Thyroid UK
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Advice on what to do next please? Or am I just getting old?

Hi all. I'm new to posting but have reading for a couple of months. Great source of info and most of all great comfort to know I'm not going mad or am a hypochondriac despite normal range blood results!

I won't list symptoms as they are all too common with everybody else's but I wondered if anybody out there could give me some advice as to what to do next. I've been to my GP who wants me to go back on HRT but I've taken it before with no benefit. I've also been on antidepressants which didn't help either. In any case I took them against my better judgement. I am active outdoors and eat pretty well but feel like I'm running on very low batteries which is affecting my marriage which makes me sad as we've only been married 3 years. I'm 56 and post menopausal. My long list of results taken in the last few weeks, mostly from Medichecks and which cost a fortune, are as follows.

TSH 1.57 miu/l. (0.27 - 4.2)

FreeT4 14.8pmol/l (12-22)

Total t4 86.5nmol/l (59-154)

FreeT3 4.67pmol/l (3.10-6.8)

Thyroglobulin 32iu/ml (0-115)

Thyroid peroxidase 12.5 (0-34)

Oestradiol 18.4 Pmol/l post meno less than 183

Testosterone 0.436nmol/l (0-1.8)

Dhea 2.030umol/l. (0.26-11)

Saliva cortisol (nmol/l) waking 8.57

Midday 3.25 afternoon 2.67 before bed less than 1.5

Serum ferritin 55ug/l (13-300)

B12 596ng/l 197-771)

I've been tested for coeliac which is negative and gut bacterial overgrowth which is also negative.

Routinely low morning body temperature.

Sorry for the long list but I am trying to cover everything in a desperate attempt to feel better and more like my old self- not a 2 stone overweight grump who has trouble getting out of bed in the morning with aches and pains and just wrecked. All my results seem within normal range so what's wrong with me??

Any advice or help on what to do next would be really appreciated.

Ps. I've just read a book called" feeling fat, fuzzy and frazzled" it's a really interesting read.

Many thanks for your patience in reading this!

Debbie.

23 Replies
oldestnewest

Welcome to our forum, and I am assuming you haven't yet had a proper diagnose of hypothyroidism.

I will give you some links and they will be different to what the doctor is told (they're not taught because they know none of the symptoms). They are directed to only diagnose when TSH goes to 10. Some will prescribe if TSH is just over range, in your case 4.2). Before blood tests superseded clinical symptoms many of us would have been given at least a trial of natural dessicated thyroid hormones.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

We can understand the GPs following the guidelines but they've forgotten all about clinical symptoms.

Due to your just within the bottom' of FT4 and FT3 your thyroid gland is struggling.

Tick off your clinical symptoms and also take notice of the 'interpretation of blood tests' and you will probably fit the bill for hypo.

Your ferritin is low and B12 should be towards the upper part of the range (around 1,000) - and you can supplement with B12 methylcobalamin sublingual tablets. This may help us to avoid dementia. Vitamin D hasn't been checked and it is also a prohormone like B12. It has essential work in the body. Also iron, and folate should be checked.

Blood tests should always be at the earliest, fasting (you can drink water) and if you were taking thyroid hormones you'd allow 24 hour gap between last dose and test and take afterwards.

Others will respond to the other results of your tests. I am not medically qualified and have hypothyroidism.

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Thank you so much for taking the time to reply. No diagnosis as you say and will definitely look at your links. I was low in iron a few months ago but it came up again after taking iron tablets so Gp stopped them. Maybe I need to start taking them again. Thank you again. Debbie.

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Low Ferritin - stored Iron - could be the cause of some of your symptoms. Needs to be around mid-range. it is also involved in the conversion of T4 into the Active T3 - with or without a thyroid issue. I would ask for a Full Iron Profile - best to look it up as I am not so good on Iron - hope you soon feel better.

No Folate result or VitD :-(

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Thank you so much. I will get those checked.

Debbie

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DebraT,

Thyroid results are euthyroid (normal) for someone not taking Levothyroxine and thyroid antibodies are negative for autoimmune thyroiditis (Hashimoto's).

Ferritin is optimal halfway through range. You can raise ferritin by supplementing iron with 1,000mg vitamin C to aid absorption and minimise constipation.

B12 > 500 is unlikely to be deficient but if you have clinical symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice.

Joint aches and pains can be due to vitamin D deficiency. You can order a standalone vitD test from City Assays for £28 thyroiduk.org.uk/tuk/testin...

If the HRT you originally used didn't help why not try a different make?

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Hi. Thanks so much for your help. I will definitely get vit D checked. I've tried 3 different types of Hrt over the space of 18months and none really made a difference so I stopped them. I Will also check out your links. Looking like I need to increase iron intake too.

Thanks again

Debbie.

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DebraT,

Some members prefer to use bioidentical HRT. Write a post asking for recommended makes.

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Ok Thank you. I will do that.

Debbie.

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Testing for coeliac is extremely unreliable, blood test only correct 50% of the time, even endoscopy is not 100%.

No current tests via NHS for non coeliac gluten sensitivity. You just have to try it, 100% strictly for 3-6 months .....see if it makes a difference

Low vitamin D is extremely common- get tested via vitamindtest.org.uk £28 postal test

If you are going to supplement B12, then also recommended to take a good B complex too

Remember to stop taking any supplements with biotin in (most B complex) in future 3-4 days before any tests

Biotin may falsely affect results

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

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Thank you so much. I assumed I was ok for vit D as I spend lots of time outdoors. Don't they call it the sunshine vitamin? But I will get it definitely get it checked as others too have suggested. Re: the coeliac check, thanks for the advice. I have stopped eating bread for the last week and certainly feel less bloated so I will do some more research on gluten free diets. Thanks for taking time to reply.

Debbie.

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Do you wear any kind of skin protection? Sunscreens stop vit D being produced in the skin as it blocks the activating rays. You need 15-20 mins sun on lots of bare skin (stop before going pink tho) to get good levels in UK

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Saliva cortisol (nmol/l) waking 8.57

Midday 3.25 afternoon 2.67 before bed less than 1.5

Do you have the reference ranges for your cortisol results?

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Yes, sorry forgot to put them in!

Waking 6-21

Noon 1.5 -7.6

Pm. 0.0-5.49

Before bed 0.0-1.99

Thanks for replying. Debbie.

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Waking 8.57 (6 - 21)

Midday 3.25 (1.5 -7.6)

Afternoon 2.67 (0.0 - 5.49)

Before bed < 1.5 (0.0 - 1.99)

With your last result, since there is no actual figure given, I'll assume that your result was halfway between 0 and 1.5 i.e. I'll use a result of 0.75.

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My first comment is that the reference ranges you've been given are, in my untrained opinion, highly dubious. I do not believe that a healthy person would ever have cortisol levels of zero. And yet the reference ranges for your 3rd and 4th results include zero in the range.

If you look at the Wikipedia article on cortisol, the section on Health Effects near the beginning, you'll see that it has a lot of vital uses that the body can't just "give up on" in the second half of the day. So it seems very likely to me that the results from quite a lot of sick people were included when generating the ranges.

en.wikipedia.org/wiki/Cortisol

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Optimal results for cortisol are given on this link - see example 1 :

rt3-adrenals.org/cortisol_t...

• Morning at the top of the range

• Noon approximately 75% of the range

• Evening close to 50% of the range

• Nighttime at the bottom of the range

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Comparing your results to the optimal results :

Sample 1 : Optimal = 21 --- Yours = 8.57 --- Your result is 41% of optimal

Sample 2 : Optimal = 6.075 --- Yours = 3.25 --- Your result is 53% of optimal

Sample 3 : Optimal = 2.745 --- Yours = 2.67 --- Your result is 97% of optimal

Sample 4 : Optimal = 0 --- Yours = 0.75 --- This really is nonsensical, so ignore

Totals : Optimal = 29.82 (7.5 - 36.08) --- Yours = 15.24 --- Your result is 51% of optimal

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It is clear that you are producing roughly half the optimal amount of cortisol you should be throughout the day. So you need to take something to boost your cortisol levels.

Doctors would say that your adrenal function is fine. All your results are in range. They are only interested when cortisol output is below range when they test cortisol in a morning blood test. Then they will investigate people for "adrenal insufficiency" aka Addison's Disease.

However, the average patient prefers to feel better than "nearly dead" and would suggest treating it. Patients call your condition "adrenal fatigue". Doctors think "adrenal fatigue" is non-scientific woo. So you have to help yourself.

This is a popular site : drlam.com/articles/adrenal_...

Click on the blue boxes in the banner to the right of the telephone number - About AF Syndrome, Additional AF Info, AF recovery, and the rest.

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The first thing you need is a cocktail of vitamins and minerals that help the adrenal glands to function. I would suggest you do some research on the web for "adrenal fatigue". Bear in mind that nearly all of the sites you find will be commercial sites wanting to sell you something - don't look at just one site, look at several, then shop around for good deals and good makes. Check reviews on Amazon, even if you don't buy there. Check half a dozen sites, compare and contrast, and try and come up with a list of helpful things you are prepared to buy and try. For anything you want to buy, do a google search for "best and worst forms of ..." whatever it is you are looking for. For example, magnesium supplements often contain magnesium oxide, and yet it is barely absorbable for most people. There are much better forms available.

When you decide what you want to take then ask for recommendations in a new post on the forum on brand, dosage, and where to get a good deal.

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Another thing people need for healthy adrenal function is good levels of salt. A recommended home remedy for helping the adrenals is the "adrenal cocktail". This comes in a few versions but they don't vary much. Do a search for "adrenal cocktail" and try one that you can easily get the ingredients for.

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There is an intimate connection between thyroid function and adrenal function. I think many of us would agree that thyroid function is impossible to get right if the adrenals don't function well, and the adrenals will never function well if thyroid hormone levels are incorrect. So it is essential to work on fixing the thyroid and the adrenals together. The good news is that many of the things which help one will also help the other.

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Another thing you may need to take is a glandular. These vary, but they usually involve taking tissue from the adrenal glands of pigs or cows, drying it, and converting it into capsules or tablets. Some products also include pituitary tissue as well. The biggest issue with these products (in my opinion) is whether or not they contain adrenaline, and whether or not the patient needs or can cope with extra adrenaline. Notice also that many of these products come with extra vitamins and minerals included. Whether or not you want these is something for you to consider. I prefer to decide my own dose and form of nutrients so, if I needed these, I would probably try and take one without vitamins and minerals. But opinions vary.

I'm not knowledgeable on adrenal or pituitary glandulars. I have high cortisol, not low, so I definitely don't need more cortisol.

The product names I know of are :

Nutri Adrenal

Nutri Adrenal Extra

Both the Nutri Adrenal products were best sellers, but have become unavailable, hopefully temporarily, because of some issues with getting the ingredients. I hope they come back at some point.

Adrenavive I, II, and III --- see the-natural-choice.co.uk/do...

Jarrow does a glandular I think, and so does Thorne Research

Do some searching on the forum for adrenal glandular products.

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The final thing I wanted to mention was hydrocortisone (HC). This comes in the form of tablets or cream, and is used for treating very low cortisol. I think tablets are only ever available on prescription. Very low dose hydrocortisone creams are sold over the counter for the treatment of eczema, but whether the dose is worth using for adrenal issues I don't know. I also don't know at what point it becomes a good idea to treat adrenal fatigue with HC. I know that HC is very serious stuff. The risks of over-treating and becoming dependent on it for life are very real. greygoose has experience of using HC correctly, and knows more about the dangers than me.

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I can't thank you enough for all of that information. I had thought about adrenal fatigue but didn't know what to do about it. I live in Northern Ireland and it's difficult to access the right help and appropriate treatment. Ive had enough of going to GP complaining about the same things and not getting anywhere. I know her hands are tied within an nhs framework so that's why I decided to take things into my own hands and try to 'sort myself out'. I tried ordering T3 on the internet but it didn't arrive- I assume stopped at customs- but I will certainly do some more research on AF and I thank you again for taking the trouble to reply so fully.

Debbie.

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I was going to post more or less the same doctors can't be bothered I'm feeling out of energy. Pain in my back and legs I'm wondering if I should go back on my iron tablets spend most of my time on bed and sweat too much that I can't stay in clothes longer than 3hours a day feels like a panic attack but I feel like passing out all the time Early menopause does anyone know if periods return after stoping zolidex injections I've been on them a year now and no one seems to know the answer the injection put me into menopause so if I stop does it mean I have to go through it all again as I'm 52

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Jenny, you are unlikely to get replies unless you ask your questions in a new post of your own.

This thread is for replies to DebraT.

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Back pains are usually adrenal insufficiency . Having it checked out by twenty four hour salvia testing is the best way .

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Your non-zero TPO and Thyroglobulin (I assume that means "Thyroglobulin antibodies") says, to me, that there is something in your diet (or an environmental exposure) that is precipitating autoimmunity. My personal experience is that the TPO 0-34 "acceptable" range is not. And the fact that you were diagnosed as not having celiac, does not mean that you don't have gluten sensitivity. Some suggestions:

1) Radical diet change. Get rid of grains & refined sugar. Fruits, vegetables, clean proteins, complex non-grain starches (e.g. sweet potato). Try to keep this up for 6 months.

2) Check your total blood protein. Make sure it is 7 g/dl or above, which indicates the protein digestion function of your gut is still working ok. (Lower part of the "normal" 6.2-8.3 range is not ok.) If it is low, first step is Betaine HCL and/or digestive enzymes.

3) Boost your FT3. You are about 42% up in range. Most here want to see FT3 up around 75%.

4) Try a modest dose of DHEA, say 5-10mg. I believe age-adjusted ranges for key hormones are bad medicine, reflecting the ignorance of most MDs about what "anti-aging" means. Try to get your sex hormones up to the level of a healthy 30-something female.

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Thank you so much for your advice. I live in Northern Ireland and funnily enough went in to my local health food shop yesterday who stock a good range of vitamin supplements etc. I was in search of DHEA but was told that it is unavailable in the U.K. and if I tried to order it on the internet, it would probably be stopped at customs and I wouldn't receive it. The same story for T3. I would dearly love the sex hormones of a 30year old, (which would also please my husband I'm sure as my sex drive has all but vanished!). The shop assistant said that unless I knew somebody in the USA that could post them privately I was basically stuck!

I will take on board your advice about diet and others have suggested vitamin and herbal supplements to help thyroid and adrenal glands. Will keep looking for other sources of dhea and T3.

Many thanks again

Debbie

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I use the "Douglas" brand micronized DHEA which I usually order from the US site pureformulas.com. I would not trust the opinion of the shop assistant, I would check directly with the government agency which is responsible for customs regulations. Other members of this Board who live in the UK have told me they are able to receive T3 from companies like the one in Greece, so it's not clear to me why UK customs would disallow DHEA. Or are the customs rules in Northern Ireland, different than UK?

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They shouldn't be as we are part of the UK but I will check it out anyway. She said DHEA was disallowed about 2O years ago, but I agree it does sound a bit odd. When I read about it, dhea sounded just what I need to boost my failing hormones but sure enough going to a shop and buying it was Just going to be too easy!!

I will let you know if I manage to overcome the problem!

Debbie.

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It is not illegal to buy and import T3 and other non-controlled prescription drugs for our own use.

tpauk.com/main/article/mhra...

tpauk.com/main/article/more...

There is an issue with DHEA - it may have been banned but there is a lot of confusion on the subject. I don't know why it is controlled.

This thread may be of interest :

healthunlocked.com/thyroidu...

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