New here and very confused!

[Smorzando]

Hello everyone,

I'm fairly new to this wonderful forum but have been "lurking" for several weeks and reading as much as I can.

A little bit of background. I have had issues with my health for many years now; in 2012 I developed extremely dry, inflamed eyes and became very, very ill with depression and anxiety in large part due to the appalling (lack of!) treatment by various doctors.

In the course of all this I had various blood tests as it was suggested it could be autoimmune related (although ANA tests were negative).

In 2012 a thyroid test showed TSH of 3.40 (0.35-5.0) and FT4 18.1 (9.0-21.0).

In 2014 another test showed TSH of 3.35 and FT4 15.3 (same ranges).

Fast forward to 2019; for a year or more I have had worsening symptoms of extreme fatigue, muscle aches and pains, cold hands and feet, low mood (although I've been on antidepressants for over three years). I also have carpal tunnel like symptoms which resulted in a visit to an orthopedic surgeon, who requested a TSH test along with Folate and B12.

I got a phone call from the GP surgery last month to say my thyroid results were "borderline" and I was to have them retested in 4-6 months. When I asked for numbers, I was told my TSH was 6.54 (I assume same range as above).

Over Christmas, and after doing much reading on this forum, I decided to order a blood test through Blue Horizon (Thyroid + 11) and I will attempt to attach a photo ofy results.

My head is in a total spin about all of this -not helped by the fact that I've been awake since 3am! If you've read this far, thank you so much, and I would enormously appreciate any help with working out what I need to do from here.

Many thanks

[MichelleHarris]

Welcome Khaw I’m a newbie too! No wonder youre feeling poorly with those results ! and also shows your antibodies are high. Are you getting any treatment?

[Smorzando in reply to MichelleHarris]

Hello, thank you for replying!

No, I have no diagnosis and am not on any treatment. Yeah, I am feeling pretty awful so I really hope I can start to find a way forward.

I have made an appointment with my GP but that's not til 27th January (the first one I could get with the only GP at the practice who might listen to me!)

[MichelleHarris in reply to Smorzando]

Someone more knowledgable than me will be along soon x

[Smorzando in reply to MichelleHarris]

Thank you so much again Michelle for replying, I'm feeling quite anxious about all this now and am facing a long wait to speak to the GP. So many questions and Google isn't helping much! 😔 X

[Smorzando]

Hi, just bumping this to ask specifically:

- does this look like Hashimoto's considering the lack of Tg-antibodies?

-should I start trying to increase my woeful ferritin levels before seeing the GP? (eg with ferrous sulphate) As it's three weeks til I can see her

-when I see the GP should I be asking for a trial of levothyroxine? I'm confused as the levels of FT4 and FT3 aren't as bad as I was fearing but obviously the TSH is very high.

Thank you to anyone that can help me, I don't know where to start with all this.

[greygoose in reply to Smorzando]

Actually, bumping doesn't work on this forum, I'm afraid. But, I'm sure a lot of people will get around to reading your post when they have time.

Yes, you have Hashi's. You don't have to have both sets of antibodies positive to qualify. And, in fact, the NHS doesn't recognise Tg antibodies as suggestive of Hashi's, and don't even test it for that.

No, don't try and raise your ferritin. It's so low that it needs further investigating. You need to show these results to your doctor and point out the low ferritin, high TSH and high antibodies. And, if he has any intelligences whatsoever, he will start treating you. He needs to do a full iron panel to find out why your ferritin is so low.

Your Free levels aren't so bad because the TSH is flogging your thyroid to make more hormone. And, also the levels don't quite match because you have Hashi's. With Hashi's, individual levels will jump around. But, as doctors only tend to look at the TSH, it should be obvious that you need treatment. If your doctor witter on about doing another test in three months blah blah blah, point out to him/her that waiting three months won't change anything as far as your Hashi's is concerned. That will still be there because it doesn't go away, and the attacks on your thyroid will continue making you even more hypo. Best to start thyroid hormone replacement now, to support your thyroid during these attacks.

So, the first thing to do is make an appointment with your doctor.

[Smorzando in reply to greygoose]

Thank you 🙂 and I apologise if I broke forum etiquette!

I have made an appointment to see my GP but that isn't until Jan 27th. I will certainly ask for the iron levels to be looked at as it is definitely a problem.

I am, obviously, worried that she will be reluctant to take the Blue Horizon tests on board since they were done privately; the TSH here is much higher than the NHS test in November, and I know ferritin has come back as "normal" when tested by the NHS in the past.

I already take Vit D (Better You spray 3000IU) but perhaps I need more.

And would starting on a good B vitamin tablet be a good idea now or should I also hold off on that?

Thank you again 🤗

[greygoose in reply to Smorzando]

No, you didn't break any etiquette. It's perfectly logical to assume that what works on all other forums would work on here. But it doesn't. lol

Yes, some doctors do object - perfectly illogically - to private blood tests. They take it as some kind of insult to their capacities, or something, I don't know. What they should be doing is thanking you for saving them money. Point out to your doctor that the actual testing is done in the same labs as the NHS testing. It's just the accountancy that is in a different building. But, if s/he wants to waste money and redo the tests, fine. Discrepancies can be put down to having Hashi's - if s/he actually knows what that is.

Your folate is actually fine. Personally, I would want my B12 higher than that, but it's not drastically low. It's the vit D that is the problem. As you're hypo, you really want that up around 100. So, you could start supplementing that yourself. But, your doctor will no doubt think it's fine because it's in-range.

[Smorzando in reply to greygoose]

Interesting!

I don't eat meat, eat plenty of veggies, and live in Scotland, so the vitamin results make sense, really 😉

[greygoose in reply to Smorzando]

Do you eat eggs and dairy? If so, that's where you're getting your B12. But does make sense of the folate.

[Smorzando in reply to greygoose]

Yes, I eat eggs and I love my dairy products!

Some years ago (2013 maybe?) I tried going gluten, dairy, and sugar free for three months (very strictly). I didn't see any improvement at all, sadly although I know a lot of others do. I'm also quite slim and I lost way too much weight doing that, ending up with a BMI of about 17...

[greygoose in reply to Smorzando]

Gluten/dairy/sugar-free didn't do anything for me, either. I just got very, very bored! lol

[Smorzando in reply to greygoose]

Haha, I feel you! It's very restrictive. I just became very thin and stressed out (well, even more thin and stressed out than usual!)

[greygoose in reply to Smorzando]

I lost a couple of pounds, but nothing to write home about. But, then, my tendency is always to water retention, anyway, so wasn't expecting to lose much. We're all different, us hypos. Some of us gain weight, some of us lose it, and some of us find no change at all. We all have our own individual set of symptoms.

[Smorzando in reply to greygoose]

I clearly have a steep learning curve ahead of me 😬

My tendency is to lose weight I guess and I wonder if being slim is another factor in the doctors refusing to see hypothyroidism, even though I have a family history of it.

[greygoose in reply to Smorzando]

Oh, probably, yes. They have a very rigid view of the symptoms that constitute thyroid problems - rigid and limited.

[Smorzando]

Thank you - yes the leaden tiredness is very debilitating.

I don't actually eat meat, and I am very reluctant to, so I will most likely need to find a supplemental source.

I do in fact have very heavy periods, although that only became the case in the last couple of years (I'm 45 next week!) Definitely could be contributing to the low iron levels and worth looking into.

The reason I'm waiting til the 27th for the appointment is because it's with a GP who is kind, considerate, and knows me. I would much rather speak to her than anyone else. I'm very anxious about any doctor visit due to my history of many years of being "written off" and badly treated by many others 😔

[Smorzando]

thank you so much for the advice. I'll go read your story now 🤗