Daughter with hypothyroidism

[5219]

Hi my daughter was diagnosed with hypothyroidism about 8 years ago by her Gp. She is on 100mcg Levothyroxine. She has most of the classic symptoms of hypothyroidism along with chronic fatigue, ibs constipation, Raynauds etc. The one thing is she cannot put weight on. In the last few months she has felt like she is swallowing past a lump and feels pressure like she is being strangled and it feels tender around her thyroid. I have noticed it looks enlarged. She went to her Gp who said it’s nothing to worry about it was to do with her asthma. She rang the surgery for her blood test results and the receptionist said she was Vitamin D deficient. The GP didn’t mention this to her when she saw her. My daughter has never been seen by an endocrinologist and I think she should be referred. Also only her TSH has been tested and nothing has been looked into about her other symptoms. I would appreciate anyone’s advice. Thank you in advance.

[thyroidmom84]

Sounds like a goiter to me- very common and I would recommend requesting an ultrasound to check for nodules (which, if present, are typically benign). I would also have her tested for Hashimoto’s by having thyroid antibodies tested.

[Lalatoot]

Not necessarily a goitre. When I am undermedicated my main symptoms are a hardness at the front of my throat where thyroid is, a sore throat that feels bulging inside and a hoarse voice. The voice makes it particularly noticeable to others. This all disappears when I am on enough medication. She needs to get her TSH, FT4 and FT3 done at the same time as well as tests for B12, ferritin, fit D and folate.

[SlowDragon Administrator]

How old is your daughter?

It's completely inadequate to only test TSH

Do you know what the vitamin D result is?

She needs to get the result

Local CCG guidelines

clinox.info/clinical-suppor...

Suggest you accompany her to see different GP and get further testing .....though your unlikely to get all necessary tests on NHS

Does your daughter have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies?

Vast majority of primary hypothyroidism is due to autoimmune thyroid disease

First thing is, do you have any actual blood test results?

if not will need to get hold of copies.

Your daughter is legally entitled to printed copies of her blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation your daughter needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if cause is autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Many people only have raised TG antibodies and struggle to get Hashimoto's diagnosed

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

ESSENTIAL to test vitamin levels and thyroid antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

All four vitamins need to be optimal

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Come back with new post once you get test results and members can advise on next steps

[Muffy]

My daughter was so ill and in her teenage years, she went downhill rapidly. She became so thin, she didn’t want to speak to anyone except us. She had all the classic symptoms of hypothyroidism, always cold, bowel problems, chronic fatigue, croaky voice. A once really bright girl started to struggle with her school work. Her exam results were lower than expected, she did get to university, but not the grades she needed. Luckily, she ended up st a university closer to home as she used to come home most weekends. She was always getting infections, chest, urine etc. By her final year, she was falling asleep when she was studying. I’d taken her to our gp who said it wasn’t hypothyroidism. She saw her uni gp who told her , don’t be stupid, you would be fat if you were hypothyroid! We took her to see the late Dr Skinner who said she was too ill to take her finals, but she said after four years at uni she wanted to go ahead. He increased her thyroxine faster than usual and we watched as she blossomed. Her memory returned as did her zest for life. Finally, he prescribed Armour Thyroid and we had our daughter back. She was T3 deficient that wasn’t helped by thyroxine , 22 years later she is still well. If her go won’t test for all the thyroid tests, could you get them done privately?

[jimh111]

I would insist on a referral to an endocrinologist just to be on the safe side. Also get hold of the blood test results and maybe run one private blood test.

[5219]

Thank you everyone. I will be going to the Gp with my daughter and insisting on a referral and will get private and NHS tests done.

[SlowDragon Administrator in reply to 5219]

Ideally get access to historic blood test results before seeing GP. Then you have more knowledge to argue/insist on particular tests needed

[Marymary7 in reply to 5219]

Worth getting a Medichecks Ultra Vit Thyroid blood test. Follow instructions, fill in the online form and a few drops of blood. Their doctor will give you advice and the antibodies etc. in this test will tell them what is going on. The NHS don't usually test the Thyroglobulin antibodies and in my case these were very raised so the private test gave me the Hashimotos diagnosis which my own doctor missed.

[HLAB35]

Great advice here.. Also, when she's referred maybe ask for adrenal stress profile as well. Teenagers get very stressed and can be deficicient or unbalanced in adrenal and sex hormones .... issues with cortisol can make conversion to t3 tricky when on thyroxine (t4 only) ... the science behind this is complicated but it's been proven to be so. (Adrenal hormones are invariably low in people with low vitamin D).

Read Dr Myhill's website on thyroid, adrenals, gut issues and chronic fatigue.

Also, cutting gluten and dairy out may make it easier on your daughter's gut.... If she is vegetarian then she'll need some supplementary source of b12, but get that checked first along with iron etc.

Magnesium gels by Better You and Epsom Salt baths are a good way to help with muscle cramps that you get with IBS. Oral supplements vary massively in quality with Magnesium and some do more harm than good. However, 'quality' Magnesium does make an improvement to conversion, physical and mental health and cognitive ability. It also helps massively in vitamin D uptake. There is a magnesium, p5p, zinc supplement by Igennus that is very good for brain fog ... which could help with her studies.

[5219 in reply to HLAB35]

Thank you for all your advice.

My daughter is 25 and is short of money making buying a lot of supplements tricky which is why I am going to help her. She had been ill a lot recently so not surprised when told her Vitamin D was very low. She works with small children so picks up whatever is going around. She hasn’t got time to research her condition as she has a busy family life with her boyfriend and 2 step children. I am slowly understanding my own thyroid problem so I am looking out for her too. If she carries on listening to the Gp she will get nowhere and will always feel ill. So we are now going to take charge of mine and her care because no one else will.

[EMargaret]

I have had a feeling like a lump in my throat turned out it was silent reflux but either way she needs to keep going back to her gp for diagnosis

[caledoniancat]

I agree with Hlab35, it may be useful to have adrenals tested, particularly if she does actually have Hashimotos because she may also have Addison's disease (autoimmune condition affecting adrenal function). Also because you've highlighted asthma (I assume a steroid inhaler is in use?), I believe prolonged use of the inhaler may affect adrenals. Addison's disease can cause weight loss and is often misdiagnosed as CFS, anorexia etc. We all want the best for our children, GPs are sadly lacking knowledge in Addison's but it is highlighted in the NICE guidelines as something to be vigilant about when prescribing levothyroxine for hypothyroidism. Best Wishes.