I am posting because I am all at sea with what to do to help my daughter. She has been diagnosed with Hashimotos but her blood tests show that her hormone levels are normal. However one of the nodules in her goitre has grown considerably over the last six months and although the biopsy came back without detecting any abnormal cells the consultant wants to remove one side of her thyroid to eliminate any danger of future issues with cancer because it is an abnormal growth. I am worried that her autoimmune response will continue to attack and eventually destroy her thyroid function. The consultant insists that there is no treatment for the Hashimotos but this seems to go against things I have read. I can't sit by and do nothing risking her long term health. Interestingly when my daughter said her goitre size fluctuated the consultant said there is no reason why that would happen insinuating that she was mistaken.
I have another daughter with Coeliac disease and a sister with multiple autoimmune issues including Coeliac disease. There is clearly an inherited propensity.
I would be so grateful for some advice - giving up gluten is an obvious one and we are starting to do that now.
Thanks
Jane
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janedudman
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Perhaps you need more information to be able to make a decision. For example, what does he mean by an abnormal growth? Are there cellular changes and if so what kind? Is the growth affecting other structures in the neck? Has she got antibodies and if so what kind? What are the blood levels of antibodies? Are there alternative ways to minimise antibodies activity? What research supports his recommendation of hemithyroidectomy? What are the risks of watch and wait? How high are the risks?
Could you ask for a second opinion? Your GP may be able to organise a second opinion
Research someone you'd like to be referred to and ask GP for referral.
thanks for your reply. We have a consultation on the 4th so I will put your questions to them. She said it is a solid nodule - in six months it has expanded to something which is over an inch in diametre which makes it abnormal - you can feel it very easily. It isn't causing any discomfort or problems with swallowing. The risks of watch and wait which was my preference is that about 50% of people who do this end up having a hemithyroidectomy after six months anyway and the others carry on being observed. Risk of cancer is what bothers us most but I don't know what the statistics are and I suspect they are not relevant because risk is a very subjective thing in the end I think.
As far as I know, queries about thyroid cancer are investigated with fine needle biopsy and ultrasound, sometimes surgical biopsy. You could ask what type of thyroid cancer the consultant is concerned about and what the percentage risk is of developing it based on the type of nodule.
Thyroid contracts and expands during menstrual cycle so this may make your daughter *feel* that her goitre is fluctuating.
Hashimoto's will usually continue attacking the remaining thyroid lobe. There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it eventually causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies, and may also delay progression to hypothyroidism.
A Hashi flare is when lymphocytes attack or infiltrate the thyroid gland which may cause swelling and tenderness in the thyroid and may cause some cell destruction. In the early days the dying cells can dump hormone into the blood stream which may cause transient hyperthyroidism which doesn't generally last more than 2-3 months.
Some people report feeling fluey or as though they have a virus for a few weeks with a sore and tender throat and neck. When the attack ceases the patient may have symptoms of hypothyroidism as thyroid levels drop.
Repeated attacks will atrophy the thyroid which will eventually become unable to produce sufficient thyroid hormone causing hypothyroidism.
I don't think many UK doctors give credence to how much Hashimoto's can impact on wellbeing. I was told my symptoms were non-thyroidal because I was euthyroid with elevated antibodies. I had to have a thyroidectomy for other reasons and the symptoms I had, swinging between hyper and hypo resolved more or less immediately so I'm convinced the debilitating symptoms I experienced for more than 18 months prior to thyroidectomy had to be due to Hashimoto's.
Hi Clutter, this is so incredibly useful you have made it much clearer. I think she has many symptoms of both hyper and hypo thyroidism and convinced myself that it was just teenage changes but now I wonder. It would explain a lot.
But how do you argue the case with a consultant for treating someone who is considered euthyroid with elevated antibodies. If we can possibly shrink her goitre and keep a functioning half of her thyroid whilst trying to manage her autoimmune response then that would be good. We have sort of accepted that she will have to have the enlarged nodule removed and thus half her thryoid.
She is not euthyroid with TSH >8.0. As I said, she is subclinically hypothyroid and if she was asymptomatic it might be okay to wait until TSH is >10 but if she is symptomatic she should be treated. If the consultant won't treat her get a 2nd opinion.
I see. I don't think she is asymptomatic. She may have only had mild symptoms in the past but over the last six months she has also mentioned what I think people call brain fog. When someone is speaking to her she just can't understand what they are saying - it doesn't go in. For a girl going into her GCSE year with high expectations of herself that could be devastating if it continues to get worse.
Hopefully we will have a full discussion next week. We are seeing the endocrinologist and the surgeon and have lots of questions.
I'm labouring to point out that if endocrinologist or surgeon say TSH 8.45 is subclinical and that is why your daughter isn't yet treated you should point out that she is symptomatic and would probably benefit from Levothyroxine replacement. Use the TUK symptoms list to tick off her symptoms.
Strictly gluten free diet is as you say obvious place to start. Has she been fully tested for coeliac? Endoscopy for diagnosis not just useless blood test
But far higher percentage with Hashimoto's are not coeliac, but do benefit from G free.
Soya free too, including soya lecithin, may help
Flouride free toothpaste
Bone broth to help gut heal, daily probiotic, fermented foods like kefir
Each little step helps
What is her actual test results? Never accept "normal" as a result. She might be towards top of range. She is entitled to ask for copies of her results under data protection.
Always get and keep copies and good records of the results, the ranges and medications and how feeling at the time.
Also ask for vitamin D, folate, ferritin and B12 to be tested. Common to be low with Hashimoto's. Heavy periods are common symptom and can also increase risk on low ferritin and iron.
If not been tested ask that they all are. Supplementing if low can really improve symptoms, medics are often not at all interested in vitamins or nutrition, but they are extremely relevant
Check if you can see blood test results online at your surgery. If you can then she can register for online access. May need enhanced permission for blood test results, again they can't refuse
All surgeries should offer this service from April 2016, in reality very few do.
Thanks very much for your reply and the links. Her tests showed TSH 8.45, FT4 13.6 with positive antibodies. I am pretty sure they did not test for any vitamin deficiency. Her recent test (six months after the first) showed the same range of hormone levels but elevated antibody levels.
It would be good to have more detailed blood test results so I will pursue that as you suggest. She is complaining of having heavier periods and losing pubic hair too.
TSH 8.45 is above the normal TSH range and indicates your daughter is subclinically hypothyroid ie TSH is between 5 - 10 with normal range FT4. Subclinical means your daughter should be without symptoms. If she has symptoms she should be prescribed Levothyroxine to raise FT4 and reduce TSH to between 0.35 - 1.0. Levothyroxine treatment may reduce the size of the goitre as high TSH flogging it to produce hormone can enlarge it. It is unlikely to shrink a nodule, however.
Has she been prescribe levothyroxine because a TSH of 8.45 is quite high although you don't give the laboratory range so I can't be sure. Judging by the normal range in the UK, it would be high although some doctors won't treat until the TSH reaches 10.0 . With the elevated antibodies and high TSH she should be started on levothyroxine. Shaws or Clutter can give you more information to take to the doctor or consultant if needs be. Levothyroxine will help to prevent antibodies attacking the thyroid. She must feel quite unwell with a TSH of 8.45. You could ask the Endocrinologist why they haven't started her on levothyroxine and find out the reasons.
I am a healthy 54 year old woman, but have a similar issue to your daughter's, Jane
Apparently, I have high levels of antibodies and multiple nodules, one of which is visible. I have been referred to an ENT surgeon who did an FNA on that one which had inconclusive results. She recommends surgery, but I feel I have insufficient information to decide whether that is the right course of action. At the moment I am asymptomatic, and assume the thyroidectomy will hasten Hashimoto symptoms. I plan to ask for a referral for a second opinion, and note the useful advice here on getting hold of blood test results
Yes sounds very similar. My daughter's FNA results were also inconclusive but they nearly always are apparently. Only a dissection of the full nodule will really confirm one way or the other. If you see Cutter's comments about a thyroidectomy it seems that it can stop Hashimotos symptoms. I will post what we find out at the consultation.
I dont have hashi, a goitre or nodules but I am quite good when it comes to dealing with medics.
Do not put up with an ignorant GP. Some are happy to throw all sorts of pills at you and insist it cant be thyroid related. They are wrong. I dumped three GPs I now have a good one who recognises symptoms and treats my thyroid not my results, I now feel well.
Most endos are diabetes specialists not thyroid and know very little about hashi or hypo. GPs and endos do not receive training in nutrition, they dont know poor thyroid levels impact gut health, blocking nutrient absorption. Dont expect them to know gluten free can help many lower antibodies and slow progression.
Read, read a lot, there are excellent sources on the main TUK site including what to expect from treatment and symptom checklists. The websites/books/videos by Isabella Wentz and Chris Kessler are often recommended as very useful sources of hashi/hypo information. I bought Understanding Thyroid disorders by Dr Toft, he is a former TUK advisor. It gives a good basic grounding in all the disorders and was about £5 on amazon.
Quantify, ' tired all the time' gets brushed aside but 'used to do well on 8 hours sleep but now wake up tired even after 10' gets more notice. So does 'used to enjoy 5 mile walks with the dog but now can only manage 2 and have to have a nap to recover'. Or whatever is appropriate. Look at the symptom checklist, copy out the relevant ones and score to show what has improved or worsened.
Dont accept normal/fine/ok they just mean in range, not optimal, always insist on the actual results (with ranges) and post for advice so you can prepare counter arguments in advance. If she has raised antibodies, TSH is above range AND she is symptomatic she should be treated, they should only wait til TSH is over 10 if she is symptom free.
Many GPs think we are neurotic females prone to exageration when we insist we dont FEEL normal/well despite 'normal' results. Being stoic will be very counter productive, she needs to be honest, if she says she is fine or it doesnt really bother her much they are unlikely to look any closer. She does not have to put up with feeling unwell, she will need to tell the doctor exactly how things are effecting her, Thyroid disorder creeps up on you, I didnt realise just how bad I felt until it stopped.
Hello. Thankyou so much for your reply. The endocrinologist said categorically that gluten was not a trigger for Hashimotos and that diet did not make any difference. She also said that Hashimotos was just your body attacking itself as if there is no cause or explanation. I didn't pursue it at the time but decided to do my own investigation so that I could counter what she was saying with credible research. This forum has been incredibly useful and made me determined not to let things go.
As far as symptoms go - is someone asymptomatic if they have a goitre? She has other things too but hasn't told the doctor or realised that they are related to her thyroid.
She is right that gluten is not a cause for hashi and we dont know what causes the body to start attacking itself. But there are a lot of hashi patients who swear by it and have sucessfully lowered their antibody levels and the frequency of flares. I dont think anyone has claimed to get rid of all of them. I know Isabella Wentz is a great proponent and wrote a Hashi Protocol book.
From reading previous posts on here I believe the problem is gluten contains the protein gliadin. It is close enough to proteins found in the thyroid that if you have thyroid antibodies they can sometimes also react to the gliadin by multiplying and the thyroid also then comes under attack.
Going gluten free doesnt help everyone but it certainly wont hurt her, if her antibodies dont drop and flares improve or she doesn't feel any benefit she can always start eating it again after all.
Does she have a paediatrition, Im sure I read somewhere that childrens thyroid ranges were slightly different as they are still developing but Im not sure what sort of age that referred to but might be worth a bit of research.
The only other thing to bear in mind is she cant be mostly gluten free it has to be 100% with no cross-contamination, even sharing a toaster etc is a no no for it to stand a chance of working.
I have kept up a drip feed of articles posted to her on facebook and she is so fed up of reading about it she has relented and agreed to go 100% gluten free. My other daughter was diagnosed with Coeliac disease last year so we are all set up for gluten free living.
I think post puberty the ranges for girls are similar to adults but I will check it out.
Its interesting that with so many autoimmune conditions that we don't know what causes them. I guess its like looking for a needle in a haystack.
One other thought you say she has other symptoms. List them to the GP or endo and request a trial of levo. A trial should be offered to see if they resolve. Lay it on as thick as you dare about how much it is affecting her especially in a life changing exam year.
My first GP insisted my hypo symptoms could be cured by anti depressants rather than levo. I told him I was depressed because I felt like crap and his attitude was going to cost me my job. He soon sat up and took notice when I told him work wanted to put me on an action plan due to poor performance. I got my trial and another GP. GCSEs will hopefully have a similar effect.
If you get it insist she is retested every 6-8 weeks and has adequate raises, a starter dose will not fix symptoms but a titchy dose failure is a great excuse to say its not needed. When I first took it, about 10 days in when it gave my levels a nudge, it felt like the sun coming up as those non specific symptoms like brain fog, depression, anxiety and memory issues improved hugely. It didnt last long on such a small dose but was enough for me to know that I was on the right track and insist on further treatment.
Hi Itsjake - I messaged you a couple of weeks ago because you were asking if my daughter would speak to yours about her experience. I see from the posts that you have since had a lot of advice from people and someone has offered to speak to your daughter. If she still wants to talk message me and we can see how we can sort it out with mine, she is more than happy to chat and would like to help.
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