Hashimos Diesease???: Hi everyone, 3 years ago... - Thyroid UK

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Hashimos Diesease???

sophiejfisher profile image
14 Replies

Hi everyone,

3 years ago I started getting some symptoms of hypthroidism. I had blood tests and my thyroid antibodies were high so they said they would keep an eye on it. In September last year I felt bad again so I went back to the doctors my antibodies were still high so they did a scan. They found a nodule I'm December , it had to be removed and was successfiy removed in February this year and was benign. I have still felt unwell and have been so tired and weak, I keep getting pins and needles. My hair comes out and skin is so bad. I also don't feel myself, I feel quite down and depressed. I have had blood tests everything is normal except the thyroid antibodies they are still slightly high. I am now being refered to rumatology. I wish someone could just tell me what's wrong.:(

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sophiejfisher
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14 Replies

Hello Sophiefisher,

Sorry to hear of your worsening health problems.

Hashimotos is a progressive auto immune disease that attacks the thyroid until it becomes atrophied. The thyroid hormones that your body requires in order to function correctly will need to be replaced with hormone replacement medication, usually Levothyroxine.

If enough medication is not given, the effects can be far reaching as thyroid hormones are used in every cell in the body. Usual symptoms are fatigue, weight gain, hair falling out, dry skin, loss of outer third of eye brow and many more.

However many members also report some very strange symptoms but most resolve once adequately medicated. I myself had all the above as well as a hoarse voice, a violent and prolonged dry cough, blood in my urine and high creatatine levels indicating kidney problems. Soon after taking Levothyoxine, all these symptoms disappeared

Are you taking medication yet Sofiefisher?

As previously advised you will need to post your thyroid hormone test results complete with ranges for members to comment. All your symptoms sound hypothyroid but without results it is hard to advise.

GP's are not thyroid experts, they are general practitioners and often a doctors

"normal" may not be the same as what we know is to be enough.

People who have an auto immune disease are more likely to have another such as rheumatoid arthritis. The higher the antibody count, the more vulnerable you are to the auto immune system attacking other parts of the body.

Many have found a gluten free but nutrient dense diet helps to manage a high antibody count.

It is also imperative to have optimum levels of Vit B12, Vit D, Folate and Ferritin. Ask your doctor to test these and supplement any deficiencies.

Remember to post results and believe you will get better with the correct treatment.

Flower007

lisabax profile image
lisabax

As flower has said it would be good to know if you are on thyroxine. Normal blood tests are not necessarily normal for everyone. Do you have, or can you get a print out of your thyroid blood test results and post them on here for people to comment?

Marz profile image
Marz

I was diagnosed with Hashimotos in 2005. The TSH - FT4 - FT3 were all in range - I had a scan and the nodules and raised anti-bodies clinched the diagnosis. I was prescribed T4 to support the thyroid whilst under attack - my Docs words - not mine !

Keeping you untreated for so long is causing harm to your body....I was 59 before I was diagnosed having suffered endless problems before the thyroid was checked.

Now feeling really well and so much stronger.... hope you are soon feeling better too :-)

shaws profile image
shawsAdministrator

This forum, I believe, is the busiest on HU. The reason is that many of us are left 'high and dry' to try to fathom out why our doctors cannot suss out what is wrong with us. Nowadays, it may be due to the fact that the medical profession have been told to take only notice of the TSH and haven't trained in clinical symptoms, so they take no notice of them even though they have a very disturbing affect on our lives. The following is an extract and even though I think the last para is rubbish, the first few may get your GP to prescribe levothyroxine for you. If you wish to have a copy of the whole article, email louise.warvill@thyroiduk.org.uk for Dr Toft's article in Pulse online:

2 I often see patients who have an elevated TSH but normal T4. How should I be managing them?

The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2

But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.

If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH concentration."

I hope you are successful as some GPs pay no attention to this article (ignorance is bliss I assume). Why do people have to search the internet to solve which is a relatively easy 'problem', i.e. prescribe hormones. It used to be the case before the blood tests and levothyroxine were introduced that we were given a trial of NDT (natural dessicated thyroid hormones) because the doctors also knew the clinical symptoms.

sophiejfisher profile image
sophiejfisher

I am not on any medication yet my thyroid surgeon suggested a trial on a small dose but he said I would have to go back to the GP to sort that but they act like I am making it up. I am being sent to rumatology for more tests next :(

greygoose profile image
greygoose in reply to sophiejfisher

When you say you had the nodule removed, do you mean you had your whole thyroid removed? Or half the thyroid? i didn't know they could just take the nodule and leave the rest.

A trial of thyroid hormone replacement would be good, BUT be warned, if the dose is too low, it could do more harm than good. Very often when they say 'a small dose', they mean 25 mcg. That is too small unless you're 90 years old with a weak heart. What you need is at least 50 mcg - or better still, 75. Anything less will probably cause more problems than it solves.

But, Don't expect your doctors to know anything about it. You have to read and learn as much as you can to take charge of your own health, I'm afraid.

Hugs, Grey

sophiejfisher profile image
sophiejfisher in reply to greygoose

Sorry yes I meant I had my whole left lobe removed.

greygoose profile image
greygoose in reply to sophiejfisher

Well, then, it sounds like your right lobe is unable to make up the difference. I don't know why this always comes as a surprise to doctors, it happens all the time, you'd think they'd come to expect it, wouldn't you.

Redditch profile image
Redditch in reply to sophiejfisher

Idiots! You're definitely hypo. Have you taken your temperature? I bet you're cold.

I was diagnosed 3 years ago and now take loads of supplements NDT and am gluten and dairy free. I am very well but no thanks to any GP. I would change yours. Not to treat you for your thyroid is unconscionable.

sophiejfisher profile image
sophiejfisher

They just keep saying but your levels are normal except your antibodies. I already eat gluten free diet for other reasons and my antibody level has slightly decreased since before my surgery. But my surgeon said they had trouble removing my left lobe as it was so swollen, (and I ended up with vocal cord paralysis for 4/5 months, luckily it has returned to normal now) is that realated to hashi?(the swolleness)

faith63 profile image
faith63 in reply to sophiejfisher

Too bad you can't Sue your doctors because what they have done is Criminal! You do remove a Thyroid because of Hashi's.

faith63 profile image
faith63

You have been treated poorly and need to find a new doctor now. Louise Warville has a good doctor list, on thi website. Hashi's causes nodules and it rarely warrents biospsys..it's common. Second, if you are given meds once the antibodies are discovered, then i may halt the damage to your thyroid. Also, you have not had all thyroid tests done, like t3. Labs are not very useful when you have Hashi's and not useful for dosing meds, altho most doctors would not agree with me.

Dr. Lowe: No doctor can intelligently decide what a patient should do with her thyroid hormone dosage solely by the results of thyroid lab tests. We can make informed decisions about dosage only when we know the patient's clinical status and have the results of physical exam procedures. Most endocrinologists and other conventional doctors would likely disagree with me about this. But their belief that they can determine correct dosages solely by lab test results is a major reason that millions of hypothyroid patients chronically suffer from hypothyroid symptoms despite taking thyroid hormone. I wish you success in your treatment.

web.archive.org/web/2010103...

langdocienne profile image
langdocienne

After 2 years of complaining of being exhausted, and all of the usual symptoms, my doc finally did blood tests, only to profusely apologise, that I was hypothyroid, and severely anaemic. 10 years later on 125 mcg levo daily, and 210g ferrous fumerate, still not really much better, still exhausted on many days. I am anaemic mainly because I still have heavy periods at now aged 60, but I do have 7 kids, very fertile, not even menopausal. I have found that vitamin D3 10,000iu daily is necessary, as is magnesium copper vitamin k2 mk7. Levo depletes our calcium, and it leads to osteoporosis, but nobody tells us that, we just have to dig for ourselves on the net. I am going to the docs this afternoon, to tell them that I want to try T3, with the T4, I know that they don't want to prescribe this, so if they don't, when I go to Crete to stay with my friend soon, I will buy it from the pharmacy. It is ridiculous to think that we have to contemplate self medicating, but it seems that in the Uk, we do. As I think that many of youknow, that we self medicate when we drink tap water, totally unacceptable, and the sooner that they get the toxic fluoride out of our drinking water the better. It has been proven that it can be the reason that so many of us are hypothyroid. So Sophiefisher, demand levo which is T4 and T3 from your doc, the numbers on the tests look ok often, but they should be going on how a patient fells, as many say, one size does not fit all. What is good for the goose, is often not good enough for the gander!!

sophiejfisher profile image
sophiejfisher

My most current blood test results are:

T4- 15.5 pmol (12-22)

TSH Level- 1.86 miu/l (0.4-4)

Antibody- 57 iu/ml (<49)

If that helps :)

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