In need of help : Hey so not sure how to word... - Thyroid UK

Thyroid UK

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In need of help

Butterfly87x profile image
22 Replies

Hey so not sure how to word exactly everything that’s in my head right now due to brain fog and all but I’ll try and forgive me if it doesn’t all make perfect sense.

History: hashimotos diagnosed after first pregnancy, Graves after second pregnancy, been hyper since feb this year and first sign of levels finally coming down to normal was last month after being on carbimazole and then tapazole which finally worked to bring levels down.

Tapazole dose changed from 10mg to 5mg after latest blood work showed that my t4 was on the lower end and heading towards hypo.

So very glad to be away from the hyper symptoms but as you can imagine the fatigue has hit me hard past few weeks (it was always there with graves but energy was up and down like yo-yo).

So my main issues now that are plaguing me are:

1. Muscle weakness from graves levels being high so long ( I say weakness but it’s more like almost unusable) absolute burning in my arms mainly but everywhere with the slightest exertion such as getting my kids dressed.

2. Joint pain especially in my knees which I think is caused by the medication if I’m not mistaken.

Of course there’s others but these are the pain side of things which is something I’ve never had to deal with before and as a busy mum of two young kids it’s very difficult being 32 years old & feeling like my body is 80 years plus.

Sorry for the long post but my main Q is can someone break down easily what supplements I should be taking for things like this, also when the muscles are in such a bad way is it a smart thing to start the gym to try to build them up or is that not advised while they are so weak. Not that I feel like I could attempt anything right now but it’s useful to know if even starting off small is the right thing.

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Butterfly87x profile image
Butterfly87x
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22 Replies
mumbleslowly profile image
mumbleslowly

Maybe fibromyalgia ,do you feel more sensitive to touch, as in if you poke your arm does it feel worse than normal if so its a possibility . sorry if it is

Butterfly87x profile image
Butterfly87x in reply tomumbleslowly

God I hope not, if definetly feels more sensitive but I hope it’s not that

mumbleslowly profile image
mumbleslowly in reply toButterfly87x

I do too it is pure hell, I have had it for 27 years and not one day off ,I pray you don't have to suffer regards Linda

Lora7again profile image
Lora7again

I would stop the medication for a few days ... I was on PTU and my consultant let my TSH get to 9 and I felt dreadful. I stopped taking the medication and I then went into remission. You should try that and see if you go into remission because you can always start the medication again. Read my profile ... I am now in remission again after being underactive for 3 years. I am not medically trained but I do have experience of Graves' disease.

Butterfly87x profile image
Butterfly87x in reply toLora7again

Yeah I really want off this medication now for sure as I’m even getting stomach issues from it, I’ve to get bloods done again in 3 weeks to see how they are now being on a lower dose and if they are more hypo which I’m sure they will be will be I’ll be making sure the dr let’s me come off it for a bit to see what the result will be after that.

Lora7again profile image
Lora7again in reply toButterfly87x

The drug can affect your liver ... I know someone in the US whose liver failed. It is a rare occurance but something to think about.

SlowDragon profile image
SlowDragonAdministrator

Sounds like you need to get full Thyroid and vitamin testing. Low vitamin D can cause joint pain, low B vitamins can cause burning sensation

In previous post you say you have low vitamin D. Are you now supplementing?

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

Are you on strictly gluten free diet?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto's. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) and Graves

Ask GP to test vitamin levels if they are helpful

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Come back with new post once you get results

Astridnova profile image
Astridnova

A major symptom of hypothyroidism with me is knee pain (and knee popping out) and fibromyalgia. When I'm medicated properly, these problems more or less disappear. I also inject B12 weekly.

Butterfly87x profile image
Butterfly87x in reply toAstridnova

I think I’ll try to get these injections also I have heard b12 is very good! The knee pain is so awful

pennyannie profile image
pennyannie

Hello Butterfly 87x

I think it might help you if you post on the Elaine Moore specialist website for Graves Disease.

It's Stateside and has a rolling open forum, much like this amazing site.

Since you are in Canada, her website will be more readily available for immediate conversation with other people, with there being little time zone differential.

Elaine Moore has a section on vitamins, minerals, herbs, and natural adjuncts one can use to try and modify and ease symptoms. There are treatments options other than the accepted medical mainstream route and she is fully supportive of many options being used to ease and help patients.

Holistic and alternative treatments are discussed and would hope your country is more open minded to her suggestions than what we may experience over there in the UK.

Butterfly87x profile image
Butterfly87x in reply topennyannie

Yeah I’m actually from the UK so I know what you mean everything is a struggle getting treatment & getting Dr’s to understand thyroid issues. They’re good here but I’ve still yet to encounter a dr anywhere mentioning anything about gluten free which surprises me.

pennyannie profile image
pennyannie in reply toButterfly87x

Oh, I'm sorry, I took a quick look back and thought I read your were outside the uk.

Are you back from Montreal now - ?

Butterfly87x profile image
Butterfly87x in reply topennyannie

Ah yes long story lol I’m from the Uk and moved to Middle East 10 years ago but with some periods of living back in Uk in between, then from Middle East moved here but go home twice a year to Scotland.

Butterfly87x profile image
Butterfly87x in reply toButterfly87x

Also meant to say thanks I’ll look into that website I haven’t heard of it before now.

RockyPath profile image
RockyPath

It’s an accepted fact that your energy metabolism responds positively to the stimulation of exercise, so you should do as much as you feel able to without exhaustion. Remember to take a day off to recover.

Acetyl-L-Carnatine is an amino acid that supports energy metabolism, and you can get it in a tub of powder and take it in a glass of water on an empty stomach.

Branch Chain Amino acids (BCAA) also come in powder and will help to power your cells.

Nutricost makes these in Utah, (no Chinese sources) and they’re good. I can feel the effects of the ALCAR and BCAA in mood and energy for exercise.

I wouldn’t overdo the vitamins and minerals until you have tests to see where you’re deficient.

SilverAvocado profile image
SilverAvocado in reply toRockyPath

I'm not so sure that exercise is good when the muscles don't have the right amount of thyroid hormone available to them. I've heard that both too much and too little prevent them from being able to regrow after the damage of exercise (the main reason we do exercise, so our muscles become stronger), but also are very vulnerable to damage.

I may be wrong about this, but it's sounded right to me! Exercise also uses up thyroid hormone when it's low, and puts extra demands on the adrenals so should be approached very carefully when hypo.

Butterfly87x profile image
Butterfly87x in reply toSilverAvocado

Yes this is a good point also, I have a follow up appointment soon I guess I’ll have to wait until then & see what the endo says about exercise. I genuinely don’t even think I could manage any right now if I tried without some sort of help to repair the muscles first if that makes sense.

SilverAvocado profile image
SilverAvocado in reply toButterfly87x

My approach would be to give yourself a break. If you're looking after two little kids you are probably doing a lot of activity anyway. Resting more will probably benefit you more than adding extra activity. Just see if you can cut out some of the most active things you do each week, or reduce them down to the less active version.

Butterfly87x profile image
Butterfly87x in reply toRockyPath

I’ll take a look at these supplements thanks, I have heard about them before but never tried them so that might be worth a shot.

Lora7again profile image
Lora7again in reply toRockyPath

I dare not exercise at the moment because my heart starts beat too fast and I cannot slow it down.

RockyPath profile image
RockyPath

You definitely don’t want to press yourself to injury, but movement is beneficial in many ways, as this recent study shows. ncbi.nlm.nih.gov/m/pubmed/3...

Lora7again profile image
Lora7again in reply toRockyPath

I usually walk everywhere but I do not exercise

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