I have had my results back from a recent check and before I have a follow up appointment I was hoping you might be able to advise me on what my optimal results should be (because most of them say I am "normal"/ within range).
I should say, before I post results, that I have stopped taking Levo. I was on 150mg with a TSH of 2.15mIU/L (.27-4.20) and >600 TPO ku/L (<34.00) but still feeling horrendous so we bit the bullet and paid to see Dr Peatfield privately. He concluded that I was suffering from adrenal fatigue, most likely from teenage Glandular Fever that left me with CFS for years). He put me on an adrenal support and reduced my Levo to 25mg. I didn't see a huge change to my energy levels but I saw a HUGE change to my clouded mind. He then got ill again and I haven't been able to revisit him, but simultaneously got nervous that the doctors just wouldn't understand what he was trying to achieve.
My symptoms haven't changed, although haven't got worse despite no longer taking Levo, in 2 years though so I finally went back to the doctors to have all my level checked again, but will probably still have to have a few privately as he refused to test for T3 or Tg antibodies.
TSH 6.66 mIU/L (0.27-4.20) [previously 2.15 with 150mg Levo)
FT4 9 pmoI/L (12.00-22.00) [previously 15 with 150mg Levo]
T3 not tested [previously 4.7pmoI/L (3.10-6.80) with 150mg Levo]
TPO 291 iu/mL (<34.00) I have spent the last few months cutting out histamine foods to great effect
Serum cortisol 295 nmoI/L (137.00- 429.00)
DHEA not tested
D2 + D3 48 nmoI/L (50.00-200.00)
Magnesium 0.89 nmoI/L (0.70-1.00)
Ferritin 21 ug/L (13.00- 150.00)
Folate 5 ug/L (2.40-17.50)
B12- awaiting result
Progesterone 4.2 nmoI/L (0.4- 38.1 mid cycle)
Oestradiol 652 pmoI/L (151-1462 mid cycle)
As well as thyroid issues I also suffer from endometriosis & PMDD. My worst energy slumps are at 10am and 3-4pm, then often insomniac/ hyper in the evening, I have lock jaw, restless legs, twitchy fingers, and constant phlegm in my throat. My Mum has MS.
I have a 6year old and I don't want her to grown up thinking my super power is sleeping- but it's almost impossible to get a referral to someone who can join up all the dots. My last endocrinologist appointment was with a diabetes specialist who referred me for a phsyc evaluation- he thought my level of upset and concerns about the links between autoimmune responses was cause for concern. I am only 42, but often feel like I'm trapped in the body of someone twice my age- in fact know lots of 80 year olds with far more spark than I have ever had!
My thanks in advance for reading such a lost post. Any advice, so I can go into the doctors prepared would be most appreciated.
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Mrsdafox
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Dr Peatfield has now retired and there doesn't seem to be anyone else like him
When Dr P suggested adrenal fatigue and put you on adrenal support, did he suggest doing a 24 hour saliva adrenal test?
Are you still taking the adrenal support?
When taking it then it's important to keep an eye on your levels so that you know that you still need the support and whether you need to alter the dose.
If not recently done then I'd suggest doing a test with Regenerus which tests both cortisol plus DHEA:
Your current thyroid results show over range TSH and below range FT4 which, as you know, is hypothyroid. The raised antibodies confirm autoimmune thyroid disease as the cause, so your immune system is gradually attacking and destroying your thyroid and your results suggest you need thyroid hormone replacement.
Have you tried a strict gluten free diet and supplementing with selenium as some Hashi's patients have found this helps.
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Hashi's can cause gut/absorption problems and often leads to low nutrient levels or deficiencies and this is shown with your results:
D2 + D3 48 nmoI/L (50.00-200.00) = 19.2ng/ml
This is below the "sufficiency" level but your GP is unlikely to prescribe, even if he did it wouldn't be enough as they tend to only prescribe 800iu for that level.
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 4,900iu D3 daily (nearest is 5,000iu)
As you have Hashi's, for best absorption an oral spray is recommended (eg BetterYou) although some Hashi's patients have found they also do well with an oil based softgel (eg Doctor's Best).
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:
Doctors don'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
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.
Check out the other cofactors too (some of which can be obtained from food).
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Magnesium 0.89 nmoI/L (0.70-1.00)
This is an unreliable test and most of us are low in magnesium anyway. The magnesium as a cofactor of D3 mentioned above will help.
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Ferritin 21 ug/L (13.00- 150.00)
This is low in range and ferritin is recommended to be half way through range.
Low ferritin can suggest iron deficiency anaemia so ask for a full blood count and iron panel.
You may be prescribed iron tablets, if so then take each one with 1000mg Vit C to aid absorption and help prevent constipation. Iron tablets should be taken 4 hours away from thyroid meds and 2 hours away from other supplements and medication as it affects their absorption.
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
but you still need testing for iron deficiency anaemia, or iron deficiency without anaemia.
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Folate 5 ug/L (2.40-17.50)
This is low in range, folate is recommended to be at least half way through range so that's 10+ with that range.
Your GP wont prescribe as you're within range so you could eat lots of folate rich foods and also take a B Complex containing methylfolate not folic acid, consider Thorne Basic B, Igennus Super B or a Whole Food B Complex.
However, wait until your B12 result comes back. If this is low in range or below range you should check for signs of B12 deficiency:
and be tested for B12 deficiency/pernicious anaemia.In this case you should not take folic acid or folate supplements before further testing of B12 as it masks signs of B12 deficiency/pernicious anaemia.
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I'm afraid I can't help with the sex hormone results.
wow, thank you for such a detailed response. Lots to work through.
Yes, Dr P did suggest a saliva test- but to be done before I saw him next, which didn't happen before he retired. I have stopped taking the adrenal support.
I just don't know where to go next- it feels like banging your head against a brick wall with the GP. He refuses point blank to recognise that it might be a T3 conversion that I am struggling with and Hashis has never been officially diagnosed.
I fear that all that they will do next is put me back on to Levo until that particualar level is within range again. Not only do I not think that is the route cause I don't think the range is low enough, from what I've read. Do you know if there is any way I can calculate what my levels should be?
Thank you again for your incredible advice/ links x
and they'd also probably have FT4 around mid-range +.
But for those of us who are hypothyroid it's different. When on Levo most hypo patients feel best when TSH is 1 or below with FT4/FT3 in the upper part of their ranges, if that is where they feel well.
So we can't calculate where our levels should be, when on Levo we take the dose we need to feel well, but that's made difficult because most doctors only look at TSH (a pituitary hormone) and not the actual thyroid hormones.
There is another excellent Prof in Endocrinology based in Oxford. I’ve seen him a couple of times. He was recommended to me by an administrator on here. He cured me within 2 consultations. I have had adrenal insufficiency and I am a poor converter if T4 to T3. I have had the DIO2 gene test with a positive result. What fixed my poor cortisol results and thyroid levels was being prescribed T3 medication. It has been nothing short of a miracle.
If you want his details and can get to Oxford please message me. I traveled from Chester it was worth every mile to get my life back.
Hi McPammy, sorry for the tardiness in reply- after an incredibly unproductive (although expected) follow up with my doctor, who basically said everything was fine as far as he was concerned so no need to refer onwards, and then a sudden death in the family I fell into a bit of a hole. Back on the horse again! I would love the details of the Oxford Endo please, thank you! x
I just read your post of 3 years ago so you are quite younger than I thought ... You could have a hormone imbalance so I would see a Consultant if I was you. Having said that it could be because your thyroid isn't working properly that can affect your hormones and you might find they become normalized once you have your thyroid disease under control. When I first got Graves' disease I didn't have a period for 6 months but then I had a continuious period for about a year which kept stopping and starting I was perimenopausal as well at 48 years of age. I am now 60 so I have gone through the menopause now.
Hi Lora, sorry for the tardiness in reply but thank you for your response. I am nearly 43 and very possibly peri menopausal, although I feel I have had problems with hormonal imbalance for some years. My GP told me my sex hormone results were "fine", but I had them done again privately on day 21 and I am most certainly estrogen dominant- into the red. My periods have always been horrendous (endometriosis) but this definitely makes sense of the last year or so. I'm giving up hope on the NHS and going to seek out an alternative x
Being perimenopausal can go on for years. I actually didn't go through the menopause until I was 55. All my symptoms were caused by my thyroid. I do think you are hypothyroid and need treatment for that. Are you still not taking any Levothyroxine? because you will continue to feel ill without taking any thyroxine imho.
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