Where now? Advice on next steps

[Julesboz]

Hi, I'm now a few months into my "what's wrong with me" journey. In March my doctor thought I had thyroid issues based on my symptoms. My bloods came back and she diagnosed me with iron deficiency anaemia and folic acid deficiency. She said my thyroid was fine despite my free T3 being borderline (she did get an endo to check).

Since then I've been taking ferrous sulphate and folic acid (prescribed) and vitamin b12 (self medicated as my levels were low but not deficient).

I've now paid for medichecks to repeat my bloods and here's the comparison

Ferritin March: 8 (range 15-300), June: 111.7 (range 13-150)

Vitamin b12 march: 330 (range 180-700), June: 585 (range 140-724)

Folate March: 4.1 (range 4.6-18.7), June: unable to measure due to lack of blood

TSH March: 1.32 (range .27-4.2), June: 2.16

Total T4 March: 73.6 (range 59-154), June: 81.6

Free T4 March: 12.48 (range 12-22), June: 15.63

Free T3 March: 3.39 (range 3.10-6.8), June 3.91

VItamin D March: not taken, June: 61.91 (range 50-200)

(Medichecks doc has advised but d supplements as this is low)

Thyroglobulin antibodies June: 12.56 (range 0-115)

Thyroid peroxidase antibodies June: 18.05 (range 0-34)

(Note, march bloods were taken at 2pm after food and exercise, June ones were taken at 8am on an empty stomach)

I now have the following questions:

1 - how can I be vitamin d borderline insufficient? I'm outside for at least 2-3 hours every day without sun tan lotion.

2 - should I continue taking iron and b12 as levels are much better?

3 - my previous tests for thyroid antibodies showed nothing, I now have some, what does this mean?

4 - I had decided to take my docs advice and treat the iron/vitamin deficiencies in the hope that my thyroid function would pick up. It is marginally better (free T3) but that measurement was taken first thing so it should be. Should I go back to the docs?

I should say that my symptoms are getting better. I'm no longer totally exhausted and breathless all the time. I'm not so cold and my hair and nails are better. However, I'm still achy and have low tolerance to exercise. My sore mouth/tongue hasn't got any better and I still have GI issues. My doc has tested me for celiac and that has come back fine.

Thanks in advance for all your help!

[shaws]

Both B12 and Vit d are pro-hormones so have to be at an optimum for good health.

Your doctor should prescribe Vitamin d3. You should also supplement B12 with methylcobalamin sublingual (dissolve under tongue) as most times we can have digestive problems (i.e. low acid).

It is recommended that B12 should be around 1,000. This is a previous post:

healthunlocked.com/thyroidu....

Other members will respond re your other results

[Julesboz in reply to shaws]

Shaws, thanks very much for the quick response. I've already started taking 25ug of vitamin d per day (from today, I went to the chemist to buy some). I just can't understand how I can be deficient when I spend so much time outside!

I've also been taking methylcobalamin vitamin b12 1000ug per day, again self prescribed. I'll continue till the levels are raised to nearer 1000 then. Again I can't understand how I'm deficient in this or iron as I eat a lot of red meat, green leafy veg and mostly whole natural foods. I don't drink or smoke and take regular exercise (not excessive either).

I'll wait till others come back for a response on the other questions. Thanks again!

[greygoose]

1) It just goes to show that being outside for 2 - 3 hours isn't always enough. Who knows why.

2) You should go onto an maintenance dose of B12 and iron. if you stop, the levels will probably drop again.

3) It means that antibodies fluctuate all the time.

4) Taking iron and B12 were hardly likely to improve a struggling thyroid. Your Frees may have improved slightly, but they are still much too low. Your TSH is higher because it was tested earlier, but is still too low compared to your Frees. Your doctor is not likely to diagnose primary hypo from that, but you could try suggesting central hypo to her (if she's ever heard of it, which is doubtful) where the problem is not with the thyroid itself, but with the pituitary or the hypothalamus, meaning that not enough TSH is secreted to stimulate the thyroid to raise the Frees.

[Julesboz in reply to greygoose]

Thanks greygoose. What's a good maintenance dose of B12 and iron?

Also I've already suggested secondary hypothyroidism to the doctor (as per previous threads). She was very good and took it seriously. She contacted an endo who suggested pituitary bloods. They all came back 'normal' apart from borderline excessive prolactin (results in another thread). The endo concluded I was fine, which is why I decided to try and follow her recommendations to up my vitamins and minerals.

I feel much better now so am not sure if it's worth pursuing it any further or doing anything more? I'm just concerned that the docs are saying my thyroid is fine, but have no clue as to why I've become deficient in many things, especially with my diet and lifestyle. That's really why I posted this time. To get some knowledgeable opinions. I just feel a bit in limbo and am worried that if I leave things I'll get bad again.

[greygoose in reply to Julesboz]

For B12, it would be 1000 mcg. For iron, I don't know.

So, what blood tests did they do for the pituitary? And did they investigate the hypothalamus? Because the pituitary could be fine, but there could be a problem with the hypothalamus not stimulating the pituitary to make TSH.

I wouldn't completely give up on thyroid, if I were you. I would get tested from time to time - on the NHS, if possible, or privately. See how it goes.

[Julesboz in reply to greygoose]

Thanks, I'll investigate the maintenance dose of iron.

These are the pituitary test results. They were supposed to do growth hormone too but apparently that had to be done at hospital and my docs surgery didn't realise.

LH 3.8 (2.4-12.6)

FSH 4.7 (3.5-12.5)

Oestradiol 445 (45-610) I use a topical oestrogen/progesterone cream as my hormones used to be low

Cortisol 271 (170-500)

Prolactin 480 (102-496)

And thanks for the advice re not giving up on the thyroid. You do wonder if you're making things up when everyone's telling you you're fine, so it's nice to hear another viewpoint!

[greygoose in reply to Julesboz]

Well, most of them are a bit on the low side, aren't they. But, doctors think that anything inside the range has just got to be perfect! I think an eye should be kept on those, too.

[Julesboz in reply to greygoose]

Oh, and no, the hypothalamus wasn't even mentioned!

[greygoose in reply to Julesboz]

Typical! They probably don't know where it is. lol

[Saggyuk]

Just so you're aware, the coeliac blood test is unreliable and states so on the NHS coeliacs page. Can only be ruled out by endoscopy and this isn't 100% reliable and wont rule out gluten intolerance/NCGS. I have been diagnosed with NCGS by NHS but can't normally be tested for and wont normally be diagnosed.

If you are continuing to have GI issues and a sore mouth, I would try and resolve this by working out if intolerant to any foods etc. Gluten is sometimes the most likely so you could maybe try gluten free for 3 months to see if anything improves but has to 100% GF. If no improvements, you could try a six week elimination diet to check for other intolerances.

Good Luck

[Saggyuk in reply to Saggyuk]

I also just read a minute ago that high cortisol can stop you absorbing vits and minerals lol!

[Julesboz in reply to Saggyuk]

Saggyuk, thanks for that. My cortisol is quite low so I don't think it's that. I'm already lactose, soya and alcohol intolerant so it has crossed my mind that gluten may be playing a part in this. I must admit I think I'm in denial because the thought of going gluten free is quite scary! Perhaps if the other issues don't clear up, I may give it a try.

[Saggyuk in reply to Julesboz]

It's really not as scary as it seems. remember most the worlds food is actually meant to be gluten free in it's natural form. At first I just stuck to basics until I learnt more - potatoes/rice/meat/dairy/veg/fruit/nuts/seeds and there's plenty good GF stuff now.

Also, you could possibly turn out like my little one who had lots of allergies but once gave up gluten, they all went away leaving just gluten. Some find they can tolerate dairy again after a while of GF and remember you only have to trial it, only has to be a life long thing if you have improvements lol

[Julesboz in reply to Saggyuk]

Yes, I think I will end up doing it, probably after my holiday this year. Thanks for the advice