Thyroid UK
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Coping with hypothyroidism

Hi I am new my name is Rachel I feel embarrassed to write this but having problems coping with hypothyroidism

TSH 6.36 (0.2 - 4.2) free T4 13.8 (12 - 22)

Thyroid peroxidase antibodies >1000 (<34)

Thyroglobulin antibodies 286.3 (<115)

taking 50mcg levothyroxine diagnosed 2013 thanks

33 Replies
oldestnewest

Hi Rachel, welcome to the forum.

Members are happy to help but we need more information please.

What do you mean by having problems coping with hypothyroidism?

Do you still have symptoms?

When were you diagnosed?

What are your latest results?

What thyroid meds are you on?

Do you have raised antibodies - Hashimoto's?

Have you had vitamin and minerals tested?

Post any results you have and please include the reference ranges.

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I just feel confused about what to take because I saw a nutritionist a while back and she said I was low in iodine. I have symptoms of hypothyroidism, was diagnosed 2013 and I take 50mcg levothyroxine

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Don't feel embarrassed. We're all in the same boat as you. Thyroid disease can feel humiliating because if our thyroid hormones are out of balance, it feels like we are not ourselves and we know we're not really like that. We want our old selves back again. The point of taking levothyroxine is to become symptom free and achieve a normal life. Probably something is out of whack.

Have you got your latest blood test results? If so then post them here and we'll try to help you work out what's going on.

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TSH 6.36 (0.2 - 4.2) free T4 13.8 (12 - 22) taking 50mcg levothyroxine thanks

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Thyroid peroxidase antibodies >1000 (<34)

Thyroglobulin antibodies 286.3 (<115)

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As you are being treated for hypothyroidism don't take iodine.

You have thyroid antibodies which means you are positive for Hashimotos thyroiditis which doctors call autoimmune thyroiditis. Taking iodine can make this condition worse.

Right away I can see that one of your problems is that your dose of levothyroxine is too low and you need a dose increase. 50mcg is a starter dose and you need to increase by 25mcg and retest in 6 weeks and increase and so on until you reach TSH around 1 and feel well.

You also need to have your vitamin levels tested and then post them here for good advice about what to do.

Ask your GP to test:

B12

Folate

Ferritin

Vitamin D

All of these can be low in people with thyroid conditions.

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Ok thanks I am reluctant to increase because I have recently gained weight which my parents said I needed to do and by increasing I am worried I will lose weight again

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Read my post lower down but you've likely lost weight because you have been feeling so unwell. People can gain or lose weight on the correct dose of levothyroxine.

It is a myth that we all gain weight when underdosed. Some people lose weight.

However, as you have Hashimotos your blood test results will vary and you may have spells when the antibodies are very active and this will release a lot of thyroid hormone which will make you feel like you are overactive. When this happens you may find you lose a little weight but then it will settle down and you will become hypothyroid again as you are now and you will need to increase your dose again.

It's best NOT to increase or decrease levothyroixne by more than 25mcg at a time or at the most by 50mcg or you will feel very unwell.

Read more about Hashimotos on Thyroid UK's website. People with Hashimotos on this website say that the best way to reduce flare ups of thyroid antibodies is to keep TSH about 1 so that thyroid medication is sufficient but you need to read up as much as you can about it.

thyroiduk.org/tuk/about_the...

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Thanks have always been thin even before diagnosis so this weight gain is new to me and I want to keep it for as long as possible

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Well, you will have more chance to keep weight steady if you correct your vitamin deficiencies. Your GP is not helping you.

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List of symptoms copied from Thyroid UK site

Tiredness

Cold extremities

Slow movements

Slowed Achilles reflex

Slow speech

Pins & needles

Breathlessness

Palpitations

Anaemia

Lack of co-ordination - especially of hands and feet

Insomnia

Loss of libido

Repeated urinary tract infections

Albuminuria (protein in urine)

Upper respiratory tract infections

Poor response to treatments

Candida

Heavy eyelids

Hoarse voice

Goitre (enlargement of the thyroid gland)

Muscle cramps and weakness

Joint stiffness

Heat/Cold intolerance

Diminished sweating

Low basal temperature

Hypoglycaemia

ADHD

Vertigo

Balance problems

Dizziness

Puffiness of:

Eyes

Face

Hands

Feet

Ankles

Difficulty swallowing

Sore throats

Swollen tongue

Scalloped tongue

Choking fits

Dry mouth

Sensation of lump in throat

Post-nasal drip (PND)

Numbness in legs, toes, arms, fingers, back

Body hair loss

Head hair loss

Brittle hair

Eyebrow loss (outer third)

Eyelash loss

Nail brittleness

Flaking

Skin

Dry skin

Flaky skin

Coarse patches

Pallor (yellow tinge to skin)

Boils and spots

Eczema and psoriasis

Bruising

Pain

Migraines

Pressure headaches

Back and loin pain

Wrist pain

Carpal Tunnel Syndrome

Foot Pain

Burning Feet Syndrome

Digestive Problems

Alcohol intolerance

Constipation

Haemorrhoids

Irritable Bowel Syndrome (IBS)

Abdominal distension/flatulence

High Blood Pressure

Slow / weak pulse

Cessation of periods (amenorrhoea)

Scanty periods (oligomenorrhoea)

Heavy periods (menorrhagia)

Low fertility

PMT (premenstrual tension)

Visual Disturbances

Poor focusing

Double vision

Dry eyes

Gritty eyes

Blurred vision

Hearing Problems

Noises in ears (hissing)

Deafness

Tinnitus

Panic attacks

Memory loss & confusion

Mental sluggishness

Poor concentration

Noises and voices in head

Phobias

Loss of drive

Nightmares

Easily upset

Wanting to be solitary

Mood swings

Depression

Nervousness/anxiety

Personality changes

Feelings of resentment

Lack of confidence

Thanks

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Many of these are hypothyroid symptoms but some of these can also be attributed to low vitamin levels. Both low ferritin and low B12 can cause breathlessness. Tinnitus is a symptom of low B12 as is numbness in toes, fingers etc. Joint and muscle pain could be low vitamin D. Insufficient folate may cause a range of symptoms too so get your vitamins checked out. Your TSH is high but it may not account for all your symptoms.

Take your symptom list to GP and point out that some of your symptoms may be attributed to low vitamin levels. When we have thyroid disease we need our vitamin levels to be mid-range and B12 to be near top of range to feel well. If they are bumping along the bottom of the NHS range or below our levothyroixne does not function well and we don't get the full benefit even when our thyroid hormone is sufficient.

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Thanks you for listing and you are not alone.I have recently gone from 50mcg of Levo to 75mcg and the brain fog improved overnight. My weight is more stable too. Keep asking questions............,its good to know whats happening to us all! BTW am still having tests!

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rachelbeamont

TSH 6.36 (0.2 - 4.2) free T4 13.8 (12 - 22) taking 50mcg levothyroxine

I have symptoms of hypothyroidism, was diagnosed 2013

Why are you only on 50mcg Levo if you were diagnosed 4 years ago? That is a starter dose.

Have you had dose changes? If so why? What were your results at the time and the reason given for changing your dose?

You are currently undermedicated and need an immediate increase of 25mcg Levo, with retesting and 25mcg increases every 6 weeks until your symptoms abate, you feel well and your TSH is around 1 or below with free Ts in the upper part of their reference ranges.

**

Thyroid peroxidase antibodies >1000 (<34)

Thyroglobulin antibodies 286.3 (<115)

Has anyone told you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it.

The antibody attacks cause fluctuations in symptoms and test results. Maybe this is why you've had dose changes.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

**

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. Have you had vitamins and minerals tested? Post results if so for

Vit D

B12

Folate

Ferritin

Iron Panel

Full Blood Count

and say if supplementing and with what dose.

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Ok thanks I have been on more but have never been consistent with my dose because I am reluctant to increase due to being thin. I have recently gained weight which my parents said I needed to do and by increasing my dose I am worried I will lose weight again. They all now say I look good but inside I feel awful despite the recent weight gain

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Rachel

Part of your problem is Hashi's, you can have hypo and hyper symptoms. So you can be suffering all those hypo symptoms you have listed but be thin/lose weight as in hyper.

As I said, absorption problems are generally connected with Hashi's, and if you have malabsorption you wont be absorbing any nutrients and that will be contributing too.

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Thanks have always been thin even before diagnosis and this weight gain is new to me so I want to keep it for as long as possible

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Ferritin 41 (15 - 150) currently iron deficient

Folate 2.3 (2.5 - 19.5) GP said only slightly out of range

Vitamin B12 283 (190 - 900)

Vitamin D 26.1

(<25 severe vitamin D deficiency

25 - 50 vitamin D deficiency

50 - 75 vitamin D may be suboptimal

>75 adequate) taking 800iu D3

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Are you recieving any supplements for these? I'm sure SeasideSusie will respond but 800iu vitamin D is not sufficient, neither is it the correct treatment as your vitamin D is under 30. You need loading doses. Folate is under range. B12 much too low. Ferritin needs help too.

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Thanks I had an iron infusion in 2016. That was the only thing that corrected my anaemia and nothing for B12 or folate

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Rachel

Ferritin 41 (15 - 150) currently iron deficient

What is being done about this? If you have confirmed iron deficiency anaemia then the treatment is 2 or 3 x ferrous fumarate daily. If nothing has been prescribed you must speak with your GP and get appropriate treatment - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

Folate 2.3 (2.5 - 19.5) GP said only slightly out of range

And you need to ask your GP why there are ranges if they're going to be ignored. You are folate deficient. Folic acid is prescribed for folate deficiency.

Vitamin B12 283 (190 - 900)

Do you have any signs of B12 deficiency b12deficiency.info/signs-an... If so then you need to post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc quoting your folate/B12/ferritin results along with your iron deficiency information and any signs of B12 deficiency you may be experiencing.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

**

Vitamin D 26.1 taking 800iu D3

You are 1.1 away from severe deficiency. Were you below 25 when originally prescribed the 800iu D3? You are actually supposed to have loading doses with your level - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

As you have Hashi's, when you come to buy your own supplement, then for best absorpion an oral spray is recommended, eg BetterYou who do a D3 spray and a combined D3/K2-MK7 which casn save buying a separate K2 supplement.

**

Check out SlowDragon's reply to this post for information and links on how to address gut/absorption problems healthunlocked.com/thyroidu...

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Thanks I had an iron infusion in 2016. That was the only thing that corrected my anaemia

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If you are still iron deficient then something needs to be done. If you were under a haematologist then some of them require the patient to be re-referred when ferritin falls below 50 for another infusion. You need to speak to your GP about this. But you can still include lots of iron rich foods in your diet.

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I am not medical in anyway but I have had hypothyroidism for 16 years why are you on such a low dose please, your test shows you are clearly hypothyroid and you need to bring the TSH right down to stop the attack on your thyroid

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First you can be so thin because of your Hashimoto's

Hashimoto's badly affects the gut, stopping nutrient absorption.

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

You could ask GP for full testing for coeliac, but even if test is negative you will very likely benefit from strictly gluten free diet

Don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Essential to correct low vitamins, as they stop Thyroid hormones working

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Read as much as possible about Hashimoto's. You are going to have to take control.

Essential to always take stready dose of Levothyroxine. Don't chop and change.

You are very under medicated and need 25mcg dose increase. Retesting after 6 to 8 weeks. Likely to need further increases over time. We have to increase slowly, giving body time to improve with each dose change

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

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sorry to butt in on a different topic but i am one of these people that suffer with terrible health anxiousness, I am due to go for my fourth blood test as first went on 50mg levo , next test came back norm then test after that said was undermedicated so went on 75mg now due for follow up blood test but because i am so anxious about anything to do with health i am now working myself up that i have thyroyd cancer as have read hashimotos can lead to this, omg i am freaking myself out so bad but know one understands that i suffer so bad from anything medical . please excuse my spellings

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Anxiety is a classic sign of being hypo, so its very common.

Having Hashimoto's doesn't lead to thyroid cancer.

They are separate issues. Thyroid cancer is also one of the most successful cancer treatments (not that you have it, so don't worry)

You are probably just ready for next dose increase.

Thyroid tests should be redone 6-8 weeks after any dose change.

How long since you increased to 75mcgs?

Tests should ideally be as early as possible in morning and fasting. Don't take Levo in the 24 hours prior to test. Delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. This is patient to patient tip. GP will be unaware.

Have you had vitamin D, folate, ferritin and B12 tested? its very common for these to be too low. They need testing and supplements if low. This helps thyroid hormones to work better. Post vitamin results on new post of your own for advice

Also if you have Hashiomoto's very very many find that strictly gluten free diet helps. You don't need to be coeliac to still benefit. You will see masses of posts on here about gluten. You don't need any gut symptoms

We need to slowly increase dose in 25mcgs steps....waiting while body adjusts. Aiming for TSH around one and FT4 towards top of range, FT3 at least half way in range

Always take Levo on empty stomach, nothing apart from water for an hour after. Many take on waking, but can be more effective taken at bedtime

Always stick on same brand of Levo, once you find the one that suits you best. Different brands work differently for different people and they are not bio equivalent (ie you get different effective dose with different brands)

Hypo Symptoms

thyroiduk.org.uk/tuk/about_...

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thank you so much for your kind reply, i have been on 75mg for about 7 weeks now but one brand is teva the other murcery pharma i was on 50mg teva and that suited me but when increased to 75mg the 25mg are murcery pharma and experience heart palpatations on them .

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Not sure if Teva make 25mcgs dose.

You could ask Pharmacist

If not, you can take 100mcg one day and 50mcgs next day - it works out the same dose and T4 is storage hormone.

But you may find you're ready to increase dose to 100 daily anyway after next test.

essential to test vitamins, if they are too low it stops thyroid hormones working well. GP should test, but if very unhelpful there are private test options.

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thank you, i will keep you informed , was thinking of doing the 100 the 50 but was to scared as thought was not ok to do that but as you say t4 is a storage hormone makes sense

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Have to say i feel there is no one that truely understands how we feel, when i first went to the doctors i thought i was starting the perimenapause stage i had two really scary hot flushes like never experienced before and went all dizzy like was going to pass out my heart was racing and it terrified me, it happened again over next few days and i was so unwell i thought must be my heart , it all was a sudden onset of symptoms i went to the doctors and she said she would test my thyroid as she said i could be hyper and when it came back borderline under active she was like oh i did not expect that as those symptoms are not from under active , she was not much help at all and i felt so alone and can only say thank god for this site as i think its only the people that are experiencing the many different symptoms that go with both hypo and hyper know what their body is telling them, even when my results came back they were borderline and she said she would not treat me straight away, i then went to see another doctor two days later who said no you are under active and need to start treatment now ,

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Hi Jamesdan14, I am not medically trained neither do I have the medical knowledge or experience like others on this site. But it sounds like you may suffer from anxiety and panic attacks? I have experienced symptoms similar to yours but more extreme as I felt very unwell in my whole body and this would last for a couple of days. Before I was diagnosed with Hashimoto's in 2015 my useless Endo in 2013 suggested I was suffering from anxiety and panic attacks, with my body producing too much Adrenaline. He suggested my GP start me on Beta Blockers. in the end I was on 160 mg Propanolol daily. While my symptoms appeared to lessen - I now know they were not the complete answer. Having taken advice from this site I have now come off this medication as the very high dose prevents absorption of Levothyroxine. I do keep a 10 mg Propanolol dose for use in emergency anxiety situations.

Please talk with your GP as it appears there is a link between anxiety and Hypo. I have found this site to be enormously helpful in helping me take control of my own body. I have listened, and learnt much. It is sad but common that the GPs have little knowledge, time or money to give to us to fully understand what we are going through. Good luck.

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thank you so much for your reply, you are right the doctors do not seem to understand us do they, it is so hard as you sometimes feel as though you are going mad and no one around us seems to understand, this site is amazing and so glad we have it

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