Is it a thyroid problem? Stories from those who found it wasn't would be welcome.

[Jamima]

I've just had an update with my private thyroid doctor who was very helpful when I sounded the alarm on my current meds, and brought my update forward. For a variety of reasons, not least that I'm once again left wondering if this really is a thyroid problem, I've decided to part ways.

I've never had positive antibodies, never had wildly high tsh and always had low frees. My cortisol output is rubbish, my dhea is low and testosterone is under-range. This wasn't really acknowledged and I felt I was left to decide from the 3 options offered, where I should go, entailing yet more months of feeling rubbish/experimenting towards an aim which I'm pretty sure I know the outcome of. I was hoping for guidance based on the evidence I've already given, but that wasn't forthcoming.

If anyone here has had or who might know of others who had presented with thyroid type problems but subsequently found it was something other, I'd love to hear from you. I understand it's a slim chance as it's a thyroid forum, but you never know.

Thanks in advance.

[Agitator23]

Hi Jamima. I've just started Levothyroxine after years with a 'mystery illness'. My TSH has never been above 4, my FT4 latest was 8.8% with TSH 0.7. I've never had thyroid antibodies.

I have finally got a diagnosis of central hypothyroidism. I also have autoimmune damage (despite no antibodies) to my thyroid gland (primary hypothyroidism) evidenced by ultrasound. Have you had a thyroid gland ultrasound?

I also have other hormones out of sync. So, I think I definitely have a thyroid issue but probably issues with other hormones, too. This is just the start of discovery but it's possible to have thyroid issues without following the usual blood test patterns.

I may, of course, have other undiagnosed health issues as well...

[Jamima in reply to Agitator23]

Thank you Agitator23, in a weird way that give me solace, although not for you of course! I agree that it's probably more than just thyroid. I haven't had an ultrasound but will book one today as it's something I should do. I think I too have central, but it's quite rare and even so-called specialists seem to body swerve it. Would you mind saying who diagnosed you?

[greygoose in reply to Jamima]

Not as rare as you might think! If you read on here regularly, we have an awful lot of it.

Doctors, however, believe it is rare, so they are not taught in med school how to recognise it. But reading your post above, it was the first thing that came to my mind. Especially as you say your cortisol output is rubbish.

[Jamima in reply to greygoose]

Yes, I've seen more of it on here, I wonder if it's a new generation of women, because it is primarily mid-age women who are at the pituitary maelstrom stage of life and are just not prepared to accept the 'it's your age', it's all in your head', it's me/cfs', 'your depressed', 'it's menopause' diagnosis and have the means and thank god, the internet, to further research? I think it's central too, my next step is a thyroid scan to see it that throws out any clues.

[greygoose in reply to Jamima]

If it is Central Hypo, a thyroid scan won't tell you much. A brain scan would be better.

[Jamima in reply to greygoose]

I just thought the thyroid scan would rule in/out a thyroid issue. How the hell do I arrange a brain scan?

[greygoose in reply to Jamima]

Well, I'm not sure you can do it on your own.

A thyroid scan could tell you if you had Hashi's or Graves', or nodules. But I don't think any of those things are at the origin of your problems. It would pick up just plain, ordinary hypo, I don't think.

[J972 in reply to Jamima]

100% agree that our generation is not prepared to put up with debilitating symptoms. The cat is out of the bag - and we might bite!

[Jamima in reply to J972]

Yes, very much so. I see some older gen women really struggling with what looks like very obvious endocrine problems and can’t help but feel for them. Bloody miserable lives after 50.

[Agitator23 in reply to Jamima]

Hi. If you look in my profile bio, my story in detail is there, with the answer to your question. Hope it helps...

[Jamima in reply to Agitator23]

Really helpful Agitator23, my god, what a time you've had, I recognise quite a lot of it.

[J972 in reply to Jamima]

Agitator23 Blimey, that’s a sobering read for sure. Parallels with my experience, too. I’ll update my bio with the whole, sorry saga when I feel more up to it. Your user name is very fitting. Huge kudos to you 👏

[SlowDragon Administrator]

I would get an ultrasound scan of thyroid

thyroiduk.org/testing/other...

20% of Hashimoto's patients never have raised antibodies and diagnosis of autoimmune via ultrasound may result

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Personally I became so unwell left on completely inadequate 75mcg dose Levo……I had ultrasound scan of thyroid, MRI for brain tumour, testing for kidney tumour, motor neurone disease, MS etc etc ….All on NHS and all negative. Cause was being left 4-5 years on totally inadequate dose Levo, vitamin deficiencies and some degree of central hypothyroidism and adrenal issues as direct result.

I was lucky with my initial hypo diagnosis via GP …..because TSH wasn’t overly high…but thyroid antibodies were both in their 1000’s

Central hypothyroidism is not as rare as medics believe

[Jamima in reply to SlowDragon]

Thank you SlowDragon - I'll plough my way through that. I may try my GP again and see if I can get them on board with more testing. I'm not hopeful..

[Snooperkitty21]

I did after a few years of chasing possible thyroid issues. I was looking for anything to make me feel better and exploring so many avenues. This forum was excellent and I was on thyroid meds for awhile too at my own request. Turns out I had gotten Lyme disease in 2018 (I don’t remember a bite or rash) and that’s where all my symptoms are from. From my research , some thyroid and Lyme symptoms are the same like brain fog, fatigue etc. I’m now treating with multiple antibiotics and sup but it’s chronic Lyme so I don’t have too much hope to get well.

[Jamima in reply to Snooperkitty21]

Oh wow, I'm sorry to hear that, how did you finally find out? Does Lyme affect the thyroid and did you feel better on the thyroid meds?

[FallingInReverse in reply to Jamima]

I had a friend who got Lyme, which then triggered her hypo.

I don’t think it directly causes hypo, but like many things can trigger onset or exacerbate existing.

Snooperkitty21 that’s a crazy story and I’m glad you got to the bottom of it.

[Jamima in reply to FallingInReverse]

Absolutely hellish, as if there's not enough to try and figure out!

[FallingInReverse in reply to Jamima]

Snooperkitty21 curious, did you ever correct your iron/ferritin?

[Snooperkitty21 in reply to FallingInReverse]

Actually yes I did! It’s great now, at the top of the range but only because the cause was heavy periods and I got an ablation in 2021. That’s when I though my Lyme symptoms were iron-related but I’m happy with no period and good ferritin levels!

[Snooperkitty21 in reply to FallingInReverse]

It is so crazy I agree!! I ended up having to send my bloodwork to a reputable out of country lab to find out. My domestic test here in Canada came back negative which I now know just means the infection isn’t recent but the neurological damage is done.

[Snooperkitty21 in reply to Jamima]

I don’t know if lyme affects the thyroid (probably does as Lyme affects everything!) but what I was doing before finding out it was Lyme was asking my doctor to put me on so many different meds as a trial because neither of us knew why I went downhill rather suddenly with no other medical issues before. We tried thyroid, iron, female hormones and even adhd meds (I don’t have adhd) and nothing was working. I did not feel better on thyroid meds. My numbers were ok for thyroid, I did have low but in range ft3 and ft4 and good tsh, negative antibodies. I just had to try meds for everything and it ended up taking 4 years to find out it was Lyme.

[FallingInReverse in reply to Snooperkitty21]

Great story, even better to read it knowing how it ended. Read back through your posts and for you it must give your flashbacks to rmemeber the confusion of it all.

Lymes is definitely a common one that is most often overlooked. I am even more impressed that you got a second opinion on a blood test.

I asked about iron as I also thought you’d bounce back if the root cause was not hypo-caused-poor absorption.

Great all around. And congrats on solving the mystery!

[Jamima in reply to Snooperkitty21]

Thank you, you were very lucky with your doc, I can’t imagine having someone so co-operative, a true pro. Your low ft3/4 is interesting in the presence of another illness, I wonder if it’s true of other illnesses? I hope you find a way to manage the Lyme, from something so small, it certainly packs a huge punch on our bodies.

[FoxyTed]

hi Jamima, yes me. Within range TSH but below range T4 which fluctuated and low T3. GP dismissed this, I went private to Endo and and he only tested TSH and unfortunately for me my T4 had risen to 16!! So he said my problem wasn’t thyroid even though I had so many devil debilitating symptoms. My next test I paid for again with horizon and it showed T4 of 11 and T3 low again also. I really feel for you, it’s bad enough but when our NHS medics are unwilling to help it’s much worse. I have been put on T4 50mg (privately AGAIN)!! I’m still on this journey - long story. This forum teaches us so much! Find someone who is willing to listen, test and know what to do.

Best wishes 🌼

[Jamima in reply to FoxyTed]

Thanks so much FoxyTed - always reassuring to hear from others with similar levels as it’s a head scratcher when it’s not instantly obvious ie. high tsh/antibodies. My levels were similar: low everything essentially but all within range which = ‘you’re healthy’ in medics terms. I hope the Levo works out for you, and yes, without this forum I’d be in a right mess, as I imagine so many people are.

[Insomania]

I feel like I'm still not there but that thyroid is part of the story.

I've never had high TSH but my FT4 and FT3 were around 50%, I have an enlarged goitre and iron deficiency anaemia, low B12, low vitD and so many symptoms going back 6 years. I've had two low adrenal saliva tests a year apart.

I've done one year on NDT Armour with private Dr and have had some improvement, FT3 is 70%+ fatigue is much better but is still around and I though I sleep longer now, I'm still reliant on heavy-duty sleeping tablets. Menopause is on the horizon. I'm looking at improving my Adrenals now.

[Jamima in reply to Insomania]

Thank you Insomnia- I think, like so many women on here, our sex hormones and meno confuse the picture significantly, and any remaining symptoms after thyroid meds may be due to the flummox as we approach/wrestle with meno. If you haven’t had sex hormones tested, it might be worth it as low/wildly fluctuating sex hormones wreck sleep. Low androgens are also present with low cortisol. Addressing those issues might bring more balance. Adrenals also a massive part of the picture, I still need adrenal support daily. I suppose you’ve addressed the iron/b12 and vit d?