Hashimoto’s advice: Hi all, I’ve posted here a... - Thyroid UK

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Hashimoto’s advice

Curtis90
Curtis90

Hi all,

I’ve posted here a while ago. To cut my story short I fell ill around 11 months ago gradually over the course of a week or two it got worse and worse.

I’ve had everything checked by my GP, colonoscopies, MRI and CT scans and been to see numerous specialists but the only two results which have come back as irregular are my thyroid antibodies (TPO) and my faecal elastase result (which are low, twice tested, once 92 the other 120).

After advice from this site I’ve been gluten and dairy free since July. Gave me small energy benefits.

I’ve also been supplementing B12, Vit D, Zinc and Selenium which helped slightly too.

I’m still no where near the normal me though and my GP and endo on the NHS won’t prescribe me levothyroxine. I believe the main reason is because weight gain isn’t one of my symptoms. Is it a possible for people with hashi’s to have weight loss/or atleast stay at the same weight rather than the weight gain that is usually associated?

That being said I see no option but for me to go alone and attempt to treat myself.

Do you have any suggestions/advice on this?

From all my thyroid tests my TSH always seems to be just slightly above the ranges. So say the range was 1-3.5 mine will have been anywhere between 3 and 6.5.

I’ve only had T3 and T4 tested twice but T4 is middle to high of the range and T3 middle to low of the ranges.

Thank you

45 Replies
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What Consultants are you under? What's being said /done about fecal elastase result?

Were you tested for Coeliac Disease (I would have thought so) and had you been eating lots of wheat products before test?

What are your symptoms? I would ask about the abnormal fecal elastase result.

I think I would ask to be referred to an Endocrinologist asap/ urgent.

Write a list of symptoms to show GP.

If you get an urgent referal to an Endocrinologist, hopefully you will be fully tested before being started on the right treatment.

- How high is your TSH now?

Could you get hold of all your results and add them to your posts. Include ranges in brackets and dates of tests. If in UK you can obtain copies of all your medical records free of charge since news regulations 25 May 2018.

You could also ask for an Ultrasound scan of your Thyroid.

Have you had any tests to check out your Adrenal function?

Have you had an Ultrasound scan of your abdomen to check Gallbladder, kidneys & liver. All OK?

I , personally , wouldn't start self -medicating. I would prefer to push for diagnosis first, FULL diagnosis.

Keep going back to GP & pestering for referals & diagnosis.

I also thought that Hypothyroid people all put on weight. However, since joining this forum, I have 'met' a few people who didn't or even lost weight.

Some also have Coeliac Disease and / or Crohn's or Colitis.

ps

Were you tested for B12, Vitamin D, Folate & Ferritin before you started supplements? Could you post any results. Have you been tested for Pernicious Anemia?

Hi Mary,

I’ve seen infectious diseases as my illness happened as I was living abroad (they fully cleared me).

I’ve seen gastroenterology and had a sigmoidoscopy and colonoscopy as well as a CT scan of the abdomen and pelvis and all has been OK.

The faecal elastase result is being ignored now by the gastric as my scans etc show no pancreatic or other organ issues..

My GP has ordered an MRI head test which also returned OK other than sinus issues.

I’ve then seen two endocrinologists and had heaps of tests. Just this last Monday I had more tests to measure adrenaline and to retest all my thyroid’s but I’m awaiting results. I next see them on 24th Dec.

I have been tested for celiac and it came back as negative. I have been strictly gluten free since July also.

My last TSH result was 5.7 (range of 0.2-4).

I was tested for everything I supplemented and it was all in the ranges.

Thank you

Were you gluten free before you had the Coeliac test? That would give a false negative.

You may not have to wait till 24 Dec for results. I would email hospital and requests all records, blood test result, scan reports everything. Pop in to Haematology with a brief letter asking for all bloods results, if that might be quicker.

You can also phone Endocrinologist's secretary and ask for last tests results over phone.

You still haven't had an Ultrasound scan of your Thyroid.

No I was eating gluten before the test.

Yeah I will probably ring to ask but there’s little I can do with the results anyway.

I haven’t and no one has suggested this either. What could this potentially show?

Might just confirm Thyroiditis. But you already have raised Thyroid Peroxidase Antibodies anyway so know you have Hashimoto's Autoimmune Thyroiditis.

Yeah, I’ll certainly ask if it’s an option when I see the endo though thank you.

I just need some help right now and feel like it’s never going to come which was why I was pondering with the idea of treating myself

Why don't you phone Endocrinologist's secretary and ask for recent results? (Also put in formal requests -brief letter or email- for copies of records).

You could ask for a phone call from Endo - say you feel too unwell to wait till 24th Dec.

Alternatively you could see GP who should be able to access results and politely insist on having your symptoms addressed.

Remember that with Hashimoto's, regular Tft results can fluctuate and fall within normal range. However, what's unusual about yours is that your TSH is high but your T4 is also high. Have they commented on your Pituitary Gland? Have you asked for diagnosis for low elastase?

shaws
shawsAdministrator

When you have a blood test for thyroid hormones, do you always get the earliest possible appointment, fasting (you can drink water) and allow a gap of 24hours between your last dose and the test and take afterwards. If not, your results wont be true.

If you follow the above advice then the TSH will be at its highest point and food also reduces the TSH too, so can make the difference between getting an increase or not.Few doctors are aware that the TSH, once on thyroid hormone medication, that the aim is a TSH of 1 or lower with a FT4 and FT3 in the upper part of the ranges. They haven't a clue it would seem.

If you post your latest results with the ranges (or if you didn't follow the 'early as possible and gap of 24 hours' you need a new blood test following the suggestions to get the best possible result.

The following is a list of symptoms - we don't get all thankfully but you probably can tick off quite a number.

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

Curtis90
Curtis90
in reply to shaws

Hi Shaws,

Yeah my previous results were under this guidance but thank you for your message.

I’m interested to see my next results around Xmas time and hopefully convincing the endo to take action..

I wouldn't wait.

Arigna
Arigna
in reply to shaws

I asked my endo a few weeks ago should I be having a blood test before taking my levothyroxine, he said to me it makes no difference. We just get different professional opionions from different endos all the time.

Curtis90
Curtis90
in reply to Arigna

Hi Arigna,

Are you hashimoto’s with normal TSH, T4 and T3 too?

Thanks for commenting.

SlowDragon
SlowDragonAdministrator

If you have high TPO Thyroid antibodies are high and TSH is at these sorts of raised levels (anything over 3 is considered suspicious) AND you have hypothyroid symptoms....your GP should offer a 50mcg three month trial of Levothyroxine

Have you had an ultrasound scan of your thyroid?

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

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Thyroid Uk has list of recommended thyroid specialists around UK

please email Dionne on Monday


tukadmin@thyroiduk.org

Curtis90
Curtis90
in reply to SlowDragon

Hi Slowdragon

Thank you for your response. I asked my GP way back in March for a trial and he refused. He said he’d need a recommendation from an endo. So he referred me but my appointment wasn’t going to be until November with the endocrinologist.

On the back of this news I contacted Donna and found someone in my region to see privately. I saw this endo, did all the tests and he too wouldn’t trial levothyroxine.

Brad07
Brad07
in reply to Curtis90

I haven't put on weight either. I've had an ultrasound which shows damage and my doctor has told me I have autoimmune thyroiditis (hashimoto's) yet no action or meds because like you my TSH is under 10. It's so frustrating! I have a endocrinologist appointment this week I'm hopeful something will come of it. Maybe push for an endocrinologist appointment?

Brad07
Brad07
in reply to Brad07

Maybe a NHS endocrinologist would give you a trial? I don't know, I'm at the same stage as you 🙁

Curtis90
Curtis90
in reply to Brad07

Let me know how you get on Brad and stay strong. Message if you need to chat 👍🏻

All I can let you know is I am newly diagnosed with my first test TSH 9.3 & T4 10 and my next test TSH was 7.2 and T4 10.3 (range for both 0.2-4 & 10-20) antibodies >1300, started levothyroxine 50mcg and lost a stone in 2 weeks!! All seemed to go from around my middle which I’m assuming is inflammation, so in answer to your question yes it’s possible to lose weight....interestingly I found out my results from 1yr previous and TSH was 3.9 T4 was 11.7 antibodies weren’t tested then but I was having loads of symptoms but it was missed and put down to menopause - I ended up with horrible symptoms by the time I was diagnosed which it seems could have been prevented if I was prescribed sooner! Good luck and I hope you get sorted for Xmas xxx

Curtis90
Curtis90
in reply to jamjar67

Thanks for sharing that jamjar.

My question on weight loss though is that I’m not on medication yet but I’m finding it incredibly hard to put on any weight. And interestingly enough I’m very lean around the mid section/hip area.

I’m assuming the faecal elastase result is playing a part in this. I had found a study in which people with hypothyroidism also had low levels of faecal elastase and this was reversed with treatment of thyroxine but it doesn’t mention whether they had issues with gaining weight prior to treatment

Jnetti
Jnetti
in reply to Curtis90

Nothing in your body works properly if you are hypothyroid, so it seems likely your pancreas is affected too. Which could by itself account for your weight loss!

It certainly affects gut and digestion, so treatment would probably ease symptoms even if you have another condition as well.

Hope it gets sorted soon. WHY don't some medics realise that the thyroid affects the whole body and causes all sorts of problems? If they concentrate on getting that sorted you might get somewhere.

Curtis90
Curtis90
in reply to Jnetti

Yeah I agree. It’s such a hard thing to deal with when there’s so many instances that make me think this could be a solution and yet the Dr’s just take little to no notice.

Jnetti
Jnetti
in reply to Curtis90

I wrote a one page letter listing my continuing symptoms and how they affect my life, in order to get an increase of thyroxine in spite of the TSH now being within range. I helped tremendously that the nurse I saw was sympathetic and actually willing to listen.

jamjar67
jamjar67
in reply to Curtis90

this is all so new to me but all I know is I always thought of myself as in good shape and in good health, symptoms accumulated slowly..., I was always told it was perimenopause but no one else I knew seemed to be having quite the amount of symptoms as me....I have always been as regular as clockwork but my digestive system has gone haywire, I remember saying to the Dr that I felt I’d turned into an old woman in the space of a year...., My symptoms have improved since starting the medication but I’m still not right but I think (hope) it’s because I’m undermedicated...I saw my Dr Friday who has increased my thyroxine so I’ll just have to see what happens from here xx

Polly91
Polly91
in reply to Curtis90

Hello Curtis90

I too have been losing weight and my issue is gut related - not enough good bacteria & leaky gut. So what I’m doing is focusing on the gut & taking digestive enzymes to help with absorption. So far it’s not helped gain weight but I’m feeling a bit better.

Good luck

Curtis90
Curtis90
in reply to Polly91

Good luck Polly, I’ve tried enzymes from Holland and Barrett but didnt really help me.

Cg430
Cg430
in reply to jamjar67

Hi jam jar would u mind sharing the horrible symptoms u had prior . I am also and wondering the same ? They chalked it up to meno ? Anxiety stress etc . I am dX Hashi as well ty

jamjar67
jamjar67
in reply to Cg430

I will..., I wrote everything down, I have the list which I took to the GP’s..., I still have it in my car.., my daughter has my car at the mo so I’ll do it tomorrow...I can perhaps photograph it and post it x

Cg430
Cg430
in reply to jamjar67

Great ty !

jamjar67
jamjar67
in reply to Cg430

Sorry for being slow getting back to you..., I have photographed my list but can’t actually work out how to attach it!!...I tried to private msg you but can’t see a facility on that to attach the photos?!?! 🤔

SlowDragon
SlowDragonAdministrator

Sorry you didn't get prescribed

Very important to test vitamin levels, especially if supplementing

You may be low in folate or ferritin

Vitamin D can still be too low if not supplementing at high enough levels or is toxic if taking too much

Getting all four vitamins to optimal levels is important

Curtis90
Curtis90
in reply to SlowDragon

Hi SlowDragon

With all my vitamins previously they were all within ranges. I’ll ask for them all to be retested this month too but below are my last readings..

My ferritin was 88 (22-322)

Folate 13.6 (3-14.4)

B12 589 (211-911)

SlowDragon
SlowDragonAdministrator
in reply to Curtis90

These look ok. ...

Ferritin is a very wide range. Usually we say around halfway in range and top of range is 150

B12 could be a bit higher

Vitamin D test?

Curtis90
Curtis90
in reply to SlowDragon

can’t find my Vit D at hand but again this was within range

Hi Curtis would u mind sharing your symptoms I too diagnosed Hashi yet they act like my symptoms have nothing to do w autoimmune or thyroid ! Sorry and ty

Curtis90
Curtis90
in reply to Cg430

Sure, my symptoms are the following, I am male by the way:

Hair loss and thinning on whole body

Eyes that sting

Floaty/dizzy sensations

Palpitations/constant hard heartbeat

Constipation

Struggle to gain weight, loss of muscle throughout my whole body

Hissing in my ears

I also heal slower than before (bruises, cuts, infections etc)

Body aches intermittently for no apparent reason

Match up with anything you’re experiencing?

Cg430
Cg430
in reply to Curtis90

Yes ..... tons of eye issues nerve pain twitching in eyes and body . Buzzing sensation mostly in legs floaty and foggy yes off feeling even w balance at times I lost weight btw in the beginning 4 years ago. Down 39 lbs which I gained back . Yes on body aches but sometimes shooting pains again feels like nerve pain and muscle twitching . Also anxiety I’m sure from the symptoms . Yes on palpitations actually first thing was rapid heart rate . I do not hv constipation actually the opposite at times yes on the bruising issue . Sleeping is terrible . Always interrupted every few hours a nite . Was having panic attacks that r now just anxiety issues . Loss of hair yes .

Sorry I cut myself off . I finally found an Endo to start treating me w Levo then synthroid non generic form of Levo . Still at 25 mg tho after 16 months . My symptoms make me feel hyper like can’t sit still at times . I explain to them I feel tired yet wired ? Just redid bloodwork waiting to see new results . I did keep pushing for the medication even after 4 drs and a few Endos I actually felt and still feel on days that my thyroid is being attacked which effects everything in our bodies . I get the nerve twitching and pain in my head also . Wha was the reason for your mri ! Thx

Have you been diagnosed with Exocrine Pancreatic Insufficiency (EPI) ?

Have you been prescribed PERT (Pancreatic Enzyme Replacement Therapy)?

Google these ?

Also Google:

Faecal Elastase - NHS South Tees Hospital. (According to their website elastase result of 100 - 200 ug E1/g means moderate to mild exocrine pancreatic insufficiency ).

ALSO

(Just seen your symptoms list)

re: 'palpitations / CONSTANT HARD HEARTBEAT &

FLOATY / DIZZY sensations

You could go to A&E with these symptoms. Or call Out-of-hours or 111.

Have you had any ECGs? Have you seen a Medical Consultant or Cardiologist?

Finally - is anyone going to do a third elastase test to see if it's improved at all.

Do you have a problem digesting fats?

Hi again

What dates where the faecal elastase results of 92 and 120 ?

Hi Mary

92 was in April and 120 in late October

Before I was diagnosed with Hashimotos, I gained 13kg, when I was diagnosed and given Levothyroxine that weight went, plus another 3kgs! However, for the best result in stabilising my weight, I switched to taking my Levothyroxine at night instead of morning and the weight fell off! I found that Hashimoto Disease sufferers, myself included, often suffer with low stomach acid... all symptoms are very much like GERD/Acid Reflux & IBS. I was sure I had problems with my pancreas (my gall bladder was removed in 2013). I was treated by my GP for Acid Reflux and prescribed Lansoprazole 30mg daily. This worked well to begin with but after 2-3 weeks the symptoms started reappearing. I then did a lot of research and discovered I could be suffering LOW stomach acid. I felt so ill and frightened to eat in case I got crippling digestive problems. The pain always seemed to start from the pancreas area. I then decided to try natural products to raise my stomach acid. I got Betaine HCL from my local health food shop, and Raw Organic Apple cider Vinegar. I take a teaspoon of ACV in a full glass of water every morning with my Lansoprazole. I then have a teaspoon of ACV in a full glass of water before my lunch then I take a Betaine tablet after. In the evening, I take another Betaine tablet after my evening meal. Then when I go to bed I have another teaspoon of ACV in a glass of water with my Levothyroxine. This regime has worked well for me and has eliminated all the crippling digestive problems caused by Hashimotos. I hope this helps you discover the best way forward.

Curtis90
Curtis90
in reply to MissyMoomy

Thank you for your advice, I’ll try the ACV and Betaine

Little update, today I was diagnosed with mild exocrine pancreatic insuffiency and I’ll be prescribed pancreatic enzyme replacement therapy.

Not the source of my overall issue but hopefully it helps with some of my symptoms and makes it a little easier for me to gain weight.

An interesting study I found online shows there is a link between this and hypothyroidism and I will be taking this to my endocrinologist in the hope I can be prescribed a trial of levothyroxine.

A snippet of the studies conclusion is below..

“Exocrine pancreatic function was studied in 15 patients with hypothyroidism and 15 healthy subjects by means of the amino acid consumption test, a new tubeless test based on the measurement of plasma amino acid uptake by the pancreas during pancreatic enzyme synthesis stimulation. Nine of the 15 patients were also studied after they had become euthyroid following thyroxine treatment. Pancreatic function was significantly reduced in patients with hypothyroidism compared with healthy subjects. Treatment with thyroxine restored pancreatic function to normal.”

On Xmas Eve I went to see the endocronologist again. My TSH readings were now 4.2 (0.2-4) and my FT4 was 13 (11-22.6).

The endo was reluctant to prescribe me levothyroxine but after I insisted he agreed to give me a trial - reiterating that he feels I would have no benefit from the treatment.

That being said today I started a course of 25mg that I will take for the next 2 weeks, followed by 2 weeks of 50mg. To finish off I’ll be on 75mg for 1 month before seeing my endocronologist again.

I will keep everyone updated, I know it takes a lot of time to see results but hopefully I get something from this.

Merry Xmas

Happy New Years. I’m now a week into using levothyroxine (25mg).

Unfortunately no changes as of yet which is disheartening even though I know it can take much longer

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