Mild Hypothyroidism

[willsie01]

I was surprised when I joined this community how apparently mild my hypothyroidism is. Lots of members seem to have major problems compared to me such that I’m wondering if I should even be taking the levothyroxine I do. When diagnosed over 10 years ago the symptoms I went to the GP with were tiredness in the morning and difficulty getting out of bed. These seem to pale in comparison to what I read others suffer on this forum.

[Caroline888]

Hi willsie01

I do know what you mean! I have felt the same. Being hypothyroid has not been dreadful for me. However, I did have a lot of symptoms that, for years, I put down to menopause and ageing. General body aches and pains, particularly rib and joint pains and constipation were a part of my life. Falling asleep at random times and a distinct lack of energy definitely figured. What finally took me to see the GP for tests was groundless and extreme anxiety and a weird swelling under my bottom lip which I now think must be mucin.

Like you, I have not suffered greatly and feel very lucky when I can see from the forum that many others have not been so fortunate. Nevertheless since my diagnosis towards the end of 2017 all those symptoms apart from the mucin have resolved. I certainly feel so much better. I guess we should be very thankful that, for us at least, levothyroxine is so effective.

Hope you continue to do well.

Best wishes

Caroline

[greygoose]

There's no point in comparing yourself to others. It could be that your hypo was caught early and that if you hadn't been put on levo at that time, you would be a thousand times worse by now. You would seem to be one of the lucky ones that levo works well for, which doesn't mean you don't need it. Just accept that things are as they are and don't look for problems. That's never a good idea.

[SlowDragon Administrator]

There are around 2 million people in the UK on Levothyroxine......fortunately they are not all on this forum

It's recognised that 10-20% of people with hypothyroidism don't do well on just Levothyroxine for a variety of reasons. Well 10-20% of 2 million is a large number of people

There are over 102,000 on here. By far the largest community on healthunlocked

Unfortunately many medics only test TSH which is often inadequate if people have conversion or absorption issues

Autoimmune thyroid (Hashimoto's) or being under treated can lead to poor gut function and as result low vitamin levels

Important to keep vitamin levels optimal and regularly retest vitamin D, folate, ferritin and B12

Low vitamin D is widespread, in UK especially in people with darker skin

Vegetarian/vegan diet can make it more difficult to maintain good ferritin levels and B12 would likely need supplementing

It's also more common for problems with conversion of Levothyroxine (FT4) to FT3 the longer we are on Levothyroxine

[Xtandiuser in reply to SlowDragon]

I started Levothyroxine earlier this month! The day after I started it, I got an excruciating pain in my right knee! My PC doctor said it isn’t related! I found that the pain is a side effect but rare. What do you think! I’ve had pain daily for 3 weeks! Thanks!

[SlowDragon Administrator in reply to Xtandiuser]

What are your actual results and ranges.....From before starting on Levothyroxine ?

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Bloods should be retested 6-8 weeks after starting on Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Standard starter dose is 50mcgs (unless over 60 years old...then starting on 25mcg Levothyroxine)

Joint pain is frequently low vitamin D .....extremely common with hypothyroidism, especially if cause of your hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's

Are you also taking statins?

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

[Xtandiuser in reply to SlowDragon]

Wow! So much to know about hypothyroidism!only thing I know is, my TSH went up 3 months in a row and last one was 8.1!

I believe the Xtandi that I started 8 months ago is responsible for the rising TSH! Gotta have the Xtandi to keep my prostate cancer at bay so it is a Catch-22! I will look into all you answered! Just getting started on learning! Overwhelming!

[NWA6]

🤗 really pleased for you that Levo has worked for you and you haven’t suffered too much. I agree that this forum can screw ones thoughts of hypothyroidism. For about 80% of those with hypo Levo is the answer and it’s all very straightforward. Most of us are on here because we fall in that 20% who are either undermedicated on Levo or like me can’t convert that Levo well enough to T3 or many other reasons. We’re not the majority that’s for sure, we’re unique 🥰 Our doctors try hard to make us fit in with the 80% but we’re just not having it 😛