I was diagnosed with Ductal carcinoma in situ (DCIS) in 2016 aged 46. No radiotherapy/chemo but lots of surgery.
In the middle of this, I had a thyroid goitre appear, seemingly from nowhere.
It was reviewed on US as slightly swollen thyroid lobes with multi nodular goitre partly cystic tissue with peripheral halo and perinodular vascularity.
At the time my TSH was 0.46 (0.2-4.5l
T4 - 13 (9-24) no further testing done.
I've been fatigued since then with increasing tiredness, weakness, anxiety, poor sleep, pee'ing constantly etc. In recent years my heart rate has been elevated.
It was assumed that my symptoms were perimenopausal and as I was trying to avoid HRT there didn't seem much to be done.
My TSH has been tested annually since and it has remained close to the bottom of the ref range but always within it. The goitre disappeared in a few months.
From January this year I felt worse and worse, the fatigue, anxiety and overwhelm were such that I was close to giving up work.
In desperation I started HRT at the end of May. I had 7 glorious weeks where I felt fantastic and the majority of my symptoms resolved. I had energy!
Then many but not all of the symptoms returned. I'm reasonably sure I'm absorbing the oestrogen and the level is OK. There are improvements and some symptoms have reduced but the fatigue, elevated heartrate returned as did the thyroid goitre in August.
It started off being left-sided again but has continued to grow and there is now swelling on the right.
This was reviewed on US last week, I'm awaiting the report but again it sounds similar, multi nodular goitre with cystic tissue and vascularity. Nothing sinister seen.
The ENT specialist isn't interested in thyroid function. He did though say that he thought there might be an autoimmune element and potentially the tissue in the nodes is producing thyroid hormone.
THS early September- 0.27 (0.27-4.2)
T4 late September - 17 (12-22)
(Can't get T3 tested)
So, sorry for the long history, I've tried not to miss anything
I was thinking that my symptoms are consistent with hyperthyroidism? But then I read about Hashimoto's and that all looks very familiar but seems to point at hypo?
Having read this forum (thank you!) and some advice on a meno forum, I'm going to do the Medichecks Advanced Thyroid panel with vitamins and antibodies and see what that shows.
I've found a decent GP who has said that once we were clear that the goitre was benign they she'll do an endo referral.
I'm so confused and would value any insight anyone might have or advice on how to move forward. I really want to feel better.
Thanks
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Ownedbyamuddyspaniel
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I've been fatigued since then with increasing tiredness, weakness, anxiety, poor sleep, pee'ing constantly etc. In recent years my heart rate has been elevated.
You could have lost a lot of nutrients caused by bleeding during surgery. And if you have thyroid disease of any kind that could cause you to have low nutrients too.
I think you should ask for an iron panel to be tested, also get vitamin B12 and folate tested. Low levels of vitamin D can make people feel awful as well.
Low iron can cause faster heart rate or tachycardia (heart rate above 100 beats per minute).
Anxiety and weakness is common with low iron and low B12.
For info on the symptoms of hypothyroidism and hyperthyroidism :
Hi Ownedbyamuddyspaniel,Your symptoms sound like your thyroid is now underactive.
I have Hashimotos Thyroiditis, my symptoms were like yours and my TSH results are always anomalous. I was extremely poorly and didn't have the energy to leave the house when my results finally showed as "borderline."
HRT reduces the efficacy of Levothyroxine, even the pessaries, which my GP assured me would be fine.
It can be a hard slog, especially when you feel so ill, getting referred to an Endocrinologist and getting the right dosage and brand of Levothyroxine. Keep pushing for it, you can get your life back.
Thanks everyone for your input, it's much appreciated. I had a GP appointment this morning and was able to go equipped with some further actions and thoughts thanks to this group.
I have found a really good GP for which I am truly grateful.
The bloods that were done last week are mainly fine although the Haemocrit level is just in the lower range which Dr Google suggests could be another thyroid indicator.
My adjusted calcium is only just in range (I haven't got the figures to hand), whereas when I had a private health assessment in Feb 2024 it was just under range. I've been taking D3 1000iu since then and it's only just scraped into range. So the D level might be interesting.
She is going to refer to the NHS Endo centre that I want to go to. She is unsure whether they will reject the referral as technically my tests are "OK". We'll see and hopefully by then we'll have further results. If needs be I'll pay for a private referral.
She will also do the the antibody tests, iron, B12 and D. We discussed T3 that she specifically requested from the lab but they didn't do and I suspect I'm going to have to do this privately.
She's also doing stool samples including coeliac and some other bowel tests.
So far so good, my plan is to see exactly what further tests she does and what comes back. I'm not sure how full the NHS tests are?
I then need to do bloods for the private menopause clinic around the end of November so depending what is outstanding I can mop up any additional then - this probably includes T3 which seems to be impossible to get!
Thanks again, I'm really grateful for any thoughts anyone may have, I find this all really confusing at the moment.
I am glad that you have found a GP you can trust and I hope that she will do the necessary investigations, fingers crossed.
Just a quick comment regarding Vitamin D. The daily recommended amount of Vit D is 800IU. However, if you are deficient or just scraping into the range, 1000IU will not be enough to get your levels higher, even if you also have some food that is rich in Vit D, it will take you a very long time to raise your level significantly. Although levels of 60-75nmol/L Vitamin D are classed as adequate, many people need their Vitamin D at least above 80 nmol/l or even higher to feel well. Vitamin D intake of up to 4000IU per day is classed as safe and as your levels are low there is little risk of taking too much. It is recommended that you test at least once per year to check if the supplementation is working and if you need to adjust your dose (up or down).
In addition, Vitamin D3 should always be taken together with Vitamin K2 (unless you have a clotting disorder), as K2 directs the calcium away from your blood vessels and into your bones. If you also take these together with a magnesium supplement (many people are deficient in magnesium), it helps with the absorption of Vitamin D. The low calcium levels you have can be caused through a lack of calcium in the diet but also low through levels of Vitamin D! So increasing your Vit D intake might be beneficial for your calcium level as well.
Thanks Tina- Maria I've just read up re K2 and ordered some.
I've got bloods again in two weeks. Do you think I should keep taking the D3 before then or stay off it to get a baseline result?
I'm also taking Magnesium glycinate 1800 mg.
I have been taking Well Woman Max multi vit and minerals but I stopped them when the goitre appeared as they contain biotin and I didn't want to influence the thyroid testing.
My FBC's are below if anyone has any observations?
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