I wondered at what point in an underactive thyroid a person develops a goitre/turkey neck. I have had borderline low TSH = around 6.7 for 20 years on a normal range of 0.3 - 5.0. The only time it dropped (marginally) below 5.0 was when I took Chinese herbal tablets for two years. Even though I have now developed a goitre, I am still refused hormone treatment. I am told by GP that it is not abnormal enough to warrant treatment and my T4 is normal at 11 in a range of 9 to about 24, and also it must be working OK because I had a normal result at one point in the 20 years. I feel very uncomfortable and embarrassed with this turkey neck and have had a cough, croaky voice and painful throat for the whole 20 years. This is put down to hay fever but I have it all year round. The GP will not acknowledge the goitre or turkey neck.
How high is the TSH usually when a goitre develops?
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DelicateInput
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
When were vitamin levels last tested
What vitamin supplements are you currently taking
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
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
Thank you for your detailed reply which is most helpful. I have been feeling rubbish the last few months - extremely lethargic and tired which is unlike me, and over the last 18 months my weight has increased by nearly two stone. I put both these down to not being able to go to the gym and swim and rush out to work like I used to on account of lockdown and working from home, but it is an excessive weight gain. I am really bothered about this turkey neck but the GP will not acknowledge it. I have just moved house (which nearly killed me) so fortunately I have a good reason to change GP but I wonder if the next one will be the same. It seems to me that they have a budget and they don't want the expenditure or any extra work. When the lab results come back, the advice attached to them is just to repeat the TSH and T4 test in six months and latterly one year. They were over the moon when I got a normal result and would not accept either that it was because I had been taking Chinese medicine - I had to stop taking it because of EU regulations. I also find that I cannot concentrate and get awfully muddled up and I wonder if that is also a thyroid issue. By the way, I do not have antibodies - I think I don't take up iodine very well. I had problems when I lived in Switzerland aged 25 and always feel better by the coast.
I don't eat meat - it is very bad for RA anyway but that was not the reason. My main reason is ethical. I eat quite a lot of fish and veg, salads, fruit, dairy, no fried foods - quite healthy but this is from personal taste not because of health consciousness. I hate fatty/fried food which is very bad for RA and increases inflammation. I would think with all fish I eat, I would have enough iodine but I don't think I take it up. I always feel under the weather in inland areas and far better by the coast.
Thanks for the link to the thyroid symptoms. I have some of them, notably Candida which I had in Switzerland and after that suffered horrendously for 14 years until I found my own remedies from Biocare. I am still prone to it after nearly 50 years - the NHS seems to think it is a joke. I feel the heat - which has gone against me in getting any acknowledgment of a thyroid issue because according to my doctors, people with thyroid issues feel the cold. I have red hair and pale skin and sweat a lot - like most people with my colouring. I have a cough and respiratory problems. I also have mental issues lately - can't concentrate, forgetful, getting muddled which is why I like HRT (Tibolone) and the Chinese tablets had a marvellous cognitive effect and reduced the TSH to a normal level. I have always had dry skin/skin allergies and do seem to have some psoriasis. My hair is always falling out but it is quite thick but eyelashes and eyebrows are sparse. I will try to get an ultrasound done on my throat/thyroid but somehow I don't the NHS or my GP will do it. I am really distressed about the turkey neck and grateful for the advice particularly about the ultrasound scan.
Not knowing enough to say whether any of these are advised for thyroid function, but as you say they were having a beneficial effect for you, these Chinese herbs are usually available online from UK sources. My partner was in fact recommended to take Dan Shen for a kidney condition, although it was contraindicated in his case due to medication taken for another condition he has. If you do take such remedies again, do make sure you research them sufficiently, as not all are helpful for everyone.
I can probably get them now that we are out of the EU. EU regulations stipulated that the shops had to pay £35,000 for each tablet type they imported. Most of the shops are small and it was not financially viable. I got them from a reputable Chinese clinic which had the ingredients printed on them. They are made in Hong Kong and when I went to Hong Kong I tried to see if they were cheaper but they were the same price. I also saw them on sale in Australia. I was paying £40/month in 2015 to 2017 and also paying for electro acupuncture though I had more than I needed. Danshen has been approved by the US health authorities as effective against prostate cancer. Dong Quai is mildly carcinogenic, maybe because it is highly oestrogenic. I think both, and probably all the other ingredients, are anti inflammatory which is why they relieve rheumatoid arthritis. I know there is a nasty trade in Chinese medicine but the ones I took were fine.
Right now I am just wondering how severe thyroid deficiency needs to be before a goitre develops. I am also wondering if it is reversible. Really, I am fed up - just about everything I have ever suffered from in my life I have had to cure myself whether it is endometriosis, candida, rheumatoid arthritis, allergies - they could not even work out an infection with listeria or pylori. I had to pay for the tests myself and spell it out to them. What is wrong with the NHS, I wonder, for me to get to the state of developing a goitre when I have had abnormal thryroid results for 20 years. It is all very well letting people cure themselves but it ruins many years of your life while you search for a diagnosis and cure and it can be very expensive.
Hi DelicateInput, possibly one for you to research on the side but I’m just picking up on the mention of RA and psoriasis as I got the impression your RA is self diagnosed. Psoriatic arthritis is very similar to RA, is autoimmune and inflammatory. One autoimmune condition so often leads to others. With form for one, your GP really should consider the possibility of others ie Hashimotos. Just mentioning in case you hadn’t considered PsA 😊
Thanks. The RA was diagnosed at an NHS hospital by a consultant radiologist - it showed up on ultrasound and MRI though the blood tests were mostly normal. The thyroid TSH was not and has been ignored by GPs and specialists alike. I do seem to have some psoriasis as well as when it started I had a rash on my foot and I get the odd crusty patches. He was adamant that it was RA from the scans. The first diagnosis I got privately was gout! No such thing as doing investigations - they just come up with these things off the top of their heads. It was because I had a very high urate levels but these can be high for different reasons and do not mean gout.
I picked up the form for the thyroid tests but the GP has only requested a test for TPO antibodies, not TG antibodies. I think I am just going to add TG antibodies on.
I was looking on the internet and found that people with hypothyroidism are prone to suffer urticaria. I have suffered from this on and off for the last 20 years and it started at the same time as the raised TSH blood test results and my persistent cough and throat problems including swelling.
I am taking very strong antihistamines and I wondered if that would interfere with thyroid function for the tests which I am having tomorrow. These are prescribed for hayfever caused by tree pollen though they help RA as well.
I intend to get an ultrasound done on the thyroid once I have the results. The pieces of the jigsaw are falling into place but it is a pity I have had to suffer so much for 20 years. I find it hard to believe that the GP surgery could be so totally ignorant and I think all they are concerned about is costs.
RA is autoimmune and makes other autoimmune disease more likely
GP should have tested thyroid antibodies
TPO and TG thyroid antibodies
Plus with obvious goitre you need ultrasound scan of thyroid
You are legally entitled to printed copies of your 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.
Many thanks again. In the past, I have had antibody tests which were normal but not in recent years. I am 73 but had thyroid issues at 25 when working in Switzerland which is very mountainous. I just assumed I do not take up iodine very well. Vit D is low, just within normal range. Others not tested. I had parietal antibodies 20 years ago but tests were not repeated.
I have on line access to my GP records but nearly all historic records have been removed. Fortunately, I have a file with all my blood test results, private and NHS, over the last 20 years and the TSH has been abnormal for the last 20 years - but probably longer as this is when I first started having tests done. I was seeing a specialist for the cough which nobody can diagnose. Yes, I do have RA - it is hereditary as my mother had it. There is also something which triggers it and I have some pronounced allergies. I got very badly bitten in 2013 by green gnats and had a severe allergic reaction. A year to the day, overnight, I developed RA, just after the allergy disappeared. I take anti histamines and notice these are very good for the RA so I do think there is an allergic link to it.
What exactly do you mean by 'I think I don't take up iodine very well'? Do you mean your thyroid doesn't take it up? Or that it doesn't get into your blood from the gut?
I don't think either are common problems, but iodine deficiency could be a cause ofgoitre. Eating an excessive amount of what we call 'goitrogens' - cabbage, brussel sprouts, beans, pease, onions, pears, peaches, strawberries, soy - especially soy - could have this effect. But, you'd have to eat an awful lot of them.
Or, do you mean you think you're iodine-deficient? If so, you should get a non-loading urine test to find out.
Did these Chinese herbs you were taking have a high iodine content?
Hi, I seem to suffer from thyroid symptoms more in inland or non coastal areas. I feel a lot better by the coast. I do not think the thyroid takes up the iodine. I do not eat soy either at all or very much. I do eat veg regularly - asparagus, beans, peas, carrots, potatoes, pak choi, cauliflour, some broccoli, onions, peppers, courgettes and also quite a lot of fruit inc peaches, pears, strawberries and all berries, pineapple, passion fruit, apricots, mango. I do not have more than the five a day usually. The Chinese herbs contained Dong Quai, Danshen, frankinsence, myrrh, liquorice. Dong Quai and liquorice are highly oestrogenic which could have given an improved cognitive effect but it was really remarkable. I was asked to review and amend a highly complex document at work and told it was really complicated and would take all day but it was needed that day if possible. I had finished it by 11 am without any error and was congratulated. They would not have got it if I had not had my Chinese tablets because without the tablets my mind wanders and I cannot concentrate or remember anything. It has been really hard of late as I have been doing jobs requiring advanced IT and I just cannot remember anything. I used to take the tablets for RA. My hands swelled really badly, were painful and I could not use them properly to do almost anything (write, turn a key, fill a kettle, hold a cup etc). I had stopped taking them as I had run out and the shops could not get any on account of EU regulations but I found a bottle in the cupboard. I took a few over a day or so and my hands were almost normal. Electro acupuncture had a similar effect. Anti histamines help as well. I have suffered mentally for a long time. I bought some tablets (ginko baloba) from the health shop to improve my memory and put them in the medicine cupboard, only to find an identical bottle that had expired two years earlier which I had forgotten about. The mental issues and goitre are seriously worrying me.
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