What to do next, advice about treatment please,... - Thyroid UK

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What to do next, advice about treatment please, sensitive to everything

Roxanne73 profile image
Roxanne73
โ€ข16 Replies

Hi everybody,

I live in the Netherlands, but this forums seems so knowledgeable so I'm trying my luck here, I would be grateful if anyone could advice.

I have what is considered normal blood results, but severe hypo symptoms (some of them started years ago) and I seem to get new symptoms every week so I need to do something and soon.

I have very low body temperature (35.5-36.2), always frozen, get colds and respiratory infections all the time, low pulse, bad fatigue (cannot work), diziness, brain fog, poor memory, swollen face, some edema in my ankles, tinnitus etc.

These are my results. I have also done a cortisol saliva test and the values were all low, some under range.

TSH 1.8 1.7 1.5

Free T4 (10.0-26.0 pmol/L) 16.9 17.2

Free T3 (2.6 -6.0 pmol/l) 4.3 3.9

Antibodies TPO (<34 IU/ml) <9

Reverse T3 (0.22-0.54 nmol/l) 0.25

Vitamine D (> 50 nmol/l ) 52 80

Vitamine B12 (130-700 pmol/l) 343 383 643

Folic acid (>8.8 nmol/l) 30.2

Iron (10-25 umol/L) 15 17

Ferritine (13-150 ug/l) 58 73 54

Transferrine (1.8-3.6 g/l) 2.26 2.38

Saturation % (20-60) 31

LIBC (24-54 umol/l) 34

TIBC (45-81 umol/l) 49

A naturopath dr prescribed me NDT (Danish Thyroideum), but being very sensitive to all kinds of medications, I took a very small dose once and had migraine for 2 days so I stopped. The naturopath doesn't know much about thyroid and I have no other dr who I can ask.

What should I do? Give one more chance to the NDT and take a higher dose? Should I try Levo, or T4/T3 or T3? (I intend to buy online).

I have supplemented with B12 sublingual, Mg, D vitamin, vitamin powders etc.

What should I try for the adrenals? I have tried glandular (Adrenal cortex) and it made me feel weird. I have tried Ashwaganda, same results. Is it safe to start thyroid meds without trying to get my cortisol up first?

I don't know what to do and what to try any more. Since I seem to be so sensitive, should I try very small doses of everything and then increase?

Thank you for your help.

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SeasideSusie profile image
SeasideSusieRemembering

Roxanne73

Your results are very difficult to understand, all your numbers are bunched up together with no spaces between them. So that members can comment accurately, perhaps you can make them clearer.

Can you also please add the units of measurement for Vit D and B12 as these can differ and we need to know how to interpret the result properly.

If your cortisol is low, then Ashwaganda is known to lower cortisol so wont be the correct supplement to take.

Roxanne73 profile image
Roxanne73โ€ข in reply toSeasideSusie

Thank you Susie, I have now made the values clearer (hopefully).

I thought Aswaganda would lower high cortisol and increase low cortisol, but it really made me feel worse so you are correct most probably.

SeasideSusie profile image
SeasideSusieRememberingโ€ข in reply toRoxanne73

Thank you :)

TSH 1.8 1.7 1.5

Free T4 (10.0-26.0 pmol/L) 16.9 17.2

Free T3 (2.6 -6.0 pmol/l) 4.3 3.9

These are euthyroid (normal). TSH is where one would expect to see it in a normal healthy person (probably no more than 2), FT4 might be considered a little low at around 45% (maybe expect that to be around 50% through range or a bit higher in a normal healthy person) and your FT3 is around the 40-50% mark. So all in all, if these tests were done when you weren't taking any thyroid meds, they're not too bad.

TPO antibodies are low. It might be worth testing Thyroglobulin (Tg) antibodies. Sometimes we can be negative for TPO but positive for Tg.

Vitamine D (> 50 nmol/l ) 52 80

The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L so you might want to consider improving that.

Folic acid (>8.8 nmol/l) 30.2

That result is fine. Do you supplement?

Vitamine B12 (130-700 pmol/l) 343 383 643

Not sure which is the current level. 643 is fine, 343 is on the lowish side.

Ferritine (13-150 ug/l) 58 73 54

For thyroid hormone to work properly (that's our own as well as replacement hormone) it's said that ferritin needs to be at least 70, preferably half way through range. Eating iron rich foods will help, liver, liver pate, black pudding and other food listed here apjcn.nhri.org.tw/server/in...

For optimal levels of iron panel, see here to compare yours web.archive.org/web/2018083...

Looking at adrenals might be your next step. Despite what it says about Ashwaganda and other adaptogenic herbs being "balancing", it's generally the case that they lower cortisol. Adrenal cortex and adrenal glandulars are what tends to raise cortisol.

Roxanne73 profile image
Roxanne73โ€ข in reply toSeasideSusie

Thank you so much for your answer ๐ŸŒน. I have read TSH might become surpresed for different reasons and I wonder if it's not my case. It was 2,5 years ago when I went to the dr because of fatigue, but I am much worse now with a "better" TSH.

The last level is the most recent B 12 level after suplementing with sublingual B 12. I don't supplement with folic acid, have no idea why the value is good :)

But as you say I guess it makes sense working on adrenals first since the problem is more obvious there. It's easy to get confused as some people advice the opposite ( Paul Robinson).

Do you know if glandulars surpres adrenals the way NTD surpreses thyroid? Would it be ok to start on tiny doses since I am so sensitive and then gradually increase or can that mess things up?

SeasideSusie profile image
SeasideSusieRememberingโ€ข in reply toRoxanne73

Do you know if glandulars surpres adrenals the way NTD surpreses thyroid?

Not quite sure what you mean by "the way NDT suppresses thyroid"? Do you mean giving a low TSH? Taking thyroid replacement is necessary if your thyroid doesn't produce enough naturally, so if you're taking NDT then your thyroid was underactive and wont come back to life. Taking enough of any thyroid hormone replacement will give a low TSH because the pituitary (which sends the signal TSH to the thyroid to produce hormone when it detects there isn't enough) is detecting enough thyroid hormone.

Adrenal glandulars are mean to support the adrenals. Maybe the adrenals will eventually be strong enough without support, maybe they always will need support. I can't answer that.

Would it be ok to start on tiny doses since I am so sensitive and then gradually increase or can that mess things up?

Given your sensitivity, I would definitely start on the smallest dose possible and increase gradually by very small amounts. It may take a long time but hopefully you will eventually feel the benefit.

Roxanne73 profile image
Roxanne73โ€ข in reply toSeasideSusie

Thank you again ๐Ÿ˜Š. By suppressing I mean the gland itself producing even lower hormone levels after NTD is introduced for example, and that is the reason you cannot take a small dose, but you have to take a dose that is high enough. I think I read this in STTM.

SeasideSusie profile image
SeasideSusieRememberingโ€ข in reply toRoxanne73

Oh, I don't read STTM.

I don't know whether natural production will eventually fall after years of taking replacement hormone, I suppose it's possible. I know that originally when I was diagnosed (1975) gradual increases were made and adjustments of 25mcg Levo up or down (which I now know could have been due to timing of blood test giving a difference in TSH level) and I settle on 125 or 150mcg. By 2000 something was going wrong and no amount of increases helped, then eventually I found out conversion was poor, so now take less Levo plus some T3. We may still have some natural hormone production after this length of time, but who knows how much. We need what we need.

Hashihouseman profile image
Hashihouseman

You could well need to investigate adrenal sufficiency, with a good endocrinologist and not just by a static saliva or blood test, the acth or short synacten test seems to be an essential part of testing for adrenal sufficiency and helps determine whether it is safe to raise thyroid hormone activity - because driving the adrenal system with thyroid hormone could seriously stress already insufficient adrenal capacity.....?

Roxanne73 profile image
Roxanne73โ€ข in reply toHashihouseman

Thanks, getting to an endo is not easy with my blood results, but I'll try again I guess...

Roxanne73 profile image
Roxanne73

Thank you. Would that mean suplementing with Magnesium? (I already do that). I'll take a look in that group anyway.

Roxanne73 profile image
Roxanne73

Thank you, do you have a link for "real" vit C? I was not aware there are different kinds, I just take Solgar Esther vit C

SeasideSusie profile image
SeasideSusieRememberingโ€ข in reply toRoxanne73

If you Google "Wholefood Vit C" you will get links to tablets and powders. The purest form is powder, tablets have fillers. I use Acerola Cherry powder

timehealth.co.uk/product-ca...

They do capsules, but with the powder you can work up to how much suits you. I buy the non-organic (silver pouch) as it has a higher percentage Vit C than the organic one.

annanado profile image
annanado

Hi Roxanne

I am from Belgium๐Ÿ˜.

You have to go on diet first!!!thyroid is actually liver issue,detoxification is the most important thing to cure the root cause of it!!!!!

I mean totaal body detox;gut,liver,kidneys,...,pathogens,parasits and chelatation!!!!!

Taking hormones run to nowhere!!๐Ÿ˜•

helvella profile image
helvellaAdministratorโ€ข in reply toannanado

We do request that people posting should add links to relevant information to back up what they say.

What you have said appears to be a one-size-fits-all approach which is quite as black-and-white and unacceptable as the views of many in the medical establishment. It could easily come across as a form of blaming the patient.

StitchFairy profile image
StitchFairyโ€ข in reply toannanado

As you only joined a couple of days ago, I think it would be best if you spent time reading and learning from all the really knowledgeable members here instead of jumping in spouting drivel like that!

Roxanne73 profile image
Roxanne73โ€ข in reply toannanado

Considering my hormone levels don't seem to be that bad ( but my symptoms are), I have tried to go the route you mention and after spending a fortune on acupuncture, liver detox, ortomolecular supplements, vegan diet, paleo diet, I still didn't find a cure and I am getting worse and worse. So unfortunately it is not that easy. It might be for people who have endless amounts to spend and have access to good functional doctors. I don't. You also need to live a stress free life, and how many of us are able to do that?

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