Starting to feel bad again

[Starling87]

Hello everyone! (sorry for the long post)

I posted here about a year ago in regards to my test results and my GP's certainty that my labs were normal. I was trying to find that past post so I could remember all the details, but I dont know if it's been deleted since? Or if I'm being technologically silly again and am not looking in the right places. Everyone here were of great help and my doctor listened to all the research I provided, and increased my dose. Hooray!

So after my dose was increased to 125mcg, things felt much better (after the adjustment period of course)

My racing heart disappeared (it's very odd, but every time I'm having hypo symptoms, my heart races. And when I increase my levo my heart beat goes back to normal. I find this very odd as it speaks against everything I've read how it should work)

My weight finally dropped a couple of kilos, and my mood + energy increased. I felt normal again!

Lately however, I've started feeling quite tired again, my heart is racing/irregular and I'm just feeling quite hypo again. My anxiety has gone up a lot and my PCOS symptoms are kicking back in like it normally does when my thyroid is funny.

According to my July test, the numbers have gone up from 1 (where I felt happy) up to 2. You can find a detailed record of my blood tests below..

I've just written down the history I have so far of my test results.. I was diagnosed in 2011 and am currenly on 125mcg levothyroxine. Please note, all tests were taken on empty stomach with 24hrs since last levo dose, at latest 09:00am.

17th August 2020 (NHS 100mcg levothyroxine)

TSH - 3.69 (0.3 - 4.2)

T3 - N/A

T4 - 17 (12-22)

Low iron

Low vitamin D

Low folate

12th April 2021 (Medicheck, 100 mcg levothyroxine)

TSH - 2.07 (0.27-4.2)

T3 - 4.4 (3.1-6.8)

T4 - 16.7 (12-22)

High antibodies

Low folate, low vitamin D

High B12

6th July 2021 (NHS test, 100mcg levothyroxine)

TSH - 5 (0.30 - 4.2)

T3 - N/A

T4 - 14.5 (12-22)

B12 high

Good folate levels

5th October 2021 (NHS test, 100mcg levothyroxine)

TSH - 2.6 (3.10 - 6.80)

T3 - 4.7 (0.30 - 4.20)

T4 - 16.2 (12-22)

13 Oct 2021 (Medicheck, 100mcg levothyroxine)

TSH - 3.13 (0.27-4.2)

T3 - 4.5 (3.1-6.8)

T4 - 16.2 (12-22)

Better folate, low vitamin D

High B12

High Iron

High antibodies

5th Jan 2022 (Medicheck, 125mcg levothyroxine)

TSH - 1.09 (0.27-4.2)

T3 - 4.8 (3.1-6.8)

T4 - 19 (12-22)

High folate, high B12, low vitamin D

16th June 2022 (Medicheck, 125 mcg levothyroxine)

TSH - 2 (0.27-4.2)

T3 - 4 (3.1-6.8)

T4 - 17 (12-22)

Medium Folate, high b12, bad vitamin D

Vitamins I currently take:

Methylfolate,

D (The dose I take is about 8000 now, for some reason my body just wont absorb it despite being on it for years)

Selenium

Zinc

Magnesium

Fiber

Turmeric

Pro/Prebiotics

I guess, long story short.. I'm just wondering how my results history reads to someone with more experience than I?

Is it not weird that TSH has gone from 1, to 2 in 6 months? Or do I need another test from a different time of the month? Or am I just focusing too hard on the thyroid and need more exercise so my heart rate settles?

So many questions, I feel a bit lost.. I am currently a bit hesitant to speak with my GP, since Im not sure I'm emotionally stable right now to go on the whole merry-go-round of convincing GP's it's not all in my head...

For anyone who could be bothered to read my massive post, thank you, and sorry for the length. I've been gathering courage to write here again for a while and now I've done it...! 😅

Thanks again,

Have a lovely day.🧡

[SeasideSusie Remembering]

Starling 87

I posted here about a year ago in regards to my test results and my GP's certainty that my labs were normal. I was trying to find that past post so I could remember all the details, but I dont know if it's been deleted since?

Posts don't get deleted, as long as you remain a member and don't leave the community they can be found by going to your profile page (click on your avatar, that takes you to your profile page where you will see your Bio and tabs for POSTS and REPLIES. Here is your previous post:

healthunlocked.com/thyroidu...

According to my July test, the numbers have gone up from 1 (where I felt happy) up to 2.

You have Hashi's so can expect fluctuations (raised antibodies confirm Hashi's).

5th Jan 2022 (Medicheck, 125mcg levothyroxine)

TSH - 1.09 (0.27-4.2)

T3 - 4.8 (3.1-6.8)

T4 - 19 (12-22)

High folate, high B12, low vitamin D

16th June 2022 (Medicheck, 125 mcg levothyroxine)

TSH - 2 (0.27-4.2)

T3 - 4 (3.1-6.8)

T4 - 17 (12-22)

Medium Folate, high b12, bad vitamin D

So besides TSH increasing, your FT3 has reduced from 45.95% to 24.32% through range and your FT4 has reduced from 70% to 50% through range. These results show that you need to increase your Levo dose.

Can you post your actual results/ranges for your nutrient tests and say exactly what dose/brand of your supplements.

[Starling87 in reply to SeasideSusie]

Hi Susie, thank you so much for responding to my post! I appreciate it, and makes me feel less hypochondrial.

Here are the levels, and the vitamins I use.. I hope the links work ok, I thought it was best to include them just in case you thought they seemed "off" based on my descriptions.

5th Jan 2022

Folate - >20 (2.9 minimum, no top)

Vitamin D - 63 (50-200)

B12 - 234 (25.1 - 165)

Iron - 20.5 (6.6-26)

Magnesium Serum - 0.9 (06-1)

16th June 2022

Folate - 7.4 (2.9-14.5)

Vitamin D - 60 (50-200)

B12 - 141 (25.1 - 165)

Iron - 28.2 (6.6 - 26) I know this is way too high, but I havent been on a supplement for a year and it keeps being high for some reason nowadays. I dont even eat much red meat.Magnesium Serum - 0.89 (0.6-1)

Vitamins I take:

Vitamin D3 K2, I take 2x capsules with 3000 iU in each (so 6000 each day) "xSpan Labs"

amazon.co.uk/gp/product/B08...

Methylfolate 7500mcg, "Brieofood"

amazon.co.uk/gp/product/B07...

Pro and Prebiotics, "N2 Natural Nutrition"

amazon.co.uk/gp/product/B07...

Magnesium Citrate 1480g providing 444 of elemental magnesium (not sure what this means..) "Nu U Nutrition" amazon.co.uk/gp/product/B07...

Omega3 Fish Oil 1000mg "Nu U Nutrition "

amazon.co.uk/gp/product/B01...

Psyllium Husk 1400mg "Horbäack"

amazon.co.uk/gp/product/B08...

Zinc Picolinate 77mg G&G Vitamins

amazon.co.uk/gp/product/B01...

Turmeric Curcumin capsules 1420g "Turmeric Vitality"

amazon.co.uk/gp/product/B01...

[SeasideSusie Remembering in reply to Starling87]

Starling87

So your folate level has fallen for some reason and you take a pretty hefty dose so I don't understand that. Did you leave it off at all prior to the latest test?

What made you take a high dose methylfolate supplement rather than a B Complex which should keep all B vitamins balanced?

Folate is recommended to be at least half way through range so with that range it would be around 18 plus.

For Vit D I would look at changing your brand.

Do you take it with some fat? D3 is fat soluble so must have fat to be absorbed, so as yours is a capsule and contains no fat you'd need to take it with the fattiest meal of the day, or with something like cheese, full fat yogurt, something with butter on, etc.

Some people do OK with an oral spray and this is absorbed through the mucous membranes in the oral cavity so bypasses the stomach. I don't like the oral sprays because they contain quite a few excipients and I try to avoid them.

My choice is Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly.

You would need to take a separate K2 with a D3 only supplement and my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

Vitabay and Vegavero are either tablets or capsules.

Vitabay does do an oil based liquid.

Vitamaze is an oil based liquid.

With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.

They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.

90-100mcg K2-MK7 is enough for up to 10,000iu D3.

If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form

natureprovides.com/products...

It may also be available on Amazon.

One member recently gave excellent feedback on this particular product here:

Here is what she said (also read the following replies):

healthunlocked.com/thyroidu...

With your current level, to reach the level recommended by the Vit D Council, Vit D Society and Grassroots Health - which is 100-150nmol/L with a recent blog post on Grassroots Health recommending at least 125nmol/L) then you'd be looking at taking 4,000iu D3 daily. Maybe try that, retest after 3 months to see if it makes a difference.

If all you want to test is Vit D then the cheapest test is a home dried blood spot fingerprick test from an NHS lab which offers this to the general public for £29:

vitamindtest.org.uk/

Magnesium Citrate 1480g providing 444 of elemental magnesium (not sure what this means..) "Nu U Nutrition"

Elemental magnesium is the amount of actual magnesium that the supplement provides. Your supplement gives 1,480mg of magnesium citrate, so that is magnesium and citric acid, and the actual amount of "elemental" magnesium it provides from the recommended serving of 2 capsules is 444mg. That is a good amount, the amount of elemental magnesium recommended is usually 350-450mg.

The only thing I would say about your zinc is did you test to know you need to supplement? Zinc and copper should be balanced, we hypos tend to have one high and the other low, and if we don't test we might be supplementing with the wrong one.

Are you supplementing with B12?

It might be worth keeping an eye on your iron, maybe test a couple of times a year, check to see if it's still rising.

Was ferritin tested? Seems strange that you have just serum iron as that is usually part of an iron panel, ferritin is the usual test.

[Starling87 in reply to SeasideSusie]

Thanks, am gonna go hunting for a new vitamin D option now based on what you've linked and written..

It seems so obvious to me now, why havent I just tried a different brand when my test results repeatedly are not improving...!? I will also start taking it with a babybel cheese or something to see if it helps it along.

Zinc, I must admit, was a spur of the moment addition based on an article saying that Hashi sufferers might feel better with a zinc and a selenium supplement. If you advise against it, I would take your word for it. I didnt even know it could be tested...!

Am not supplementing with B12 or Complex at the moment since all my tests have shown that I have lots of it in my system already. Methylfolate is because my doctors tried to prescribe me folic acid for a very low folate result a year ago or so. But that failed, and privately bought methylfolate succeeded.

I then read some studies suggesting that it could be beneficial for people with low moods to take a daily 7500 dose of it every day, so I thought I'd give it a try. It's certainly kept my folate up at least...!

I stop taking supplements about 1.5 week before the test, since I heard that could skew the results?

Ferritin was indeed tested! I completely forgot to add that:

13th April 2021 - 81 (13-150)

11th Oct 2021 - 84 (13-150)

5th Jan 2022 - 110 (13-150)

16th June 2022 - 71 (13-150)

I used to take an iron supplement up until summer 2021 and then someone from this community informed me it wasnt the best idea unless I specifically had an issue. So I stopped, which I think was wise.. I had a full health screening with medicheck and it flagged a liver issue around the same time which I suspect had to do with the iron supplement. Luckily that liver value is back to "green" again.

[SlowDragon Administrator]

Do you always get same brand levothyroxine at each prescription

Suggest you request small dose increase in levothyroxine ….initially adding 12.5mcg 4 days (cutting 25mcg tablet in half)

Retest in 6-8 weeks

Approx how much do you weigh in kilo

Are you on strictly gluten free diet or dairy free diet

[Starling87 in reply to SlowDragon]

I was always on the same one (I think it was mercurypharma) until the last prescription when they suddenly gave me Teva. I've heard others mentioning it in the past and not liking it so I was hoping I'd be an exception..

Not sure I have enough 25s saved up spare, but I could give it a go. I normally get 3 months worth of dose in one go, so hopefully they wont be suspicious if I run out sooner this time.

I weigh 70kg. Before the pandemic I'd been 67kg for about 10 years. I went up to 72kg before I got the dose increase from 100 to 125.

Not on any gluten free or dairy free diet, although I try to have healther brown carbs instead of pure white ones. Have noticed my stomach bloats whenever I have 100% white flour food and rice gives me a massive sugar crash.

[SlowDragon Administrator in reply to Starling87]

Request new prescription and note added to all future prescriptions

“No Teva”

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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).

Retest in 6-8 weeks

If not had coeliac blood test get that done via GP (while eating high levels of gluten)

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

It’s ALWAYS worth trying strictly gluten free diet

[Starling87 in reply to SlowDragon]

Good news, thanks to you and Seaside Susie I managed to plead my case very well with a new GP and I managed to up my dose by 12.5..!

At first he started with "I see here you are actually in range and completely normal....." but then he seemed completely on board when I told him I felt much better with a TSH of 1 and better T4/T3. Actually listened! There is hope yet for us😅

And he said he wanted to retest me in 8 weeks and then see how the levels look. I feel like celebrating, I've never had GP tell me that they're gonna bother do a follow-up...! And no ego what so ever.

And I'm gonna do a gluten test as well, thank you for all your help and suggestions 🌹

[SlowDragon Administrator in reply to Starling87]

Great news

Help list of references re low TSH

healthunlocked.com/thyroidu...