first time post (test results): I signed up... - Thyroid UK

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first time post (test results)

roxanaleah profile image
15 Replies

I signed up months ago, when I was first diagnosed with Hashimoto's.

I've read extensively and derived a great deal of relief from the offerings of the women (and few men) on this site.

I've struggled for seven months to achieve that 'perfect' dose and, sadly, I have failed. Blessedly, because I'm in the United States and because I have a wonderful naturopath doctor, I have access to any/all forms of thyroid replacement therapy. And, what's more is my doctor's philosophy is that I'm the 'captain' of my own health ship; she's merely the guide.

So, you'd expect me to report excellent outcomes. But I cannot. I've made too many changes, too fast. I've tinkered with t4 and t3, all in a semi-desperate, chaotic way.

Here's what I've read/learned and implemented as a result, followed by my latest test results:

I read Dr. Alexander Haskell who suggests that NDT is not a good match for Hashimoto's as the porcine thyroid can trigger auto immune response. He recommended a t4/t3 combo. He further advises to adjust the t3, by small increments, every ten days until a feeling of 'well-being' is achieved.

I've read that the t4/t3 ratio must be 4/1 and I've read that it must be 10/1.

I've read that t3 intake should not exceed 10mcgs.

Despite having attempted to incorporate variations on all of this information, since the 1st of July, I've taken only 50mcg of t4 and 12.5-15mcg of t3.

My results as of yesterday are:

TSH 0.02 [0.45-5.10]

Free T3 3.4 [2.18-3.98]

Free T4 0.8 [0.7-1.5]

I had taken 7.5 mcg of t3, six hours prior and 50mcg of t4 12 hours prior. (If that's relevant.)

My symptoms are: a general feeling of uneasiness, inability to concentrate, low body temperature, waking every 1.5-2 hours, weakness, itchy scalp and skin, sighing, etc.

My concern has been the ambiguity of symptoms in terms of hypo/hyper.

My apologies for making such a long, opening post. I appreciate the wisdom of the women who post here and I look forward to that wisdom being shared with me.

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roxanaleah profile image
roxanaleah
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15 Replies

It sounds like you've been very thorough with regard to dosing, thyroid levels and monitoring your health, but I've seen no evidence from your post that you have paid attention to your nutrient levels. Have you have them tested? If so, please post them with ranges for input.

roxanaleah profile image
roxanaleah in reply to

Thank you for your response.

It's been more than six months since I've had those values tested. At that time, my vitamin D was deficient, as was my iron. I've subsequently been supplementing but I have no idea how successful that has been.

I will request new tests and return with those results!

Much thanks...

Marz profile image
Marz

B12 - Folate - Ferritin - VitD need to be tested and optimal for thyroid hormones to work well in the body. Do post your results with ranges ....

roxanaleah profile image
roxanaleah in reply to Marz

Thank you fur your reply.

As I mentioned, above, I will pursue further testing.

I don't think I fully understand the relevance of vitamin and mineral levels in terms of thyroid hormone replacement. But I will request those tests and relay the results, here, in search of advice going forward.

Again, thank you for taking the time to respond.

Marz profile image
Marz in reply to roxanaleah

Possibly due to low thyroid affecting absorption of vitals due to low stomach acid - which also accompanies low thyroid. Also gut issues are very common.

Having been on this forum for six years I have learnt so much from others who know far more than me 😊 You can click onto my name above and read about my journey in about two minutes - as you can other members !

thyroiduk.org

The above link takes you to the main website of this forum where everything is explained - including vitamin and mineral testing 😊

SlowDragon profile image
SlowDragonAdministrator

So if you have Hashimoto's are you on strictly gluten free diet. If you have been reading here a while you will know many (most?) of us find it essential. Some also need to look at cutting out dairy and or nightshades

As Marz says, good levels of vitamin D, folate, ferritin and B12 essential

Great film about thyroid

drbradshook.com/understandi...

Other supplements to consider - vitamin C for adrenals

Zinc, magnesium, selenium, vitamin A

Good probiotic to help heal gut

roxanaleah profile image
roxanaleah in reply to SlowDragon

Thank you for responding and thank you for the link. I'm a sponge for information about thyroid health and treatment. As I mentioned in my OP, I might be full of too much information; specifically conflicting information! Yet, in all that I've read, I've never heard about the relationship between vitamin C and adrenal function.

I take a food-based multi-vitamin, in four capsules per day and nothing else.

I will request testing for the nutrient levels.

Finally, yes, I began a gluten free lifestyle shortly after diagnosis.

Much thanks for the help!

Marz profile image
Marz in reply to roxanaleah

Oooh yes adrenals love VitC. It is often mentioned on this forum that taking a multi -vit is not the best way as you rarely have enough of what you need and on increasing may have too much of something .... Testing of the main culprits is a good place to start 😊

I agree with your replies that vitamins play a big part in how well you feel. For example I take vitc with my thyroxine to help it absorb then later in the day sublingual b12 and a vit d and folic acid. I've researched these for ages and had blood tests to confirm all these vitamins are low. The thyroid does this so we have to supplement. I cannot tell you how great I feel. I'm back to work and my head is clear. I have much more energy and I'm loosing a little bit of weight I'd put on. This site has helped me tremendously with hashimotos.

Good luck with everything.

SlowDragon profile image
SlowDragonAdministrator

Never take a multivitamin with iodine in if you have Hashimotos. Iodine fuels the inflammation

Generally multivitamins are waste of time & money with thyroid disease

We need specific vitamins in quite large amounts

Eg vitamin D is often very low and a "normal" maintenance dose of 800 or 1000iu daily is not any where near enough.

More likely need 5000iu for several months, retest and then possibly 1000iu or 2000iu daily as maintenance dose. Depending on how poor gut function is.

As gut heals then may be able to reduce levels of supplements

hypothyroidmom.com/92-of-ha...

greygoose profile image
greygoose

"I read Dr. Alexander Haskell who suggests that NDT is not a good match for Hashimoto's as the porcine thyroid can trigger auto immune response."

CAN is the important word, here. I doesn't for everybody - especially if the thyroid has already been killed off. You have to try it for yourself, and see how it works for you personally. Some Hashi's people do very well on it.

"I've read that the t4/t3 ratio must be 4/1 and I've read that it must be 10/1."

Ratios are for healthy people. Hypos are not healthy. Some people do very well on T4 only, and others on T3 only. The rest have to find the combination that suits them personally. We're all different.

"I've read that t3 intake should not exceed 10mcgs."

That's just silly. You need what you need. I take 75 mcg T3 only. If I just took 10 mcg, I'd soon end up a vegetable.

"I had taken 7.5 mcg of t3, six hours prior and 50mcg of t4 12 hours prior. (If that's relevant.)"

That is very relevant. So, your results are not as impressive as they look. You should leave between 8 to 12 hours between your last dose of T3 and the blood draw. And 24 hours for T4. What time of day was this test done? TSH is highest early in the morning, and drops throughout the day. It also drops after eating. So, on here, it is always recommended to have an early morning, fasting test.

But, whatever your level of T3, it is obviously too low for you. Many symptoms cross over from hypo to hyper, but you are not hyper, so your symptoms are either due to low T3 or nutritional deficiencies. The air hunger, for example could be hypo, but could also be due to low B12. :)

roxanaleah profile image
roxanaleah in reply to greygoose

Thank you, greygoose (super cute avatar).

The conflicting information from the so-called 'experts' is enough to drive a sane person mad (and I never said I was sane!)

So consumed have I become with discovering the 'magic' formula, that I find myself calculating possible t3/t4 combos, subconsciously, a I go through my day.

The other day I stumbled upon a journal article that suggested that BMI plays a role in dosing which is quite counter-intuitive!

Based on the study, it was found that the higher one's BMI, the lower the hormone replacement necessary to achieve euthyroid.

The calculation derived from this goes: -.018 x BMI + 2.13 is multiplied by one's kgs to derive how many micrograms of t4 are needed.

My data results in 102 mcgs. This might or might not be accurate, but since no one can agree on the relative equivalency of t4/t3, it makes it hard to figure out.

It seems that the standard idea is a 4 to 1 potency ratio between t3 and t4. Some doctors say 5x. But I read a study which found t3 to be 3.3x the potency of t4. This ambiguity makes estimating a good dose challenging to say the least.

What is your experience of the relative potency of t3 to t4?

greygoose profile image
greygoose in reply to roxanaleah

If you can't convert T4 to T3, T4 has no potency, so all estimations are nul and void.

As I said, you need what you need, and to find that out, you have to try things - but, give them long enough to work. Not chop and change every few days. Hormones are not instant fixes, they all take time to work. It's not like taking an aspirin for a headache.

As for the BMI theory... There's not much point in working out how much T4 one should take in advance. And, before you even know if that person can convert T4 to T3. All this theorising is rarely of much value to the suffering patient. For her, it's all trial and error. And if the doctor won't let her try things, due to the half-baked theories of someone who has no idea what hypothyroidism is like in practice, then she's not going to get well. The main problem with these people is that they think that hypos react like healthy people. They don't. There's no comparison. And I do wish they would stop comparing us to healthy people and expecting our bodies to react in the same way.

The importance of nutrient levels: massive. They are (I know i repeat myself here 🙄 They can be the "canary-in-the-coal mine" revealing what our issues are when failing to convert our dosage efficiently. I take NDT (which supplies T3) yet still had low levels of free T3 showing in my results. The culprit? Deficient levels of nutrients! (Specifically Ferritin @ rock bottom), without having the light shone on this info we continued to up my dose. Bad idea, as I just had a massive anxiety and depression upswing. So long story... we have reduced NDT and are aggressively going after those ferritin levels. But it could be any of the key nutrients. Vit D? - very common to have deficiencies. Ditto B12. The point is we have to look at ALL levels and get them up to optimal - not "normal" folks - optimal!!. If we have thyroid disease this is key.

hypothyroidmom.com/92-of-ha...

stopthethyroidmadness.com/b12/

stopthethyroidmadness.com/f...

SlowDragon profile image
SlowDragonAdministrator in reply to

Yep, too true. Vitamins are so important

I had what appeared to be mildly low vitamin D, but sorting that out and subsequent low magnesium has been key.

Vitamin D wasn't much below 50 nmol/L so wasn't flagged up as a serious issue, but supplementing vitamin D was the key for me. It then also revealed low magnesium and that was the light bulb moment when I realised gluten could be the underlying issue. It turned out gluten definitely was my most major issue. Changing to GF then enabled gut to start healing

Like many with Hashimoto's, I seem to need vitamin D around 100nmol/L.

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