Recently diagnosed as Hypothyroid

[sapawa]

Hi.

I've recently been diagnosed with as hypothyroid. It was completely out of the blue as I went to my Doctor with an unrelated issue but happened to mention that I had heavy periods. She ordered a blood test which came back with elevated TSH levels and she put me on a 50mcg of Levothyroxine (since increased to 100mcg).

I had no information about hypothyroidism so I naturally did some research over the following weeks and came up with loads of information regarding Hashimoto's disease, the possible benefits of going gluten free etc.

At a follow up appointment with my Doctor I asked her about Hashimoto's and whether I might have it and she was adamant that I didn't. So then I asked what caused the Hypothyroidism she said that some people just have it and that it runs in families which seemed contradictory to the information I found online.

As I understand it 90% of people who are hypothyroid in the UK have it due to hashimoto's and the other possible causes of hypothyroidism don't seem to apply to me. I'm concerned as she didn't consider it a possibility whereas from what I've read it seems to be entirely plausible that I have hashimoto's. Have I misinterpreted the information?

Any advice about this would be gratefully received.

Many thanks

[lynmynott Partner Thyroid UK]

Hi Sapawa,

Hashimoto's is usually diagnosed by thyroid antibody testing. Autoimmune conditions do run in families but sometimes they don't get exactly the same condition i.e. one member of the same family could have Graves' disease whilst another has Hashimoto's disease.

Hashimoto's is often sparked by major stress and this may be why the disease may not affect every sibling etc.

Unfortunately, in the UK, there is not much importance placed on thyroid autoimmune conditions, unlike the US where they look more into the root cause of Hashimoto's etc.

It might be a good idea to ask your doctor for thyroid antibody testing to see if you have Hashimoto's. If she doesn't want to do this, you can always get yourself privately tested via our website - thyroiduk.org.uk/tuk/testin...

[sapawa in reply to lynmynott]

Thanks for replying. From everything I've read I realise that knowing if I have hashimoto's or not won't change how the hypothyroidism is treated but I'd feel better being as informed as possible about what's happening with my body.

Can I ask my GP to do specific tests like the thyroid antibody one? I'm not the most assertive person and I don't want to go in there and look like I'm telling her how to do her job.

[lynmynott Partner Thyroid UK in reply to sapawa]

Hi Sapawa,

You can certainly ask your GP for thyroid antibody testing. Some will do TPO (thyroid peroxidase) only and some will do thyroglobulin (TgAb) as well.

Knowing whether or not you have Hashimoto's will help you research the condition further and try to make some lifestyle changes such as going gluten free, dairy free and avoiding stress.

There are some good books around now about how to deal with Hashimoto's.

[sapawa in reply to lynmynott]

Thank you - that's good to know. It really threw me when I went back to my GP for a follow up visit as I expected some more detailed information about being hypothyroid and if there was anything I could to do to best manage it but there was nothing. I was diagnosed and on Levothyroxine and that was it, nothing further to do but go back for regular blood tests until my levels were back within normal range. Based on a lot of the posts I've read I realise I've been very lucky with a quick diagnosis but there's so much information out there and it's a lot to process. This forum is a great source of information so again thank you

[shaws]

Hypothyroid and Autoimmune Thryoid Disease (Hashimoto's) are treated with the same thyroid hormone and in the same way i.e. levothyroxine and you will have a blood test every six weeks or so with an increase of 25mcg. To confirm Hashi's you need a thyriod antibody test. The antibodies wax and wane their attack on the gland until you are hypothyroid.

The blood test should be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take afterwards. This helps keep the TSH at its highest as doctors are apt to adjust hormones according to the TSH. This procedure doesn't bode well for the patient.

You can take levothyroxine first thing with one full glass of water and wait about an hour before eating. Or, at bedtime. If you choose bedtime dosing your stomach must be empty but if having a blood test next a.m you miss this dose and take if after test and night dose as usual.

Ask GP to test, Vitamin B12, Vit D, iron, ferritin and folate we can be deficient.

Always get a print-out of your results with the ranges for your own records and you can post if you have a query.

[sapawa in reply to shaws]

Many thanks for the info and advice. I shall certainly be asking for a print out of my results in future. I need to go for a blood test in a couple of weeks but was given no instructions as to fasting or not taking the levo for 24 hours before hand which is clearly not hugely helpful as the levo can skew the results.

[shaws in reply to sapawa]

Few doctors know sufficient, unless they or someone in their family has the condition.

[shaws in reply to shaws]

Before blood tests and levo were introduced, all doctors knew ALL of the clinical symptoms and we were given natural dessicated thyroid hormones and if hypo we recovered. If not the search was on for what was ailing the patient.

Big Pharma makes millons of $$$$$s worldwide from blood tests along with levo as those who are on levo and not doing well will be given other prescriptions for the disabling symptoms.

[sapawa]

Unfortunately not, I didn't think to ask for a print out.

I remember my TSH level was 14.82 but don't remember any of the other numbers.

[greygoose]

Doctors in the UK do not like calling autoimmune hypo 'Hashimoto's', I've no idea why. If they call it anything, they call it 'Autoimmune Thyroiditis'. But, they prefer not to talk about it at all, because they don't know what to do about it. And, as the treatment for all forms of hypo is thyroid hormone replacement, they don't think it matters. Your doctor is totally wrong to maintain that you definitely don't have it, because there's no way she can know that. Even testing the antibodies isn't 100% fool-proof.

Even if you asked your doctor to test for it. She would only test the TPO antibodies, when in reality, there are two different types of antibody. But the NHS will not test for Tg antibodies. However, you could get them done privately. Details of private testing can be found on the Thyroid UK home page, if you're interested.

However, you could try going gluten-free, anyway. See if it helps. It does help some people, even if they don't have Hashi's.