Need Encouragement: After years of feeling... - Thyroid UK

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Need Encouragement

Linzd profile image
18 Replies

After years of feeling bloated and terrible for no reason, all tests normal, I was diagnosed with Hashimoto's back in March with Thyroid antibodies with these results:

TSH 2.024uIU/ml T3 Total 80 ng/ml Free T4 1.04 ng/dl

After 2 months on 25mcg Levo I have these results:

TSH .895uIU/ml T3 1.30 ng/ml Free T4 1.30 ng/dl

My Endo felt this was an improvement and I should feel better, but I don't. She was either going to stop the meds (if they are making no difference) or add 2.5 mcg Liothyronine SOD. I asked her to add this as not being medicated at all clearly wasn't working.

My biggest gripe is digestive issues, but I also have 15-20 lbs weight gain, and puffiness and joint pain that I can't connect to specific foods. And athletes foot that I can't seem to shake. I am doing a cross between autoimmune paleo and intermittent fasting with bulletproof coffee (Coffee with MCT oil and grassfed ghee for breakfast no food until 2 and no eating after 8 so you "fast" 18hrs a day) ,mostly because I feel better the less I eat. So no nightshades, no grains, no dairy, no eggs, no soy, no corn, no nuts/seeds/legumes, no citrus... I am on supplements galore (benfotiamine, probiotics, Formula SF722, B vitamins, D vitamins, glutathione, selenium, digestive enzymes, magnesium, triphala, calcium d-glucarate, NAC, fish oil..Not all everyday) I know I had a Vitamin D deficiency, not sure of any others. I eat all whole foods, lots of spinach and kale, healthy fats, quality meat fish and poultry. Filter my water and HEPA filter the air...

I have read Root Cause, The Hashimoto's Protocol, The Autoimmune Solution and the Elimination Diet. I AM TRYING. SO. HARD.

I guess the point was, has anyone out there had an Ah-Ha moment they could share? Something you added in or cut out that made a big difference? I know it takes time, but for all I'm doing, my results aren't measurable enough and its frustrating.

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Linzd profile image
Linzd
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18 Replies
Clutter profile image
Clutter

LinzD,

Can you post the T3 and T4 lab ref ranges please. It's not possible to see whether your T3 and T4 are good or bad without them. TSH 0.895 indicates 25mcg is an appropriate dose.

Linzd profile image
Linzd in reply to Clutter

T3 Range 58-159

Free T4 .7-1.48

TSH .35-4.9

But I have been within range for a few years with symptoms

Clutter profile image
Clutter in reply to Linzd

Linzd,

FT4 1.30 is in the upper range which indicates adequate medication. I'm afraid I'm not used to Total T3 so I won't be able to interpret that.

Have you had ferritin, vitamin D, B12 and folate checked? Low/deficient symptoms can present similar to hypothyroid symptoms.

Linzd profile image
Linzd in reply to Clutter

I haven't, only D which I was deficient in. My iron was tested before and found to be ok. I take B12, I could add folate as well.

Clutter profile image
Clutter in reply to Linzd

Linzd,

You only need to supplement what you are deficient in. If you haven't tested any of ferritin, vitamin D, B12 and folate in the last 12 months it is worth doing so to check levels are optimal.

Nanaedake profile image
Nanaedake

Did you get your B12 and folate tested as well as ferritin? Test results aren't always reliable for B12 but worth getting tested.

SlowDragon profile image
SlowDragonAdministrator

Magnesium is cofactor when taking vitamin D & can help in its own right too.

Have you tried taking Levo at bedtime- research suggests it may be more beneficial. Some of us find it very good, others try it and don't like it, or no different. I find it much more convenient & works better for me too.

Good quality vitamin B complex will have folate in

If taking B complex you need to stop it 4-5 days prior to any thyroid TSH test as biotin in most B complex can mess up TSH results

endocrinenews.endocrine.org...

Linzd profile image
Linzd in reply to SlowDragon

I didn't stop taking Biotin before doing this last test. I wonder if it could have affected my numbers.

SlowDragon profile image
SlowDragonAdministrator in reply to Linzd

Possibly- another member on here got completely different result when she repeated her test after stopping biotin

Mikegov profile image
Mikegov

I used to Intermittent Fast years ago and it helped me lose weight successfully. However since being diagnosed with Hashimotos I've stopped as I couldn't do it - made me feel very light headed and ill. I believe Hashimotos can screw up blood sugars, so since switching to eating at regular intervals, including breakfasts, and eating a lot more healthy fats I've felt a lot better

dtate2016 profile image
dtate2016

What I have heard is that it takes six months of being on the gluten-free dairy free soy free etc. before The gut starts to heal. You're doing all the right things . I begin to add 1 tablespoon of Braggs vinegar (unfiltered with the "mother") - which is a type of enzyme addition . With the digestion issues that you speak of it may be that you are low on digestive enzyme's . I have Hashimoto's and I did Test low on digestive enzyme's . There are other kinds of enzymes you might want to look into . Proteolytic enzyme's are one but they're powerful and you must go slow if you decide to Use them. You don't need both proteolytic enzyme's and digestive enzymes - try One or the other in an experiment . There are chewable digestive enzymes for children that I like - they contain mostly bromelene. Very mild digestive enzymes . The vinegar works maybe better than any of them . And oh yes be sure and stir the vinegar in a cup of clean water and drink it right down. I start my day with that little concoction and I don't have to have it again . However you can drink that mixture several times a day if you continue to have digestion issues . My doctor told me that some people have trouble with thyroid medications because they don't have the digestive enzymes. But you can actually be tested to see what your digestive enzymes are like .

You will find a lot of encouragement here and I know you will find better health Soon! Hang in there - keep reading here and please let us know when you start to feel some results and feel better . The enzymes were truly an Ah Ha moment for me .

HLAB35 profile image
HLAB35

Replying to this post - as you have your supplements listed here.

I found that introducing / eliminating any foods or supplements need a bit of a trial period for each one to see if it makes things better or worse... I appreciate the going for it approach for speed, but the problem with total elimination and supplementation doesn't really help you identify what's working; what's so-so and what's potentially harmful.

If you're still on NAC it may be worth swapping to a more generic amino acid supplement or having it in a more natural form such as in coconut kefir. NAC is possibly helpful for short term elimination of harmful gut microbes and good for lung health, however it comes at a cost: For starters it can actually be quite harsh on the stomach; it also up-regulates the use of b vitamins and magnesium and you really need to take NAC with Magnesium at the very least. I found myself getting peripheral neuropathy after I took NAC for six months, so I've stopped for now.

If you suspect that the gut issues could be down to helicobactor there are now herbs that are apparently working possibly better than antibiotics. Eliminating this may be the key??

If gut symptoms persist I really think you should see a GP who'll refer you to a gastroenterologist at least they'll hopefully also try and rule out anything else that could be going on N.B - they may try to put you on PPI's - which I personally find counter-productive in hypo, because it's usually a problem with low stomach acid for us, so seek a second opinion if they do that!

Linzd profile image
Linzd in reply to HLAB35

I have stopped taking the NAC, my dr has me on this regimen now:

Cod Liver Oil - 2 caps once per day ( Day 1 - 14)

GLA130 EPO - 2 caps - 2x/day ( Day 15 - menses)

B-Complex Plus - 2 caps - 1x/ day with breakfast.

Trace Minerals (60 days, do not refill after that) - 1 cap once daily

Seleno-MET - 200 mcg daily

Liv-gen (do not refill once you finish)- 10 drops twice daily

HPTP (do not refill once you finish) - 10 drops twice daily

Continue Vitamin D3 - 5,000 per day

Continue Oxicell-SE - 1/2 pump twice daily

Continue - probiotics and Magnesium

Castor oil - apply to abdomen nightly

HLAB35 profile image
HLAB35 in reply to Linzd

This sounds familiar' ish, but I didn't get on with 5-HTP (HPTP??) at all - it made me very drowsy. Not sure what Oxicell is? Magnesium really varies and it took a while to find a good one. Magnesium Citrate is pretty good all-rounder and so is Magnesium Malate - especially if you have any sort of fibromyalgia symptoms.

B-complexes also vary - I need one with plenty of b5 and p5p and some methyl folate. It really takes a while to perfectly tailor your B's as we're all different. I also have to take methylcobalamin as a sublingual.

Are you taking vitamin K2 mk-7? This is recommended if you're on high dose vitamin D - it'll direct Calcium to bones and away from soft tissues.

You could also pm Seaside Susie for her recommendations on supplements - she's very good.

Linzd profile image
Linzd in reply to HLAB35

I have been taking the HPTP for only a few weeks haven't noticed any difference there. Oxicell is a Glutathione cream with Superoxide Dismutase that applied topically to the thyroid is supposed to help with symptoms according to the book "why do I still have thyroid symptoms? when my labs are normal"

ovitaminpro.com/apxoxicells...

I am taking a B complex as recommended by my functional dr Pure Encapsulations B Complex Plus. I am not sure yet how I am doing on it, noticed no difference at this point. I will look into the Magnesium you suggested, I am almost through my bottle of Magnesium Citrate. I am not on Vitamin K2 mk-7, I will ask my doctor about this.

HLAB35 profile image
HLAB35 in reply to Linzd

Most doctors have never heard of vitamin k2, but a functional doctor may..there are books about its efficacy (it was actually discovered by a dentist from Oregon at the start of the twentieth century) and why we now need to supplement, whereas in the past it was in a lot of our foods.

vitamink2.org/

Sounds like a pretty good b complex, but if you had (you don't) low b12 then you'd probably need to take a b12 tablet separately too. Glutathione only made a difference when I had a cold and it went very quickly, but it was a bit expensive to have all the time... it's in my box of emergency extras (like zinc lozenges) rather than a daily supplement!

drmyhill.co.uk/wiki/Ferment...

Hope the above link helps too.

HLAB35 profile image
HLAB35

You may be mixing your spinach with iron containing foods - problem with that is that spinach contains lots of oxalic acid (like tea) which'll bind with any non-heme iron you're eating at the time (meat contains heme and non-heme iron; vegetables and grains only contain non-heme iron).

Linzd profile image
Linzd in reply to HLAB35

I would say I definitely am I eat spinach almost everyday to get more greens in with my meals. I can cut this back if it could be causing me problems

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