Still Exhausted

[Spam1]

Eventually, after a very long battle with docs, they referred me to an endocrinologist. The Thyroid tests are normal - I haven't seen the results but my Cortisol level is 300 - they didn't go into detail - so now I have to have another blood test where I am injected with I think synthetic cortisol - anyone know what this does and what this may show - Im so exhausted I could cry!

[SeasideSusie Remembering]

The Thyroid tests are normal - I haven't seen the results

They are saying "normal" because they fall somewhere within the reference range, but that doesn't mean that your results are optimal for you. You need to know the numbers and the reference ranges and so that you can understand where it is you feel well and where it is you feel unwell then you need to keep a record. Ask for the results and ranges, we are legally entitled to them here in the UK.

Someone else will comment on your cortisol test.

In this post a few months ago, you were advised that all your nutrient levels were low:

healthunlocked.com/thyroidu...

What have you done to try and improve them?

Have you discussed testing for B12 deficiency with your GP due to your very low Active B12 result?

Folate was barely over the low limit, almost bordering on deficiency.

Vit D just scraped into the "sufficient" category but needs to be 100-150nmol/L according to the Vit D Council/Vit D Society.

Ferritin was low and needs to be at least 70 for any thyroid hormone to work, and that includes our own.

[Spam1 in reply to SeasideSusie]

I took those results to the consultant endo and he said they were all ok, apart from the VIt D which I am taking extra of each day. He also told me to eat 2 brazil nuts a day - think that was for selenium . that was it! Then he ordered this new set of bloods - I could scream I am so fed up of feeling so so tired, exhausted and like I could sleep for weeks!

[Spam1 in reply to SeasideSusie]

What should I do, I cant stand this - makes me feel like I am imagining it!

[QueenBee7046 in reply to Spam1]

It sounds like MTHFR.. that’s how I was when I got diagnosed with it and hypothyroid.. at that time my levels were at the very low end of normal, but conseidering my physical he prescribed thyroxine and methylated B6/9/12

[Spam1 in reply to QueenBee7046]

Hi What is MTHFR ?

[SeasideSusie Remembering in reply to Spam1]

You are going to have to help yourself as much as possible, which is what a lot of us have to do when faced with doctors who don't seem to have much of a clue. They are "reference range" driven and have no concept that just because a result is within range it doesn't mean that it's an optimal result and that we can get symptoms if levels are low. I can give suggestions for supplementing based on your results from 4 months ago. It's not ideal because it would be better if the results were current. If you want to retest that would be good, but based on your previous results this is what I would have suggested if I had seen your post at the time:

Ferritin: 55.4 (13-150)

It's said that for thyroid hormone to work properly (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

apjcn.nhri.org.tw/server/in...

I don't suggest iron tablets because iron is complicated. You'd need an iron panel to know if your serum iron was good and if it it is and you take iron tablets then you risk taking serum iron over range, and too much iron is as bad as too little. A full blood count wouldn't go amiss either as that tells you if you have anaemia. So without further tests then eating liver, etc, is the way to go.

**

Vit D: 53.8nmol/L (21.52ng/ml)

The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).

**

To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 3,70000iu D3 daily (nearest is 4,000iu)

vitamindcouncil.org/i-teste...

Retest after 3 months.

As you have Hashi's then an oral spray (eg BetterYou) or sublingual liquid can give better absorption as it bypasses the stomach. An oil based softgel may be OK but avoid tablets and capsules.

When you've reached the recommended 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/

Your GP won'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

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and 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 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 tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Check out the other cofactors too (some of which can be obtained from food).

**

Active B12: 40.2 (37.5-188)

As was explained in reply to your previous post, this is very low in range and Active B12 below 70 suggests further testing for B12 deficiency.

You have two choices

here:

1) Print off the information from Viapath, there is a link to a pdf which can be printed at the bottom of this page:

viapath.co.uk/our-tests/act...

Check here for signs/symptoms of B12 deficiency:

b12deficiency.info/signs-an...

If you have any then list them.

Take all the information to your doctor and ask for further testing for B12 deficiency/pernicious anaemia.

2) Do your own testing. Medichecks do a blood test for MMA (Methylmalonic Acid) and Viapath do them as well.

**

Folate: 4.22 (>3.89)

This is way too low and would be better in double figures. However, if you are doing further tests for B12 deficiency you can't start supplementing for this as it masks signs of B12 deficiency and skews results. You start folic acid or folate (or B Complex) after B12 injections/supplements have been started.

**

He also told me to eat 2 brazil nuts a day

If the packaging on your brazil nuts state "Grown in selenium rich soil, in xxxxx area" they may contain some selenium. The amount of selenium varies depending on the area they are grown in so best areas are Eastern Amazon or Central Brazil. If the packaging doesn't say this then there is very likely no selenium in the nuts and the only way to know how much selenium you are taking is by supplementing with selenium l-selenomethionine or a yeast-bound selenium (not selenite or selenate).

**

So these all need addressing to start with.

In your previous post SlowDragon also gave you information and links about Hashi's and coeliac.

[Spam1 in reply to SeasideSusie]

Thanks, ok I will do this, but I am at the moment not being taken seriously as having any thyroid issues.

[SeasideSusie Remembering in reply to Spam1]

If we can see your actual thyroid results with reference ranges, we may be able to give more helpful information in that direction.

[Spam1 in reply to SeasideSusie]

the ones I had done and took with me to the endo are posted earlier in my other posts., I can't find the pic to repost - sorry !

[SeasideSusie Remembering in reply to Spam1]

I'm talking about the ones you mentioned in your opening post in this thread, where you said

The Thyroid tests are normal - I haven't seen the results

and I suggested you ask for a copy of the results with the reference ranges.

[Spam1 in reply to SeasideSusie]

Hi Thats because they havnt given them to me - so hoping I may get them soon

[SeasideSusie Remembering in reply to Spam1]

Yes, I understood that, which is why I suggested in my original reply that you asked for them.

[Spam1 in reply to SeasideSusie]

ok thanks

[shaws Administrator in reply to Spam1]

SeasideSusie has given her usual excellent responses. Don't take to heart the doctors' attitudes as it is common. In fact I had to diagnose myself and by that time my TSH was 100 (which if it is over 10 in the UK we'll be diagnosed. In other countries a TSH above 3+ will get a diagnosis) Mine never noticed my extremely high TSH at all and phoned to tell me there wasn't anything untoward in my 23 blood results he'd just received.

[humanbean]

The "Endocrine Bible" is worth saving a link to.

imperialendo.com/for-doctor...

Personally I prefer to use the PDF version.

imperialendo.co.uk/Bible201...

The test you mention is (probably) the Short Synacthen Test which you can find described in the second link above on pages 68 - 70.

Be aware that many endocrinology departments don't do the ACTH part of the test and they really should. There are several different types of hypoadrenalism (aka adrenal insufficiency aka low cortisol), which are described here :

en.wikipedia.org/wiki/Adren...

To diagnose primary adrenal insufficiency I think only a measurement of cortisol is needed. But if you have secondary adrenal insufficiency then a measurement of ACTH is required to diagnose it (as well as the cortisol measurement!). So make sure before you start the test that ACTH is going to be measured as well as cortisol. It would be worth finding out the day before the test rather than having an argument on the day of the test.

Make sure your test is done at 9am (or 8am - 9am). A later test is not accurate because cortisol production has a circadian rhythm with the highest production being around 8am - 9am.

On the day of the test get up in plenty of time, don't get stressed, don't be late for your appointment and have to rush, don't get into arguments, talk as little as possible, don't chat or gossip, and some people suggest fasting overnight and drinking only water overnight and before the test. Caffeine can affect adrenals, so avoid. If you ever have to repeat this test make sure timing and conditions are kept as similar to the conditions for your upcoming test to maximise the comparability of the tests.

Good luck.

[Spam1 in reply to humanbean]

Many Thanks. I am awaiting a letter to confirm the appointment and the exact tests. Thanks for your advice. x

[shaws Administrator]

I agree with SeasideSusie i.e. that 'normal' doesn't mean that you feel 'normal' and we do wonder why we feel absolutely awful after beginning levothyroxine (or other thyroid hormones).

Ask GP to give you a print-out of your results, with the ranges for your own records (we are entitled by Law). The majority of hypo patients do fine on levothyroxine when on an optimum dose, but it is a gradual increase of 25mcg every six weeks until we feel symptom-free and 'normal health'.

As you have some deficiences in minerals/vitamins these have to be optimum and ask GP to test for Pernicious Anaemia test to your low B12. Pernicious anaemia is another autoimmune disease and I have that as well as hypothyroidism. Usually we can have several autoimmune conditions if we develop one.

[Spam1 in reply to shaws]

Hi

I will do this, but I have taken those previous tests to all dr appointments and they say they are ok ! I tell them I am not and it seems to fall on deaf ears! I will ask about pernicious aneamia too. Thanks for your support.

[shaws Administrator in reply to Spam1]

Unfortunately the professionals take no notice of results we bring in from other labs. They are 'happy' just to go by their 'knowledge' which is very limited, i.e. take TSH for instance - if it is somewhere 'in range' once we start taking levothyroxine they don't think we need an increase and our symptoms don't resolve. They are unaware that a TSH of 1 or lower is preferable but somehow they think we have gone 'hyPERthyroid' and reduce dose. It is more than ridiculous.

Once-upon-a-time, before levothyroxine along with blood tests were introduced and overtook clinical symptoms and 'natural dessicated thyroid hormones' which levothyroxine replaced i.e. levo is T4 alone whereas NDT is T4, T3, T2, T1 and calcitonin. (all doctors used to know ALL clinical symptoms and we got a trial of NDT. If we improved we stayed on it.

Levothyroxine should be increased by 25mcg every six weeks until the TSH is 1 or lower (doctors happy if it is 'somewhere in the range' but we don't feel well).

Another two important tests are the 'frees', i.e. Free T4 and Free T3 and these are rarely tested.

Also all vitamins/minerals have to be optimal. i.e. B12, Vit D, iron, ferritin and folate.

I had to diagnose myself and then eventually had to source my own thyroid hormones. I am well now thanks to Thyroiduk and that's before this forum began. Don't expect doctors to have any knowledge unless they or one of their family members have hypo.

[shaws Administrator]

You can pop over to the pernicious anaemia forum and enquire how the best way to get a P.A. blood test. It is a specific test. I believe they test for the 'intrinsic factor' but again, I am not medically qualified in any way.

[Teresamarie]

Hi Spam1, I couldn’t have said it better than humanbean about the synacthen test. I really felt like you describe in your post about being so 😴 tired. I was diagnosed with secondary adrenal insufficiency and stared on hydrocortisone. It really sounds scary, and at times it is, but once on the meds it helped almost immediately. That was in 2014. In 2018 I was diagnosed with hypothyroidism. Now the thyroid has been a real struggle. So I’m not a doctor but I’ve found as all the good people on this community have that patience is the word of the day. Be kind to yourself......

[Spam1 in reply to Teresamarie]

Thank you so much . Just so sick of being so tired and it’s making me feel low x thanks for everyone’s support x

[Teresamarie in reply to Spam1]

I hear where you are coming from. I’m tired of dragging myself around with no energy and poor health. But what’s the choice I guess. People love us and we go on for them. My thoughts are with you. 🙄