Scared & Unsure- looking for advise on my levels and symptoms

Hi there. I'm new here and this is my first time posting. I would really appreciate advise if you'd be so kind.

I'll try to be short in giving my history. Approx 1 year ago while going through fertility testing it was identified that I had a slightly underactive thyroid and was advised to take 25mg eltroxin. Was told to get bloods again in 3 months. Those bloods were fine (no results provided to me) so was to remain on 25mg and then get bloods again in 6 months.

March -

TSH 13.29 0.3 - 4.2

Free T4 11.4 12- 22

TPO Antibodies 238 0-35

Extroxin increased to 50mg daily

April-

TSH 75.32 0.3 - 4.2

Free T4 8.6 12- 22

TPO Antibodies 320 0-35

Extroxin increased to 150mg daily

Symtoms so far are all pretty consistent, brain fog, extreme tiredness, dry scaly skin, weight gain ( im very active, exercising 3-5 times per week), skin tags, EXTEREME bloating,coldness, heavy irregular periods and bad cramping throughout.

May-

TSH 0.15 0.3 - 4.2

Free T4 25.8 12- 22

TPO Antibodies 202 0-35

Extroxin decreased to 125mg daily

I started feeling better this month, the bloating subsided, my weight gain has appeared to stop. My foggy brain is still there and I have a really hard time concentraing. My heart is having constant palpitations and my stomach always in knots. I am not dealing with general day to day life /work situations. On Thursday I had a panic attack. This is the first time its ever happened and it really scared me.

I went to my doctor ( who is a GP), and I love her, she gets me and I feel like she cares and understands hence never pushing to see an endo. I explained the panic attack and work stresses and she gave me 2 weeks off and gave me my results for this month.

June-

TSH 0.63 0.3 - 4.2

Free T4 20.1 12- 22

TPO Antibodies 138 0-35

Extroxin to remain the same - 125mg daily

I asked to be referred to an endo which she has done but she said I am fine now and CBT would be better for me to deal with the anxiety. This is why im so confused?? And I suppose leads to my questions...

Am I always going to be anxious and continue to have heart palpitations 24/7.

I thought that if I was within the right range I would not have symptoms? And also why do I have have symptoms of overactive? Just to note my mental health has never been a concern before now.

What does the antibodies really mean? I can see that my thyroid is fine, but the disease is still active.This confuses me? Please if anyone can give me any advise I would love it. Also do I have Hashimotos?? The GP keeps saying I have an autoimmune disease?

Today Im scared, its now affecting my work and my family and I am constanstly anxious. I keep asking myself is this the new me? If so, then ok and ill deal with it but I constantly feel like im about to have a heart attack.

Any advise, support, information you can give me would be so welcomed. I am female, 38 and lead a healthy lifestlye. I stay away from processed foods the best I can. I could do better. I drink alcohol withing reasonable limits ( a few glasses of wine at the weekend then more on special occasions)

Thanks!!

[jamiface]

Could you add the ranges in brackets after each result, please?

[Hidden in reply to jamiface]

Hi. I added the range beside eachbut unable to edit to add brackets as the post has been marked inappropiate. Will try to ammend once i reach out to helpdesk. Thanks for letting me know to add range. My error, I assumed all ranges were the same.

[jamiface in reply to Hidden]

Inappropriate? How odd... 🤔

The ranges are different for each testing lab, I think, possibly different for each machine in the same lab, even.

(Hugs) re the panic attack, they're horrible, I know.

Hashimotos = autoimmune thyroid disease

Hopefully someone who knows more than me will be along shortly to help.

[humanbean in reply to Hidden]

Having posts marked inappropriate happens to me sometimes, and I never find out why.

When it does happen I copy the post I'm working on, log out, then log back in, then go into Edit mode on the post I was working on. Then I replace the post with my edited copy and then Submit or Post my changed version.

It's very, very annoying when it happens. But don't take it personally.

[Hidden in reply to humanbean]

Thanks, I was worried I had written something completely offensive.

[greygoose]

Autoimmune Thyroiditis is the same as Hashi's. It's just that doctors don't like calling it Hashi's.

Your doctor may be lovely, but she doesn't know that much about thyroid, does she? She should not have increased your dose by 100 mcg in April. Increments and reductions should be 25 mcg every six weeks - she should not be testing you every month, it's too soon after and increase or a decrease.

And, whilst your FT4 may be in a good place, you have no idea if you are converting that T4 to T3. You need your FT3 tested.

You also need your vit D, vit B12, folate and ferritin tested, because hypos often have nutritional deficiencies. Your nutrients need to be optimal for your body to be able to use the hormone you're giving it.

[Hidden in reply to greygoose]

Thanks greygoose, you are right she is lovely but I had a feeling there was more to just having bloods every 4 weeks. I will push forward with the endo referral . I really look forward to receiving information from a specialist in the field so I can begin to understand what is happening. Many thanks

[greygoose in reply to Hidden]

Well, don't build your expectations too high. The majority of endos know nothing about thyroid, either. I doubt they will give you much in the way of information - or help, either, come to that. They are liable to say your in-range, so they don't even see the point in seeing you.

Most of us are entirely on our own, with this. We have to learn and take charge of our own health, test our own FT3, and even buy our own hormone.

[humanbean]

You have positive antibodies. This will increase anxiety.

Your TSH plummeted from over 75 down to 0.15 in a month. This will increase anxiety too. I assume that these huge swings in your TSH are due to your antibodies being less or more active, although the swing does seem to be rather extreme.

Edit : I hadn't noticed that your doctor increased your dose by 100mcg, which explains the huge decrease in your TSH!

Do you take any supplements? If yes, what are they? And do any of your supplements contain biotin? Biotin can corrupt test results for all sorts of substances. It isn't dangerous. People just have to stop taking it for a couple of days before testing, then they can restart after the blood draw. See why here :

endocrinenews.endocrine.org...

healthunlocked.com/thyroidu......

People with Hashimoto's Thyroiditis (i.e. your thyroid antibodies are positive and you have autoimmune hypothyroidism) need to find a way to reduce the number of antibodies they have and also reduce the activity of those antibodies.

The best way of doing this is to remove gluten from the diet - not most of the time but all of the time. It might not work, but it helps an enormous number of people who have thyroid disease of some kind. Try the experiment for a couple of months and see whether it helps. If you've ever been tested for coeliac (celiac) disease and it has come back negative, don't worry about it. Lots of us get negative results but still benefit from going gluten-free. If you have got no benefits after a couple of months then you can return to eating gluten. But if you start feeling awful you may have to stop again.

There are other causes of anxiety in people with thyroid disease.

1) Low nutrients can cause all sorts of problems, including anxiety, and are very common in people like us. The major ones to get tested to start with are vitamin B12, folate, and vitamin D3 (D3 is more important than D2, which can also be tested). You would also need to get proper iron testing done - for that you need an iron panel and a full (complete blood count). If you can only get one of these go for the iron panel.

2) Another cause of anxiety is having the wrong level of cortisol, either too low or too high. This is best tested with a saliva test. For more info :

stopthethyroidmadness.com/s...

(I'm assuming you are from the US. If you are from elsewhere, let us know.

[Hidden in reply to humanbean]

Thanks so much for the detailed infomation. I am in Ireland, not the US

I take no supplements although I was taking folate. I have stopped this now. As far as I am aware I have never been tested for anything else.

I 100% believe I have a problem with gluten as I bloat very bad after eating it and sometimes have cramps. I am my own worst enemy though as while I limit bread/pasta intake I don't research what else contains gluten (I know its in a lot of foods) . I will be changing this though from today

Thanks again for your post, its really helpful.

[humanbean]

For more info on Hashi's do a google search for Izabella Wentz. She has Hashi's herself, has a website, a facebook page, appears in a few Youtube videos, and has written a couple of books.

[Boohbette17]

Hi smileygirl123. BIG hug about the panic attack. What everyone said is right & I'd like to add . Many hormones are at play w our thyroid function. Guess what has a HUGE influence? Yep- food. Several can halt your life & you dont even think so. I sure didnt but had great results learning from Dr.SaraGottfried - here's info read all the way thru to get the key points without any purchase unless you wish.

saragottfriedmd.com/detox-f...

detox.hormonereset.com/hrd-...

I am NOT compensated merely found her info MY lifesaver!! Plus the thyroid med level . Also, you are just at the age for perimenopause. Dont freak - its normal & usually 10yrs before actual menopause. So chin up. Food first & meds at a reasonabke increments ( or not) - I feel you were given too much & too soon as you went towards hyper. TSH under 1 . I have BOTH thyroid antibodies. Crazy high, cut in half using this doctors' protocols.

Good luck 🌈😊

[Hidden in reply to Boohbette17]

Thanks for the reading material

Oh no to the menopause! Need to have another baby quick.

[Boohbette17 in reply to Hidden]

Absolutely!! If you've lived all your life eating the foods that interrupt thyroid ( gluten& dairy) like me its not necessarily easy but CAN be done & a baby is SOOOO worth it! Keep us posted when your pregancy test shows positive soon! 😊👍🍼🎀

Here is another good site

hypothyroidmom.com/hypothyr...