Hi - losing hope, T3 stopped, nodules in neck

[Cirsty]

I feel pretty rubbish at present. I take 100mcg Levo. Was on T3 which helped. Diagnosed 2011. I was made redundant in my job in 2012 due to ill health, never felt well enough to work.

Managed to get a job in care work but I was not eating properly, sleeping properly. I got about 6 hours sleep, weight dropped to 6 stone and I needed to help my mum and dad who were both unwell. Things came to a head a year later and I was back on the dole again. It took months for the circles under my eyes to lighten. My partner said if I didn't leave that job I could've been seriously ill. My shifts were

8am - 9am plus 4 miles there and back

12.30 - 13.30 plus 4 miles there and back

17.05 - 18.05 plus 4 miles there and back

Monday to Friday

Constant back and forth to doctors and endo, reinstated my T3 which helped and did well in a temp job, then got into another temp job and blossomed in that.

T3 is now being taken off me yet again and I feel like I am losing my battle with life. I also have a dental abscess that I need sorting before my honeymoon.

What results do I need to post ? My eyes are puffy, eyebrows falling out, swelling in neck with nodules, dry skin, heavy cycles which come without warning, feeling cold.

Thanks

[Clutter]

Welcome to the forum, Cirsty.

You need antibiotics to treat the dental abcess now or the infection will spread and may kill the affected tooth/teeth.

Who is stopping your T3, and why?

Post your recent thyroid results and ranges and ferritin, vitamin D, B12 and folate if you have them.

[Cirsty in reply to Clutter]

My endo is stopping T3 due to it not giving me any benefit despite me feeling better on it.

[Clutter in reply to Cirsty]

Cirsty,

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

Write to your endo saying that you do feel better on T3 and as advised by the BTA FAQ you wish to remain on it.

[Cirsty in reply to Clutter]

TSH 5.3 (0.2 - 4.2)

FT4 14.8 (12 - 22)

FT3 3.4 (3.1 - 6.8)

TPO antibody >1300 (<34

[Clutter in reply to Cirsty]

Cirsty,

Those results indicate you are undermedicated and need a dose increase. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your endo.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

healthunlocked.com/thyroidu...

[Cirsty in reply to Clutter]

Thanks.

Endo won't increase, I have left a message with secretary

[Clutter in reply to Cirsty]

Cirsty,

Write to the head of endocrinology or the hospital PALS and ask to be assigned a different endo or ask your GP to refer you to someone else.

[Cirsty in reply to Clutter]

I left a message saying I don't understand why he can't see I have undermedicated results with a TSH over range and FT3 at the bottom and why he seems to think I have no symptoms on this dose and with those results.

I am giving him until tomorrow to answer and if no luck I am going back to GP for new referral

[Clutter in reply to Cirsty]

Cirsty,

Your GP can increase dose if you say you won't see that endo again. I would make a complaint to PALS about having T3 withdrawn and being left undermedicated.

[Cirsty in reply to Clutter]

And maybe the fact that being in constant poor health cost me my jobs.

Where do I post vitamin levels? New thread or this one? Am afraid of this being quite long due to the problems I have been having with supplements

[Clutter in reply to Cirsty]

Cirsty,

Start a new thread and say what problems you've had with supplements.

[ShootingStars in reply to Cirsty]

Cirsty, I feel your pain. Aside from the hypo symptoms, some of what you are feeling is probably autoimmune related. Getting doctors to listen and understand what you are saying is very difficult, I know. My TPO was a just a little under what yours is when I was diagnosed. I couldn't get any doctor to give me medication. They all said I either didn't have Hashi's, my thyroid was fine, or if I took medication, I'd end up with Graves. 4-5 months later and no medication, my antibody was past the highest number that the lab could record, somewhere over 6500. It remained there for 6-8 months, then eventually went down to about 1300. The lowest it's been ever since was last summer, 1000. It's currently back up to 3700. I think it was because of having to eat gluten again for a coeliac test.

[Cirsty]

I also supplement iron, D3, folate and B12

[ShootingStars]

Hi Cirsty. I have Hashimoto's, too. All of your symptoms are hypothyroid and Hashimoto's symptoms from not having the right level of both main thyroid hormones, T3 and T4. I take T3 and T4. I'd never go back to any doctor that couldn't interpret my labs correctly and thought I didn't need T3! I can't live without it.

The swelling in your thyroid is called a goiter. It is common with thyroid disease like Hashimoto's or hypothyroidism. Have you had it ultrasounded? It's very important to get a thyroid ultrasound to make sure you don't have thyroid cancer. Thyroid cancer isn't super common, but it happens. Good thing is it's one of the most successful and easiest forms of cancer to treat. As for reducing the size of your goiter, a lot of people find that taking the right level of thyroid hormones usually reduces the size of the goiter. I only had a very tiny goiter that was barely visibly detectable. My medication reduced it's size almost completely.

I agree with Clutter on the antibiotics. Any illness or infection will add extra stress to your body and can increase your antibodies. If you tested your antibodies before the infection started and then tested them now, you'd probably find that your antibodies have increased. I have tested my antibodies fairly regularly through the last few years, and especially when I've been sick. I found that my antibodies increased when I was sick and went down when I was not.

[Cirsty in reply to ShootingStars]

Ultrasound showed thyroid was enlarged with diffuse goitre

[ShootingStars in reply to Cirsty]

Really? That is usually a Graves type goiter. Did they do any further diagnostics? Have you been tested for Graves? You can have both Hashi's and Graves at the same time. You mentioned puffy eyes. This can be edema as associated with hypothyroidism, or it could be associated with the protruding eyes of Graves disease.

[Cirsty in reply to ShootingStars]

Never been tested for Graves. I was sure it was Hashimotos as I have always had high TPO and high TG antibodies.

[Cirsty in reply to ShootingStars]

No my eyes do not protrude. They feel dry and gritty and they water when I go outside some mornings.

[ShootingStars in reply to Cirsty]

That type of goiter is associated with Graves. Dry, gritty, irritated eyes are also associated with Graves. Graves can also have TPO and TG antibodies. One other antibody is tested to identify or rule out Graves. It's called TSI. Have you ever had that tested?

[Cirsty in reply to ShootingStars]

How do I get tested for Graves? I don't think my current endo will test me.

[ShootingStars in reply to Cirsty]

Test TSI