Newbie, Hyperactive? Hashi's? Who knows, advice needed.

[Ownedbyamuddyspaniel]

Hi.

I'm 55, female, perimenopausal.

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

[humanbean]

No radiotherapy/chemo but lots of surgery.

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 :

healthunlocked.com/thyroidu...

Symptoms of low B12 : b12deficiency.info/signs-an...

Symptoms of low folate : b12deficiency.info/folate-b...

Symptoms of low iron : thewayup.com/newsletters/08...

Symptoms of low vitamin D : medicinenet.com/14_signs_of...

[SlowDragon Administrator]

Definitely get vitamin levels tested

Ideally BOTH TPO and TG antibodies for Hashimoto’s too

What vitamin supplements are you taking….if any

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and 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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

[Stickybiscuit]

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.

Best wishes,

Stickybiscuit

[Ownedbyamuddyspaniel]

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.

[Tina_Maria in reply to Ownedbyamuddyspaniel]

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.

[Ownedbyamuddyspaniel]

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?

Blood test results

[greygoose in reply to Ownedbyamuddyspaniel]

Multi-vits are not a good idea - we always advise against them on here for all sorts of reasons. The main one being that they contain things you don't need and shouldn't be taking, but also because if they contain iron, that will block absorption of most of the other ingredients. It really is best to get nutrients tested and just take what you need.

A goitre is a swollen thyroid. The thyroid can swell for several reasons but it very often indicated Autoimmune Thyroiditis - aka Hashi's. So, essential to get both Hashi's antibodies tested: TPOab and TgAB. The NHS will rarely test TgAB believing that it won't be high if TPOab is negative, and this is entirely untrue. So, you'll probably have to get that tested privately. Same goes for FT3. Even if the doctor requests it, the lab can refuse to do it if it considers it unnecessary - and it nearly always considers it unnecessary because, to be brutally honest, no-one in the NHS has a clue what it is! (There could be more sinister reasons I suspect, but I'm a cynic.) The average GP certainly doesn't know, and wouldn't be able to interpret the results even if it were tested. So, again, best to get that done privately, but at the same time as an FT4.

Just one point about this forum: if you reply to someone's comments, you need to click on the blue 'Reply' button so that they will be notified that you've replied to them. Tina_Maria probably doesn't know that you've replied, so I've tagged her for you.

[Ownedbyamuddyspaniel in reply to greygoose]

Ahh thank you greygoose , I'd missed the reply button and thank you for your response and tagging Tina_Marie.

My GP has been trying to get T3 tested but the lab simply won't do it so I need to get that done privately.

I've got nhs bloods on the 26th including hopefully thyroid antibodies, B12, Iron and D so once they come back I'll know a bit more and also what hasn't been tested and then I can mop the rest up privately with my meno bloods.

I know we can diagnose anything on Google but the me I read about Hashi's the more I wonder about it, I already don't eat dairy and practically don't eat gluten as I know that neither makes me feel good. GP is going to test for coeliac so I'm having to eat gluten for some weeks to test that.

Thank you 🙏

[greygoose in reply to Ownedbyamuddyspaniel]

You're welcome.

[Tina_Maria in reply to Ownedbyamuddyspaniel]

You can take your Vitamin D right up to the day before the blood test, and as you are taking a low dose, it will not make much difference at present. I would strongly consider increasing your dose to at least 3000IU per day (plus the Vit K2), so your Vitamin D levels can increase.

The only thing you should stop 5-7 days before a blood test is biotin (Vitamin B7), as this will interfere with the assays for the thyroid function tests.

And as greygoose has mentioned (thanks for the tag! 🙂), you are better off supplementing the key nutrients you need. Your mean cell haemoglobin concentration is high, this could be an indication of low Vit B12 and folate. I would test these to get a baseline value and if low start supplementing with a good Vitamin B complex.

[Ownedbyamuddyspaniel in reply to Tina_Maria]

Thanks for commenting again Tina_Maria

I've ordered K2 which should arrive today so I'll up the D3 and add the K2. Are you suggesting upping the dose before bloods on the 26th or upping afterwards?

I'll then hold off making further changes until I've got the test results. I'm not taking the multivitamin at the moment at it has biotin in it.

Thanks again, it is much appreciated. This really is a dark art!

[Tina_Maria in reply to Ownedbyamuddyspaniel]

It all seems indeed a bit of a dark art! 😂 But you will get the hang of it, don't worry. 😉

You can take the increased dose of Vit D3 already, as it won't make that much of a difference within a week, as you are probably quite deficient. The earlier you can start to increase your levels the better, as this will help with your thyroid meds and the calcium too.

[Ownedbyamuddyspaniel]

Bone Profile (SCP)(Adjusted Calcium was 2.2 in Feb which was just under range from a different lab and I've been taking 1000iu D3 since then)

Blood tests