I keep changing dose, feeling better, then having a flare-up of mysterious symptoms, then feeling worse again.

[QueenOfFlies]

I (31F) was diagnosed with Hashimoto's exactly one year ago. Before then, I spent 2 years trying to convince public healthcare that I was having hypothyroid symptoms, but my TSH kept coming back at 2.5 so they dismissed me. In August 2023 I saw a private endo and she put me on levo as my TSH came back at around 9.38.

Back then and still after I started medication, I have been cycling through the same events: I feel slightly better, then I have a flare-up of weird symptoms (not hypo symptoms), and then I feel hypothyroid again. The flare-up is basically at night I get very bloated, my skin burns and itches, and my body is on fight or flight. I will fall asleep and then wake up during the night, super itchy and convinced that I am in immediate danger. In the morning, I will have joint pain, hot flashes and my face is puffy.

With the medication I have seen a significant improvement, but this cycling has continued and resets when they change my dose. I feel better with the new dose, then I have the episode, then I feel worse again. Here's a summary of my lab results since I was diagnosed:

My symptoms before diagnosis:

- Hair loss

- Fatigue

- Feeling numb and uninterested

- Low libido

- Joint pain

- Bloating and constipation

- Brain fog

- Weight gain (+12 kg in one year)

- Intolerance to both cold and heat

- Puffy face

08/23: TSH = 9.38 (0,27 - 4,20), T4 = 13.6 (12,0 - 22,0) - I was put on 50 mcg

antiTPO = 5,98 (< 34,00), antiTG = 25,08 (<115)

Thyroid ultrasound: a small nodule Rt and mildly inhomogenous parenchyma on both Rt and Lt

11/23: TSH = 0.16, T4 = 21 - I had hyper symptoms. Dose reduced to 25 mcg.

02/24: TSH = 9.24, T4 = 14.2, antiTPO = 7.79, antiTG = 281.8 - Dose increased to 60.7 mcg and official Hashimoto diagnosis.

05/24: TSH = 6.1 (0.35 - 4.94), T4 = 14.9 (10 - 23) - Dose increased to 85.7 mcg

08/24: TSH = 0.94 (0.35 - 4.94), T4 = 1.16 (0.70 - 1.48) - I see my endo at the end of the week

B12 = 308 pg (187 - 883), D = 33.7 ng/mL. Waiting for ferritin results.

My TSH is within range but I still feel quite crappy. 2 weeks ago I had this flare-up of weird symptoms again and felt very jittery, last week I had diarrhea every single day (I am usually more on the constipated side). This week I feel more "normal" but a lot of hypo symptoms have come back: fatigue, hair loss, puffy face, feeling numb, joint pain and irritability.

Supplements I take:

- Vitamin B complex (stopped taking it 6 days before the test because it contains biotin)

- Iron

- Vitamin D

- Selenium

- Magnesium

- Omega-3

- Melatonin and valerian pills to sleep

I always wait one hour after taking my levo before having breakfast, I take iron alone in the afternoon to avoid interference with the other supplements.

Other useful info:

- Diagnosed with IBS. I suspect it might actually be SIBO because I get bloated immediately after eating, with burping and pain from trapped gasses in my upper abdomen, and it gets worse when I eat any starchy foods.

- Negative for celiac

- Vegetarian for 5 years, have reintroduced fish in the last months because I had to cut down legumes

- Suspected allergies to birch and hazelnut pollen with oral cross allergies to a long list of fruits (apples, pears, kiwis, figs, all pit fruits) and nuts (hazelnuts and almonds) and oddly soy milk but not tofu. Oral allergy symptoms: itchiness in my mouth and throat

- Some of the weird symptoms episodes have happened after drinking red wine or eating silk tofu

- I have had a couple of big gastro-intestinal infections: Shigella as a teenager and unknown gastroenteritis in 2012 (could be viral).

Am I missing something here? It sounds to me like an issue with histamine issue, perhaps triggered by something gastro-intestinal, but the rheumatologist I saw last year totally dismissed the idea.

[greygoose]

Hi QueenOfFlies, welcome to the forum.

Have you had your cortisol tested? Could be you have adrenal fatigue.

If I were you, I'd cut out all forms of unfermented soy. It's not just about allergies, it's that soy can prevent thyroid hormones being absorbed into your cells. It's a very bad thing to eat for anyone but especially for hypos.

[QueenOfFlies in reply to greygoose]

Thank you and thanks for your response! I had my cortisol tested last year and it seemed fine:

Cortisol Morning 422.1 nmol/L (102.0 - 536.0)

Adrenocorticotropic Hormone (ACTH) 61.5 pg/mL (7.2 - 63.3)

Besides soy sauce I have stopped eating tofu and soy protein fake meat. It's been just a month or two. Is there something else I should be looking out for?

[greygoose in reply to QueenOfFlies]

OK, that's not too bad, but a lot can happen in a year, so do keep an eye on your cortisol to make sure it doesn't get any lower.

As well as avoiding soy, it would be a good idea to avoid artificial sweeteners and highly processed seed oils, like sunflower seed oil. Apart from that, if it agrees with you then it's good. Although many Hashi's people are gluten-sensitive or have Coeliac Disease. Have you been tested for Coeliac?

[QueenOfFlies in reply to greygoose]

Sounds fair enough. I think besides eating outside I don't come across those often. Yes I was tested for celiac (IgA) and was negative

[greygoose in reply to QueenOfFlies]

OK but you could still be gluten-sensitive, so maybe worth trying a few months gluten-free, to see if it helps.

[QueenOfFlies in reply to greygoose]

That's the conclusion of a dietician I saw back in 2022 and I went gluten free for a couple of months but of course I had untreated Hashi so it made no difference. I will try to see if I can get the SIBO question resolved before trying again. I don't live food restrictions very well since I did the FODMAP diet with that dietician and she made me stay on the restriction phase for 3 months. Thanks for all your suggestions!

[greygoose in reply to QueenOfFlies]

You're welcome.

[Sleepman in reply to QueenOfFlies]

Sorry your struggling. You sound organised and pro active.

Measuring T3 a few times is useful to see if you are converting well for the T4 tablets ?

It sounds like you failing thyroid is putting out T4 and T3 as it is attacked.

I tested negative for celiac but cannot take any gluten.

[QueenOfFlies in reply to Sleepman]

Thank you, after being dismissed by drs for 2 years I had to become very proactive :') I will see if I can convince my endo to test for FT3.

It sounds like you failing thyroid is putting out T4 and T3 as it is attacked.

You mean like hashitoxicosis?

I tested negative for celiac but cannot take any gluten.

What's weird is that indeed bread and pasta tend to make me feel crappy but also rice and potatoes. Whole wheat seems fine.

[CapnM in reply to QueenOfFlies]

if you read thyroid for dummies (which I wish I had read so much sooner) the author explains how when you thyroid is under attack you can swing from hypo to hyper through normal (euthyroid) then back to hypo. She explains this for post partum and silent thyroditis but pretty sure it applies to Hashi too. as person above suggests your thryoid dumps thyroxine into your system. i am sure i get this when I have an auto immune attack as i get myopathy (muscle weakness) of which the worse symptom is that is trashes my sleep (sleep apnea). i currenly have one or two attacks a year which have got steadily worse over last 5 years. I did an initial trial of gluten free some years but it was early days and I didnt really know what I was doing, now this year I have really gone for it as I am desparate to get rid of these inflammations. fingers crossed as should know by end of year if attack free.

[Horsecrazylady79 in reply to greygoose]

First thing I thought when I read this post was AI, this sounds almost like my story, diagnosed hypo 2016 and almost a year to the day I started getting really ill again and it was only by chance another doctor clocked my cortisol results, had it rechecked and discovered I had adrenal insufficiency. Also if you have IBS or SIBO then you could be B12 deficient, even with the result you have, that's the levels in your blood, not whats being used by your cells, and if you already have gastro issues there's a chance youre not absorbing the B12 where you need to. I'm the same, my levels were literally one inside the lower mark, but haematology wouldn't allow my GP to give me a trial. Despite the many symptoms I had showing I desperately needed it. After speaking to the pernicious anaemia society they advised me to try self injecting and it literally changed my life, as well as my AI diagnosis.

Good luck, I hope you feel better soon x

[SlowDragon Administrator]

08/24:

TSH = 0.94 (0.35 - 4.94),

T4 = 1.16 (0.70 - 1.48)

No Ft3 result

Was test early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Free T4 (fT4) 1.16 pmol/L (.70 - 1.48) 

Ft4 only 59.0% through range

Ready for next increase in dose to 100mcg daily

B12 = 308 pg (187 - 883),

D = 33.7 ng/mL.

Waiting for ferritin results.

B12 is very low considering that you take daily vitamin B complex

But as a semi vegetarian ( and previously totally vegetarian) that’s not surprising if you weren’t taking a daily separate B12 supplement

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week or possibly still daily

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

[QueenOfFlies in reply to SlowDragon]

Thank you for your response and the links on B12.

Was test early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

It was done at around 9 am, fasting and last levo dose was in the morning of previous day, likely around 9 am.

Ready for next increase in dose to 100mcg daily

Is this based on the aim of increasing the FT4? I am not sure if the TSH is too low or too high considering the swinging symptoms. What do you think is going on?

B12 is very low considering that you take daily vitamin B complex

Are you vegetarian or vegan?

I was a vegetarian for 5 years, and now I have reintroduced fish for a couple of months, but not meat. Can a condition like SIBO (which I suspect) or other gut dysbiosis cause this type of deficiencies despite taking supplements?

Interestingly, the nurse who drew my blood was telling me B12 oral supplements don't work and that you need injections.

[SlowDragon Administrator in reply to QueenOfFlies]

Interestingly, the nurse who drew my blood was telling me B12 oral supplements don't work and that you need injections.

As your diet was lacking B12, it’s likely supplements will work

Suggest you retest 6-8 weeks after taking daily B12 as well as vitamin B complex

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

if B12 remains low then start on B12 injections

Gut issues and bloating very common when still hypo due to LOW stomach acid

Getting dose increase in Levo and all vitamins at optimal levels….then test TSH, Ft4 and Ft3 together

Many of us with Hashimoto’s eventually may need addition of small doses of T3 prescribed alongside Levo ……but important to get dose Levo high enough FIRST

You are currently on low dose unless extremely petite

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

Some people need a bit less than guidelines, some a bit more

[QueenOfFlies in reply to SlowDragon]

I weight 70.5 kg, height is 161 cm. Should my TSH be lower than 0.94 then? Or how do you relate the need for a dose increase with my TSH levels?

[SlowDragon Administrator]

how much vitamin D are you taking

Vitamin D better near 40ng/ml (100nmol in U.K. units)

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies

As coeliac test is negative you can immediately go on strictly gluten free diet 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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

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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

[QueenOfFlies in reply to SlowDragon]

How much vitamin D are you taking?

I'm taking 25 ug (1000 IU) of D3 daily.

To be honest, I know it's worth a shot to try eliminating gluten and dairy, and I might be too obstinate but before I restrict my diet more than how it is now, I will 100% do a SIBO test. I can't say for sure, but it seems to me that the issue is generally starchy foods. I can eat a slice of whole-wheat bread and be fine but a plate of home made potatoes will annihilate me. Pulses were also a big issue so I cut them off, cut off tofu and soy-based meats, mostly avoid potatoes, only whole-wheat bread, avoid pizza and pasta, and only small portions of rice. Dairy is just yogurt, rarely cheese.

[SlowDragon Administrator in reply to QueenOfFlies]

All thyroid patients need to avoid all soya

Lots of thyroid patients react to nightshades….potatoes, peppers, aubergine etc

Pizza, pasta causing issues suggests gluten

Some people can tolerate ancient grain sourdough or similar wheat