Horrific night sweats.: I know some of you... - Thyroid UK

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Horrific night sweats.

ATVMWF profile image
33 Replies

I know some of you knowledgeable people will be able to give me some advice about how to help with the horrific night sweats I am having. This is fairly longstanding (17years), since I was about 50, now 67 but recently I have suffered long bouts of them. Currently, have had them for 47 nights in a row, often waking 3-4 times drenched in sweat. This is causing me a lot of distress and I am beyond exhausted. I am the end of my tether. I am so run down that my mouth has developed big red blister type ulcers as well.

I have never discerned a pattern over the last 17 years as it can be that I get them for weeks, then they just stop for a random amount of time, then start up again. I was on T4 for 4 years when I first experienced them and I take T4 and T3 combo now (75 mg T4 & 20mgT3). Also on HRT as had hysterectomy at 39. I also have Sjogrens not on any treatment for that but due to start some when I return from holiday.

Latest blood results from Medichecks (Nov 22)

Folate -45 (8.83--60.8)

Vit B12 - 73(37.5--188)

Vit D -136 (50--250)

TSH-0.005 (0.27--4.2)

FT3 -6.1 (3.1--6.8)

FT4 -17.6 (12--2)

CRP-2.95 (3.0)

Any advice/help gratefully accepted as I have hit rock bottom.

Typing this on holiday to (supposedly) celebrate my hubbies birthday today. Yes he is a Valentine's birthday boy and I am feeling ill, having not slept again and my mouth is so sore I cannot eat or drink anything. The lovely plans for a meal out tonight have just been cancelled and I am stuck in our rented apartment feeling very sorry for myself. Sorry for the whingefest!

ATVMWF

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SlowDragon profile image
SlowDragonAdministrator

What vitamin supplements do you normally take

Night sweats strongly associated with low B12

Do you normally take a daily vitamin B complex?

Suggest you get FULL thyroid and vitamin testing on your return from holiday

No ferritin result in those last test results

Do you always get same brand levothyroxine at each prescription

Same brand T3

Are you on strictly gluten free diet and/or dairy free diet

ATVMWF profile image
ATVMWF in reply toSlowDragon

Hi SlowDragon,Many thanks for prompt reply.

I don't usually supplement Vit B12, although, my mum suffered from P.A.

My ferrtin was checked last year (Aug) and was over range quite a bit. Mentioned to GP who dismissed it.

T4 are Teva, usually Accord, just spotted that as I checked for you. I know many people don't tolerate Teva. Just had a 3 month prescription filled at end of Jan. Annoyed I didn't spot that and wonder if that is cause of mouth ULCERS?

T3 is via private prescription. 5mg x 2 Sigma Pharma and 1 half of Tiromel.

Been strictly GF for approx 4 years.

ATVMWF

SlowDragon profile image
SlowDragonAdministrator in reply toATVMWF

I would get FULL thyroid and vitamin testing done 6 weeks after changing dose

High B12 result can be deceiving

You could have Paradoxical B12 deficiency 

b12oils.com/paradoxical.htm...

Suggest you consider adding vitamin B complex AFTER blood test

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

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

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

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

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

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 

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) 

Thorne currently difficult to find at reasonable price, should be around £20 

If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement

amazon.co.uk/Yipmai-Liposom...

or available as Vitablossom brand here

hempoutlet.co.uk/vitablosso... &description=true

Or 

Igennus Vitamin B complex. Nice small tablets. Full dose is 2 tablets per day. Most people are fine with just single tablet 

igennus.com/products/super-...

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

I had paradoxical B12 deficiency…..always had high B12 results….yet lots of low B12 symptoms

Adding a vitamin B complex (and separate B12 supplement initially) was very beneficial

ATVMWF profile image
ATVMWF in reply toSlowDragon

Hi SD,Lots to absorb here, especially the post on the paradoxical B12 deficiency.

When I think back I used to supplement with Cobalamin and didn't feel well so stopped it.

My folate levels were also dire going back 2 years ago so began supplementing that and eventually dropped to twice weekly, which I continue with.

Over the last 18 months I have been focussing so much on trying to get my T3 actually off the bottom of the range buying T3 via private prescription that I have taken my eye off the ball in other areas. It has been a long journey to get my FT3 up from 3.1 to 6.1.

Not until I felt so bliddy awful these last few weeks and especially today I knew that something was not right. The night sweats are so debillitating, they drain you and I have started to dread going to bed.

The knowledge and support from all on this site is humbling.

No doubt I will have to come back and ask questions again when I return to the UK in 2 weeks and after I get the blood tests done but many, many thanks for your advice so far.

ATVMWF

SlowDragon profile image
SlowDragonAdministrator in reply toATVMWF

My ferrtin was checked last year (Aug) and was over range quite a bit. Mentioned to GP who dismissed it.

high ferritin is common after menopause.

Not considered abnormal until over 600 - see link below

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

Inflammation of Hashimoto’s can cause high ferritin

Have you or GP done full iron panel test to check its only ferritin that’s high

Medichecks iron panel test 

medichecks.com/products/iro...

Jaydee1507 profile image
Jaydee1507Administrator

Free T4 (fT4) 17.6 pmol/L (9 - 19) 86.0%

Free T3 (fT3) 6.1 pmol/L (3.1 - 6.8) 81.1%

If anything your free results are a touch on the high side. The only other thing I can spot is that your B12 is at 23% of it's range. Are you taking anything with B12? What other supplements do you take?

Would need to see a ferritin result for completeness.

ATVMWF profile image
ATVMWF in reply toJaydee1507

Hi Jaydee,I upped my T3 in Nov 22 that may explain my results for thyroid. I will half my lunchtime T3 on alternate days and retest in about 6 weeks, as I agree that they look a bit high.

I have just replied to SlowDragon about Vit B12. Don't normally supplement as I do with other vitamins. Think this is something I need to do.

SD also picked up that I had been dispensed Teva end of Jan, didn't realise until I just checked. My pharmacy always gives me Accord and it is on my notes. Wondering if that is root of mouth ulcers. Annoyed I didn't spot that as I usually check all my meds but have been a bit busy recently and with the night sweats haven't been firing on all cylinders.

Just checked my last two Ferritin tests from Medichecks.

April 22

Ferritin-263 (13--150) significantly over range

Nov22

Ferritin -229 (30--650)- they obvs changed their range.

I am like a limp rag today and hubby is at wits end. Even worse stuck in foreign country when we should be enjoying his birthday celebrations.

Appreciate that you have come back with advice and observations.

Thank you.

ATVMWF

Jaydee1507 profile image
Jaydee1507Administrator in reply toATVMWF

T3 is not the same as T4 and we need to take it consistently each day at the same dose as it is the active hormone. Alternate days for T3 isn't a thing. FT4 is recommended to be around 70% so maybe better reducing that by 25mcgs or 12.5mcgs? That would also reduce your FT3 slightly as well as FT4.

It's recommended to take a B complex to keep all the B's in balance. That would contain folate and B12. This one is a good one. amazon.co.uk/Yipmai-Liposom...

In lead up to blood test (5-7 days) swap out B complex for a separate folate & separate B12 spray or lozenge to avoid the biotin the the complex interfering with your test.

They did change their ferritin result but it also includes the range for males I believe. Would ignore that. Perhaps ask a different GP about high ferritin. I'm no expert on iron but what was a full iron panel looking like?

ATVMWF profile image
ATVMWF in reply toJaydee1507

Hi Jaydee1507,Always something to learn isn't there. I will tweak my T4 not T3 from tomorrow and as soon as I get back to UK (another 2 weeks) I will look to get the B complex you recommend. I could get something here (Madeira) but it might be a little difficult getting the right stuff.

I did my own bloods via Medichecks. GP never keen to run bloods apart from usual TSH etc.

I supplement with Vit D + K2 daily (better you spray)and Methylfolate 2x weekly, also Seabukthorm oil daily.

Appreciate sound advice.

ATVMWF

Regenallotment profile image
RegenallotmentAmbassador

hi, good luck, I had nightsweats for years too. I don’t even get them pre menstrually now (since taking the same advice you have above) amazing when it works.

I need to share that I have found not all B Complex supplements are equal.

I’ve just returned igennus B complex back to Amazon as it’s rubbish and my early warning signal of pins and needles in my arms overnight has returned. I’ve re-ordered Thorne Basic B which works well for me from iherb.

🌱🦋🌱

Imaaan profile image
Imaaan

For the mouth ulcers, you can try licorice root. I havent tried it but I've read several reviews of ppl adding licorice root power to water and swooshing it around their mouth and spit it out. Its helpful for stomach ulcers so I'm inclined to think that it would be helpful for an ulcer in the mouth.

thyr01d profile image
thyr01d in reply toImaaan

Thanks for this post Imaaan, I have horrid mouth ulcers too and love licorice - should have listened to my body!

Imaaan profile image
Imaaan in reply tothyr01d

Just a heads up that licorice can affect blood pressure and potassium

thyr01d profile image
thyr01d in reply toImaaan

Thanks Imaaan, that's helpful, and now I've remembered that Dr P (am I allowed to enter his name?) used to recommend licorice for some thyroid problems.

Imaaan profile image
Imaaan in reply tothyr01d

Surprised that it was recommended for the thyroid. I took it for adrenals, gastritis and reflux but in a deglycyrrhizinated licorice form to avoid the effects of licorice

thyr01d profile image
thyr01d in reply toImaaan

Well I think strictly speaking it was for adrenal issues as a consequence of untreated hypothyroidism.

marigold22 profile image
marigold22

wellsprings-health.com/?cam...

It might be worth trying this natural progesterone cream. I used it pre and post menopause and never got night sweats. The price has leapt, it was around £9 when I used it.

ATVMWF profile image
ATVMWF in reply tomarigold22

Hi Marigold22,Yes the price has shot up, now £38 but a price worth paying if it works.

Sweats are making my life a misery.

Along with all the other advice I'll look into this when I get back into UK.

Many thanks,

ATVMWF

sparkly profile image
sparkly

Hi there , night sweats can be so debilitating I know. You mention your on hrt. What do you take and have you had your oestrogen increased over this time to try stop the night sweats?

ATVMWF profile image
ATVMWF in reply tosparkly

Hi Sparkly,On HRT patches upped from 25 to 50, then 75 weekly to try and stop the night sweats. Hasn't worked though. Think SlowDragon may have pointed me in right direction but will get bloods done first before taking supplements.

ATVMWF

thyr01d profile image
thyr01d

This may not be relevant or could be helpful. I think using oestrogel cream at nights stops my night sweats - trouble is I am so bad at remembering anything consistently for any length of time I can't be sure!

ATVMWF profile image
ATVMWF in reply tothyr01d

Hi thry01d,On HRT patches but not helping unfortunately.

ATVMWF

sparkly profile image
sparkly in reply toATVMWF

I wouldn't give up on the hrt front. You might not be absorbing with the patches and need to change to gel or spray

ATVMWF profile image
ATVMWF in reply tosparkly

Sparkly, Haha! That will be right and just my luck. Just had an expensive private prescription filled for 3 months for them, then managed to buy then abroad. Was delighted, so bought 12 months supply. My GP won't prescribe HRT over 60....

Hope I am absorbing it via patches as it will be a right hassle going back to private doctor for gel. I am also thinking that as I have had these recurring night sweats for so long (17 years), there is something else going on as SD suggests related to B12 and B2. I will explore those avenues and start ticking everything off.

As us thyroid bods have learnt from bitter experience, we have to investigate and heal ourselves, as the medical fraternity are pretty clueless bare some notable exceptions.

I greatly value the sound advice on this forum and never dismiss anything as it has been discovered through pain suffering and heartache.

Thanks,

ATVMWF

sparkly profile image
sparkly in reply toATVMWF

Yes sadly the menopause world can be just as bad as the thyroid world when it comes to getting treatment. I am fortunate that I've had positive outcomes on my menopause journey with the nhs but it was a private endocrinologist who spotted me being peri and basically saved me.A lot of Gp's just don't have peri/menopause knowledge. It's worth asking to be referred to your nhs local menopause/women's health clinic as being over 60 is no reason not to be prescribed hrt. You've been let down and its wrong.

Patches didn't suit me and took nine months to find the right regime but 5 years on I still have to tweak now and again to control the night sweats.

No way will I ever be coming off mine or my testosterone ever!

Hope you sorted and eliminate the sweats.

ATVMWF profile image
ATVMWF in reply tosparkly

Hi Sparkly,Yes, menopause treatment, or lack thereof, is another minefield that females have to contend with. Can't help thinking that if men suffered like this it would be much easier to get the treatment required.

I'll ask private doctor about gel but am definitely going explore the B vitamins and get bloods retested.

Thanks for all your advice and support.🙂

ATVMWF

TiggerMe profile image
TiggerMeAmbassador in reply toATVMWF

I didn't get enough out of patches so swapped to the spray which is great

thyr01d profile image
thyr01d in reply toATVMWF

I found the same as Sparkly has mentioned, that the patches didn't work well for me, nor did vaginal cream (which no-one claims is for night sweats anyway) and I had to try a few things. I also have to apply the gel at night when going to bed for it to help the night sweats.

ATVMWF profile image
ATVMWF in reply tothyr01d

Thyr01d,That's interesting that it is only the gel that keeps the sweats at bay.

ATVMWF

radd profile image
radd

ATVMWF,

I have been reading about the marvellous effect of milk thistle on hot flushes due to the silibinin that helps calm the fluctuations of oestrogen by having a mild agonistic effect on the oestrogen receptors. 

However, silibinin is a major constituent of silymarin that also contains silychristin that Tania Smith (of Thyroid Patients Canada) wrote an article about regarding its properties being endocrine disrupting. 

However, her article also states the unsuitability is down to the type of thyroid issue and how your thyroid physiology works. In other words some people with thyroid issues will be fine taking milk thistle. I have taken milk thistle quite regularly without any issues but always in low doses and not for hot flushes but just general liver health.

The other thought is have you tried the Wellsprings creams to replace some of your missing hormones? 

Silybum marianum extract on menopausal symptom ... pubmed.ncbi.nlm.nih.gov/327...

The Benefits Of Milk Thistle For Menopause Relief ... nutriadvanced.co.uk/news/th...

Milk thistle alters thyroid hormone transport .. thyroidpatients.ca/2022/01/...

Wellsprings .. wellsprings-health.com

ATVMWF profile image
ATVMWF in reply toradd

Hi Radd,That's interesting. Might research more on milk thistle via Canadian site. The patches don't seem to be doing much for me.

Thanks.

ATVMWF

Incoguto profile image
Incoguto

You could be a little overdosed, I get night sweats when my frees are highish in range, but still in range.You said your mouth is sore - do you mean it's burning? This could be b12? Or being over or under on thyroid meds

ATVMWF profile image
ATVMWF in reply toIncoguto

Hi Incoguto,No, massive mouth ulcers all over tongue and inside of lips. Used nearly a whole tube of Bongela and been rinsing mouth with salty water...boy did they sting!😮LOL

I have just downed my T4 on advice from others on forum. Will see what effect that has and will retest my bloods in about 6 weeks.Hopefully, by then I will have had a chance to explore some of the wonderful advice provided by everyone.

Many thanks, ATVMWF

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