I'm so Confused - Hashimoto's vs Hypothyroidism

[Treadmillmom1]

I am utterly confused. I've been told for thr last 5 years I have Hypothyroidism and taking 50mcg of Levothyroxine. My dosage has never changed and I have never stopped complaining to my GP that I cannot keep my eyes open nor concentrate. I changed GPs recently and finally the new GP listened to me and has referred me to an Endocrinologist. I haven't seen the Endocrinologist but attached is an exert of a letter from the Endocrinologist to my GP. I am so confused and worried, no one has ever mentioned Hashimoto's to me before, what does this all mean?

[greygoose]

It just means that the cause of your hypothyroidism is an autoimmune disease.

With Hashi's, your immune system is falsely identifying your thyroid as the enemy, and slowly destroying it with the occasional attack. After the attack, the antibodies come along to clean up the debris left in your blood by the attack. And, that's how Hashi's is diagnosed, by the presence of raised antibody levels.

There is no special treatment for Hashi's, no cure, all we can do is treat the resulting hypothyroidism with thyroid hormone replacement: levo. Just as with hypothyroidism caused by anything else - and there are many possible causes. So, you don't have to worry that you're on the wrong treatment.

What you should be worrying about, by the sound of it, is that you're not on enough of that treatment. And, your previous GP should be shot for leaving you on a starter dose of levo for all those years. It should have been increased six weeks after starting it.

Your new GP doesn't sound much better informed (most of them aren't!) in that he has to refer to and endo - who doesn't know much about it either, it would seem - to find out what to do next. There is no such thing as 'normal' where blood test results are concerned. When a doctor says 'normal', all he means is 'in-range' - he doesn't know any better. But, the ranges are usually so wide that the important thing is where your result falls within the range. Did you get a copy of the actual numbers: results and ranges? You can still be hypo even with results in-range, and that would be why you still have all these symptoms.

So, your next step should be to get hold of these results and ranges, and post them on here so that we can see what's what and explain them to you.

[Treadmillmom1 in reply to greygoose]

Thank you for your detailed response, I've attached my blood results, does that help?

March 2021 blood results

[greygoose in reply to Treadmillmom1]

Well, he's only tested TSH for thyroid, which is of little use to anybody. Yes, it's in-range, but too high for someone on thyroid hormone replacement. And, despite what these delusional doctors think, there's no way you can guess the levels of your thyroid hormones just by looking at the TSH, which is a pituitary hormone. It's complicated, but what you really need tested to find out if your dose is too low or too high are the FT4 and FT3, the thyroid hormones.

As for the rest, there are a lot of tests I know nothing about, but your B12 and folate are on the low side - B12 should be at least over 550, and folate at least mid-range. But, as they are in-range, doctors think they're perfect.

Can't see any antibody tests on there...

[Treadmillmom1 in reply to greygoose]

The attached Antibody Test Results below are ones I paid for privately.

Private Antibody Test Results

[greygoose in reply to Treadmillmom1]

Ah ok. So, yes, you do have Hashi's.

[Sparklingsunshine]

Hi, I think I'm right in saying 90% of people with hypothyroid have Hashimotos. It's when your own immune system attacks the thyroid gland and renders it inactive or less than optimal.

Doctors aren't sure why this happens it's an autoimmune condition and like many autoimmune disorders attacks mainly women, our immune systems being more reactive than men's. If you have a family history or another autoimmune condition you are more at risk. Your antibodies were tested and found to be high and that confirms its Hashimotos. Its named after the Japanese doctor who first discovered it.

I think its very poor that you've never had your dose increased and its quite likely that you are undermedicated and that's why you feel so tired. Have you had regular blood tests to check your thyroid levels. 50mcg is the starter dose. And most people will need this increasing by 25mcg every 6-8 weeks after retesting bloods. The amount of Levo we need can often fluctuate throughout our lives. I'm currently on 125mcg and I started on 50mcg in June 2020.

It's good that your new GP is being proactive and is referring you to an Endo.

[Treadmillmom1 in reply to Sparklingsunshine]

Thank you for replying, the Endocrinologist does not feel the need to see me as detailed in thier letter to my GP.

[Sparklingsunshine in reply to Treadmillmom1]

Hi sorry I didn't see that,most cases of hypothyroid are dealt with by your GP. Hopefully you'll get your bloods checked regularly to check dosage.

[Knip in reply to Sparklingsunshine]

Am I right in guessing that there is no separate test for Hashimotos in relation to thyroid issues. I know mine is autoimmune but no one has ever given it this label. I know it makes no difference to the treatment but I'm just curious. This site is so helpful and I really appreciate it.

[Sparklingsunshine in reply to Knip]

Hi they can test for antibodies to see if it's Hashis or not. My antibody test was negative so my thyroid has given up for unknown reasons. But it doesn't make a difference to what treatment you are offered, ie Levo.

[Knip in reply to Sparklingsunshine]

The proteins showed up in my bloods taken for RA, when they were checking my antibody status, when I was in my 40s and they told me then that I would have a Thyroid issue later on. Five years later I started on Thyroxine when the symptoms showed themselves...so I'm guessing that's what I have, assuming 'proteins' alluded to in this case are the antibodies.