Hashimoto's and not feeling better

[KittyKitten]

Hi there!

I'm wondering if it is possible to just never feel better (lethargic, mentally slow, unable to concentrate/difficulty reading, fatigued, short of breath, etc) when having hashimoto's? Like do some people just feel bad for their entire life despite doing all the right things?

I know other people that have hypothyroidism and they aren't sick like me. So I'm wondering if it would be because of this or if it means something else is going on.

For reference I am taking the highest tolerable does of T4 right now (137mcg). I reduced it previously because I was having panic feelings but had to increase again because I was too tired. I will ask for a new blood test soon, but my older results are in my previous posts if you need to see. I have had blood work done and nothing is out of place (including vitamins). Currently I take a prenatal vitamin, fish oil, vit d spray, and get weekly b12 injections. Sometimes I take an additional b-complex but it makes me dizzy after a few days. I also am doing therapy to help with that side of things, and take an anxiety med if needed but I like to avoid as it makes me even more tired.

Things I have tried previously but did not help: gluten-free diet, avoiding intolerable foods, avoiding dairy, sibo treatment, antidepressants/other meds, exercising, NDT, T3, adrenal supplements, etc.

I am currently so unwell that I can't work. I can barely take care of simple chores and my fiance has to cook and grocery shop for me. I want to go back and I want to have a baby but I'm scared it won't be healthy since I feel severely ill. I'm at a loss at where to go from here and it breaks my heart. Could hashimoto's really just make me sick despite treatment?

Edit: Added labs

From 4-5 months ago, 137 mcg after quitting coffee.

TSH - 0.12 (0.20 - 4.00 mlU/L)

FREE T4 - 22.5 (10.0 - 25.0 pmol/L)

FREE T3 - 6.0 (3.5 - 6.5 pmol/L)

Labs from July, I reduced to 125mcg after having panic feelings (I apologize as I forgot I had them done again)

TSH - 0.66 (0.20 - 4.00 mlU/L)

FREE T4 - 18.7 (10.0 - 25.0 pmol/L)

FREE T3 - 5.3 (3.5 - 6.5 pmol/L)

I felt much better then! But several weeks later I begain feeling tired. So I increased back up to 137 mcg but have not had bloods again.

Other labs:

Vitamin D - they do not test where I am from unless you meet specific criteria, in which I do not meet.

Folate (March 2021) - >45.4 (>=12.1 nmol/L)

Iron Panel (March 2021)

Iron - 22 (6 - 28 umol/L)

TIBC - 54 (40 - 80 umol/L)

Transferrin saturation - 0.41 (0.15 - 0.50)

Ferritin - 48 (20 - 300 ug/L)

Ferritin (July 2021) - 47 (20 - 300 ug/L)

B12 - not done as on injections.

Also I have folate and Iron in my prenatals which I have been taking the last few months.

I apologize for any confusion! I realized some of my labs have changed. I wish this brain fog and memory issues would go away... but thank you for all of your help!!

[Buddy195 Administrator]

I’m sorry to hear you are still feeling unwell kittykitten. When did you last have your ferritin, folate & vitD checked? Getting these optimal & taking a daily magnesium supplement early evening has really helped my health & my anxiety is noticeably reduced. I take magnesium glycinate as this is easy on the stomach, but other forms are available. How long did you trial gluten free? It took me 3 months to see any noticeable benefits.Very best wishes to you.

[KittyKitten in reply to Buddy195]

Hi Buddy195! I added my labs to the post so you can see. I had to find them so it took me a bit. How much magnesium do you take? I know there is some in my prenatal but probably not a high dose. And I was gluten free for a year! I noticed no differences at all :(. What kind of improvements did you see?

[Buddy195 Administrator in reply to KittyKitten]

I take 2 of these early evening & it helps me relax & sleep amazon.co.uk/dp/B082HXHP83/...

For me, GF diet eliminated gastritis, bloating and gave me more energy.

[NWA6]

Hi Kitty. Sorry you’re feeling so low atm 😞 It is possible to feel better but it really does take time, esp if you have several issues going on at once. All of them flaring up at once, ganging up on you.

I’m sorry I couldn’t easily see your latest results, do you have them to hand, or post them on your bio, which you can update regularly?

I also know some who are hypothyroid and they’re not sick like me, one is tiny and a size 4(uk size), one is very large (size 20) and one refuses to take Levo because it made her feel rubbish and she says she’s ‘fine’ 🙈. My point is, we can’t compare ourselves. We’re here on this forum because we’ve been let down and not we’ll investigated. We’re too complicated for the time and cash strapped NHS. I’ve had to do all my own research and I’m so grateful to the members of this group and others for their support in educating me 🤗

At least you’re on B12 injections. That ticks one box. Do you supplement folate as well to help with B12 uptake? I’d definitely go back to gluten free, it may not seem like it works but it’s the hidden damage we can’t see. There are links to low B12 and gluten. Have you had IFA test?

[Hidden in reply to NWA6]

This is from OP's post 3 months ago.

TSH - 4.13 (0.20 - 4.00 mlU/L)

FREE T4 - 18.6 (10.0 - 25.0 pmol/L)

FREE T3 - 5.1 (3.5 - 6.5 pmol/L)

[JAmanda in reply to Hidden]

Looks like there’s room for a dose increase. For me getting T3 over 6 made a huge difference.

[KittyKitten in reply to JAmanda]

I haven't had a dose increase because when I stopped drinking coffee, I went hyper! I have updated my blood work in my original post here if you would like to look. But that is good to know, I will keep my T3 level in mind for my next blood test!

[KittyKitten in reply to Hidden]

Thank you, that was one of my older ones though! I updated in the post above

[KittyKitten in reply to NWA6]

Thank you for your reply! I just wish I knew what my issues were, I am so confused!

Also I added my labs to my original post

And I'm from Canada, but I feel similar. I have a doctor that's willing to help a bit but I don't even know what to ask for

And yeah I am happy to have the injections for now. Negative IFA. My doctor didn't check my b12 for a couple years I think before offering me injections. And now I am told I have no reason to need them because the doctor didn't even look to see if I was deficient! But they cured 50% of my problems, I was collapsing, losing my vision, unable to understand or laugh, etc. It was the craziest thing! But then I suddenly just stopped improving, so I know I'm missing something.

I am not sure if I can go back to gluten free! It was an awful year lol. I am too weak to make my meals/grocery shop. It was so stressful trying to find foods! I had a food intolerance test and found out that I was intolerant to rice and potatoes and egg whites and felt like I couldn't eat anything because that is what is in so many gluten free foods. I wasn't even intolerant to gluten. I was so relieved when I started eating normal again. I also struggled with an eating disorder for half my life so restricted foods is hard for me now. How do we know for sure that it actually helps?? Do you have any of those articles I can look at?

[greygoose]

What is in your pre-natal vitamins? Does it contain iodine? Iodine really isn't recommended for hypos. Or calcium? Or copper? There are certainly things we really don't need and shouldn't take, so that might have something to do with the way you feel.

[KittyKitten in reply to greygoose]

Thank you greygoose for your reply, I appreciate it! My prenatal does have all of those things, so that is good to know that I shouldn't have them. I have only been taking them for a few months and I have felt unwell for years though

[greygoose in reply to KittyKitten]

Well, calcium, copper and iodine are things that should be tested before supplementing.

It's very rare to be calcium deficient with a normal diet, in the western world. And calcium supplements are very badly absorbed, and can build up in the soft tissues and arteries, so best avoided.

Copper needs to be balanced with zinc, and hypos are usually deficient in one or the other. So, taking extra of the one you're high in can cause all sorts of problems. Best to get them both tested before supplementing one of them. And the trouble with multis like this are that they contain both.

Iodine is not something you want at all if you're hypo - especially with Hashi's. It should always be tested before supplementing, and even if you are deficient, supplementing should be done under the care of an experienced practitioner. Not something to be self-treated.

As a general rule, avoid all multis like the plague! There are so many things wrong with them!

[KittyKitten in reply to greygoose]

Thank you, that is really good information!

Sometimes I feel like I don't trust blood work results because the body has such an amazing way of making due with what it has. I suffered from an eating disorder for years, afraid of healthy foods, yet my blood work was always perfect (except one issue with potassium once and obviously my thyriod!) I know there are a lot of things I know it can show, but sometimes I'm skeptical just based on my past!

That is very interesting info though, my prenatal also has zinc, so I dunno if that makes it worse?

If someone with hashimoto's wants to get pregnant, should they not take prenatals then? I'm scared I won't have enough of everything

[greygoose in reply to KittyKitten]

my prenatal also has zinc, so I dunno if that makes it worse?

Well, I don't know if it makes it worse, but it is maintaining the status quo, which is not really what you want. You want to increase the one that is low, which will lower the one that is too high. If you take both, both levels stay the same, which is not good. And excess copper really isn't nice!

If someone with hashimoto's wants to get pregnant, should they not take prenatals then?

I don't think anyone should take any sort of multi. They have poor quality ingredients, are totally unbalanced, and all these nutrients should not all be taken at the same time. Iron, for example, should be taken at least two hours away from everything, except vit C. And, if you take iron and calcium together, then are going to bind and become unavailable for your body to use. On the other hand, vit B12 should not be taken with vit C. These things, when all taken together, tend to cancel each other out.

When I had my kids, multi-vits/prenatal vits didn't exist, and we managed just fine without them! At the first antinatal visit, we were bunged a pot of iron tablets, and that was it!

I'm scared I won't have enough of everything

That's where blood tests come in.

[max3122]

Hello! I’m writing from the land of Hashi’s wellness. All you write is recognizable down to the supplements. Two keys in my experience: vitD, and oral hydrocortisone. I was running headlong into Addison’s when a sharp PA suggested the corticosteroid. Magic for me. I am Hashi free for years now.Adrenal supplements? Time and money wasted; I tried them first. I realize I’m very fortunate. Hope it’s an option for you. Good luck.

[gabkad in reply to max3122]

That's an excellent idea.

[KittyKitten in reply to max3122]

Hi!! Did they offer the hydrocortisone just for your thyroid problem? Or did you have other issues that led to this being an option??

[max3122 in reply to KittyKitten]

Hi KittyKitten! The hydrocortisone came up to combat Hashi’s as I was getting nowhere with Levo. My heart rate went up uncomfortably and I was the most tired ever. I have MS and RA also, so fatigue and brain fog were already in place but the spirit-crushing came when Hashi’s moved in. I remember it well, like submitting to a lonely dark tunnel. Witchinghour referenced the idea of never getting better and that’s how it felt. But I did so please stay hopeful.

I remembered something else! The PA from heaven tested my testosterone levels which were at ZERO. She immediately gave me a horse-sized shot, then once a month after that until my level stabilized. I highly recommend getting tested. Testosterone of course is the male sex hormone and estrogen the female. But we all have both and need both!! Keep going, Kitty!!

[KittyKitten in reply to max3122]

Thank you! I will keep the hydrocortisone and testosterone in mind on my journey going forward. I'm sorry you have to deal with all of those conditions, but I'm glad you are feeling better at least!

[Hidden]

3 months ago your TSH was much higher than we'd expect to see with FT3&4 being where they are.

I don't have any real solutions; is a private prescription a possibility for you?

My bloods looked good on 150mcg Levo but I never really felt better. I have been on NDT for a fortnight and I have made subtle but significant improvements.

I have a lot of empathy for you; I felt exactly the same as you do that 'perhaps I just won't ever feel well again.' it's a miserable place to be so be gentle with yourself.

[KittyKitten in reply to Hidden]

Hi! I updated my labs in the post, I have labs that are more recent then the one another user posted. It just took me a bit to find them.

And what do you mean by private prescription? NDT? I have tried the one here in Canada, and it didn't work for me sadly. It seemed okay at first but then I had a horrible reaction to it

And thanks so much, I am sorry you have felt this way too. I just don't understand why it is so hard to feel better

[Dottyfurcat]

I felt like this when my Ferratin and vit D were really low, particularly the Ferratin at 24 (though according to my doctor's I was "within range" when actually I had absolute iron deficiency) On vit D, B12 and iron protocols since begining of the year and this week started NDT feeling so much better, before I felt like I was slowly dying. Iron deficiency is horrible. I have to stay on protocol or it drops super fast.

[KittyKitten in reply to Dottyfurcat]

How did you know you had absolute iron deficiency with your level? Did you do an iron panel for blood work or did you just try the iron protocol? I literally felt like I was gonna die at any moment prior to B12 injections but I no longer feel like that, thankfully! I honestly didn't know it was possible to feel like that. They cured half of my symptoms but now I have been left with never ending fatigue, brain fog and cognitive issues. I'm glad the NDT is working for you, I wish I could say the same!

[Dottyfurcat in reply to KittyKitten]

Blood works, I had iron deficiency without anemia, b12 deficiency yet its just above what my clinic will do injections for, and vit D deficiency. I get my bloods checked ever 3 month's using one of the online companies that do at home finger prick tests so I can monitor my vit levels and my thyroid

[Dottyfurcat in reply to KittyKitten]

I will add I suffered anemia as a child on and off too

[humanbean]

In addition to all greygoose 's comments on your prenatal vitamins I would add that if they contain folic acid you would be better to switch to a product of the type listed in this link:

chriskresser.com/folate-vs-...

Folic acid has to be converted into an active form of folate once you've taken it, and if you have methylation problems your body might not be able to do that. So you end up with what appears to be very high levels of folate in your blood, but in fact it is more likely to be unmetabolised folic acid which won't be doing you any good at all.

If you switch to a good type of folate supplement (as mentioned in the link I just gave) you will probably notice that your level of folate drops dramatically because the unmetabolised folic acid will (I'm guessing) eventually get excreted.

In order for your body to make use of the vitamin B12 you have you need adequate levels of folate. And I'm not sure that folic acid works for that purpose, so I would want one of the supplemental forms given in this paragraph from the link above :

You can supplement with folate if your dietary intake is inadequate. Look for products that contain the Metfolin brand, or list “5-methyltetrahydrofolate” or “5-MTHF” on the label. Avoid products that say “folic acid” on the label. Make sure to check your multivitamin, because most multis contain folic acid and not folate.

[KittyKitten in reply to humanbean]

Hi humanbean! Thank you for the reply. I do wonder if that is what is going on with me, I'm not sure! I was originally taking a prenatal vitamin that contained folate and not folic acid. However, I read that for pregnancy that folate (in supplement form) wasn't studied and they weren't sure if it was effective as folic acid which has been studied. So I ended up switching to one that has folic acid instead. I get confused as there is so much conflicting information and I just never know if I'm doing the right thing