Struggling with high thyroid antibodies

[HashimotoKid]

Hi, I'm a 54yo woman who is after some advice please. I've pushed my GP to do bloods tests, results as follows

TSH 3

antibodies 1217

Free T4 13.1 (the labs normal range is 10-20)

All other tests, ferritin, B12, folate, Vit D etc are normal..

My symptoms are as follows:

Weight gain. I stuck to an 800kcal a day diet for 2 months and lost all average of 1½kbs a week

Oedema: swollen tight skin on calves and feet

Tremors: hand tremor (saw a neurologist 2 years ago for this, he said it was physiological. I had low iron levels at the time and he said that anything that puts a stress on your body will exacerbate a physiological tremor. It resolved after a course of iron, but had returned).

Head tremor: I was sent to A&E 3 weeks ago to exclude a stroke. MRI fine.

Serrated tongue

Exhaustion

Feeling"spaced out" all the time and terrible brain fog

Incredibly dry skin (I'm applying an ointment thicker than vaseline too my fave multiple times a day and it's still dry)

Peeling nails

Numb hands (little finger side, so not classic carpel tunnel ) and feet on waking, pins and needles

Unexplained infertility (despite numerous IVF rounds)

Always freezing cold (wrapped in blankets despite 22 degrees in house)

Skin is cold to touch to others when on holiday and over 30 degrees

Hoarse voice. I lost my voice entirely for 6 weeks after an acute infection last December. However I still remain hoarse.

Hives on fingers intermittently

I think that's it!! So I'm feeling pretty fed up to be honest. Waits to see an endocrinologist on the NHS are 12 months here. Does anyone have any advice as to whether it would be worth seeing someone privately (I'm not highly paid-i work for the NHS). I don't want to feel like I'm wasting a week's wages to learn/gain nothing.

I would really appreciate any input. Thanks in advance.

[HashimotoKid]

Ps I've been talking 2000ius of vitamin D daily for for years to get a normal level.

[PurpleNails Administrator]

Welcome to forum.

“All other tests, ferritin, B12, folate, Vit D etc are normal..”

Add actual results & lab range. In range is not same as optimal.

Has iron panel been done to monitor levels? As you have history on low iron. Iron shouldn’t be supplemented unless you know you need to.

NHS generally go by TSH Levels and “wait” until this is abnormally high to consider replacement hormone. The issue is TSH isn’t very reliable. The FT4 & active FT3 is what causes symptoms & it’s doesn’t look like FT3 wasn’t tested, which is often the case.

Was it TPO antibodies? Assume that’s above lab range. The FT4 on lower side.

Many use private blood tests. If you consider visiting a private endocrinologist arrange a complete blood test first to get most out of appointment.

[HashimotoKid in reply to PurpleNails]

I really appreciate your advice, thank you.

[Regenallotment Ambassador]

hello and welcome 🤗

I’d say you have a low FT4 problem, many of the symptoms you list can be helped with raised FT4 FT3 and better vitamin levels.

Loads of info on Hashimoto’s here 🌱

[GlowCoach Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

What time of day was this test taken? Highest TSH is at 9am or earlier, TSH varies throughout the day.

TSH needs to be 2.5 or lower for conception. btf-thyroid.org/pregnancy-a...

Exactly what were your vitamin levels with reference range for each test? Just being within range is not enough, we need OPTIMAL levels, usually in the upper quarter of the range.

Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Do you do tests as per the protocol recommended here?

Recommended blood test protocol: Test at 9am (or as close as possible), fasting & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.

[HashimotoKid in reply to GlowCoach]

Great advice, thank you. I'll will complete my profile later.

[greygoose]

Hi HashimotoKid, welcome to the forum.

Does anyone have any advice as to whether it would be worth seeing someone privately (I'm not highly paid-i work for the NHS). I don't want to feel like I'm wasting a week's wages to learn/gain nothing.

Unless you know of a really good endo that actually knows something about thyroid, I wouldn't bother. 99.9% of them are diabetes specialists that know nothing about thyroid but think they know it all. They often make things worse rather than better with their crazy ideas.

There are some good ones, of course, but finding them is hard. Taking pot luck on just any old endo is usually a waste of money. Go by patient recommendation, not the recommendations of other doctors.

[HashimotoKid in reply to greygoose]

Thanks so much for this. I'm actually married to a doctor who has been less than sympathetic..

[Jazzw in reply to HashimotoKid]

Oh dear. 😢

Sorry to hear that.

You do have Hashimoto’s autoimmune thyroiditis, that much we can tell you quite confidently. So your thyroid issues are likely to deteriorate over time.

Have you tried asking your GP whether you could try a trial of levothyroxine,

If they try telling you you’re subclinical, it might be worth saying (innocently), “Doesn’t sub-clinical mean I shouldn’t have any symptoms? Because I do!”

[HashimotoKid in reply to Jazzw]

Ha! Thanks, I might just try that 😂

[greygoose in reply to HashimotoKid]

Why doesn't that surprise me.

I once worked with a doctor's wife and she told me her husband was very unsympathetic and unsupportive when she or one of the children were ill. His attitude was just 'suck it up and get on with it'. One hopes he would have been more forthcoming had it been something serous! But who knows.

[HashimotoKid in reply to greygoose]

I really don't think he sees Hashimotos as serious. He even said that we didn't know it was causing my weight issues. It's why I think I'd really like to see a specialist. Thanks for your support. I'm glad I found this group, I really needed some support.

[greygoose in reply to HashimotoKid]

As far as that is concerned he thinks like the majority of doctors: thyroid problems aren't really problems! They just don't learn enough about it in med school to understand how serious it really is.

And for that reason, thyroid specialist are very few and thin on the ground. You'd be lucky to find one. Please don't make the mistake of thinking that an endocrinologist will know what he's talking about where thyroid is concerned. Despite the name, which implies they know everything about the whole endocrine system, they really don't. They only vaguely know a bit about diabetes, from what I've heard!