Underactive thyroid. Anyone else? What to expect?

[cheerfulcoconut]

Hi,

I've just been diagnosed with an underactive thyroid following a blood test earlier this week. I have a GP appointment in a couple of weeks. What should I expect? Is there anything I can do (diet etc) in the meantime to help the problem?

For reference, I was sent for the blood test due to ongoing problems with heavy periods and severe anaemia. Looking at the NHS page, some of the other symptoms do fit me, but I'd dismissed them as not being serious enough to worry about, or just one of those things.

Are they likely to medicate? How did this change your general health?

Thank you for any advice or experiences you can share. I'm not worried as such, just curious and wondering what might be next for me.

My hands and feet are always freezing some more energy would be nice

I was born without a thyroid... the first thing they will so is try to get your levels right which most likely will be taking medicine for the foreseeable future. I’ve been on levothyroxine since I was born... dosage has changed about 40 times in my 34 years of existence. Get ready for a lifetime of blood tests. Everyday is a lucky dip of symptoms, I never know which one will rear it’s head. You will get used to it.

For most people the cause of the hypothyriodism is Hashimoto's Thyroiditis - an autoimmune condition. Due to this, sometimes you are feeling symptoms related to the hypothyroid and sometimes you feel symptoms related to the autoimmune attacks. The medication typically helps to try and normalize the thyroid function but the ongoing autoimmune issues can be problematic. Many people with this also struggle to keel their iron and ferritin and Vit D and Vit B12 levels at a good range and low values in those also lead to many symptoms.

You will have to figure out what causes flare up or inflammation for you once your thyroid levels stabilize. For many people alcohol and some food groups make them feel achy and groggy. Exercise is good but can be hard to do when you aren't feeling well.

There is a really wide range of responses. Some people have very few issues, others struggle for years

This is very interesting. I went to Dr with long Covid last year and they diagnosed underactive thyroid. Levothyrixine made me feel spaced out and gave me brain fog so I've stopped taking it. Will have to speak to doctor at some point.

I've had hypothyroidism for a long time, OP. I take my daily dose of levothyroxine, have a blood test once a year, and I feel fine! When I was first diagnosed, I spent a lot of time online, reading about people who were never the same again, and I felt quite anxious about that. But I think internet forums tend to attract people who are having a bad time with their health, so it can skew your perception. Therefore, don't worry too much - it is possible to be hypothyroid and still be healthy and happy at the same time.

@CapitanSandy

I think I’ve got an under active Thyroid seeing my doctor tomorrow TSH has gone up slightly from 5 in August to 5.6 now. . My FT4 has gone down from 16 to 13 too. Generally I feel cold a lot, tired and sluggish.

The more I read goggle and MN threads I’m feeling nervous about medication and what will help.

Has anyone had any positive experiences?
Feel free to tell me to get a grip too!

It's a bit like how diabetics have to manage their medication and symptoms but a lot less dangerous and symptoms take a long time to manifest.

If you're on top of taking your thyroxine regularly and as instructed and your Gp is good at checking both levels and symptoms.

The British thyroid foundation has some really good fact sheets and advice on the website. If it helps, Davina McCall has hypothyroidism!

Key things are:

Always get blood tests in the morning, as early as you can consistently adhere to.

If on thyroxine take after a blood test.

Some vitamins, foods and medicines can interfere with absorption. Double check everything you take. Eg calcium, iron, high fibre, grapefruit (grapefruit is more linked to how liver processes it.)

Medication: consistency is really key and a large cup of water - I find waiting half an hour before my cup of tea works well and I now have my porridge about and hour or more later. Others have to follow other routines. Sometimes a tiny adjustment can help, eg I take 150 x3 days a week and 125 the other days.

It's half life is long, 7-10 days so missing the odd day isn't a big issue but also it takes around 6 weeks to reach the right level in your blood after a dose change or starting. Then sometimes it can take another month for symptoms to balance. That's why they have to adjust and test and adjust if needed and test. So it can take a while to feel better.

Your levels are creeping into subclinical hypothyroidism and I think NICE say you could trial Levo especially with symptoms.

When people are on a full dose of thyroxine they tend to feel best tsh around 1 or sometimes less. You may find you're ok on a low dose but over time it slowly need adjustments.

I agree that good ferritin (80+) b12, folate and Vit d are v helpful too. I also found that hrt helped lots of symptoms that were similar to hypothyroidism which I've had from age 20, but my levels were fine. And I never had those symptoms when younger and hypo. I actually think many middle aged women who struggle with thyroid issues even after a good level of medication could also be struggling with peri symptoms.

To summarise, you can feel very well when on the right dose.

It's worth checking other things if you don't feel well. Strength exercises are really helpful when you're on the right levels.

@WarriorN please can I pick your brains? My TSH is 6.8, free T4 is 10.3. Receptionist at docs says these are only just outside normal levels but I feel dreadful?

I was diagnosed 12 years ago and am currently on 150 mcg of Levothyroxine. I thought I was just tired as I had two small children, but it turned out my thyroid was practically moribund.😂

I’ve had my dosage adjusted up a few times to get it right, but I have to say that I noticed a big difference in my energy levels two weeks after I started taking it. It suits me best to take it last thing at night-like some other posters, I experienced brain fog when I took it in the morning, but I suppose my body absorbs it gradually overnight.

I haven’t gained weight and my hair thickened after I started taking it. Keep up exercise and eat well, as PP’s have suggested. Above all, don’t be afraid to take medication, it might make you feel much better, it’s certainly worked for me. 💐

[quote sjj257]@WarriorN please can I pick your brains? My TSH is 6.8, free T4 is 10.3. Receptionist at docs says these are only just outside normal levels but I feel dreadful?[/quote]

Drat lost a whole post!

Subclinical - see here: may need another test in 3 months before they treat, Gp should technically seek advice from endo / refer on.

Consider offering a 6-month trial of LT4 monotherapy in adults less than 65 years of age if:
◦ The TSH level is above the reference range but lower than 10 mU/L and FT4 is within the reference range on 2 separate occasions 3 months apart, and
◦ There are symptomss_ of hypothyroidism.
▪ If symptoms do not improve after starting LT4 therapy, measure the TSH level and if it remains raised, adjust the dose of LT4. Once the TSH level is stable (2 similar measurements within the reference range 3 months apart), check TSH annually.
▪ If symptoms persist when the TSH is within the reference range, consider stopping LT4 therapy, and assess for alternative causess_ of symptoms.

Don't take biotin a week before test! Also as early in morning as possible.

You can call British thyroid foundation for advice too.

It's an awful feeling, I hope you get well soon

Hi sorry to hear about all your suffering. I am feeling very down tearful.and not myself anymore. My thyroid is under active and started on thyroxine again in May just been increased from 25 to 50 to 75 tested 6-8 weeks between .My mobility has been affected I have been fighting to get to see someone about that but seemed the Dr thought the thyroid problem may be causing it .I too purchased a mobility scooter last November as I couldn't get out to walk anymore . I sold it again as I don't feel it's right not to keep using my.legs can only get worse. I use a stick and hubby let's me hold his arm. I feel a burden and as if I am spoiling holidays we liked to have with our family. Can mum make it that far if we go there. It's very upsetting . I just wondered did you get any help with mobility issues I tried to get a blue badge but with no proof of causes I was refused . I understand thyroid issues are qualifying but I am not sure mobility will be accepted and how to get proof of it.

so why do you not take meds now do you take anything else