One year on and somehow I'm nearly back where I started.

[Cominghome]

This is a wall of text, so apologies in advance

It'd be great if someone can help me figure out what's going on with my medichecks blood test results. As the thyroid panel results (bar a modest increase in ft4) are uncannily similar to a year ago I'm assuming this means my hypothyroidism is progressing at the same pace as my slowcoach gp is increasing my levothyroxine dosage. (My results from a year ago should be available under my previous post I think.)

I'm currently on 100mcg levo, increased 2.5 months ago on a trial basis to see if it would improve my symptoms. I followed the advice here to skip my dose just prior to the blood test and test first thing on an empty stomach.

TSH 3.96 mIU/L (Range: 0.27 - 4.2)

FT3 3.94 pmol/L (Range: 3.1 - 6.8)

FT4 16.900 pmol/L (Range: 12 - 22)

Thyroglobulin Antibodies 23.200 kU/L (Range: < 115)

Thyroid Peroxidase Antibodies X 87.1 kIU/L (Range: < 34)

Ferritin 81.1 ug/L (Range: 13 - 150)

Folate - Serum >19.8 ug/L (Range: > 3.89)

Vitamin B12 - Active 90.600 pmol/L (Range: 37.5 - 188)

CRP HS 0.93 mg/L (Range: < 5)

Regarding vitamins, about a year ago I was diagnosed with both a vitamin D and calcium deficiency so I've been on supplements from the gp for both (first a separate high dose vit D, then the maintenance level). As my gp is supposed to be monitoring both of these I'm going to ask him to arrange a blood test to check my levels. Neither have been checked since initiation.

I also take selenium, iron and a multivitamin without iron (Pure Encapsulations Nutrient 950E, 1 tablet a day). I'm also gluten free consistently for the past few months, not sure if that's long enough for it to have really made much of a difference.

Given I had to move mountains to get this increase (and it hasn't relieved my symptoms) I'm dreading my appointment. I still feel cold all the time, muscles are weak, need 9 hours sleep on a good day, have severe depression that won't respond to meds and god is losing weight tough. Somehow I'm slowly managing that one, but it's an uphill struggle.

I had wondered if the reason I wasn't responding to levo treatment after a year of trying was genetic I decided to get the Regenerus DIO2 gene test done.

The results were: Heterozygous variant genotype TA

Consequences of the detected genotype: - decreased ability of the enzyme to generate the active T3 hormone

So, I don't have a completely defective gene, but a half-defective/wonky one.. But I guess until I'm on enough levo the rest is a bit theoretical?

[SlowDragon Administrator]

Your GP should have retested calcium and vitamin D as soon as you finished loading dose of vitamin D

Calcium naturally rises as vitamin D improves. So it's possible you never needed the extra calcium

You perhaps need calcium, vitamin D and parathyroid hormone tested (parathyroid is expensive test so GP won't be keen)

Your slightly high TPO antibodies confirms cause of hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's.

Does your multivitamin contain iodine? Iodine is controversial. Not generally recommended by many thyroid experts for anyone with Hashimoto's

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

As you are Heterozygous DIO2 suggest you give GP copy of test results and request a referral to endocrinologist

Email Dionne at Thyroid Uk for list of recommended thyroid specialists. There are some NHS ones on list who will prescribe T3.

Clearly you need a dose increase in Levothyroxine and/or addition of small dose of T3

BTA info on patients options on getting referral and T3 trial

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

[Cominghome in reply to SlowDragon]

I think I must have had a lowish level of calcium before I started the loading dose, so when I started taking the high dose of vitamin d, so once I started the high dose it just dropped like a stone. They're really supposed to test before starting vit d I later found out.

I went to the doctor a couple of weeks into the loading dose as I was feeling distinctly dodgy and they tested my calcium. It was 2.19 mmol/L (2.2-2.6). For some weird reason they tacked it onto another blood panel I was having done five days later (feast or famine) and it had dropped further 2.12 mmol/L (2.2-2.6). So they panicked a bit and started me on supplements.

I've had a bunch of other medical stuff in the interim: arthritis diagnosed in my neck, depression worsening, digestion problems (had a colonoscopy, which was clear thankfully) and chronic sinus pain. And don't even get me started on my poor mum's health worries - never ever let a doctor tell you high vitamin b12 is fine.. So sadly the repeat bloods fell off the bottom of my list. But I'm going to get the tests redone now, better late than never!

The ridiculous thing is I got referred to an endocrinologist at the outset (my gp didn't believe I was hypothyroid so I had to ask for a second opinion) and they never thought to look at parathyroid hormone, and I definitely mentioned the calcium/vitamin d.

I've already got the list from Dionne (emailed her last week) so I'm ready armed. Although I suspect if my gp wants to do anything it will be to have another bash with levo. Especially given the Liothyronine guidelines as you say. But I'll be surprised if me trying to wangle a referral back to an endo from that list to try to get t3 isn't where we end up.

[SeasideSusie Remembering]

sarabr

Can you check your Pure Encapsulations Nutrient 950E because according to the label showing on Amazon it does contain iron at 3.4mg per serving.

amazon.co.uk/Pure-Encapsula...

It also contains iodine and this is something we shouldn't supplement without first testing, then only supplement if found to be deficient and then under the guidance of an experience practioner. As iodine used to be used to treat an overactive thyroid, it can make hypothyroidism worse, and it is particularly advised not to take it when you have Hashi's, which according to results this is what you have.

So with Hashi's, the antibodies fluctuate, an this causes fluctuations in test results and symptoms, so sometimes you will have a hypo phase, sometimes a hyper phase, and you can swing from one to the other until your thyroid is totally destroyed. You can alter dose of Levo to suit during these phases.

Are you taking your iron and your multivitamin 4 hours away from your Levo? Your multivitamin contains calcium as well as iron, and calcium needs to be taken 4 hours away from thyroid meds. It also contains magnesium, and again that should be taken 4 hours away from thyroid meds. The iron and the calcium are probably cancelling each other out, and the iron will affect the absorption of everything else anyway as it should be taken 2 hours away from any other supplements. All in all, like all multivitamins, a waste of time and money.

Your current results show that you are undermedicated. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. You should have an increase in Levo of 25mcg now, retest in 6-8 weeks, continue increasing/retesting at 6-8 week intervals until your levels are where they need to be for you to feel well.

Ferritin, Folate and Active B12 are OK.

What is your current dose of D3? Are you taking D3's important cofactors - particularly Vit K2-MK7 and a proper dose of magnesium (too little in your Multi). When supplementing, Vit D should be tested twice a year, if GP wont do it then you can do a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

It is important to know your current level to see if your prescribed maintenance dose is enough, often it isn't.

[Cominghome in reply to SeasideSusie]

Hi Susie! Probably should've put the full name, there are a slew of 950's I think. It's the Nutrient 950E Without Cu, Fe & Iodine I'm taking (amazon.co.uk/gp/product/B07.... I was careful to find one without iodine as I know it's a real no no. And I wanted to make sure I could take iron separately as I know it can affect absorption of other stuff (largely thanks to reading your posts I have to say!). I probably should switch to having everything separate but as I suspected there were lots of little deficiencies I've got this seemed like a reasonable compromise. I guess it's time to switch things up.

My dosage of vitamin D from the doctor is 800 units a day. Plus a bit more from my multivitamin. At the start I think I had either 50,000 or 70,000 units a week as a loading dose over the course of about 6 weeks.

I take my levo just before bed, at least five hours after I've eaten/last taken any other tablets. I take my calcium/vitamin d with breakfast and lunch (it's two tablets a day) and my iron with dinner. I take my multi at lunchtime too.

I'm not taking magnesium or k2 - I think I've seen you mention a combined spray for vitamin d/k2 would that be a good idea? Hadn't realised magnesium was quite that vital, I'll get researching supplements and start drinking hot cacao again

I really hope I can get him to listen about needing to get my tsh closer to/under 1. I had enough of a hard time persuading him that it still being over 2.5 wasn't a reasonable level, given my symptoms.

Edit: clarification of vit d loading dose.

[SeasideSusie Remembering in reply to Cominghome]

sarabr

OK, so it looks like your Multi isn't as bad as first thought then.

I don't know why doctors don't retest Vit D level when loading doses are finished. It's so obvious that the next dose has to be based on the new level. When you have your next test, post your result and we'll find out if your 800iu is enough or whether you need to increase it.

Timing of your supplements and Levo are fine

I'm not taking magnesium or k2 - I think I've seen you mention a combined spray for vitamin d/k2 would that be a good idea? Hadn't realised magnesium was quite that vital, I'll get researching supplements and start drinking hot cacao again

Some people like the combined spray and for Hashi's patients it's a good idea. I don't have Hashi's but personally I prefer to take as few excipients as possible where supplements are concerned and for K2-MK7 I take a liquid which contains only the K2 and olive oil, plus orange/mandarin oil for flavouring, 3 drops under the tongue

amazon.co.uk/Vitamin-K2-Liq...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

[Cominghome in reply to SeasideSusie]

Thanks so much for all this Susie. That k2 oil looks good, and it's a bit cheaper than going the spray route too. I'll probably try a topical magnesium so I can take it at bedtime, it'd be nice to get the calming benefits then if possible.

I usually take a vitamin d/calcium combined tablet along with my omega 3 supplement at breakfast (and I usually have eggs for breakfast). Then I take my second tablet with lunch. I probably average around 10-15g fat at each meal (including my omega). I've tried taking both tablets at one meal, but that amount of calcium seems to make it pretty rough on my digestion.

[SlowDragon Administrator]

Guidelines on vitamin D and importance of testing calcium and for hyper parathyroid on loading doses of vitamin D

clinox.info/clinical-suppor...

[Cominghome in reply to SlowDragon]

Thanks SlowDragon, I'll talk to my doctor about getting my calcium/vitamin d rechecked. Hopefully it's settled down, but if not I guess it time for them to investigate it properly.