Update….one year of enlightenment : Hi lovely... - Thyroid UK

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Update….one year of enlightenment

Gardeningaddict profile image
8 Replies

Hi lovely people.

I last posted in February, when I was hoping to increase to 75mcg.

Long story short, GP agreed to the increase in March. I had been testing with MMH and watched my TSH creep up and my FT3 & FT4 decrease. Without private testing, I’d still be wading through treacle on 50mcg!

So after 3 months on 75mcg, in June, GP checked my TSH, which was down to 0.44. Obviously, FT3/4 weren’t tested.

I was feeling a little better, more energy than before, so knuckled down to the summer and my garden 👩‍🌾

I waited until early September and again did MMH bloods. I was starting to feel very tired and constipated.

TSH 1.02 (0.27-4.2)

FT4. 13. (12-22). FT 3.9 (3.1-6.8)

I decided to ask GP for the next increase to 100mcg because FT3/4 levels only marginally increased.

Again she was surprisingly compliant. I put my case and told her I had been monitoring my FT3/4 because they don’t. She took my word for the results.

As many have said on here, it helps to say you’d like a ‘trial’ at the next dose. I told her that I didn’t desire to be over medicated, just to get to the correct dose for me. I also asked to have vitamins etc. re-tested. She said to check TSH after 3 months.

I was pleasantly surprised that she wrote up the telephone consultation in detail and set out the plan.

So yesterday, after 10 days on 100mcg, I toddled off to get these done.

It’s a good job I thought ahead. I booked an 8.30am appointment and didn’t take my meds because when they handed me the form, sure enough, as well as the vitamins, she’d asked for a TSH and FT4!

Results: TSH 0.30 (0.35-4.94) FT4 13.4 (9.01-19.05) 43%

Vitamin D 84.9 (50-150)

Ferritin 52 (20-204)

Folate 3.7 (3.1-20.5)

B12 233 (187-883).

I was shocked that my TSH had dropped so quickly on the increased dose but it means nothing as it was done far too quickly. All the results have been reviewed and luckily, the GP made a note on TSH ‘result fine for this patient’ even though under range!

I’m please that my Vit D has improved and will continue to supplement.

I’m now going to start supplementing B12 and a B complex.

I’ve already felt an improvement in energy levels and honestly feel like I’m getting somewhere now.

It’s a long, slow battle but worth sticking with it. I know this is a long post but wanted to post when things go right because all too often, for many people, they don’t. We all need some positive encouragement instead of the negative.

Many, many thanks to all for being my go-to wealth of knowledge and giving me so much information to take control of my own health and treatment.

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Gardeningaddict
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8 Replies
TiggerMe profile image
TiggerMeAmbassador

Excellent news, well done you! 🤗 Always good to hear a success story

Certainly adding some B12 and a B complex for folate is going to make quite a big difference as they are both horribly low and I'd suggest an increase in your Vit D dose too as we are heading for the darker months and ideally 100-150 is the aim

Gardeningaddict profile image
Gardeningaddict in reply toTiggerMe

Thanks Tigger, will do that.

TiggerMe profile image
TiggerMeAmbassador in reply toGardeningaddict

This is handy for working out how much you need... grassrootshealth.net/projec...

SlowDragon profile image
SlowDragonAdministrator

Very well done on negotiating next increase in Levo to 100mcg

Which brand are you taking

Your B12 and folate are woefully inadequate

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Is your hypothyroidism autoimmune?

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Also look at increasing iron rich foods to increase your ferritin levels

Gardeningaddict profile image
Gardeningaddict in reply toSlowDragon

Thanks SlowDragon.

Regarding brand. I started 50mcg on Mercury (2x25) and was fine on it. When I went up to 75mcg, they dispensed Teva (new dose, new brand 🤯, I know, not ideal). Within a week, I was getting bad abdominal cramps but then they eased off and are now just intermittent. Because I had a month left of the 75’s, GP prescribed 25’s go with. I already had a few Teva 25’s so used them with this last box of 75. The new script was 4 boxes of Mercury 25mcg, so will take 4 x 25mcg and then get a new script for 100mcg. I spoke to the pharmacist who advised me to open the package in the chemist and they would do their best to swap it if it’s Teva. I thought that was pretty decent of her. GP said she can’t specify brand. I’m not going to argue with her as she’d been quite accommodating with the increase. It’ll be interesting to see if the cramps disappear back on Mercury.

I’ve started B12 sub lingual spray (4 sprays) today. I have Ingennus B complex and will follow your advice and start in a weeks time.

Yes, autoimmune Hashimoto’s. Strongly positive TPO (no numbers given) and Antithyroid Microsomal Ab 1971 (no range given).

Thanks for the links.

SlowDragon profile image
SlowDragonAdministrator in reply toGardeningaddict

Many people find Levothyroxine brands are not interchangeable.

Many, many members have note added saying “no Teva brand”

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

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

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg and 50mcg tablets became available Sept 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

Government guidelines for GP in support of patients 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.

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

Cornwaller profile image
Cornwaller

Great detail. I'm not medically qualified but below are some thoughts which may be helpful to you going forward.

Your b12 result at 233 is really low. Are you vegetarian or vegan, or do you take PPIs or metformin?

The reason I ask is that the above lower b12 as a side effect and would explain why you are or are very close to becoming deficient in b12.

Alternatively b12 can be autoimmune and is a common condition to have alongside hypothyroidism.

Unfortunately you have a dilemma. If you supplement orally to try and raise your serum level to 500+ then you may have difficulty getting a diagnosis of b12 deficiency with your GP. There are anti body tests but they are around 24% accurate and a negative test is not a disconfirmation. You could ask your doctor for the IFab test. They might retort that your not deficient; however, your levels are in the possibly b12 deficient zone and very close to the likely deficient of <200. Additionally medicine is supposed to be proactive!

Have you any b12 symptoms? See B12d.org or PA website. The healthunlocked.com PA website is excellent. Strangely, or perhaps not, b12 and hypothyroidism symptoms are quite similar.

Many authorities recommend resolving b12 issues before folate as there is a risk that folate supplementation can exacerbate b12 deficiency damage if folate is taken ahead of b12. Also not to use folic acid.

Best wishes

Britomartis29 profile image
Britomartis29

Wonderful news! Thanks for sharing it—-so nice to hear this. Not easy to get through to them; you’ve done a minor miracle there. 👏👏👏

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