This is about not being able to eat with hypoth... - Thyroid UK

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This is about not being able to eat with hypothyroidism.

Meerkat1234 profile image
128 Replies

Could you please help me with low stomach acid. I have hypothyroidism and gluten sensitivity and maybe Hashimotos or something else my doctor said. My antibodies are 31. I can only eat carbohydrates due to chronic pain eating anything else. This has been like it seven years and the doctors show no interest. I have just started 25 levothyroxine. I have high cholesterol 7.7 but cannot take statins or non statins. I have low Vitamin D but have taken lots of different vitamin d supplements but they all cause chronic diarreah. I have had cortisol checked which was normal. I have had heart blood tests which are normal, one of my liver enzymes wasn’t right but the doctor said no action needed. I am really weak with not eating any protein and would like advice please.

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Meerkat1234
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128 Replies
tattybogle profile image
tattybogle

Hi Meerkat .

welcome to the forum.

The high cholesterol should gradually improve by itself once your hypothyroidism is treated . so you don't need to worry about that. ( High cholesterol is a known effect of hypothyroidism and improves as it is treated )

As you have only just started Levo , things will take time to improve ... and it will take time to find the right dose ,,,but they will improve .

Low stomach acid is probably also a direct result of being hypothyroid .. hopefully this will improve too ,as your dose is gradually increased to find the best dose for you .

Have you been told to go back for a blood test after 6 -8 weeks on 25mcg ?

25mcg is a very low dose to start on , the NHS guidelines usually suggest starting on 50mcg unless over 65 or have a heart condition ... did the GP say why they were only giving you 25mcg ?

There will be lot's of help available from people here.. replies may be a bit delayed since it's christmas... but rest assured , good advice will arrive :)

Meerkat1234 profile image
Meerkat1234 in reply totattybogle

Hi tattybogle. Thanks for the welcome and advice. Good to know about cholesterol and low stomach acid going to get better. I have had blood tests but I haven’t been told to increase from 25 levothyroxine. I am 65 but haven’t got a heart condition.

jimh111 profile image
jimh111

You won’t notice much difference on 25 mcg but it is the recommended starter dose for over 60s, it’s probably an over cautious approach. See how you are when you are on a higher dose.

Hypothyroidism can cause IBS symptoms which resolve when adequately treated. I doubt difficulty eating meat is due to low acidity as vegetables are more difficult to digest but it could be due to other effects of hypothyroidism.

Meerkat1234 profile image
Meerkat1234 in reply tojimh111

Hi jimh111 Thanks for your reply. I cannot eat meat or vegetables and have had IBS for decades. Hopefully like you say this will get better.

HowNowWhatNow profile image
HowNowWhatNow in reply toMeerkat1234

I also find meat more difficult to digest. Have to eat it because I’m low in iron.

I had a SIBO (small intestinal bacterial overgrowth) test done recently. Can you please look into this and / suggest to your doctor you have it done?

I now have antibiotics to deal with it. I had H Pylori not long ago and I think it / the antibiotics for it triggered the SIBO, but there are many things that can trigger it in different people.

Worth ruling in / out, I think.

Meerkat1234 profile image
Meerkat1234 in reply toHowNowWhatNow

hi HowNowWhatNow I have always struggled to eat meat. I will speak to my doctor about them both. Thank you for your kind reply. Have you ever taken anything to help with digesting meat. I have seen betaine hcl or apple cider vinegar might help. They don’t help me because I get pain but I am really hypersensitive to everything. My iron is ok at the moment. Thanks for the information. Like you say it is worth ruling in or out. Take care 😊

HowNowWhatNow profile image
HowNowWhatNow in reply toMeerkat1234

I’ve heard betaine recommended here so many times, that it’s only a matter of time before I order it.

I wonder whether, next time you / I have a large piece of meat, if you tried marinading in some kind of fruit juice, that would help the body break it down. Eg. Pork in apple juice. And can you have lemon juice? Whether lemon juice on cooked meat would help. Some people recommend not drinking at the same time as eating. Another thing I will trial.

Good luck.

Meerkat1234 profile image
Meerkat1234 in reply toHowNowWhatNow

Thanks for reply. I haven’t had meat since 2013. That sounds a possible marinading the meat. My B12 is low because I can’t eat dairy either. What do you eat. Do you like liver because that is full of iron. Most people don’t. I used to like it but haven’t had it for years. I don’t drink when I eat, or half an hour before. Don’t know if it helps or not. These thyroid problems really mess up your digestive system. Good luck to you too

HowNowWhatNow profile image
HowNowWhatNow in reply toMeerkat1234

How are you with stock or bone broth?

Or with small quantities of meat, as opposed to a huge portion?

Meerkat1234 profile image
Meerkat1234 in reply toHowNowWhatNow

I have tried broth and it makes me feel really sick. I was going to try and do the leaky gut diet but you have to start with the broth. I think my insides are very unhappy lol. I have had severe IBS for years. I think I will have to eat baby food with meat in it😂. I keep telling the doctors and gastroenterologists but I just get a blank stare. As I am 12 stone I don’t think they are concerned.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

As you’re 65 it’s correct to START on 25mcg levothyroxine

Bloods should be retested 6-8 weeks after each dose increase

Book early morning blood test, ideally around 9am and last dose levothyroxine 24 hours before test

Which brand of levothyroxine have you started on

Request GP test folate, B12 and full iron panel test for anaemia including ferritin, plus coeliac blood test too

What’s the range on the antibodies test?

Presumably that’s TPo antibodies- thyroid peroxidase

How low is vitamin D?

Have you tried vitamin D mouth spray. Absorbed in mouth not gut ……so hopefully wouldn’t upset your gut

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 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...

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...

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...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Hi SlowDragon. Thanks for welcome. The brand of levothyroxine Is Wockhardt.My B12 ferritin and iron are normal with no anaemia. My Vitamin D is only a little low and dr said take 25 ug per day. Have tried lots but they give me diarrhoea. I tried Spray from Better you but that did the same. My antibodies were 31. It is good that the cholesterol will go down. I have a liver enzyme not right but the dr said no action was needed. I didn’t know about taking magnesium. The antibodies tested were TPo thyroid peroxidase 31. The dr said they were supposed to be 9 so it showed inflammation. He said I could have Hashimotos or something else. I didn’t have a celiac test as I was already off gluten and because I felt so Desperately Unwell on gluten I didn’t want to reintroduce gluten. I saw a Consultant Gastroenterologist who said he thought I had gluten sensitivity. Thanks for all the advice.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

My B12 ferritin and iron are normal with no anaemia. 

do you have the actual results and ranges

“Normal” just means results are within range …..not necessarily optimal

Optimal vitamin levels are

Vitamin D at least over 80nmol

Serum B12 at least over 500

Active B12 at least over 70

Folate and ferritin at least half way through range

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I will print my blood test results to you.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

So yes, TPO antibodies are over range…..confirms autoimmune thyroid disease

Were Thyroglobulin antibodies tested too?

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.

approx 5% with Hashimoto's test positive for coeliac, but a further 80% find 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) 

How long have you been on gluten free diet?

Agreed there’s no point going back on gluten. You know you need to be gluten free

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. 

Are you also on dairy free diet, or do you suspect dairy might be an issue?

Links re gluten

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.

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I am on a dairy and soya free diet as these all make me unwell. I have been gluten free since 2013 and dairy and soya free for about two years. I don’t think anti thyroglobulin were tested. I am sure I have a leaky gut because everything I eat I get an immune reaction. I will print my results.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

So you have likely been hypothyroid since at least 2013….if not longer

It typically takes 6-18months to slowly increase dose levothyroxine up until on full replacement dose

Typically dose levothyroxine is increased up in 25mcg steps, but some people need to increase more slowly in 12.5mcg steps (eg by taking 25mcg and 50mcg alternate days for first few weeks, before increasing to 50mcg every day)

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Ideally don’t change brand when increasing dose

Wockhardt only make 25mcg tablets

So when ready to increase to 50mcg ….request 2 x 25mcg tablets initially…..that way you can stay on Wockhardt while you get use to dose increase…..

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

These are my last blood test results.

Serum Ferritin

Normal 11.00-307.00.Mine is 99.6ug/L

SerumB12

Normal145-914.Mine is220ng/L

Serum TSH Level

Normal 0.30-4.80 Mine is 0.61 mouse/L

Vitamin D

Mine is 32 nmol/L

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

As suspected….B12 is far too low

No folate result?

B12 and folate are usually tested together

How long since you started on levothyroxine?

Don’t change more than one thing at a time

Perhaps 4 weeks after starting on levothyroxine consider adding a B12 supplement

Do you have Low B12 symptoms?

If you do request GP test for Pernicious Anaemia BEFORE considering starting any B vitamins

b12deficiency.info/signs-an...

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

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...

Need Folate result ideally before considering adding vitamin B complex

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement ……and after 2-3 weeks adding a B Complex (to balance all the B vitamins) .

once your serum B12 is over 500 (or Active B12 level has reached 70), (likely after 2 months) stop the B12 and just carry on with the B Complex.

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

healthunlocked.com/thyroidu...

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

folate result is 4.33ug/L.Normal range is 3.00-20.00.

I have been taking levothyroxine for eight months. I have got many symptoms of low B12.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Good grief…..8 months on just 25mcg!

You need to get FULL thyroid test…..TSH, Ft4 and Ft3

Likely to have extremely low Ft4 and Ft3

Levothyroxine doesn’t “top up” failing thyroid….it replaces it

Dose levothyroxine should have been increased after bloods were retested 6-8 weeks after starting on levothyroxine

GP obviously only looking at low TSH

ESSENTIAL to improve low vitamin levels because low vitamins tend to lower TSH

We need optimal vitamin levels to convert levothyroxine (FreeT4) into active hormone (FreeT3)

Poor vitamin levels results in high Ft4, low TSH and very low Ft3

Low Ft3 results in low vitamin levels……because we need GOOD Ft3 levels for good gut function

Low Ft3 results in low stomach acid, poor nutrient absorption and low vitamin levels

And ….inability to eat protein too

What was TSH, Ft4 and Ft3 at diagnosis ?

What was result 6-8 weeks after starting on 25mcg levothyroxine

ALWAYS test thyroid levels early morning, ideally just before 9am to get highest TSH

Last dose levothyroxine 24 hours before test….to get lowest TSH

guidelines on dose levothyroxine by weight

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

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Approx how much do you weigh in kilo

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

So folate is virtually deficient

Suggest starting on B12 supplement ASAP

1-2 weeks after starting on B12 supplement, you can then add daily vitamin B complex

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-...

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

Also available as liquid Vitamin B complex drops

hempoutlet.co.uk/vitablosso...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

These are my last blood test results.

Ferritin 99

B12 220

Vitamin D 32

How long ago were these tested ?

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

These were tested in November so they are recent.He tested them when he tested for low cortisol because he thought that might me why I couldn’t eat and also tested for heart failure. He says I should take 1000 vitamin d which I can’t take and is concerned about my cholesterol which was 7.7.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

And should have tested thyroid levels in November

I don’t understand why they weren’t

Most important thing tomorrow

Get thyroid levels tested and then you can get dose increase in levothyroxine to 2 x 25mcg

One step at a time….

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Thank you so much. I will do all that you say. Like you say one step at a time.

SlowDragon profile image
SlowDragonAdministrator

Statins not recommended for anyone who is overtly hypothyroid as frequently cholesterol levels reduce when on adequate dose levothyroxine

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

You’re likely to need several further increases in levothyroxine over coming months…..unless very petite, likely to eventually need at least 100mcg levothyroxine per day

We have to increase dose levothyroxine slowly, especially if been hypothyroid a long time

Important to get all four vitamins tested and improve to optimal levels as this helps with how levothyroxine works

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Update.My husband got our doctor to phone. My husband is mostly concerned about my inability to eat and told the doctor that. I am being referred to Dietitician and help for Autism/ADHD. Also for an eating disorder. He said my thyroid was normal and he wanted to retest it in two months from last blood test. I told him I couldn’t take supplements.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

That’s ludicrous

Insist on 25mcg dose increase in levothyroxine

tattybogle profile image
tattybogle in reply toSlowDragon

just noticed , don't know if you saw it :TSH 0.61 when tested on 25mcg in Nov test.

"Serum TSH Level Normal 0.30-4.80 Mine is 0.61 mouse/L "

SlowDragon profile image
SlowDragonAdministrator in reply totattybogle

yes @nd she has terrible vitamin levels

Needs full thyroid testing TSH, Ft4 and Ft3

tattybogle profile image
tattybogle in reply toSlowDragon

yep , sorry .. when i got further down, i saw you'd seen it already

x

Meerkat1234 profile image
Meerkat1234 in reply totattybogle

You are like me. I don’t know who said what or where to find it on the computer 😂

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

sorry I thought that message was for me

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

are you and tattybogle talking about me

tattybogle profile image
tattybogle in reply toMeerkat1234

Yep .. sometime following the order of replies on this site is like 'herding cats' .. don't worry meerkat, its not just you who get's lost

Meerkat1234 profile image
Meerkat1234 in reply totattybogle

I am not very technical and it is the first time I have used a forum. Are you talking to SlowDragon about my results

tattybogle profile image
tattybogle in reply toMeerkat1234

Yes , i was :) .. i was just giving her a heads up to make sure she hadn't missed the TSH result , but then i realised she had already seen it .

To figure out who is saying what in reply to who ....

At the top of the reply you just wrote to me , you will see "Meerkat1234 ~ in reply to tattybogle "

and when i post this reply it will say "Tattybogle ~ in reply to Meerkat 1234"

but if i write a reply to slowdragons comment it would say "Tattybogle ~ in reply to slowdragon"

the replies will go underneath the comment you are replying to .. so you have to make sure you use the right "Reply" box for each comment .

( ...then unfortunately, it sometimes goes a bit pear shaped , because if several people all reply to the same comment , the replies can't seem to decide what order to put themselves in,. hence my 'herding cats' comment )

Meerkat1234 profile image
Meerkat1234 in reply totattybogle

Thanks for telling me how to use the forum. That is really helpful. I am suffering with terrible brain fog and I am terribly exhausted so everything is so difficult. My life is very much affected by Autism and ADHD which are two horrible disorders. This thyroid problem is so hard for me to deal with and my husband is also Autistic. We both struggle with everything. Thanks for your help.

tattybogle profile image
tattybogle in reply toMeerkat1234

you're very welcome Meerkat :) .... as well as 'thyroid stuff' , this forum is also helpful for learning how to use the blummin computer .. when i first came here i could only do "point and click" ... now thanks to Seasidesusie, and a passing child .. i can do "copy and paste" , and make things go 'blue' like this  Meerkat1234

Meerkat1234 profile image
Meerkat1234 in reply totattybogle

I am very impressed with the blue writing. I will learn as I go along and with your help will become better at this daft computer. 😂. I do appreciate the guidance. Thanks so much for caring. 🙂

pennyannie profile image
pennyannie in reply totattybogle

Does the passing child ever visit Cornwall ?

tattybogle profile image
tattybogle in reply topennyannie

No, it often drives down the motorway , but only as far as Warrington . you'd have to meet it half way .... . Bristol ?

pennyannie profile image
pennyannie in reply totattybogle

That's a very long stretch of extension lead, arms and imagination !!

I'll stay with one finger and tap everything in then :

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

yes Meerkat1234

Request 25mcg dose increase in levothyroxine now

If they won’t increase dose request they test thyroid levels now

Or get TSH, Ft4 and Ft3 tested privately

Test early morning and last dose levothyroxine 24 hours before test

Meanwhile you must work on improving low vitamin levels

Low vitamin levels lower TSH …..and GP is only looking at TSH

Essential To test TSH, Ft4 and Ft3

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I cannot fight with the doctors nor can my husband and I can’t take any supplements

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

can you ask for referral to endocrinologist

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I asked at the beginning of this and dr said they will only put medication up which he obviously didn’t agree with.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Then unless you can afford to see endocrinologist privately- about £250 you’re stuck

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

can you give me one in my area please

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

roughly where in U.K. are you

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

tukadmin@thyroiduk.org

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Morning SlowDragon. I spent an hour on the phone with my drs and asked to see a dr to be told no appts and ring back on Monday. They are totally useless. We have written to dr that rang asking for a full thyroid panel and all the vitamins and a full iron panel test for anaemia. I don’t know what else to do. We cannot afford to go privately.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

ok ….that sounds good plan

Make sure you do blood test early morning, ideally 9am and last dose levothyroxine 24 hours before test

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I will . Thanks. Will keep you informed.

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Hello Slow Dragon

I have the results of my latest blood test.

Serum TSH level is 0.81 mlU/L

Serum freeT4 level is9.9pmol/L

Serum free T3 level 4.3 pool/L

Serum ferritin 117.8 ug/L

Serum B12 &Folate 202 ng/L and 4.28 ug/L

Serum vitamin D 31 nmol/L

Serum electrolytes. Sodium 148 mol/L (abnormal) Potassium 4.4 mol/L

Creatinine 91 urology/L (abnormal)

Glomerular filtration rate 54mL/min/1?73m^2

Serum iron level 23.6umol/L

Bone profile Serum alkaline phosphatase 146u/L (abnormal)

Serum albumin 38g/L . Serum calcium 2.36 mol/L.

Corrected serum calcium level 2.40 mol/L.Inorganic phosphate 1.13 mol/L

Full blood count. Total white cell count 5.7 10*9/L

Red blood cell(RBC) count 4.31 10*12/L

Haemoglobin estimation 159 g/L (abnormal)

Haematocrit 0.48 L/L (abnormal)

Mean corpuscular volume (MCV) 112.4 fL (abnormal)

Mean corpusc haemoglobin (MCH) 37.0 pg (abnormal)

Mean corpus Hb conc (MCHC)

Red blood cell distribut width 15.2%

Platelet count 142 10*9/L(abnormal)

Neutrophil count 2.3 10*9/L lymphocyte 2.7 10*9/L.Monocyte 0.6 10*9/L Eosinophil count 0.0 10*9/L. Basophil count 0.0 10*9/L

Many thanks

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Suggest you write this reply as a new post so more people can see it

Please include ranges on results (figures in brackets after each result)

Especially

Ft4

Ft3

Folate

B12

Vitamin D

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

please also say on new post what dose levothyroxine you’re currently taking

Any other medications

What vitamin supplements

Was test done early morning and last dose levothyroxine 24 hours before test

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

What do you mean by a new post.?

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

start a new post

Copy your reply with these new results

Click on blue button top right that says “write”

Paste these results in the new post

And click on “post” when added all info

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

can you manage this?

If not

Just add ranges on the results here

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Vitamin D is insufficient

Needs improving to at least over 75nmol

Have you been supplementing at all

Try Vitamin D mouth spray

Try one spray per day….if that’s ok…..increase to 3 sprays per day

Retest in 3-4 months

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...

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Serum B12 202 ng/l

Folate 4.28 ug/L

What’s the range on these results

Usually B12 is Approx 200-780

Folate….bottom of range can be 8 or 3

Both results are obviously far too low

You will need to supplement

Low vitamin levels directly linked to being hypothyroid

As is low GFR (kidney function)

Glomerular filtration rate 54mL/min/1?73m^2

This result looks extremely low

Is there a range included?

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

GFR normal rate just says N/A. I’ve sent a new post with normal ranges, nt sure if it got through

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

There’s no new post

Can you rewrite?

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I’ll writ a new one,probably be in about an hour

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I took the blood test at 8-45 am and there was a gap of 24hours since I took my last levothyroxine tablet,my dose is 25mcg. I am also on Lyrica 50mg three times a day,diazepam 5mg one a day and zopeclone 7.5 mg one at night.I am not taking any supplements due to my digestive problems.Here are my results.

Serum ferritin 117.8ug/L. normal r 11.0-307.0

Serum B12&Folate.B12 202ng/L nr 145-914.Folate 4.28ug/L nr 3.00-20.00

Serum vitamin D 31nmol/L nr N/A

Serum TSH level 0.81mlU/L nr 0.30-4.80

Serum free T4 level 9.9pmol/L nr 7.7-20.6

Serum electrolytes. Sodium 148mmol/L nr 133-146 = abnormal

Potassium 4.4 mol/L nr 3.5-5.3

Creatinine 91umol/L nr45-84 = abnormal

Glomerular filtration rate 54mL/min/1.73m^2 nr N/A

Serum TSH level O nr N/A

Serum iron level 23.6 urology/L nr 11.0–32.0

Bone profile.serum albumin 38g/L nr 35-50

Serum alkaline phosphatase 146 u/L nr 30-130 = abnormal

Serum calcium 2.36 mol/L nr N/A

Corrected serum calcium level 2.40mmol/L nr 2.20- 2.60

Serum inorganic phosphate 1.13 mol/L nr 0.80-1.50

Serum freeT3 level4.3 pmol/L nr 4.2-6.9

Full blood count. Total white cell count 5.7 10*9/L nr 4.0-11.0

Red blood cell count (RBC) 4.31 10*12/L nr 3.80-4.80

Haemoglobin estimation 159 g/L nr 120-150 = abnormal

Haematocrit 0.48L/L nor 0.36-0.46 = abnormal

Mean corpuscular volume (MCV)112.4fL nr 80.0-100.0= abnormal

Mean corpusc.haemoglobin(MCH) 37.0pg nr 27.0-34.0=abnormal

Mean corpus.Hb.conc.(MCHC)329g/L nr 315-345

Red blood cell distribut width 15.2% nr 8.0-16.0

Platelets count 142 10*9/L nr 150-410= abnormal

Neutrophil count 2.3 10*9/L nr 2.0-7.0

Lymphocytes count 27 10*9/L nr 1.0-4.0

Monocyte count 0.6 10*9/L nr <1?0

Eosinophil count 0.0 10*9/L

Basophil count 0.0 10*9/L nr 0.0-0.3

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

So you need to try to improve vitamin D to at least 75nmol

Have you tried mouth spray.

It completely avoids poor gut issues

betteryou.com/collections/v...

Same is true of B12 drops

B12 drops 

healthunlocked.com/thyroidu...

There’s also B complex drops

betteryou.com/collections/v...

Or try just folic acid drops

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

FT4: 9.9 pmol/l (Range 7.7 - 20.6)

Ft4 is only 17.05% through range

FT3: 4.3 pmol/l (Range 4.2 - 6.9)

Ft3 only 3.70% through range

Most people when on high enough dose levothyroxine will have Ft4 and Ft3 at least 60-70% through range

You desperately need dose increase in levothyroxine to 50mcg

Then bloods retested again in another 6-8 weeks

Typically dose levothyroxine is increased slowly upwards over 6-18months until on approximately 1.6mcg levothyroxine per kilo of your weight

Levothyroxine doesn’t “top up” failing thyroid, it replaces it

Approx how much do you weigh in kilo?

GP only looking at low TSH

Low vitamin levels tend to lower TSH…..so it’s essential that vitamin levels are improved

Request dose increase in levothyroxine to 50mcg now

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

thanks for advice,will try to get a face to face appointment with my GP

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Print these guidelines out ready for GP

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Keep pointing out Ft4 and Ft3 are both showing you need dose INCREASE in levothyroxine to 50mcg

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Thank you for information for dr. Appt next Friday. I am worried about all abnormal results. He has asked to see me and I am scared. Video on HU today about Addisons disease which is life threatening. Had health check with nurse . Cholesterol gone down two points to 6 and blood pressure normal. I will ask dr to go up to 50 mcg of levothyroxine. I will tell you about drs appt. Thanks for your help. I don’t understand why my post only went to you. My husband did it so he must have not done it right.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Anxiety is extremely common hypothyroid symptom

Medics tend to think anxiety is only hyperthyroid symptom

Suggest you order vitamin D mouth spray online

Amazon usually cheapest

Start with just one spray per day initially

After 3-4 days …..increase to 2 or 3 sprays

In 2 weeks look at adding B12 drops

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

My anxiety is crippling. I received the vitamin d spray today. I will do it as you say. Then get the B12 spray. Thank you for your help. I just feel so ill and so weak.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

On Friday just keep saying you want/need dose increase to 50mcg daily as per guidelines

Underline how LOW Ft4 and Ft3 results are

Ft4 is only 17% through range

Ft3 right at bottom of range

When on correct dose of levothyroxine Ft4 and Ft3 should be at least 60-70% through range

Blood test 6-8 weeks after EACH dose increase

Likely to need several further increases in dose levothyroxine over next 6-12 months

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I will do that. I will let you know what happens. Thank you very much.

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Morning I took vit d last night in a couple of hours has palpitations diarrhoea numbness and ached from head to foot. Now have nausea and stomach ache also couldn’t sleep. This happens with every vit d supplement I take even this better you one. I read your bio and saw you had trouble with vitamin d.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Try again in couple of days

Meanwhile

Perhaps try magnesium supplement in evening (at least 4 hours away from levothyroxine)

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

what magnesium do I get I will try vit d in a couple of days.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

I would try this one

uk.iherb.com/pr/thorne-magn...

Doesn’t seem to upset gut (for anyone in my family anyway)

I can’t swallow capsules…..so I open it up

Tip powder into small cup of water …..stir and drink

You could try just half powder out of a capsule first

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Thank you for the advice. I really appreciate you taking the time to help me.

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

dr said take 1000 25ug daily so that is just one spray which I have just taken.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

GFR - typically over 80 is ok

Request GP tell you the range or refer you to kidney specialist

Being hypothyroid directly lowers GFR

Getting several dose increases in levothyroxine over coming 6-12 months should return GFR to “normal “

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

The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40] due to several reasons.

Larochka profile image
Larochka

hello Meerkat1234!

I overcame law stomach acid with supplementation of Betaine Pepsine, assisting in increasing hydrochloric acid essential for digestion of proteins, as well as preventing, repairing leaky gut !

Here I Copied & pasted from an article, by Izabella Weintz, super knowledgeable about Hashimoto since she put her own in remission for many years developed her own AIP regarding thyroid issues..

“Intestinal permeability can be a result of poor digestion caused by a reduction in enzymes that help break down food. Many people with Hashimoto’s experience acid reflux, bloating, and constipation, along with fatigue, brain fog, joint pain, and many other symptoms that may be caused by poor digestive function.One of the key “aha” moments on my road to recovery from Hashimoto’s, came when I decided to try a betaine with pepsin supplement to support protein digestion. I woke up the next morning with more energy than I had felt in a decade! I was finally able to digest my food properly.”

entire article thyroidpharmacist.com/artic...

Here

Meerkat1234 profile image
Meerkat1234 in reply toLarochka

Hello Larochka. I haven’t tried Betaine Pepsin. I will try it. Thanks for the reply and all your helpful advice. I am sure I have a leaky gut. Thanks for the article from Isabella Weintz. I will read that. I don’t have acid reflux but I am very bloated with constipation and diarrhoea. I have had IBS for years.

Larochka profile image
Larochka in reply toMeerkat1234

Of cause Meerkat1234 ! I’ve shared what helped to put my Hashimoto in remission thanks to Izabella Weintz ! I bought all her books as well watched her YouTube conferences she conducted awhile ago !

Thanks to her I’ve dealt with my issues successfully to the point of as I’ve mentioned above putting my Hashimoto in remission !

Have a very Merry Christmas 🎄❤️‍🩹🙏

Meerkat1234 profile image
Meerkat1234 in reply toLarochka

Hi Larochka thanks for replying. I will look up Izabella Weintz. I am so glad that with her help, you have put your Hashimotos into remission. That is such good 😊 news. You too have a very Merry Christmas 🎄🙏

Larochka profile image
Larochka in reply toMeerkat1234

Very Merry Christmas to you and all your loved once 🙏❤️‍🩹🎄

Hope and believe you’ll obtain a great wealth of knowledge regarding our condition from Izabella Weintz, I found to be one of the best guidance with multiple issues Hashimoto regarding!

All the best, dear Meerkat, you are in my prayers sweetheart 🙏❤️‍🩹

JAmanda profile image
JAmanda

I know how you feel. My stomach is rotten; I feel unable to digest anything but biscuits! I’ve been taking betaine with hcl when eating protein and I think it really helps. Look up betaine on this site for further advice.

Meerkat1234 profile image
Meerkat1234 in reply toJAmanda

I am sorry you are suffering too with your stomach. I am living on rice potatoes dairy free cheese dairy free margarine dairy free yoghurt. I will try betaine HCL with protein. Thanks JAmanda for your reply and help.

Hedgeree profile image
Hedgeree

Hi Meerkat1234,

The Wockhardt brand Levothyroxine that you've just started taking contains lactose. So if you have any increase in digestive issues (bloating, excess wind for example) that could possibly be the cause.

Best wishes.

Meerkat1234 profile image
Meerkat1234 in reply toHedgeree

Hi Hedgeree. I am taking quite a few tablets containing lactose. It is a problem. Thanks for replying.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

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...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or any PPI or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Are you currently taking a PPI ?

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

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I take levothyroxine when I wake up normally at eight a.m. with water. I don’t eat breakfast as I haven’t found anything I can tolerate. I have lunch at noon then dinner at 5 p.m. I don’t take a PPI.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Serum TSH 0.61 (Range 0.30-4.80)

When was this test from

Was test done early morning

Just testing TSH is completely inadequate

Get full thyroid testing done in January …..TSH, Ft4 and Ft3

Either via GP or privately

Test early morning and last dose levothyroxine 24 hours before test

Come back with new post once you get results

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

monitormyhealth.org.uk/full...

Medichecks - just TSH, Ft4 and Ft3

medichecks.com/products/thy...

or

Blue Horizon

bluehorizonbloodtests.co.uk...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

alternatively Medichecks or Blue horizon offer option to pay extra for private blood draw at clinic near you

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Some other medications can interact with levothyroxine ……especially lithium,

Or falsely lower TSH …..eg steroids, metaformin.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Being left on woefully inadequate dose levothyroxine is making your symptoms worse.

First step is to get next dose increase in levothyroxine

So need to get thyroid levels bloods test done asap

Meanwhile working on improving low vitamin levels will help

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Also

Anxiety and depression are EXTREMELY common hypothyroid symptoms and will improve as dose levothyroxine is increased slowly upwards

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

SlowDragon profile image
SlowDragonAdministrator

Low vitamin D obviously far too low….verging on deficient

Suggest you consider taking magnesium first for 2-4 weeks before retrying adding vitamin D

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...

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...

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 Hashimoto’s, 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

I couldn’t tolerate vitamin D supplements initially (more on my profile) ……

Suggest you look at getting out in sunshine April to Oct

Or ….try this lamp

sperti.com/product/sperti-v...

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Thank you for reading my results and for your helpful advice.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Have you booked a new blood test via GP yet

You need

TSH, Ft4 and Ft3 tested

Do NOT take your morning dose of levothyroxine before blood test

Take levothyroxine after test

Meanwhile working on improving low B12 and low folate levels are essential

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I am phoning my GP on Monday. Do I need to see a GP or on the phone. I asked to see an endocrinologist but he said all they would do was put the levothyroxine dose up which he didn’t agree with obviously. How can I tell the GP what to test for. What B12 shall I take and how much. The vitamin D is making me unwell. I have had numbness in my hands and feet since March 2020. I did have B12 injections but it went really high and the dr didn’t know why so he stopped the injections. With not eating and everything else I feel like there is no hope.

Meerkat1234 profile image
Meerkat1234 in reply toMeerkat1234

What do I do about my folate

Regenallotment profile image
RegenallotmentAmbassador in reply toMeerkat1234

folate- I take the B Complex mentioned above which has some in, but also supplement with a methylfolate supplement too, this finally stopped my hair falling out.

I have the MTFR gene variant that affects my absorption so look for methylated versions of b12 and folate. Folic acid isn’t as effective apparently 😊

Regenallotment profile image
RegenallotmentAmbassador in reply toMeerkat1234

my arms and fingers tingle too, upping b12 and folate helps. I too have terrible gut health. Lactose free Levo has helped. There are two brands to try, Aristo and Teva, some people don’t get on with Teva as it contains mannitol. I have Teva and it’s been ok, bit rumbly sometimes . Ask your pharmacist to help and to put lactose intolerant on your records.

I followed Isabella Wentz too, I see her books are mentioned. I found LGlutamine amino acid helped with my leaky gut and s. Boulardii supplements helped too. I also take NAC which smells like the depths of a volcano but does wonders for my poor old tum.

Just wanted to say I’m 15 months in, I too was left on 25mcg. I’ve had to test privately every 8 weeks and then send the results to my gp practice along the NICE guidelines you have above from SlowDragon and so far they haven’t argued and I’ve gone up from 25, 50, 75, 100 and now 125 mcg. I can tell you that I feel, sleep and look a lot better, there is work to don diet but I don’t have continuous IBS/loose movements 8 times a day anymore. It is sloooooow going. But I can attest to the fact that following @slowdragon ‘s advice really works.

Good luck, post lots of questions and results we’ll all share our experiences 🌱🦋🌱

Meerkat1234 profile image
Meerkat1234 in reply toRegenallotment

They obviously just leave you on 25 levothyroxine then. I am taking Diazepam for anxiety and Zopiclone for sleep and Lyrica for numbness and they all contain lactose but only in tiny amounts as I am okay with them. I will look at what your taking for your poor old tum. I can’t take ate a because of the mannitol, it made me really unwell. Why do you have to test privately and why do the drs think 25 is enough. I don’t understand it. It is helpful that you have tingling in your hands. I was getting worried I had neurological problems. Thanks for all your advice. 🙏☺️

Regenallotment profile image
RegenallotmentAmbassador in reply toMeerkat1234

I had the nerves tested on my hands as it coincided with a whiplash injury and the MSK doctor referred me to rule it out, but they couldn’t find anything in terms of signal’s being affected.

The local pathology lab won’t test T4 unless TSH is out of range and won’t test T3 without T4 being out of range so I send off for a finger prick test for all 3, they also won’t test for vitamins, a flat no, and my GP is happy to use the private testing numbers. It’s also very difficult to get an appointment at our surgery.

Meerkat1234 profile image
Meerkat1234 in reply toRegenallotment

What B Complex is it mentioned above. How do you get tested to see if you have that gene? Which ones do you take because I have absorption problems.🙂

Meerkat1234 profile image
Meerkat1234 in reply toMeerkat1234

My hair is falling out dreadfully. I have lost abou two thirds and the outer part of my eyebrows and eyelashes. It is no fun looking in a mirror because my face is all puffy and I have vitiligo on my face. Sorry for all different messages ADHD brain 🦋

Regenallotment profile image
RegenallotmentAmbassador in reply toMeerkat1234

Same for me on hair and eyebrows and yes I too tick lots of ADHD boxes too but am not diagnosed. Don’t worry about questions, the more we share the more we learn to help ourselves. Not everything works for everyone but it gives us options and hope 🤗 the combination of titrating up the Levo doses, eating Liver twice a week for Ferritin and BComplex and methyl folate plus taking selenium and working on my leaky gut to aid absorption has done wonders for my hair, I had a super itchy phase and all these baby hairs grew in my hairline, I’ve had to have a trim. It’s way thicker. I used to clip my toenails once a year as they didn’t really grown and now I’m hacking the claws off every couple of weeks. Fingernails are super strong suddenly. Eyebrows are slower but definitely more hairs than this time last year. My Mum said my face looked like me this week, I’ve been puffy and haggard for some time. 🦋🌱🦋

Regenallotment profile image
RegenallotmentAmbassador in reply toMeerkat1234

One of SlowDragon’s messages above talks about B Complex I think. I take Thorne Basic B, got the last lot from Amazon, some members found it on eBay, it’s imported I think. if you search B Complex in all the threads you can see the discussions. There have been supply issues. There are other B Complex options available. Important to remember to stop taking it 3-7 days before blood testing as the biotin can affect your blood test results and give you a false reading. I noticed the hand tingling returned when I was off it so it’s been suggested I take a separate methyl something B12 and methylfolate on those days. That does seem to help. We pee B12 out so need to keep on with it, it’s not a matter of raising levels and stopping unfortunately.

Regenallotment profile image
RegenallotmentAmbassador in reply toMeerkat1234

I had my ancestry DNA done years ago as a Christmas present. Hubby bought it for me as we heard via grandparents we had Russian Jewish refugees up the family line. It was fascinating and I’m really interested, by all this, linked me to literally thousands of 4th cousins that share DNA and common ancestors, found we had Scandinavian links too plus a big chunk of Irish via Nova Scotia. I was able to upload that dataset to a website that runs your DNA alleles against known health related mutations and MTHFR and DIO2 came up, affecting absorption and also affecting conversion of T4 to T3. If you search DNA in the search bar on th forum you can find all the previous discussions. Folks recently have been using Regenerus labs for a thyroid related DNA report that looks interesting but I haven’t done that one. 🌱

Meerkat1234 profile image
Meerkat1234 in reply toRegenallotment

That is interesting about what you found out your ancestors. I don’t know anything about my fathers family only my mothers. I will look into it ☺️

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Levothyroxine doesn’t “top up” failing thyroid. It replaces it

How long ago did GP refuse to increase dose levothyroxine and why?

Yes, because of your age you STARTED on 25mcg dose levothyroxine……bloods retested 2 months after starting on 25mcg

Low vitamins do tend to lower TSH

So it’s important to keep them at good level

B12 far too low at under 300

On levothyroxine we need B12 at top of range

Your current diet so restrictive that your unlikely getting any B12 from food

Low B12 symptoms 

b12deficiency.info/signs-an...

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

This is good quality B12

amazon.co.uk/Bioactive-METH...

Full dose is approx 13 drops

Suggest you start with 5 drops first 2-3 days

Before increasing to full 13 drops

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I have never been offered another blood test for thyroid and he said the endocrinologist would just put the levothyroxine up. He didn’t say anything about increasing it. My blood test was to look for low cortisol which was okay, He also looked for heart failure which thank God was okay. I will get the B12 drops. I just don’t know how to ask for the other thyroid tests, he will not know how I know and I don’t understand enough about this to explain. It is very hard when you have ADHD/autism as they are communication problems and I find all drs intimidating. My husband also has Autism so can’t help me. I am getting no nutrients from my food which has been since 2013. I tried Betaine HCL but all supplements are making me unwell. Can you tell me what to tell him please.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Make an appointment, ideally face to face and explain how extremely unwell you feel

List of foods you can eat

How your day is badly affected

You have been left on only 25mcg levothyroxine for 8 Months

Please can you have a thyroid and vitamin blood test now because you must be ready for next increase in dose levothyroxine

testing

TSH, Ft4 and vitamin D, folate, B12 and ferritin

Please can you try an increase in levothyroxine to 50mcg daily and a blood test in 2-3 months

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

I will do this and see him face to face. I am sleeping in our dining room downstairs as I can’t get up the stairs. I told him about food and he wasn’t interested but I will never get better and stronger if I can’t eat. That is my main problem. I feel as weak as a little kitten. I will let you know what happens. Thanks for talking to me today. I feel so isolated and alone and you have helped me today.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Can you see or speak to different doctor

Are you definitely still only on one 25mcg tablet per day after 8 months

Which brand of levothyroxine is the 25mcg

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

They are all different doctors some locums. The dr who owns the practice is never there as he has tow private clinics in London. He is the one who tested me for an underactive thyroid said I had Hashimotos or something else, then rang me up and said I was at risk of a heart attack or stroke if I didn’t take statins. I couldn’t take statins or non statins because the muscle pain was agony and I know they can cause permanent damage in thyroid patients. I saw a woman about numbness so maybe I should see her. I know her name. I have only taken Wockhardt levothyroxine 25 for eight months and never had blood retested.

Meerkat1234 profile image
Meerkat1234 in reply toMeerkat1234

I also have a liver enzyme not working right and she said don’t worry about it. I easily get fobbed off because I am not assertive due to my conditions and my husband is the same. My children think it’s in my mind and not real so they are no help.

Regenallotment profile image
RegenallotmentAmbassador in reply toMeerkat1234

children and partners need a stern word. I’ve experimented with how I explain my condition to others. I’ve had most success by explaining it’s an autoimmune condition in the same family of conditions as coeliac, type 1 diabetes, MS, Lupus etc. things with names they’ve heard of. Plus we need to be kind to ourselves, easier said than done but a little self care, acceptance that today will be a sofa day etc. it does get better and easier, do what SlowDragon tells you, it worked for me, sending virtual hugs 🦋🌱🦋

Meerkat1234 profile image
Meerkat1234 in reply toRegenallotment

I agree with you they husband and children need a stern word but unfortunately it is falling on deaf ears. I have a hard time explaining because of the Autism/ADHD. I will be kind to myself and I will try to explain it to my husband like you do with things they understand. Thank you for the encouragement. I am sending virtual hugs 🤗 back to you. Thanks for telling me it will get better and easier. I will do what SlowDragon says. Pleased it worked for you.🦋

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

I have only taken Wockhardt levothyroxine 25 for eight months and never had blood retested.

Bloods should be retested 6-8 weeks after EACH dose increase

Hypothyroid patients should NOT be prescribed statins initially….only if they still have high cholesterol after on correct thyroid treatment

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

So tomorrow you want

1) Blood test for thyroid TSH and Ft4 as been on ONLY 25mcg levothyroxine for 8 months

Bloods should have been retested after 2-3 months

Book test for early morning 9am if possible

2 Prescription increased to 2 x 25mcg levothyroxine per day

So you can stay on Wockhardt while you increase dose

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Thank you SlowDragon. I will do what you say on Monday

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

You said TSH FT3 and FT4 then you said just FT4 did you miss one out the second time.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Best leave out Ft3 (at moment)

Are you in the U.K.?

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

Yes I am in the Uk. Is the FT3 that does digestion? Are you in the Uk.

SlowDragon profile image
SlowDragonAdministrator in reply toMeerkat1234

Once your Ft4 is at a good level …..eg when in a year or so on perhaps 125mcg levothyroxine per day

Then we look at if Ft3 is low compared to Ft4

At the moment your Ft4 will be right at bottom of range because you are on half the starter dose

So Ft3 will be at bottom there too

So just ignore Ft3 tomorrow

we won’t forget it

But get the GP on your side first

Yes I am in U.K…..and off to bed now

Meerkat1234 profile image
Meerkat1234 in reply toSlowDragon

After me waffling on all day you deserve a good 😌 nights sleep. Sorry it is the Autism/ADHD. I go all round the houses to get to the point. Night. Have a good sleep 💤

SlowDragon profile image
SlowDragonAdministrator

lastly

Both ADHD and autism symptoms may improve as dose levothyroxine is increased slowly upwards over coming months

healthcentral.com/article/i...

adhdonline.com/is-it-adhd-o...

And essentially getting vitamin levels optimal

autismparentingmagazine.com...

Selenium supplement might be good idea too in 2-3 months

Only add one supplement at a time

Then wait 2 weeks to assess for any changes/improvements before adding another supplement

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