Hashis - will I ever get a diagnosis - anyone tried Izabella W protocol?

[Bambini83]

I wonder if anyone has followed the full Izabella Wentz protocol as laid out in the book and if it helped them?

I have ongoing health issues as yet undiagnosed. I have recently read Izabella’s book and am becoming increasingly convinced I have Hashis. I’m highly symptomatic and have been unwell for a long time (late 2019). I’m waiting for MRI to (hopefully) rule out MS for neurological issues (tingling/pins and needles which I’ve finally got a handle on myself due to low/borderline ferritin though this hasn’t come up enough, headaches, eye blurring).

I fear I’m heading for a CFS diagnosis - have seen so many GP’s who take no interest and just say post viral (this all started following a week long stomach virus). I found a lump in my neck last summer. Ultrasound identified two thyroid growths - non suspicious. One cyst, one nodule - FNA of cyst non concerning. At follow up appointment there was much confusion as it transpired I actually have 2 nodules. Thyroid surgeon adamant none of my symptoms were thyroid related. He has since retired and I recently had a call from a thyroid nurse who arranged TSH test and follow up ultrasound with (new) consultant appointment in a few months. She’s the only NHS person who hasn’t entirely dismissed the thyroid as having any part to play in it all.

I have a host of symptoms which come and go on severity - in addition to those already listed - always cold, dry skin, white coated sore tongue which feels swollen, dry puffy eyes, pruney fingers, general joint pain/stiffness, enlarged glands in neck which come and go. Dizzy/lightheaded at times despite normal BP. Occasional tinnitus, ears feel blocked. Sore neck.

I paid to see a private endo last summer as I had done medichecks bloods and had mildly elevated TPO antibodies and FT4 at very bottom of range despite low/normal TSH. She talked about potential CFS, possible thyroiditis, suggested testing for receptor antibodies to rule out Graves (which I did privately - negative). Suggested I do three monthly thyroid panels which I’ve done privately every three months since. TSH has remained low end and decreasing so far (last check was right at bottom of reference range). TPO antibodies remain mildly elevated at each test. She talked a lot about adrenal fatigue so I later did a salivary test which showed I had stage 1 HPA axis dysfunction.

Complexity added to situation as I have ‘suspected’ Covid this January and I seem to be doing worse since. I had diarreah/gastric upset, palpitations and shortness of breath. Horrible time which GP eventually decided could have been Covid after it would have been worth testing. Antibody test negative. I had started losing weight around this time too (I’m already thin and have non to lose) I did a private thyroid panel and FT3 was now slightly above range - Medichecks GP said that was no thing to worry about.

As far as I understand it some people may have hyper initiation of Hashis for a while before their thyroid fails. I’ve had some good advice from the Thyroid UK forum and suggestion that it could be Hashis but from what I understand I would need to go hypo for actual diagnosis/treatment. How long could that actually take?!

I’m planning to wait for my thyroid ultrasound then potentially arrange another appointment with private endo. Though I’m not sure what that will achieve for my right now as I’m not so far out of any range to medicate.

I’ve already taken steps to look at dietary changes. Cut gluten, dairy, caffeine, alcohol, reduced sugar and processed food some time ago. End of last year I paid to see a private nutritionist who put me on an eating plan and suggested an advanced gut profile which cost me and arm and a leg. This showed overgrowth of ‘bad’ bacteria and highest level of gut dysbiosis (leaking). She put me on high potency probiotics in Feb which seem to have caused me a bad reaction - have now started with itchy/burning skin as a new symptom. I don’t think her approach is working so I’ve decided to call that a day. I suspect I may have SIBO and/or that the specific strains have tipped me into histamine intolerance. I’ve come off all the supplements she recommended for now.

I literally feel I have no way to turn - GP is not interested in my latest symptoms. Believes my thyroid is a red herring. Said to take antihistamines for skin but they aren’t concerned. Weight loss they say they would only be worried if my BMI drops to 16 (currently 18). I fear I’m heading for CFS diagnosis and being left to rot. I’m no longer working as I can’t function. Have a little girl who is 4 and it breaks my heart that I can’t be the mum I want to be, the wife I want to be. I’m 34 and had hoped to have another baby and feel that slipping away from us.

I’ve been reading Izabella’s book and that is further convincing me that I could have Hashis. The approach to look at liver detox then adrenals then gut seems to make sense to me. I’m worried about losing further weight on the protocol and also of throwing lots of money at all the supplements she recommends. I’ve already wasted so much money that we don’t have to try and make sense of this situation/get my life back and getting no where. I feel I need to ‘fix’ or heal my gut as a priority.

I’ve thought about trying to see a Functional GP but I don’t honestly think we can afford that on top of the money they will charge to treat with supplements/further tests.

I’ve recently joined a long covid thread and I know there are various things people are trying diet/supplement wise but given the issues I already had/have I don’t know if those are the right approach for me.

I’ve tried to hard to work on stress relief/relaxation/mindfulness but it’s becoming increasingly hard to keep a grip on my anxiety levels and low mood. The longer this all drags on without any diagnosis or treatment to help the more the fear lingers that it’s something more sinister.

So if anyone has actually made it this far through my garbled lengthy post (apologies!) does anyone have any experience of trying Izabella’s approach and have they had any success? Thanks for reading if you made it this far!

[GentlyGentlyOhDear]

I haven't much advice but wanted to post to say it sounds like you're having such a battle getting to the bottom of it all.
I was diagnosed with hashis last year after having to have a thyroid nodule removed. They found my antibodies were in the thousands. Since the surgery to remove half of my thyroid and starting on thyroxine I have also had a range of symptoms including cold hands and feet/raynauds, stiff muscles and joints etc (also waiting for neurologist appointment for tingling and pins and needles! Endocrine consultant denied this was thyroid or ferritin related but I'm not sure).
Anyway I'm on week 2 of cutting out gluten and not noticing any difference. Will keep going with it and see how I get on. Can't face cutting sugar at the minute and I've also lost a lot of weight so don't want to lose more!
So not much advice but some solidarity anyway!

[Bambini83]

Hi @GentlyGentlyOhDear l, so sorry you’re having such a hard time of it too. Solidarity is much appreciated! It can feel very lonely at times.

I hope cutting gluten is helpful for you. I’ve read so many stories of people cutting gluten and having immense relief. Sadly not the case for me.

Honestly I don’t know if it is ‘just’ my thyroid having anything to do with it all for me...everyone I read of seems to have extremely elevated antibodies and mine are only 70 something each time I’m tested. Though I have read some people have Hashis with no antibodies at all. It’s all such a minefield!

[whysorude]

It takes about 8 weeks to see a difference with being gluten free.

I did a similar protocol to IW a few years ago and kept it up for over a year. I found it difficult to stick to when I changed jobs - new job deskbased with 4 hour commute - and slowly slipped back into old ways. However, I did feel great eating healthy, lost weight and had more energy, but didn't alievate raynauds, joint pain, dry skin etc.

Trying to start again. Sugar, processed meats, milk and gluten are my nemesis but unfortunately I am a sugar addict. 😕

[whysorude]

Reading back through your post OP, weighr loss, low antibodies and low TSH sounds more like Graves rather than Hashis.

[Bambini83]

Hi @whysorude thanks for your reply!

I had the receptor antibody test for Graves which was negative - have booked to see endo again start of June.

I've been gluten and dairy free for many months now to no avail. Wondering if I need to take steps further but it wouldn't be easy that's for sure!

[CrunchyCarrot]

Yes, I have used Izabella's protocol. When I was first diagnosed with Hashi's, I was quickly told (by various health fora) that I needed to go gluten free and maybe dairy free. I found her book and it was easy to read and with clear instructions. I decided to go gluten free and did so a few months after diagnosis, and a few months later went dairy free. I was dairy free for a year and gluten free for 3 years.

Sadly, this has not done me any favours. My antibodies did not reduce using this protocol. I became more vitamin deficient and developed histamine intolerance and problems with oxalates. I have now added both back in (have had some problems with dairy due to histamine levels) and can't say the gluten has changed anything. I am now attempting to get my vitamin levels back up.

So whilst I have to admire Izabella, at the same time I don't recommend her protocol. Cutting out foods just leaves you with more problems, ultimately, unless of course you are coeliac, then you have to cut out gluten.

[beastlyslumber]

I strongly recommend joining the forum at TPA UK and asking your question there. www.tpauk.com/forum/forums/main-forum-for-discussing-all-things-thyroid.16/

The members there, including myself, have been successfully self-treating their hashis and thyroid diseases for many years. It's a great place for support and advice.

[beastlyslumber]

Are you on any thyroid medication at the moment? Your TSH would normally be elevated if you are untreated hypo. If you go to the TPA forum, you can post up your numbers and get some advice on what could be going on.

[TheOccupier]

You sound very confused. I don't know who Izabella is but when I was diagnosed with Hashimoto's disease my antibodies were well into the thousands and I had most of the symptoms listed here, which you don't seem to have:
www.nhs.uk/conditions/underactive-thyroid-hypothyroidism/symptoms/

[wtfisgoingonhere21]

Hi op

I have had Graves' disease for years.

Ended up having a full thyroid removal because they couldn't get it under control.

Now I take meds daily however my levels fluctuate with time of the month my natiral normal all changes as well as being peri as it tips it all out of sync again.

I rarely have two blood results the same

Being over active can carry the same symptoms as under active.

Weight loss bad eyes jitters and anxiety are all related to being over active however I can also get these when under active.

As I've learnt over the years the joint pain tends to be worse when I'm low in t3 if my body stops converting the t4 for whatever reason it feels like sometimes so it can be a blip or I need to adjust my meds.

Can you see a private endocrinologist?

[Bambini83]

Thanks everyone for the replies and helpful suggestions! I’ve posted a fair few times on thyroid UK and had some useful advice there and on Hashimotos 411 group.

I’ve now actually started with a functional GP so I’m on a different path in terms of treatment as I have a few different things going on. I would agree with you @CrunchyCarrot I think restrictions in diet can actually be detrimental. It’s so hard to know what to do for the best at times.

@TheOccupier I don’t feel like I’m confused though I appreciate my first post is very garbled. In some cases Hashis involves a transient hyperthyroid state which can in some people last quite a while...’ Hashitoxicosis’. I’ve had it confirmed by new GP that we’re looking at early stages of Hashis. Yes the general presentation is hypothyroid as the thyroid has ‘burned out’ but that’s not the case for everyone...it can take a number of years for that to happen. If you google Hashitoxicosis you’ll see what I mean.

[Bambini83]

Thanks for the advice @beastlyslumber I’ll get some results together to post on TPA forum!