Help with results

[pooky70]

Sorry for the long story, just thought it would be useful to have some background!

I'm 46 and had a thyroidectomy 10 months ago, no hyper or hypothyroidism had been diagnosed as my blood tests always came back within range but my gland had grown to 10 times the size of a normal one. Following surgery I was put on 150, then 125 then 100 mcg of levothyroxine. All this time I had symptoms of strong anxiety, heart pounding, panic attacks, restlessness etc. Results on 100 mcg after 8 weeks were TSH 0.7 (0.35 – 5.5), 15.8 (10 – 19.8) but we lowered to 75 because of symptoms. And of course after feeling amazing for 10 days I started suffering from strong depressive and anxious symptoms so increased to 90 and started feeling better if not great. After 8 weeks results were TSH 1.79 and T4 12.9 and still feeling anxious and depressed. Usual story, GP didn't want to run any other tests and said I was quite simply suffering from depression and anxiety that cannot be linked to thyroid treatment and should consider antidepressants and therapy (or HRT). I’ve now been on 95 for 7 weeks and here are the Blue Horizon results I received today. Could the B12 vitamin explain my symptoms? GP said she might refer me to endo if I really want to but I’m wondering if it is really necessary if the results are within range. I’m also thinking of seeing a nutritionist.

Any advice more than welcome as I’m getting desperate. Thank you in advance!

CRP 0.40 <5.0

Ferritin 26.0 (20-150)

TSH 1.28 (0.27-4.20)

T4 Total 99.8 (64.5-142.0)

Free T4 16.85 (12-22)

Free T3 5.12 (3.1-6.8)

Anti-thyroidperoxidase abs 13.8 <34

Anti-thyroglobulin abs 13.0 <115

Vitamin B12 230 Deficient <140 Insufficient 140-250 Consider reducing >725

Serum Folate 20.76 8.83 – 60.8

[bluebug]

Your B12 and folate are too low. Go over to the pernicious anaemia society on health unlocked and ask them for advice.

Your ferritin is too low it should be half way in it's range. You can take one ferrous fumerate/ferrous sulphate/ferrous gluconate/ferrous bisglycinate with vitamin C and water. Take it 4 hours away from thyroid hormones and two hours away from anything else. After you have complete the packet/jar wait a week and get a retest. You need to have your ferritin retested to ensure what your level is. Once your level is near or half way in the range as you are post-menopause you should be able to maintain your level by eating liver regularly.

You need to get your vitamin D level tested. City Assays do a finger prick test for around £30. You want your vitamin D level to be around 100nmol/L.

[pooky70 in reply to bluebug]

Thank you bluebug. I've taken Spatone in the past, they have one type that comes with vitamin C, I will give it another go and maybe ask GP if we can test ferritin after a few weeks (I am not post-menopause but possibly perimenopausal). I will also look into having my vitamin D level checked as you suggest.

[Clutter]

Pooky70,

TSH, FT4 and FT3 levels are good and you are negative for autoimmune thyroid disease (Hashimoto's).

Ferritin is very low. I would supplement iron and take 1,000mcg vitamin C with each iron tablet to aid absorption and minimise constipation.

B12 is low and may be why you are symptomatic. Folate looks adequate. Post on healthunlocked.com/pasoc for advice.

[pooky70 in reply to Clutter]

Thank you Clutter, knowing the thyroid levels are good will help me move forward. As mentioned to bluebug I will try taking Spatone again. I have posted on the pasoc forum now and will seek advice from a nutritionist.

[humanbean in reply to pooky70]

Spatone almost certainly won't help. One sachet contains 5mg of pure iron.

When I was iron deficient I was taking ferrous fumarate 210mg, one tablet, three times a day. This dose gave me 207mg of pure iron per day. This was the dose I was prescribed by my doctor. Unfortunately my doctor stopped prescribing after a couple of months, so I took over, and bought my own without prescription. It can be bought online or in some pharmacies. I got it without any problems from Tesco and Lloyds Pharmacies.

You need to get your ferritin level up to about 80 - 100 to have a chance of feeling well. Some people even go a little higher than that.

As Clutter said above, iron should be taken with vitamin C to help absorption and to reduce problems with constipation caused by the iron.

Iron must be taken at least 4 hours away from Levo.

Another way of improving your iron stores is to eat liver. If you do eat meat, try this once or twice a week in addition to iron tablets.

Iron is poisonous in overdose, so regular testing is essential.

If you don't tolerate ferrous fumarate there are other options. Ask for advice on this if necessary.

Good luck.

[pooky70 in reply to humanbean]

Oh thank you humanbean, will forget about Spatone then! Will look into getting ferrous fumarate, maybe through my GP first. And into liver, although not my favourite meat

[puncturedbicycle]

As bluebug says, b12, folate and iron need improving but there is also room for a bump up in meds. In winter some people need a bit more, and many people don't feel well unless their tsh is under 1. The Dr Toft book and/or Pulse article may help.

Having said that you may feel a lot better once your nutrients are looked after.

Are you taking your levo on an empty stomach an hour before food, well away from dairy, supplements etc?

[pooky70 in reply to puncturedbicycle]

Thank you puncturedbicycle, I will probably increase to 100 to start with, I was nervous to go back to 100 and have hyper symptoms again but if I'm fine at 95 there shouldn't be a huge difference at 100 and that's an easier dose to take. Also my GP keeps saying that most people feel better when their TSH is around 2 so that has confused me a bit. I will try to find the book and the article you mention.

I always take levo first thing in the morning one hour before breakfast and avoid having any meds or supplements within 4 hours but I didn't know about dairy.

[puncturedbicycle in reply to pooky70]

Don't worry overly about the dairy thing, I'm second-guessing my reasons for saying that. I can't decide if that is true and I've forgotten the reason or if I'm thinking of something else. If you're taking your meds an hour away from food in the morning that is great, no need to leave it longer because you plan to have milk in your tea.

Well, I'm sure there are people who feel better w their tsh around 2, we are all different, and I bet those people feel better at 2 than they would if their tsh was 3 or 4 or 5. In the end if your levels are well within range, your vits and mins look good and you are still symptomatic you should be allowed to take enough meds to get your tsh toward the bottom of the range (under 1) and t3 and t4 closer to the top and see how you feel.

The higher dose - 100 - may work for you now the weather is colder. Give it a try. Your symptoms sound hypo and as you say that is the tiniest increase. You may need a little more to feel better.

You appear to be converting well but if you still see no improvement after raising dose, improving nutrition etc, you may want to give a little t3 a go. It's the only thing that got rid of my oedema and constipation and got my hair back, and I was already converting well on a good dose of levo but still v symptomatic.

Good luck.