a question for fellow hashi sufferers

[Knackeredandcross]

please can anyone help me with this?

I have been tested for coeliac and it was negative. My nutritionist had initially recommended a gluten and lactose free diet as I had a food sensitivity test which showed wheat and lactalbumin were an issue.

I’ve followed that diet for 4 months and just had my antibodies retested and they are exactly the same, no improvement. I would therefore say the gluten and lactalbumin weren’t causing much of a problem? It may be worth noting that my ferritin (which was previously over range has now reduced back into range - I’ve been told this could be a reduction in inflammation. Could this be due to the diet?)

ive read reports that any hashi sufferer should still cut out gluten as the immune system recognises it as thyroid tissue and it can trigger an attack. Is this true / necessary? I don’t know whether to focus on the fact that my antibodies haven’t changed and reintroduce gluten/lactalbumin or ficus in the fact that my inflammation appears to have reduced and continue. I keep getting differing opinions. Any advice gratefully received. Thank you

[SlowDragon Administrator]

Have your Ft4 or Ft3 levels improved since changing your diet

Is your levothyroxine lactose free

Do you feel any better/different on gluten free diet or dairy free diet

If you decide to reintroduce

Only add one food group at a time

[Knackeredandcross in reply to SlowDragon]

my ft4 and ft3 have improved but I started Levo halfway through the diet changes so I was attributing the improvement to that. I didn’t feel any better energy wise until I started the Levo although I previously had quite bad bouts of costochondritis which has pretty much disappeared so I’m thinking that is reflected in the reduced ferritin/inflammation result and could possibly be due to the diet. My Levo isn’t lactose free. I requested it but my doctor wouldn’t agree. Said there is no clinical evidence for food sensitivities causing issues and if I want to specify lactose free then I must go private. I get a different brand with every prescription 🤷🏼‍♀️ I am going to see a private endocrinologist in the new year as I believe I would benefit from a low dose of t3. I’ve also been told that a low dose of LDN can help reduce antibodies so that’s my next research project!

[Hidden]

yes high ferritin is usually inflammation, which can be very well controlled through diet. It sounds like you’ve reduced your inflammation via the new diet, but how do you feel in yourself?

[Knackeredandcross in reply to Hidden]

I definitely feel better since I started Levo but prior to that I can’t honestly say I felt any different just on the diet changes, just a lot poorer for paying fir gluten free ingredients! My previous costochondritis does appear to have gone though so that in itself would be worth it if it is indeed due to the diet.

[Hidden in reply to Knackeredandcross]

Good for you Without seeing your thyroid labs on the levo it's hard to say whether you're likely improved due to optimal levels of thyroid hormone, or due to the diet but I guess like most things - it'll be a combination of the 2.

[Knackeredandcross in reply to Hidden]

my tsh went from 4.89 to 2.74 on the Levo but they didn’t test anything else as I was ‘in range’. I will be having a private test in January, prior to ending appointment, to get full panel and vitamins as docs won’t test anything

[SlowDragon Administrator in reply to Knackeredandcross]

Was this test done after at least 6-8 weeks on 75mcg dose levothyroxine

Approx how much do you weigh in kilo

was test done early morning and last dose levothyroxine 24 hours before test

With TSH over 2 you should have next dose increase in levothyroxine

Suggest you get TSH, Ft4 and Ft3 tested now via Monitor My Health

It’s several weeks before your endocrinologist appointment

[Knackeredandcross in reply to SlowDragon]

thank you, it was a fasting test before 9 and before levo. This test was after I was on 50mcg for 8 weeks. The doctor then finally agreed to put me upto 75mcg based on these results but wasn’t happy about it. My dose for my weight should be 125 but I spoke to thyroid U.K. and they said gps will often just increase at 25 per time 🤷🏼‍♀️ I don’t honestly think she’ll increase again as she only wants my tsh to 2.5 and doesn’t test anything else hence my booking with an endocrinologist. I started the 75 on 12th nov so I will retest in early jan with the gp and privately for the endo.

[SlowDragon Administrator]

How much levothyroxine are you currently taking

Presumably only a starter dose?

The only two lactose free levothyroxine tablets are

Teva - 25mcg, 50mcg, 75mcg and 100mcg tablets

Or

aristo - currently 100mcg only

Teva is a Marmite brand…..some people find it the best by far. Others don’t like it/can’t tolerate it

NHS pays the same regardless of brand

Approx 98p per 28 tablets

Which brand of levothyroxine are you currently taking

[Knackeredandcross in reply to SlowDragon]

I’m on teva currently but was previously on allianz? and accord I think. I can’t say I’ve noticed any difference between them if I’m honest. Maybe I’m on the lactose free ones by accident. I’m on 75mcg.

[SlowDragon Administrator in reply to Knackeredandcross]

Teva is only brand that makes 75mcg tablets…..so if on a single 75mcg tablet it would always be Teva

How long have you been on 75mcg

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

[Knackeredandcross in reply to SlowDragon]

I have a 50 and a 25 and I’ve never had the same brand concurrently. The pharmacist said they just give me whatever they’ve got in unless gp is brand specific and she won’t specify a brand 🤷🏼‍♀️

[SlowDragon Administrator in reply to Knackeredandcross]

so far you don’t seem to have a noticeable good or bad reaction to different brands?

But if you do …..Government guidelines are clear GP can and should specify a particular brand

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands 

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. 

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription 

healthunlocked.com/thyroidu...

Suspect GP doesn’t actually know how to specify brand

The cost to NHS is identical regardless of brand.

How to write prescription to specify brand of levothyroxine

[greygoose]

Reducing antibodies is not really the name of the game. Antibodies fluctuate and tend to be highest just after an immune system attack on the thyroid, when they have a job to do cleaning up the blood.

Contrary to popular belief, it is not the antibodies attacking the thyroid. So, even if you got rid of them completely - highly unlikely - you would still have Hashi's, and the destruction of your thyroid would continue.

[Knackeredandcross in reply to greygoose]

thank you for replying. So what is attacking the thyroid? And how do we work it what’s triggering the attack please? It’s all so confusing 😞

[helvella in reply to Knackeredandcross]

Macrophage and lymphocytes.

We really don't know much about the underlying causes. Several ideas exist but I don't think any one them is proved beyond doubt and with sufficient clarity for us all to understand.

[Knackeredandcross in reply to helvella]

thanks for your reply. So do you think the diet adjusting, etc doesn’t make any difference?

[helvella in reply to Knackeredandcross]

It might be very necessary to adjust diet in the context of thyroid disorders.

But the impact of dietary changes on autoimmune processes going on in the thyroid isn't fully understood. And which changes to make are not always obvious!

It is pretty difficult to know, for example, whether the autoimmune processes would have been worse had you not made your dietary changes.

So much has been written about these issues and so much it is contradictory. Makes it extraordinarily difficult to come to any conclusions.

As I see it, the antibodies themselves are not much of an issue. But their levels do act as indicators of autoimmune processes. Even then, I don't feel I have enough grasp to know how long antibodies remain elevated.

[greygoose in reply to Knackeredandcross]

Totally agree with everything helvella has said. No-one knows enough about Hashi's to be able to say anything with certainty. Lots of people have theories, but no proof of anything much. Personally, I have never found that any changes to my diet have done the slightest good. And, I've tried gluten-free, dairy-free, sugar-free, etc. So, the only thing that I avoid is soy, because that makes me feel pretty ill. But, I really don't think that has anything to do with the Hashi's.

[Knackeredandcross in reply to greygoose]

thank you 🙏🏽

[greygoose in reply to Knackeredandcross]

You're welcome.