Hashi Question?

[Bonzo81050]

Hi I have just joined the group and was wondering if anyone could help. Was diagnosed last summer with Hasimoto after having a sore throat for a month, turns out all the other issues I had been going to doctor about over last few years weren't anything to do with age, possible arthritis, muscle imbalance, acid reflux or hormones just thyroid slowly being destroyed. I have just gone gluten free which has helped with the acid reflux, bloating and constipation, but am still getting the sore throat, had this nearly a year now. Just had an episode where I couldn't swallow, tonsils sore on one side and tongue ...... Is this normal? Waiting for referral to ENT . Thank you x

[SlowDragon Administrator]

Can you add your most recent blood test results for TSH, FT3 and FT4 plus vitamin D, folate, ferritin and B12

Many patients, especially with Hashimoto's are under medicated and/or low vitamins

How much Levothyroxine are you currently taking

[Bonzo81050 in reply to SlowDragon]

I am taking 75 of thyroxine, last bloods were done in Feb when I had had an ear ache since Christmas. The only thing I have had tested are thyroid levels which were both 1.5 which apparently is better than the 33 they were, and antibody levels were 94, they were 146 when it started so I assume it's all going in the right direction.

[greygoose in reply to Bonzo81050]

That's not your thyroid levels, despite what doctors think/call it. It's your TSH, which is a pituitary hormone. Thyroid hormones are FT4 and FT3, and your doctor should be tested at least the FT4. The TSH doesn't tell you very much at all, once you are on thyroid hormone replacement (levo).

That said, your TSH is still a tad too high, it should be one or under. So, you do need another increase in dose.

Your antibody levels coming down doesn't mean anything, because they fluctuate all the time. They are highest just after an immune system attack. Even if they go down into range, it doesn't mean that your Hashi's has gone or been cured. Hashi's is for life, I'm afraid.

[Skylane2 in reply to greygoose]

Thank you for that excellent report I have just finished having the flu and my tsh was 34.50. I was shocked until you explained how it works

[greygoose in reply to Skylane2]

Well, I didn't explain very much. Even when on thyroid hormone replacement, you don't want your TSH going up that high. It does mean you're under medicated. But, TSH will rise during illness, because your conversion rate will drop, and therefore FT3 levels, causing the TSH to rise. But not that much. You will probably need several more increases in dose.

[Lisflo in reply to greygoose]

Could you help me please.

T3 uptake 42.10

T4 ( thyroxin total 8.36

TSH 0.71

Doctor said good numbers. But been feeling horrible, joint pains and nodule and cyst on thyroid. One side is growing also.

[greygoose in reply to Lisflo]

I'm afraid I can't. T3 uptake and Total T4 are not tests that give any useful information. And, a TSH by itself doesn't tell us much, either. What you need are:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

That will give you a clearer picture of what's going on with your thyroid.

Sounds as if you've had a scan to know that you have nodules and cysts. Was there no other information from that scan?

Your doctor may have said your numbers are good, but that really goes to show he has no idea what he's looking at. Is he a GP or an endo? You would really need to see an endo and get the right testing done. I'm afraid there's really not enough information there for any of us to be able to help you.

If you can get the right testing done, it would be a good idea to start your own thread, giving as much information as you can:

* blood test results and ranges

* any diagnosis you might have had

* any relavent dates and time lines

* any medication or supplements you're taking and how much

* list of symptoms - joint pain could be down to low vit D

Then, a greater number of people will see your post and try to help. This thread is two years old, and not many people are going to see it. But, even if they did, they cannot help without all the details.

[Lisflo in reply to greygoose]

Will definitely get those test done thanks so much!

[Lisflo in reply to greygoose]

My calcium levels are 10.0

[greygoose in reply to Lisflo]

We do need the ranges. Results cannot be interpreted without ranges, which vary from lab to lab.

Do you have a parathyroid problem?

[Lisflo in reply to greygoose]

Don't know yet basically doing my research and trying to figure of whats wrong with me. Have swelling abd pain in fingers every morning. Forget everything horrible memory, neck pain. Don't feel like myself at all. Doctors seem no to care or know what's going on these days. Dont know much about my families health history. My mom had bad heart and Sarcoidosis . And im sure other illnesses, but never wanted to worry me so she kept to herself. But she also had major depression issues attempted suicide many times, and was put away awhile for it. Will keep you posted getting ulrasound results tomorrow due to my nodule and thyroid growing.

[greygoose in reply to Lisflo]

OK, well, put all the details in a new post, and I'm sure you'll get a lot of help from the knowledgeable people on this forum.

[Lisflo in reply to greygoose]

I certainly will thanks!

[greygoose in reply to Lisflo]

You're welcome.

[Lisflo in reply to greygoose]

Hey hope all is well. So good thing is my nodules all look to be benign from the ultrasound. But I have an extra nodule on my thyroid so I have two nodules and a cyst. So will be referred to a new endocrinologist and I guess I will continue to have tests, will ask for antibodies test and more extensive thyroid panel once I go. Been having compression symptoms and my neck just very uncomfortable. Hoarse voice that comes and goes. Just really frustrating. Will keep you posted thanks for listening!

[greygoose in reply to Lisflo]

You're welcome. But, it would be a good idea to post a new thread when you have more news, rather than using one that is two years old. Then, more people will see it and be able to reply.

[Lisflo in reply to greygoose]

Ok i will do that thanks!!

[Lisflo in reply to greygoose]

So my all labs are fine tpo is 16 is that normal to you?

[greygoose in reply to Lisflo]

I cannot possibly reply without seeing all the results, with ranges. Please write a new question so that everybody can see it.

[SlowDragon Administrator in reply to Bonzo81050]

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test FT3 and FT4, plus vitamins

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

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)

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

Ideally ask GP 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...

[Bonzo81050 in reply to Bonzo81050]

Thank you will make a list and ask doctor, if not will look at going private. So this latest sore throat episode I take it is an attack which could happen at any time, I wish the doctors would just explain what will happen

[greygoose in reply to Bonzo81050]

They can't explain. They don't know. They know nothing about Hashi's, and very little about thyroid in general. You need to keep your TSH suppressed when you have Hashi's, to even out the attacks.

[SlowDragon Administrator in reply to Bonzo81050]

Doctors don't understand link between gut and thyroid and low vitamins

Good you have gone strictly gluten free

You need to get vitamins tested, by GP or privately. Likely to need supplementing if low

[JasmineJade]

You should try sticking to an anti inflammatory diet. I just got blood work done to see what the doc had to say about my thyroid...i believe its Hypo. But in the mean time ive done my on research and found out what foods to avoid and what foods to eat....i have cute out all grains and all cruciferous veggies over this last 2 weeks and it has been amazing for me...hope this helps.

[shaws Administrator]

Welcome to our forum and you have an Autoimmune Thyroid Disease - also called Hashimoto's due to thyroid antibodies being in your blood. These antibodies wax and wane and attack your gland until you are hypothyroid. Hashi's and hypothyroidism are treated the same. Hashi's can be helped by going gluten-free which helps reduce the attack on the gland and I note you have begun to do gluten-free.

I shall give you a list of clinical symptoms and usually we do have low acid which is helped by taking a Betaine/Pepsin tablet with meals which help provide the acid we require to dissolve food. I cannot answer about your swollen throat but others who have experience of that will respond.

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

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

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

Blood tests have always to be at the very earliest and allow a gap of 24 hours between last dose of levo and the test and take afterwards. Also don't eat before the blood test but afterwards as food reduces the TSH. You can drink water.

Always get a print-out of your results, with the ranges and you can post if you have a query.

Any member who've had symptoms re tongue etc will respond when they read your post.

[Clarrisa]

I just wondered if there was any correlation with a side you may be favoring sleeping on at night & the side of your throat that is bothering you(?).

[Bonzo81050 in reply to Clarrisa]

I had never thought of that but I do sleep on my side, will watch out for that thank you

[shelbydaws10]

Google the crap out of Autoimmune illness...ask for natural cures. Then you will be on the road to recovery.

[Marz in reply to shelbydaws10]

Sorry I am not understanding your reply above - HELP ? Reads strangely

[Rmichelle]

Hi i have hashis too and i to complain of a one sided sore throat-it comes and goes with a flare up alongside feeling hyper again. Read as much as you can and learn from this wonderful forum -its magic🌟

[Maza84]

Have you got any vaccine shot before all that symptoms?Before the diagnose?

[Rootytootie]

you have an auto immune disease it must be more than gluten

You have to go on anutoimune diet then reintroduce foods

[Rootytootie in reply to Rootytootie]

get a good prebiotic supplement & lots of colourful 🌈 veggies to make your belly strong 💪🏻 🤞🏼