Confusing symptoms : HI, been on a few times, I... - Thyroid UK

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Confusing symptoms

pelakey1
pelakey1

HI, been on a few times, I have a confusing symptom that I dont know if anybody can shed any light on. Firstly i'm getting weird bicep spasms so theres that, but the main question is related to my Hashimotos, or is it, my TPO levels were high which my endocrinologist said was most likely hashi, which other doctors have supported, but another marker for that is weight gain, and i am losing weight FAST

I do have a swallowing problem which limits certain foods but i've been eating alot more lately to try to compensate for lack of breadstuffs, biscuits, cakes, pizza etc.

the rapid weight loss seems to lend more weight to a possibility of graves disease, so i guess the main question is, can I have high TPO and graves disease?

30 Replies
SlowDragon
SlowDragonAdministrator

You’re on levothyroxine because you have Hashimoto’s, autoimmune hypothyroidism

As per previous post, you need to get TSH, Ft4 and Ft3 tested together

Remember to stop taking vitamin B complex a week before test

Do test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Come back with new post once you get results

pelakey1
pelakey1 in reply to SlowDragon

so, not too sure about the weight loss then?

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Majority of Hashimoto’s patients gain weight but a significant minority struggle to maintain weight or loose weight

Poor gut function, reduced appetite, gluten intolerance or coeliac disease all common

Have you had coeliac blood test done yet

pelakey1
pelakey1 in reply to SlowDragon

Am seeing my gp on friday and will ask for it.. I'm losing weight fast. 11kg in under a year and 2 in last 2 weeks eating well.. I'm not going to the gym at mo so that makes a difference but even so..

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested?

Important to maintain GOOD vitamin levels

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

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

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

pelakey1
pelakey1 in reply to SlowDragon

Am taking supplements for all these things as was recommended by u guys last week when I posted all of my results to date..

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Did you test first

pelakey1
pelakey1 in reply to SlowDragon

Sorry, test what first?

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Sorry, I should have looked at previous posts....yes you did

B12 546 NG/L (179)

FOLATE 6.4 UG/L (3.9 - 20)

FERRITIN - 232 UG/L (30 - 400)

VIT D - 58 NMOL/L (59)

So low folate and vitamin D

pelakey1,

Yes, it is possible to have TPO antibodies (and thyroglobulin antibodies) with graves disease.

Difficulties in swallowing is a classic symptom of a Hashi attack as could be a goitre (lump) or inflamed thyroid tissue. If you are experiencing a Hashi attack the symptoms could be similar to graves disease, ie weight loss, increased appetite, rapid heartbeat, heat intolerance.

For a graves diagnosis you will need to be tested for antibodies TSI (Thyroid Stimulating Immunolglobulin) and/or TSHRab (Thyroid Stimulating Hormone Receptor) but firstly having a comprehensive thyroid hormone test (TSH, FT4,FT3) as Slow Dragon has suggested will give you and your doctor more idea of what is going on.

How are you feeling?

pelakey1
pelakey1 in reply to radd

Thankyou. Truth is I feel pretty fed up, I keep losing weight, I've had enlarged thyroid for almost a year, my dysmotility means if takes an hour to finish a meal and having disequilibrium sucks.. I cant get more than 6 hours kip no matter what I try and it's often 5 or less.. ta for asking..

pelakey1
pelakey1 in reply to radd

I should also add my swallowing issue is constant. Doctors have investigated but no one can tell me the cause yet.. :)

radd
radd in reply to pelakey1

pelakey1,

The effects of Hashimotos that is inadequately treated can be far reaching and both dysmotility and disequilibrium could be a result of. When first medicating thyroid hormone replacement I suffered terrible vertigo & tinnitus, but after addressing nutrient deficiencies and all gut issues, meds began working better and both slowly disappeared.

pelakey1
pelakey1 in reply to radd

Thanks.. I've been on levo for many years with no extra obvious symptoms but only really now am I getting all this other stuff so I dont know if it's to do with meds.. I've also had some panic attacks since all this started.. but I seem to be winning that one battle.

radd
radd in reply to pelakey1

Panic attacks and anxiety can be also connected via too much adrenal activity (cortisol, adrenaline, etc) that are supporting compromised thyroid hormones. Are you menopausal or going through any hormonal changes that could have exacerbated your symptoms?

A good read is 'Your Thyroid and How To Keep It Healthy' by Dr Barry Durrant Peatfield that explains how everything ties together, and a prudent first step would be to get all thyroid hormone levels tested.

pelakey1
pelakey1 in reply to radd

Just thyroiditis. And the stress that came with having nodules and suddenly not being able to swallow properly.. and the lack of answers for everything.. I've had brain scans, mri scans for neck.. swallow tests.. still no answers..

radd
radd in reply to pelakey1

pelakey1

Sometimes we have to look for our own ☺️

pelakey1
pelakey1 in reply to radd

Been doing that for 10 months ;)

SlowDragon
SlowDragonAdministrator

Lump in throat sensation can be due to poor conversion of levothyroxine (Ft4) into Ft3

Many medics think lump in throat is “all in the head” ....globus pharyngeus

medicalnewstoday.com/articl...

Many thyroid patients find its associated with low Ft3

It frequently disappears completely when thyroid patient gets prescribed T3 alongside levothyroxine

You need to get TSH, Ft4 and Ft3 tested together

Cheapest option is via Monitor My Health

Remember to stop taking vitamin B complex a week before ALL Blood tests as biotin can falsely affect test results

Thyroid testing should always be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

pelakey1
pelakey1 in reply to SlowDragon

yes, mine has been looked at and called a dysmotility, it has been identified that my swallowing system does not work properly anymore, there is a malfunction in how the 3 parts of my swallowing connect, but as yet they can't tell me why.

It was my sudden swallowing issue that first caused me to go to the doctor cos food was getting stuck all the time and that is not fun!! in looking at that they found my nodules and thyroiditis, disequilibrium followed about 4 months later.

It is believed by all physicians I have seen that the swallowing is unrelated to thyroid and may not be fixable.

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Personally I found swallowing and things getting stuck in throat stopped almost instantly when T3 was prescribed

Yes ideally retest thyroid 6 weeks after starting vitamin supplements

But if desperate, test now

pelakey1
pelakey1 in reply to SlowDragon

Ok, i've never had a t3 test and am happy to test it now and test it again down the track after the 6 weeks on new vitamins, do you advise this?

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Yes .....it’s not too expensive at £26.10

pelakey1
pelakey1 in reply to SlowDragon

cool, where do i buy it from again?

SlowDragon
SlowDragonAdministrator in reply to pelakey1

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

pelakey1
pelakey1 in reply to SlowDragon

getting an error on that page

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

SlowDragon
SlowDragonAdministrator in reply to pelakey1

Try again....working for me

pelakey1
pelakey1 in reply to SlowDragon

ordered

just a note for your info: dizziness might be this

vestibular.org/article/diag...

pelakey1
pelakey1 in reply to SlowDragon

I have been advised by you guys to get the t3 test but also advised I should not do it yet as I have started taking new supplements such as the recommended igennus b complex vitamin.

pelakey1
pelakey1 in reply to pelakey1

sorry, being dumb, sorted it now

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