Advice about Hashimotos with all hypothyroid symptoms

[glasscaves]

I’m asking on behalf of my husband who’s 59. He was diagnosed with Hashimoto disease many years ago and has yearly TFTs. He has all the symptoms of hypothyroid even down to a bradycardia of 46bpm, borderline high triglycerides, goitre, sensitivity to cold, outer eyebrows none existent, puffy under eyes, poor sleep and tiredness etc. The GP says his TFT is always ok. He’s on no medication. I’m concerned and would like to see an endocrinologist privately but have no idea how to go about this. My husband is happy to see someone. Please can anyone help? Thank you.

[SeasideSusie Remembering]

glasscaves

He has all the symptoms of hypothyroid even down to a bradycardia of 46bpm, borderline high triglycerides, goitre, sensitivity to cold, outer eyebrows none existent, puffy under eyes, poor sleep and tiredness etc. The GP says his TFT is always ok. He’s on no medication.

First thing to do is obtain a printed copy of his test results (unless you have online access to these). Here in the UK we are legally entitled to our results, so if online access isn't available at your surgery then your husband should ask the receptionist (not the doctor) for a print out. You don't need to give a reason and there is no charge.

Once you have these, post them on the forum - result plus reference range - in the following format, eg (made up numbers):

TSH: 2.5 (0.2-4.2)

FT4: 15 (12-22)

FT3: 4.5 (3.1-6.8)

He may not have had all these tests done, just post what he has and we will go forward from there.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary. If these tests haven't been done, he should ask his GP to do them.

If he can't get all the tests done, we have recommended private labs that do a full thyroid/vitamin panel which covers everything and is well worth doing. Please ask if you would like details.

Don't consider a private endocrinologist at the moment, it's very likely that experienced members here will be able to point you in the right direction without going to that expense. There's no saying he'll do any better with a private endocrinologist anyway, they're all NHS trained and often work within the NHS as well as seeing private patients, so their recommendations will very likely be the same.

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.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

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.

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

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

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

[glasscaves in reply to SeasideSusie]

Thank you for this. He did have low vitamin D levels even though he’s a postman so he’s on supplements of D3. We’re going to try the gluten free and see if that helps too. He had a hospital admission a couple of weeks ago due to atrial fibrillation which lasted 8hrs. His resting pulse is 46 and after a coffee he does feel less tired when his pulse raises to the low 50s. He was diagnosed with Hashimoto about 13 years ago by an endocrinologist as he showed antibodies. His GP rang him this morning about the hospital visit and the atrial fib. My husband told her about his resting pulse being 46 and how he’s feeling (he’s felt like this for years). She said in 2015 when he had an ecg his pulse was 40. She said she’s not concerned about the bradycardia but is arranging for him to go for an echocardiogram. They never mention the Hashimoto being a possible cause of his symptoms. Will get the blood results once he’s tried gluten free for a few months. I’ve suffered severe ME for 24 years and am now starting to improve with restricted diet, strict pacing, levothyroxine 25mcg, hrt, low dose amitriptyline for pain and bladder problems. I was a nurse prior to being ill and think that clinically my husband is typical hypothyroid. The gp only put me on levothyroxine when my bloods showed I needed it, even though I get orthostatic tachycardia, am slim with no goitre. It’s strange how they don’t consider clinical symptoms only blood results.

[SeasideSusie Remembering in reply to glasscaves]

glasscaves

Have you got his results print out from the GP?

If he has been diagnosed with Hashimoto's then if his TSH level is over range he should be prescribed Levo.

Hashi's gradually destroys the thyroid leading to full blown hypothyroidism, I imagine if he's been diagnosed for 13 years there's been a fair bit of damage to his thyroid by now and he is actually hypothyroid.

I wouldn't be waiting a few months to see if gluten free is making a difference. It wont stop the destruction of his thyroid anyway, I'd get the full thyroid/vitamin testing done as soon as possible. They wont have all been done by the GP so he should do the Medichecks Thyroid Check ULTRAVIT or Blue Horizon Thyroid PREMIUM GOLD..

[glasscaves in reply to SeasideSusie]

Hi there, thanks so much for your advice. Obviously Paul will need someone to take his blood for these tests. How do you go about that if it’s not being done through the gp surgery? Thank you. Only just seen your response as I’m not being notified via email for some reason. Paul tried the gluten free but he has acid reflux and the gluten free breads worsened that. If only the gps would be more up on hashimoto. Paul had another irregular heart rate on Sunday and another visit to AnE which is not helping his stress levels. He has to have a couple of sleeps each day. I agree with you. All his symptoms are hypothyroid. I used to be a nurse and I can’t understand why the nhs totally disregard clinical symptoms over incomplete blood results. Paul won’t get his blood results from the gp. He doesn’t want to bother them when they keep saying his thyroid function is ok. I think the way to go is the private testing. Sorry for the ramble. I just feel so helpless when I can see how he is. Oh and if Paul has the private blood tests done who will take notice of them and help him if the results come back saying he needs treatment? Thank you!,

[SeasideSusie Remembering in reply to glasscaves]

glasscaves

Only just seen your response as I’m not being notified via email for some reason.

Check your "Settings".

If on a PC, click on our avatar, top right of page. From the drop down list click on Settings, you will see "Email Notifications", under "From my account" make sure there is a tick in the box next to "When someone responds to something I've written".

Obviously Paul will need someone to take his blood for these tests. How do you go about that if it’s not being done through the gp surgery?

Some can be done by fingerprick, eg basic thyroid tests plus the PREMIUM GOLD from Blue Horizon. The Medichecks full thyroid/vitamin panel is THYROID CHECK ULTRAVIT PLUS FOLATE and that one needs a venous blood draw. You can arrange venous blood draw when you order you tests but it does cost more, it can be done at one of their partner clinics/hospitals or you can have home phlebotomy.

As you used to be a nurse if you were willing you could do the blood draw but you'd have to make sure you send for the venous blood draw kit and not the fingerprick kit.

Information about private testing labs here:

thyroiduk.org/getting-a-dia...

Just click on the appropriate lab.

Blue Horizon are currently showing a 30% discount with code TUK30 for all PREMIUM tests. Medichecks gives 10% discount with code THYROIDUK.

Paul won’t get his blood results from the gp. He doesn’t want to bother them when they keep saying his thyroid function is ok.

Sorry, but I think that's rather a silly attitude. Surely he wants to know what they consider is normal, he could be at the very bottom of the range for FT4 and very top of the range for TSH, or even over range and they will still say it's normal. We are legally entitled to our test results without question or charge, all he has to do is ask the receptionist for a print out and say he'll collect it in a day or two or will they email it. The more you read posts on the forum the more you will realise that doctors are hopeless at diagnosing and treating thyroid conditions and we have to become proactive to try and get well.

If you are in England your surgery may well have online access to test results so he could register for that.

Oh and if Paul has the private blood tests done who will take notice of them and help him if the results come back saying he needs treatment?

Some doctors will accept them, some wont, all you can do is present them. If the GP wont accept them then there is the opportunity for them to do the same tests and take it from there.

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

If he wants to do a fingerprick test I have some tips about doing those, so please ask if you would like them.

[Lalatoot]

Glasscaves Normal results cover a wide range. Everybody has to find where in that normal range they feel well. For example the thyroid hormone circulating in the blood known as free T4 (FT4) has a normal range for my lab of 10 - 25. so if my result from thyroid blood test came back as 10 the GP would say 'normal: if my result came back at 25, the GP would say normal. Recently when my FT4 dropped to 10 I lost my voice and had many other symptoms.

Everybody needs to initially try to find where they feel best in the normal range and what dose of levothyroxine is right for them. Thereafter if things are still not right, you begin to look deeper into thyroid hormones but initially you go for the simple solution of blood results and levothyroxine dose.

Your husband is legally entitled to copies of his blood results.

[glasscaves in reply to Lalatoot]

Thank you will look into all you have mentioned

[SlowDragon Administrator]

It’s highly likely that GP has only tested TSH which is completely inadequate

How much levothyroxine is he currently taking

Does he always get same brand of levothyroxine

For full Thyroid evaluation your husband needs 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, with Hashimoto’s

Does he take any vitamin supplements at moment?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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 as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

[glasscaves in reply to SlowDragon]

Thank you. Will look into this