underactive thyroid

[Cloud77]

Hi there, I am 41 and current being treated for an underactive thyroid of TSH 12.3. I have been prescribed 50mg of Levithyroxine which I have taken for the last couple of weeks. Not really seeing a huge difference to tiredness etc but wanted to ask how long it takes for the levels to reduce, is it a fairly slow process or a couple of weeks? I have since had a Thyroid autoantibody test which has come out as 822. Yet to be discussed with my GP. This does seem to be quite high. If anyone has any useful advice I would be so grateful as praying this magic pill will give me back my energy as I feel so knackered! Many thanks!

[PurpleNails Administrator]

Welcome to forum

It’s very early days & it takes time to see a permanent improvement, but you are now on the right track. Doctors don’t explain this.

Recommend you start collecting your results - either arrange a printout with ranges (via practice reception) or set up online access to medical record.

Your TSH (thyroid stimulating hormone) is from the pituitary. When it’s high it’s signalling the thyroid to work more as the thyroid levels are low. Do you know what your FT4 & FT3 level are?

The FT4 & FT3 are the thyroid hormone & the treatment is to increase these levels. Levothyoxine is synthetic T4. It works best if nutrients are optimal so you systems converts what it needs to FT3.

Have folate, ferritin, B12 & Vitamin D been tested? As these often become low when hypothyroid.

50mcg is a starter dose. The aim is to gradually increase until your thyroid levels are right for you & your symptoms resolve.

This is usually in 6-8 weekly intervals. You need a retest of thyroid function & increase of 25mcg daily.

Most feel well when TSH is nearer 1 and FT4 is top 3rd of range. FT3 at 50% or over.

Most describe they feel better by 3-4 weeks but that symptoms can gradually start to creep back by 6-8 weeks - this is when you need an increase.

Many GPs go by TSH alone and will consider it job done once TSH is in range. So it’s important to find out what Information your doctor is using to treat you.

Initially the replacement “tops up” levels but by 6 weeks it replaces what the thyroid puts out.

There are several types of thyroid antibodies it’s likely TPO - Thyroid peroxidase & it’s likely a positive level although lab range vary.

TPO antibodies confirm your thyroid is affected by an autoimmune condition (your immune system is attacking your thyroid). The damage results in your thyroid lowering its ability to function. In the UK this is called ‘autoimmune thyroiditis’ but it’s commonly referred to as Hashimoto’s. Doctors just tend to refer to low / under active thyroid or hypothyroid.

Doctors don’t pay much attention to antibodies as the autoimmune aspect isn’t treated the low hormones are.

Recommend test are booked for 09.00 you fast overnight (except water), and delay replacement until after draw.

Biotin can affect tests & should be stopped 5 days before.

Best to stick with a brand of levo you are suited to.

[Cloud77 in reply to PurpleNails]

Thank you so much for your really helpful response! Hugely appreciate it. I have another blood test booked in for 4 weeks so will see what the levels are. My T4 is 9.6 but can’t see the T3 level? I will definitely see if I can get the other tests for B12 etc. I thought I had a bit more energy after the first week or so but now feel so wiped out. Maybe it was a bit of placebo! Have read lots about gluten free too so will take a look into this too. Thank you.

[Sleepman]

I am a year into underactive thyroid and purplenails reply is spot on. The team on here really helped me to learn and feel well again. I was a lot higher TSH.

Fatigue and brain fog are pants.

Not normally awake at this time but I have just been dealing with a work thing.

It is a slow drug, it will be a while to get energy levels back. Be kind to yourself, rest when you have to.

Most people are fairly straight foward.

A lot of people have issues with gluten. I do, I have to cut it out completely. I did not show up on celiac blood tests. Symptoms are similar to low thyroid. Get tested as you need to be in gluten for 6 weeks before testing.

I got blood tests done and needed vit d, folate and b12.

Push for an early first blood test as your dose may be too low and they maybe able to increase faster.

I kept notes of how you feel and what to do next with doctors and bloods. Dose should be on symptoms as much as blood tests.

Read peoples bios and write your bio. It will help the wise ones to give you best advice.

Most doctors are not well trained in this area.

[Cloud77 in reply to Sleepman]

Thanks so much for your wise words. Hugely appreciate it. How can I be tired after an 8 hour sleep… ahhhhhh!!!

[greygoose in reply to Sleepman]

It is a slow drug,

Levo is not a drug. It's a hormone. That's why it's slow. With hormones you have to start low and increase slowly, giving your body time to adjust between each increase. Patience is necessary!

[tattybogle]

Hi Cloud77 ,

A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism. "The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

My experience was :

Started on 50mcg ....felt nothing for ? 2/3 weeks, then had about a week of feeling quite a lot better, it only lasted a week ... by time of first blood test at about 7 weeks i was back to feeling just as slow and knackered as i did before i started levo (this is quite usual).

Dose then increased..... this time , felt nothing for a couple of weeks , then i felt a bit better for about ? a month ,, and then back to 'not so good' again .

Blood test after ? 3/4 mths ... dose increased again..

this time i stayed feeling better for several months , then less good again , (but nowhere near as bad as i was before i started levo) .

dose was then tweaked a bit up and down to find best level.. and i would say that once on settled dose of 150mcg i felt 75% better for most of the time. ( i've never felt 100% better)

[Hidden]

I've only just been diagnosed and a few days into levothyroxine. Just wanted to commiserate with you. Also right there feeling tired and days with fatigue wishing for an end and back to normal.

[SlowDragon Administrator]

High thyroid antibodies confirms autoimmune disease also called Hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

GP should have done vitamin testing and test for coeliac disease at diagnosis of autoimmune thyroid disease

If vitamin D, folate, ferritin and B12 levels not been tested yet, get these done at same time as coeliac test

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.