Advice please

[Cree]

Hi, Got follow up appointment with endo next week. Letter I got from Last blood test says .... TPO antibodies are positive (360 U/ml) .... from that reading , what do I want to discuss with endo?

[Marz]

healthunlocked.com/thyroidu.....

The Link above is from two years ago - have things improved regarding vitamins and minerals ? Were you able to follow the advice given ?

What is it you are hoping for from the Endocrinologist ? - sorry you did not mention the issues you are facing.

Regarding the raised anti-bodies - am not sure the Endo will have advice as they rarely consider them an issue - sadly. Better advice given here - try being Gluten Free - taking Selenium and healing the gut to improve absorption

[Cree in reply to Marz]

Hi Marz, since that full report I’ve taken all the supplements that you all suggested. Seen a new endo and I said that I’d been told (by you guys) that I had high antibodies and her reply was “well that doesn’t matter, whether ant bodies are high or not the treatment is still the same ... levothyroxine. She then took bloods and sent me a letter saying adequate vit d levels, Coeliac screening negative and TPO antibodies are positive (360 U/ml). Not seen her since but seeing her next week so want to know where I’m at. Are the antibodies higher since the full lab report? If I raise my levo a bit then I get shaken and aggressive but still have a lot of symptoms BUT if it’s not my thyroid then it’s something x

[Marz in reply to Cree]

Yes the treatment is the same - but she is missing the most important advice - about the things you can do for yourself. Do you have to see her next week ? - what are you hoping to achieve ?

Yes anti-bodies have risen slightly - but then again they can often fluctuate ....

[Cree in reply to Marz]

Marz, i don’t have to see her but I want answers to feel better. I try not reading too much on internet because I would end up thinking I have cancer but I’ve tried looking for answers and there’s cortisol and adrenals quite often get mentioned but it’s something endo has never mentioned x

[Cree in reply to Cree]

Are the antibodies seriously high, moderately high or nothing to be concerned about?

[Marz in reply to Cree]

If it was me and I was worried about Adrenals - then why not have the test done privately - through Geneva I think is the name .... In the NHS they will not do the 24 hour Saliva Test - which I have read is the most useful.

Endos will not mention these things - we have to be informed and then ask the right questions it seems - from reading here.

Your anti-bodies are not seriously high - mine were in the 1000's back in 2005.

Have you had bloodtests done in readiness so you have something to discuss ?

Have you re-read your post/thread of two years ago ? Which books have you read ?

[Cree]

I ended up getting a couple of books on autoimmune self help which really is about AIP and Gluten free. All the reading of autoimmune disorders/hashis/thyroid just goes over my head and then i start worrying about how my body isnt working proberly. I had tried low carb high fat for a while and felt good but then ended up on fentanyl patches so diet went out the window. Gp also thinks ive got rheumatoid arthritis (already have osteoarthritis and had 4 ops on affected joints) So im probably correct in thinking that i have to follow the AIP diet and/or gluten free to help myself, am i correct?

[Cree in reply to Cree]

I get outburst of adrenalin and waves of anxiety which im sure was related to cortisol or adrenals. Ill see what endo says about that and ill look into getting my own bloods done. Also how often should my thyroid get scanned?? Tiny nodules on it last time i was scanned a couple years ago?

[Marz in reply to Cree]

I suggested the book by Doctor Barry Durrant-Peatfield - which explains the Thyroid in an easy to understand format - see your thread of two years ago. It also covers Adrenals - what a shame you didn't buy it. Perhaps you can get it on Kindle.

I would not mention anxiety to the Endo - she will put it down to depression and offer AD's - and then once on your notes they will not look further. Adrenals - you could mention but as I said before they do not do the most important 24 hour Test.

A GOOD Doc should palpate the throat and then decide if nodules have grown - if not then no further action unless you are having problems swallowing. Cannot remember the last time I had a scan. By all means ask for one - but it could take months to come through - adding to your stress.

Following Gluten Free can help to reduce anti-bodies. Dairy can also be an issue - is inflammatory.

So which supplements are you taking and how much ??

[Cree in reply to Marz]

Marz, please don’t think I was being disrespectful not taking book suggestions from yourself and others, advice I get here is valued and much appreciated however reading about the biology? of our organs and how they work really goes over my head, for some reason reading about self help interests me more. I take..

Vit E 180 mg a-TE

Vit D3 62.5 ug

Vit B super complex Thiamin 91mg

Riboflavin 50mg

Niacin 50mg

Vit b6 41mg

Folic Acid 50ug

Vit b12 5ug

Biotin 50ug

Pantothentic Acid 69mg

Inositol 75mg

Choline 75mg

Para Amino Benzoic Acid 50mg

Zinc &Magnesium Vit B6 11.1mg

Magnesium 450mg

Zinc 30mg

Copper 0.6mg

Levothyroxine 125mc

I had been taking iron but was getting ridiculously constipated 🤭

[Marz]

How do you take your Iron ? - hopefully away from your Thyroid Meds - around 4 hours. VitC aids absorption. Did you increase your iron as suggested by humanbean two years ago ?

[Cree in reply to Marz]

I don’t take anything around the time of my levo, I always leave a couple of hours. I did increase my iron but ended up being constipated :/

[Marz in reply to Cree]

VitC aids absorption and prevents constipation taken to bowel tolerance ... Iron best taken 4 hours away from Levo ...

[Cree in reply to Marz]

I didn’t supplement vit C as I like dairy and didn’t think I’d need to up it.

[SlowDragon Administrator]

Can you add your most recent blood test results and ranges for TSH, FT3 and FT4 plus vitamin D, folate. Ferritin and B12

Yes very high number with Hashimoto's find strictly gluten free diet helps or is essential.

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut and gluten connection is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Cree in reply to SlowDragon]

Hi Slowdragon, I don’t have an up to date copy of my bloods, any time I get tested they say they’re ok and if endo isn’t going to tell me anything more than to keep taking my levo I don’t ask for copies I seriously want to try gluten free but I tend to stand in the supermarket and don’t know where to begin because it’s in so much stuff that we wouldn’t imagine ie makeup, toiletries, lip balm etc

[SlowDragon Administrator in reply to Cree]

First you are legally entitled to copies of your own blood test results.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

Yes we all thought the prospect of changing to gluten free diet was extremely daunting.

Suggest you get ready to try it by looking at typical things you eat for two weeks before you start. Think, what could I have instead

Eg swop typical cereal for certified gluten free oats, either as porridge, or use to make your own museli

Lunch look at soups, or salads or gluten free crackers or oatcakes

Dinner has masses of choices. Fresh meat, fish, salads, all vegetables. You can make sauces with gluten free flours (look in the Free-from section at supermarket)

You just need to avoid anything with wheat, barley or rye.

Yes to begin with you need to read all labels, but you soon learn what's ok and what's not. There is masses more stuff clearly labelled as gluten free.

Ferritin is iron store. If you find taking iron tablets upsets you try eating liver once a week instead.

[Cree in reply to SlowDragon]

Oh I can manage liver once a week, I love it! I’m going to make a conscious effort to go gluten free and see the results. And dairy, I love cheese and Greek yogurt, do I need to give them up??

[SlowDragon Administrator in reply to Cree]

Many find just gluten free is enough. Stick at it 6 months minimum, if it helps stay on it.

Suggest you try just gluten free first.

Ideally retest antibodies once or twice year, see if they are dropping. No point testing for 6 months.

[Cree]

Ferritin! That’s one I missed, I’ve not been taking ferritin!

[Cree in reply to Cree]

Ferritin would have been in my iron?

[Cree]

Thanks for your replies folk, much appreciated and ill try not get disheartened when the endo shrugs me off And will make a serious commitment to gluten free and see how things go x

[SlowDragon Administrator in reply to Cree]

Make sure to get copies of your results. Do not be fobbed off