New diagnosis Hashimotos help with next steps! - Thyroid UK

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New diagnosis Hashimotos help with next steps!

Ladyrandom profile image
25 Replies

Hi im 28 and just been diagnosed with hashimotos - I do hope someone might be able to help me. Since August I've suffered with globus sensation after a period of high stress and anxiety. Eventually went to the doctor in September and stated that as it felt like a tightening and lump around my thyroid area I wanted a blood test to rule a thyroid problem out. Had the blood test and it comes back underactive thyroid however globus sensation was becoming more uncomfortable and seemed to be acid reflux. So along with 50mcg dose of thyroxine i was prescribed high dose omeprazole. All symptoms got much worse along with much obsessing on my part thanks to my health anxiety flaring up. As the omeprazole didn't work I came off it and the globus has slowly started to get better over the past week though it is still there. Part of me feels it's gastric could this be related to underactive thyroid!? The GP has thought it's anxiety and I do have my first CBT appointment Friday...but also I have a referral to gastroenterology in a couple of weeks but I would so rather avoid an endoscopy if I can!!

I had an ultrasound of my thyroid to check and it appeared all normal thank goodness.

6 weeks on the thyroxine I had repeat bloods plus antibodies and GP states I'm ok on that dose now as I'm in the normal range, however clearly have hashimotos due to high antibodies. I've only just got my print out of bloods and I'm disappointed in the TSH level and that in neither test has T3 been measured which I see mentioned on here.

I just don't know where to go from here what steps to take next. I'm still pretty tired in the afternoons, low mood, brain fog. Just given up gluten a few days ago to see if it helps the antibodies/brain fog.

I will post my blood results:

October bloods:

TSH - 18.39 (0.27-4.20)

Serum free T4 level - 11 (12-22)

Serum C reactive protein level - 2 (<5)

Had full blood count all normal

November blood test

TPO Antibodies - >600 (<34)

Serum TSH level - 3.13 (0.27 - 4.20)

Not had vitamin levels checked though my iron levels are fine.

Any help would be greatly appreciated!

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Ladyrandom
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25 Replies
Nanaedake profile image
Nanaedake

You have room to increase thyroid meds as a lot of people feel better when their TSH is nearer to 1. Stomach problems are common with thyroid conditions. Best to get vitamin levels tested which might indicate whether you have any coexisting problem that needs further investigation. B12, folate, ferritin and Vit D. You say your iron levels are good but what about iron stores (ferritin?).

Ladyrandom profile image
Ladyrandom in reply toNanaedake

Now that you mention there is no ferritin on my blood count so I will have to ask for that to be checked too. Just haemoglobin estimation which I'm not sure what that actually means!

Your TSH level this month is still too high. Should be under 2.

You should have been given an increase of 25mcg Levothyroxine. So now be on 75mcg.

You could ask GP for a referal to an Endocrinologist as you still have symptoms .

Tell the Gastroenterologist that you do not want the endoscope. You do not have to agree to a test you don't want. Ask for a Barium Swallow instead. I can't tolerate the OGDscope due to narrowing in throat. I refused. Strangely, the first Gastro Consultant I saw said I couldn't have the endoscope due to throat condition (posterior prominence on the cricopharyngeus ). But at a later date another doctor tried one but had to stop it straightaway .

When on Omezprazole were you taking it at least 2 (preferably more) hours away from Levothyroxine?

You could ask gor a referal to ENT for a nasendoscope - it's a lot thinner. I've had a few. There's also a Laryngoscope which is over in a few seconds - I've had 2 of them.

I take Zoton Fastab orodispersible lansoprazole. My Levothyroxine between 3 and 4am and my Lansoprazole at least 4 hours later.

Ladyrandom profile image
Ladyrandom in reply toMary-intussuception

Will definitely discuss all options with the gastroenterologist as I'm so scared! Luckily I have no problems with swallow just this horrid feeling of tightness which varies in intensity throughout the day.

Funny you mention omeprazole and timings as I specifically asked the pharmacist and she said to take omeprazole and thyroxine together in the morning and I was on that for 5 weeks out of the 6 weeks before my blood test. I am thankfully off it now do you think this was affecting the uptake of thyroxine? I also asked my gp if the omeprazole would affect the thyroxine she said no!

Mary-intussuception profile image
Mary-intussuception in reply toLadyrandom

Firstly - I have just added to my first reply.

Yes, some pharmacists seem to have their own opinions of medicines. I've heard it said about being taken together before. The thinking is that the PPIs are enteric coated granules so aren't absorbed till they get to the small intestine.

My Endocrinologist said to take Levothyroxine ' well away from Lansoprazole - take it at night '. But it wasn't working out and I starting taking it in the morning again.

It does appear that your Levothyroxine had good effect because your TSH has come down (thankfully). But if you go back on a PPI (I prefer the Zoton lansopraxole) I would take it at a different time. Levothyroxine needs stomach acid to work.

It's supposed to be taken on its own with water and no other meds nor food nor drink at the same time. Food & drink after an hour. Some meds after an hour or 2 and certain meds and supplements must not be taken for 4 hours.

GPs aren't specialists. I would politely insist on seeing an Endocrinolgist. Hopefully you would then get FreeT3 & FreeT4 tested. I don't understand how the Thyroiditis wasn't seen in your scan though? Some doctors say "normal" when what they really mean is "no malignancy ". You could email or write a letter to the hospital for a copy of your medical records , all scans & test reports, notes etc. Anyone in the UK can get copies now free of charge since new rules 25 May 2018.

If this were me , I would be wanting to see an Endocrinologist, ENT Specialist as well as Gastroenterologist.

I would also ask GP to test levels of:

Vitamin D; B12; Folate and Ferritin. You may have some deficiencies that require prescribed supplements (especially Vitamin D).

Ladyrandom profile image
Ladyrandom in reply toMary-intussuception

Thanks so much for your replies! The ultrasound was before my antibodies were checked as she didnt do that to start with and as he did the ultrasound he told me that the thyroid appears normal. He said the hormones must be releasing slowly but the thyroid itself looks fine. Should it look different with hashimotos? I will have to request the scan results to double check I haven't been misinformed.

Yes I will get a referral to an endocrinologist.

Mary-intussuception profile image
Mary-intussuception in reply toLadyrandom

I'm not sure about the scan results, as I can only speak of my own experience and my Thyroiditis was revealed in the scan. But no nodules found (in first scan).

My TPO result was 300.

Hope you get everything sorted in the coming months.

How will you approach GP for the 25mcg increase in your Levo?

Could say something like . . ' you understand that the Therapeutic level of TSH in Hypothyroid patients is less than 2 ? There is opinion that it is a maximum of 1 ?

ps

Ask Gastroenterologist to test for Coeliac. Eat lots of bread in the days before and of the test.

Caroline888 profile image
Caroline888 in reply toMary-intussuception

Hi Mary. I was so pleased to read your reply to Ladyrandom suggesting that she refuse the endoscopy and ask for a barium swallow instead. Does that achieve the same purpose?

As with Ladyrandom my GP mentioned the possibility of an endoscopy which I definitely didn't want. It's good to know that if the need ever arose, a barium swallow might be a possible alternative.

Thank you. Hope you are doing well.

Best wishes

Caroline

SlowDragon profile image
SlowDragonAdministrator in reply toCaroline888

I was dreading an endoscopy as I can't swallow even normal size pills since thyroid problems started

But it was absolutely fine.

My gastroenterologist recommended the mild sedation. His advice was, everyone who has endoscopy with the mild sedation would be happy to repeat the process in future, if need be.

I would definitely agree with his advice. I wasn't even aware of anything at all

Caroline888 profile image
Caroline888 in reply toSlowDragon

Thank you so much for sharing your experience of an endoscopy. My sister has had one and said it wasn’t as bad as she expected but the idea is really scary! I just hope I never need one.

Glad you found it ok.

Best wishes

Caroline

Mary-intussuception profile image
Mary-intussuception in reply toCaroline888

My Barium Swallow showed several things. But with the scope the Specialist can actually see inside and further. For example she said she really wanted to see my pyloris but that didn't happen, interestingly they reported 'normal Cricopharyngeus ' which is about as far as they got. So the 'prominence ' only showed on the xray with the swallowing action when taking the Barium meal.

If you have no narrowing in the throat and top of oesophagus why not try the OGDscope? You can have the sedation and they look after the patients very well from my observations. Sometimes the fear is worse that the actual experience

It really all depends on the individual patient's symptoms and Specialist opinion following preliminary investigations, taking medical history etc. Certainly no 'one size fits all'! We are all individuals with different needs.

It just so happens that I was told about my hiatus hernia by ENT doc after he did Nasendoscope. He said "I think you have a small hernia - you have acid damage on the Arytenoids ".

This was successfully treated with 60mg Zoton Fastab (twice maximum dose ). But when stopped , & put on generic 15mg, symptoms returned and I was back in ENT. They ordered the Barium Swallow which revealed the prominence on the Cricopharyngeus but thankfully not yet the pouch (Zenkers Diverticulum). Oh, and a small, sliding hiatus hernia so first ENT doc got that right!

I got Zoton back but not full dose till more ill with Gallbladder & stomach problems. But also had deranged LFTs - most probably because not yet diagnosed with Hashimoto's & Hypothyroidism. LFTs came ok with time - before on Levothyroxine if I remember correctly.

Caroline888 profile image
Caroline888

I had a tightness over my thyroid and a slight sore throat for six months prior to diagnosis. I kept putting the throat discomfort down to various viruses I had had over the six months but strangely I was able to swallow without any discomfort. I just had a tight, sore feeling at the front of my neck. My doctor tried to give me tablets for acid reflux which I declined as I didn't feel that was the problem. I was then diagnosed with hypothyroidism and within a couple of months the discomfort was gone. I do suffer from anxiety and I think that makes it worse, but now you have been diagnosed and presumably treatment with Levothyroxine has begun, you will probably begin to feel less stressed about your health and the globus sensation should ease. Plenty of helpful information and guidance on this site - the more you find out about your condition, the more you will feel in control. Feel free to post any worries and concerns - there are lots of knowledgeable members who are always ready and willing to help. This site is marvellous. I don't know where I would have been without it.

Wishing you all the best

Caroline

Ladyrandom profile image
Ladyrandom in reply toCaroline888

Thanks so much for your reply I am very grateful! It has been a worrying time I think it's more the not knowing more than anything what's wrong and the gp doesn't give you much information. Questions are shrugged off a bit. I will try to educate myself!

SlowDragon profile image
SlowDragonAdministrator

LOW stomach acid is more common when hypothyroid, especially with Hashimoto's. Omeprazole is to treat high stomach acid. It's extremely common misdiagnosis by GP's

You can find many posts on here about low stomach acid

thyroidpharmacist.com/artic...

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

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

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

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, 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

Ideally ask GP or especially Gastroenterologist for coeliac blood test first

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

November test, just testing TSH is completely inadequate

TSH should be around one and FT4 towards top of range and FT3 at least half way in range

See GP and ask for vitamin tests, coeliac blood test and 25mcg dose increase in Levothyroxine

New NHS England Liothyronine guidelines November 2018

Pages 8 & 12 clearly state that TSH should be under 1,5 on Levothyroxine

sps.nhs.uk/wp-content/uploa...

Mary-intussuception profile image
Mary-intussuception in reply toSlowDragon

Hi

I'm really not sure where the terms 'high ' and 'low' stomach acid come from.

PPIs are given to reduce (not eliminate) the production of stomach acid in patients with hiatus hernias which allow the acid up through the weakness in the hiatus to the Oesophagus and sometimes the throat, where it should not be and cannot be tolerated.

Unresolved rising stomach acid can cause cancer as well as many benign, yet troublesome, conditions.

A poster on here read about this opinion against Omezprazole and Lansoprazole and stopped taking their prescribed Lansoprazole.

This person now has Barretts Oesophagus which is a pre-cancerous condition.

They will have to have regular endoscopes to monitor this, as well as maximum dose Lansoprazole in an attempt to prevent cancer, and to treat the other findings, a number of treatable conditions caused by acid damage, revealed in OGDscope exam.

When this person tried to explain they'd stopped taking Lansoprazole - due to being Hypothyroid and therefore having 'low' stomach acid and was shocked to learn they now had 'high' acid - they received bewildered looks from both GP and Gastroenterologist.

I agree that PPIs should not be given without investigations such as Barium Swallow Xrays which would reveal Hiatus Hernia and Reflux and some conditions rising acid can cause or Nasendoscope and/or Laryngoscope in ENT appoinment through which a skilled Specialist can actually see changes caused by the rising stomach acid.

Sadly, with Laryngopharyngeal Reflux people don't necessarily get symptoms of just get a few , occassionally.

That's why it's known as Silent Reflux. Acid pools in the throat at night and damage is done while we sleep.

My thoughts on this:

If prescribed a Proton Pump Inhibitor by a Gastroenterologist following an investigation and finding of an hiatus hernia (no matter how small )

OR

If prescribed a PPI (hopefully Zoton Fastab Lansoprazole ) by an ENT Specialist following nasendoscope or Laryngoscope

Then do take it.

If prescribed by a GP with no investigations then query this. Ask for a Barium Swallow investigation - at least. And referal to Gastroenterologist.

Also have nutrients levels tested , whether Hypothyroid or not. Supplement deficiencies. Eat nutritious food. Drink plenty of water. Keep upper body upright for as long as possible after eating . Don't eat late at night. Use several pillows.

Take Gaviscon Advance Peppermint flavour after a main meal if possible and at night or just at night.

Ladyrandom profile image
Ladyrandom in reply toSlowDragon

Thanks for all the links and information, I will go through them and hopefully be armed to face my doctor!

JAmanda profile image
JAmanda

I’ve had a globus sensation for years. Each night I take two levo tablets and as far as I am concerned they sit in my neck til they melt. I cannot get them to go down. It’s not anxiety - is it worth giving it a go asking docs to investigate? I can’t face being offered Prozac or beta blockers or any other nonsense again.

Ladyrandom profile image
Ladyrandom in reply toJAmanda

I had the globus sensation before I took the thyroxine however I must say it is improving now after 4 months. It's a very strange thing and I have consulted a speech and language therapist who knows a lot about this, she feels it's triggered by something like acid reflux, then the muscles become hyper vigilant in protecting the airway from perceived threat. In her opinion it's a case of learning to relax the muscles again through exercises. Though I haven't found any particular exercise has helped me yet they seem to be starting to relax on their own.

Mary-intussuception profile image
Mary-intussuception in reply toLadyrandom

If it is thought to be acid Reflux then definitely ask for a Barium Swallow and then the OGDscope if they still want to do it.

ENT referal may be quicker?

My most recent Laryngoscope revealed Arytenoid Oedema.

Caroline888 profile image
Caroline888 in reply toJAmanda

Have you tried taking a gulp of water before swallowing the tablets. I used to have the same problem of the tablets sticking in my throat. The first gulp of water seems to smooth the way. I have no problem now and swallow three tablets all at once! Hope this helps.

Best wishes

Caroline

Mary-intussuception profile image
Mary-intussuception in reply toJAmanda

Ask for ENT referal?

JAmanda profile image
JAmanda

Interesting replies thanks.

Mary-intussuception profile image
Mary-intussuception in reply toJAmanda

I wonder if the Levothyroxine patches are available yet? I meant to ask my Endocrinologist for them instead of pills. Next appoinment not till March now. I just don't remember things at the right time!

helvella profile image
helvellaAdministrator in reply toMary-intussuception

Which levothyroxine patches?

I do not know of any such product anywhere.

Mary-intussuception profile image
Mary-intussuception in reply tohelvella

I thought I read about them on here but must have been another site.

Read something about them being available in UK in 5 years & that was said 5 years ago. Will come back if I find it.

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