Autoimmune hypo advice

[jester27466]

So I was diagnosed in 2011 and have been on Levo 175mg for 8 years and all good (run 60 miles a week and two marathons a year).. about 3 months ago the wheels came off and all the usual fatigue symptoms re appeared, so I had a blood test and it came back TSH 7.8.. despite taking 175 daily. I am interested as to why this might have happened? currently the dose has been upped to 200 and I can see a long road ahead trying to get sorted. I also have IBS symptoms, which suggest I may not be absorbing the meds, so I switched to taking meds at night and not morning (marginal IBS improvement). Still trying to run, but end up having to sleep after what is a jog. Q: can the meds cause IBS symptoms? thanks for reading, any advice appreciated..

[Danielj1]

I would be very interested in what everyone feeds back as I am a former runner who wants to get back to marathons - I used to run 60 mile weeks and now only really manage 45 minute sessions on the water rower.

For interest, what supplements are you taking ?

[jester27466 in reply to Danielj1]

It is a struggle right now, but up until 3 months ago I was running 3.15 marathons and I am 53 years old. I take a multi vit and a zinc. That's it. I cut out meat around two years ago (still eat fish) and I am not sure that has helped at all. Once I get this blip sorted I am sure I will be back

[SlowDragon Administrator in reply to jester27466]

Likely your B12 will be low if not eating meat. Low ferritin possible too. It's much harder to get enough iron from plant based sources

With Hashimoto's we often struggle to absorb nutrients

Extremely important to regularly retest vitamin D, folate, ferritin and B12

A multivitamin is not recommended. At best a waste of money. But most usually contains stuff we shouldn't take eg iodine or copper

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

Getting vitamin levels tested alongside thyroid is first step

Then supplementing individual vitamins that are low

Getting bloods retested 6-8 weeks after any dose (or brand) change in Levothyroxine

Many people find different brands are not interchangeable

[jester27466 in reply to SlowDragon]

I have a sneaky suspicion that being vegetarian does not help. I may have to re visit that. The whole thing is a pain as running is my world, double whammy not being able to run and feeling rubbish too. I still cannot square why it's flared up after 8 stable years, but I guess I have been lucky. Anyway, blood tests are the first step thx

[SeasideSusie Remembering]

I think the answer lies in your thread title. I take it you have autoimmune thyroid disease, aka Hashimoto's. Do you know much about this?

At the risk of telling you something you already know, Hashi's is where the immune system attacks and gradually destroys the thyroid. There is no pattern, the attacks happen randomly. With these attacks come fluctuations with symptoms and test results and you can swing from hypo to hyper and back again.

It would appear that during the 8 years you have been on 175mcg Levo and feeling well then your Hashi's was pretty stable. It's very likely that you are now going through a hypo phase as you are suffering from fatigue.

What are your current test results for

TSH

FT4

FT3

and because Hashi's can cause gut/absorption problems which can lead to low nutrient levels or deficiencies, what our your results for

Vit D

B12

Folate

Ferritin

If you can post all these results, with their reference ranges, members can comment.

Also, I see from your reply to Danielj1 that you take a multivitamin. These aren't recommended for a few reasons: they tend to contain too small amounts of any ingredients to actually help any low levels; they often contain the cheapest and least absorbable of active ingredients; they often contain things we shouldn't take unless tested for and found to be deficient i.e. calcium, iodine, iron. If it contains iron then that needs to be taken 2 hours away from any other supplements (and medication) as it affects their absorption.

[jester27466 in reply to SeasideSusie]

Thanks for this reply, really useful. I have no idea of the results range and only know the TSH level. I have been back for more tests and hopefully will have those results soon. Then I can post. I clearly need to get up to speed on this subject.. I have basically ignored and carried on until now. And yes, it is autoimmune - where is the crossover to Hashimoto's? does that get diagnosed clinically as my GP has not mentioned it? thanks again..

[greygoose in reply to jester27466]

Autoimmune Thyroiditis and Hashimoto's Thyroiditis are the same thing. For some unknown reason, doctors in the UK prefer to call it Autoimmune Thyroiditis, whereas everywhere else in the world it is known as Hashi's.

[SeasideSusie Remembering in reply to jester27466]

As Greygoose says, the two are the same.

When you have had your new test done, give it a couple of days and then pop back to your surgery and ask the receptionist for a print out of your results. We are legally entitled in the UK to have them, just make sure it's a print out, don't accept verbal or hand written results (mistakes can be made).

Once you've got your results, post them with the reference ranges (they'll be on the print out, usually at the side of the result and possibly in brackets), and we can comment further.

Some general information about Hashi's:

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 can also help reduce the antibodies, as can keeping TSH suppressed.

If you haven't had all the recommended tests done (probably very likely) then you could consider doing what hundreds of us here do and that is a private test with one of our recommended labs. Ask for information if you need it.

[jester27466 in reply to SeasideSusie]

Thanks again, maybe I should pay for a full blood count. The gluten thing is interesting as I struggle with processed bread bases (pizzas and white bread) so avoid them. Sounds like I am a typical case, just wasn't expecting to feel ill again after years of being ok with being on my meds. I will post what results I can get off my GP, which is next week. Any advice where to go to get a full blood test done would be great

[SeasideSusie Remembering in reply to jester27466]

We have a small number of recommended labs

thyroiduk.org/tuk/testing/p...

The most popular are Medichecks and Blue Horizon.

Medichecks have random special offers on a Thursday, thyroid related. Any that aren't on offer you can use code THYROIDUK for a 10% discount.

Blue Horizon currently have 330 codes for use for a 33% discount - BLUE33 - which ends on 30th September or before if they've used up the 330 that are available.

If you want full thyroid/vitamin testing these are the two most popular which can be done by fingerprick or venous blood draw can be arranged at extra cost:

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... (Don't forget code THYROIDUK for a 10% discount on any test not on special offer)

or

Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Serum B12. Medichecks does Active B12.

Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

If you just want TSH, FT4 and FT3 then there's

Medichecks Thyroid Monitoring

Blue Horizon Thyroid Check Plus Three

Have a look through their other tests too.

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 (both Medichecks and Blue Horizon advise to leave Biotin/B Complex off).

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

If choosing the fingerprick version, some people find it easy, some struggle. I've done many fingerprick tests and find filling one microtainer no problem although I do struggle to fill two. My tips are:

* Be well hydrated, drink plenty of water the day before, and before you do the test.

* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.

* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.

* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.

* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.

* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable

I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did

* Prick my finger as usual, make a very slight twist with the lancet whilst blade is still in the finger. I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.

[shaws Administrator]

Re blood tests, there's a special offer from one of the recommended labs. It ends on 30th September.

thyroiduk.org.uk/