HELP!! Hypo and Hashi's and supplementing for over a year now - need advice on latest Medicheck results because I seem to be getting nowhere

[bristolboy]

I've been on Levo for approximately 10 years, and currently on 150mcg per day. I had my first full Thyroid UltraVit test in Feb 2018 because all my symptoms had returned with a vengeance a couple of years ago. After that test I acted on helpful advice from this forum and began supplementing my vitamins etc. I had my second full Thyroid UltraVit test in November 2018, tweaked my vitamins slightly (see below) and went gluten free (I have Hashimotos), then had my third full UltraVit test last week. Blood draw was 8.30am, fasting, last Levo at 8.30 previous day), and Thorne Basic B (biotin) stopped 2 weeks before the blood draw. I'd be grateful for comments/advice on the latest test results, because I seem to be getting nowhere.

FEBRUARY 2018 RESULTS WERE:

TSH: 0.881 (Range 0.27 - 4.20)

Free Thyroxine: 18.5 (12.00 - 22.00)

Total Thyroxine (T4): 98.3 (59.00 - 154.00)

Free T3: 4.63 (3.10 - 6.80)

Active B12: 161.00 (25.10 - 165.00)

Folate (serum): 6.25 (2.91 - 50.00)

Vitamin D: 70.4 (50.00 - 200.00)

Ferritin: 213 (30.00 - 400.00)

Thyroglobulin antibody: 31.20 (0.00 - 115.00)

Thyroid Peroxidase antibodies: 269 (0.00 - 34.00)

SINCE FEBRUARY 2018 I BEGAN SUPPLEMENTING WITH:

Vitamin D 3000iu Better You spray; Vitamin K2 MK7 200ug (I now know 200 is too much and will reduce when the current pot of pills runs out); Methylfolate 1000mcg; Magnesium Glycinate 200mg; Selenium 200mcg.

NOVEMBER 2018 BLOOD TEST RESULTS:

TSH: 1.33 (0.27 - 4.20)

Free Thyroxine: 19.20 (12.00 - 22.00)

Free T3: 5.18 (3.10 - 6.80)

Active B12: 118.00 (37.50 - 188.00)

Folate (serum): 19.58 (3.89 - 26.80)

Vitamin D: 84.8 (50.00 - 200.00)

Ferritin: 277 (30.00 - 400.00)

Thyroglobulin antibody: 32.300 (0.00 - 115.00)

Thyroid Peroxidase antibodies: 244 (0.00 - 34.00)

SINCE NOVEMBER 2018 I ADJUSTED MY VITAMINS AS FOLLOWS (acting on advice from you good people):

Vitamin D 3000iu Better You spray increased from 21,000 per week to 30,000 per week; Vitamin K2 MK7 1 x 200ug per day (I know 200 is too much and will reduce when the current pot of pills runs out); stopped Methylfolate 1000mcg and replaced with 1 x Thorne Basic B Complex per day; Magnesium Glycinate 1 x 200mg per day; Selenium 1 x 200mcg per day.

APRIL 2019 BLOOD TEST RESULTS:

TSH: 1.01 (0.27 - 4.2)

Free Thyroxine: 20.100 (12 - 22)

Free T3: 4.95 (3.1 - 6.8)

Active B12: 203.00 (37.5 - 188) (I stopped taking Thorne Basic B 2 weeks before the blood draw due to my original appointment being re-scheduled for a week later)

Folate - serum: 12.06 (>3.89)

Vitamin D: 104 (50 - 175) (recently changed to Healthspan 4000iu spray at 40,000 per week)

Ferritin: 251 (30 - 400)

Thyroglobulin antibodies: 30.000 (<115)

Thyroid Peroxidase antibodies: 276 (<34)

I'm pleased to see my TSH has dropped slightly (but I know TSH fluctuates, and is not a good measure of wellness anyway). I'm also pleased that my Vitamin D is now over 100 (I'll continue on the 40,000 per week and try to get it up a bit further). But I'm concerned to see my Free T3 has dropped slightly, and my B12 is now over-range. And my antibodies have actually increased, despite going gluten-free shortly after the previous test (so now been GF for 4 months).

HOWEVER, my symptoms have not reduced despite the small improvements and the GF diet. And should I be concerned about the B12 being over-range?

All comments and advice gratefully received (especially on T3/T4 ratio/conversion rate)

[SeasideSusie Remembering]

All comments and advice gratefully received (especially on T3/T4 ratio/conversion rate)

Your FT4 is 81% through range, your FT3 is 50% through range, so conversion isn't as good as it should be.

You certainly don't have any nutrient deficiencies and you are taking selenium which helps conversion.

Maybe time to consider adding a bit of T3 to your Levo?

[bristolboy in reply to SeasideSusie]

Many thanks - I agree, the time has finally come to enter the T3 battle with the NHS (before going private ). Do you know anything about over-range B12? Should I be concerned? Should I stop the Thorne Basic B and try to find something with less B12 in it?

[SeasideSusie Remembering in reply to bristolboy]

It's over range because you're taking it in the B Complex and it's a bit too much for you. Best to find a good B Complex with less or no methylcobalamin. There are plenty that contain no B12 and no folate, but finding one with folate (which you will still need to maintain your level) but no B12 isn't as easy.

Cytoplan do one without B12 but includes 500mcg folate here

cytoplan.co.uk/organic-vita...

Garden of Life do one with just 133mcg B12 here

dolphinfitness.co.uk/en/gar...

and this one says it has 1mcg B12 (which I find a bit strange!) but I have no knowledge of this brand at all

wiseowlhealth.com/product/v...

Good luck with trying to get T3 on the NHS, let us know how it goes.

[bristolboy in reply to SeasideSusie]

Ha Ha!! At least I'm going into battle well-armed with info from this site - I'll report back on progress Thanks for the B Complex info.

[shaws Administrator in reply to bristolboy]

well armed or not, it will be pleasant to know that your GP/Endocrinologist will listen and know how to return you to good health.

[bristolboy in reply to SeasideSusie]

I'm just pondering on what my GP is likely to say. They may suggest increasing my dose of T4. I'm currently on 150. I've been on as much as 175/200 (alternate days) before, and it seemed to make me feel worse (certainly my wife said I was even more unbearable to live with than ever!). If an increase is suggested, what are the counter-arguments? My T4 is close to the top of the range anyway - are there risks associated with going over-range?

[bristolboy in reply to bristolboy]

PS: needless to say, my T4 wasn't tested by the GP when I was on 175/200 so have no idea what effect my "feeling worse" was having!

[SeasideSusie Remembering in reply to bristolboy]

my T4 wasn't tested by the GP when I was on 175/200

That's a shame. Do you have any Medichecks results when on that amount of Levo? Ideally you would need an over range FT4 with an unbalanced FT3 like it is now.

I'm just pondering on what my GP is likely to say. They may suggest increasing my dose of T4. I'm currently on 150. I've been on as much as 175/200 (alternate days) before, and it seemed to make me feel worse (certainly my wife said I was even more unbearable to live with than ever!).

It depends what your GP is like. I had a GP who was happy to keep on increasing my Levo, even though my FT4 reached 34 (11.8-24.6). Obviously TSH was suppressed but still the lab didn't test FT3 and my GP didn't question that. That GP was as helpful as she could be, she's retired now.

My current GP is totally TSH obsessed, nothing else matters. This is why I had to take things into my own hands and, of course, I then found out how important nutrient levels are (found a couple of shockers!). She tries to bring my thyroid up whatever I go to see her for, and we have the same old discussion every time about TSH not being a thyroid hormone and FT4/FT3 are the important results, but it makes no difference, she has a closed mind. She gives me a slip to book a thyroid test, I conveniently forget to book it on my way out, and so it goes on. But of course, I do use private tests and keep an eye on everything myself.

If you can detail how you felt on a higher dose, how it didn't help and how it/why it was reduced, that may help you to reject the suggestion of raising your dose. If you can take some evidence that converson of T4 to T3, and FT4/FT3 results are more important than TSH, and you doctor is willing to listen, then you just might get a referral to an endo, and then your battle starts all over again.

It may help to mention that Dr Toft, leading endocrinologist and past president of the British Thyroid Association, has recently written a new article which says that T3 may be helpful for many patients

rcpe.ac.uk/sites/default/fi...

In particular:

….It is instructive to consider the history of thyroid hormone replacement in order to appreciate that many of our policies have, to some extent, been accidental rather than planned. Thyroid extract was first used some 125 years ago with good effect and remained in widespread use until the 1950s when a suitable synthetic LT4 preparation gradually supplanted it. The doses employed were 200–400 μg daily. Although T3 was discovered as the second thyroid hormone in 1952 it was not used to any extent therapeutically as patients seemed content with LT4 alone, long before the demonstration that circulating T3 was largely derived from deiodination of extrathyroidal T4. The seismic shift in the treatment of hypothyroidism, however, was the result of the development of sensitive assays for TSH which showed that, in order to restore serum TSH to normal, the dose of LT4 required was of the order of 75–150 μg daily. Higher doses caused suppression of TSH consistent with hyperthyroidism. The resultant dose reductions were tolerated by the majority of patients but this was the beginning of significant dissatisfaction with adequacy of the recommended treatment of primary hypothyroidism which remains problematic today. The previously high doses of LT4 would, by the law of mass action, have overcome any impaired D2 activity in affected patients. Little attention has been given to a study, important in retrospect, which showed that it was difficult to increase serum T3 into the hyperthyroid range with LT4 unless serum free T4 concentrations were markedly elevated at around 35–40 pmol/l. This was an elegant demonstration that exogenous subclinical hyperthyroidism was a different entity from endogenous subclinical hyperthyroidism, even although serum TSH was suppressed in both conditions. In other words, a low serum TSH concentration in patients taking LT4 did not necessarily indicate overtreatment.

In short, what he is saying is that for Levothyroxine to be effective, the patient needs a dosage between 200 and 400 mcg daily. But since the focus of the medical profession had shifted to the TSH, the medical profession has erroneously decided that the TSH has priority over the wellbeing of the patient.....

But be prepared for your GP to dismiss this because they've not heard of Dr Toft.

[DogLover518 in reply to SeasideSusie]

Thank you for this article. Many GPs are TSH obsessed so I see an Endo in Baltimore through John’s Hopkins. I have Hashimoto’s and many endos in the US have more expertise with diabetes, not thyroid disease.

[SeasideSusie Remembering in reply to DogLover518]

Endos in the UK are mainly diabetes specialists too, which is why it's so difficult to get appropriate treatment here and almost impossible to find one experienced in thyroid disease.

I hope the article is useful and acceptable to your doctors.

[bristolboy in reply to SeasideSusie]

Sadly no Medichecks when I was on 175/200 Levo - only NHS TSH tests. I did my first Medichecks in February 2018, by which time my Levo had been reduced to 150 due to my TSH being 0.16. If only I'd known then that such a low TSH wasn't anything to worry about. However, I may use GPs' fears of over-suppression as a reason for them not to increase my Levo this time - leaving me to suggest the next logical move, which is a referral to an Endo (hopefully for T3). A T3-friendly Endo operating just outside of my CCG area has been recommended to me - so that's what I'll be suggesting to the GP. This time I'm definitely NOT going to be fobbed-off again with offers of anti-depressants or CBT - I'm determined that my 15 months learning on this forum isn't going to be wasted!! Wish me luck - I think I'm going to need it.

And thanks for the Dr Toft link - I had saved it safely some time ago - so safely that I can't find it now!

[SeasideSusie Remembering in reply to bristolboy]

Very best of luck with your appointment.

If you do get referred to an endo and manage to get T3 prescribed, when testing in future remember than T3 often suppresses TSH so be prepared for the endo not to know that and bleat on about it.

Let us know how it goes

[bristolboy in reply to SeasideSusie]

I certainly will

[Karenk13 in reply to bristolboy]

bristolboy In terms of what your GP says I honestly don't think that they will increase your dose because according to your bloods everything is in a good range tsh is under 2 and T4 is in the upper range even with the T3 being half way through range that will be good enough for them. Now before anyone jumps on me I know that some people feel better with a tsh under 1 and a higher T3 but in clinical terms all your bloods will be interpeted as good and within range.

[bristolboy in reply to Karenk13]

Thanks Karenk13 , you're probably right about what the GP will think of my levels - I just wanted to cover all the angles, and don't want a possible discussion about an increase in T4 to get in the way of my real reason for seeing the GP, which is getting a referral to an Endo who I've been told may be sympathetic to T3. In the unlikely event the GP suggests an increase in T4 I think I shall probably feign fear about my TSH becoming over-suppressed!!

[Karenk13 in reply to bristolboy]

bristolboy hopefully you can get a refferal but it may be difficult with those results as it will seem that your Thyroid is being perfectly managed by the GP at the moment even though you still do not feel well. Fingers crossed you feel better soon.

[bristolboy in reply to SeasideSusie]

Hi SeasideSusie , I've just been looking at the alternative B Complexes that you found. I liked the look of the Cytoplan because it has no B12 in it, but the Cytoplan (and the others you found) appears to have significantly less "daily equivalent" of all the other ingredients than the Thorne ( thorne.com/products/dp/basi... ). Given that the Thorne appears to contain many, many more times than we allegedly need of all ingredients, do you think I would be ok "downgrading" from my Thorne to, say, the Cytoplan?

[SeasideSusie Remembering in reply to bristolboy]

You can only try and see how you go. It's always a case of trial and error, see what's right for you, with supplements.

Our B12 store is supposed to be good for a couple of years, you could retest at some point (I do full vitamin testing once a year) and if necessary change back to one which has B12 in it if your level drops too much.

[bristolboy in reply to SeasideSusie]

Thanks again. You're right - I'll probably go for Cytoplan and get levels checked in 6 months

[Gingersnap202]

You may have simply stopped converting the T4 (Levo) into the usable T3. ... I never could take Levo, as for me, it was like taking nothing. The only thing that works for me is Cytomel. T3. (Liothyronine.)

[Roadrunnergreg]

You say you have Hashimotos ie autoimmune, were consistently finding that there's a critter in there wether it be Candida EBV H Pylori etc, plus you need both zinc and copper testing too. Read on is if I'm right your copper will be high and zinc low, the critter feeds on copper and suppressing the Zinc which is causing the low thyroid levels.

Bottom line sort out/get rid of the critter and the thyroid should function normally again... supporting nutrients are Vitamin C @1000mg a plus a B Complex,

The nutrients your over the range you may want to cut back on like vitamin D 100 in my opinion is high enough, B 12 at the top of the range. Etc. Hope that helps