Blood Test results - Not sure why I'm feeling this unwell.

[Alanna012]

Hello, lovely people! I had my bloods done via Blue Horizon. Did the finger prick, (but wish I had done Vacutainer as despite sending same day (normal first class) they were not able to get a result for CRP or folate due to sample degrading). Anyway, these are the results taken whilst on 75mg Levo. Please can you clever folks break them down for me? Note: I did take 2 half grain tabs of NDT the week previous, but stopped as I needed to get an accurate reading of levo alone.

Ferritin 31.6 Normal Range 13 - 150 ug/L

Thyroid Function

TSH 5.33 Normal Range 0.27 - 4.20 mIU/L

T4 Total 102.0. Normal Range 66 - 181 nmol/L

Free T4 18.90 Normal Range 12.0 - 22.0 pmol/L

Free T3 4.81. Normal Range 3.1 - 6.8 pmol/L

Immunology

Anti-Thyroidperoxidase abs H 295.0 <34 kIU/L

Anti-Thyroglobulin Abs 13 <115 kU/L

Vitamins

Vitamin B12 H 719 Deficient <145 pmol/L

Insufficient 145 - 250

Consider reducing dose >569

Although the TSH is slightly elevated above the range, Free T4 and Free T3 are both within range. Also B12 is quite above range (I've been supplementing, although not for long, a mere couple of weeks).

So I do not understand why I am feeling so extremely unwell. I feel very hypo with added fibromyalgia associated symptoms. I have brain fog, Joint and nerve pain and constant joint clicking, (my kids nickname me Snap, Crackle and Pop) severe fatigue: one day of work results in me needing 2 days of recovery at home. Inability to regulate my temperature - am freezing, sleeping under 2 duvets and a wool blanket, sometimes with added gloves and socks in bed, yet irrationally overheat in the spring and summer, throat pain, rashes, heavy 7/9 day periods, mouth dryness, crocodile skin, hardly any hair on my head, zero sex drive, insomnia, I spoke about the gastric reflux the other day....I could go on and on! I'm sure you all know the misery. But Im thinking the ranges should be way under considering the severity of my symptoms.

As it is, if I go to my GP with these results, she'll say 'Seeeeee, everything is more or less in range, B12 is fantastic! Then if I'm lucky, put my levo dose back up a bit higher to 100mg so that TSH is just within, and I'll be back were I was at the start of the year as far as conventional medicine goes. But without a leg to stand on.

(It's interesting that my TPO antibodies seem to have gone down a bit though. A few weeks ago they were above 300)

Thanks in advance!

[MissGrace]

I went to see my endo this week - my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase. What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, so they just treat it in the same way. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically it loses the plot. He also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need more of the synthetic stuff than we would of our own - even more than the normal range for some people to get well. The combination of hashimotos and synthetic T4 creates a perfect storm. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges.

[Alanna012 in reply to MissGrace]

Thanks very interesting! Yes it's not the same as our own is it? I suspect I am struggling to convert. I certainly feel over the place, freezing in winter, scorching in summer, my body doesn't know whether it is coming or going! I suspect this is what is happening. Can I ask where you found your endo? Private message me if necessary, although I suppose it depends where in the country you are. I am south east london😊

[greygoose]

Well, if I had your results, I'd feel bad, too. Your ferritin is dire! You need a full iron panel.

Your doctor doesn't understand that it's not about just being 'in-range', it's about being in the right place in the range. Given that a person on thyroid hormone replacement should have a TSH of 1 or under - sometimes they even need it suppressed - your TSH is very high. Well over-range. And you are hypo when your TSH gets to 3. In some countries they've now lowered the top of the range to 2.5!

Your FT4 is up near the top of the range, so you're not under-medicated on levo, but you aren't converting all that T4 to T3, which is just under mid-range. So, what you need is a slight reduction in levo and some T3 added. T3 is the active hormone, and when that's too high or too low, that's what causes problems. Another thing that doctors just don't understand!

I'm afraid the fact that your antibodies can come down a bit means nothing. Antibodies fluctuate. And they could come down to zero, and you would still have Hashi's, because the antibodies are not the disease, just an indication that you have the disease. There are not degrees of Hashi's, there is just Hashi's. And now you know you have it, there's not even any point in retesting antibodies.

Have you tried going gluten-free? Hashi's people are often gluten-sensitive, and cutting out gluten makes them feel better. And, you could try taking selenium to help your conversion. You also need your folate and vit D tested.

[Alanna012 in reply to greygoose]

Thanks! Yes I'm doing gluten free, although I've only been doing it a couple weeks. I've seen some improvement in my occular rosacea and a bit less stomach indigestion, but I expect it's too early to see any drastic improvement. The problem with ferritin is I get these ferritin supplements but they really excerbate my stomach issues and give me constipation and nausea which I already have a lot. So I really don't know how to get my levels higher. I'm taking spatone daily, but my period is really heavy so it's difficult.

I do have NDT which I have taken in the past for a short trial (3 months) and feel a bit better on, sleep much better, but not 100% completely, it contains T3 so I am at a loss as to why I seem not to optimally thrive on either. Perhaps I need a little synthetic T3 then? Which judging by comments here is as rare as gold dust!

[greygoose in reply to Alanna012]

Benefits from gluten-free could certainly take a lot longer than two weeks. But, if you already feel a slight improvement, that's encouraging. Stick at it!

Do you take vit c with your iron supplements? That usually makes things easier. Or, if you can eat liver, try having that once a week.

If you felt better on NDT, why not go back to that? It's often easier to source than T3 - but you do need some T3 from somewhere, yes.