I'm new here.

[Panya]

Hi everyone,

I have just been diagnosed with hypothyroidism.

Blood Report:

Free Thyroxine 3 pmol/L

TSH 64.65 mU/L

I have been started on 100mcu Levothyroxine which I've only been taking for a week.

My doctor is not sure if have Hashimoto's but doesn't feel it's necessary to confirm or rule it out with an antibody test because 'whether you have it or not the treatment is the same'. I would actually like to know if I have Hashimoto's. Do you feel it's reasonable to be more assertive about wanting a definite diagnosis?

My other question: I have had a tendency to swollen ankles (and calf in one leg) for many years now. Doctors couldn't find the cause. It now seems likely that this is connected to my recent diagnosis (though my blood tests also uncovered that my kidney function is slightly below-par - also probably connected - so that could be a factor).

Has anyone else had this symptom - and did it eventually resolve for you?

Thanks!

[SlowDragon Administrator]

How old are you?

Standard starter dose is 50mcg Levothyroxine, however more modern thinking is that it may be better to start at higher dose straight away

See how you get on. If you feel a bit hyper, you can cut back dose a bit for week or so. But you may be fine

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Bloods should be retested 6-8 weeks after being on each dose

GP should test vitamin D, folate, ferritin and B12. Either now or at retesting of thyroid levels. Plus it is important to test thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

[Panya in reply to SlowDragon]

Thanks, very helpful tips here! I am 62 years old. I had many of the symptoms of low Thyroid as long as 10 years ago and requested a test at that time - to be perplexed when I was told my levels were normal. I didn't know enough at the time to challenge the result or investigate further.

As my present GP has only carried out 3 of the 9 tests you list as essential I imagine my next visit (in 5 weeks) is going to be interesting...

[SlowDragon Administrator in reply to Panya]

Suggest you read posts on here daily. You will soon pick up loads of useful information

[jimh111]

They can measure antibodies which would confirm that you are likely (about 85% certain) to be suffering from autoimmune hypothyroidism but the chances are that your hypothyroidism is due to autoimmune attack. It doesn't really alter your treatment although some symptoms can result from the antibodies which usually die down in time. I wouldn't worry for now but if you are still unwell in say 6 months time you could run a private test.

Your hormone levels were very low so it was good to start you off on a highish dose, close to the final dose. I suspect you will do better than most of us problem cases on the forum.

[Panya in reply to jimh111]

Hi, thanks for your words of experience. I certainly hope that as my diagnosis was so black and white the treatment proves correspondingly straightforward - reading here I realise that is often far from the case. I have determined to educate myself about this condition as it is already clear that I can't rely on much more than the very basics from my GP.

[greygoose]

Seems to me you need to know if you have Hashi's, so that if your levels suddenly go sky high, you know what's causing it. Because your doctor won't, and will probably accuse you of 'abusing' your thyroid hormone. At least you'll be able to set him straight.

[Panya in reply to greygoose]

Thanks, that is interesting. I am going to ask for the antibody testing and see what happens.

[greygoose in reply to Panya]

I think you should.

[Hidden]

"TSH 64.65 mU/L"

WOW! That is high, and your FT4 (thyroxine) looks very low. I'm amazed you are still able to function. Next time you post results include the reference ranges - usually in brackets after the result, or with an "R" beside them. As in "TSH 64.65 mU/L (0.27-4.5)". Labs can differ in the ranges they use.

No doubt that's the reason you were put on 100mcg of Levo, which is double the usual starting dose.

Do you feel any improvement yet? A week is probably too early but everyone's response is different.

Problems with kidney or heart function would cause swollen ankles. But, guess what, that could all be down to your thyroid problems! So hopefully thyroxine treatment should help.

[Panya]

Your reaction is pretty much the same as my Doctor friend and neighbour (sadly not my GP) - she said she didn't know how I could still stand up! I put down my ability to still more or less function normally to the balanced plant-based wholefood diet I adopted 2 years ago to (successfully) lose the extra weight I was piling on; and to walking my dog 1 - 2 hrs every day. On top of that I was doing 3 CrossFit sessions a week until recently, when I started feeling too worn out and (as I thought) apathetic to face going to the Gym.

My full report figures were:

TSH 64.65 mU/L (0.27 - 4.2 U)

Free Thyroxine 3 pmol/L (12 - 22 U)

I don't think the ankle swelling is due to heart problems - that was investigated when I started having an issue with it years ago. Maybe kidney - though my results are only borderline poor. As you probably know undiagnosed low thyroid can affect the functioning of the kidneys; I don't know if that damage can be reversed.

To be honest I'm not feeling that much better yet - perhaps a tiny bit more energy. But early days.