Thyroiditis finally won. Just thankful I have a Doctor that is willing to treat it.

[greeneyedraven]

Hi. I have always been athletic, and outdoorsy when given the opportunity. Had a weird kidney issue causing chronic kidney failure, eventually having the left kidney on top of my right leg removed (yes, you read that correctly). Had trouble with doctors and constant health insurance changes in getting treatment of thyroid issues over the years. A few doctors did treat and correct the problems for a few years, where I would think it was corrected. But eventually, it would return. Past 5 years have been a LOW thyroid cycle and struggle again. When DRs tell you nothing is wrong, blood work looks ok, it's change of life and getting old - You don't keep going back. Except I've been getting that Change of life excuse for 15 years now. Once again, I would go through the cycle of becoming more tired and begin cutting things & people out of my life to conserve energy and tolerance, due to brain fog / insomnia / exhaustion. For me, that seems to be the normal cycle of things with Thyroiditis the past 40 years - you feel normal, ok, insomnia becomes a little worse, you have energy, then LOTS of energy, blood pressure elevates, agitation begins to sit in, then kind of tired, you're sleeping past the alarm, headaches become regular, skin and hair dry as dust & itchy - driving you nuts, then you're really tired, cutting things out thinking you can recover, then fatigue where you are lying around more/sitting more/quit going to the gym/quit going on walks or going to events you've always enjoyed, finding excuses not to go because of exhaustion, horrific brain fog makes you extremely forgetful - even worrying about maybe forgetting to pick children up or falling asleep and missing pick up time, you struggle to get things done, don't care, ache all over, become short tempered, snap at people asking for favors and wonder why can't they see how exhausted you are, then depression because no one does help. So - July 2020, went back to a Doctor willing to help in the past and he put me back on 50 mcg T3 / Cytomel. Life is improving again - just with change of life issues approaching quickly. I only went to a DR when I couldn't take it anymore - but looks like I will need annual checkups to keep this under control because the condition has really worn the thyroid down into much longer bouts of LOWS and very brief periods of HIGH Energy. Other than that, learned I am gluten sensitive, which doesn't surprise me - have had small incidences throughout life but it has definitely become a huge problem the past 5 years. We shall see if it improves with thyroid treatment. And despite still having a lot of color in my hair, I've let my hairdresser do what ever she wants with my hair - so that's been interesting to see light shades. Wish everyone well.

[pennyannie]

Hello Greeneyedraven and welcome to the forum ;

So are you diagnosed with Hashimoto's Disease ?

I see you are in the States - in the UK doctors are not allowed to prescibe T3 - patients need to be referred to endocrinology and there is no guarentee you will be sanctioned for even a trial - many patients are refused anything other than T4 thyroid hormone replacement.

I am without a thyroid and have been denied both T3 and NDT and am now self medicating and buying my own full spectrum thyroi hormone medication if I want to have any life.

So, what can we do to help you, what is your question for forum members ?

[greeneyedraven in reply to pennyannie]

Good morning and thank you. Yes, Hashimotos. I'm in Texas, originally from Chicago IL. I've had thyroid problems diagnosed since 13. During a sport physical, a DR said it was puberty and I would probably outgrow it. Then postpartum thyroiditis after every birth (3). Even had an infected thyroid from virus or bacteria, causing thyroid storm a few times where your neck is bright red, hot, swollen, and you cannot sleep - even with sleep aid medicines. How can you help? I'm not sure. Hoping to read experiences that may help me. I've never been able to get much help over the decades from physicians. I've been on T4 with no effect. Been on natural thyroid medicine containing T4 & T3 that seemed ok. But T3 seems to be what works for me. I was on it for 5-6 years at one point. Was fine. Then Doctor left town, insurance changed, and new DR just ignored it - said blood work was ok and wouldn't renew the prescription. I remember telling him, isn't that why I am taking it - for normal blood results? The highs and low are horrible. Many DRs push anti depressants and I just walk out. I guess my question today would be regarding T3 balancing out other body functions. I would like to drop the weight. So does T3 lower the stress hormones and since I also tested positive for gluten sensitivity - is there a diet out there for the two? I have noticed if I eat a piece of bread or small bit of pasta at a friends house because there is no choice - the scale goes up 3-4-5 pounds. After a week of avoiding gluten, it falls back down. 40 lbs added from my thyroid going low, seems to be my unlucky number of weight added every time. I'm definitely better - but still don't have the energy after 9 months of T3. Sorry about the typos. Last correction here, I promise ha.

[pennyannie in reply to greeneyedraven]

Well I 'm with Graves disease so can't offer any personal suggestions but I do read of many forum members referring to the research of Dr Izabella Wentz who, I believe , is Stateside and well known in this specialisation.

No thyroid hormone replacement works well if your ferritin, folate, B12 and vitamin D are not maintained at optimal levels and I understand with Hashimoto's it's important to heal your gut and work out which food intolerances you have that trigger your immune system to attack your thyroid so to try and preserve what functionality the gland still has and restrict your diet accordingly.

[greeneyedraven in reply to pennyannie]

Well that is very helpful. Thanks. I know my iron is low from time to time. And the past year has been - started bruising way too easily. I can look into those.

[greeneyedraven in reply to pennyannie]

Dr Izabella Wentz looks interesting. Just typed in her name and cache brought up estrogen dominance. That's another issue I've had to deal with from time to time.

[SlowDragon Administrator in reply to greeneyedraven]

Gluten intolerance is EXTREMELY Common with Hashimoto’s

Hashimoto's frequently 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. Dairy is second most common.

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

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

[SlowDragon Administrator]

When were thyroid and vitamin levels last tested

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Day before test split T3 into 3 smaller doses at roughly 8 hour equal intervals and take last 1/3rd of daily dose roughly 8-12 hours before test

Is this how you do your tests?

Testing options in USA

healthunlocked.com/thyroidu...