been feeling short of breath and almost restric... - Thyroid UK

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been feeling short of breath and almost restricted as if breathing through a straw sometimes...feeling of a lump n my throat.

smilas profile image
18 Replies

doctors all told me it was anxiety and vagus nerve dyfunctioning on right side of my body. I also have tinnitus and restricted hearing on my right side that also started from my head injury ( motorbike accident), Whole right side is stiff, struggling or too petrified to move my neck as I don't know what's going on in there. Jaw clenching...had for years following motorbike accident and has become worse since covid started then had finger bitten off by a horse....got digestion problems, constipation, bloating, extreme panic, feeling of trapped fluid in my ears, pain in my right shoulder and jaw, confusion, lack of ability to focus, head spinning...

all these symptoms I've had for well over a year now, just told to take thyroid s and lorazepam for anxiety and panic...

demanded an ultra sound 4 days ago and turns out I have a nodule on my parathyroid gland...I'm pretty fuming as docs wouldn't listen to me...

how serious is this? Had calcium test and it is totally normal. Could this nodule be related to all the other symptoms or have I been building up more psychosomatic sensations because i knew something was wrong? It is 1.7cm x 1.32.

Can you live with it or does it have to be removed? Is there anything I can take to manage it? rather not have to have surgery...

I'm also on Fit D3 +K2, Magnesium, Vit B + folate, iron from 2 tablespoons of molasses a day and Thyroid S 60mg and lorazepam 2mg per day

Any suggestions??

pretty freaked out...

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smilas
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18 Replies
SarahJane1471 profile image
SarahJane1471

Hi 👋 I can’t answer your issue about your nodule but I’m sure someone on here will come along with some great advice. I am however very knowledgeable about anxiety as I have had PTSD for over 20th. Just wanted to say that there is so much support in this group I’m sure they will ease some of your worries x

tattybogle profile image
tattybogle

There are a few people on here who are knowledgeable about parathyroid issues , so i'm sure they'll be along. In the meantime , i found this site very helpful for understanding parathyroid issues, (which can be a bit complicated to get your head round ;) ). parathyroid.com/

So if you are taking "Thyroid S", i assume you also have hypothyroidism.

If you give us some more detail about that ie. diagnosis and latest Thyroid blood test results, then it may help make the replies more appropriate .

Some of the symptoms you describe sound more like hypothyroid symptoms, than parathyroid symtoms (eg .constipation)

SlowDragon profile image
SlowDragonAdministrator

What are your most recent thyroid and vitamin results

Symptoms suggest you may be under medicated

Always test as early as possible in morning before eating or drinking anything other than water

Day before test split NDT into 3 smaller doses taking last third daily dose 8-12 hours before test

What vitamin supplements are you currently taking

Important to regularly retest vitamin D, folate, ferritin, B12

smilas profile image
smilas in reply to SlowDragon

I'm taking iron ( via 2 tablespoons of molasses), Vit D3 +K2, Vit B12 Methyl plus P-5-P(Vit B6), Mehtyl Folate, Magnesium, Thyroid S 60mg per day

TSH is 94

FT3 1,5

FT4 8.6

Antibodies TPO 5000 ( these were at 2227 before I started taking the medication by the way so have risen...)

Hashimotos and recent parathyroid nodule. Can this nodule cause pain all into right collarbone, up the neck under the jaw, cause clenching and grinding, lack of mobility of my right arm? Or is it more relate to my horse bitten finger ad nerves? Someone please help me...

SlowDragon profile image
SlowDragonAdministrator in reply to smilas

Please can you check that TSH result is correct and add ranges on these results (figures in brackets after each result)

If TSH is really 94 you’re extremely hypothyroid

Make urgent appointment with GP

smilas profile image
smilas in reply to SlowDragon

they're correct ad tests done a couple of weeks ago, been like that for months despite the medication...FT3 and 4 have got better but tsh is not coming down...bear in mind I'm also extremely traumatised from finger amputation and head injury which all affect pit functioning I think too...it's a mess...

SlowDragon profile image
SlowDragonAdministrator in reply to smilas

What’s ranges on Ft4 and Ft3 ….the results look far too low

Normally if pituitary is affected by head trauma this causes low TSH

How much Thyroid S are you currently taking, you need dose increase or try adding something else

Have you tried levothyroxine.

Standard starter dose of levothyroxine is 50mcg

ESSENTIAL to regularly retest iron, ferritin, folate B12 and vitamin D too

Low iron/ferritin extremely common when very hypothyroid and low iron/ferritin often causes breathlessness

When were vitamin levels last tested

Have you had thyroid antibodies tested?

smilas profile image
smilas in reply to SlowDragon

FT3 <1.5 ( 1.71-3.71 pg/mLFT4 L 8.6 (10.6-19.4 pmo/L

These have substantially increased from being 0.05 (FT3) for example.

TPO Antibodies as mentioned are 5000

These results are from 1st Jan

SlowDragon profile image
SlowDragonAdministrator in reply to smilas

And you remain dangerously hypothyroid

January result obviously verging on hypothyroid coma

What’s your endocrinologist doing?

They should be managing this far better

See GP and get vitamin levels tested

smilas profile image
smilas in reply to SlowDragon

how can i be verging on hypothyroid coma when ft3 and 4 are increasing? Naturopathist did live blood analysis hence prescribed me those vitamin supplements which I'be been on for 2 week now, can't feel any effect yet? ...what vitamins should I get tested? already know lymphocytes are low, as is iron

SlowDragon profile image
SlowDragonAdministrator in reply to smilas

Gp should do full iron panel test for anaemia, B12, folate and vitamin D

Plus full thyroid panel

helvella profile image
helvellaAdministratorThyroid UK in reply to smilas

I'm taking iron ( via 2 tablespoons of molasses)

A quick check suggests that there are 4.7 milligrams of iron in 100 grams of molasses. Or .9 milligram per tablespoonful.

In other words, not a lot. Certainly not enough if you are iron deficient.

smilas profile image
smilas in reply to helvella

that's what my acupuncturist recommended as I'm taking so many supplements already...any idea how many tablespoons per day I should take to bump it up then??

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts….you were left woefully under medicated on levothyroxine…..TSH way up over 50 and Ft4 and Ft3 below range

What was highest dose levothyroxine you ever increased to

The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until TSH is under 2, Ft4 and Ft3 at least 50-70% through range

Approx how much do you weigh in kilo

Guidelines on eventual dose levothyroxine required is likely to be 1.6mcg levothyroxine per kilo of your weight per day

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

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

If taking NDT, last 1/3rd of daily dose approx 8-12 hours before test

Highly likely you have extremely low vitamin levels with such terrible thyroid levels

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s. ESSENTIAL to run coeliac blood test.

smilas profile image
smilas in reply to SlowDragon

I was started on 25mg Thyrax in July, but after 6 months and an increase to 50g there wass till no improvement. So I saw a Naturopathic doc that said Thyrax wasn't working so put me on Thyroid S which I believe is like Armour...Ft3 and 4 have increased quite a bit but ash remains the sameHaven't have coeliac test, no one recommended that...

I'm on 75 mg of Thyroid S as of today but i've felt pretty terrible after taking it...I'm also taking lorazepam for anxiety and nerve relaxant because I'm suffering major panic attacks and spasms and my whole body is like a plank of wood, so rigid, I'm petrified...and now parathyroid nodule, even more petrified...

also got ear ache and tinnitus, chronic sinusitis...list is endless...5 diarrhea trips today, and just had my 4 parasite cleanse a they weren't leaving...

SlowDragon profile image
SlowDragonAdministrator in reply to smilas

Standard starter dose of levothyroxine is 50mcg

Bloods should be retested 6-8 weeks after each dose increase

Dose is increased upwards as fast as tolerated until TSH is under 2

Usually that’s anywhere between 100mcg and 200mcg daily……but we have a few members on even higher doses

You know you have high antibodies this is known by medics here in UK as autoimmune thyroid disease.

Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre).

Both variants are autoimmune and more commonly just called Hashimoto’s

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

Low vitamin levels affect Thyroid hormone working

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 a further 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

Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out

If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)

If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten 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

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.

RedApple profile image
RedAppleAdministrator

smilas' 'iron from 2 tablespoons of molasses a day '

Gosh, that is a LOT of SUGAR to take every day for a very small amount of iron! (In the UK, we call this black treacle)

en.wikipedia.org/wiki/Molasses

tattybogle profile image
tattybogle

Hi , smilas

in case it helps anyone with replies i've tried to summarise your history /results here :

March 2016. (London.)

Motorbike accident , Traumatic Brain Injury. fractured scull & jaw , trauma to right shoulder, loss of hearing right ear , loss of taste /smell. Ear operation .

" I was displaying a goiter and MRI brain scans revealed a slightly enlarged pituitary gland but neurologists said nothing to worry about. The goiter prompted them to do blood results, which suggested Hypo due to TSH reading".

TSH 150

FreeT3: 1.87 pmol/l

Free T4: 2.23 pmol/l no ranges , but Doctor comment 'low, but not ridiculously low '

Not aware of any hypo symptoms, tired ,emotional , goitre.

Given Levo 25mcg , but felt worse so stopped after 4 days. "felt more restless, panicky almost speeded up heart rate and felt sick / nauseous every time I ate "

Very active .

"course of chinese medication to balance thyroid for 12 weeks" (stopped in sept 2016)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

21 Dec 2016

T3 / 37 / ngdl / 60-200 (results from Thyrocare in Goa, India)

T4 / 1.4 / mg/dl / 4.5-12

TSH ^150 [0.30-5.5]

FT3 1.15 pgml [1.7-4.2]

FT4 0.37 ngdl [0.70-1.8]

Jan 2017. " it's been difficult however to gauge ptsd, dizziness and nightmare/anxiety attacks due to injury or hypo? ... last couple of days have I suffered quite extreme emotional upset lots of crying, anxiousness/panic, dizziness and nightmares but it has been quite a year recovering from the injuries .... My thyroid was slightly enlarged but has shrunk over the last few months "

Told at risk from hypothyroid coma, But goitre had reduced in size . Thyroid ultrasound 'normal' ,and Felt better than had for previous 8 months .

31 March 2017

T3 / 58 / ngdl / 60-200

T4 / 2.1 / mcdl / 4.5-1.2

TSH 102.40 [0.30-5.5]

FT3 1.8 pgml [1.7-4.2]

FT4 0.34 ngdl [0.7-1.8]

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

January 2018

T3: 39 (60-200)

T4: 1.1 (4.5-12)

TSH 131 (0.3-5.5)

Ft3 1.66 (1.7-4.2)

Ft4 0.46 (0.7-1.8)

March 2018

T3: 61

T4: 2.69

TSH: 54.70

Ft3: 1.69 [0.3-5.5]

Ft4: 0.59 [0.7-1.8]

"I'm.a yoga instructor and so I've been working really hard with nutrition and diet changes, and various yoga therapy/meditation and vibrational therapies and techniques. Had my tsh checked a few days ago and it's gone down from TSH 150 to TSH 54..so something I'm doing is working?"

March 2019

"I've been managing it mostly with a big diet change, and lots of mind & body work . It fluctuates along with moods, energy levels and stress levels but I'm pretty much able to carry out daily activities, teach yoga twice a day and just sometimes need an afternoon nap- which I think is just fine for me."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

May 2021

Finger bitten off by horse.

July 2021

25mcg Thyrax (Levothyroxine ?)

1st October 2021

Anti TPO 5000, ( whereas was 2227 before I started the meds)

FT4 0.37ng/dL ( 0.70-1.48)

TSH 94

Dose increased to 50mcg Thyrax (Levo ? )

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dec 2021 (15th)

"experiencing symptoms of shortness of breath, irritability, spasms.. panic and anxiety, muscle aches, constiption, feeling of something stuck in my throat on right side, jaw clenching, ear pain and blocked-ness, tinnitus, sever neck ache on right side,( horse bit right middle finger)

Doctors said I HAD to start taking Thyrax because my thyroid had inflamed from the trauma, but in 6 months I'm barely functioning as a human being, can't go out the house, shortness of breath, feel in constant freeze mode, survival mode, so they also put me on lorazepam. Neither meds seem to be helping and I spend my days taking hot and cold baths, breathing for hours and hours trying to relax the muscle spasms, trying to focus as my brain seems so traumatised I can't sit still, relax or focus on anything with the fear of what is going on inside my body. Having sensations of electricity continuously moving roundly body and right side of neck is almost frozen in pain, only relieved by lying down with a damp cloth .... Pain in my neck I mean even sensitivity and feel like I can't even touch it as I feel like choking. Docs here are putting down to anxiety?."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1st Jan 2022

TSH 94 are these results from 50mcg Thyrax ?

FT4 8.9 ... what are ranges ?

FT3 1.5 ... is it these ones ?

"FT3 1.5 ( 1.71-3.71) pg/m FT4 L 8.6 (10.6-19.4) pmo/L "

"These have substantially increased from being 0.05 (FT3) for example."

When was your FT3 0.05 ?

18th Jan 2022

"I recently changed to .... Thyroid-S 60 mcg /day . 10 days in I'm suffering huge panic attacks and dissociation- had these before, but was hoping Armour would help calm these down a bit...panic attacks are lasting all day, shortness of breath, complete zoning out where my brain shuts down..

I'm trying to come off the lorazepam slowly by adding valerian for my anxiety "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

4 days ago

Ultrasound showed nodule on ? parathyroid gland 1.7cm x 1.32.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Today

increased to 75mcg Thyroid S

(SlowDragon *note , latest results seem to be from taking 50mcg 'Thyrax ' Levo ? ..

60mcg Thyroid-S only started on 8th Jan , i think )

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