going even more crazy!: So, I was on 100mcg for... - Thyroid UK

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going even more crazy!

Goinginsane1 profile image
29 Replies

So, I was on 100mcg for years and years. Had a baby 16 months ago, levo dose reduced to 75mcg a couple of months after the birth. Within a short period of time of this I started with pain in my armpits that was constant for months on end. Scan revealed lymph nodes being reactive but not unusual. Had levo increased back to 100mcg last July due to sluggish bowels & looking back I did not have any armpit pain during that time. Blood test showed over medication so dose reduced back down to 75 one day & 100 the next ) alternating. If feel is it too much of a coincidence that the armpit, chest and breast pain has returned with a vengeance since this a couple of months ago. I have been for a blood test today due to a constant headache for the last 3 weeks and had itchy eyes and blurry vision for a number of weeks now. Optician said I have extremely dry eyes which she believes is linked to the thyroid. Again my eyes have only become and issue since the reduction in dose a couple of months ago and never suffered before or had headaches. Eye sight is fine.

Sorry for the long post but I am wondering if anyone has any advice for me please as my anxiety is through the roof right now as I feel it could all be linked get GP saying bloods are fine now. I have never felt like this before and managed well on 100 for as long as I can remember prior to pregnancy.

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29 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Do you have any recent blood results to share with us? They might shine a bit more light on your issues.

Did you get vitamin levels tested as per this reply to your last post a month ago? healthunlocked.com/thyroidu...

Being hypo causes low vitamin levels due to low stomach acid whcih in turn means we can't use the thyroid hormone properly that we take.

Goinginsane1 profile image
Goinginsane1 in reply to Jaydee1507

see attached

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Goinginsane1 profile image
Goinginsane1 in reply to Goinginsane1

see attached

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Jaydee1507 profile image
Jaydee1507Administrator in reply to Goinginsane1

Your FT3 is 33% through the range which is low. You need a dose increase.

Your folate could be improved further with a B complex or active type vitins. Thorne Basic B is recommended here.

What was the ferritin result please?

Goinginsane1 profile image
Goinginsane1 in reply to Jaydee1507

Please see attached

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Jaydee1507 profile image
Jaydee1507Administrator in reply to Goinginsane1

I'm not an expert at iron results but your ferritin is too low and will be making you feel weak, tired and unwell.

Hopefully someone can come along and explain the iron results.

Goinginsane1 profile image
Goinginsane1 in reply to Jaydee1507

how do i increase the ferritin levels?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Goinginsane1

By eating chicken liver pate a few times a week. Adding in liver to your diet and any other iron rich foods.

SeasideSusie profile image
SeasideSusieRemembering

Goinginsane1

Blood test showed over medication so dose reduced back down to 75 one day & 100 the next ) alternating.

This question was asked last time you posted about this but you didn't answer:

What is your GP basing dose adjustment on - just TSH or are you getting full Tsh, FT4 and FT3 testing?

healthunlocked.com/thyroidu...

Do not accept dose reduction based on TSH alone, this is not a pituitary hormone and doesn't tell us our thyroid status, only the FT4 and, more importantly, the FT3 which tells us if we are overmedicated.

SlowDragon profile image
SlowDragonAdministrator

You need FULL thyroid and vitamin testing done 6–8 weeks after any dose change or brand change in levothyroxine

Request GP test full iron panel test for anaemia including ferritin, folate, B12 and vitamin D levels now

Retest thyroid levels (and vitamins) privately if necessary

Goinginsane1 profile image
Goinginsane1 in reply to SlowDragon

please see my attached results in replies

SlowDragon profile image
SlowDragonAdministrator in reply to Goinginsane1

So iron/ferritin definitely needs improving by increasing iron rich foods in your diet

Likely to take several months to get ferritin up at least over 70

Are you currently taking any vitamin D supplement, or daily vitamin B complex

Request note added to all future prescriptions

“No Teva levothyroxine “

Goinginsane1 profile image
Goinginsane1 in reply to SlowDragon

I do not take vitamin supplements.

Yes I will ask but it’s like talking to a brick wall.

SlowDragon profile image
SlowDragonAdministrator in reply to Goinginsane1

Government recommends everyone take vitamin D daily at least Oct to April

nhs.uk/conditions/vitamins-...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with thyroid disease, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

SlowDragon profile image
SlowDragonAdministrator in reply to Goinginsane1

Folate on low side

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

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

Goinginsane1 profile image
Goinginsane1 in reply to SlowDragon

when is the earliest after taking levo I can take a b complex?

I take iron from drs late afternoon on an empty stomach.

I am about to start a basic zinc supplement too. When should I take that?

I take an omega 3 with vit d at lunch and probiotics.

Thanks in advance for any guidance.

SlowDragon profile image
SlowDragonAdministrator in reply to Goinginsane1

when is the earliest after taking levo I can take a b complex?

2 hours

You could take levothyroxine at bedtime

Then can take B vitamins with breakfast

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

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

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

Have you tested zinc levels

Goinginsane1 profile image
Goinginsane1 in reply to SlowDragon

I take mine thyroxine first thing in the morning with water only and always wait at least an hour before eating breakfast.

I take omega 3 and probiotics with my lunch.

I did start taking a b complex for a few days but noticed the backs of my hands kept going tingly so I’ve stopped. I don’t actually know if I need to take it or not.

I am taking an iron tablet 2 hours after my lunch and leaving it an hour before eating anything after it.

I have recently started eating more as I haven’t been eating enough for a long time. Since eating more (healthy but maybe too healthy as eating raw pumpkin/sunflower seeds with every meal and extra wholemeal bread and brown rice and rice cakes. My thyroid was initially starting to improve but then suddenly went over 4.7 and I started with a stomach acid issue which I am still struggling with. Trying to be patient and praying the iron tablets start to work soon and it improves my TSH slightly 🤞🏻

Trying to get a blood test at surgery to check vitamins/mineral but struggling with that 😞

I honestly feel like they are keeping me ill 😭 and the just see the anxiety.

My t4 is high too so if I up my meds that goes up then I get symptoms that comes with a n over active thyroid then. Stuck between a rock and hard place.

SlowDragon profile image
SlowDragonAdministrator in reply to Goinginsane1

Try taking levothyroxine at bedtime

then you can take vitamin B complex after breakfast

Goinginsane1 profile image
Goinginsane1 in reply to SlowDragon

sorry. No I haven’t had my zinc levels checked

SlowDragon profile image
SlowDragonAdministrator in reply to Goinginsane1

Suggest you only take zinc 2-3 times a week

Or test zinc if considering taking daily

Lalatoot profile image
Lalatoot

You need to get copies of your historic blood tests. what were the results for when you felt well and how do they compare with your current results?

For example one of the ranges for ft4 is 10 - 25. A GP will say normal for any result in-between those 2 numbers. But there is a big difference if your result is a normal 11 when in fact you only feel well at a normal 20.

Goinginsane1 profile image
Goinginsane1 in reply to Lalatoot

please see recent results in replies. I will have to find nhs results for prior to these

1tuppence profile image
1tuppence

Have you always received the same brand of levothyroxine? or have you found, like many of us, that the brand has varied over the past year or so?

Goinginsane1 profile image
Goinginsane1 in reply to 1tuppence

I have tried to avoid TEVA but having issues with pharmacy/doctors and keep being prescribed it which I don’t I’ve had before. I’ve tried to avoid it to rule out that being the issue but it’s proving difficult to not get get TEVA brand. So frustrating!!

1tuppence profile image
1tuppence in reply to Goinginsane1

Please see my Post yesterday ? I need one specific brand and went for a face to face appointment with my GP, and together we worked out how to specify on my repeat prescription exactly what I need.. dose of levothyroxine and only MercuryPharma. The pharmacist had told me the brand and dose you need, needs to be specified on your prescription.

SlowDragon warns about changes in brands, and NICE guidelines.

SlowDragon profile image
SlowDragonAdministrator

Also do you know if you have autoimmune thyroid disease also called Hashimoto’s, usually diagnosed by high thyroid antibodies

Have you had thyroid antibodies tested at diagnosis or at any previous test results

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Hashimoto’s frequently goes a bit haywire after hormonal changes (pregnancy, menopause etc)

If you have Hashimoto's it frequently affects the gut and leads to low stomach acid and then low vitamin levels 

Low vitamin levels affect Thyroid hormone working 

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common. 

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 and slowly lower TPO antibodies 

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first 

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

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.

humanbean profile image
humanbean

Regarding your iron/ferritin results :

Iron 8% through range

TIBC 67% through range

UIBC Smidgen above range

Transferrin Saturation Way below range

Ferritin 5% through range

Those results are terrible.

These are optimum results for iron-related results that we suggest aiming for, although we tend to be more specific about the ferritin than suggested in the link :

rt3-adrenals.org/Iron_test_...

.

Iron

Serum iron

• 55 to 70% of the range

• higher end for men

Your result of 8% through range is far too low, suggesting you need more iron.

.

TIBC

TIBC (total iron binding capacity) or Transferrin

• Low in range indicates lack of capacity for additional iron

• High in range indicates body's need for supplemental iron

When optimal results for anything are not specific I usually use mid-range as the desired result if it makes sense to do so. Your result of 67% through range is high enough to suggest you need more iron. Note that lots of things can affect TIBC and it is common for it to be at odds with iron and ferritin, although yours seems to be fairly consistent with your other results.

UIBC - Unsaturated Iron Binding Capacity

According to wikipedia 'The UIBC is calculated by subtracting the serum iron from the TIBC'

I don't know a specific recommendation for this. I think that yours being over range means that you have lots of spare capacity to absorb more iron.

Transferrin Saturation Percentage

Saturation

• optimal is 35 to 45%

• higher end for men

With yours being only 17% you need a LOT more iron.

Ferritin

Depending on source, this is suggested to be mid-range i.e. 90 with your range, or it could be anywhere from (very approximately) 50% - 70% through the range.

Your level of 5% through the range is dreadful suggesting you need more iron.

.

There are no inconsistencies in your iron results - they all say the same thing - you need more iron.

Raising such low levels to optimal could take a very, very long time with tablets. (I had extremely low levels and it took me nearly 2 years to get my Ferritin to mid-range taking the maximum dose of ferrous fumarate 210mg the whole time. My serum iron was still low in range at that stage.)

I think your best bet is to get an iron infusion which will raise your level in just a day or two. Otherwise you are condemning yourself to a long period of feeling dreadful. Having better iron levels will (probably) dramatically improve your tolerance of thyroid hormones.

If I had my time over again I would ask my GP for an iron infusion. If he/she refused I would ask for a referral to a haematologist. If I still got nowhere (or the waiting time was long) I would pay for my own iron infusion to be done privately.

I've never had an iron infusion, but I know some members have had one. You could write a new post asking how they got one, and if it was done privately how much it cost and where it got done. You could ask for advice on costs.And ask if it worked and they felt better.

Since your iron absorption is clearly poor your iron may slowly disappear after infusion. Iron is needed for many processes in the body, and it could get "used up" by delayed housekeeping as a result of the low iron. You should keep doing an iron panel every three months, and if it shows signs of going below optimal again you would need to start taking iron supplements at a maintenance dose.

I mentioned taking iron supplements at replacement dose for nearly two years. I also had to take a maintenance dose for 5 years. When my ferritin levels started rising above optimal I stopped taking iron altogether. Note that I am post-menopausal, and doctors always assume that people like me never need iron. But obviously you are not remotely menopausal since you've recently had a baby.

Did you bleed profusely/haemorrhage during or after labour? If you did, please read this :

en.wikipedia.org/wiki/Sheeh...

.

One other comment regarding anxiety/depression.

I have spent almost my entire life suffering from anxiety and depression. Since I have massively improved my iron and ferritin levels my anxiety has disappeared and my depression is much reduced.

Goinginsane1 profile image
Goinginsane1 in reply to humanbean

thank you for your information!

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