Newbie with hashimotos and in pain 😤😤

[Beanski]

Hi everyone, glad I found this sight, read some interesting info. I was diagnosed with hashimotos almost 20 years ago, I have been on 125 mg of levythyroxine and experienced hard,y any problems until just over a year ago when I developed pains in my legs, my feet, my back, hips, now up my arms, stiff fingers and painful wrists. I am sick of going to the doctors for them to tell me it is the menopause which I have been going through for eight years. I have been tested for R.Arthiritis, they sai my inflammation markers were fine. I checked my tsh results and realised that they were low 0.02 in June 17 then 0.06 in Oct and then after suggesting to my doctor that I think my dose needs lowering, she suggested I take 100mg one day and 125mg the next day, within two weeks of doing this my pain disappeared, only to reappear a month later worse than before. My blood test showed my tsh is now 0.11, they say this is normal even though the range says 0.35-0.45. I have gone dairy free, tried gluten free but almost impossible to do this when I am at work. Any suggestions welcome 🙏 p.s I work full time and have always been very active, but I find it so difficult in the mornings now to get moving, feel like an old lady and I am only 56 😂😂

[Clarrisa]

I am curious if you are driving & if so how far daily(?). I had similar pain going while I was driving frequently. I was driving roughly 30 miles each trip, 3 or more times per week. When I discontinued this commute the pain decreased & went away.

[Beanski in reply to Clarrisa]

I do drive Clarissa but I work less than two miles from my home

[Clarrisa in reply to Beanski]

If you sit for prolonged times or do any sort of lifting, twisting at work that could be aggravating matters.

[Beanski in reply to Clarrisa]

Yes I can’t sit still for too long

[Clarrisa in reply to Beanski]

When I was in similar shoes with work aggravating my system I got a referral from a sibling's Personal Trainer for a top of the line Physical Therapist (one Personal Trainers use themselves). After a thorough evaluation I received specific exercises to correct problems geared for my endurance. It did help.

Although the underlying problem was surely thyroid, you have to be functional at work & home while the thyroid medicine(s) kick in.

It may help if you have not already tried anything along this line.

[Beanski in reply to Clarrisa]

I am very active even when I ache, I work with teenagers so I try not to spend too much time in the office, maybe an hour out of my day. I walk most days although I can’t walk as far as I used to because my legs ache so bad. I ski every year which I love, used to do trampolining and gymnastics just for fun but can’t do these now so annoying, got bloods Tommorow so see what happens then

[sunsetalley]

Have you ever checked your levels of vitamin D and calcium?

[Beanski in reply to sunsetalley]

I have been taken vitamin D3, magnesium, calcium and zinc for about a month now

[SeasideSusie Remembering in reply to Beanski]

Beanski

Did you have Vit D and calcium tested?

Was calcium deficient?

Are you taking the correct dose of D3 for your level?

Are you taking D3's important cofactors magnesium and Vit K2-mk7?

Have you had B12, Folate and Ferritin tested?

As you have Hashi's, are you strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily to help reduce the antibodies?

[Beanski in reply to SeasideSusie]

Have my results posted them on sunsetally post below, didn’t know how to tag people

[sunsetalley in reply to Beanski]

Wish you knew their levels, these pains may be due to calcium deficiency...

Be careful about your bones health...

[Beanski in reply to sunsetalley]

Ok have my test results, according to my doctor everything normal apart from low iron, I took photos of my results but don’t know how to get them on here B12 level-186 ng/L (130-800), t4 9.6 pmol/L (7-20), tsh 0.09 (0.35-5), vitamin D 64 nmol/L (30-300) , calcium 2.45 (2.2-2.6), hope someone can make sense of these, i now have to go for another blood test for cealiac, do not think I have this. When I put my symptoms on symptom checker it comes up with rheumatoid arthiritis which makes sense to me but the doctor says my “inflammation markers” were fine?

[SeasideSusie Remembering in reply to Beanski]

Beanski

Your FT4 is very low in range for such a low TSH. You really need FT3 testing to get a full picture.

B12 is low in range. Many people are given B12 injections with results that low. Do you have any signs of B12 deficiency b12deficiency.info/signs-an...

I think maybe you should be tested for B12 deficiency/pernicious anaemia.

How much Vit D are you taking, you need to get your level up to 100-150nmol.

Do you take D3's important cofactor Vit K2-mk7 to direct calcium to bones and teeth where it is needed and away from arteries and soft tissue where it can be deposited and cause problems.

Is your calcium supplement prescribed? If not then your result doesn't indicate the need for supplementing unless it showed a deficiency before.

Are you addressing the Hashi's by being strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily?

[lisabax]

TSH level is not so helpful as free T4 and freeT3. Doctors don’t tend to check these. My TSH was frequently below the range - still is - but the T4 and T3 levels tell me whether I’m on the correct dose. So do my symptoms. If I’m having symptoms like you are I would undertake a range of tests. I do it privately through the labs mentioned on Thyroid UK website where you often get discount. You may get your doctor to test some of the things you are likely to be deficient in like Vit B12, Vit D, ferritin, folate, but even then they may not realise that if you are hypo you need to be well up in the range, not just at the bottom. So do ask for some more tests or have a private one if you can afford it. Then you should get a complete picture and post the results on the forum so that others can comment. Hope this helps.

[Beanski in reply to lisabax]

Ok, I can not see these on my results, so I will ask my doctor, thank you

[Beanski in reply to Beanski]

Spoke to doc this morning he said my free t3 and 4 are within range, gonna have another blood test

[greygoose in reply to Beanski]

You should know that just being 'in-range' is not good enough. It's where in the range the results fall that counts. If they are at the bottom of the range, you will still be hypo. Most people need their FT3 up the top of the range to feel well.

[seekingjenna71]

Your story sounds like mine though on 10 years younger then you. Increasing exhaustion and pain throughout my body. Lots of other symptoms too.

A few months and lots of good advice here I am feeling better.

I improved my levels in B12 and Vitamin D. I've gone gluten free And thus alone made me feel human again!

I've also done the thyroid tests mentioned above and discovered I'm not converting T4 to T3 very well. I'

[Beanski in reply to seekingjenna71]

I have phoned my doctor this morning, he has never heard of going gluten free for hashimotos!!! He has told me to do another blood test and he will check my b12 and vitamin D amongst other things, so back to the surgery I go 😂 I woke this morning and my bum and legs felt numb as well as all the usual pains 😂

[seekingjenna71]

No surprise with Drs response there!

My Dr told me I have no symptoms for Hashimotos. Been diagnosed hypo for 21 years is not a symptom?

I did private bloods to confirm 😑

When you get your results post them here. SeasideSusie knows her stuff!

[Beanski in reply to seekingjenna71]

Thanks I will