Supplemented and retest, Still severely sick. H... - Thyroid UK

Thyroid UK
109,924 members127,769 posts

Supplemented and retest, Still severely sick. Help please?

Yennn
Yennn

Supplemented for 6 months and retested.

I appreciate if I can get some advice?

3 years on and still severely sick.

I had a lot of great info on here and I took the advise, please can I ask for guidance.

I supplemented with a Iggenus b complex 2x a day , meythlfolate 400 mg , better than your vit d + k2 spray 3000iu magnesium. My endo prx hydrocortisone for my low cortisol test and I talked her in to trialing tiromel 3mcg.

I retested and here are my results

Tsh 1.71 (0.27-4.20)

Ft4 17.40 (12-22)

Ft3 4.4 (3.1-6.8)

TPA <4 <24

ATA <20 <115

Vitamin b12 1046 (197-771)

Previously 699

I have never supplemtns with just b12 only my b complex

Folate 25.74 (3.89-26.80)

Previously 7.3

Vitamin D 45nmol 25-50

This dropped no idea why?

Iron 15.3 (5.83-34.5)

UBIC 33.7 (24-70)

TIBC 49 (40-76)

Transferrin saturation 31.2 (15-45)

Ferritin 30.2 (13-150)

Ferrtin Previously 41

My b12 levels are too high, alrho my doctor says that can mena my body isn’t utilizing it, how I make the body use it?

How can I increase my ferritin levels, is my iron levels too low and how do I raise t4 and T3 endo will not prx Levo or armour I have asked, fought to trial it. Firm no on that. Many thanks

13 Replies
oldestnewest
SlowDragon
SlowDragonAdministrator

Are you saying you are ONLY taking 3mcg T3?

That’s a ridiculously small dose of T3. Taking almost any dose of T3 will significantly lower TSH

What was TSH before adding minuscule dose of T3

Obviously you need levothyroxine as well....usually we START on levothyroxine at 50mcg....retesting 6-8 weeks after each dose increase

Suggest you find a different endocrinologist or considered trying levothyroxine on your own

Vitamin D needs improving to at least around 80nmol and around 100nmol may be better.

What magnesium supplement are you taking

Perhaps drop Igennus to one tablet per day now as B12 is high

Presumably you stopped Igennus a week before blood test (as contains biotin)

Yennn
Yennn in reply to SlowDragon

Hey! How are you? Yeh the endo only trialled me on thy as I kept banging on that my ft3 was low. She is my four endo. All other endos say there is nothing wrong with my thyriod and adrenals alrho I failed 5sst. They argue borderline. I can not go through the stress and argument with finding any more endo. And now we are on lock down it will be many months.

Can you explain to me as I still don’t get the thryiod , why I need Levo? And where I can get it from if no doctor will prx me it? How much T3 should I be taking ?

Also do you have any idea on my ferrtin levels why they dropped so much? And what I can do about it? Many thanks

SlowDragon
SlowDragonAdministrator in reply to Yennn

As soon as we take any dose of T3 the pituitary sees this and TSH reduces...turning your own thyroid hormone output down. In effect, becoming more hypothyroid.

Hence vitamin levels dropping

That why T3 is much more difficult to manage than levothyroxine. Same thing does happen with levothyroxine too, but not at such small doses, usually not till up near full replacement dose

Taking any replacement thyroid hormones, doesn’t “top up” your own thyroid output...it replaces it

Levothyroxine is easier to tolerate in early stages.

As you are on hydrocortisone you would need to be very careful starting on small dose levothyroxine and increasing very cautiously

Has endocrinologist established why you have such low cortisol

Central hypothyroidism?

Addison’s disease?

Do you have pituitary tumour?

Yennn
Yennn in reply to SlowDragon

Sorry I should I have said these tests were down before endo prx t3.

One endo think my SST was down wrong then next endo said that some ppl just fall out within range my

Morning cortisol was 216 rise was 300odd I have argued till I’m blue in the face. Spent so much money on endos even saw one that was recommend from the pituarty foundation she can’t makes sense of my results either. Low SST results then next passed so when she got the pass she gave up on me. The last cortisol test I done results were

9am 418 rise 520 and she stopped my HC I spent about 5 months bedridden again and then I saw a functional doc who done a saliva cortisol and I was rock bottoms low and now I’m back on HC. Still no dx. It was secondary then it could have been pituarty then we isdi mri ruled that out. I asked for other testing all was refused.

What about armour thyriod ? Would that be a better one to tolerate if on cortisol if so could you pm me where I. Can get it from and dose to start off with? It has been beyond a nightmare with endos I really don’t ever want to see another again! Xx

SlowDragon
SlowDragonAdministrator in reply to Yennn

Still think you would find it safer/easier to start on levothyroxine....at least initially

Perhaps at 25mcg and retest in 6-8 weeks

Increasing up very slowly and retesting 6-8 weeks after each increase

Have you had BOTH TPO and TG Thyroid antibodies tested?

Have you had thyroid ultrasound scan?

Are you on strictly gluten free diet?

Yennn
Yennn in reply to SlowDragon

TG was done at 33.9 0.00-115

No TPO. And I won’t get back of a doc office for a good few months now plus my GP has never done these always had to pay to see a private endo. & they sucked. Yeh strict gluten free now for almost 3 years haven’t noticed anything different in stil severely sick.

I can’t get my doc or endo to prx me levo. Could you pm where I CN get it from? Thank you 💛

Do you use a weekly pill organiser? If you don't you really should - they can be extremely helpful. I take some of my supplements just three times a week, others might be four times a week, some are every day, and I would never remember without the pill organiser what I need to take on any particular day. I save money with the pill organiser too because I reduce the risk of taking more than I need.

You don't need as much B Complex as you are taking, but I wouldn't suggest stopping it altogether. You could take your B Complex just four or five days a week. Another alternative is to cut down from 2 tablets to 1, on say, four days a week. There are lots of possibilities.

Finding the right maintenance dose for anything is a trial and error process that may take ages to get right. But it saves money when you do get it right.

Yennn
Yennn in reply to humanbean

Thank you yes I have a pill box and lovely rainbow one from amazon. Any ideas how to up vitamin d as I was supplementing that with k2 and mag cirate also my ferritin levels dropped too? Thank u

Iron 15.3 (5.83-34.5) 33% of the way through the range

UBIC 33.7 (24-70)

TIBC 49 (40-76) 25% of the way through the range

Transferrin saturation 31.2 (15-45)

Ferritin 30.2 (13-150) 12% of the way through the range

Ferrtin Previously 41

This link gives you an indication of optimal results for iron :

rt3-adrenals.org/Iron_test_...

Iron : Too low - needs to be around 21 - 26 - lower end of that range for women.

Transferrin saturation : Needs to be 35% - 45% - lower end of that range for women.

Ferritin : Usually recommended on this forum to be around mid-range i.e. around 80 - 85.

---

To improve iron levels with food see this link :

dailyiron.net/

...

If you want to try iron supplements that's a big subject. They can be bought from pharmacies in the UK without prescription as long as the pharmacist agrees. I've only been refused once, and on that occasion I just went to another pharmacy from a different chain. Personally, I usually buy from Lloyds Pharmacies or Tesco Pharmacies.

Iron can be supplemented in several different ways. For info on the different types of supplements available :

dropbox.com/s/g8y4e7alm5ow0...

For info on dosing used by the NHS :

bnf.nice.org.uk/treatment-s...

bnf.nice.org.uk/drug/ferrou...

bnf.nice.org.uk/drug/ferrou...

bnf.nice.org.uk/drug/ferrou...

Ferrous sulfate and ferrous fumarate contain roughly the same amount of iron per tablet. Ferrous gluconate contains roughly half the iron of ferrous fumarate.

When I was very iron deficient I took ferrous fumarate 210mcg :

waltonpharmacy.co.uk/images...

Note there are 84 tablets per box of ferrous fumarate 210mg which is enough for 1 tablet, 3 times a day, for 28 days. Each tablet contains 69mg iron. So three per day totalled 207mg iron per day. That is the dose I took when I was very severely deficient, and is the maximum anyone should ever take. In practice people should avoid taking the maximum possible dose because most people won't need it and iron is poisonous in overdose.

I would suggest one tablet, twice a day would be ample in your case, and even one per day may be sufficient and is what I would suggest trying first. There has been some recent research suggesting that taking iron on alternate days helps improve absorption.

nutritioninsight.com/news/t...

Take 1000mcg vitamin C per tablet to help absorption. If you get constipated you can increase the dose of vitamin C. All the iron supplements that the NHS prescribes can be rough on the gut. Some people tolerate iron, others don't. I can't tolerate ferrous sulfate, but I cope with ferrous fumarate. Everyone has to experiment for themselves to find what works for them.

In practice, the higher the dose of iron the fewer people will tolerate it. Always check the iron content of any iron supplement you take - it should be mentioned somewhere on the packaging.

To buy a particular iron product it is worth printing out a picture of it and taking the picture to your pharmacy, or just save the picture on your phone to show the person serving you.

If you start supplementing iron you must start testing your iron and ferritin regularly - about every 6 weeks or so. Iron is poisonous in overdose and the body can't get rid of any excess. People who end up with too much iron can only get rid of it by having blood taken. Iron settles in the organs - including the brain and the heart - if the patient has too much iron.

Please note I am not a doctor and have no medical training whatsoever.

Yennn
Yennn in reply to humanbean

Thank u so much for this information. I will retest 6 weeks. If we are stil in lock down I will try to get an order a test online. Ok start slowly.

Vitamin d levels aim for 100 take with k2 -mag. Iron aim for 21 ferrtin 80/85.

What your opinion on my ft4 and ft4 levels?

I wanted to try armour to try raise both. Was recommend to start low dose of Levo?

humanbean
humanbean in reply to Yennn

As a rule, I've given up commenting on thyroid results, sorry. There are so many ways in which the thyroid can go kaput that I don't trust myself to answer sensibly and logically any more because I always forget lots of stuff that might be relevant.

Yennn
Yennn in reply to humanbean

Aw thank u for the help of vitamins and iron I found hay beet useful and was lovely of u to take the time to help me thank u and I wish u all the best stay safe xx

Any ideas how to up vitamin d

Vitamin D 45nmol 25-50

I think you might have misinterpreted the reference range for your vitamin D. The last time I got a vitamin D test done the reference range was given like this :

< 30 Deficiency

30 – 50 Insufficiency

51 – 75 Borderline deficient

76 – 250 Optimally replete

> 250 Possible toxicity

I have read that the NHS has now declared that deficiency occurs with a level of under 25, and insufficiency occurs with a level of 25 - 50, which is dreadful, and is clearly designed to save money rather than keep people healthy.

On this forum the optimal level of vitamin D is given as either 125 nmol/L or 100 - 150nmol/L.

To work out the dose you need to raise your vitamin D :

1) Convert your level from nmol/L to ng/mL using this link :

grassrootshealth.net/?post_...

45 nmol/L is equivalent to 18 ng/mL

2) Calculate the dose you need using this link :

grassrootshealth.net/projec...

If you weigh 140 lbs (10 stone) then the ideal dose for you is 3000 iU - 5000 iU.

Obviously you should repeat the calculation with your real weight in pounds.

Do not buy vitamin D2 supplements, always use vitamin D3.

Finding 5000 iU vitamin D3 supplements is usually easy enough to find online. I don't know if there are supply problems as a result of coronavirus.

For discussions about the co-factors required while taking vitamin D3, see SeasideSusie's replies to other people here :

healthunlocked.com/user/sea...

You may also like...