hot flushes and cramp in legs and feet. Low mood! - Thyroid UK

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hot flushes and cramp in legs and feet. Low mood!

Beardies2 profile image
15 Replies

hello everyone!

can anybody suggest what might be going on!

I am hypothyroid since approximately 1987, self diagnosed! Recently I have noticed an increase in low mood, hot flushes and cramps. I am 76 yrs old but still the hot flushes persist.

I get very tired and also get tingling in my hands which starts in the mornings. I take Levothyroxine 100/125mcgs alternate days. My last blood results from GP were:

SerumTSH 1.38mU/L 0.30-4.40

Serum free T4 level 13.7pmol/L 8.9-17.3

These were taken in January 2024

I am also on Escitalopram 15mgs daily: and Mirtazapine 15mgs nocte. Also Diazepam 5mg b.d.

These may be responsible for the fatigue, parasthesia, and muscle and joint aches. I know these medications probably put me into the depression app on health Unlocked but wanted to ask if something autoimmune could be responsible for my low mood and symptoms

I always explore the thyroid first, and then move on as required.

Any advice would be hugely appreciated!

P.S I do not hyperventilate when tingling occurs!

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15 Replies
Me2U profile image
Me2U

I get cramp at lot in my feet & toes esp.if anything touches them,like sheets tucked in tight,even when trying shoes on in the shop arghh! Think its part of the thyroid

Beardies2 profile image
Beardies2 in reply toMe2U

thanks Me2U , nice to know I am not alone!

greygoose profile image
greygoose

13.7 pmol/l (Range 8.9 - 17.3) 57.14%

You're probably under-medicated with an FT4 only 57 % through the range - should probably be more like 75%! And if your FT4 is too low, your FT3 is going to be even lower, and that's what causes symptoms.

Having said that, your symptoms sound as if they could be due to nutritional deficiencies - which most hypos have. So, have you had your vit D, vit B12, folate and ferritin tested? If not, I would suggest you ask your doctor to test them. :)

Beardies2 profile image
Beardies2 in reply togreygoose

Thanks for your very informative reply!

I forgot to mention I am on Vitamin B 12 inj every three months having had a level of 180 (130 -900) two years ago. Thanks to you and your colleagues it was flagged up as being extremely low! So grateful to you!

No point in retesting that as already on supplement.

Last serum Ferritin : 52ug/L (15-300)

I gA 2.37g/L (0.80-4.00)

Total 25-hydroxyvitamin D level 96nmol/L

Serum free T3 level 3.1pmol/L (2.4-6.0)

These were taken in August 2023. Apparently folate was in the normal to high range but cannot find the result, sorry.

I hope this is helpful to you as I feel I am drowning under a sea of antidepressants!

Thanks so much for your time!

greygoose profile image
greygoose in reply toBeardies2

FT3: 3.1 pmol/l (Range 2.4 - 6) 19.44%

That's why you're depressed! Your FT3 is far too low. You don't need antidepressants, you need T3.

That said, before chasing after T3, try increasing your levo - perhaps a coupld of times at six week intervals. See if that raises your FT3 high enough to make you well.

If you're having B12 injections, are you also taking a daily B complex? The Bs all work together so need to be kept balanced. Just taking one isolated B vit won't do much for you.

Last serum Ferritin : 52ug/L (15-300)

Much too low! You need to get a full iron panel done.

:)

SlowDragon profile image
SlowDragonAdministrator

Do you take Levo on it’s own well away from other medications

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

But presumably you are taking Mirtazapine at bedtime

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 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

Do you always get same brand levothyroxine at each prescription

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine, or if you change how you take it

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and especially as we get older

Exactly what vitamin supplements are you taking

When were vitamin levels last tested

Assuming you tested correctly, your results suggest you are not on high enough dose levothyroxine

Get FULL thyroid and vitamin testing done

Beardies2 profile image
Beardies2 in reply toSlowDragon

Thanks for all the information Slow Dragon

Spoke to my GP re: your and Grey Goose’s suggestions.

Extremely unhelpful response which didn’t help one bit. I was respectful of her professional status, but I do wonder if GP’s feel threatened by patients who ask for help using your in depth knowledge of thyroid conditions.

At least at the end I got a blood test for TSH, FreeT4 , and Free T3 plus cholesterol/ triglyceride levels tomorrow morning. She has also agreed to up my Levothyroxine from 100mcgs/ 125mcgs alt die, to 125mcgs od and retest in 6-8 weeks.

The iron panel I will have to do privately as NHS doesn’t do it.

I shall also order some Vitamin B complex to go alongside my Vitamin B12 injections.

As an ex ward sister I would never have been so prickly with my patients. Perhaps she was having a bad day!!

SlowDragon profile image
SlowDragonAdministrator in reply toBeardies2

See how much things improve with daily vitamin B complex and increase Levo to 125mcg daily

You may need more frequent B12 injections. You can request increase in frequency to every 2 months

The 3 months between injections often not frequent enough.

Is your hypothyroidism autoimmune?

Ever had TPO and TG antibodies test positive

or if both antibodies negative have you had an ultrasound scan

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Beardies2 profile image
Beardies2 in reply toSlowDragon

Thanks for all the input, much appreciated.

I have ordered a full iron panel from medichecks to start.

This morning had TSH, FreeT4 and free T3 plus Cholesterol and triglycerides plus Ferritin . All fasting and last Levothyroxine early yesterday morning.

Had ultrasound scan of thyroid in 2018 NAD.

TPA done 2018 =3 U/ml (less than (6,0)

Has TPO done but am looking for my result and will inform.

Magnesium=0.85 but don’t know range!

My Vitamin B12 inj are two monthly after a request

Is it safe to take Vitamin B Complex when already on Vitamin B12 inj?

No coeliac problem TTG IgA lev= 1.9 U/ml

I think that has answered your queries.

Thanks again!

SlowDragon profile image
SlowDragonAdministrator in reply toBeardies2

Is it safe to take Vitamin B Complex when already on Vitamin B12 inj?

Yes - B vitamins are water soluble

Important to keep other B’s in balance

Have you had TG antibodies tested

NHS wont test as your TPO are low

Significant minority of Hashi patients only have high TG antibodies

SlowDragon profile image
SlowDragonAdministrator in reply toBeardies2

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

As your coeliac test is negative you can consider going on strictly gluten free diet 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Full iron panel

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing iron.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test.

Avoid high iron rich dinner night before test

If already on iron supplements, stop these 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40. 30 to 180

Females 40 ≤ age < 50. 30 to 207

Females 50 ≤ age < 60. 30 to 264l

Females Age ≥ 60. 30 to 332

Males 18 ≤ age < 40 30 to 442

Males Age ≥ 40 30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.

Beardies2 profile image
Beardies2 in reply toSlowDragon

Morning!

I have the following results of my latest thyroid tests. Perhaps you could give me your expert opinion!

TSH = 0.63 mu/L (0.30- 4.40)

Free T4 = 15.4 pmol/ L ( 8.9- 17.3)

Free T3 = 3.4 pmol/L ( 2.4 - 6.0)

Serum Ferritin = 69ug/L

I have increased my Levothyroxine as suggested after these results to 125mcg o.d., bur was wondering if the TS H was a bit low for the increase.

What do you think?

Will do iron panel as suggested, thanks !

SlowDragon profile image
SlowDragonAdministrator in reply toBeardies2

Was test done as recommended, early in morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Which brand is 100mcg and which brand 25mcg

Free T4 (fT4) 15.4 pmol/L (8.9 - 17.3) 

Ft4 77.4% through range

Free T3 (fT3) 3.4 pmol/L (2.4 - 6) 

Ft3 only 27.8% through range

Shows poor conversion rate

Very common issue especially as we get older

For optimal conversion we need GOOD vitamin levels

Are you now taking daily vitamin B complex

You need full iron panel test

Have you had coeliac blood test yet

Retest thyroid levels again 6-8 weeks after going on strictly gluten free diet

Beardies2 profile image
Beardies2 in reply toSlowDragon

Hi , thanks for your prompt response!

Test was fasting and taken at 09:30, only appointment left.

Only water taken and last thyroxine 24hrs before.

Brands are: Wockhearts 25mcg o.d.

Accord 100mcg o.d.

Coeliac test negative.

Slightly worried about adding Vitamin B Complex as I suffer from anxiety and depression, although which came first is anyone’s guess. I had burnout from my work which was twenty years ago, and now suddenly it appeared again. Not sure if it’s thyroid related or not! I read an article which said that Vitamin B complex could worsen anxiety, is this correct? I was looking at Purolabs brand which seem to be good if expensive!

Main problem is parasthaesia of my hands from morning until late in the afternoon. I take my Escitalopram at about 5pm, but don’t know if it’s the SSRI to blame or what! I do not hyperventilate. Oh and the hot flushes and cramp! Upped my salt intake in case I am hyponatraemic from SSRI. Last Sodium was 133 which I the lowest of normal range.

So frustrating, and I reckon I am driving my GP round the bend!

I will do the Iron Panel as directed and look into a gluten free diet.

Any other advice will be hugely appreciated!

Thanks!!

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