My recent blood results for thyroid function

[Ing0601]

Sorry not sure how to add two images in my previous post so here are the thyroid function test

[SlowDragon Administrator]

levothyroxine of 200mg and liothyronine of 40mg for last 10 weeks and those are my current results , the dose before that was 174 levothyroxine and 20 liothyronine. It was gradually increased over two weeks.

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Assuming yes .....

dose has been increased far too much and results now show you are very over medicated

Low vitamins in other post won’t be helping

Should only ever increase levothyroxine by 25mcg OR increase T3 by 5mcg ....wait 6-8 weeks and retest

To have increased T3 by 20mcg and levothyroxine by 25mcg was vast increase

Suggest you reduce T3 by 5mcg and wait 2-3 weeks ....then reduce a further 5mcg .....then retest 6-8 weeks later

[Ing0601 in reply to SlowDragon]

Thank you so much for such a quick response- yes I have followed the advice about blood test last Levo 24 before the test and last liothyronine 9 hours before the test all fasting from the night before and drinking only water.

I terms of my vitamins I only take Vitamin D once a week ( HUX D3 2000) I am assuming this is not enough. I take this after meal in the evening- what would you suggest for me to take and what dose please?

[SlowDragon Administrator in reply to Ing0601]

How low was vitamin D previously...how long have you been supplementing at 2000iu x 2 a week ?

Many people need 2000iu per day ...or higher ...very much trial and error

Vitamin D

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

Some areas will prescribe to bring levels to 75nmol

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

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

vitamindsociety.org/pdf/Vit...

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

Test twice yearly via 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

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

Government recommends everyone supplement October to April as an absolute minimum

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

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...

Importance of vitamin D for fighting Covid

moxafrica.org/post/the-vita...

Calculator for working out dose vitamin D required

grassrootshealth.net/projec...

[Ing0601 in reply to SlowDragon]

Thank you for your reply

I have been taking twice a week for last 4 weeks before this I was once a week as adviced my endocrinologist but I am so sorry I don’t have the results of vitamin D levels at the moment- I only see my endocrinologist once a year and never asked for my resultant just trusted her judgment but now I know so will request all my results from her.

I will reduce my liothyronine and retest it again.

Many thanks for your support

[SlowDragon Administrator in reply to Ing0601]

How do you normally take your T3 ...as single dose or split 2 or 3 times a day?

Is levothyroxine always same brand

[Arlie123 in reply to Ing0601]

Just to say hux d3 is usually 20,000 ui rather than 2,000.

20,000 twice a week is a loading dose - taken if you’re deficient. It also comes in 3,200 ui. Worth just double checking the packet before you up the dose

If you can, ring your consultants office to get the vitamin d results - you’re entitled to them. And then the peeps here can give you the right help

[Ing0601 in reply to Arlie123]

Hi Arlie

I am sorry it was a typo error and thank you for spotting my mistake.It is HUX D3 20,000 IU. Originally when I was started on this I took daily for few weeks and then on to once a week and then recently she asked my to increase it to twice weekly.

I will call and ask for all the past copies of results.

Many thanks

[Arlie123 in reply to Ing0601]

That’s ok! It was just that 40,000ui per week sounds about right depending on how deficient you are and didn’t want you to up the dose further as too much I think it can make you feel squiffy and isn’t so good for you.

[Ing0601 in reply to Arlie123]

Ok thanks, do you think I should stay on this dose and retest it in few months?

[Arlie123 in reply to Ing0601]

SlowDragon or SeasideSusie are probably better for advice on that front it depends on how deficient you are - I.e. your current vitamin d level.

[SeasideSusie Remembering in reply to Ing0601]

Ing0601

for Vit D deficiency you take loading doses to start with according to NICE treatment summary for Vit D deficiency: cks.nice.org.uk/vitamin-d-d...

(click on Management > Scenario:Management)

"Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.

* Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Regardless of what your doctor tells you and what level you reach after the loading doses, the Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L. It's best to aim for this.

Once you've reached this level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council which you wont get on prescription so will have to buy your own.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

[Ing0601 in reply to SeasideSusie]

Thank you so much for such detail explanation I will read up on all of this 🙂

[SeasideSusie Remembering]

Ing0601

SlowDragon has replied on your other post about your nutrient levels so I wont repeat her good advice.

From your other post:

Hi I have been on levothyroxine of 200mg and liothyronine of 40mg for last 10 weeks and those are my current results , the dose before that was 174 levothyroxine and 20 liothyronine. It was gradually increased over two weeks.

I am under the endocrinologist and she will do bloods end of next month, should I be contacting her with this results my worry is she will take the liothyronine from me which it makes me feel so much better and I don’t want to lose it.

What were your results on 175 Levo and 20mcg T3?

I don't think your endo knows what she's doing.

First, we don't change Levo and T3 at the same time, we only change one thing then give it a few weeks for levels to settle. If you change both at once you wont know what has made the difference.

Secondly to increase from 20mcg to 40mcg T3 over two weeks is madness. We increase T3 by 5mcg at a time and wait a few weeks for levels to settle and see what difference the increase has made.

Your FT4 is over range but your FT3 is very over range. It looks like you need to reduce your dose of T3 to get your FT3 back into range, after that you could also probably do with reducing your Levo to get your FT4 back into range.

[Ing0601 in reply to SeasideSusie]

Thank you so much for your reply. Sorry I didn’t know how to post two pictures at the same time and I have seen a reply.

About my results before on 175 Levo and 20 lio it was FT 4 was 8.8 ( 11.0-22.00) and FT3 3.1 (3.1-6.8) TSH 2.27 ( 0.27-4.2)

[SeasideSusie Remembering in reply to Ing0601]

Ing0601

You can only post one picture and it has to be in the opening post of a thread, it's always better to type any remaining test results into the original post which then keeps all information together.

About my results before on 175 Levo and 20 lio it was FT 4 was 8.8 ( 11.0-22.00) and FT3 3.1 (3.1-6.8) TSH 2.27 ( 0.27-4.2)

Your endo should have increased your Levo first to get TSH down to below 1 and FT4 up into range. Then see what that did to your FT3 level, then decide the next step.

However, it's very obvious that something is wrong to be on that amount of thyroid replacement hormone to still have a below range FT4 and bottom of range FT3. I don't know enough about Thyroid Hormone Resistance to be able to say that is your problem, but worth thinking about and looking into. Also, of course, your B12 and folate levels are so dire that they are going to be causing problems.

In essence, your endo doesn't appear to have a clue.

[Ing0601 in reply to SeasideSusie]

Thank you so much SeasideSusie

I very appreciate your support on this. I am only under this doctor as she is willing to prescribe T3 but will follow your advice on the dose and see how I feel. The reason it was increased I was feeling so unwell had no energy to do anything had to stop working I also have put 2 stone and my diet have been very healthy It dose not make sense what is happening with my thryroid blood tests.

My TSH levels were always under one as this was advice by my endocrinologist after my thyroid was removed. I was living back then in Australia and was on a 200 levothyroxine but since coming back to England my Levo brand is different and I did have some issues with it so the endo here added T3 I was fine on it for about a year and few months then from January this year it all went down hill and I felt so exhausted felt very dizzy no energy what so ever plus the weight it’s keep piling on. I understand this could also be related with my low vitamin levels so will ring my GP tomorrow and ask for PA test as I am aware as you pointed out my vitamin levels are very low. I have an appointment next week with haematologist as my white blood count are very high so will ask him about the PA as my understanding is it’s link to blood disorders.

Many thanks for all your valuable input.

[SlowDragon Administrator in reply to Ing0601]

These results seem extraordinarily low considering you were on 175mcg levothyroxine and 20mcg T3

Which brand of levothyroxine?

Teva brand upsets many people

Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Are you lactose intolerant?

Vegetarian or vegan

[Ing0601 in reply to SlowDragon]

Hi Slow Dragon

Thank you for your reply. I always take my medication on an empty stomach at 6am both T3 & T4 and nothing to eat until after 9am

I am on mercury pharma for both at the moment, however previously until I start following HU I was on 100 of Teva 25 and 50 of different brands.

As far I am aware I am ok with lactose.

I have managed to get hold of Eltroxin from back home in Australia which should arrive this week, those are lactose free and don’t have any added dyes in them so I know didn’t cause me any problems whilst I was living there.

[Ing0601 in reply to Ing0601]

Sorry I am not vegan but don’t eat much of meat as I just don’t like it to be honest.

[SlowDragon Administrator in reply to Ing0601]

So this may cause low B12 or ferritin

It can be hard work trying to maintain optimal vitamin levels

[Ing0601 in reply to SlowDragon]

Thank you for your reply. I will call my GP tomorrow and ask if she can test for PA.

In a mean time I will increase my Vitamin D and wait for the bloods to investigate Low B12 before supplementing.

I was just wondering if I maybe should go back to 20mg T3 and stay in the levo of 200 and see what happens. What do you think about this? Or should I decrease the T3 like you suggested before ?

Many thanks

[SlowDragon Administrator in reply to Ing0601]

Well reducing T3 can be MUCH trickier than increasing...so you may need to reduce slowly ....

See how you get on

[Ing0601 in reply to SlowDragon]

Thank you so much I will start with reduce dose tomorrow and see how it goes

[waveylines in reply to Ing0601]

I suffered with low B12 until going onto injections. Correcting the b12 made a big difference to me. Have a look at B12d.org Great site with an assessment toolkit of symptoms. Fatigue and exhaustion and weakness being three of a myriad of symptoms. Low b12 is common in hypothyroidism. Though yours might be due to eating very little meat so supplements should work well for you.

You are over medicated on thyroid hormones medication. This happened to me and my endo had me go cold turkey to get the level down. I was scared but it worked and all that happened is that I felt better! Whether your endo has the where with all to know what to do is another matter as what he/she has done increasing both and T3 in such a big jump was bound to lead to this and shows ignorance tobh. It takes 6-8 weeks for each small dose increase to have full effect on the body. The medics call this tiltration incase you see it in a letter. This is why its done with small increments of increases over a number of months. This way you avoid over prescribing and will find your sweet point (optimum dose). One change at a time. Its tedious and slow but the only way. A good endo would know this! Lol.....

[Ing0601 in reply to waveylines]

Thank you so much for the info, I am waiting for my GP to call me about my low B12 and low folate serum so will discuss this with her and read up on your suggestions.

Do you think I should perhaps go back to my previous dose of 175 levo and 20 liothyronine, ( my results on that those were very low FT4 very low FT3 and 2.27 TSH as this has worked before however I felt awful after over a year on this dose and since January this year have put so much on weight without any change to my diet , I eat a lot of veggies and fruits and fish and occasional meat but not much as I don’t like it so much.

Many thanks for your advice

[waveylines in reply to Ing0601]

Am not a medic but if it were me I would stop my meds for a few days as you are over cooked and then restart with a slight increase of levo say up to 200 and keep the Liothyronine at 20mcg. It could be that a higher dose of levo combined with the liothyronine will help you to convert.

And take methylcolanamin B12 tablets once your GP has checked out that there is no other cause than your diet. Did you say your folate was low? Folate is very important for utilising the b12.

I would also keep a simple daily diary of the meds/dose plus any supplements, your signs symptoms how you feel, pulse rate & temp done first thing before rising. Add in any blood test results. This will give you a record which you can look back on to see what helped and what didnt. It will help to spot patterns. You need to be methodical -keep your thyroid meds the same for 6-8 weeks then retest. Your GP may agree to test but probably will only be able to get the TSH tested so you may have to do a private thyroid test. Your GP will probably be willing to retest b12 levels. Always ask for copies of blood tests results.

Lastly it might be worth asking Thyroid UK for a list of thyroid friendly docs as you may wish to find a more knowledgeable endo.....

There are some really knowledgeable people on here who can help you if you get stuck.....just keep posting on here! 😊

[Ing0601 in reply to waveylines]

Hi Waveylines

I agree about the levo , I had emailed my endo in Australia and he suggested exactly what you said😊 so thank you so much for this suggestion!

I will start my medication on Sunday of exactly the dose what you said and retest. However whilst on this high dose I manage to loose few Kg so that’s was a positive side effect. He also mentioned that sometimes patients after TT May feel better on higher dose even if it’s slightly over medicated providing there is no other side effects like heart palpitation or chest pain ect. I will see how it goes and retest in 6-8 weeks, finger crossed my weight will continue to drop.

I’m terms of my B12 my GP agreed my levels were very low and mentioned I may need B12 injections so she repeated my B12 blood test and full iron panel yesterday. She also will test my thyroid she is a very good GP and I am lucky with her, she always orders my full thyroid panel FT4& FT3 and TSH she knows I am on both T4 and T3 medication so said it’s very important to test full thyroid panel she also is the one who prescribed my lio under my endo advice 😊

I was wondering if I could ask you a question about your B12 shots ? What was your levels before you went on the B12 and what level of deficiency you have to be in order to get shots in England ?

Many thanks

[waveylines in reply to Ing0601]

No worries. My lovely endo said so long as you keep your thyroid hormones in range then no harm will be done, the TSH is less important as its basically a signalling mechanism telling your thyroid to produce more or less -you dont have a thyroid so the TSH isnt really relevant! . You've had a short blip too high so dont worry about that.

Its all trial and error so going slow and changing one thing at a time is the best way. It took me a while to get sorted but have been on the same dose for 10yrs now, with slight tweaks for extended extra cold or hot weather. I use a ndt that worked best for me but everyone is different.

[Ing0601 in reply to waveylines]

Thank you so much your comments made me less anxious I was concerned with being over range I could cause some damage, so thank you 😊

[waveylines in reply to Ing0601]

Apologies I never answered your B12 question. My B12 was technically in range but low at 230 ( Range 190-900) but I had many symptoms including tremors, gross weakness, struggling to manage stairs, get out of chairs/bed etc, loss of bowl control, memory issues, double vision, extreme fatigue, swallowing problems, pins and needles, numbness in toes. So my gp referred me to neurologist but 6 month wait! Decided to self inject b12. Many of my symptoms started to resolve within a few weeks. However my tremors though improved have not gone so fear I have damage now. Neurologist agreed with high frequency b12 injections when I finally saw him. My gp backed me and am on daily b12 injections. I recently started twice daily which seems madness I know but the high frequency dampens the tremors down.....

Your body excretes any excess B12.

I would never advocate this level of b12 injecting but for me it works -lower frequency doesnt. Ive no idea why! Lol...

Your GP sounds lovely and supportive, fantastic. They are rare so hang onto her! She should investigate your absorption issues though to make sure nothing else is going on. Low b12 is common in under treated hypothyroidism and being a vegitarian will have added to it.

[Ing0601 in reply to waveylines]

Hi Waveylines

It’s ok 🙂. I am so sorry you had to go through all this for six months before you got to see a specialist.

I hope you will feel better soon 🙂

I have similar symptoms to yours but not as many as you described my are mainly tremors and tingling and pins and needles in my hands and feet especially the fingers and toes and swelling in my right foot. And some numbness especially in the morning in my toes. I also sometimes get this electric shock going through the base of my foot, but I thought it was all linked to first being tired from working long hours and then my luck of thyroid and now I don’t know what to think.

The results from my GP are back however she has not called me yet. She only checked serum B12 which is 291pg/ml (191.0-663.0) and serum folate levels 8.3ug/L (4.8-37.3) which is strange as my results from last week were 2.75 so how come has this gone up so quickly it’s beyond me.

So not sure what will happen now?? The results are saying it’s normal, but I feel awful. My doctor in Australia thinks I should have intrinsic factor checked,to rule out PA - is that’s something they tested you for?

I am so glad the injections are working for you even if it’s a higher dose however the main thing is you are feeling better.

Sorry for asking all this questions I just feel anxious and want to get better and be there for my two girls

Many thanks 😊

[waveylines in reply to Ing0601]

Please dont think your B12 levels are normal. That is low and many people have symptoms at that level. However the NHS can be rather rigid on blood levels. The PA Society recommends EVERYONE'S levels should be over 500. The symptoms you describe are neurological. As such GPs are not meant to wait but prescribe injections alternate days until there is no further improvement. Sadly many are not well informed but your GP sounds sympathetic so Id ask for a phone consultation.

I didnt wait to see the neurologist but started self injecting immediately. Bought my own b12 vials, syringes and needles. Waiting wouldve caused more damage. Luckily the neurologist backed me & my GP who was stunned at the improvement Is made on b12 jabs is also backing me. Ive been injecting two years now. It can take a long time for nerve damage to heal. The longer it goes on the more likely permenant damage but there is no set period. It is therefore likely that I do have permenant damage sadly as I had tremors for 10 years before starting injections but the extra b12 jabs seems to be improving things so we shall see......proofs in the pudding as they say!

Speak to your GP first and see if they will prescribe......and also to see if shes planning any further investigations. Your folate will need to come up. Am not an expert on this area so you might want to message Seaside-Suzie. Shes brilliant on vits/minerals. GPs know very little about mineral/vits am afraid.

I used a basic b complex with folate in it called Thornes Basic B. Most b vits you excrete excess of out but not b6 so thats the one you can over do. The vitamins bs work together best -they need each other!

[Ing0601 in reply to waveylines]

Hi Waveylines

I am so sorry I didn’t reply to your last message. I have been so unwell lately and not able to do much. I had a phone consultation with my GP who said my B12 are in range and I don’t need to do anything about it, and the symptoms of tingling and tremors I described early she thinks it’s possibly linked to something else that I am being investigated by Hematology. So basically I have been unwell for good few months now unable to eat have swollen lymph nodes staring to loose weight plus my white blood cell counts are abnormal so they think I may have cancer - they done more bloods and a full body scan with contrast so awaiting the results for it now to see what’s next step will involve, so therefore my GP thinks the neurological symptoms of B12 are actually something else rather then B12 deficiency.

Not sure what to do now. I was thinking about getting private B12 injections but a bit scared if this could affect my other health concerns they are now investing. Perhaps I should maybe start taking the B complex you mentioned and see what happens?

I don’t know ? Any suggestions would be much appreciated.

All the best

[waveylines in reply to Ing0601]

Hello Ing0601,

Am so sorry to hear that your doctors think you may have cancer. I think you need to wait for the results. I wouldnt start b12 injections or the b12 complex. A raised whiteblood count is not related to b12 deficiency. I went through breast cancer treatment 6 years ago and the oncologist was very particular about vitamins and minerals supplements. Waiting to hear results is horrid and you feel in no mans land........hope you hear soon. Sending you the biggest of hugs. Xxx

[Ing0601 in reply to waveylines]

Hi

Thank you so much for your lovely kind words😊 The C word is scary and it would be my second if it happens but trying to stay positive!! the waiting is awful, just before the CT the consultant arranged another telephone appointment for 2nd of September I hope they not going to wait that long before discussing my results ☹️.

When you mentioned your oncologist was very particular about vitamins and minerals supplements- do you mean they don’t advice taking during the treatment?

Thanks so much for your support

[waveylines in reply to Ing0601]

My oncologist didnt like me taking any vitamins or minerals accept those that were essential and prescribed. Thats why Id wait to see what they say. You can ask consultant then too. It takes a little while to get results back and am guessing they may have a md meeting before ringing you. The wait is agony I know. Distraction is all you can do. Xx

[Ing0601 in reply to waveylines]

Thank you Waveylines I will wait with vitamins and supplements until I speak to the consultant. Yes the results is taking long she has booked an appointment for me for the 2nd of September the same time she booked more blood tests and CT scan so I am assuming I will have to wait till then to know more. Even tho I was hoping to hear sooner but Like you said distraction is a good tool to use so trying to stay busy with my kids.

Thank you for your support

[waveylines in reply to Ing0601]

It maybe they are going to present the results and their action plan if needed in one consultation. Very tough for you. I had to wait two weeks though I shouldve been told on the day but because of a balls up by an incompetant trainee who refused to tell me despite me directly asking him .....he got a big telling oof by the consultant when she returned from her break. So my heart goes out to you. Keep busy with the children and rest, watch films, sort cupboards anthing to keep your mind off it. Big big hugs xxx

[Ing0601 in reply to waveylines]

I am sorry about how you were treated by a trainee.... From experience when i was training I was always petrified to make mistakes that could affect the patients - I am glad the trainee have been spoken to by your consultant.

Thank you for your words of support they are very much appreciated.

Trying to clean my kitchen cupboards lol you read my mind !!

[Ing0601 in reply to waveylines]

Hi

Sorry forgot to answer you question about folate and yes it’s well below reference range, GP did full iron panel but again my doctor back in Australia suggested to have iron infusion but I don’t know if this is available in England or if my GP would know about it.

Many thanks

[SlowDragon Administrator in reply to Ing0601]

Malabsorption is common issue With Hashimoto’s

academic.oup.com/edrv/artic...

[Ing0601 in reply to SlowDragon]

Thank you for this link I will read up so much very valuable information , I really appreciate your knowledge 🙂