Advice needed - before I lose the plot! - Thyroid UK

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Advice needed - before I lose the plot!

Henson1980 profile image

Evening all, looking for a little bit of advice.

A few months ago my TSH which had been under control with levo had pretty much doubled within a couple of weeks, the Dr increased my meds from 100mcg to 125mcg. I left it 3 months before Re-testing through medichecks as I was unable to get a drs appointment. My results now show that I’m overactive. I kind of worked that one out as I have been suffering hot flushes, heart palpitations etc. So my question is…how do I strike a balance when it seems 100mcg is not enough but 125 is too much? All my other results ie b12, vid D have come back normal but Folate came back at 2.2ug/l. I take Vit Bcomplex at lunch time, selenium 200mg, Vit D 1000mg and magnesium in the evening. I take my levo first thing in the morning with a pint of lemon water then leave an hour before eating. Am I doing something wrong? I can’t quite work out how to get this right!

Also, iv never been over active so I’m not sure if this is very over active or only just, any advice would be much appreciated thank you x

33 Replies

Are you on 125mcg daily? Sometimes people can have a medicine regimen where you alternate between doses I.e. 100mcg one day, 125mcg the other.. until you find the right balance for you?

Hi yes I’m on 125 daily. I did wonder about alternating between 100 amd 125 every other day. My concern is I’m not sure how overactive my thyroid is, as in I know it’s over but is it severely over? if so then would it be more sensible just to revert back to the original dose of 100mcg?

SlowDragon profile image
SlowDragonAdministrator

Please add actual results and ranges on vitamin D, ferritin and B12

Folate is extremely low

Which B complex are you currently taking

Did you stop taking this a week before blood test as it contains biotin

Improving all four vitamins to OPTIMAL levels will improve how your body uses thyroid hormones

Are you on strictly gluten free diet?

Thanks slow dragon. I stopped taking the Vit b complex a week before the test. I use the brand Igennus. I’m not strictly gluten free, only partially which I know is as good as not being GF at all but this is something admittedly I struggle with 🥴

Vitamin levels
SlowDragon profile image
SlowDragonAdministrator in reply to Henson1980

Perhaps add separate folate for few weeks

And in week before do blood tests, take separate folate and separate B12 when you stop vitamin B complex

Next time you need to buy vitamin B complex perhaps try Thorne B complex or Jarrow B complex

SlowDragon profile image
SlowDragonAdministrator in reply to Henson1980

Vitamin D is on low side.

How much vitamin D are you currently taking

I’m taking a vitamin d spray called better for you it’s D3000 amd K2

SlowDragon profile image
SlowDragonAdministrator in reply to Henson1980

Yes, I find this very good….Many other members use it

One spray = 1000iu

How much vitamin D are you currently taking….if any?

Trial and error what dose suits each person

Perhaps try 2 sprays per day (2000iu)

Retest after 2-3 months on daily dose

You might need higher dose in winter than summer

Recommended to test twice year

NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

I do two sprays but then I was very ad hoc with it so I need to be more strict and make sure I’m taking it every night xx

SlowDragon profile image
SlowDragonAdministrator in reply to Henson1980

Before considering reducing levothyroxine dose

I would work on improving both vitamin D and deficient folate then retest thyroid levels

Cheapest option is Monitor My Health for TSH, Ft4 and Ft3 £29 with 10% off if order with Thyroid U.K. code

thyroiduk.org/help-and-supp...

That’s great thank you! I will give it another month on my current dose whilst maintaining my daily vid d and B complex, then re-test in a month xx

SlowDragon profile image
SlowDragonAdministrator in reply to Henson1980

Set an alarm on your watch so you never forget vitamin D and B vitamins (best taken immediately after breakfast)

Recommend a separate weekly pill dispenser for vitamins…makes it easier to remember

And get separate folate for the week be test when you need to stop vitamin B complex

Jarrow folate is good option

amazon.co.uk/Jarrow-Formula...

Thank you. How far apart should I take my levo and the Vit d & b? I generally take the levo as soon as I get up in the morning then leave an hour before breakfast is that long enough before taking the vitamins?

SlowDragon profile image
SlowDragonAdministrator in reply to Henson1980

Have you considered taking levothyroxine at bedtime

Many people find it’s more convenient and possibly more effective

Plus you don’t need to wait for morning tea

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D you swallow should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Hmmm so if I take the levo just before I go to bed and take the vid d, selenium and b complex first thing in the morning?

Sorry for all the questions but can I take the selenium 200 alongside levo before bed?

SlowDragon profile image
SlowDragonAdministrator in reply to Henson1980

No …all supplements must be minimum 2 hours away from levothyroxine

Hi SlowDragon

I’m just about to order the Jarrow folate as recommended by you a couple of weeks ago. I just wondered wether it’s safe to take Vit b complex and the folate together or should I just take the folate?

I’m aware that if I’m taking the b complex I should stop this one week before having my bloods done and just take the folate anyway. I’m just concerned that if I take both the folate and Vit b complex then it seems quite a lot of vitamins to take in addition to the selenium , Vit d and magnesium as well. Is it safe?

SlowDragon profile image
SlowDragonAdministrator in reply to Henson1980

You could take folate and vitamin B complex alternate days….but in week before test …take just folate daily

No, you are not over-active. And nor can you be because you are hypo. The thyroid cannot suddenly go from not producing enough hormone to producing too much. You could be over-medicated, but not according to those labs.

Your TSH is suppressed, certainly, but that doesn't mean much. You are only over-medicated if your FT3 is well over-range. Yours is a long way from that.

What were these symptoms that make you think you're over-active?

What time of day did you do this test? And how long a gap did you leave between your last dose of levo and the blood draw?

Henson1980 profile image
Henson1980 in reply to greygoose

Ah that’s interesting, shows how much I know, I really need to get my head around reading these results because I assumed (going by my TSH) that I’m over medicated. I have been getting some fairly frequent hot flushes and irritability, I assumed by the readings that this was why, however (and this is where it gets confusing as symptoms mirror each other) I believe I could be peri- menopausal but as some of the symptoms of that ie hot flashes and sleep disturbances are similar to to thyroid issues the Dr won’t issue HRT until she knows that it’s definitely not the thyroid causing it. So would you suggest I carry on with the 125mcg?

I took the test at mid day and stopped the levo a day before I done the test x

greygoose profile image
greygoose in reply to Henson1980

Well, at midday, your TSH would be at its lowest. So, it doesn't mean anything. TSH is highest around midnight, then slowly drops til about 9 am, when it falls quite sharply and continues falling til midday, then starts rising again. So, we always recommend getting the test before 9 am. That is just one of the reasons that you should never dose by the TSH alone.

Mollyfan profile image
Mollyfan in reply to greygoose

Could they not be over medicated for them? The reference range is simply a range that 90% of “normal” people fit into. I believe that there is a theory that every person has a set point at which they feel well. It may be that that Henson’s set point is nearer the centre of the reference range and she would feel better with slightlyless medication.

Personally I would try 100/125 alternate days and see how I felt. I would also ask the GP to let you try HRT when you are on a stable dose and see if it helps.

Good luck!

greygoose profile image
greygoose in reply to Mollyfan

Henson could be over-medicated for her, but, the only way to find out is to reduce the dose, wait six weeks and see what happens. There's no way of knowing for sure what anybody's set-point is. But, if one is going to do that, it would be best to do it alone, without involving the doctor. Because once a doctor has reduced your dose, it can be very difficult to get it raised again if the reduction doesn't help.

But, frankly, I would be very surprised if she was over-medicated, even on a personel level. That FT3 is not much over mid-range, and the majority of hypos need it higher than that. :)

Those symptoms sound like menopause. But I’m no expert. I can’t see why a little Transdermal HRT could not be added. I take Levo and Estrogel. A simple trial would possibly solve the issue 🤷‍♀️

Hi Sarah, what about progesterone? Do you take etogestron?

I have no uterus so estrogel only. How ever if you have one then you can have combined patch which includes progesterone. I low dose is perfectly acceptable even if peri menopausal. You will know within a few day as the symptoms disappear very quickly. You are replacing the hormones that you are losing .Try Themenopausedocter.com

Dr Louise Newson is the guru 😁

I just want to add that the advice from all the gurus above re your thyroid levels really should be taken before you go down the HRT route. I’ve been on HRT for 5 years and started having thyroid problems 2 years ago . I’m convinced that my HRT and messed up HPT/HPA axis have caused the thyroid problems. I think if you get you levels right for thyroid ( including vitamins etc) you can then address any meno symptoms.

Thank you that’s really helpful. That’s the problem I don’t know what’s causing the issues wether it’s meno or thyroid so I’m determined to get my thyroid levels balanced first then see if I’m still experiencing the hot flushes etc.

I know about the menopause Dr, I recently arranged a menopause webinar through work for Our NHS staff, we used a Dr from Newson health, she was amazing!

BUT, how do you feel in yourself apart from the results ? Just an aside about vit D - advice is that it be taken with something fatty, perhaps midday rather than at night.

Henson1980 profile image
Henson1980 in reply to Santolina

Not great to be honest but then i also have a cough and cold and two poorly grandsons so that has a part to play in it. It’s more the hot flushes, the odd heart flutter and irritability I have noticed. X

My doctor at one point had me taking 112mcg during the week and 100 on the weekends. (We can get 112mcg in Poland, unfortunately in the UK not as far I know.) That kept things in line better for me at that time.

sounds like you need to incorporate ashwagandla into your bedtime routine to both help you sleep & deal with the bloody menopause. Make sure you're drinking a litre of water a day and perhaps skip the lemon water in the morning - try just water. BLACK COHOST is terrific for menopausal symptoms too, recent studies verify so it's not just anecdotal. And last, can you access online exercises in breathing! yes, deep abdominal breathing is more important than we realise. The breath can help you to calm. good luck!

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