Trying to understand thyroid test results

[Elle137]

Good morning I'm new here & been reading posts, it's been incredibly helpful.I'm 61, been feeling unwell since last summer, pushed my GP for tests etc but now paying privately for endocrinologist who is testing everything!

My latest results are:

Serum free triiodothyronine 5.6

(3.5-5.8)

Serum TSH 5.32 (0.3-5.0)

Serum T4 8.6 (7.0-20.0)

Thyroid peroxidase 345 (0.0-9.0)

I am not as yet medicated, my symptoms are "long" and it's getting worse unfortunately, I don't have access to the private blood results (as yet) & waiting on results of MRI (brain & pineal) my "brain fog" & forgetfulness is awful so concerned about early onset dementia, I would value any opinions, TIA 😊

Just found these results from last summer:

Ferritin 64 (15.0-200)

B12 280 (180-900)

[greygoose]

Hi Elle137, welcome to the forum.

So, you have Autoimmune Thyroiditis - aka Hashi's - as suggested by your high antibodies. Did you know that? Doctors don't always mention it. Do you know how Hashi's 'works'?

Levels can be very unstable with Hashi's, as witnessed by your results: very low FT4, high TSH and high FT3.

It looks like your TSH is high because your FT4 is low. And your FT3 is high due to a Hashi's 'hyper' swing. So, will doubtless come down with time until is is slightly lower than your FT4 - which is where it should be. I could be wrong, but that is the way I interpret your results.

It is low T3 that causes symptoms like brain-fog and forgetfullness, so this suggests that your FT3 is normally low, and this is just a Hashi's blip. But, on the other hand, your brain-fog and forgetfullness could be due to that very low B12! Your ferritin was also too low. Have you been supplementing these since then?

[Elle137 in reply to greygoose]

Good morning & thank you very much, my GP said that the thyroid antibodies were "slightly raised" but as my other results were within "NHS parameters" the TSH only being slightly above they would not medicate but re test in 6 months, no!! Hence private endocrinologist who wants to "rule out" everything else before medication. I have some idea how hashimoto's works! The antibody test was done December @ 345 & again March at 345? What would you suggest to supplement the B12 & ferritin levels?

I have always taken vitamin D & biotin as my hair has been falling out, saw dermatologist (privately) who told me it was age! But my eyebrows have fallen out & eyelashes are more sparce too, among a list of other symptoms, it is horrible trying to navigate this so I really really appreciate your input 😊

[greygoose in reply to Elle137]

Oh, yes! I got the age thing, when all my hair fell out! And that from a doctor older than me who had a full head of hair! I said, look, mush, your waiting room is full of little old ladies, and not one of them is wearing a woolly hat! I was wearing a woolly hat at the time. That confused him! 😂

To supplement B12, I would take a sublingual methylcobalamin (B12) nugget, 1000 mcg for a week. Then add in a B complex with methylcobalamin and methylfolate (Thorne Basic B is a good one). Then, when the pot of sublingual B12 was finished, just continue with the B complex as a maintenant dose.

Iron is more complicated and you should have serum iron tested before supplementing. Because it is possible to have low ferritin (stored iron) but high serum iron. In which case, supplements are not a good idea and you'd do better increasing consumption of iron rich food rather than iron tablets.

[Elle137 in reply to greygoose]

Thank you so much for the supplement share, both ordered 🙂I read your bio (brave lady) the "doctors" make you feel nuts on top of feeling flipping unwell! Plus, we pay for the privilege of it.......

I hope to have my blood & MRI results next Thursday (25th April) so will update. Thank you again x

[greygoose in reply to Elle137]

You're welcome.

So, you understand why I cut out the doctors and now self-treat!

[Elle137 in reply to greygoose]

I can only relate it to a boundary dispute I had where upon I now know more than the solicitors!! Hence why I asked on here, I'm absolutely sure you know & understand the condition far more than the "doctors" just wish I'd found it before but nevertheless, I'm grateful now x

[greygoose in reply to Elle137]

Sounds like a fair comparaison.

[FancyPants54 in reply to greygoose]

I had to endure a surgery pharmacy medication review on Monday. On the phone. One way or another I decided it best to fess up about the Armour. He had never heard of it and at one point he scathingly and laughingly said "Is this something you just buy off the internet". Honestly, their ignorance is incredible.

I then spent the next 5 minutes educating him on thyroid hormone, grandfathered medications and how we have to jump through hoops and spend a fortune to get ourselves well.

At least he seemed to listen and ask intelligent questions and he didn't cause a fuss.

[greygoose in reply to FancyPants54]

Well, I'm not surprised he'd never heard of it. I don't suppose they talk about it in pharmacy school - or wherever they learn their trade - because it's rarely prescribed. But he should have asked the intelligent questions before he made a fool of himself with his scathing remarks. The trouble with these people is, they think they know everything, and have nothing left to learn.

[FancyPants54 in reply to greygoose]

Yes, if I had been face to face with him the glower I was exhibiting would have wiped that laugh out fast. He made it sound like I might be buying talcum power tablets. They really have no idea. He had a bit more idea in the end though and had quieted down a bit.

[greygoose in reply to FancyPants54]

Good! He went to bed that night wiser than he left it in the morning!

[FancyPants54 in reply to greygoose]

If we could just spark a flicker of interest in some of them so that they perhaps have a think it would be so good. Never happens though.

[greygoose in reply to FancyPants54]

I don't believe they're into thinking. If they did think, they might end up having to admit that they were wrong about some things. And that's unthinkable.

[Rosebud1955 in reply to greygoose]

Hi GG, your conversations are so refreshing. I enjoy your wittiness. You get straight to the point and your advice/suggestions are always so accurate. Although I’m struggling with tweaking my doses in hopes of feeling better for the upcoming summer, you never cease to make me laugh. I don’t laugh much these days because of my (lack of thyroid) struggles and the overwhelming fatigue I face each day. However, your witty responses is medicine to my soul. I feel the same way you do, in regards to doctors. I’m afraid of of them, the vast majority of them are dangerous to our health. Not just in regards to thyroid disease. They operate like robots and are incapable of thinking outside the box. I’ve had my share of mis diagnosis over the years. Very scary indeed. I don’t see my G.P anymore, I just show up in the E.R when I feel ill. Won’t waste anymore time in their offices. Very sad!

[greygoose in reply to Rosebud1955]

It is very sad indeed.

[sparkly]

I understand completely your concern about early onset dementia. I was referred to the memory clinic a couple of years ago but thankfully it was ruled out, i also had ct scan. If not already ask to be referred to put your mind at rest.I feel now my memory issues have something to do with lack of t3 in my brain.

I've had similar results to you once before diagnosed then once when I had to stop meds. My tsh and ft3 was top of range and ft4 at the bottom and feeling absolutely dreadful. I don't have hashi's and always negative for antibodies.

[Elle137 in reply to sparkly]

Thank you for your reassuring message, I appreciate it, you kind of feel "like you're the only one" at the beginning, I've had an MRI done & fingers crossed it's clear for anything dementia related, it's so scary to go through! I have so many "symptoms" It feels endless, doctors, tests etc....this site has been hugely helpful, I'm really grateful x

[sparkly in reply to Elle137]

Also sex hormones can be add to the issue. I'm 99% sure i'm post menopause now and on good hrt regime including testosterone. This was the missing piece which rid me of brain fog amongst other things but hasn't helped with memory issues.Hopefully your MRI will be fine and this will be down to thyroid. Once on medication and your levels are optimal your memory issues will subside. Thyroid and cognitive issues are so common. It's rubbish I know

[Elle137 in reply to sparkly]

I'm on HRT oestrogel (no testosterone) which stopped the flushes (the most debilitating thing ever at that time) the brain fog I put down to menopause (HRT didn't change that) it's the "memory issues" that are most scary for me: I've put on weight (tummy) my nails split & break off, hair falling out (it's now fine, thin & breaks easily) hands & feet swell, joint pain, muscle pain, on the other hand I've had rapid heart rate, boiling hot (like the flushes) it feels like I lurch from hyper to hypo?? I even questioned parathyroid as a new symptom, upper lip movement? But the test was negative? So yes, it's definitely rubbish!! Appreciate your feedback 😊

[sparkly in reply to Elle137]

As GG said you could be experiencing Hashi swing with having antibodies, hence hypo and hyper symptoms. That's something I've no knowledge of. I can say though that you might benefit from testosterone. It doesn't work for everyone but it was amazing for me. Rid me of severe brain fog where I literally struggled to drive as I couldn't concentrate enough. Got rid of all my aches and pains like waking up like a 90 year old woman and struggling walking to the en-suit. It gave me energy to start going the gym, gave me a feeling of wellbeing and just happier overall. Mention to your private Endo.

I think post menopause women tend to have a good response to testosterone as we aren't on a roller coaster anymore with oestrogen.

Please let us know how you get on with your results and hopefully start thyroid medication

[Elle137 in reply to sparkly]

Good morning 😊 my MRI results came back clear, hurrah! I'm thrilled but also full of anxiety about getting treatment as it appears to be a lottery dependent on one choosing a competent endocrinologist! I don't know if mine is or isn't yet, we are still "ruling things out" so no treatment. I have started B12 nuggets (recommended here) selenium (endocrinologist) I was already taking vitamin D (spray with K2) & biotin (hair loss) should I get a scan of my thyroid? I'm seeing GP tomorrow to ask for a full iron panel? I've paid for everything so far so maybe she will agree 🙂 thank you for reassuring me about the brain fog, it did help me whilst waiting for the results!

[sparkly]

That's such a relief for you ruling out early onset dementia. It's a relief but now need to find the cause.Don't let GP or endo brush off the raised ft3 level saying you must be fine with levels so high. I know different when my results were similar and I was floored.

You could do your own bloods via medichecks or other online services as these will be cheaper than paying private Endo, that's if you don't already do it.

That way you have control of your results and can test the same method and time for consistency.

Memory is my biggest issue and I'm convinced it's to do with the thyroid but hard to convince the medical profession when I'm already on good dose of thyroid medication.

Also ask gp if you can have testosterone, oestradiol and shbg blood test. You don't have to be low to start on it, just as long as your not already top of range or over.

Likely gp won't prescribe and waiting list to see nhs meno specialist can be over a year but ask to be referred so will do bloods.

You could purchase online from superdrug but they rip you off. Other online pharmacies would be cheaper.

Hopefully your endo won't drag things out now you've got scan results and can concentrate on your thyroid.