Here we are again!: Hi everyone, Following on... - Thyroid UK

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Here we are again!

jm2450 profile image

Hi everyone,

Following on from the last bloods I had, my GP helpfully informed me that my folate level is fine, even though it is currently 4.7 (range 3.1-20). Does this sound right to you? Because to me that is suggestive that I need to supplement with folate. I have also started having strange symptoms involving tingling, a vibrating patch on my left leg which can go all day and all night, numbness and leg pain. Does this sound like the thyroid to you or the folate?

I have started the vitamin D/K regime. I have had my calcium checked. I have been checked for coeliac which is also negative. I am still under medicated on my thyroxine, levels still 2.8 on 50mcg of Levo. Considering if it’s worth seeing an endo because all my doc is doing now is sending me off for Lyme disease tests and god knows what else. Probably MS next. When I wonder if this is literally just linked to folate and not enough Levo?

Can anybody shed some light? I am still battling with them and I am fed up. I am considering finding a new GP as nobody is listening. Is there any way I can try more Levo by myself?

Thanks in advance.

84 Replies
SlowDragon profile image
SlowDragonAdministrator

Vitamin D – 20 nmol/L (50-200) – DEFICIENT

Folate – 3.62 ug/L (3.89-19.45) – Slightly low

Vitamin B12 – 115 pmol/L (37.5-150) – Normal

Ferritin – 151 ug/L (13-150) – Slightly high

TSH – 2.86 mU/L (0.27 – 4.2) – Within range

Free T3 – 4.45 pmol/L (3.1- 6.8) – Low end of range?

Free Thyroxine – 16.9 pmol/L (12 – 22) – Middle range normal?

Thyroglobulin Antibodies – 267 IU/mL (should be less than 115)

Thyroid Peroxidase Antibodies – 220 IU/mL (should be less than 34)

See different GP or endocrinologist

Or try email/letter to GP with NHS guidelines that dose levothyroxine should be increased slowly upwards in 25mcg steps until on roughly 1.6mcg per kilo of your weight per day. TSH should always be under 2

You’re in desperate need of next dose increase in levothyroxine

How much vitamin D has GP prescribed?

Vitamin D needs retesting at end of the course

You will need ongoing maintenance dose every day

Trial and error what dose is. Likely to be at least 2000-4000iu per day. Might need more in winter than summer

jm2450 profile image
jm2450 in reply to SlowDragon

Yes coeliac blood test has been done and I am negative. Vitamin D is a very high dose for ten weeks then maintenance dose, I will be retesting after 10 weeks although it’s already gone up from 20 - 40 in last two weeks so something is happening. My B12 and Iron are both fine.Would you suggest starting folate supplement even though my GP says it’s fine and I don’t need it?

I am scheduled for a callback from my GP on Tuesday. Do you think these nerve symptoms could be because I am under medicated? Because they are saying no as usual!

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

FT4: 16.9 pmol/l (Range 12 - 22)

Ft4 only 49.00%

FT3: 4.45 pmol/l (Range 3.1 - 6.8)

Ft3 only 36.49%

Yes, you’re under medicated

Improving low vitamin levels should improve conversion rate

Most people when adequately treated will have Ft4 and Ft3 at least 60% through range

Are you on Accord brand levothyroxine?

Accord don’t make 25mcg, so will need to cut some in half to get 25mcg

Request GP give you a TRIAL increase in levothyroxine to 75mcg per day.

Request GP increase the number of 50mcg tablets per month and that you will cut them to give 25mcg so you can remain on Accord brand

As you have been left under medicated a long time….increase slowly…….Initially increasing to 50mcg and 75mcg on alternate days

Then after 6-8 weeks retest

Approx how much do you weigh in kilo

jm2450 profile image
jm2450 in reply to SlowDragon

I already know that my weight is a factor in being under medicated, I am around 100 kilos so the GP knows full well that 50mcg is not enough! Yes I am currently on Accord so I will do as you advised with the tablets, if I get anywhere!

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

If GP still refuses to increase dose levothyroxine , you will need to go elsewhere

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

jm2450 profile image
jm2450 in reply to SlowDragon

Dragon, is all of this that I have written factually correct? I don’t want to send it before I know that what I have said is all correct -I have been experiencing a vibrating pain in my lower left leg on the front for around a month, accompanied by pain and muscle twitching and spasms. I also intermittently get pins and needles in my hands, feet and occasionally the feeling in my face. As these are all symptoms of being hypothyroid, I would like to increase my dose of Levothyroxine to 75mcg from my current 50mcg. I am a 100kilo woman, I have been on 50mcg for a year which is a starter dose, and guidelines state that Levothyroxine should be 1-1.4mcg per kilo, so I feel I am already vastly under medicated for my weight alone. Alongside this, these symptoms of being hypothyroid have crept back slowly over the last year, and I feel that my TSH being at 3.0 is not acceptable. When being treated with Levothyroxine, guidelines all over the world state that patients should be 2.0 or under, preferably closer to 1.0. My free T4 and T3 are also very low through the ranges, 49% and 36% which is indicative that I need more thyroxine. I am asking for a trial on a 75mcg dose. I don’t feel I should be living with pain and symptoms as I am.

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

Suggest you print out list of hypothyroid symptoms here

Tick all that apply and include in letter

thyroiduk.org/wp-content/up...

Plus NHS guidelines

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/files/docs/...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

Muscle twitches can be low magnesium

If not already supplementing magnesium, something to consider taking

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

jm2450 profile image
jm2450 in reply to SlowDragon

Hi Dragon, following on from this post the other day, I have managed to get an increase in Levo to 75mcg. Would you recommend starting with alternating 50 and 75? Do I do this until my next blood test in 6-8 weeks to see where I’m at? Thank you for all your help!

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

Have you got same brand levothyroxine as previous

Yes perhaps increase on alternate days, or cut 25mcg tablet in half to add to 50mcg to give 67.5mcg every day

See how that is ….if no adverse issues, consider increasing to 75mcg after 2-4 weeks

Meanwhile working on improving low vitamin levels at same time

jm2450 profile image
jm2450 in reply to SlowDragon

I think I have got all 50’s as still on Accord. So I’m not sure how I would work that, does Accord actually do 25’s?

Lalatoot profile image
Lalatoot in reply to jm2450

You can split a 50mcg tablet.

jm2450 profile image
jm2450 in reply to Lalatoot

Yes I will do for 75, but as dragon is suggesting starting with splitting a 25 and adding it to 50 I’m not sure I would be able to do that!

Lalatoot profile image
Lalatoot in reply to jm2450

I use a pill cutter I bought in the local chemist. Manged to split 25s.

jm2450 profile image
jm2450 in reply to Lalatoot

I know but Accord only do 50’s and 100’s….. I’m guessing I wouldn’t be able to split a 50 and then split the half of 50, way too much pill cutting!

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

No Accord don’t make 25mcg tablets

Cut in half to get 25mcg….and cut into 1/4’s to get 12.5mcg

Using sharp craft scalpel or pill cutter

Make sure to mop up any crumbs with damp finger

(Good practice if you ever get T3 prescribed…..tiny 20mcg pills that have to be cut into 1/4’s to get 5mcg )

Alternatively you could try Wockhardt or Mercury Pharma 25mcg tablets

jm2450 profile image
jm2450 in reply to SlowDragon

It might also be worth noting that in my recent electrolyte test, my potassium level was 3.4 (range 3.5-5.3). I am trying to get my potassium intake up, but that was the only other thing flagged up as being slightly under.

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

A banana daily should help

SlowDragon profile image
SlowDragonAdministrator

Low folate

NHS only tests and treats deficiencies

Down to you to self supplement

Rather than just taking B12

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

This can help keep all B vitamins in balance and will help maintain B12 levels too

Hashimoto’s patients are often low in B1 Thiamine, vitamin B complex supplies all necessary B vitamins

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 or Jarrow B Right are recommended options that contains folate, but both 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, taking a separate folate supplement and separate B12 supplement instead

jm2450 profile image
jm2450 in reply to SlowDragon

I am worried about taking B complex to be honest, as my B12 is quite high and I don’t want to push it over! Would you recommend folate by itself? I have seen some folate by itself supplements (not folic acid)?

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

Stop the separate B12

Vitamin B complex has less B12 in it

It’s important to take all the B vitamins together. Not one on their own

jm2450 profile image
jm2450 in reply to SlowDragon

I’ve been taking a low dose of B12 for a while, 250. And I haven’t been taking it now for a month and my B12 is still high, my serum B12 is currently 822ng/L (range 187-883) active B12 is Vitamin B12 – 115 pmol/L (37.5-150)

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

Yes that’s typical. It would take 4-6 months for B12 levels to test low

B vitamins are water soluble so we pee out excess

All vitamin B complex will tend to turn your urine bright yellow

jm2450 profile image
jm2450 in reply to SlowDragon

So if I did take a B complex with B12 in it won’t be too much? I didn’t know that Bs were supposed to be taken together. I have only taken B12 for the past year but no other B’s. Obviously I am in need of some folate though

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

All B vitamins need each other and they also need good vitamin D levels

Anyone low in vitamin D tends to have low B vitamins.

drgominak.com/sleep/vitamin...

Buddy195 profile image
Buddy195Administrator in reply to jm2450

As my B12 is already high in the range (& has been over range previously) and my folate is much lower, I’m currently taking a B complex (Thorne Basic B) 2-3 times a week and a separate methyl folate on other days. I’m planning to retest in 6-8 weeks.

jm2450 profile image
jm2450 in reply to Buddy195

That sounds like a sensible idea. Maybe I can adopt something similar. Do you find that specific B complex okay?

Buddy195 profile image
Buddy195Administrator in reply to jm2450

Lots of members of the forum do well with Thorne Basic B. However, as my B12 has been high, I can’t take Thorne Basic B every day as I go over range. SeasideSusie recommended I took a separate methyl folate on other days to try & get folate optimal.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Buddy195

Buddy195

However, as my B12 has been high, I can’t take if every day as I go over range.

Is that your Total or Active B12 that goes over range?

My Total B12 is always way over range, eg 849pmol (145-569) which equates to 1150pg/ml whereas around the same time my Active B12 was 162 (37.5-188). I don't worry about the Total B12 being high because it's the Active B12 that is free and available to be taken up by the cells. And who knows what gets into the cells - that isn't tested :)

Buddy195 profile image
Buddy195Administrator in reply to SeasideSusie

It’s my active B12 that went over range when supplementing daily with Thorne Basic B. I’ve not taken a separate B12 to affect this. As it’s now near the top of the range, I just take the B Complex 2-3 times a week & the separate methyl folate in between.

helvella profile image
helvellaAdministrator in reply to Buddy195

Is there an issue with B12 being over-range?

Bear in mind two things:

Those on regular injections, especially if frequent, are often permanently over range.

Many of the warnings about over range B12 concern issues other than supplementation. Where some health issues result in high blood B12 due to damage releasing stored B12. That has often been misinterpreted as a problem in having high B12 - rather than high B12 (without supplementation) being an indicator of a problem.

jm2450 profile image
jm2450 in reply to helvella

That’s a fair point. I suppose I’m just wary of over supplementing anything as it can cause just as much damage as being deficient, but then I’m not an expert or scientist so I can only go by how I feel I guess.

helvella profile image
helvellaAdministrator in reply to jm2450

In general, I think caution is vitally important. Far too many glug huge quantities.

But for B12 specifically, I have yet to see any condition resulting from high B12. Other than in the rare cases of cobalt sensitivity.

jm2450 profile image
jm2450 in reply to helvella

That is good to know. Interestingly, my nerve symptoms seem to have come up only since I stopped my b12 supplement. I stopped it because I was concerned about going over range after seeing results. But maybe there is something in what you’re saying.

Buddy195 profile image
Buddy195Administrator in reply to helvella

I think my active B12 was only flagged as over range when Medichecks changed to provide a range with an upper limit. Before this, it was never flagged. You are right though, neither GP nor endocrinologist seemed concerned that my readings went over range.

jm2450 profile image
jm2450 in reply to Buddy195

Do you feel that the current numbness, pins and needles, vibrations can be linked to not having enough thyroxine?

Buddy195 profile image
Buddy195Administrator in reply to jm2450

May be linked to both low thyroid levels and low folate. Interestingly. I also get pins & needles/ numbness with over range thyroid levels too; that’s why I recheck T3/ T4 and key vitamins if adverse symptoms arise.

jm2450 profile image
jm2450 in reply to Buddy195

So when your TSH is too high for you you also get the numbness and pins and needles etc, is that what you mean? My T3/T4 aren’t through the range enough either, probably because of my chronic undermedication and vitamin deficiencies, I am tackling the vitamin deficiencies now but tackling the Levothyroxine dose increase seems to be the most important next step for me.

Buddy195 profile image
Buddy195Administrator in reply to jm2450

My TSH is suppressed as I’m on combination treatment (ie Levothyroxine & Liothyronine). I’ve had pins & needles & numbness when on too high a dose of Levothyroxine & my T4 went over range. The sweet spot for thyroid medication & vitamin levels is different for us all.

jm2450 profile image
jm2450 in reply to Buddy195

I see what you’re saying. Well my TSH definitely isn’t suppressed at 3.0! So I’m obviously at the other end combined with the vitamin deficiencies.

SlowDragon profile image
SlowDragonAdministrator

Gluten free diet

Hashimoto's 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

As your coeliac result is negative you can now Try 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

pubmed.ncbi.nlm.nih.gov/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

Of course your GP thinks your folate is ok. It’s in range. Hurrah. Get yourself some 400 mcg methyl folate available OTC and try to get folate to about mid range.

You've received excellent replies already, but based entirely on my own experience, I would forget all about your B12 levels being high, and supplement with a good methyl B complex with high folate, until levels are optimal, and you are symptom (or at least tingle) free. Vitamins and minerals don't work in isolation, and thyroid meds don't work properly when deficiencies are present. B12 needs folate to work properly, and you will likely be low in all the B's anyway.

Before I found this excellent forum, I had slightly below range folate for 20 years, which neither my GP nor assorted specialists had bothered to tell me about! I made the discovery (along with other gems) when I obtained my medical notes. I had been on a high dose of Levo for 25 years, but it wasn't working for me. My B12 levels had always looked 'fine' according to the NHS ranges.

I suffered severe neurological damage which was put down to a variety of other things. It began with the tingling, which I'd had for years, progressed to internal tremours, and ended with violent shaking and head nodding. I was a mess, and had to use a baby's beaker. When Vit D was eventually tested, it was 4, and I'm a sun lover! I was given Vit D injections which did absolutely nothing, and I couldn't absorb the Vit D capsules prescribed by GP...they caused terrible stomach pain, and barely raised my levels. I was saved in that regard by Better You D+K2 spray, which avoided the gut, and magnesium powder.

Then B12 spray and Jarrows sublingual B12, along with replenished folate got rid of all my neurological symptoms. I also discovered had to take extra thiamine with my complex at first, but it all seemed like a miracle. I have also changed my thyroid meds, given up gluten to help my gut absorb nutrients, and I feel well. If only I'd known all this before! You are obviously under medicated, and need an increase, but I would look into restoring nutrient levels first, and then increase slowly, going by how you feel, which is the most important thing. Good luck 🍀

jm2450 profile image
jm2450 in reply to Mamapea1

Wow, thank you so much for your response! I have not known that I was on the low end of folate, or that I was vitamin D deficient and that could have been for god knows how long. I have read about absorption and also favour sprays and sublingual which seem to work for me in terms of getting into my body. So in your opinion, I should try the B complex even and ignore my B12 being on the high end? I am slowly getting my D levels up now but haven’t started folate yet as was advised to wait a week or two when starting everything. I have a b complex ready and folate sublingually as I hadn’t decided whether to just go with folate or a complex. It’s interesting that you think the vitamin levels should come first before the Levo increase. I suppose the problem is that at the minute I can’t tell what is because of the vitamins and what is because of the Levo/thyroid! I really appreciate your comment, thank you!

Mamapea1 profile image
Mamapea1 in reply to jm2450

Yes, I definitely think you should start the methyl B complex, but I also agree it's best to leave a gap when adding or increasing anything, otherwise it's difficult to tell what caused what! Unfortunately, patience is the name of the game with thyroid issues, but as you're already on this forum, you won't have to wait as long as me! 😊

It's confusing because without adequate thyroid replacement, it's difficult for the body to utilise the nutrients, but it also works the other way, the thyroid hormones don't work properly without the nutrients! On the whole, I personally (others may disagree) think it's best to deal with the nutrients first, because it's getting your body in the best possible state to deal with the Levo and it gives you a better chance of being on the correct dosage.

Then you can be confident (as best as you can) that any further symptoms or problems are due to the medication, and you can then alter that accordingly. My own experience was perhaps extreme, but it made me realise just how important nutrients are, and I am very careful to keep them in line now. Despite not having much of an appetite, I had a really good diet, so I didn't think I had a problem.

I gave up with Dr's on this subject long ago, and test myself privately via Medichecks. Most GP's don't understand anything about deficiencies or thyroid disorders, and I ran out of energy trying to explain myself! 🙄

jm2450 profile image
jm2450 in reply to Mamapea1

Can I ask if B complex’s are safe long term? I have a bit of a weird history with anything “multi” based and often have a high sensitivity to it all going in at once (which is why I tend to supplement with one thing at a time). I have often felt spacey on any type of multi so I am careful when supplementing. Do you think that if I just start with folate and B12 it’s sufficient to see how it goes or would a complex really be best? Yes, I completely am at that level after just a year of this journey, sick of trying to talk to/explain things to my GP and I honestly feel that keeping a watch on my own health and vitamins etc will be the way I go because it seems that they don’t really have a clue! I am so glad you found your own answers are you’re feeling well again :) It does give me some hope!

SlowDragon profile image
SlowDragonAdministrator in reply to Mamapea1

I had similar disastrous 24 years on just levothyroxine before I joined the forum

Got full private testing done

Got hold of historic test results by registering for online access

That was an eye opener….

vitamin D was 12nmol (never told had even been tested nor prescribed anything)

Ft3 when ever tested was way below range….

(I was stuck in wheelchair or bed bound)

Interestingly my B12 was always ridiculously high, yet I had numerous low B12 symptoms.

I now understand that we need good levels of all B vitamins in order for them all to work.

Starting on vitamin B complex (despite high B12) was an astonishing improvement

Paradoxical B12 deficiency

b12oils.com/paradoxical.htm...

Mamapea1 profile image
Mamapea1 in reply to SlowDragon

An excellent link about paradoxical B12 def SD ~ thank you. Yes, that's exactly what I had too. I learnt a lot from the B12 forum as well as this one, and thank God I found them both. I was about to give in and buy a mobility scooter, as I'd been unable to walk unaided for so long, and was getting much worse with the arrival of the terrible tremours. The last of my live-in daughters was going off to uni, after waiting for two years. The others that lived nearby had to do everything for me. I was in constant pain and often bed bound.

My B12 level was a bit low, but was never under range. I also failed to have my vitamin D level tested...GP always refused, and convinced me it was unnecessary and irrelevant. It wasn't just the GP though. I was seeing many 'specialists' for the various ailments they had diagnosed me with. So many invasive tests and hospital appointments over the years, yet not one of them joined the dots about nutrients and thyroid meds. I had four of the conditions on that list in your link. Like you, I lost many years of my life to their ignorance. You live and learn.

jm2450 profile image
jm2450 in reply to Mamapea1

It’s amazing really as my GP again told me yesterday during our discussion about my pins and needles/numbness in legs/feet that it 100% would not be related to vitamins as I’m not even deficient in folate 😂 he also said that having 4.7 of folate was the same as having 15! I was thinking okay but doesn’t 15 mean there’s a much higher concentration? Anyway; all he was going on about was squashed nerves. Which yes, it could be, but to completely disregard my folate level as it’s within the range is ridiculous.

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

NHS only tests and treats confirmed vitamin deficiencies, down to us as individuals to self supplement to improve levels to optimal

When hypothyroid that usually means daily vitamin D, magnesium and vitamin B complex supplements

Possibly separate B12 as well for a few people, especially initially

Occasional selenium, zinc

Possibly iron, but not necessarily and retest full iron panel 3-4 times year if taking iron

jm2450 profile image
jm2450 in reply to SlowDragon

Yes I can see that’s how they work now, they didn’t even prescribe me with a decent amount of vitamin D so I’m self supplementing with that too. Appalling. The best line that came out of his mouth though was probably “well no, we can clearly see you’re in the normal range for your thyroid but probably best to try and get you optimal now”. I was like, sorry? So why haven’t you been trying to do that regardless of being in “normal range”? Why is “normal” acceptable and optimal is only strived for when pushed to a hard degree!?

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

Exactly

Similarly….if we do get tested for coeliac…invariably the test is negative as only 5% test positive for coeliac

But about 80% of autoimmune thyroid patients find strictly gluten free diet helps or is absolutely essential

But NHS medics rarely ever impart this info to patients

jm2450 profile image
jm2450 in reply to SlowDragon

I got a negative coeliac test but I am considering trialling a gluten free diet for this reason

Mamapea1 profile image
Mamapea1 in reply to jm2450

Well I don't know what he means about the numbers there 😳 but I no longer find their lack of knowledge shocking, as it seems to be widespread throughout medical profession. Look how many members post for help on here each day! Yes, of course it could be lots of things, but let's deal with the most obvious first, based on how the body actually works...something they seem to know little about, unfortunately. There's no money in vitamins for them.

I put a lot of misplaced trust in my Dr. She was also a friend, as our children went to school together, but I dumped her anyway, after reading my medical notes! I think it's appalling how we're treated with chronic conditions. I genuinely feel I owe my life to this forum, which I found by pure chance...I had stopped looking for answers, and believed I was doomed with a myriad of conditions, just like my mother 😕

My previous GP had been brilliant...very old school and knowledgeable, but he retired just before I got ill, sadly. I feel the GP's like him who were actually concerned with getting patients well are now a thing of the past, but maybe I was just lucky with him, as my mother suffered similar health conditions, (actually worse) and her many Dr's didn't join the dots either! It upsets me that I didn't know anything when she was alive that may have helped, and also for my poor dad, who ended up on enough unnecessary prescription meds to sink a battleship!

Hopefully I have now shared enough knowledge with my own children that it won't happen to them, although my youngest daughter is having a battle to get diagnosed as hypo, despite producing Medichecks tests confirming it, and having all the symptoms for years. She has been through 5 GP's so far, from various parts of the country, and they've only ever tested TSH, which is at the top of the ridiculous range. They've given her loads of unsuitable prescriptions, but won't accept the private, more comprehensive tests, so she is now in the process of choosing a private Dr. What a life!

Of course some meds are essential, but GP's are too quick to diagnose a 'condition' and prescribe them, and thyroid conditions have so many symptoms, it leaves the door wide open for this. They get very little training in thyroid, yet for the patient, mistreatment can have dire consequences.

I hope you have restarted your B12 and the complex works for you soon in getting rid of your neurological issues. I was told my initial pins and needles/tingles were due to poor circulation, especially as I was always cold! *sigh* I still have constant tinnitus from the lengthy B12 deficiency, for which I'm still searching for answers, but I've had it for so long I'm used to it. So annoying that it could all have been avoided though. At least you're in the right place to get well 🌻🐝

jm2450 profile image
jm2450 in reply to Mamapea1

I am so sorry to hear all of that mamapea and the appalling things your daughter is currently going through. I have a 9 year old son and luckily no symptoms (although he can get quite down sometimes which I worry about) but if anything did start showing up I would go private straight away given my current and previous experience with doctors. As long as I can remember - probably since around my son was born I have been going back and forth to the doctors with various things. When I look back now I wonder how long this has been going on for? In 2018 my TSH (all they tested) was only 1.9 but my psychological symptoms were insane. I went into a severe anxiety and depression - so much so that I thought I was about to be sectioned and lose my mind. Panic attacks, which I hadn’t had since my early 20s, funnily enough though I went through a similar time in my early 20’s with psychological symptoms. I was convinced I was in early menopause - I also have PCOS which was only diagnosed just before my thyroid despite NEVER having a regular period EVER in my life. I wonder if I have had thyroid antibodies for a lot longer than before my “symptoms” started showing up. I still struggle with anxiety daily. So sometimes I convince myself that the symptoms I’m feeling are not real and it’s my anxiety - which I have been told over and over again for years. But it’s not true I cannot manifest numbness and tingling in my legs and feet and joint and muscle pain and aches simply by being anxious alone. I really hope you get some answers for your daughter, it must be so tough to be so young and dealing with all this. I am 36 years old and some days I feel about 80 mentally and physically. God knows how long my vitamin d was at 20. I just dread to think.

SlowDragon profile image
SlowDragonAdministrator in reply to jm2450

I was told all my symptoms were imagined/anxiety…..that pins and needles was definitely anxiety …of course it was nothing of the sort

you might find my profile info helpful

jm2450 profile image
jm2450 in reply to SlowDragon

I think most things in my life have been attributed to anxiety, I guess having underlying endocrine problems probably since I was a teenager isn’t a good enough reason to experience these psychological symptoms….. I will have a look at your profile info!

Mamapea1 profile image
Mamapea1 in reply to jm2450

I believe there is an association between thyroid conditions and PCOS...another daughter seems to have that, and we're looking into it! You could search on healthunlocked for clues. TSH is useless on its own, and how they don't know that is beyond me! I had really heavy periods as a teenager, which I realise now should have been an alarm bell for hypo, but in those days the pill had just come out, so with my mothers permission, I was put on it to control the bleeds.

They hadn't refined the levels of oestrogen/progesterone, as it was a new thing, so I stayed on huge amounts of oestrogen for 5 years. I felt fine, with a great appetite and full of energy. Then when I was 18, I changed Dr's (to my brilliant one) who was appalled to see what I was taking, and advised me to stop before I developed blood clots! So I stopped, and indeed did get a blood clot in my leg and ended up in hospital. I fared better than another girl who was also taking them, as she had a stroke, and still limps around town with no control of her left side 😔 I recovered well, but was told I could never take the pill again.

There are so many reasons why you could be genetically predisposed to having thyroid problems, and there are many women in my own family with AI conditions, (my mum and 6 of her sisters) so I feel it was always a possibility for me.

It was actually the sudden onset of panic attacks that initially alerted me to my youngest daughter's hypo...then came all the rest of it! Depression and anxiety can be a low T3 symptom, but we're usually just offered antidepressants, which don't tend to solve the problem, and sometimes do more harm 😕

jm2450 profile image
jm2450 in reply to Mamapea1

I am definitely genetically predisposed to autoimmune problems. My mum has psoriasis and lichen sclerosis and I’m guessing her fingers are starting to curve because of some type of arthritis. Both my aunties have severe rheumatoid arthritis, one also fibromyalgia, other side my gran had severe rheumatoid arthritis, diabetes, you name it. My grandad had Parkinson’s and sadly died when he was 69, which I know isn’t autoimmune but is another worry about my genetics (I know it’s not hereditary as such). I think there are a lot of undiagnosed problems in my family, my mum has always said she was told she had “borderline” thyroid problems. She hasn’t been tested since for her thyroid. She is up and down like a yo-yo though and I wonder if there’s more going on. My auntie with RA and fibro is currently trying to get thyroid problems diagnosed, she’s convinced she has it. I thank god I have never taken a contraceptive pill for longer than a month, or used any other contraceptives. I found out during that short lived time on the contraceptive pill that it turned me into a completely different person, it was intolerable to the point that I refused all hormonal contraception after that point. There is definitely a link between PCOS and thyroid problems, apparently a large percentage of people with PCOS go into develop thyroid problems. Of course, the only way they treat PCOS is with hormonal contraception, so I’m not sure that they would have offered me any better options regardless of when I’d been diagnosed with it. I was clearly fertile as I easily got pregnant with my son, but I had lost a lot of weight before I got pregnant.

Never had panic and anxiety like it mamabean. I could barely leave the house, I felt paralysed. I now think that that time was my massive warning sign that my thyroid was on it’s way to giving up, and that my thyroid was being attacked by my immune system. I had given up smoking around the same time, so I attributed quitting smoking to the panic attacks. It’s all very convoluted I know! How old is your daughter who is currently dealing with these issues? Even when they diagnosed my thyroid issues they didn’t test my T3, and NHS still haven’t. I only found out and now will monitor my T3 myself through private testing. Even now my T3 is only 4.45, may need to come up a bit, hopefully bringing vitamin levels up will help with conversion as slow dragon mentioned on here.

Mamapea1 profile image
Mamapea1 in reply to jm2450

My youngest daughter is 24, but this has been going on for years. I became suspicious when she was in sixth form at school, even before. Of course GP put it down to 'exam stress' as she was doing her A levels. She never had exam stress, as she's an absolute boffin and she loves it! 🙄 It sounds like you were destined for thyroid problems too, but it's easy to sort out once you get on the right track...just time consuming. I was so relieved when I started reading all the links on here. It was hard to take it all in at first, as my brain was so foggy, but I got there, and have never looked back.

My daughter at least keeps her vitamins and minerals optimal, and that has really helped her through it, but she needs a proper diagnosis for her medical notes. Then we will go our own way, and treat according to the symptoms, not the TSH! She has so many symptoms though...her panic attacks were terrible too, as were mine, and I'd never had one before, despite going through a lot of stress.

Giving up smoking has an effect on the thyroid too, so that's probably why you noticed it. It's like a minefield! The stress involved in trying to get the NHS to test T3 is simply not worth it. Better to pay for your own tests and post for advice on the results. I don't bother them for anything anymore...my brain hurts when I talk to them😂

Well, multi vitamins are usually a bad idea, as they are often poorer, cheaper versions, and are usually in a mix that doesn't go together and can't be absorbed properly, but a good quality methyl B complex should be fine. Of course we're all different, and hopefully you can find one that suits...you may find you're not so sensitive when thyroid levels improve. You could take them individually, but that seems like a bit of a mission! I do think a separate thiamine might help with your tingles though, as there's a link with low thiamine levels and low T3.

You won't need to take everything daily forever...I don't need to take a B complex every day now, and just take it 2 or 3 times a week at most, but it was fine daily at first, until folate, etc were optimal. I still take B12 every day, and D + K2 if I haven't had a good day in the sun! Magnesium has proven to be a necessity too. I take other things on occasion as needed...my house looks very much like a Revital store! 😂

jm2450 profile image
jm2450 in reply to Mamapea1

I bet it does! Mine is beginning to look that way as well 😂 I suppose if I start with a B complex and see how I get on it can’t do any harm, and if I don’t get on I will switch to only folate and B12 separately. I have had to create a reminders list with times on my phone to ping me every day so I can take everything at the right times! I really don’t want to be doing it forever but I wonder how I will know when to stop the B complex…. Is it just when my folate and B12 test optimal together? As I haven’t had any other B vitamins tested so not sure if I am low on others or not. Seems that they are all so expensive to test separately and I haven’t found anywhere that does a full B vitamin test for all of them!

Mamapea1 profile image
Mamapea1 in reply to jm2450

When you get levels of everything recommended on the forum optimal, things will probably be fine, but I would still keep reading up on all the possible effects of individual deficiencies, so you can recognise any symptoms you may develop going forward. It's a lot of reading, but well worth it, and that's how I managed to join the dots and fine tune the many things that had gone horribly wrong for me. It's still a work in progress, and I seem to have a huge library of books on the subject now! I watched a lot of videos too. There are excellent links throughout this forum and book recommendations to guide you, or just keep posting for help and advice. Good luck with the B complex! 🌻🐝

jm2450 profile image
jm2450 in reply to Mamapea1

Thank you so much mamapea! You have been really helpful and reassuring that my body is not actually completely broken 😞 I will take your advice on board and start sorting my B’s out!

My serum vitamin B12 level has been over 2000 ng/L quite often.

My Active B12 has been > 256 pmol/L on occasion.

I prefer to keep my folate levels at a level of 15 - 20 mcg/L. I have seen some reference ranges for folate which have an upper limit of around 60.

Patients and doctors have been conned into believing that folic acid and folate are basically the same substance, but they aren't - folic acid was developed for the first time in 1943. No human had ever taken it before then. Folic acid has to be converted into methylfolate before the body can use it, but some people (and it is quite common in people with thyroid disease) can't do that conversion. So, we sometimes see people who come onto the forum with really high levels of "folate" in a test, but the likelihood is that it is unmetabolised folic acid and that person might be in a state of folate deficiency. Since the body needs folate in order to make use of vitamin B12, they might also be in a state of low B12 or B12 deficiency, no matter what their B12 level says in a test.

takecareof.com/articles/ben...

Symptoms of B12 and folate deficiency :

b12deficiency.info/signs-an...

b12deficiency.info/folate-b...

Please open ALL the sections on both of those links - the pink circles with a minus sign in, and also follow the arrows to other pages.

The effects of improving both my B12 and my folate have been very good from my point of view. I started getting spots when I hit puberty and they never went away. When I first started raising my B12 levels my spots actually got worse for a couple of months, but I didn't realise the connection with the methylcobalamin and the methylfolate at the time but then, miraculously, my spots vanished and now I don't get them any more unless I allow my B12 levels to drop.

I had the same magic improvement with eczema too. That also started around the same age as the spots.

In all, I'd had spots and eczema for about 45 years.

humanbean profile image
humanbean in reply to humanbean

Some links you might find interesting, from a Dutch website, but the links are to articles in English :

stichtingb12tekort.nl/our-e...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/weten...

humanbean profile image
humanbean in reply to humanbean

If you want information on other vitamin B deficiencies particularly on vitamin B1 (thiamine), then this website is worth having a look at :

hormonesmatter.com/

There are nearly 200 articles on thiamine.

jm2450 profile image
jm2450 in reply to humanbean

Very interesting thank you humanbean, I will be reading the links. Re folate level, I have never taken folic acid, so obviously I will be taking B complex with folate in and not folic acid. But it seems that getting my folate up may help a lot with my symptoms, and keeping my B12 up instead of being lead to believe that I shouldn’t be supplementing with it.

humanbean profile image
humanbean in reply to jm2450

I have never taken folic acid

If you eat breakfast cereal you probably have taken folic acid. It is frequently added to many common foods, but you have to check the labels.

Fortification with folic acid isn't mandatory in the UK, it's optional :

en.wikipedia.org/wiki/Folat...

jm2450 profile image
jm2450 in reply to humanbean

Ahhh yes very true! Ok so I have taken folic acid but not in supplement form!

Mamapea1 profile image
Mamapea1 in reply to humanbean

Very well explained HB. My B12 levels are sometimes that high too. Interesting what you say about eczema, which I suffered with since a child, (along with various sensitivities) and it has gone for me too. I was unsure whether it was the T3 or the B12. Either way, I'm happy to be rid of it 😊

humanbean profile image
humanbean in reply to Mamapea1

In the first 15 years or so that I had eczema (mainly on my wrists and hands) it would crack and bleed a lot. Not only that it was insanely itchy and would drive me mad.

This was the kind of eczema I got :

en.wikipedia.org/wiki/Dyshi...

.

Mamapea1 profile image
Mamapea1 in reply to humanbean

Well that's interesting...I had small itchy blisters just like that on occasion, when the skin on my hands had got very dry, or I had been washing up without gloves or touching metal. I seemed to be allergic to skin contact with all metals except pure silver and gold. Nickel was the worst by far, but anything could do it. Getting my hands in the sun for a while always helped, although they itched initially. I can still tell the quality of pieces of jewellery by simply holding them in my hand! If I put them straight back in the tray, my daughters won't buy them 😂

tattybogle profile image
tattybogle in reply to Mamapea1

Other wise known as 'Pompholyx' . i get it too . turns out more than a few of us on here have it .. some are on here at the end ~ healthunlocked.com/thyroidu... and there were about another 8 people on another post but can't remember where now .

Mamapea1 profile image
Mamapea1 in reply to tattybogle

That's interesting ~ thanks tatty. I'll have a read when I get home...just off out shopping atm.

Mamapea1 profile image
Mamapea1 in reply to tattybogle

Ah I must've somehow missed that amusing thread. I didn't know what it was actually called. Interesting what was said about the gold ring too. I wear my mums ring, but she would only ever have platinum jewellery, although she never said why, so I don't know if she had the problem, or was just trying to be posh😊

I love silver...for years I've always had at least eight rings on my fingers, and four on my toes. Has no effect on me at all, and I'd feel weird without them. I dislike most other metals in general though, and can't bear the feel of them. I used to suffer badly with the metal buttons on jeans. No matter what I painted or covered them with, I would always end up with an unsightly blistered stomach, which itched like mad for ages.

tattybogle profile image
tattybogle in reply to Mamapea1

that's interesting , my mum had a platinum wedding ring too, and she would never wear her other ones that were gold ,, i always assumed she just didn't like the colour , but perhaps not . ....... it was a couple of trainee GP's who told me it was called pompholyx... they looked very exited they'd diagnosed it and went to get the proper GP to confirm their amazingly rare discovery ...... turns out it's not so rare on here.

Mamapea1 profile image
Mamapea1 in reply to tattybogle

Yes and a strange coincidence about the platinum. Mums wedding ring is the only platinum thing I wear all the time, and I must admit I do love the feel of it, and it goes nicely with my silver stuff. I can see where she was coming from! 😊 I'm glad I now know the name of it, even though I don't have it as bad now. Not that I'm gonna test that with any horrible metals or chemicals! Did you ever try the Life-Flo B12 cream that was recommended on that post? I'm thinking of ordering some.

tattybogle profile image
tattybogle in reply to Mamapea1

No i stuck with my Dermol 500 lotion cos it works ok for me. Curiously this last year ~ no sign of it at all.. has vanished completely for the first time in decades.... you just wait , now i've said that out loud ~ it will come back .....

Mamapea1 profile image
Mamapea1 in reply to tattybogle

Well it just sounded like something that would suit me, so I think I'll give it a try...nothing ventured, and all that. Haha! Yes of course ~ it'll be back in a flash! 🙊 Hopefully not though. Mine is very much improved, too...no blisters, but dry skin persists if I don't take care of it. The things I suffered with before T3 + supplements! I think I'll make a list and stick it on the Dr's surgery door! And it'll have to be a big door!😂

Jazzw profile image
Jazzw in reply to tattybogle

Ooh, thanks for the share, Tatty. I know I’m late to this party but my Medichecks tests came back today with my folate levels at 5 point something and I was having a good look around to see what wise folk had said about folate supplementation. And then found this thread. :)

I get Pompholyx too! Haven’t had it on my fingers in a while, thought it was just me who got it on the soles of my feet (and sometimes at the back of my toes). So glad to know that’s not just me being weird! I wonder if the fact my B12 levels are quite decent at the moment (for me, anyway) is the reason I haven’t had any of those delightful itchy blisters on my fingers for a while.

And whether supplementing folate will get rid of the ones on my feet…?

Time will tell!

tattybogle profile image
tattybogle in reply to Jazzw

of course it might be that i went on strike in the kitchen 'department' last year and made ' him indoors' learn how to cook.... and do all the washing up ?

i got bored of kitchens ...... i just go there to make cups of tea now :)

Jazzw profile image
Jazzw in reply to tattybogle

:D :D

Don’t know about you but I’m still pretty obsessive about hand washing in our post Covid—hmm, that’s not right, it’s not over!—peri-COVID era. So my hands are still getting wet a lot.

I’m bored of kitchens too though. With just me to cook for it all seems a tremendous faff.

You've mentioned muscle twitching and spasms. Slow Dragon mentioned magnesium which has many benefits. It is only suitable for people with functioning kidneys. With kidneys that aren't really working well excess magnesium can build up in the body instead of being excreted in the urine.

You also mentioned having had below range potassium. Low potassium also causes twitching and spasm. Also, tics, cramp, benign fasciculations (look them up on youtube if you aren't familiar with the name) can be caused by low magnesium, low potassium, low iron, and possibly low vitamin D as well.

I used to be plagued by cramp in feet and lower legs, twitching and tics in my eyelids, benign fasciculations in lower legs. But taking supplements of all the things I've mentioned has helped me enormously.

Regarding potassium, people usually mention bananas as a source of potassium, but I'm not keen on them so I bought some potassium bicarbonate from ebay and mix it with orange juice. I also put my magnesium citrate supplement in it too and swallow the whole lot together maybe 2 - 3 times per week.

drmalcolmkendrick.org/2013/...

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