Help with results and medication prescribed

[LushPrune]

I was diagnosed with Hashimoto’s a few months ago after some routine private bloods for peri-menopause issues. TPO antibodies result then was >1300. Was advised by private menopause clinic to see private thyroid clinic. Also went to GP who said he would just monitor with yearly bloods as TSH fine.

But then the private thyroid clinic instead advised I start Armour as I am symptomatic with T4 on low side and said that has better results than levothyroxine. So I am titrating up to 1.5 grains over several weeks (currently on 1 grain).

I am wondering if I need to be on this (or any) dose yet given bloods and if there are any downsides to taking Armour (other than the huge cost!). It is so difficult to know who to trust!

Symptoms (which I til recently put down to peri-menopause (but been on HRT for 2 years and not much improvement) include:

Low mood, brain fog, anxiety, hair thinning, very dry itchy scalp, dermatitis on hands, weight gain, feel the cold, headache, sore muscles in shoulder, neck and hips, heart palpitations, exhaustion, low energy.

Most recent bloods before starting Armour:

Thyroid Stim. Hormone 2.78 mIU/L (range 0.270-4.2)

Free T3 4.1 pmol/L (range 3.1-6.8)

Thyroid Peroxidase Antibodies 153 kIU/L (range 0-34)

Thyroglobulin Antibodies 33.60 kIU/L (range 0-115)

Total Vit B12 296 pmol/L (R145 - 569)

Folate (serum) 5.9 pmol/L R>7

Free Thyroxine FT4 13.3pmol/L (R12-22)

25 OH Vit D 50.5 nmol/L (R 50-250)

Ferritin 52.7 ug/L (R30-207)

I was also advised to take Vit D and folate supplements which I am now doing.

Thanks in advance for any advice!

[greygoose]

Hi LushPrune, welcome to the forum.

Yes, it is difficult to know whom to trust! I do agree that you should have been put on thyroid hormone replacement of some kind, because not only was your FT4 low, but your FT3 was, too: FT3: 4.1 pmol/l (Range 3.1 - 6.8) 27.03%. And it's the T3 that causes symptoms.

However, I can't agree that Armour (NDT) is necessarily better than levo. It can be, for some people, but it doesn't suit everyone. And, yes, it is expensive! Whereas, if you live in the UK, you could be getting levo for free.

The advantage with any NDT is that it contains T3. But, the ratio T4 to T3 isn't always the right ratio for everyone. Some people claim that that doesn't matter because the bulk of T3 comes from conversion of T4, anyway. But, if you are a poor converter, that doesn't help. Therefore some people are better of on synthetic levo plus T3, which is more adaptable.

Starting off on levo is not only cheaper but it gives you an idea of how well you convert. If you don't convert well, then you have the option of adding T3, which is cheaper than NDT if you have to buy it yourself - although some people even manage to get that prescribed, and therefore free.

Treating hypothyroidism is all a matter of trial and error because we're all so different in the way we react.

Another thing I would disagree with is stating you on folate supplements. Folate is a B vitamins and all the B vits work together and need to be kept balanced. Therefore a B complex, containing all the Bs, is likely to do you more good than just folate by itself. And also, your B12 is much, much too low! Dangerously low, I would say because at that level it can cause irreparable neurological damage. Therefore, as I see it, they should have started you off on methylcobalamin (B12) for a couple of weeks before adding in a methylated B complex to raise the folate.

And, did they tell you that if you're taking vit D, you also need to take its cofactors: magnesium and vit K2-MK7?

[LushPrune in reply to greygoose]

Thank you so much for all this info. A lot to take in!

Private thyroid GP just said take high dose Vit D and folic acid and to avoid iron supplements. So I obviously need to fine tune my supplements and add those you mentioned.

I thought my Vit B12 at 296 pmol/L (when the range 145 - 569) meant that I was close to the middle of the range and therefore fine? Can you explain why you interpret it as dangerously low?

Also my GP only looked at TSH - if I went back and flagged the low FT4 and FT3 so you think I would stand a chance of them prescribing levo on the NHS . Have others with similar results been able to get levo on the NHS in your experience?

Thanks again for your help. Thank goodness for this forum!

[greygoose in reply to LushPrune]

The range for the B12 is unrealistic. It starts too low and ends too low. And being close to the middle is not the aim for all blood tests - it's just that docotrs think it is!

The Japanese have done a lot of research into B12 (very few people in the West seem to care!) And they have found that B12 needs to be at least over 550 and below that you are at risk of neurological damage. I think their ranges start around 500.

From personal experience I can tell you that when my B12 was around 350 (can't remember the exact number, it was a long time ago) I was losing the use of my right arm. And I couldn't hold my head still, it kept wobbling about. At first, I didn't connect it to B12, but decided to take some, anyway. The problems went away. I was lucky. But the neuropathy in my feet and legs hasn't gone away from when I was pregnant with my second child and kept walking into walls! But nobody tested my B12. To this day I have to keep my eyes on my feet because my brain has no idea where they are.

Folic acid is synthetic folate. You'd be better off with methylfolate.

I do know of people have got diagnosed on the basis of low Frees when the TSH is also low. Doctors have been trained to go by TSH because the belief is 'it tells you all you need to know'. It doesn't. TSH is a pituitary hormone and the pituitary can go wrong just like the thyroid can. And the pituitary depends on stimulation from the hypothalamus to produce TSH, and that can go wrong, too. This is called Central Hypo, but it is considered to be so rare that doctors aren't taught about it in med school. Therefore, they are incapable of recognising it when the see it - there is a hell of a lot wrong with their education!

I'm not saying that you necessarily have Central Hypo because we don't have enough information. But that is the way it presents: low Frees and a low TSH that does not correspond. But a lot of things can affect the TSH, so more investigation by an endo would be necessary to get a diagnosis of CH. But, it does happen.

[SlowDragon Ambassador]

As thyroid replacement hormone is likely necessary for the rest of your life it makes sense to start with the cheapest option…..levothyroxine

There’s approx 2 million people in U.K. on Levo. The majority do absolutely fine on Levo, especially if dose is fine tuned, vitamin levels optimal and same brand Levo at each prescription

As greygoose outlined……starting on Levo initially is what we recommend

it’s either free on NHS or extremely cheap privately

Getting dose levothyroxine slowly increased over 6-12 months and all vitamins to GOOD levels

And with Hashimoto’s, often gluten free and/or dairy free diet beneficial

If…… once Ft4 is at high levels ….if Ft3 remains low - this shows poor conversion …..then look at adding T3 or trialing NDT (Armour or Erfa)

[LushPrune in reply to SlowDragon]

Thanks both - a lot to absorb - thank you for your help. Will no doubt be back!