Hi, I was told I had hypothyroidism in 2018, I began taking levothyroxine and everything had been fine. Then in 2022 while pregnant I started to wake in the night with palpitations. I’ve been checked out by a cardiologist and my midwife had to get involved for me to be put in b12 tablets as that was quite low. I’ve always been raising my ferritin as that was low but my gp surgery wasn’t interested. Since then my symptoms have been getting worse. Almost like I have hyper symptoms!
I finally get an ultrasound and my gp then wanted to me to see an endocrinologist. I have a lump on the right side of my neck, a little under my jaw that is big enough for biopsy. Also my thyroid shows thyroiditis with lots of cysts I believe. Well today I received a letter from the endocrinologist saying he won’t be seeing me or giving me an appointment to see an ent and that my gp will have to do so but he believes it’s possibly just because of me having thyroiditis and my tsh and t4 is fine.
I’m just a bit upset and lost! For some reason I thought seeing someone would make all this go away. Stupid I know.. I’m really struggling and I feel like every gp I ask for help doesn’t want to know. I don’t want to waste anyone’s time but I feel like my lump should be at least checked. my thyroid is swollen, my neck and ears constantly hurt. I’m so exhausted all the time and just feel unwell.
I was wondering if anyone has been through the same or has any advice please.
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ESSENTIAL to test vitamin D, folate, ferritin and B12 at least annually
Please add most recent thyroid and vitamin results and ranges
Exactly what vitamin supplements are you taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
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 you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
I’m currently taking 50mcg, every time I go back up to 75mcg I end up having more palpitations. When I first started taking levo back in 2018 I was on 25mcg
Im taking a liquid form of iron which includes folate, b12, b6 and a few others as my gp wont let me have anymore blood tests at the moment. My ferritin was 37 in September. This time last year it was 19.
Thank you for all the links! I never knew that when having blood tests done.
My tsh is 3.3
T4 is 10
My gp wont test anything anything else but I did go private for a short time last year and my antibodies where quite high, i’m sure 600 and something but I need to find the paper work.
Scan shows heterogenous echotexture showing multiple ; cyst-like hypochoic areas within them, suggestive of a chronic inflammatory thyroid disease.
There is a circumscribed, oval lymph node with a thin hilum seen at the right neck region ; corresponding to the area of clinical concern. This measures about 11 x 5 mm.
I’m sure it’s nothing to worry about but without even seeing me, i’m just a bit upset i’m left to just get on with it.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 3-5 days before testing
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
My Sympathy for you . Having palpitations is not fun . I experienced it myself for a long time. Raising my T4 dose just made it worse. In my personal experience I will tell you what most Dr's at that time did not know anything about it. I just hope that now they know better.In my case there was several reasons. I was dosing with Synthroid and Synthroid has fillers that I personally don't do well with. It's Acacia. I don't convert my T4 well enough to T3. The Heart has a large Receptor Sights that needs T3. Infact all our muscles and our heart is a muscle. Our brain cells in fact from our heads to our toes and everything in between needs and works off of T3. Adding some T3 to my T4 made a Huge difference. Iron is very very important too.
I wish I would have known about all this back when I had TT and experiencing the awful palpitations. B-12/folate, magnesium, vitamin D/K2. This is some food for thought. I hope it helps you.
Im taking a liquid form of iron which includes folate, b12, b6 and a few others as my gp wont let me have anymore blood tests at the moment. My ferritin was 37 in September. This time last year it was 19.
What is the name of the iron product you are taking? Is it something you bought yourself? Or was it prescribed?
There are a lot of iron products with very little iron in. A lot of people can't absorb iron very well, so a low dose product isn't helpful and it lengthens the time it takes to improve.
Vitamin B6 can cause symptoms in overdose, so it is important to know how high a dose you are taking.
Vitamin B12 needs to be of the right form, and in a high enough dose, for people to benefit from it.
If your product contains folic acid, that is a poor way to raise folate for many of us.
today I received a letter from the endocrinologist saying he won’t be seeing me or giving me an appointment to see an ent and that my gp will have to do so but he believes it’s possibly just because of me having thyroiditis and my tsh and t4 is fine
There’s an incredible shortage of knowledgeable thyroid specialist endocrinologist
We see this all the time …..referral refused if TSH and Ft4 are “normal”
Just testing TSH and Ft4 is completely inadequate
But all NHS will typically do
Get FULL thyroid and vitamin testing yourself as first step
Improve vitamin levels to optimal
Fine tuning Levo dose
Frequently necessary to always get same brand levothyroxine
Assuming cause is autoimmune, get coeliac blood test BEFORE trialing gluten free
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet GP should run coeliac blood test as per NICE Guidelines
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
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
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Then in 2022 while pregnant I started to wake in the night with palpitations.
Ferritin is a measure of your iron stores. People can also be tested for low serum iron as part of an iron panel, although it isn't commonly tested in the NHS. Do you know what your level of ferritin is? Have you had an iron panel tested recently?
Low iron and low ferritin are common amongst patients with thyroid disease, and it can cause various noticeable symptoms, such as palpitations, fast heart rate (medical name = tachycardia), breathlessness, weakness, tiredness. It is a common cause of TATT i.e. Tired All The Time. Doctors in my experience have sometimes treated TATT with anti-depressants rather than iron supplements. Guess what - that doesn't work for very many people. I ended up having to treat my own low iron and ferritin. It can be done because private tests with finger-prick samples of blood and without the permission of a doctor can be bought online. And iron supplements of various kinds can be bought without prescription.
Interpreting the results of an iron panel, and treating any high/low results is not obvious, so if you were to get such a test done write the results in a new thread and ask for feedback.
Hello there!U described exactly what i experienced at the endnod 2023. I was diagnosed in 2020 with hypo and I went onto 100mg of levothyroxine and I seemed to thrive.
Suddenly in 2023 November I started having unexplained palpitations. I was somewhat confused and convinced that I was becoming hyper. But the tests all came back normal.
I went to a cardiologist too all tests were normal. I lived in fear of the palpitations because they came thick and fast and without rhyme or reason.
Eventually after also 30 trips to the GPS and various consultants I was told that this was generalised anxiety disorder and depression despite not having any life issues that could have triggered either.
I reduced my dose to 75mg, I started taking vitamin D and did a hell of a lot of CBT and therapy.
Was recently found to have low haemoglobin so waiting on the prescription.
I guess I don't have any meaningful suggestions but your experience makes me feel less alone and convinced I wasn't losing my mind nor making things up.
Thank you for sharing. Sending you good vibes and I hope you're feeling better
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