How does Hashi's end?

[Scazzoh]

I have not been able fo find an answer to this question. If thyroid antibodies completely destroy the thyroid gland, what happens to them. Do they die? Or move on to something else? If they die, does that mean I can start eating gluten again, because there is no 'molecular mimicry'? Have I still got an auto-immune disease, if I do not have a thyroid gland left? I have been trying to get my GP to get my thyroid scanned, but 'no go'. How do I go about getting it scanned privately? I have probably not got much left, given that I was diagnosed in 2002 and not given hormone replacement till 2010, when the TSH was 47.

[greygoose]

When the thyroid is dead, the immune system no-longer makes the hormones. They don't attack anything else. I've no idea about gluten-free, because that never did anything for me, anyway. So, I gave it up after three months. I guess you'd have to try eating it to see.

[galathea in reply to greygoose]

But what about the other stuff you can get which is also auto immune? I have more than one auto immune disease, though i started with hashimotoes. When my thyroid has gone and i no longer have antibodies, Then i will still have the other problems Wont i? ( wish they would just go away)

20 years after being diagnosed and treated with thyroid hormones, my antibody level was still almost 2000.

Xx

[greygoose in reply to galathea]

Other autoimmune diseases? Well, I imagine you would. But I thought we were just talking about Hashi's. Hashi's antibodies only affect the thyroid, as far as anyone knows. Each autoimmune disease has its own antibodies.

[Clutter]

Scazzoh,

Hashi's should burn or fizzzle out once there is no more thyroid activity. Unlike Graves Hashi's doesn't attack other organs when the thyroid is dead or removed. Since thyroidectomy I have had no Hashi attacks and have undetectable thyroglobulin and thyroglobulin antibodies.

[cc251254 in reply to Clutter]

What other organs does Graves attack Clutter ?

[Clutter in reply to cc251254]

CC251254,

Graves Disease most often attacks the eyes but it could also attack heart, kidneys and liver.

[cc251254 in reply to Clutter]

Oh no. I know a little about the eye issue but haven't read anything about Graves "attacking" heart, kidneys and liver. The issues re liver I thought could be caused through taking Carbimazole. The issues re heart I thought were caused by the palpitations possibly causing damage etc. I haven't read anything re kidneys. My eyesight seems to be getting worse but I don't have the bulging eyes.

[SmallBlueThing in reply to cc251254]

Hashi's with hypothyroidism can also affect the eyes

rnib.org.uk/eye-health-eye-...

[Katepots]

That's interesting, wouldn't it be beneficial for those of us with Hashimotos to have our thyroid removed then??

[Ruby1]

I think if you have one auto immune disease then there is a possibility you will develop other auto immune diseases. The failing I think is in our auto immune system as opposed to these particular anti-bodies.

Personally I would prefer not to undergo unnecessary surgery for a thyroidectomy. More expense for the NHS and every operation is a risk. I'd like to keep the functioning portion I still have

[elaine2447]

Thank you for asking the exact same question as I would have. My antibodies are now over 1300 (0-60) and apparently 1300 is the max laboratory measurement so goodness knows what the correct reading is. They have increased quite dramatically since March of this year. One reading down in a private clinic showed slightly underactive thyroid but local GP readings are slightly different values so the usual thing "within the normal range" - probably the most hated phrase for thyroid and parathyroid sufferers. So I am on no medication just waiting for the thyroid to be completely destroyed! I also have suspected primary hyperparathyroidism.

I have been trying to find the cause of these antibodies to no avail really except I read a fairly interesting article yesterday which mentioned about a leaky gut. I had heard of this but thought it was to do with faecal incontinence but it is not. Apparently the lining of the small intestine in some people cannot absorb certain nutrients and so anything essential does not get into the blood stream. I then looked up leaky gut and the biggest culprit apparently is gluten. It also mentioned dairy etc. Unfortunately I am not great with dairy products but I have severe osteoporosis so feel I cannot cut it out completely. I can't take calcium because of fluctuating high end blood calciuim and PTH. I do suffer with IBS. I am not celiac but I have actually cut out gluten as far as possible. The writer went on to say that she has a lot of faith in L-Glutamine. I have ordered some and see how I go. I hate this waiting game. A group I belong to on Facebook said they think I should be on thyroxin but what do you do when the GP has "it's within the normal range" stuck in her head.

[Dot-69 in reply to elaine2447]

elaine2447 First thought that comes to mind is, change the GP, but maybe easier said than done! They should be jumping up and down with antibodies that high. And I will agree with another post that says an auto immune disease can attack anywhere, my daughter abroad is now in remission with sarcoidosis so could be that auto immune diseases are in the family. Not sure how all that works. Hope you get some help

[elaine2447 in reply to Dot-69]

Hi thanks for reply. As I said in my reply to samaja below, changing GP's is not really an option. I live in a fairly big town but there are only two practises, both overstretched and both as "useful" as each other. So I am stuck at the moment. I have emailed the Endo in London again with the results and hoping he will suggest something. In the meantime, my GP is writing to the bone clinic in Cambridge and also the Endo Clinic there (the latter I am dubious about) and I am waiting for an ultrasound appointment on my shoulder.

One other point I was wondering. I have never had a flu injection but now they are offering them to people with egg allergies. I am one of these people that if someone is going to have a bad reaction, it will be me. I was wondering with all these lovely antibodies I have if it would be unwise to have a flu jab. I am glad to hear your daughter has recovered.

[samaja in reply to elaine2447]

Unfortunately there are plenty of possible root causes of which leaky gut is one though a very common issue for most auto immune sufferers. You might find a lot information on all things Hashimoto in Izabella Wentz's "Hashimoto's Thyroditis; Lifestyle Interventions for Finding and treating Root Cause" or a number of other books on the subject. Eating dairy for osteoporosis might be actually more counterproductive than beneficial, especially if not accompanied by high doses of magnesium and most people with Hashi's do not tolerate dairy well anyway.

Changing GPs is also a common side effect of Hashi's by the way

[elaine2447 in reply to samaja]

Thank you for your reply. I do take magnesium and recently had a magnesium blood test instigated by a private endo in London and that was high end normal. Thank you also for the reference, I will have a look at this. Strangely enough last year for three months I had the most horrendous time up until December with constant racing heart, constant nausea and insomnia. Nobody knew what was wrong. I eventually ended up with a physch team who said it was "anxiety and depression". I am an anxious person but I have lived with that most of my life, I am 69 now, but I wasn't depressed just felt so ill and lost a stone and a half in weight. So I was put on mirtazapine, not a very nice anti depressant and I have to admit the nausea did stop as did the racing heart. However, this did not agree with me but I persevered and then I started tapering it off much to their disgust as I was convinced it was more physical than mental.

By the way, I had been under a private endocrinologist since June of last year who was absolutely hopeless trying to establish primary parathryoidism. Anyway, I went to see an endocrine surgeon in March of this year who felt there was an adenoma on one of the parathryoids (I had had a previous ultrasound in the October showing possible adenoma 8 x 6mm which is tiny but perhaps not so tiny when one considers a parathyroid gland is the size of a grain of rice. Anyway, this surgeon wanted his own "expert" to do an ultrasound which I had done. This doctor said there were unequivocal signs of thyroiditis, possibly Graves, and thought it was the shadow of that that was making the first ultrasound 5 months previously look like an adenoma. He suggested an antibodies blood test. Surgeon ignored this and said lets concentrate on vitamin D and see if it stirs up the PTH and calcium. Eventually I had the blood tests which showed slightly underactive thyroid and antibodies then were about 800. He then referred me to another endocrinologist who I saw in September who also wanted antibodies test done and some others including the magnesium and one which I discovered was for myeloma which really freaked me out. That was okay fortunately but antibodies were up to 1300.

So 18 months later and £6,400 down the toilet, I am still no further forward and instead of just thinking I had a parathyroid problem, it seems I now have a thyroid problem too.

Changing GP's is not an option unfortunately and I am disillusioned with the private sector as well.

[Kitten1978 in reply to elaine2447]

- see a different GP from your practice,

- change your GP practice,

- see a private GP.

[Scazzoh in reply to elaine2447]

Have you had your TSH measured? What is it? You could get privately tested for TSH, Free T3 and Free T4, then self medicate, the dose depending on your levels. The Auto-Immune Protocol is a Paleo type diet, specifically designed to address gut issues for people with AU diseases. It starts with a quite a strict exclusion diet then introduces food stuffs slowly. I have been on it for a month and my IBS symptoms have disappeared.

[elaine2447 in reply to Scazzoh]

Hi Scazzoh

Many thank for your reply. I will have to look into the Paleo type diet. I already cut out gluten mostly for some long while. Ive had IBS for decades since massive doses of antibiotics for brucellosis in 1969. I have been taking probiotics for over two years now. I am in a really anxious state, so many problems, healthwise and on top of that a cat issue so am really stressed which doesn't help. When I was looking at diets for leaky gut which I don't even know if I have, last night, I got totally overwhelmed and thought I might as well give up eating altogether!

I have been down the private route at huge cost and got nowhere but of course Gp's don't do T3 test so one is forced to get that done privately. I am thinking of using Blue Horizon who carry out certain tests at local private hospitals, no gp referral, they are expensive but it does at least cut out the minimum £250 to pay for a consultant on top.

I copied out some of my most recent results plus the July ones at the bottom and I don't know if you can make sense. I don't know the difference between peroxidase and thyroglobulin antibodies. Both of which over in July.

11th October

TSH 2.18 (0.35 – 5.5)

Free T4 13.9 (10.0 – 19.8)

These were repeated due to the missing antibodies results but then they got lost the second time!

14th October

Serum TSH 4.16 (0.35 – 5.5)

Serum Free T4 13.4 (10.0 – 19.8)

Thyroid Peroxidase Antibodies >1300 (0 - 60)

It is very confusing when labs have different values

I am referring to the July Harley Street Lab results:

TSH 4.36 (0.27 – 4.2) which is why Endo surgeon thought I was slightly underactive.

T4 74 (59 – 154)

T3 1.5 (1.3 - 3.1)

Thyroglobulin Antibody 122.2 (0-115)

Thyroid Peroxidase Antibodies 469.5 (0-34)

[LUCYACUDR in reply to elaine2447]

I read that the antibodies are made because various substances such as gluten is seen by the immune system as the thyroid tissue itself being similar so ithe gland gets affected in that way.

[Katepots]

I'm gluten and dairy free and take various vitamins but not selenium, maybe I should give that a go. I tend to eat Brazil nuts daily as high in selenium.

[Scazzoh]

Hi Elaine, Your TSH should be below 1 and your T4 and T3 at the top of the range. Your July Harley Street TSH test shows you are over the 'normal' range. I think you should start a new post with these results and get some advice from people on this forum. I am sure you need some thyroid hormone replacement. Do it soon!

[elaine2447 in reply to Scazzoh]

Thanks for your feedback. I honestly don't know whether I am coming or going, what with parathyroid problem as well. I see there are some fairly reasonable finger prick tests for the thyroid that can be done that the GP surgery won't do. Problem is the "within the normal range" attitude of GP's. It's so frustrating.

[elaine2447]

I just re-read your post and I also would like another neck scan. Have had two with different results so I phoned up Nuffield earlier on to find that a neck ultrasound is £284 but the drawback is you need a referral. However, this referral can be done by a GP so at least it avoids the extra £250 or whatever for being referred to a consultant first and then having the ultrasound done.

[Scazzoh in reply to elaine2447]

£284 doesn't sound bad for a neck ultrasound.