Log in
Thyroid UK
96,661 members110,481 posts

New results and an update - Vit D, early Lyme Disease and what looks like vitiligo

Doc called this morning to check in (looks like throwing my toys out of the pram made a big difference!).

Results came back and she said I'm severely Vit D deficient (result 22, didn't get the range but "severe" is good enough for me) and tested positive for "early" Lyme Disease.

The D3 I bought is actually a little stronger than the one she was going to prescribe so she was happy for me to take that instead. Didn't get into the whole K2 + Magnesium thing as I didn't want to confuse her 😁. Hopefully correcting that will ease off my aches and pains.

Lyme wise she said it might be a red herring with regards to my symptoms, as it looks to have started in the last few weeks. She's sending through a prescription for antibiotics to try and nip it in the bud and I need to book a second blood test to check for another Lyme antibody, to see if it's "converted"?.

Vit D wise she said to take the high strength for 12 weeks then move down to an over the counter but...

A little sun on my skin looks to have revealed Vitiligo (classic pattern around mouth and random spots elsewhere) which is just fabulous. Looks like I'll have to be slathered in factor 30 for the rest of forever, so had better stay on a high Vit D dose. Being ill is expensive.

On the plus side my tiny 25mcg levo dose has made a big difference in just 2 weeks. The swelling on my hands and face has come down, I'm sleeping much better and the pins and needles have gone! Still exhausted all the time but *points upwards* that isn't surprising. Perhaps hubs will accept my tiredness isn't "what everyone feels" now.

Edit: Awww, he just rang from work all worried about me.

29 Replies
oldestnewest

Hi scarlet,

Aw I'm so glad to hear your doctor is more on the ball now. Surprised he tested your vitamin D I had to go private. So that's brill :) How strange my vit D was 22 also! Haha. I started my D3 just under a week ago.... Not sure I'm seeing any Improvments yet though. I'm doing 3000iu daily for 14 weeks (300,000 loading dose) then 1000iu for 4 weeks and gonna retest.

Amazing news about your symptoms and levo too :D So glad to hear your moving in the right direction. Fingers crossed! I don't have any idea about Lyme disease so hope alls okay with that.

Take care, it was lovely to hear how ur getting on and seems pretty positive.

Did you get tested for Hashimoto's?

Diane x

1 like
Reply

I know! When she said the figure I thought hang on a min and went back and checked yours 😁. Was surprised she tested Vit D too. That and the Lyme were probably just differential for the fibromyalgia she suspected.

Sounds like a plan. Have 14 weeks worth of 5000iu D3 so will prob do the same and pick up some 1000 or so when that runs out 👍.

Not sure if thyroid antibodies were on the immune panel. Didn't want to drag out the call as all the computers were all down at the surgery, so she was working off handwritten notes and a bit stressed. Know they're checking antibodies on my thyroid test in August though, so will find out eventually.

I don't know a lot about Lyme either to be honest (even had to edit my spelling of it lol). Do know I'm very lucky it was picked up early though, as a LOT of people get false negatives at this stage. Hopefully the antibiotics will do the job as it can persist or come back. Don't even know if I'm getting symptoms from it as they're very similar to vit D deficiency and hypothyroid. Can only hope this will be a little lesson to the GPs at my surgery, not to fob people off when they have these kind of symptoms. At least they should be on the ball for Lyme Disease in the area now.

Fingers crossed they up your levo soon as your thyroid results were SO much further out of whack than mine. Hope there's more improvement for you soon!

Scarlet x

1 like
Reply

So strange isn't it haha. To be fair having hashimoto's doesn't change the medical treatment so no rush really. Would be beneficial though if you wanted to try gluten free etc but August is just around the corner :)

Exactly! I like to think my condition has opened my GPs eyes a little and hopefully in the future she won't be so quick to rush to an anxiety diagnosis and think about other possibilities too.

I have blood tests on Wednesday so I'm hoping for an increase again. Feel like I need it, so hopefully the doc agrees. I'm lucky that she's testing every four weeks at the moment. My sister is recently diagnosed too and she's not getting bloods for another 3 months after initial diagnosis which I think is way too long.

Here's to lots more Improvments 🤞 and good luck with your antibiotics let's hope they do the trick!

Diane x

1 like
Reply

Scarlet

Have 14 weeks worth of 5000iu D3 so will prob do the same and pick up some 1000 or so when that runs out

Is that 5000iu daily for 14 weeks or 5000iu weekly for 14 weeks?

Loading doses should total 300,000iu over a number of weeks - see cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Once loading doses are finished you should retest and see if you've reached the level recommended by the Vit D Council, the Vit D Society and Grassroots Health which is 100-150nmol/L. Then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

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.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and 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

naturalnews.com/046401_magn...

Check out the other cofactors too.

3 likes
Reply

Thank you so much for all the information SeasideSusie ☺. Yep that's 5000iu daily (with K2 and magnesium and a fat rich, evening meal). Do you think I should move down to a lower dose (say 2 per week) as soon as I reach the 300,000? That'd be *sound of gears turning* after 8 1/2 weeks.

Thank you!

Scarlet

Reply

Scarlet

I'm surprised your GP has precribed that amount for 14 weeks, that's 490,000iu, I think that may possibly take your level too high, you don't want to reach toxicity level. If I were you, I'd give it the 8 1/2 weeks ( :) ) and either ask your GP to retest - you could explain that you know the loading doses should be 300,000 - or do the test with City Assays, it's just a fingerprick blood spot test, very easy, it costs £29.

When you get around to buying your own D3, then if you don't have Hashi's look at Doctor's Best D3 softgels - just D3 and extra virgin olive oil in a small softgel. Very reasonably priced (look at Dolphin Fitness website for best price) and good quality with no unwanted ingredients. If it turns out you have Hashi's then an oral spray is best, eg BetterYou.

Reply

Excellent advice, thank you. Think I know what happened. The softgel ones I bought in expectation of deficiency (which she agreed I could now take) are stronger than the ones she was about to prescribe, so she probably just didn't think to correct the duration for that in the moment.

Thank you, I'll do that. Will mention it if I see her beforehand but otherwise ring back to get my levels tested at 8 1/2 weeks. Will keep the spray in mind if it turns out to be Hashi's too.

Thanks again ☺

Scarlet

1 like
Reply

Hello SS, very helpful info as always. If you have high antibodies does that mean you have Hashimoto? In that case I must have but my GP didn’t give me that label he just said my antibodies were 238 or similar & not to worry! I take vitamin D liquid (nutri advanced) & it contains K. Am I better off buying a spray to be used orally (or on skin?) thanks a lot

P x

Reply

Polly91

How are the D3/K2 drops taken? If sublingual (under the tongue) then that is fine as it bypasses the stomach. If swallowed (or in water and drunk) then they go to the stomach. Because Hashi's can affect absorption it's recommended to use a sublingual method or oral spray to bypass the stomach.

With antibody level of 238 you have Hashi's. Doctors generally don't use the term Hashimoto's, they tend to use Autoimmune Thyroid Disease.

1 like
Reply

Thank you SeasideSusie

To be honest the bottle doesn't say how to administer so I just put on my tongue but perhaps I should put under my tongue- will it just get absorbed under the tongue? Or do I have to leave it there for a while before I gulp?!

I think I will order some oral spray

Thank you x

Reply

Polly91

Try putting them under your tongue and just leave them there, they should be absorbed through the membranes there.

1 like
Reply

Will do x

Reply

Make sure you get vitamin B12 and folate tested

Plus ferritin too

25mcg is only half the standard starter dose of Levothyroxine. Likely your low vitamins were lowering TSH, masking your need for Levothyroxine

beta.nhs.uk/medicines/levot...

Bloods should be retested after 6-8 weeks.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

1 like
Reply

Thank you ☺. My B12, folate and ferritin were checked on my first test thankfully. All low in range so will need supplementing. Going to take it slow and add them in gradually so I'll know the culprit if I have any reactions.

Really interesting point about low vits possibly keeping my TSH down. It did seem very low considering how many years I've been symptomatic. Not sure what to expect on the next thyroid test (late August). If I have Hashimoto's it could be almost anything. Have scheduled the blood test for early morning before levo dose so should be reasonably accurate.

My tiny 25mcg prescription will run out in 2 weeks, long before the test, so I'm curious to see if she'll put me on a more sensible dose then or just renew at 25.

A formal diagnosis and prescription charge exemption wouldn't go amiss either with my low earnings, but I won't hold my breath lol.

Reply

Hi Scarlet, I see you are making progress and I hope you will continue. Your doctor should raise your levo every few weeks until your FT3 and FT4 are in the upper range. Just a thought about your vitiligo. These are all autoimmune conditions and often what you eat that disturbs your system sets off your immune system and as it goes on the attack. Gluten looks like thyroid tissue, I don't know what looks like pigment or dermis......but this is how the attacks work. While your immune response is trying to get rid of gluten proteins, it also attacks thyroid tissue.

This all starts in the gut and you know about leaky gut. While this happens, you are not getting the nutrients you need because your stomach is inflamed and not breaking down the nutrients. B12 is one of the first to go I think but minerals are difficult so they are probably up there as well. The antibiotics are going to make it difficult because they kill off the good flora in the gut. It is very involved as you can tell. Some people have gone on a ketogenic diet which takes a lot of motivation but you can get your body to heal if you turn off the genes which have been turned ON. It's all about what you eat.

3 likes
Reply

Thank you ☺. Important advice for all us autoimmune peeps!

Have been holding off on giving up gluten till they'd finished testing me for Celiac (presumably negative as she didn't mention it on the call) but am definitely giving it up now. Going to cut out soya too as had a very weird reaction to a heavy, gluten + soya day while preparing for my autoimmune tests.

That's a really good point about the antibiotics. Will likely be on them for three weeks too. Thank you for mentioning it as it I hadn't thought about that. Will make sure to get some pro-biotics in 👍.

Will read up on that ketogenic diet too. I cook all my meals from scratch already, so it shouldn't be too tricky to stay on track once I know what I'm doing, diet wise.

Thank you again

Reply

You're impressive, Scarlet. There is a new documentary on Netflix call The Magic Pill about the diet......great for Alzheimers as well as Autism and you will see the patients and their results. Do you use a website or some expert you like? I would definitely recommend John Bergman on you tube, brilliant man. I've posted summaries here after watching summits like The Thyroid Secret by Izabella Wentz; The Broken Brain, Mark Hyland and Tom O'Bryan, the Longevity Series was also great. You could also look into SIBO as it is usually an off shoot of other gastric problems. Celiac may be different from gluten and leaky gut. Gluten causes the junction in the gut lining to open and this allows undigested proteins to release. Some people are only affected this way for a few hours but some are affected for a few days even weeks after eating gluten. Celiac is an autoimmune condition of its own.

It's good to find out the latest research as doctors don't usually know about this and alternative healing but there is a huge explosion of knowledge now and also an emerging influx of practitioners.

Scarlet, I am pushing because if you are relatively new with these conditions I'm hoping you can reverse it all. Some of us have learned too little too late but it's still worthwhile to make some lifestyle changes.

3 likes
Reply

Please, push away ☺ I'm very lucky to have caught things early. The Lyme result particularly, as it seems like a lot of people would have tested negative at this stage, if they could get themselves tested at all.

Will definitely look into the sources you've mentioned. Reading STTM II at the moment, which is pointing me in useful directions too.

The cooking from scratch thing isn't too impressive once you know my partner does the cleaning lol. He has the tough job, so no excuse not to cook properly 😁.

1 like
Reply

It helps to have a partner who will support your efforts. Keto is high fat low carb which is healthier for most people.

I use STTM all the time and probably my first reading material. We have to get beyond this one condition (hypothyroid) and move on to the big picture of autoimmunity. I think you are going to do very well. Keep posting questions.

1 like
Reply

What is STTM?

I’m still struggling with a diagnosis. Still have prickly buzzing sensations in limbs & hands & feet & still have hot neck. Now head feels pressurised & sometimes excruciating headaches.

I have cut carbs down & limited/excluded gluten over last 2 weeks. Can’t say I feel any better but I’m losing weight I can’t afford to lose.

I wish I could get better

X

Reply

If you post this as a new thread people will see it and hopefully be able to help. X

1 like
Reply

STTM - Stop the Thyroid Madness. Website and books by the same name !

2 likes
Reply

Hi Polly, as Marz said Stop the Thyroid Madness has been around for many years and has been helping all of us with thyroid problems. This is one of the pages but you will notice the headings along the top. stopthethyroidmadness.com/r...

Go to Adrenals and read some of the articles. When your thyroid is low, your adrenals have to produce more cortisol. I think this causes your extremities to get ready for action. that's called "fight or flight".

1 like
Reply

Ok thank you Heloise and Marz

I’ve spent the last month exploring Lymes (spending a fortune - have sent bloods off to Germany awaiting results ) as 3 doctors said thyroid cannot be the cause of my hot stiff neck pains & tingling etc but still no answers so I’m back to considering whether it was thyroid all along? Or both? Or some other hormone deficiency ?

I will check out this website (I thought it was a book!)

Thank you so much

X

Reply

They also have hard copy books. Izabella Wentz has some great books and expands on autoimmunity issues. Suzy Cohen is a pharmacist as well and has developed some supplements. I haven't personally tried them but she has the condition herself.

Often adrenal issues are the first sign of problems because "stress" is often the trigger. Stress can come in different forms and food can be one of them, chemicals and emotional stress are involved. Your adrenal glands are so important. They produce several steroids, progesterone and other sex hormones and cortisol and they use cholesterol to do it. They are asked to do a lot.

Reply

You guys are all so knowledgable- thank you for educating me.

The thing is Heloise I wasn't particularly stressed when all this started (I was the previous 2 years as I lost my dear dad last year & the year before my son was diagnosed with a tumour- thankfully he is fine now). This year had been a bit stressful (drug addict brother who gives my mum a very hard time) but compared with previous years it was great -up until all this happened mid April. I was fitter than I had ever been & I was happy with work and life in general.

So I can't understand why the adrenals would start playing up? I definitely was under medicated with thyroid and menopausal dabbled in HRT patches in February to April - so I guess you could be right??

I just want to get better and I'm so grateful to all the kind people who give up their time on this group to help others.

I work at a food bank as a volunteer but when I'm better I want to do something else to help others.

X

Reply

To me, it all sounds very stressful.....very, very stressful. All these lead to the edge of a cliff and then menopause. I personally feel menopause is a big stresser but not everyone may agree. On top of that many foods contain estrogen and pesticides do also. Estrogen dominance is a real problem for your thyroid.

It would be interesting to see a saliva test for cortisol if you can afford it. You can read up on STTM under the lab tests to see what that is about if you don't know.

I wish doctors knew more about hormones. Dr. Bergman explains it so well but you have to take notes to follow since he packs so much information. I may have given you the link for his thyroid/adrenal talk. He doesn't make recommendations for treatment except for how to get healthy. Your adrenals will try to compensate in any way they can but how long can they keep it up. Learning how you can support these systems so you can heal is the question.

1 like
Reply

1 like
Reply

After a Lyme antibiotic it kills your bodies natural fighting antibodies so the follow up test means nothing. Get to someone knowledgeable.

Reply

You may also like...