Autoimmune thyroid conditions.....

[dizzyflossy]

Hi, this might be a really silly question... but hey ho. I've long thought that I had hashimotos. Yesterday my GP asked for some copy letters from the various hospitals that have seen me about my endocrine problems, but nowhere on any of the letters could I find reference to hashimotos. I feel sure that I wouldn't have just got that from anywhere, so now I'm confused.

What I did find, were letters saying that although they'd thought I had primary hypothyroidism, when they measured antibodies they were present in high levels - TPO antibodies I think. Therefore they changed the diagnosis to autoimmune thyroiditis.

At some point I also had a thyroid ultrasound and technetium (radioactive isotope) scan, which confirmed that although there were lots of nodules, they were not active. I have been through both under and over active phases though.

I have never had a goitre, which I understand most hashi patients get.

So am I a hashi patient or not? Thanks for any advice.

[MacG]

Hi dizzyfloss,

I too have Hashi's. My understanding is that if you have have high TPO (Peroxidase Antibodies) that is then the definitive diagnosis.

I don't think you necessarily have to have a goitre. I certainly have never had a goitre. I think you develop a goitre if it is untreated.

I am really interested that you too are a little confised as to whether you have Hashi's or not. I have seen other posts asking similar questions.

This is the important point, I think, that it seems to be the case in mainstream medicene that often patients are simply told that they are hypothyroid and not necessarily that they have Hashimoto's. This was certainly so, in my case. I worked it out with the help of this website. Then a few months along the line when I first visited my new GP, I said to her, "I have Hashimoto's don't I?" and she said "yes".

I think it is another example of the way in which thyroid problems are viewed/treated. Hashi's is an autoimmune condition and you need to know this if you have it.

[chihiro]

Hi dizzyflossy

autoimmune thyroiditis is another word for Hashimoto. So yes you do have Hashi.

As for the goiter, you can totally Hashi without a goiter. I have Hashi but no goiter.

Cycling through hyper and hypo phases is typical of Hashimoto. It is caused by the autoimmune attacks on your thyroid. When the antibodies are high it means your thyroid is being attacked which in turn means that most likely big amounts of thyroid hormone are being dumped into your bloodstream causing your blood results to show you as possibly hyper.

Personally I think that when you have Hashimoto you really shouldn't focus or obsess over TFT...because they change constantly. In a healthy individual with no thyroid issues the levels should pretty much be the same. For example if you tested their blood at the same time each day the numbers shouldn't vary much. When you have Hashi you can test someone's blood one month and their tsh will be 4 and the following month at the same time of day their tsh would be down to 1. It's due to the unpredictability of the disease.

[foreversummer]

It is pretty confusing.

When my TPO antibodies were tested they were 1618 (range 0-100) and underneath it said the result was indicative of hashimotos as I saw my results on the computer screen when I was with the nurse.

I have never had a goitre nor have I experienced the hashi swings that so many talk about on here. I've only ever had hypo symptoms.

I don't think there is a definitive answer to your question.

[catalonia in reply to foreversummer]

Confusing isn't the word for it! At the hospital eye clinic last week (I have thyroid eye disease and am hypothyroid) she categorically ruled out Hashi's as I "don't have a goitre" ....?!

[greygoose in reply to foreversummer]

foreversummer, the swings aren't obligatory - neither is the goitre. lol I have Hashi's, but never had a goitre. The swings are very individual. They are not standardised. You can go for a long time being hypo, or a long time being 'normal' come to that. Or people can swing on a daily basis. (Not the good type of swinging, though!) Or you could just swing slightly and not even notice it. It's not a symptom that can be used to diagnose. So don't worry if you don't have it. If you have high antibodies, you have Hashi's, sure and certain.

Hugs, Grey

[crimple]

I was diagnosed hypo and then after 5 years started to go downhill, TSH all over the place, episodes of being very very tired or else very wired, alternating between constipation and......I asked for a TPO test and the result was high. Neither GP nor the endo he contacted said I had Hashi's. My levo was raised from alternate 75/100mcg to daily 100mcg. I had discomfort in my throat and neck couldn't bear clothes near my neck. I decided to have a private thyroid scan (£120) showed my thyroid was very severely shrunken.

Thanks to this site I started to read about Hashi's, Isabella Wentz, Robb Wolf etc. I went on gluten and lacto free diet and my TPO 6 months later was almost at zero! Having read some more I made sure that I supplemented with selenium. My next step is to do something about my shockingly low Iodine levels. having read another book by David Brownstein, Iodine why your body needs it.

If NHS give you a diagnosis of Hashi's then rightly you would expect to be treated for it. Unfortunately, they don't know how to. They only know about ticking boxes and making sure your TSH is within a certain range, regardless of your symptoms. You are not an individual, just a means of generating cash, but there is no money in thyroid patients. Lots of money for prescribing statins, anti depressants etc etc. Excuse my cynical rant, I go off on one every so often, especially when there have been a series of posts on here which quite frankly show appalling clinical negligence towards patients, in my view.

I am afraid there is no quick fix for thyroid problems, but plenty of info and help on here so that you can be empowered to sort out your health issues yourself. Hope you are successful

[donna8077]

Agree an awful lot with crimple about this but just wanted to add. I recently had routine tests for my type 1 diabetes and my TSH came back high. I had had a severe sore throat since a virus in May and I had my suspicions that I had Hashimoto's due to other indications. I pushed my GP to test for antibodies and the TPO thyroid peroxidase came back in the 300s.

I was diagnosed as having autoimmune thyroiditis... You may think that my GP diagnosed me as having Hashimoto's? Well he adamantly told me it was not Hashi's. He said it was very rare and that I didn't have a goitre so it couldn't be Hashimoto's thyroiditis! Now from reading I understand that there are two genes involved in how Hashi's presents. One leads to the "apparently definitive" goitre and one does not. Guess which one we both probably have?!

This is why Hashimoto's is not diagnosed properly, the GPs really don't know what they are talking about!

Just in addition to crimple's post. Start changing your diet. Make it your mission to find out as much as you can about going gluten free, dairy free and soya free. Consider doing autoimmune paleo or some other eating plan that helps to cut your antibodies because this is how you start to beat this thing.

I've thought for ages that my priority was to get on thyroid medication and to be honest I'm not so sure and neither is my endo. She has encouraged me to sort out my vitamin deficiencies first so that the medication works properly and I have decided to tackle my diet alongside with a view to antibody reduction.

Hang in there!

[dizzyflossy in reply to donna8077]

Hi Donna8077, thanks for the information (crimple too). All very useful. I've recently realised diet may be having an impact and cut out gluten and dairy for 4 weeks, which resolved some awful abdominal pain I'd been having long term. What prompted the change was that I was getting repeated ovarian cysts, and I read something that said gluten, particularly combined with autoimmune thyroid disease, can seriously impair fertility. And, just like that, after cutting it out, I am pregnant after 2 years trying! I've slowly reintroduced very small amounts of dairy (need the protein and calcium now I'm expecting), without any recurrence of pain.

The forum is really informative, and having now been referred to both obstetrician and endo, I will feel better placed to question what they come up with!