Recent Hashimotos diagnosis : Just been diagnosed... - Thyroid UK

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Recent Hashimotos diagnosis

kaz04
kaz04
49 Replies

Just been diagnosed with Hashimotos Thyroiditis with my anti-TPO levels at 1300, My TSH is 0.82 and my free T4 is 22.4, Completey baffled by it all and my Dr said my medication can stay the same currently take 200 levothyroxine, extremely tired and having palpitations and dizzy spells (which I've never had before) bit scary, mentioned to my Dr and he gave me anti sickness tablets. Just wondered if anybody else has these symptoms,

49 Replies
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Nanaedake

200mcg of levothyroxine is a lot of levothyroxine unless you are very large? it's possible you may have an absorption problem which is quite common with Hashimotos thyroiditis. Has your doctor tested your vitamin levels, Vitamin D, B12, folate and ferritin? If not, I would advise you have these tested. In addition, consider testing for Coeliac disease which quite often co-exists with autoimmune thyroiditis.

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kaz04
kaz04
in reply to Nanaedake

Thanks for the reply I'm average size 14/16 so not to large , not had vitamins etc tested not due an appointment for another 3 months so going to stand my ground and insist they are done, as my Drs only like to test for the basics

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Nanaedake
Nanaedake
in reply to kaz04

gut dysfunction often accompanies thyroid disease. The PPI's doctors prescribe for gut dysfunction are likely to make matters worse in the long run and often prevent the patient and doctor from looking into the real reason for the gut dysfunction. As you are an average size and on a highish dose of levothyroxine, it suggests you have an absorption problem, hence the need to rule out gluten intolerance and vitamin B deficiency.

As you have Hashimotos thyroiditis, be careful to follow good advice about supplements. SeasideSusie and SlowDragon can point you in the right direction. Definitely don't take iodine unless tested and proven deficient and under the direction of an expert medical professional with a specialism in thyroid care. Multivitamins are to be avoided if they contain iodine, iron or B vitamins that are not in their methylated forms.

Best thing you can do is get those vitamin levels tested and I wouldn't wait 3 months unless no option. Thyroid UK has good information on their website for reliable laboratories that test bloods.

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greygoose

You probably have a conversion problem, and your FT3 is low. But, doctors don't know anything about conversion and T3. If your doctor won't test for it, you would be well advised to get your FT4 and FT3 tested privately, so that you can see how well you convert. Low T3 would explain your symptoms.

Just out of interest, how do you take your levo? On an empty stomach, leaving at least one hour before eating or drinking? Do you take any other medication or supplements at the same time?

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kaz04
kaz04
in reply to greygoose

Thanks for the reply I now take my levothyroxine at night and a multivitamin in the morning with a ginger supplement, My Dr is very bad at doing tests only like to do the basics, Have considered going private, Have my next blood test in 3 months if no joy , private route it will have to be, Thanks for the advice.

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greygoose
greygoose
in reply to kaz04

You're wasting your money on a multi-vit, you won't get anything much out of it. Far better to get your vit D, vit B12, folate and ferritin tested, and just take what you need, and as much as you need.

So, you take your levo at least 2 hours after you last ate?

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kaz04
kaz04
in reply to greygoose

Ah ok never realised the multivitamins were not worth taking, Yes I take my levo around about 10-10.30pm and we eat around 5-6pm , tried taking them in the morning but timings are never good evenings suit me better, Is it ok to take pm

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greygoose
greygoose
in reply to kaz04

It's fine to take pm. Whatever suits you is best. :)

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Thinkoutsidethebox

My dr whos conventionally and alternatively trained tells me to take a multivitamin and mineral supplement. I had to add on extra vitamin b12, vit D and magnesium etc to correct deficiencies though.

They say if your raising a b vitamin like b12 for example ,then you should take either a b complex or multivitamin with all the b vitamins in it to keep them in balance. I know minerals are supposed to be in balance too. I think that might be why my drs telling me to take a multi vitamin and mineral supplement greygoose ?

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Most doctors know nothing about nutrition, and want to save you and the practice money but not prescribing anything and telling you to buy something cheap. Most multi-vitamins are made of cheap ingredients and contain things like iron and calcium which prevent the absorption of other ingredients. A professional quality B complex would be what you need to balance B12, not a multi vitamin. Most people get too much calcium and not enough magnesium from their diets, so a multi-mineral would put the levels even more out of balance, plus they are usually the least bioavailable versions like oxides and carbonates. Probably no K2 either.

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My doctor is a functional doctor so she studied conventional and functional medicine. She knows more than your average doctor about supplements and nutrition. She doesnt let her patients have dairy as it knocks the calcium to magnesium ratio. Therefore, a small dose in supplements is fine for us. She also recommends a good brand to buy the multivitamin from (biocare).

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Biocare are good (I hope she gives you a discount code - many functional doctors have one). But the whole multivitamin concept is just wrong - you need what you need and it is individual.

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I think it depends on how good your absorption is. A lot of people with chronic disease have stomach problems. This could affect the absorption of a variety of nutrients. Low stomach acid for example could create multiple deficiencies.

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grafkimber

So what mineral brands would you recommend?

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greygoose

If your multi-vit contains iron, it will block the absorption of all the vitamins.

And, if it also contains calcium, you won't be able to absorb either the iron or the calcium, either, because they will bind together.

A multi-vit will never contain enough of anything to deal with a true deficiency, but will probably contain things you don't need, like iodine, calcium and copper.

99.9% of multi-vits contain the cheapest, least absorbable forms of the vit/min. Like magnesium oxide.

Yes, If you're taking B12, you also need to take a B complex, to keep the Bs balanced because they all work together. But, just the Bs.

If you are taking vit D3, you also need to take vit K2 - MK7 and magnesium.

I'm not sure that either conventional or alternative medical training includes nutrition, judging by that advice!

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Thinkoutsidethebox

It depends whether my doctor deem's the studies on these things to be credible. Ive shown her studies on pubmed etc and shes picked holes in the study. I suspect whereever this info has come from she hasnt put much weight on it.

My dr knows multi vitamins dont deal with a lot of deficiencies. Your right.

Biocare doesnt contain copper or iron and doesnt use magnesium oxide. However, she gives us another mineral supplement to take as well that contains iodine, copper and iron. We take biocare in the morning and the rest at lunch and dinner. Maybe seperating them solves the problem? That may be why she still gives them. Its maybe that or the science issue.

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greygoose

And did she test your copper, iodine and iron before prescribing them? None of those should be taken unless you are deficient, because excess copper, iodine and iron are toxic. Hypos are usually high in copper, anyway, they don't need anymore. Iodine is contra-indicated in hypothyroidism.

And, if you have to take iron, it should be at least two hours away from everything except vit C.

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Thinkoutsidethebox

Yes she did test them. She said it's not true that iodine in the dosages available are toxic though. She did show me studies where mega doses were used to kill infections. Most people dont take doses like that. She only gives up to 37mg if you have toxic metals or a bad infection. I dont have hashimotos though. Not sure what her view on iodine and hashis is.

She doesn't give high dose copper. Just 1mg. She said that amount is just enough to prevent deficiency.

I completely understand if you and other people are wary but I do feel comfortable with her knowledge and experience of the studies. I actually read myself the majority of scientific studies werent accurate. if I can find the article I'll show you it. That's why I'm glad she's managing me because I know I can't believe everything on the internet. Even the reputable sources have been called into question. ncbi.nlm.nih.gov/pmc/articl...

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greygoose

I didn't say iodine was toxic. I said excess iodine was toxic. You need a certain amount, but not more. People think that excess is excreted, but I know from personal experience that that isn't always the case. And, given that you are getting iodine from your thyroid hormone replacement, taking excess iodine is very easily done. Mega doses may have been used to kill infections, but they weren't taken day after day after day, were they. That's not a very good argument of iodine supplementation.

You are highly unlikely to suffer from copper deficiency if you are hypo. You are far more likely to suffer from zinc deficiency.

I also know we can't trust anybody, these days, because everybody has their own agenda. We can only really trust our own experience.

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Thinkoutsidethebox

Hello! Sorry if there was a misunderstanding. No the doses used to kill infections was very high and not for continuous use. Not as far as i am aware. Ive currently got chronic infections and heavy metals. My dr told me iodine was multi purpose and would help both. God knows how long ill have to take a decent dose.

I think we are all different so you really need to go by how you feel and go by what your doctor advice is.

Low stomach acid apparently does affects the absoption of copper, calcium, zinc, b12 etc. It depends if your low or high. Ive been low. Boo!

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greygoose

I would never even ask a doctor for advice on nutrition! They just don't know anything about it.

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Thinkoutsidethebox

I mean my functional doctor. No not the conventional only doctors. I agree lol

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25joyce
25joyce
in reply to kaz04

Hi don’t wait 3 months go private and find a functional Dr

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Thinkoutsidethebox

Good advice. Thats what i did . Its expensive though. Boo!

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kaz04
kaz04
in reply to 25joyce

Have discussed going private with my husband and he totally agrees that this is the best route, now to research a private clinic.

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kaz04
kaz04
in reply to 25joyce

Have discussed going private with my husband and he totally agrees that this is the best route, now to research a private clinic.

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rosserk
rosserk
in reply to kaz04

Why don’t you get all your blood tests done through medicheck and then take the results to your doctor rather than looking at a private clinic? Just because you go private it doesn’t mean you’ll get someone who knows what they’re doing. Must people have the following tests as a good all rounder. You could have the test done and the results in a couple of days.

medichecks.com/thyroid-func...

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kaz04
kaz04
in reply to rosserk

Thanks for the advice, Have never heard of medicheck will look into it.

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rosserk
rosserk
in reply to kaz04

That’s what most people on here do because their doctors won’t do all the relevant tests. I did a medicheck test and posted the results on here and the ‘experts’ (and make no mistake they are experts) advises me what to do. Without their advice I would be very very sick.

The link I posted is a great starting point. 😀

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kaz04
kaz04
in reply to rosserk

Just had a look did you do the complete test the ultra bit or the regular one

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rosserk
rosserk
in reply to kaz04

Hi I did the ultra vit

Have a look at my previous posts and you will see my results and the comments.

I was so sick before, had no idea I had Hashimoto and not a clue about vitamins and diet but the guys on the forum guided me and I honestly think I’m getting somewhere.

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kaz04
kaz04
in reply to rosserk

Thanks for the advice, will take a look, so glad your getting somewhere x

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SlowDragon
SlowDragonAdministrator

Low vitamin D, folate, ferritin and B12 are extremely common. Can you add recent results and ranges if you have them, or insist politely that GP tests if not been done

Also request a coeliac blood test.

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)

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

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

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kaz04

Thanks for the reply, Have looked into a gluten free diet, due routine blood tests in 3 months and will ask for my FT3 and FT4 to be tested, if no joy will seek a private test, Thanks fo the advice

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Mupppet

I have Hashimoto myself and when it first was not diagnosed I had such strong symptoms. You should see a endocrinologist. Please ask your GP for an urgent referral. GPs are just no specialists and the matter is sometimes more complicated. Dont let him just treat your symptoms with sickness pills. That doesn't solve the problem. I feel for you!

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kaz04
kaz04
in reply to Mupppet

Thanks for the advice think I'm going to seek private blood tests as feel my Drs are failing me,

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Mupppet
Mupppet
in reply to kaz04

You will need to be seen by a endocrinologist. Ask for a referral. He will know what tests need to be done and how to interpret the results.

Your intake of 200 is very high but you still have major symptoms that clearly indicates a referral in my point of view. Please insist on a referral.

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Mouldyoledoll

Did they do your FT3 ?

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kaz04
kaz04
in reply to Mouldyoledoll

Not that I know of 😢

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MMAndrea52

Lower your dose, youl feel miles better 😊

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kaz04
kaz04
in reply to MMAndrea52

Have thought about this but was worried it would do more harm than good 😢 Would just like to feel normal (if normal exists )

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Hashihouseman

Try less t4 and a small amount (7-10 microgram) of t3 perhaps as desiccated natural thyroid, which will have some t4 so you’d need even less levothyroxine. Too much levothyroxine, t4, can have the opposite effect to that intended because of its negative feedback and if you’re anything like me it’s not always tolerated in itself, particularly in large all at once doses. Dont worry so much about maximising absorbtion as much as taking large doses all at once, maybe split bedtime and waking. GP Doctors are very often woefully ignorant about thyroid issues. Some endocrinologists aren’t much better! Levothyroxine delivers almost instantaneous amounts of free t4 that the healthy thyroid secretion wouldn’t and all through the gut wall, which isn’t natural either! What the gut makes of all this free t4 is anybody’s guess..........

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rosserk

By any chance is the sickness tablet your Doctor gave you Omeprazole? I think that’s the go to medicine for anyone with unexplained symptoms of sickness and reflux. Think I read it was a bad idea to take them when you were taking Levo but I could be wrong! Hopefully someone will correct me if I’ve got that wrong 😜

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Hellonwheels

They are bad for any hypo to take, considering it's an acid reducer, and most suffer from low acid...

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kaz04
kaz04
in reply to rosserk

The sickness tablets are Prochlorperazine 5mg

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rosserk
rosserk
in reply to kaz04

Think they work in the same way, by neutralising acid. 😀

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Angel_of_the_North

Can cause low blood pressure (dizzy spells are part of that) and kidney problems (and depress central nervous system, so make you feel foggy and slow your reactions), GInger is good for nausea for many people.

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kaz04

I do take a ginger supplement every day but I don't

Feel they do much

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Angel_of_the_North

Try chewing slivers of actual ginger root or sucking ginger sweets (not so good because of sugar). I think the chewing/sucking helps. See if you have Meniere's disease, esp if your hearing and balance are sometimes bad

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