Autoimmune & seeing endo soon

[erinbeth]

I have a complicated health history, with several other conditions. My gastroenterologist did a series of bloods on me in the winter and my TSH came back too low (0.03). My t3&4 were fine though. She recommended to my GP that I see an endocrinologist. My GP did a follow up test and all came back in range. To make sure it wasn't a blip, she ordered another test for a couple months' time, including antibodies.

My TSH and T numbers were all in range, but the antibodies were quite high (not sure the number). I discussed the fact that I've had a sore throat for months, but that was dismissed because I also throw up daily (stomach condition). I have, though, been referred to an endocrinologist and I'll be seeing them very soon.

My GP thinks they will just monitor me until my thyroid properly kicks off, but I'd like to know if that sounds right. Should I be pushing for more at this stage, or is monitoring really all that needs to be done if my TSH and T3&4 are in range? Is there anything I should be asking the consultant when I see them?

Thanks!

[SlowDragon Administrator]

Definitely get copies of all blood tests done so far, including ranges. Post on here for advice .

High antibodies is most likely Hashimoto's

You need to read up as much as possible about Hashimoto's as it's very misunderstood

Essential to get vitamin D, folate, ferritin and B12 tested.

Plus consider changing to gluten free diet

With Hashimoto's hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms and eventually start to lower antibodies. Very very many of us here find it really helps and is essential to be gluten free

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

[erinbeth in reply to SlowDragon]

Thank you!

Gluten free would be incredibly difficult as I basically can only tolerate toast, soup, and crackers. It's something I will discuss with my endo and Gastroenterologist though.

[SlowDragon Administrator in reply to erinbeth]

You can get gluten free bread and crackers

M&S gluten free bread is very good. Loads of good gluten free crackers

According to Izabella Wentz the Thyroid Pharmacist, over 80% with Hashimoto's find gluten free diet reduces symptoms and lowers antibodies. There's no test for gluten intolerance. You just have to try it.

You don't have to have any gut symptoms at all.

Only 5% with Hashimoto's are certified as coeliac.

[Nanaedake]

It sounds to me like your thyroid has already 'kicked off'. Your TSH is low although you haven't put any lab ranges so I'm guessing. If you're in the UK with normal lab ranges this would be low. As you most likely have autoimmune thyroiditis otherwise known as Hashimotos this can make your blood levels vary so if they were normal before, they are low now. If when you test in a few months time the TSH has risen, you could ask for Levothyroxine as it will help to stop the antibodies attacks on your thyroid.

There are various things you can do to help your thyroid but first get a copy of your blood test results with the laboratory ranges and post them here, then people can give good advice. Lab ranges vary which is why you need to include them.

[erinbeth in reply to Nanaedake]

Thank you!

[Nanaedake in reply to erinbeth]

As you've already mentioned, your other medical conditions are likely connected if you have thyroid antibodies so very important to get hold of blood test results for those as well as other blood tests and check what's really been happening over the years.

If you've been undiagnosed hypothyroid for years then it's very likely affected your stomach acid production. It makes the stomach PH too low and people get treated for acid reflux as though they had high stomach acid as the symptoms are similar for both. Doctors don't seem to know about the connection between hypo and low stomach acid, Unfortunately, this exacerbates rather than helps the symptoms so we can't recover. Docs tend to throw more prescription meds at the problem as the NHS has no other approved methods or guidelines for care of thyroid patients.

When your stomach acid is low the valve to the eosophagus does not shut tight properly which means some acid sneak back up and irritates the eosophagus. People here use various means to address these problems, some change their diet, going gluten free, some use probiotics and others use a tablespoon of organic apple cider vinegar with a glass of water before a meal. Don't be surprised if your doctors know nothing about low stomach acid with hypthyroidism. They don't know very much about thyroid care unless they too have a thyroid condition.

As you have other stomach conditions you'll have to discuss the way forward with your doctors but read and try to understand as much as you can.

[erinbeth in reply to Nanaedake]

My GP said because my TSH was low that meant I was probably hyper, or would become hyper again if it drops again. Is hypo just more likely with autoimmune problems?

I have been diagnosed with gastroparesis and I have gastritis and a hiatus hernia too. So I'm being treated for those things already, although I don't doubt that my thyroid could be making my gastroparesis worse.

[Nanaedake in reply to erinbeth]

No one can say whether you are hypo or hyper without knowing what your thyroid and antibodies blood tests showed. If you have raised TPO and TgAb otherwise known as thyroid peroxidase antibodies and thyroglobulin antibodies then you have Hashimotos thyroiditis which means you will be or are very likely to become hypothyroid. Your antibodies will attack your thyroid and slowly destroy it so that you become increasingly more hypothyroid. When you antibodies attack the thyroid the dying cells release a lot of hormone and your TSH then dips making it look as though you are hyperthyroid but in fact your thyroid is only temporarily overactive and will settle back to being hypothyroid and probably a little more hypothryoid than before the antibodies attack. The attacks happen periodicallly so that there is a swing between high and low TSH levels.

If you are hypothyroid from Hashimotos thyroiditis you cannot be hyperthyroid. When your TSH is low your thyroid is overactive.

Your doctor cannot tell you whether you are hypothyroid or hyperthyroid without knowing exactly what your antibodies status is.

There is another condition called Graves disease that has another set of antibodies and some cross-over between the antibodies that appear with Hashimotos. Graves disease makes your thyroid overactive and you are truely hyperthyroid. This condition is approached somewhat differently than Hashimotos although some of the treatment is the same. Eventually with either condition people usually need levothyroxine.

Some people have both Graves and Hashimotos together. There can be temporary thyroid overactivity brought on by infections or illness and symptoms brought on by thyroid nodules.

It's very important to know which condition or combination of conditions you have got in order to know how to help yourself so you need to get hold of those blood test results and post them here including antibodies tests and laboratory ranges.

[erinbeth in reply to Nanaedake]

Thank you for sharing... That's all really useful information.

My GP did say that my TSH did take a big swing between the first and second tests, so some of what you said might fit in with that.

It sounds like I definitely should be expecting more tests to make sure I know what type of autoimmune issue I have, and such. I will be writing this down to make sure my endo does them.

Thank you again.

[Nanaedake in reply to erinbeth]

You will find more information about the type of tests you need from Thyroid UK website. There's a section on tests, diagnosis and Hashimotos thyroiditis. All worth a good read.

[Nanaedake in reply to erinbeth]

Just be aware that both GP's and Endos know very little about thyroid disease. Most Endos are Diabetes specialists.

[erinbeth in reply to Nanaedake]

Good to know... So prepare for battle! I can do that.

[silverfox7]

Before you go make a list of what you want to know and make sure he is also awhere of all your other problems as it's already been mentioned they could be relevant and actually down to your thyroid particularly if the treatment you get for them isn't helping.

A good Endo should send you for many tests so be prepared for that. I went to one several years ago having eaten and because I was so bad with a cough etc with loads of linctus etc to get me through the experience and my glucose level was through the roof!!!

I've on at least two occasions been asked to talk about my health so some bullet points re that can be useful as easy to miss something out that could be relevant so start a list now, and keep re reading before the day as I'm sure there will be things missed off at first.

When they mention tests ask if you can.be sent of your results. Useful for your own results to see how you progress abut also useful to post and then we can comment and explain what they mean. The ranges are important as well as they differ from lab to lab so difficult to comment without them.

Hope it goes well! Let us know how you get on.

[erinbeth in reply to silverfox7]

Thank you! I have a typed out page of my conditions and meds already (it makes life easier) so I'll make sure I have that to hand over.

I'll definitely ask for results too.

[erinbeth]

Thanks for the advice!

I've been diagnosed with gastroparesis and have had it for years. I do also have a hiatus hernia and gastritis as well (from the gastroparesis). I also have chronic complex migraines and I honestly think there must be some link to everything as things have gotten much worse in the past year.

[erinbeth]

Can you please tell me what NDT is?

[helvella in reply to erinbeth]

NDT = Natural Desiccated Thyroid

You might find my abbreviations and acronyms document of some use:

dropbox.com/s/og3lmxa1dqadb...

Desiccated thyroid is dried, powdered thyroid gland (usually from pigs) standardised for thyroid hormone content and made into tablets.

I do wish people would explain when they post abbreviations.

[erinbeth in reply to helvella]

Thank you!