Feeling rubbish! Advice please with latest tests, including vits

[luckyed]

Hello all, hope everyone is well. I have secondary adrenal insufficiency, (ACTH deficient) and have been on hydrocortisone for 9 years. Last September I started on Levothyroxine, (25mcg initially, now 25/50 mcg on alternating days), as it appears I’m becoming TSH deficient, and was becoming increasing symptomatic of hypothyroid.

As a result of advice I’ve been given on this forum, last time I saw the endocrine consultant, I requested for my Ferritin, Folate, B12 and Vit D to be tested with my next set of bloods.

I have been feeling increasingly unwell, and now feel worse than I did before I started on Levothyroxine. However last week’s blood tests show that my FT3 and FT4 levels are the best they have been for years (I have been told to ignore the TSH as I am TSH deficient anyway).

I am wondering whether it is due to other factors that I feel so bad (constantly exhausted and done for the day by lunchtime, in a fog most of the day, frequent headaches that last all day, moody and irritable, lethargic, frequent dizzy spells, frequent sore throats and feeling achy – basically my default is feeling tired, low, grumpy, and low-level ill – like I’m coming down with something, I have to try to pull myself out of it every day, and that in itself is tiring, some days I don’t manage it, and I feel for my family – even my 7 year old has commented).

I feel so frustrated by Drs telling me on paper I’m fine! Spoke to the GP after this set and his only comment was that I may be over-medicated on Levo as my TSH was low – so clearly he doesn’t get what it is to be TSH deficient! I have sent the results on to the Endocrinology centre, but I am not holding my breath. I was hoping for some insight from you knowledgeable folk. Here are the latest results:

FT3: 4.2 (range 3.5-6.5) (pre Levo level 3.9}

FT4: 15 (range 11.5-22.7) (pre Levo level 10.8)

TSH: 0.25 (0.55-4.78) (pre Levo level 0.34)

Serum ferritin: 24 (range 10-291)

Serum vit B12: 874 (211-911)

Serum folate: 6.07 (range 3.38-23.9)

Vit D: 81 (range 50-374) – although I have been taking a high dose supplement and soaking up lots of sun

FBC all came back as ‘normal’, except for a high % of hypochromic cells (which I have had consistently for the past few years, but am always told means nothing as the rest of the blood count is within range).

I’d really appreciate any thoughts on these results, and my symptoms. Thanks very much.

[SlowDragon Administrator]

Well obviously with adrenal insufficiency you have to increase levothyroxine dose particularly carefully and slowly.....but you are still going to slowly need to increase dose

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Ft4 and Ft3 are both too low

Ft4 is only 31% through range

Ft3 on 24% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Levothyroxine doesn’t top up your own thyroid output, it replaces it

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Ask to increase levothyroxine to 50mcg per day

Retest in 6-8 weeks

Ferritin is far too low

Ask GP for full iron panel test for anaemia

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Folate also too low .Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

[luckyed in reply to SlowDragon]

Thank you SlowDragon . I actually came across an article by Dr Hedberg late last night. I will have a good read through all those links, thank you.

I have never heard that about avoiding Calcium-rich foods for 4 hours. I have been starting my day with a Kefir smoothie, with 1/2 pint whole milk kefir and big dollops of Greek yogurt! Best knock that on the head then!

I'll try to get the iron tests done ASAP.

Thanks so much 🙂

[SlowDragon Administrator in reply to luckyed]

Or move taking your levothyroxine to bedtime

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

[SlowDragon Administrator in reply to luckyed]

If you change taking levothyroxine to bedtime/or in night

...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[SlowDragon Administrator]

This previous post

healthunlocked.com/thyroidu...

Other members who also have adrenal insufficiency.....some seem to say taking levothyroxine at bedtime/in night works better

[luckyed in reply to SlowDragon]

Thank you for all this info. I had a terrible experience with Teva when I started on Levothyroxine - ended up very anxious and having panic attacks, which stopped almost instantly that I changed to Wockhardt.

Thanks again SlowDragon 😊