Tested for Hashimotos..........finally! - Thyroid UK

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Tested for Hashimotos..........finally!

Shazy-B profile image
Shazy-B
•33 Replies

Hi it's been a while since I've been here as I've been quite well 😊 However I'm struggling with my weight which I'm finding really depressing as I'm trying so hard. I've gained over 2 stone in the past couple of years and 7lbs of that has been since I had my gallbladder removed in July. Finally after being hypothyroid for 14 years my GP has agreed to test for anti bodies for Hashimotos (alleluia) but I'm wondering if my meds will interfere with a true result and give a false reading of my TPO? I take 100mcg of Levothyroxine daily.

Thanks for any advice 😊

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Shazy-B profile image
Shazy-B
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33 Replies
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Hello Shazy-B

Replacing missing thyroid hormones will help suppress Hashimotos attacks but your TPOAb's will still be present as once activated, are with you for life.

The aim is to get the antibody level as low as possible and so reducing inflammation in the body. Inflammation can bring about aches and pains, predisposes more readily to further auto immune disease and makes weight loss difficult.

Body weight is influenced by not only the amount of calories we eat and the energy we expend but also thyroid & other hormone levels, proteins and neurotransmitters.

Due to cortisol issues caused by our hypothyroidism, many of us suffer insulin sensitivity or resistance.

Leptin is a hormone that is made in your fat cells and involved in maintaining body weight. It also controls and influences the immune system (similar to inflammatory cytokine lL-6 (proteins) ) often elevated in Hashi sufferers who have excess accumulated fat around the middle. More fat means higher leptin which can result in leptin resistance which means your metabolism and fat breakdown (lipolysis) will slow.

Low thyroid hormone levels (high TSH) will mean a low basal metabolic rate making it difficult to lose weight. Excessive dieting will deplete muscle tissue, encourage leptin resistance and actually cause your body to burn even fewer calories and so possibly gain weight.

Blood sugar spikes can be avoided by cutting out refined sugars and simple carbohydrates such as white bread, pasta and foods that your body easily converts to sugar. Eat foods that are low on the glycemic index and always include protein, fats, carbs and plenty of fresh veg. I have protein with every meal and use whey or pea protein powder in smoothies for snacks in between. Protein takes longer to digest and will balance sugar levels in your foods preventing an insulin rush.

Low vitamin D has also been associated with both insulin and leptin resistance and is an important anti-inflammatory that is often low in people with hypothyroidism. By ensuring all nutrients are optimal you give thyroid meds a better chance of absorbing and converting.

Many members including myself have found a gluten free diet to be beneficial in reducing high antibody levels.

If you post any recent thyroid hormone blood test results complete with ranges (numbers in brackets) members will comment.

Flower

Leptin explained

dearthyroid.org/2010/07/01/...

Vit D & insulin resistance.

ncbi.nlm.nih.gov/pubmed/215...

High TSH encourages body fat

ncbi.nlm.nih.gov/pubmed/188...

Gluten-thyroid connection

chriskresser.com/the-gluten...

……………………………………………………………………………………………………………………

Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

……………………………………………………………………………………………………………………

Taminaone profile image
Taminaone• in reply to

Flower 007, this is all so interesting is the test for Hashimoto the thyroid peroxidase antibodies test? I had that done privately in Oct and it came back as:-

122.0 IU/ml (consistent with autoimmune thyroiditis),

negative <60

equivocal 60-100

positive >100

TSH 2.880 mU/L (0.270 - 4.200)

Free T4 15.55 pmol/L (12 - 22)

Free T3 4.3 pmol/L (3.1 - 6.8)

Been called to GP before next prescription. Reading Suzy Cohen's book is there any point asking for increased dosage of 75mcg Levo if it is not reaching all my cells and I am what she calls 'thyroid sick'. Have I replied to omuch and should I have written this as a post? I am confused.

What action can one take if one has Hashis?

So grateful for this forum.

greygoose profile image
greygoose• in reply toTaminaone

You are Under-replaced. Your TSH is too high for someone on thyroid hormone replacement - should be one or Under.

Your FT4 and FT3 are below mid-range. Therefore your T3 is too low for you to lose weight. You need an increase in dose.

Increasing your dose enough to suppress your TSH could very well help reduce antibodies. People also find it helpful to adopt and gluten and/or dairy-free diet. But, as far as doctors are concerned, there is not treatment or cure for autoimmune diseases.

Taminaone profile image
Taminaone• in reply togreygoose

Greygoose, thanks so much for your reply. I remember you are familiar with Suzie Cohen's book.

I do avoid gluten as much as possible but have not gone the whole hog yet. I do take goats milk and butter. I had a hair analysis done and have just looked at it again and they note I am deficient in Iodine, CoQ10, Iron and Zinc. Am taking zinc supplements. Hesitated getting iodine supplement but will get a little bottle from one of the good nutritionists. I think one has to take selenium along with it. I have read so much that I get so confused. (I am not the brightest). Yes, I thought the GPs don't acknowledge a cure for Hashi. I am going to have to talk a GP trainee at the sugery rather than either of the two principals there, into upping my dose. If the experienced doctors don't know much the trainee will know even less but I could perhaps insist with a trainee. But I may have to buy my own.

My support group leader has given me some tips on what to say when I go to the surgery with my latest private test results, can you suggest something to say for me please? . How do I explain to them that though TSH and T3 T4 within normal limits that does not mean they are.

Grateful for your help Greygoose.

greygoose profile image
greygoose• in reply toTaminaone

I really would not advise you to take iodine, especially not as you have Hashi's.

Even if you are iodine deficient, supplementing iodine should only be undertaken with a specialist doctor who know what he's doing. And they are very few and far between!

Besides, you aren't hypo because you are iodine deficient, you are hypo because you have antibodies which are attacking and destroying your thyroid gland, so that it can no-longer make sufficient thyroid hormone.

Whether you take iodine or not, that process is going to continue, and taking iodine might just speed it up.

You'd be much better off concentrating on the iron deficiency, which is much more important - you cannot use the thyroid hormone you are taking if you are deficient in iron. CoQ10 you can easily buy and supplement yourself.

I really am not the best person to advise on how to talk to doctors. I am far too confrontational! Either that, or I just clam up and glare at them. lol Diplomacy is not my forte! I'm sure your support group leader is far better at advising you than I.

Taminaone profile image
Taminaone• in reply togreygoose

Greygoose, thank you for that info! I will leave iodine supplementation. Thank you for the tip on getting iron up to scratch. Wish I had written earlier but was trying to understand my problem myself but I am so grateful from your explanation. My folate was normal as of June 2014. Would I be right in thinking that no point in upping the dose of Levo until my iron is normal? Or maybe I should go for it and store the excess tabs up till I feel I need ready to take them.

I am not diplomatic either! And must stop myself from talking down to the medic indicating I know more about this than he does!! You catch more flies with honey than vinegar! But still difficult if one calls a spade a spade.

I feel much happier now you have explained my situation to me. I am off to see Lady In A Van at the flicks a happier person.

Thank you again.

• in reply toTaminaone

Taminaone,

gg has already given you excellent advice.

Levothyroxine is a synthetic version of T4 and is converted into T3 in your body.

Since levothyroxine already contains iodine, you do not need to take additional iodine to treat hypothyroidism.

Any extra iodine you consume would not be incorporated into new thyroid hormones because your thyroid’s function is being replaced with levothyroxine.

Enjoy Lady In A Van.

Flower

Taminaone profile image
Taminaone• in reply to

Very grateful Flower for that very clear info. Film recommended for laughs. I live and learn from this forum.

greygoose profile image
greygoose• in reply toTaminaone

You're welcome. Enjoy the film! :)

Taminaone profile image
Taminaone• in reply togreygoose

Just catching up today 25th on missed messages. Film was very good, escapism, now back to the thyroid!

greygoose profile image
greygoose• in reply toTaminaone

I thought it was a true story.

Taminaone profile image
Taminaone• in reply togreygoose

Yes it was - at least 'mostly true' it said at the beginning of the film.

joyce59 profile image
joyce59• in reply toTaminaone

hi taminaone were you also tested for Tgab? i had the test for both my Tgab was 412 (range0.0-115.0) and my Tgpo was 240 (range0.0-59.0)

greygoose profile image
greygoose• in reply tojoyce59

I Don't really think she needs the TgAB tested, because the TPOab was positive. She has Hashi's, so doing another test won't add much information to that. The problem is that whichever test is positive, doctors Don't react to it. :)

Taminaone profile image
Taminaone• in reply togreygoose

Greygoose, thank you for clearing that TgAB test query, whatever that is!

greygoose profile image
greygoose• in reply toTaminaone

:) It's just another sort of antibody.

Sometimes people have high TPOab and sometimes they have high TgAB; and sometimes they're both high. But in all three cases, the person has Hashi's.

However, the NHS, in its wisdom, has decreed that thou shalt only test the TPOab, thereby missing an awful lot of cases of Hashi's. Not that they treat it, anyway...

Taminaone profile image
Taminaone• in reply tojoyce59

No, never heard of that. I think I now have to concentrate on getting my zinc, iodine, iron (got trace thalassaemia) so always appear anaemic and CQo10 up. Folate and B12 was normal last June. Hopefully that will help cure me and get the thyroxine into all my cells.

Thank you for reply.

greygoose profile image
greygoose• in reply toTaminaone

What do you mean by 'normal'? If the B12 was Under 500, then you are in danger of neurological damage. Optimal is 1000.

Taminaone profile image
Taminaone• in reply togreygoose

Serum vitamin B 12 it was 375ng/L (187.00 - 883.00

Serum Folate 7.4 ug/L (3.10 - 20.50 ug/L)

will get an FBC when I go. How can I up the B12 myself? Supplement?

I have noticed brain fog for few months now but always manage to bring the name or thing I have fogotten back to mind, reassuring myself I have not got Alzheimer's. My mother was hypo and we gave her the tabs at the wrong time - outside box 'take as prescribed' did not mention on empty stomach. There was thinking that Alzheimer's could be caused by hypothyroidism. Need to hurry to get my level up befor that sets in.

Thx again

greygoose profile image
greygoose• in reply toTaminaone

Well, I think that explains your brain fog! That B12 is way too low.

If I were you, I would take 5000 sublingual methylcobalamin daily for a few months. With that, take a B complex containing methylfolate - not folic acid - and that should bring your folate up.

A lot of your symptoms could be due to those low Bs. :)

Taminaone profile image
Taminaone• in reply togreygoose

Greygoose I will follow your advice re B12

If I am offered FBC by GP which tests do you think I should go for if they allow it, please. I am just getting organised for my appt on Wed Dec 2nd.

I think the GPs jaw will drop when I spout all that I have digested from you, Flower and my Support Group Leader along with the Pulse article I will give him/her. Thx so much.

greygoose profile image
greygoose• in reply toTaminaone

The most important are

TSH

FT4

FT3

vit D

What do you mean by you think you ought to concentrate on getting your iodine up - in a response above. Are you supplementing iodine? That really isn't a good idea.

Taminaone profile image
Taminaone• in reply togreygoose

sorry GG, my question yesterday was slipped in the wrong place. I have taken on board that iodine is in the Levothyroxine so not necesary to get extra. I just wondered if the GP next week says he will get a FBC, which tests do I want included but on reflection will ask to deferFBC till I take the B12 supplement you advised for a few months as well as the Spatone for iron.

I will get my own TSH, T3. T4 tests as NHS won't do that.

Sorry for confusion

Many thanks

greygoose profile image
greygoose• in reply toTaminaone

I Don't understand why you would want to defer the FBC until you've been taking B12 for a few months.

Once you've started supplementing the B12, there's no point in testing again because you won't get a true reading.

Iron, yes, you will want to know where you are with your iron, so as not to take too much. But there's no reason why you can't get your thyroid labs done in the meantime.

Taminaone profile image
Taminaone• in reply togreygoose

Ok GG . I just got my private thyroid tests done in October this year so will wait till January/Feb before getting them done again.

• in reply tojoyce59

joyce59,

It is unlucky you have been tested positive for both TPOAb & TGAb. Lots of GP's don't bother testing TGAb.

Are you managing your symptoms ok?

Flower

Shazy-B profile image
Shazy-B

Hi everyone thanks for all your responses. Out of curiosity does anyone know if Levothyroxine is gluten free?

• in reply toShazy-B

Hello Shazy-B

The link below lists ingredients found in all differents branded Levo.

thyroiduk.org.uk/tuk/treatm...

Flower

Taminaone profile image
Taminaone• in reply to

Shazy-B, thank you for the link. The thyroid uk website is truly wonderful and I do recommend membership. It is so knowledgeable. Have not yet checked their list of ingredients found in all different branded Levo but have made a note to check later.

Taminaone profile image
Taminaone• in reply toTaminaone

Flower007 it is you who I should thank re the ingredients not Shazy - my brain fog - lack of concentration!

• in reply toTaminaone

Yes Taminaone,

I also recommend membership of Thyroid UK.

It is great resource and support and the membership costs are soon regained in supplement discounts so brilliant value too.

Flower

MrsRaven profile image
MrsRaven• in reply to

Very useful link, Flower. Thank you. Not wanting to hijack the thread, but are there many different forms of synthetic levo?

• in reply toMrsRaven

MrsRavan

I am not very clued up on the different forms of Levo but many members are so just repost your question as a new post.

Flo

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