Looking for some help and advise ( Hashimoto's ) - Thyroid UK

Thyroid UK

120,863 members140,787 posts

Looking for some help and advise ( Hashimoto's )

Laiagc profile image

Hi all!

I would like to share my story to see if you could shed some light. I’ll try to be as brief as possible!

I’m 38 and I've been suffering from Hashimoto's for 15 years and half of them I was on a wrong medication / not well diagnosed.

2 years ago, I found a good medical herbalist that helped me to improve a lot, especially my hormonal balance, ovaries and breast cysts. They are all gone now and have a regular period.

My Tsh, T4, T3 in range except for my antibodies. I've been on a healthy diet mostly gluten and dairy free ( Cow's basically). At the moment I'm taking selenium, zinc, VitD for my thyroids and my levo ( Eutirox ) is on 100 from Monday to Friday and 112 on weekends.

Back in May, I started to have my old known symptoms: fatigue, joint paint and inexplicable and fast gain weight ( clothes from last summer don't fit )also mood swings.

My blood tests results then: TSH 3.71mIU/L T4 1.06ng/dL T3 2.92 pg/ML TgAB 168,40 U/mL ( <60 ) TPO >1300 UI/mL Endo, obviously, said I was ok . My vitD 25,41 ( very low I’d say considering I keep taking VitD. somehow I'm not absorbing it well ) My previous results 6 months earlier were better.

To round it off, thanks to my medical herbalist, I took a CDSA test and found out I'm not digesting well; protein, fat and vegetal fibres. I have candida parapsilosis and my Beta-glucuronidase enzyme is high. I took allicin and Berberine for a month, my stomach bloating improved. I added Iodine to test if I was feeling better, Betaine to increase stomach acid and Calcium D-Glucarate for my liver. Ashwaghanda to reduce stress and anxiety

This last month I ate some gluten to test intolerance markers and shifted my levo intake from morning to night

So, This week retested and got the following:

TSH 3,72 μUI/mL

T4 0,91 ng/dL.

T3 ( they said it was irrelevant to test and didn’t do it! )

TgAB. 13,1 UI/mL ( <4 )

TPO 1.204,1 UI/mL (<6)

VitD 48,70 ng/mL

New things: My Eosinophils are slightly high which suggests an infection or allergy and my GAMMA-GT also slightly high. All Gluten intolerance markers are negative.

Is not the first time that this happens to me but I thought that I was in control now with my new doctor, diet, supplement support. I was improving so much.

I feel like I’m living in a body that is not mine, old and that I have no control whatsoever over it. It’s very frustrating. I don't know what else to do. I don't have an endocrine of trust and don’t know what to eat anymore. My medical herbalist lives in Kent, I’m based in Barcelona. So In the meantime, I went back on a strict AIP again to see if it helps with this weight that I can’t control and to improve my energy levels and mood, feel kind of depressed at times

I don’t know why I’m symptomatic or what’s the cause. What happened in between when I was doing so well? I have to mention that I used to workout 4 days a week, 2 weight lifting and cardio, 2 pilates. And instead of feeling better I bloated. So I’ve lost any motivation.

I also read about dissected thyroid but not sure how it works or if it’s going to help me, also a little scared of the change of synth levo to that without any supervision.

Just wanted to share and ask for your opinion, just in case I’m missing out something. healthunlocked is a bless and your stories help me too.

Thank you very much for reading this!

Laia x

19 Replies

When your TSH went up to over 3, what you needed was to increase your dose of levo - can't comment on any other levels, because you haven't put the ranges.

What you didn't need was iodine! And you probably didn't need ashwagandha, either, which has more than likely reduced your cortisol.

Iodine really isn't recommended for hypos, unless your hypothyroidism is caused by iodine deficiency. Did you have it tested before supplementing? Do you know that you are getting an extra dose of iodine from your levo? 100 mcg levo contains 65 mcg iodine, which is detached from the hormone molecule and recycled in your body. Plus the iodine you get from your food. Iodine is not used up like other micro-nutrients, but recycled, plus your thyroid is not using as much as it used to, so you probably have a lot of excess iodine in your system, now.

Besides, you have Hashi's, and iodine can make Hashi's ten times worse.

greenmedinfo.com/blog/iodin...

So, when searching for solutions, I would start there, if I were you. :)

Laiagc profile image
Laiagc in reply to greygoose

Hi!

Thank you very much for your response!

My herbal doctor suggested to try Iodine as she said some people were feeling when supplementing it :/ I thought I was tested once and my levels were ok, but can’t find that blood test now. Anyway, I started taking Iodine and Ashawaghanda around mid-June after May's test results and all the symptoms I already had. I will check it out of course and probably drop it! Ashawaghanda is contraproductive as well?

my blood tests in May were: ( range in brackets ) Endo said I was fine so didn’t mention to increase.

TSH 3.71mIU/L ( 0.55-4.78 mIU/L). Now it’s 3,72

T4 1.06ng/dL (0.8- 1.9ng/DL) Now it’s 0.91

T3 2.92 pg/ML ( 2.28-4.23 pgML ) Now I don’t know

TgAB 168,40 U/mL ( <60 ) Now it’s 13,1 UI/mL ( <4 )

TPO >1300 UI/mL NOW it’s 1.204,1 UI/mL (<6)

Tsh is mostly the same… T4 is lower now and antibodies are slightly lower

SlowDragon profile image
SlowDragonAdministrator in reply to Laiagc

Iodine and Hashimoto's is definitely not recommended

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

Your TSH is too high. Aim of thyroid replacement hormone is to take high enough dose to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range

Essential to test vitamin B12, folate and ferritin too

Laiagc profile image
Laiagc in reply to SlowDragon

In May my B12 was 264,00 pmol/L ( 138 - 652 ) and my Ferritin was 33.73 ng/mL ( 10 - 120 ng/ML) Now My ferritin is at 51,30 ng/ML and B12 don't know because they didn't want to test.

Then you suggest a should increase my dose? I'm at 100 and 112 on the weekends. For what you say then my T4 is way worse...

Thank you very much! I will definitely quit Iodine.

greygoose profile image
greygoose in reply to Laiagc

Ashwagandha will lower cortisol. If your cortisol was already low, then it will make things worse. Have you had your cortisol tested?

If you had an iodine test and you weren't deficient, then the last thing you need is iodine. This is the problem with herbalists, naturopaths, homeopathists and various other alternative practitioners, they believe that if you have a thyroid problem all you need to do is throw iodine at it. And, it's just not true. You only need tiny amounts of iodine daily - it's a MICRO-nutrient, not like iron or magnesium. Iodine is just one of the ingredients of thyroid hormone. If you try to make a cake with just eggs, you end up with an omelette. If you try to make thyroid hormone with just iodine, you end up with all sorts of other problems. It's not the solution, and I don't know what one has to do to get that through to them.

You are hugely under-medicated, and what you need is an increase in dose, not all this - dare I say it - snake oil. OK, iodine and Ashwagandha have their place, but it's not here. You have Hashi's, so you need your TSH down to zero. Over three is just too high.

Laiagc profile image
Laiagc in reply to greygoose

It's so great to hear from other experiences and knowledge. My herbal doctor has been amazing but it's true she's not an expert with thyroids. She managed to control very well other symptoms and found my digestive problems. And I feel very lonely with endos. For them, as long as you are in between the range "it's fine". Whish I could find a good one in Barcelona. Ok, I will follow your advice, thank you very much! If I'm at 100 now and on the weekends at 112, what dose would be appropriate to take now? 112 every day? 120?

greygoose profile image
greygoose in reply to Laiagc

It's not just Barcelona, most of us wish we could find a good endo anywhere in the world!

I'm sure that herbal remedies are great for a lot of things - well, I know they are - just like homeopathy. But, they don't have solutions for thyroids, and try to fill the gap with iodine. I had exactly the same thing from a homeopath. It doesn't work. And, the majority of endos are diabetes specialist who know next to nothing about thyroid. It's an international problem. Which is why forums like this exist, so that we can help each other, based on our experiences. And, I have had first-hand experience with iodine. I wouldn't recommend it to anyone. So, we're very often better of without these doctors who only tend to make us worse, not better.

120 mcg is a strange dose. What size pills do you have? I would have thought 125 mcg would be easier. :)

Laiagc profile image
Laiagc in reply to greygoose

ha! yes, you are right. The next one is 125. I don't know; I assumed there must be a 120 if there was a weird dose as 112 XD. ( from the brand Eutirox ) Funny enough, here in Spain there's no other alternative of Levo, only that brand. This one has cornstarch and lactose.

Shall I keep taking it at night time or should I switch it back to morning as I was doing before? And yes, the world needs better Endocrines! Thanks again!

greygoose profile image
greygoose in reply to Laiagc

You sure it's not 112.5? That would be a half 25, and increases/decreases are usually done in 25s.

It's the same in France, we only have one brand of levo, and people are having a lot of trouble with that, at the moment, with no alternative! They tried to make it lactose-free, like Teva - and I'm sure you've heard about the problems with that! Seems that lactose-free levo just doesn't work.

Do you feel better taking it at night? If so, stick to it. It's a very personal thing. Personally, I don't feel any difference, but some people do. You should do what's best for you. :)

Laiagc profile image
Laiagc in reply to greygoose

Honestly, I feel the same but any step you take it makes you feel unsure. 😅I changed it this summer to make sure no food nor coffee was interfering in the absorption because sometimes I can't wait for 1h to eat. But I'm not absorbing very well some food and nutrients anyway.

I double checked to make sure, but it definitely is 112. Or that's what the leaflet says. Mystery!

Thanks!!

greygoose profile image
greygoose in reply to Laiagc

In that case, it would be better to continue taking it at night. I know it's difficult, some mornings, to wait an hour. :)

Laiagc profile image
Laiagc in reply to greygoose

logistics! ;) thanks for your help

greygoose profile image
greygoose in reply to Laiagc

You're welcome. :)

There's information about supplementing with vitamin D in the Vitamin D Council plus on previous posts here but basically, you need to supplement with a soft gel D3 and take with K2-MK7 and magnesium, as this will help direct the calcium into the bones, and not the soft tissue and arteries. Perhaps a spray version will help you absorb the D3 better?

Laiagc profile image
Laiagc in reply to Highland49

I do take Vitd3+k2 and I spray magnesium oil as well. D3 in oral spray? Haven't find any. Any recommendation?

Highland49 profile image
Highland49 in reply to Laiagc

Others have mentioned the BetterYou vitamin D spray but I've not used it myself.

Foxtrot89 profile image
Foxtrot89 in reply to Laiagc

Laiagc Highland49 I use the Vitamin D spray by BetterYou and would highly recommend it :) I use the 3000IU one.

Such interesting reading. I’ve just been diagnosed with hashi (my own private test) and only because of this has GP referred me at last to an endocrinologist. Wait list to February though! I showed the GP a family tree of my autoimmune family and he called the biochemist lab as was shocked (5x hashi women, 1x Lupus, 3 x Aspergers boys, bowel cancer, bladder cancer, gout, psoriasis, I’m a reflexologist so all about the hormones and controlling the pituitary master gland. I want to study and specialise in hyper and hypo and hashi as I think it’s very undiagnosed and not understood. Anybody know where I could train to specialise please?

Hi! I don't know anybody but just want to encourage you to do it. The world needs more professionals like you :)

You may also like...