probably had lots of scarring but the ultrasound said no scarring at all and a flick test showed normal so he still does not have any answers for the raised alt, i found a link for raised alt and thyroid when it was put to the gp and the specialist they said its not thyroid but could not give any explanation why the alt is raised, asked the rheumatologist as well and she has no idea either, when i said i found a link for raised alt and thyroid she did not answer.

The rheumatologist ordered xray of all joints which was done the same day, hes got an ultrasound for all joints in march, waiting for a ct scan appointment to come through and has been referred to physio and another liver specialist even though he has seen 2 already and neither has answers for the raised alt, im guessing the rheumatologist wants another check.

gp also doing a thyroid antibody test in march and second visit to rheumatologist in april and an appointment with a clinical nurse for arthiritis treatment.

The rheumatologist said its inflammatory arthiritis but then wrote to the gp and said it was psoriatic arthritis.

My son wants to get all these tests done and see what final outcome the rheumatologist gives plus antibody test from gp.

You could be right about my son having arthiritis which has only come on since October last year, it could be both thyroid and arthiritis or the arthiritis has developed due to thyroid left untreated.

I think bottom line is he will need the private blood tests done to get a proper result and if private blood tests say he does not have a thyroid problem then we will have to accept it

Venicefan profile image
Venicefan

My son was in a similar situation. Fortunately he has a GP with some common sense. Because I have Autoimmune Thyroid Disease and there is a big problem with it in our family, the doctor tested him for antibodies quite soon after he moved there due to his symptoms. When the test results came back and showed that his antibody count was high, despite his tsh and t4 being within the normal range, he was started right away on levothyroxine. He has also started a gluten free diet because it helped me.

misscaz01 profile image
misscaz01 in reply toVenicefan

thankyou for your reply,

that is good to hear, my son is having his antibody test in march, i only found out about an antibody test from a nurse at my local hospital, gp did not mention it in 6 years. I had a feeling he had a thyroid problem right from the beginning but the first doctor said he had depression and alt for liver function was the only thing that showed on blood tests, i found a link between alt and thyroid and again was told by his gp that was not the case, he saw a liver specialist and they found nothing wrong with his liver, but the liver specialist said it could be hashimotos as he had red marks around and above the abdomen, but again the doctor said it wasn't.

He changed his gp and has got nowhere with this surgery either until last October when he began getting stiff joints out of the blue and his gp referred him to the rheumatologist, again i found a link that joint pains is also linked to thyroid but the rheumatologist did not comment and she was asked to test for thyroid and thyroid antibodies but the gp said on Friday this was not done so now she has arranged for the test but does not think its thyroid.

Your son is very lucky to have a very good gp who was able to see he could have a thyroid and did all the tests.

Its all very worrying that there are people out there who are suffering and not getting treated because gp's will not think outside the box and do other tests such as the antibody test. We have not mentioned private blood tests yet my son wants to get all the tests done and take it from there.

I do know a lady who had a thyroid problem hers was overactive she did lose a lot of weight and was accused by her gp of attention seeking and not eating etc, her thyroid tests showed as normal, she went to Harley street and they found she had an overactive thyroid and graves disease, so it does go to show the nhs tests are wrong.

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