Peri menopause and levothyroxine : Hi, can... - Thyroid UK

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Peri menopause and levothyroxine

Hookie01 profile image
19 Replies

Hi,

can anyone tell me much about hypo thyroid and menopause. I had RAI 4 years ago, so now hypo thyroid. Since the beginning of the year I have been suffering with pain in the shoulders ( especially the right), both elbows and the tops of my feet. And just generally my body aches. I just feel so weak. My mood is low, well a bit up and down, suffering with bloating etc. Drs just tell me I'm too young for Peri menopause blah blah blah.

Thing is,I used to be on 125/150 alternate levo. I stopped levo to try something else and since going back on levo I can't go past 100/125 alternate as if I go up to 125 a day it seems to make me more weepy and makes my body hurt more. I switched levo to make sure it wasn't a certain brand but I'm feeling the same.

Does anyone know if this is normal? I've got myself in such a state, I'm so confused with what to do.i can't stand the pain and low mood but worried that the low dose is causing the bloating and weight gain. I'm big anyway and now I feel awful and really don't want to put anymore on. I'm so done with all this,I wonder if I will ever feel normal again.

Sorry,feeling really sorry for myself today.

My question is, can peri menopause lead to a reduction in meds?

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19 Replies
SlowDragon profile image
SlowDragonAdministrator

You really need to get FULL thyroid and vitamin testing done

Likely low vitamin levels after stopping T3

Low vitamins make levothyroxine dose hard to tolerate

Have you had T3 reinstated yet

Get tested 6-8 weeks after being on constant unchanging dose and brand of levothyroxine (and T3)

Have you tried splitting levothyroxine into 2 smaller doses waking and bedtime…..can give better conversion and easier to tolerate increase in dose

Are you on strictly gluten free or dairy free diet

Test early morning, and last dose levothyroxine 24 hours before test

Private testing Monday or Tuesday morning

Come back with new post once you get results

Lalatoot profile image
Lalatoot

Hookie I went through full menopause at 44 so you are not necessarily too young!To help we really need some results preferably tsh, ft4 and ft3 along with vitamin levels. That way we can judge how effective your current dosing is and what might be done to help.

Hookie01 profile image
Hookie01 in reply to Lalatoot

My latest blood results are at work in my drawer and I'm on holiday this week, so will post them next week.My vitamin levels are basically the same as they have been if not a little higher. My thyroid levels always show TSH out of range but T4 and T3 in range. So I have no idea what is going on.

SlowDragon profile image
SlowDragonAdministrator in reply to Hookie01

Well there’s a huge difference where in range results are how you feel

Ft3 range 3.1-6.8

You would feel very unwell if Ft3 was below 4

Struggling if Ft3 was under 5.0

You would probably feel ok if Ft3 was 5.5

Probably feel good with Ft3 around 6

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

Is this how you do your tests

What vitamin supplements are you currently taking

Hookie01 profile image
Hookie01 in reply to SlowDragon

Currently taking B12 with folate, not taking vit D due to tinnitus but level is over 50 so not deficient but I know its not optimal, just can't deal with the noise and blocked feeling I get in the left ear when I try and raise my levels, the summer has been bad for it, really affects my mood.

Yes that is the way I do my tests.

SlowDragon profile image
SlowDragonAdministrator in reply to Hookie01

Not tolerating vitamin D suggests your levothyroxine dose is probably inadequate

Are you taking any magnesium supplements

Hookie01 profile image
Hookie01 in reply to SlowDragon

I think the noise from vitamin d might be something to do with phosphate, calcium and electrolytes as I've just learnt that RAI can deplete phosphate , calcium and vit d and my inorganic phosphate level was under range on my last test. Dr didn't flag it so obviously not concerned, calcium is on the lower side to. But I don't who to turn to for help.

Magnesium is on the high side so not taking Magnesium

SlowDragon profile image
SlowDragonAdministrator in reply to Hookie01

Many of us don’t improve until vitamin D is at least around 80nmol

Magnesium blood test is highly unreliable

Low B vitamins linked to low vitamin D

B vitamins are made in gut biome and gut needs good vitamin D

Exactly what folate and B12 supplements are you currently taking

Hookie01 profile image
Hookie01 in reply to SlowDragon

It's barefoot nutrition B12 complete

SlowDragon profile image
SlowDragonAdministrator in reply to Hookie01

This contains folic acid not folate

Also contains biotin…so need to stop a week before blood test

barefootnutrition.co.uk/pro...

Difference between folate and folic acid

chriskresser.com/folate-vs-...

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

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

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)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 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 methyl folate supplement and continue separate B12

Low B12 symptoms

b12deficiency.info/signs-an...

If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

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

B12 drops

healthunlocked.com/thyroidu...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Hookie01 profile image
Hookie01 in reply to SlowDragon

This is the advice I followed when choosing B12

You can supplement with folate if your dietary intake is inadequate. Look for products that contain the Metfolin brand, or list “” or “5-MTHF” on the label. Avoid products that say “folic acid” on the label. Make sure to check your multivitamin because most multis contain folic acid and not folate.

Does the brand I have not state 5-methyltetrahydrofolate? I am so confused. I can't take B complex as it causes pins and needles in my arms at night which indicates high levels of other b vitamins

SlowDragon profile image
SlowDragonAdministrator in reply to Hookie01

Apologies…yes ingredients do say methyl folate

New ingredients regulations….now seem to list methyl folate as folic acid

But you will need to stop a week before tests as contains biotin

Buddy195 profile image
Buddy195Administrator

As others have said, first test TSH, FT3, FT4 and key vitamins, then post results on the forum for advice.

Regarding peri menopause, it may be useful to have a look at Dr Louise Newson’s free Balance App, as I find it really useful for comparing HRT medications & having up to date research articles. There is also an ability to post questions.

healthunlocked.com/redirect...

pennyannie profile image
pennyannie

Hey there again :

I'm sorry you are in this situation and looking back it seems you tried adding T3 and did trial a brand of NDT.

Having had RAI myself I find NDT softer on my body as T3 made me feel a little turbo charged - though this could have been me as I was very unwell and with terrible brain fog and reduced cognitive function,

Vitamins and mineral, especially those of ferritin, folate, B12 and vitamin D need to be maintained at optimal for any thyroid hormone replacement to work ;

You must be dosed and monitored on your T3 and T4 blood tests results and ignore the TSH :

Your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop on which the TSH relies on is broken as your thyroid has been totally disabled by having had RAI thyroid ablation.

Primary hypothyroidism caused by RAI is said to be more difficult to treat.

RAI is known to trash vitamins and minerals.

RAI can present with symptoms similar to those of Sjogren's Syndrome and fibromyalgia :

The list goes on :

You might like to read around Graves and treatment options on elaine-moore.com

You will not want to read this but I think it explains a lot of the unanswered and unresolved symptoms we live with:

ncbi.nlm.nih.gov/pubmed/306...

Hookie01 profile image
Hookie01 in reply to pennyannie

Hi, I have tried T3, it helps but couldn't get the lactose free version for love nor money, so gave up. Haven't tried NDT as I can't afford it, I really want to try NP thyroid though, maybe when I win the lottery! I tried metative but gave me bad headaches. After recent blood tests I discovered my inorganic phosphate level was under range, (Dr obviously wasn't concerned about it as Said my results were fine) and my calcium is on the low side. I have since read that RAI depletes phosphate, calcium and vitamin d, so have been trying to raise these.

I'm just so confused and I've had enough. I should never have had RAI. I don’t know who I am anymore, I don't know what to think and what to do, all I want is to feel normal again, to feel happy, have energy again. I just feel so alone as no one knows how I'm feeling.

I'm so sorry to rant, just feeling so low today.

pennyannie profile image
pennyannie in reply to Hookie01

Hey, I've been there too - and one of reasons why I stay on here, trying to help others in a similar dark place.

I too am upset I took this toxic substance, I had no idea back in 2005 that there were any options and told the AT drug Carbimazole was too dangerous to stay on long term.

I was totally compliant and did as suggested and there you go - and I feel deeply disappointed and disillusioned by the one organisation that I thought was there in our hour of need.

I think I was so angry I wanted to get well in spite of the system that refused me any help or acknowledgement of how unwell I became and when refused both T3 and NDT fighting the system simply exacerbated my symptoms and I decided to jump ship and started self medicating.

Hookie01 profile image
Hookie01 in reply to pennyannie

I am pretty much trying to self medicate as Drs are just rubbish. I think I am just so overwhelmed by it all. I struggle with reading things now days, nothing goes in and I can't concentrate so that really doesn't help. It's like my brain has stopped wanting to learn new things. I'm a single mum, work full time, boy is 15, autistic and hard work, just feel life is too hard now days, I just can't do it anymore

pennyannie profile image
pennyannie in reply to Hookie01

I think ' stuff sinks in ' even with the brain fog but you have your hands full already so I guess you haven't the time to spend to read, research and apply as I did.

I'm really sorry - it does seem like the odds are stacked against us.

Is there a different doctor who might at least show some support and understanding.

SlowDragon profile image
SlowDragonAdministrator in reply to Hookie01

Have you had your sons thyroid levels tested

Autism and hypothyroid may be linked

Definitely get thyroid antibodies and vitamins tested too

autismparentingmagazine.com...

autismparentingmagazine.com...

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