Daughters results after altering her dose.

[lucylocks]

Hi

I posted 18 days ago regarding my daughter who had lost three stone in weight but had still been taking her usual dose of 150mcg. levo.

She was having really bad sweating at night so we thought she might be on too much levo. now with the weight loss. She reduced to 100mcg. which she took for ten days. I posted here and was advised it was too much of a reduction in one go, so was advised to take 125mcg.

She took 125mcg. for two weeks but was still have bad night sweats so reduced to 100mcg. for two weeks. Still the sweating was bad so stopped all levo. for four days, then restarted on the 100mcg. which she took for two days.

I had ordered a thyroid blood test for my husband, which he never got round to using, and it was due to expire in a few days, as my daughter was feeling really anxious and depressed she decided to use the test.

We obviously knew her thyroid levels would be messed up but she wanted to see what her ferritin was doing as she always has low iron.

So she had restarted her 100mcg. for two days but then did not take it for 36 hours before doing the blood test, also as she is taking biotin and only decided to do the test last minute she did not stop it before the test.

Her results are,

TSH 7.35 range 0.27 - 4.2

FT4 11.9 range 12 - 22

FT3 3.3 range 3.1 - 6.8

Thyroglobulin AB 17.5 range 0 - 115

Peroxidase AB <9 range 0 - 34

Ferritin 29 range 30 - 400

Folate 18.1 range >2.9

Vitamin Active B12 256 range 25.1 - 165

Vitamin D 120 range 50 - 120

CRP HS 2.2 range 0 - 5

She takes all the usual supplements, obviously she can reduced her Vitamin B12 dose as it is well over range.

She cannot take the ferrous fumarate prescribed by her doctor as it makes her vomit, so she takes Boots gentle iron 20 mg twice a day, which is obviously not strong enough as her ferritin is below range.

I know her thyroid levels are not giving a true picture but I just wondered if anyone would like to offer any advice.

Many thanks.

[Charlie-Farley]

Hi Lucylocks

oh my goodness! Firstly congratulate her on losing 3 stone, but yes her old dose if the rule follows will be too much.

It usually takes 6 - 8 weeks for a dose to settle down. All the yo-yo-ing will have played havoc with her levels re thyroid hormones.

As you note B12 and folate look high out of range. Might she be over supplementing? Not taking any multivitamins? (Better not to, they tend to be less effective).   SlowDragon and   SeasideSusie advice re vitamins is legend- helped me tremendously at start of my journey. I’ve tagged them in.

But ferritin is so low! That should prompt a full iron panel.

Taking everything into consideration , no wonder she is not feeling well. The thyroid hormones now being in a state of flux and iron deficient.

What dose is she on now? Whatever it is tell her not to rush to change again- advice when changing dose up or down is low and slow.

What did she weigh before losing 3 stones.

And what does she weigh now. This will be useful to know.

When she was on 150ug of Levothyroxine did she ever experience residual symptoms?

[lucylocks in reply to Charlie-Farley]

Hi many thanks for your reply.

Yes her B12 is high due to supplementing, she will now stop it.

SeasideSusie has just pointed out, that ferritn levels for women start at 15 (test was sent in in my husbands name) so although ferritin is low, it is now as low as we thought.

I see from your reply to SeasideSusie below, that you seen from my previous post my daughters weight. We worked out she should now be taking approx, 100mcg. levo.

She will stick to this to 100mcg. now and retest in 6 - 8 weeks.

[SeasideSusie Remembering]

lucylock

It is high dose biotin (>5mg) that affects blood tests but it is advised to stop all biotin for 72 hours before a test although it's half life is said to be 2 hours so a minimum of 8 hours should be enough to minimise any interference. So some of the results may be OK but testing really wasn't done under ideal circumstances.

I think you know that the thyroid results will be worthless, she really needs to be on a stable, unchanging dose for 6-8 weeks for thyroid results to be reliable, so it's not worth commenting on these thyroid results. When she does thyroid tests in future the last dose of Levo should be 24 hours before the test, 36 hours is far too long and will give a false low result. Timing of last dose is important to give an accurate measure of normal amount of circulating hormone.

Ferritin 29 range 30 - 400

Did she stop iron tablets for a few days before testing, ideally 7 days, and was test done after a 12 hour fast?

she takes Boots gentle iron 20 mg twice a day,

Does she take each iron tablet with some Vit C (ideally 1000mg Vit C tablet/powder)?

It is said that iron is better absorbed when taken on alternate days rather than every day.

Does she take her iron tablets 4 hours away from her thyroid medication (and 2 hours away from any other supplements/medication)?

Vitamin Active B12 256 range 25.1 - 165

It would be better if she stopped the B12 altogether as it's now just wasting money and she could just take a B Complex which will maintain her folate level and give a decent B12 level.

Vit D is OK. Presumably she's taking D3 and it's cofactors magnesium and Vit K2-MK7?

CRP is an inflammation marker and the lower the better.

[Charlie-Farley in reply to SeasideSusie]

Hi SeasideSusie

I did a back calculation based on info from previous post. Lucy’s daughter now weighs 10stone 3 lbs having lost 3 stone

150ug would would equate to :

13 st3lbs ->~83 Kg

150/83 =1.8ug Kg slightly higher than guidelines but this could be a combination of reasons, everyone is different.

 lucylocks does your daughter always have the same brand of Levothyroxine? If they are swapping her about this could affect absorption adding another variable into an already complicated situation.

Please might I suggest (if it hasn’t) you fix the brand to reduce the variables. Not all types of levo will necessarily give a person the same amount of bioavailability. NICE guidelines are clear this is acceptable especially if a person has a food intolerance or seems to ‘do better’ on a specific brand.

Also going back and having a chat to see what other symptoms may have /or not been lurking about when on 150ug 🤔 was she feeling totally well?

[lucylocks in reply to Charlie-Farley]

My daughter never gets the same brand of levo. she has told the pharmacist she must have the same brand, but they don't seem to listen. I will go with her when her meds. are due next and insist she gets the same brand.

When she was taking 150mcg. levo,. she was not totally well, she still had fatigue and irritability but we put it down to her low iron and female hormones at that time of month.

Thanks again for your advice.

[Charlie-Farley in reply to lucylocks]

Hi lucylocks

At our surgery we have a meds management team - get them to fix the brand their end - if you have one at yours deal directly with them or your surgery’s equivalent - there should be no need for doctor to get involved with ‘minor’ details (for them) albeit significant for us hypos. I also had a note put on my records at dispensary and yes they have stuffed up a few times but I always check at the counter so I can hand them back.😉

The irritability could have been down to imbalances in the vitamins and minerals, some too high some too low, so getting balance right for optimal conversion of levo is essential. What we take isn’t necessarily what the body gets and that can be down to variations in brand too. It’s a juggling act but the fewer variables/fewer balls we have in the air the easier it is to work through the remainder.

It’s really important to note she wasn’t feeling fab on the 150ug because you are not even starting from a settled dose she felt well on. So go slow, look carefully at blood results, but take heed of symptoms. I have written a post on submitting test results to back up request to up my medication all my post are knocking about in my profile and my bio is written as a case study. Don’t reduce prescription with doctor- it’s sometimes not as easy to get it put up again. A few spare pills are always useful, especially if pharmacy stuffs up or there is a delay on an order.

[lucylocks in reply to Charlie-Farley]

Many thanks again.

Not sure if her surgery have a meds, management team but we will speak someone, also the pharmacy about getting the same brand,

Yes she will stay on 100mcg. now and retest in 6 - 8 weeks.

I will have a look in your post and bio, thank you.

[lucylocks in reply to SeasideSusie]

Thank you for your reply.

No she did not stop her iron before test.

She takes her iron with orange fruit juice for the vitamin C, but will tell her to take with a tablet or powder.

She will now stop Vitamin B12. She has tried several different B complex before and they always make her nauseous, do you know of one that is gentle on the stomach?

She does take Vit D with magnesium but cannot take Vit K2 because she is on a low dose aspirin.

[SeasideSusie Remembering in reply to lucylocks]

She has tried several different B complex before and they always make her nauseous, do you know of one that is gentle on the stomach?

Which ones has she tried? Could it be excipients or one of the actual B vitamins that's making her nauseous?

[lucylocks in reply to SeasideSusie]

I thinks she has tried Nutri B complex and Thorne, amongst others, I think it is the smell initially that turns her stomach, then when she takes it. it makes the feeling worse.

[SeasideSusie Remembering]

lucylocks

I had ordered a thyroid blood test for my husband, which he never got round to using, and it was due to expire in a few days, as my daughter was feeling really anxious and depressed she decided to use the test.

I just want to point out that as this test was sent to your husband then it will be linked to your husband's account with the testing company. Presumably you didn't tell them that the test has been done by your daughter and not your husband. The ferritin range is a male range as it is your husband's test, for females it would be 13-150 if this is Medichecks, which I think it probably is and the testing company is either INUVI or The Doctor's Laboratory.

[lucylocks in reply to SeasideSusie]

Thank you,

yes it was Medichecks.

Thank you for pointing the ranges out.

Her ferritin is not as bad as we thought then, but it is still low in range.

Hopefully her level will improve when taking iron with Vit C supplement.

[Lalatoot]

Lucy when I was losing weight and having night sweats it was a sign of under medication.

I was truly hyper, had RAI and became hypothyroid. I can say from experience that the symptoms of hyper/overmedication and the symptoms of hypo/undermedication can be the same. Things are not so clearcut as in the lists you read on line where hyper and hypo symptoms are the opposite of each other. My resting heartrate also increases when I am undermedicated for example.

So it could be that your daughter was undermedicated. or something affected her absorption so hormone levels had dropped, all along. She needs to get back on a stable dose for 6 to 8 weeks and then retest. It will be a rocky few months for her unfortunately till she hopefully gets back on track.

[lucylocks in reply to Lalatoot]

Thank you for reply.

Yes it is difficult to know what's going on when symptoms over lap.

She will stay on a stable dose now and retest in 6 - 8 weeks.

[SlowDragon Administrator]

Which brand on Levo suits her best

ALWAYS get same brand at each prescription

Suggest she take either 125mcg every day (possibly too much)

Or 112mcg everyday

Wait 6-8 weeks and retest

Meanwhile working on improving terrible ferritin

Just taking daily vitamin B complex….doesn’t need separate B12

How much vitamin D is she currently taking

[lucylocks in reply to SlowDragon]

Thank you for your reply.

They always give her a different brand even though she has told them she needs to be on the same brand. I will go with her when her meds. are next due and insist they give her the same brand every time.

She has tried several different B complex brands but they always make her feel nauseous, do you know of brand that is gentle of the stomach?

She takes 3000iu Vit D daily.

[SlowDragon Administrator in reply to lucylocks]

Once she works out which brand of levothyroxine suits her best

Get GP to specify named brand on prescription

Many people find Levothyroxine brands are not interchangeable.

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, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

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

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)

Aristo (currently 100mcg only) is lactose free and mannitol free. 

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 

 

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).

How GP should write prescription to specify named brand levothyroxine

[lucylocks in reply to SlowDragon]

Many thanks for all the info. about the different brands and doses, and the links.

She has received a combination of several brands.

When she told the pharmacy last year she wanted the same brand, they said to her, "because certain brands were difficult to get we are trying to help the patients by giving them what we can get hold of"

She is at the doctors next week so she will ask them to stipulate on the prescription to get the same brand.

[Charlie-Farley in reply to SlowDragon]

Hi SlowDragon

Having back calculated ug/Kg of Levothyroxine Lucy’s daughter was on it did come out at 116, so you are on point. Only concern is Lucy’s daughter wasn’t feeling totally well on the 150ug before she lost weight.

Only when everything else is optimal (and brand fixed) lucylocks will it become clearer as to what dose will suit. It’s awful being out of whack, tell her to hang in there and pace herself. I had to learn my limits through this experience - up until then I thought I had none. Mind you stable for well over a year and feeling better than in years so there is light - it’s just at the end of the tunnel.

[lucylocks in reply to Charlie-Farley]

Hi

we calculated dosage at 1.6ug per kg. is it more like 1.8?

[SlowDragon Administrator]

is your daughter on gluten free/dairy free diet?

[lucylocks in reply to SlowDragon]

She has tried gluten free before but it did not make any difference

[SlowDragon Administrator in reply to lucylocks]

did she stick on it at least 6 months and test thyroid antibodies before and after being gluten free

Has she ever tried dairy free?

[lucylocks in reply to SlowDragon]

Yes she stayed on it for more than 6 months, antibodies when GF were one, so now they are higher, but in range.

She has not tried dairy free, maybe this is the next thing to try.

Thank you.

[ThyroidThora]

Hi there,

Has your daughter’s blood sugars been tested? A huge weight loss without dieting and the night sweats could be a sign of a diabetic hypo or ketoacidosis in Type 1 diabetics. Perhaps, her blood sugars need checking. Plus, vomiting is a sign of ketoacidosis. Ketoacidosis and diabetic hypos are very serious and can be life threatening.

Good luck.

TT.

[lucylocks in reply to ThyroidThora]

Thank you for your reply,

My daughter lost the weight through dieting and gentle exercise.

She is at the doctors on Tuesday so I will tell her to ask for her blood sugars to be tested anyway.

[ThyroidThora in reply to lucylocks]

I hope all goes well and good luck.

[lucylocks in reply to ThyroidThora]

Thank you.