I've posted a quite a bit recently as things haven't been great.... (long post sorry)
so by way of introduction: I'm 39, been on Levethyroxine (various doses) since aged 17. GP didn't refer me to Endo at diagnosis even though TFT's were really messed up.
Finally go referred in my 20's and due to moving currently on 3rd Endo.
Working diagnosis: Isolated TSH deficiency / secondary hypothyroidism.
Have had antibodies checked a few time: always negative.
TSH always below reference range even when T3/T4 below range. Endo's work with T4/T3 levels.
However new consultant apparently doesn't monitor or treat from T3
So after many years of T4/T3 in upper quarter of range and feeling well with no symptoms, my FT4 shoots up to 31.
Have reduced dose of Levo from 250mcg to 225mcg with minimal reduction to FT4. Reduced now to 200mcg - from 15/1/18. However my FT3 is also dropping from 4.6 to 4.
GP/Endo have reluctantly run some bloods at my request:
I understand that this significant increase in FT4 is a biological sign of being over medicated and a FT4 so elevated can inhibit conversion. I understand my conversion ratio is too high (currently sitting > 7). I am more than happy to reduce my dose down until my FT4 is within an acceptable range and hopefully this will improve my FT3 and conversion ratio. Only then will I be able to isolate if conversion is the issue.
looking back holistically my ratio's have been between 3.2 and 4.5.
My Endo has stated I am "thyrotoxic" and I have symptom of hypothyroidism which he has described as being exhausted because of being toxic. Pulse/BP normal.
Regarding vitamins: B12 is only 198 but Active B12 better. Vitamin D is 47 (30-50) insufficient. GP not happy to prescribe any supplement and has messaged to say "take some multivitamins during the winter months"
So the question is....... where do I begin....
Ideally once FT4 is back in range (and if FT3 is still at the bottom) then I would like to trial T3. This is absolutely not supported by my local NHS trust.
I also want to have more control and to supplement my vitamins. Any advice would be welcomed.
Thank you for reading
Written by
Bexg
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The Vit D Council recommends a level of 100-150nmol/L. Your level is too high for your GP to prescribe anything. Forget multivitamins, they're a waste of time, supplement individually where necessary.
For your level of Vit D I would suggest taking 5000iu D3 daily for 3 months then retest. If all you want to test is Vit D then use City Assays vitamindtest.org.uk/
Best D3 supplements are those that contain olive oil to aid absorption, check out Doctors Best bodykind.com/product/2463-b...
Once you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range.
There are important cofactors needed when taking D3
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.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and 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
Vitamins ACTIVE B12 68.600 pmol/L [25.10 - 165.00]
Serum vitamin B12 level 198 ng/L [180 - 866]
Your Active B12 isn't that high in range, and your Serum B12 is very low in range. Check for signs of B12 deficiency here b12deficiency.info/signs-an... and if you have any pop over to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
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Serum folate level 9.8 ng/ml [3.9 - 26.8]
Folate is recommended to be at least half way through it's range (15ish with that range). A good B Complex will help raise it, and if taking B12 a B Complex is needed to balance all the B Vitamins. One decent brand is Thorne Basic B.
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Serum ferritin level 57.9 ng/ml [13 - 150]
For thyroid hormone to work (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, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
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Do you know what your thyroid test results were upon diagnosis?
Have you had Thyroglobulin (TG) antibodies tested as well as TPO?
From your most recent results I would say you need T3 adding.
Such a high FT4 result means that you very likely are making rT3 rather than FT3.
Have reduced dose of Levo from 250mcg to 225mcg with minimal reduction to FT4. Reduced now to 200mcg - from 15/1/18. However my FT3 is also dropping from 4.6 to 4.
Probably because you have reduced your Levo with the effect of reducing your FT4 and because you're not converting very well your FT3 has also dropped.
I've had my FT4 as high as yours with FT3 similar to yours, testing showed very high in range rT3 and poor conversion. I did a urine test to confirm this following the blood test.
I'm not medically trained but my opinion is that you need T3 added to an appropriately lower dose of Levo.
You also need to optimise your vitamins and minerals as suggested above and test TG antibodies.
Thank you so much for such an informative reply!!! I have read so many of your responses in ore.
To be honest I don't know if I'm on arse or elbow! I didn't want to harp on about symptoms but have symptoms of both B12 def and Vit D def. I have felt so compromised and used to be fit and active. Now I just couldn't face anything remotely strenuous, even walking up a hill causes my legs and back to ache, I feel like I'm dragging my self about. I have been getting some numbness and pins/needles in feet and hands. Also a strange headache that wraps around my skull with pressure in my ears. Balance is completely off, I feel like I'm on a boat and often seem to lose balance whilst standing still. Such a horrible feeling! I wake from a decent nights sleep feeling so tired and drained but make myself get on, then feel frazzled again mid afternoon.
My thoughts on Vit D was the recommendations on the NICE website. 30-50 is considered insufficient and treatment recommended if symptomatic. My son (14, also TSH def) has been started on Adcal D3 for a level of 45. But I'm not pursuing my GP just another battle I don't need!! Hence the the post!
Your recommendations are fabulous and perfectly sensible..... would you start 1 at a time?
Did you ever get to the bottom of your spike in FT4? Mine has come out of the blue and with no apparent cause.
I've not had TG antibodies only TPO. My consultant wouldn't do TG. To be honest I felt that my new consultant just didn't want to listen to anything.... and said that all my symptoms were due to toxicity (even weight gain!)
My results at aged 17 FT4 38 and FT3 1.6.... I have no ranges but I was started on Thyroxine 50 mcg.
My son has followed the same pathway as me and we were able to test before Thyroxine was started (he was only 6) he dropped his FT3/FT4, no TSH response. TRH tested. MRI Brain - ? pituitary tumour. The saving grace is that his new Endo is fantastic, he is wondering if to genetic test at Cambridge... although we didnt have time to discuss this but he was happy to work with my Consultant.
I wondered if requesting to see the lead Endo; a specialist in Endocrine not just diabetes, and who also runs clinic at the local Bupa may be a better option?
I am just so grateful of this group and avidly read so many of the posts. Just so hard to think that so many suffer and have navigate their way through!
My son (14, also TSH def) has been started on Adcal D3 for a level of 45.
That contains calcium doesn't it? Has he had calcium tested? That always worries me when I see that, because taking D3 will increase the uptake of calcium from food then supplementing with calcium also might mean the level gets too high. Worth thinking about and asking for calcium to be tested if not already. And this makes taking K2-MK7 even more important.
would you start 1 at a time?
Do you mean starting one supplement at at time? Yes indeed (I used to remember to put that in my replies, keep forgetting now). Start with one, give it 2 weeks and if no reactions add the second one, give it another 2 weeks and if no reaction add the next one, and so on.
Did you ever get to the bottom of your spike in FT4? Mine has come out of the blue and with no apparent cause.
Oh yes, I know exactly what mine was. I was long term treated hypo with, as usual, GP who didn't know much about it. She was actually very good and when I complained of continuing symptoms she was happy to increase dose of Levo to try and help. She obviously didn't know, nor did I at that time, that increasing Levo was just going to make my FT4 rise and rise. I didn't know at the time that my conversion was poor and my vitamins and minerals low (I found out eventually by private testing that I had severe Vit D deficiency and very low ferritin and folate). So I ended up with FT4 of 34 (top of range 24.6) on 200mcg Levo which she then reduced to 175mcg. Sorting out my nutrient deficiencies and the poor conversion addressed with adding T3 to less Levo has brought thyroid results into range, apart from TSH which is always suppressed.
I've not had TG antibodies only TPO. My consultant wouldn't do TG
I actually think it's important that you have TG antibodies tested. The reason being that you can be negative for TPO but positive for TG and that would then confirm autoimmune thyroid disease. Your endo really should do it, your GP wont be able to. The alternative is the Thyroid Check Plus with Medichecks (or Blue Horizon equivalent) which does 6 tests - TSH, TT4, FT4, FT3, TPO plus TG antibodies.
I wondered if requesting to see the lead Endo; a specialist in Endocrine not just diabetes, and who also runs clinic at the local Bupa may be a better option?
Google the specialist's name plus hospital. The one that I saw, plus another one at the other hospital that covers my area, both say Consultant Endocrinologist and Diabetologist. One of them also works at the private hospital, almost next door to the NHS one, in the same capacilty. Unless it says that they are thyroid specialist then treat with a healthy dose of cynicism. I think true thyroid specialists are a bit like rocking horse droppings - you wont see many!
Both Vitamin D and B12 are pro-hormones so it is very essential they are optimum. Especially B12 as deficiences could cause us to develop dementia. B12 should be towards the upper part of the range not somewhere in the range as many docroes think is o.k.. Vit D also has an important function too.
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