TLDR: First time poster diagnosed Hashimotos and POI, investigating IBS which is potentially also autoimmune cause. Fatigue, depression and anxiety are ruining my life. Low Adrenal Index Test results so considering self-medicating with Bovine Adrenals. High TSH and anti thyroid antibodies, but low-end-of-normal T4 and T3 - should I also take NDT? Would prefer to work with a practitioner and be prescribed and monitored, so I would be very grateful for any links to an open minded endocrinologist I could consult or any recommendations for a functional medicine practitioner who specialises in Thyroid/adrenal/autoimmune. I would also love to know if anyone has been able to lower anti-thyroid antibodies in a natural way (i.e. without immuno-suppressants).
The full story:
I was diagnosed with Hashimoto's Thyroiditis (the non-goitre one) just over a year ago by an endocrinologist in France. My partner and I were trying to get pregnant since I was 33 (I'm 38 now), and I got the diagnosis (including POI) through investigating my infertility to see if I was a candidate for IVF (I'm not). I was missing periods and having symptoms since I was about 33, but I struggled to get help in the UK. Luckily I was living in France for a few years recently, so could get some answers!
But, I'm back in the UK now and really struggling with depression, fatigue, headaches, joint aches and pains, anxiety, thinning hair. My symptoms are impacting my work, my relationship with myself and my partner. In addition, I'm being investigated currently for IBS (or worse) as I've been having blood in my stools off and on for about a year - with all obvious causes ruled out (it seems to be most linked to stress). I'm working through the GAPS intro diet at the moment to try to heal my gut and I have a Sigmoidoscopy booked in April.
I saw my UK GP recently about my symptoms and test results (which I got privately) and they prescribed me HRT, Fluoxetine, and Levothyroxine. I'm not taking any of these medications currently as I just don't trust the prescription - he made some errors in what he was saying - he didn't know what DHEA is, for example. I was taking DHEA for fertility for a few years and it definitely improved my symptoms. I stopped taking it about a month ago as I want to start from scratch and really figure out what I need to feel well again.
I asked to be referred to an Endocrinologist, but my GP said there wasn't any point and they would probably just say what he said and be confused as to why I was referred. I'm not averse to taking medication, but I don't want to get it wrong. If I'm going through menopause, plus low functioning adrenals, and gut issues, I don't want to take all the things and potentially make things worse - I'm already struggling to keep up with work and life.
My TSH has been high for the last few years since beginning testing in France, but my T3 and T4 seem normal, as well as my day 21 Oestrodiol (460pmol/L) and Progesterone (45.6nmol/L) tests. So I'm not sure I need medication to increase levels. All my nutrient tests came back in the normal range (Ferritin, Iron profile, Folate, etc.).
I'm considering starting supplementing bovine adrenals, but I would prefer this to be prescribed and to work with a therapist, but I have no idea how to find a doctor or endocrinologist who would work with me in this way. And if I were to need Thyroid medication, then I would prefer NDT. So my first request if anyone has any information about an endocrinologist who is open minded in this way - or even a functional medicine practitioner who is a specialist in Thyroid/adrenal/autoimmune.
Here are my recent Thyroid and Adrenal Index Test results:
TSH: 5.19 mIU/L (Normal Range 0.27 - 4.2) - three months ago it was 6.7
T3 Free: 3.8 pmol/L (Normal Range 3.1 - 6.8)
T4 Free Direct: 14.7 pmol/L (Normal Range 12 - 22)
TPO: 134 IU/mL (Normal Range 0 - 34)
TGO: 598 IU/mL (Normal Range 0 - 115)
Adrenal Index Test (most were the low end of normal and Cortisol 3 was low)
Cortisol 1: 6.5nmol/L (ref range is 3-16)
Cortisol 2: 12.4 nmol/L (ref range is 9-26)
Cortisol 3: 3.7 nmol/L (ref range is 5-19)
Cortisol 4: 3.2 nmol/L (ref range is 3-9)
Cortisol 5: 0.8 nmol/L (ref range is 0.5-4)
Cortisol Daily Total: 26.6 nmol/L (ref range is 20.5 - 74.0)
DHEA am: 0.61 nmol/L (ref range is 0.45 - 2.38)
DHEA pm: 0.34 nmol/L (ref range is 0.26 - 1.41)
Cortisol to DHEA ratio is very slightly high: 42.2 (ref range is 25-42)
Thank you so much to anyone who has read this and for any and all responses received ❤️
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KayNaomi
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I'm pretty sure the thyroid test was done in the morning and I haven't taken Levothyroxine, so that won't have impacted the results. I will remember your tips for next time and make sure to do before 9am in fasted state.
Folate is: 12.5 (ref range is above 2.9 ug/L)
Ferritin is: 47 (ref range is 13 - 150 ug/L)
Vitamin D: was not tested - I will buy a test
Vitamin B12: 641 (normal range is above 178 ng/L)
I'm not taking any vitamins currently - only a probiotic (prescript assist) , CoQ10, occasionally magnesium.
Thank you again for all the information - will work my way through the links.
Thank you - I eat a diet pretty high in red meat (something between GAPS and AIP/Paleo diet) and green leafy veg, so I would have expected better results...
I did get a CRP test, it was <1 (Normal range: below <=5 mg/L)
Gut issues, IBS, low stomach acid, H Pylori, SIBO etc extremely common hypothyroid symptoms
NICE guidelines clear, with high thyroid antibodies GP should run test for coeliac……have they?
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
I've been tested for Coeliac but I was already on a gluten free diet, so I'm not sure how accurate it will have been! I've been gluten free now for at least two years and it has helped. I know I'm sensitive to gluten as I would get obvious symptoms. I'm currently working through the GAPS introduction diet (like an elimination diet) to see if I have other sensitivities.
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
Understand that you won't get NDT prescribed on the NHS, its an unlicensed medication. Also its pretty expensive, supply can be difficult at times and batch consistency can be an issue.
Most people try Levo first and the majority do well on Levo so long as they get enough of it and get all vitamin levels to OPTIMAL, not just in range.
The NHS will begin treatment when you have 2 TSH results above range. Long term its much better to get a diagnosis or at least have your GP on board with your private treatment.
Anyone with a high TSH will have struggling adrenals.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Thank you - I did try to research what optimal vitamin levels are, but could only find the reference ranges - will do some more digging.
I was diagnosed with Hashimoto's in France and I showed my GP the documents, but I'm not sure that I have the diagnosis on my record here.
Thanks for the advice - I'm already gluten free for about 2 years now and it did help. I got some vits tested, but I need to test Vitamin D. Thanks again
All my nutrient tests came back in the normal range (Ferritin, Iron profile, Folate, etc.).
Please add actual results and ranges
they prescribed me Levothyroxine
So GP has prescribed levothyroxine ……How much and which brand
Standard starter dose is 50mcg
You should retest 6-8 weeks after each dose change or brand change in levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
Thank you - appreciate such a thorough response! At my last GP visit a few weeks ago he said to start on HRT first for a few weeks, then to come back for a Levothyroxine prescription - which would probably be starter dose. But, I don't want to take HRT yet as I'm still getting occasional periods and I think my Oestrodiol and Progesterone aren't that low.
I would also love to know if anyone has been able to lower anti-thyroid antibodies
Thyroglobulin antibodies will reduce as TSH drops on levothyroxine.
TPO antibodies frequently reduce slowly on gluten free/dairy free diet
The antibodies are not causing issues…..they are the “Hoovers” cleaning up after autoimmune attacks
They are merely indicating that the cause of your hypothyroidism is autoimmune
Adrenals should slowly improve as dose levothyroxine is increased
NDT can actually increase thyroid antibodies in some Hashimoto’s patients
Standard treatment is to get started on levothyroxine, slowly increasing dose until on full replacement dose after several months. Meanwhile maintaining optimal vitamin levels to help get best conversion rate of Ft4 (levothyroxine) to Ft3 (active hormone)
Trial strictly gluten free and/or dairy free
If, once Ft4 in near top of range, if Ft3 remains low, then is time to consider possibly adding small dose T3 (liothyronine) prescribing alongside levothyroxine
This is increasingly available via NHS, though you may need to initially get trial privately
Hi there, loads of good advice in all these comments. If you've been prescribed levothyroxine I would advise you to take it especially as you've been suffering for years. It might be man made but it is bio-identical to the human thyroxine hormone (T4). NDT is not quite the same as the human thyroid hormones and is generally a choice down the line when levothyroxine, and liothyronine (T3) have been tried. NDT suits some people, but not all. Just taking the levothyroxine should significantly improve many of your symptoms. I can't comment on the adrenals.
Thank you for the advice - appreciate it! I was planning on taking NDT instead of Levothyroxine, but I didn't know that it's something used later down the line and might not work as well.
I was diagnosed, but the endocrinologist said for me to test every six months and if my TSH was over 4, to start on Levothyroxine. But then I moved back to the UK and when I got my next TSH test it was 6.7. My GP said they don't normally prescribe Thyroid hormone unless it's higher than this, but I could have it if I wanted. Because I thought my T4 and T3 were in the normal range, I thought I didn't need it and the GP also gave me the impression that it wasn't necessary. They offered me antidepressants for fatigue/depression etc.
My GP said they don't normally prescribe Thyroid hormone unless it's higher than this, but I could have it if I wanted. Because I thought my T4 and T3 were in the normal range,
Guidelines are clear that if symptoms with two TSH results over 5 you should be offered at least 6 months trial on levothyroxine
It’s not a medication, it’s a replacement thyroid hormones that your body is no longer producing enough of
with diagnosis of hypothyroidism you qualify for free prescriptions
That's great - thank you, I didn't know that. I'm going to go back to the doctors and say I don't want the HRT (yet!), but I do want the Levothyroxine prescription - and I will take note on your other post which brands and hopefully find one that works well for me. Thanks again 🙏🏼
High TSH and anti thyroid antibodies, but low-end-of-normal T4 and T3 - should I also take NDT?
I just wanted to check that you understand that elevated TSH and low frees (T3 & T4) is entirely consistent with having an untreated, under active thyroid? Your use of the subordinating conjunction - ‘but’ - makes me wonder whether you’ve understood how the condition presents.
Coupled with your positive antibodies, myriad symptoms, it’s quite clear that you have hypothyroidism. If I were you I’d start the levothyroxine but look also into ways to support your adrenals, which have probably been taking up the slack for whilst your thyroid has been struggling. There’s plenty of advice on the forum. A good entry-level way is adrenal cocktails.
Everything you’ve mentioned in terms of long-standing and current symptoms is consistent with having a thyroid condition.
Very best of luck with the bowel investigations. Take care.
Thank you. What's an adrenal cocktail? Can you recommend anything?
And no, I didn't know that means I have an under active thyroid - My GP said they don't normally prescribe Thyroid hormone unless TSH is higher (than mine, which was 6.7 at that meeting), but I could have it if I wanted. Because I was told my T4 and T3 were in the normal range, I thought I didn't need it and the GP also gave me the impression that it wasn't necessary. They offered me antidepressants for fatigue/depression etc. instead - which I didn't take. I've been feeling really overwhelmed with it and trying to learn as much as possible
Bless you, it’s a lot to take in. But you’ve got lucky finding this forum.
An adrenal ‘cocktail’ is a concoction which supports struggling adrenals. Many make them with orange juice, good quality salt and potassium, in the form of cream of tartar or coconut water.
I do the following, in the morning:
A glass of orange juice (for the vit C), half a teaspoon of salt (for the sodium), half a teaspoon of cream of tartar (for the potassium). I sometimes add coconut water but I only like the Innocent brand and it’s usually very expensive. Coconut milk from a tin works well and makes the drink creamy.
My TSH has been high for the last few years since beginning testing in France, but my T3 and T4 seem normal
TSH: 5.19 mIU/L (0.27 - 4.2) - three months ago it was 6.7
T3 Free: 3.8 pmol/L (3.1 - 6.8)
T4 Free Direct: 14.7 pmol/L (12 - 22)
Sorry, but your FT3/4 are anything but normal. Your FT3 is only 18.92% through the range, and your FT4 not much better at 27.00%. 'Normal' would be both around 50%, with the FT3 just slightly lower than the FT4. What's more, they are only as high as they are because of the abnormal amount of stimulation the thyroid is getting through the TSH (Thyroid Stimulating Hormone).
Plus the high antibodies which mean that things are going to get worse, not better as your thyroid is slowly destroyed. (By the way, Hashi's without the goitre is actually Ord's thyroiditsi. But it works the same and the 'treatment' is the same.)
So, yes, you really, really do need to take the levo. That will reduce your TSH and raise your FT4 - and hopefully raise your FT3, too.
I saw my UK GP recently about my symptoms and test results (which I got privately) and they prescribed me HRT, Fluoxetine, and Levothyroxine.
On the other hand, I can understand your reluctance to take the HRT and fluoxetine. Did he test your sex hormones before prescribing HRT? No point in taking that unless you're menopausal. And Fluoxetine is an anti-depressant - something they fling around like sweeties when the depression is more than likely due to low T3. And, from what I've read, Fluoxetine is one of the worst ones to take. You would probably be better taking the levo and see how things go, rather than rushing in to take those two drugs. But, you do need the levo.
Thank you. My hormones seemed to be in the normal range with the tests for Oestrodiol and Progesterone, but I do have premature ovarian insufficiency and perimenopausal - still having periods, but not for months. And I'm pretty sure I'm mostly depressed because I feel so rubbish!! He didn't check my hormone test results (which were from 6 months ago: day 21 Oestrodiol (460pmol/L) and Progesterone (45.6nmol/L)) before prescribing.
Well, I don't know a whole lot about menopause and sex hormones so I can't comment on those results. But depression is a hypo symptom. Of course, feeling ill doesn't help, but I'm willing to bet your depression will go once you raise your FT3 level.
Can I add that just being somewhere in a range is not OK - and if we were talking exam results you would likely want to see your results at least over 50% and probably up at around 75% to get a credit.
I take adrenal glandular and NDT - but I am self medicating as I can't afford to go privately and the NHS refused me both NDT and T3 thyroid hormone replacements and I am post RAI thyroid ablation so without a fully functioning thyroid due to NHS medical intervention.
Thyroid UK - the charity who support this forum - hold a list of recommended thyroid specialists and endocrinologists and it might make sense to contact admin at thyroiduk.org asking for same - many still offer video consults so distance does not need to be an issue and you could also consider searching for a ' functional medicine ' provider.
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