Still investigating cause of issues - help please?

[Julesboz]

Hi all you lovely people, sorry for the long post but I want to give a full picture...

I subscribed to this forum earlier this year when my doctor thought I may have thyroid issues based on my symptoms and got loads of great advice. Long story short, I had investigations (as central hypothyroidism was suggested) but the only thing that the doctors confirmed was that I was anaemic and had folate and ferritin deficiency. Apparently everything else was fine and problems with my thyroid and pituitary glands were dismissed. I was prescribed folic acid and ferrous sulphate tablets. After advice from this forum I also self prescribed vitamin b12 as my level was at the lower end of acceptable.

Anyway after several months of supplementation, my levels were raised and I felt great for the first time in years, despite also being told in June that I have mild chronic kidney disease. I stopped supplementation and also gave up gluten after extensive research and because I was already dairy, soya and alcohol intolerant. Symptoms all disappeared. End of story I thought….. anyway for just over 2 months I felt wonderful. Then at the end of August my symptoms started to creep back, albeit not as bad as earlier this year. I was due my 3 month blood tests for CKD so added some private tests. Here's how things have changed:

- March 2017

Ferritin 8 (range 15-300)

Vitamin b12 330 (range 180-700)

Folate 4.1 (range 4.6-18.7)

TSH 1.32 (range .27-4.2)

(notes the TSH was taken in the afternoon before I knew better and below was first thing fasting privately)

Total T4 73.6 (range 59-154)

Free T4 12.48 (range 12-22)

Free T3 3.39 (range 3.10-6.8)

- April 2017 (to investigate pituitary function)

TSH 2.48 (range .27-4.2)

Free T4 12.48 (range 12-22)

Prolactin 480 (range 102-496)

Cortisol 271 (range 179-500)

Also had sex hormones tested but I used natural progesterone/oestrogen cream so that skews the figures.

- June 2017 (after supplementation)

TSH 2.16 (0.27-4.20)

Total T4 81.86 (59-154)

Free T4 15.63 (12-22)

Free T3 3.91(3.1-6.8)

Thyroglobulin antibodies 12.56 (0-115)

Thyroid peroxidase antibodies 18.05 (0-34)

Vitamin B12 585 (140-724)

Vitamin D 61.91 (50-200)

Ferritin 111.7 (13-150)

Folate >20 (4.6-18.7) - this one was done in may

- September 2017 (no supplements)

TSH 2.53 (0.27-4.20)

Total T4 74.2 (59-154)

Free T4 14.7 (12-22)

Free T3 4.01 (3.1-6.8)

Thyroglobulin antibodies 12 (0-115)

Thyroid peroxidase antibodies 10.8 (0-34)

Vitamin B12 201(140-724)

Ferritin 55.2 (13-150)

Folate 19.98 (2.91-50)

As you can see, in less than 3 months my ferritin and B12 levels have dropped by over ½, my folate and my TSH and T4 levels have all got worse, although FT3 is slightly better. My NHS tests have shown that I am not anaemic yet though.

I posted a question on the PAS forum re B12 asking whether to supplement and got a mixed response. I decided to start taking ferrous sulphate 200mg (just one a day) again and methylcobalamin B12 1000ug once a day because I really don't want to feel how I felt before. I've made an appointment with my doctor at the end of October (first available) and, as I now suspect that the medical profession were wrong to dismiss thyroid/pituitary as an issue, as several people on this forum suggested. So now I would like some thoughts/advice. Here are my questions:

1 - should I also supplement folic acid/vitamin d?

2 - I am intending to order a saliva cortisol test from medichecks to present to the doctor, is that a good idea? Because of my relatively low blood cortisol levels and high prolactin I want the doctors to take the pituitary issues seriously. Should I do anything else?

3 - I’d like to also pay for the private tests for pernicious anaemia but this is getting expensive so I'm going to see if I can convince the doctor to do that via the NHS, has anyone else got any experience of this? Am I likely to get it done, or should I bite the bullet and pay and present the results to the doc?

4 - speaking to a retired doctor recently he said that if I was his patient he would have prescribed me 25mg of thyroxine on a trial basis as my thyroid is obviously struggling. I'm guessing my chances of that are very remote? Is it worth pushing for? I'm not 100% sure on the basis that when supplementing with vitamins/minerals I actually feel very good. I've just got a nagging feeling I should be dealing with the cause of this issue rather than the symptoms. In essence, why can't my body retain vitamins and minerals?

Anyway, again thanks so much for reading, if you did get to the end of my ramblings any additional advice would be greatfully received.

[Clutter]

Julesboz,

TSH >2.0 indicates thyroid is beginning to struggle although FT4 and FT3 are currently within range. Your results don't indicate primary or central hypothyroidism. Your retired doctor friend's inclination to treat with a low dose of Levothyroxine is compassionate but today's NHS treatment is by blood tests, not symptoms, and NHS won't diagnose hypothyroidism until TSH is over range or FT4 below range.

Thyroglobulin and thyroid peroxidase antibodies are negative for autoimmune thyroid disease (Hashimoto's).

B12 and ferritin dropped because you were no longer supplementing. Many of us need daily maintenance doses to maintain levels. Now you have resumed supplementing they will rise. Take 1,000mg vitamin C with iron to aid absorption and minimise constipation. As your B12 is in normal range, probably quite high as you are now supplementing, your GP will probably decline to test intrinsic factor to rule out PA. As supplementation is improving your low B12 symptoms and you feel very good why do you want to test for PA?

Folate is excellent and doesn't need supplementing.

VitD 61.91 was insufficient in June, around 100 is optimal. I would supplement 5,000iu D3 daily x 8 weeks to raise levels and then reduce to 5,000iu alternate days to maintain levels until April when you should retest.

[Julesboz in reply to Clutter]

Thanks for the reply and for the advice re taking supplements and vitamin D.

I can understand why you're questioning my desire to test for PA. A part of me thinks that too. However, I also want to know why my vitamin levels are dropping. I'm 50 not 70 and my parents, who are in their 70s have better health than me. I eat healthily (high fat, low carb, whole foods, minimal processed foods) don't drink, have never smoked and exercise regularly. My weight is optimal (my BMI is about 21). I also eat red meat. There seems to be no reason why I should lose iron and b12 at such an alarming rate. I'm happy to carry on supplementing, but would like to know the cause. I suspect you're right though, the doctors will just look at my results and say you're in range, what's the problem?

[Clutter in reply to Julesboz]

Julesboz,

Low stomach acid not breaking down nutrients is a possibility, even a likelihood, given TSH is rising.

Women losing iron is usually due to menstruation and peri/menopause may make it worse.

[Julesboz in reply to Clutter]

Thanks clutter, yes low stomach acid is more likely for me I guess. My periods have become very light and less frequent in the last 6 months so I would think that's less of a possibility.

[Clutter in reply to Julesboz]

Julesboz,

You can improve stomach acid by taking Betaine Pepsin before meals or raw apple cider vinegar in honey sweetened water or fruit juice before meals.

[Julesboz in reply to Clutter]

Thanks Clutter, I will look into getting some to see if that will help. I'll also get some vitamin d tablets.