Please help with my results and correct dosing ... - Thyroid UK

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Please help with my results and correct dosing of WP thyroid... depression and hairloss!!

Abzieg profile image
28 Replies

I have my thyroid results and my doctor said they are normal, however on all forums are I am told I am hypo. I am suffering with terrible fatigue and hairloss, and literally feeling like giving up everything. I am going to order WP thyroid off my own back and really need some help with what dose to buy and what to start off with. I know its not ideal to not have a doctor however I have no money to pay for a functional doctor. My results are below please help :(

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Abzieg
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28 Replies

I was told, years ago when first diagnosed with hypothyroidism, that an optimal TSH is around 1. Yours seems a little high, and your free T4 and T3 are lowish. In my own experience, in order to keep your TSH within laboratory range on drugs containing T3, you need to take a suboptimal dose, which basically leaves you hypothyroid.

On NDT or other drugs containing T3, you cannot dose by the TSH readings, or you will never get your FT levels up where they need to be. Unfortunately, most doctors seem unaware of that, and continue to focus on the TSH.

My TSH has been completely suppressed for several years (<0.001), and I 'm still very much alive...my GP is freaking out about it, but my doctor (a Hertoghe doctor) says you cannot go by the TSH when on NDT, but need to look at your free Ts, especially the free T3.

Abzieg profile image
Abzieg in reply to

Thankyou - what kind of dose would you suggest? How many grains, i dont really understand it i'm so new to all of it and dont know where to turn

in reply to Abzieg

It's really impossible to say, as that will depend on symptom relief. Raise it by a quarter-to half a grain at a time, and see how you feel. Raise it every other week or so until complete symptom relief is achieved. In order to get there, you cannot focus on the TSH, as it is likely to get lower and lower as your FT 3 and FT4 levels raise.

sweetsusie profile image
sweetsusie in reply to

My doctor refuses to do any testing except for TSH. She believe that if this is "normal" then everything else is "normal," too.

Clutter profile image
Clutter

Abzieg,

Your thyroid results are euthyroid although FT4 is low. I would be inclined to check ferritin, vitamin D, B12 and folate before taking NDT. Low ferritin often causes hair loss and low levels of all of them will cause fatigue.

If you are determined to trial NDT buy 1 grain tablets and buy a pillcutter to halve the tablets so you can start on 1/2 tablet.

_________________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Abzieg profile image
Abzieg in reply to Clutter

Thanks Clutter, what does euthyroid mean? I have checked them all - my ferritin is 47, Serum vit d 65NMOL, B12 411 reference 187-883, and folate 9.2ug reference 3-20.

Is that 1 grain at 65mg? so half of that, and just once a day?

Clutter profile image
Clutter in reply to Abzieg

Abzieg,

Euthyroid means normal.

Ferritin is optimal >100 through to halfway in range. Hairloss is common when ferritin is <70. Supplement iron and take each tablet with 500mg-1,000mg vitamin C to aid absorption and minimise constipation.

PA society say B12 is optimal around 1,000. Supplement 1,000mcg methylcobalamin and take a B Complex vitamin to boost folate.

VitD is optimal 75-100. Supplement 2,500iu D3 daily.

If you self-medicate NDT 1/2 grain (32.5mg) daily is the starting dose. Dose can be increased in 1/2 grain increments every 2 weeks but you would be better holding at 1 grain for 6 weeks and retesting as you are likely to be overmedicated on more than 1 grain.

Make sure iron and vitamin D are taken 4 hours away from NDT.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Abzieg profile image
Abzieg in reply to Clutter

The thing is i keep getting mixed reviews on my results especially on the thyroid facebook groups who all say I am hypo. I have tried supplementing with Iron and it caused more hairloss.

This is my last resort now - So just to clarify - start on 32.5MG once a day, when i wake? If i feel good on this and my hairloss stops can i just stay on this much? or do we have to increase?

in reply to Abzieg

I can only tell you my personal opinion, but to me, your thyroid labs do not look optimal, and I think your TSH is borderline high. I am sorry if you've already mentioned this, but how much WP Thyroid are you currently taking?

Abzieg profile image
Abzieg in reply to

Thankyou Anna! I am not taking any meds these are my results from not taking anything. This is literally my last resort before I tip over!

in reply to Abzieg

Oh, in that case I'm sorry, I thought you were already on WP Thyroid...! Then, I'd have to agree with Clutter's previous post; your T4 is low and, although still in range, your TSH could be considered a little highish...if nothing else, you should make sure to have it monitored. When I was put on T4 drugs 15 years ago, I was told by an endocrinologist at the time that most people without thyroid disease have a TSH around 1...although most labs use 4.5 or even 5.5 as the upper normal range for TSH readings.

Clutter profile image
Clutter in reply to Abzieg

Abzieg,

There are other causes of hairloss and, if that's the case, taking NDT won't help. If you feel well on 1/2 grain there is no need to increase dose.

Abzieg profile image
Abzieg in reply to Clutter

Thankyou, hairloss is not my only symptom i am absolutley exhausted all of the time - have to nap in the afternoon, feel very low, have raynauds syndrome. Hairloss is the cherry on the cake

Abzieg profile image
Abzieg in reply to Abzieg

both my grandparents were hypo also so not sure if it runs

phoenix23002 profile image
phoenix23002 in reply to Abzieg

Abzieg... It is suggested that you start at 1/2 (30 - 32.5 mgs) grain of NDT per day. Some sites suggest starting at 1 grain per day. You need to study and do your research but 1/2 grain shouldn't be a problem. Hold that dose for 10 days/2 wks, then increase by 1/4 or 1/2 grain for another 10 days/2 weeks. At the 6 - 8 week mark you should have blood labs done again to see where you are and how you are responding to NDT.

You also need to keep a daily log of your body temp and heart rate, dosage and how you are feeling that day.... nothing fancy. This record can help you to know when to increase your dosage but not sooner than every 10 days. It can take a while for our bodies to get used to NDT and to settle down, so to speak.

Often temps will rise for a bit then drop back indicating a need to increase dosage. Remember.... years ago, before the invention of the cursed TSH test, doctors dosed NDT by body temp/heart rate/blood pressure and the alleviation of symptoms.

Low iron, low D3, B12 and struggling adrenals can make stabilizing NDT dosages problematic and difficult to do for some of us. It is not the fault of the NDT. Often when adrenals are struggling already and then we take NDT and the NDT starts to optimize digestion, body temp, blood pressure, etc.... the adrenals just can't keep up and will crash. Not telling you that to scare you but just to give you a head's up so you aren't blind-sided it if happens.

It never happened to me or anyone I know who takes NDT and it is very likely not to happen to you either but forewarned is forearmed. Again, do your own research/homework.

stopthethyroidmadness.com/n...

Abzieg profile image
Abzieg in reply to phoenix23002

Thankyou very much Phoenix this is very helpful. I know some tell me to not self medicate but I am going to try as my life is so crappy right now I've nothing to lose! Appreciate it x

in reply to Clutter

Clutter, I have often heard and read that a TSH >2 is indicative of a failing thyroid, even though within laboratory range. Some even suggest a normal TSH should be revised to 0.2-2.0, not 0.2-4.5 or even 5.5. Therefore, I am not sure a TSH of 1.75 should be considered good, especially not if FTs are low, along with hypothyroid symptoms.

Clutter profile image
Clutter in reply to

Anna69,

TSH 0.5-1.75 is euthyroid. TSH >2 may be an indication thyroid is beginning to struggle.

Ansteynomad profile image
Ansteynomad in reply to Clutter

Doesn't one have to look at the whole picture? Isn't that what we are always complaining doctors won't do?

I was in exactly the same position as OP, TSH looking good, but FT4 and FT3 resolutely in the bottom half, and sometimes in the bottom third, of the range. As far as the NHs was concerned, I had CFS, but Levoyroxine and then NDT has changed my life.

From 2013 I have been free of symptoms that started in 1973!

Abzieg profile image
Abzieg in reply to Ansteynomad

Thankyou! So your results were similar to mine? were you experiencing hairloss? Also what dose did you find to be the best on NDT?

Ansteynomad profile image
Ansteynomad in reply to Abzieg

It took seven years for my TSH to rise from 1.6 to 4.2, so still within range, but throughout that period my FT4 and FT3 were around 13 and 4 respectively. I had pretty much every sign and symptom of hypothyroidism going, but the NHS have never acknowledged it. Yes, I had hairloss, up to about 50% at one point. After a year on NDT and six months on a hefty Biotin supplement it's starting to come back. I now take 2.5 grains of Thyroid S and am pretty much symptom free, although the damage to my cognitive function appears to be permanent.

Abzieg profile image
Abzieg in reply to Ansteynomad

It took a year on meds before it stopped falling out? wow thats a long time! You hear so many stories of people suffering and the nhs wont do anything.. itsvery sad

in reply to Ansteynomad

Can I ask which brand of NDT you are taking?

Abzieg profile image
Abzieg in reply to

My TSH half a year before hand was 2.5 so it has decreased slightly

in reply to Abzieg

OK, then it's actually going in the "wrong" direction if we are talking about hypothyroidism...your TSH has actually gone down, which is good.

I don't know very much about the health care system in the UK, but I imagine it's the same everywhere, and that most conventional doctors would refuse to consider you hypothyroid, let alone treat you, as long as your TSH and FTs remain in range. Some alternative doctors (like the Hertoghe doctors) look at the whole picture, and test a whole range of hormones, but most conventional doctors only look at the TSH. If your TSH has decreased slightly in the past year, it would be even more difficult to claim hypothyroidism...sorry to sound so pessimistic.

Abzieg profile image
Abzieg in reply to

I have been told not to look at tsh. That my T4 Hormone is right at the bottom of the scale and my T3 Is low also. Do these 2 results not warrant me using NDT to bring them up?

in reply to Abzieg

Well, I have always assumed you should look at the TSH when DIAGNOSING thyroid disease, in which case I thought the TSH was a pretty reliable indicator, but not necessarily once you are on thyroid hormone replacement, especially when you are on drugs containing T3 (either synthetic or NDT), as that can suppress the TSH and make you look hyper even if you are not. But I don't know if any doctor would diagnose you with hypothyroidism as long as your TSH remains <2. Hopefully, others here will know more.

greygoose profile image
greygoose in reply to Abzieg

Were the tests done at the same time of day?

It's best to have your test done early in the morning - before 9 am - and fasting, just drink water.

TSH is at it's highest early in the morning, and drops throughout the day. So, you should always do your tests at the same time of day, or you cannot compare them.

Once you are on thyroid hormone replacement, be sure to leave a 24 hour gap between your last dose and the test. :)

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