Advice appreciated

[Coops27]

Hello everyone

I have recently joined Thyroid UK. I was diagnosed hypothyroid in 2010 and have been maintained on a dose of 150mcg of Levothyroxine.

My GP reduced me down to 125 mcg in June 2016 when my TSH result came back as 0.17 (normal range 0.35-3.50mU/L). It was repeated in Dec 2016 and came back as 5.29, so my dose has been increased back up to 150mcg. At the time, I also requested the nurse to do my Ferritin levels as I have historically always been low on this (highest I've ever been is 28ug/L since my diagnosis). My Ferritin level came back as 12 (normal range 23-300ug/L).

I saw my GP last month. I'm not sure if it was because she was running an hour behind with her appointments but I didn't feel like she listened to me or the symptoms I am experiencing. She prescribed me Ferrous Fumarate 210mg tds after I asked for them and said if I didn't feel any better in two weeks then to go back. Unfortunately I had to stop taking the Ferrous Fumarate last week due to the effects it was having on me!

I took some advice offered to others on here, to send off for a Blue Horizon blood test and my results came back yesterday as followed:

CRP: 0.20 (<5.0 mg/L)

Ferritin: 16.5 (20-150 ug/L)

TSH: 0.33 (0.27-4.20 mIU/L)

T4 Total: 91.7 (64.5-142.0 nmol/L)

Free T4: 17.73 (12-22 pmol/L)

Free T3: 4.31 (3.1-6.8 pmol/L)

Anti-Throidperoxidase abs: 251.5 (<34 klU/L)

Anti-Thyroglobulin Abs: 26.0 (<115 kU/L)

Vitamin D (25 OH): 17 (Deficient <25 nmol/L)

Vitamin B12: 244 (Insufficient 140-250 pmol/L)

Serum Folate: 11.64 (8.83-60.8 nmol/L)

I am due to see my GP again on the 27th. With these results, what should I be expecting? Do you think my GP is likely to treat the deficiencies or will I need to self-medicate?

Your advice would be most appreciated. Thank you very much.

[startagaingirl]

Hi - well you can probably expect to be brushed off and told everything is ok, wheras it quite plainly isn't. Your ferritin level is being addressed but did she tell you to take each tablet with 1000 vit c to aid absorption and reduce digestive effects? It also must be taken 4 hrs away from levo and other supps.

Folate and vit b12 work together and both are very low, but I an sure she won't address as both are within range. You could supplement with 5000/day of methylcobalamin sublingual plus a mixed B capsule, ideally with methylfolate form.

Vit D is also very low. If she won't address, then supplement with 5000iu/day for 3 months then re-test. You are aiming for 100-120 and excess can be toxic. With this it is important to take vitk2-mk7 to send increased calcium uptake to bones rather than arteries and magnesium (several compounds available - I use citrate).

Your ft3 is a bit low and your t4/t3 conversion isn't great. Sorting out your nutrients might help a bit, but you may need to consider taking some t3 (unlikely to get on nhs but easily available privately).

Your anti-bodies are positive for Hashis - were you aware of this? This is usually linked to a leaky gut and food intolerances. A strict gluten free diet may well help, possibly dairy and others as well.

Lots of info and links on all of these in other threads so try searching in box at top for more info.

Gillian xx

[Coops27 in reply to startagaingirl]

Thank you Gillian for your reply.

I've recently found out from this forum, to take Levothyroxine with just water and an hour before food and drinks. Also to take the Ferrous tablets 4hrs after Levo, as well as fasting and not taking my Levo prior to blood tests. None of which any of my GPs have told me before.

I did not know I was positive for Hashimoto's but I will look into this more now.

I know very little about T3. How much should I consider and what range should I be aiming for?

I will certainly buy the vitamins that you have suggested.

Thanks again

Coops

[shaws in reply to Coops27]

Hashimoto's proper name is Autoimmune Thyroid Disease and is the commonest thyroid gland dysfunction. The antibodies can be lowered by going gluten-free as it is the antibodies that attack the gland till you are completely hypothyroid. I'll give a couple of links:

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[Coops27 in reply to shaws]

Thank you for the links Shaws. I did ask my GP last month if I was positive for Hashimoto's (she didn't know), as I had read on this forum that a gluten free diet has been found to be beneficial but she told me that unless I was a coeliac it wouldn't help!!

[shaws in reply to Coops27]

Doctors are poorly trained nowadays with regard to dysfunctions of the thyroid gland. Considering it drives our whole metabolism.

I believe they are told (if they do a blood test at all - none of mine did) that a TSH and T4 will reveal if the person is hypothyroid. In the UK that means TSH has to reach 10 before diagnosing - in other countries if TSH is around 3+ they are diagnosed.

Doctors seem to be completely unaware of clinical symptoms, do not know that if antibodies are positive (they don't know either) that antibodies attack the thyroid gland till we are hypo. Do not know that a TSH 1 or lower is preferable. The treatment is exactly the same as for hypothyroidism regardless of the TSH.

chriskresser.com/the-gluten...

hypothyroidmom.com/10-reaso...

So, we have to be our own educators unfortunately.

[startagaingirl in reply to Coops27]

Hi Coops, I would be inclined to try and get your nutrients up a good bit first as you are well off optimum.

Optimum for - vit D 100-120, b12 approx 1000, ferritin 70+, folate 30+

At well off optimum levels, you would find it hard to tolerate any t3 as it is much more demanding of the body because it is an active form than the t4 levo which is for storage and then conversion to t3.

There are some brands of vitamins & minerals that are better than other. In general avoid multi-vits, own brands (incl H&B) as they will tend to be cheaper, less bio available forms. Some good brands widely recommended are Solgar, Jarrow and Thorne. Also Better You for d3. If you search in the forum I am sure you fill find other recommendations and detail on dosing. Timing of these round levo is important and again, search or start another post about this - I am not an expert but others definitely are.

Keep asking and learning and it will get better.

Gillian xx

[Coops27 in reply to startagaingirl]

Thanks again Gillian. I have ordered the brands you have recommended.

I will keep learning and hopefully feel more energetic, focussed, warmer and less achy soon!

[judburke]

You need to ask your Dr why your blood tests are all so low and ask him to test you for Coeliac. Low Iron/Ferritin is a classic symptom. You can have Coeliac without having the expected symptoms of running to to the toilet, losing weight, stomach cramps. Your only symptoms might be unexplained low levels of vitamins and not feeling right. Have a look at the Coeliac UK website for more information.

It can be common for us to have more than one auto-immune issue sadly. My two are UAT and Coeliac - I only had unexplained low vitamins and lacked energy so I had a big shock when I asked Dr to explain why I wasn't absorbing supplements and then he tested for Coeliac which proved positive.

Good luck finding out what is going on

[Coops27 in reply to judburke]

Thank you for your reply. I will ask my GP to test me for it.