Need some help with recent results: Hi all, I’m... - Thyroid UK

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Need some help with recent results

Rosebud1955 profile image
17 Replies

Hi all, I’m at a crossroad and don’t know where to turn. Just a refresher: over 65, thyroid cancer in 2017, followed by T.T six months later. Started out on levo, poor converter, so cytomel 5mcg was added to 100 levo, taken all at once upon waking. Did not tolerate cytomel ( blood pressure shot up) so I had to stop cytomel. Endo gave me 60 mg NDT (Erfa) + 50 levo. Feeling better on the addition of NDT. Weight gain stopped and have actually lost 10 lbs in the last 6 months. Weight is now good! Energy level good but sleep has been poor, brain fog never lifted, memory not as sharp, very dry skin, nail cuticles cracking, heat intolerance, eyebrows diminished, hair thinned, no constipation. Endo thinks I might be over medicated, so he decreased levo to 37.5 plus the 60 NDT. have been on this new dose for the past eight weeks. All hell broke loose : fatigue returned, no motivation, irretrievable, sleep poorer, pins and needles in toes and fingers, rotating pains everywhere, frozen shoulder and many more! Had bloods today, here are the results: tsh : 0.01 (0.32-4.00). FT4 : 12 (9-19). Ft3: 3.9 (2.6-5,8). All vitamins are good and I supplement with Thorne B-complex, vit. D +M2k 100mcg, selenium 100, Bloods drawn at 11.30, could get early morning appointment, nothing to eat or drink before, took levo + 30 NDT 24 hours before, 30 NDT 12 hours before. Please can someone help me with deciding the next steps. Are these reasonable results? I feel like I have been run over by a truck! Will be speaking with endo tomorrow. I know he will ignore my symptoms and insist that I’m fine on the present dose. Should I be increasing the NDT, or should I increase the levo. I have enough meds on hand to do increases. I can’t remain on this dose, feeling poorly and wretched. I eventually want to be on NDT only, but he’s being too cautious, suggesting that I do need some levo on board.

Sorry for the long post, any advice would be much appreciated.

I hope everyone is coping as best as can be in these trying times!!

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Rosebud1955
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Roadrunnergreg profile image
Roadrunnergreg

Your on Levothyroxine, Levothyroxine depletes iron, I'd say either get your iron checked or try a supplement for a week to see if things improve, odds are they will... also iron is vitamin C dependent for absorption and B2 if memory serves me right...

Also what is your vitamin D level, plus might want to check iron-copper-zinc, these work together and there might be an imbalance

Hope this helps...

Symptoms of Iron Deficiency
helvella profile image
helvellaAdministratorThyroid UK in reply to Roadrunnergreg

Levothyroxine depletes iron

Do you have any references for that?

I think we are generally aware that those who are hypothyroid can also end up low in iron. But I am not aware of a specific link with levothyroxine itself.

(I am aware, though, that iron can reduce absorption of levothyroxine, very significantly, if taken too close together.)

Roadrunnergreg profile image
Roadrunnergreg in reply to helvella

just do a search for nutrienyts depleted by levothyroxine... plus it should be on the insert with the levothyroxine... or here ya go under thyroid medications...

it's my opinion in some cases it's why people feeel well for a while after starting levothyroxine, and then feel crap again and think their undermedicated

pharmacysolutionsonline.com...

helvella profile image
helvellaAdministratorThyroid UK in reply to Roadrunnergreg

Well, that site does baldly state it to be the case. But no explanation or supporting information.

UK Patient Information Leaflets do not say anything of the sort.

I had rather hoped for a reference which would explain why it is claimed and an indication of possible mechanisms.

Roadrunnergreg profile image
Roadrunnergreg in reply to helvella

Well if your waiting for a pubmed reference for every little thing, then you'll wait a long time to forever especially when it comes to pharmacologic and Nutrition and you can take that to the bank as they say

helvella profile image
helvellaAdministratorThyroid UK in reply to Roadrunnergreg

You have not explained, though, why you said:

plus it should be on the insert with the levothyroxine...

When it clearly isn't.

The paper below describes a situation which I think more likely. That iron-deficiency is associated with subclinical hypothyroidism. That levothyroxine alone will have limited impact on iron-deficiency. That iron alone will have limited impact on iron-deficiency. And levothyroxine and iron will be more effective at restoring iron repletion.

Randomized Controlled Trial

Am J Med

. 2013 May;126(5):420-4.

doi: 10.1016/j.amjmed.2012.12.009.

Treatment of iron-deficiency anemia in patients with subclinical hypothyroidism

Mohammadreza Ravanbod 1 , Kamyar Asadipooya, Mohammadreza Kalantarhormozi, Iraj Nabipour, Gholamhosein R Omrani

Affiliations

PMID: 23582934 DOI: 10.1016/j.amjmed.2012.12.009

Abstract

Objective: Subclinical hypothyroidism is a health state that is associated with hypercholesterolemia, infertility, iron-deficiency anemia, and poor obstetric outcome. This article summarizes the results of a prospective clinical investigation of whether treatment of subclinical hypothyroidism and iron-deficiency anemia with a combination of levothyroxine plus iron salt would be superior to each treatment alone.

Methods: In a randomized, double-blind, active-controlled trial, 60 patients with subclinical hypothyroidism and iron-deficiency anemia received iron salt+placebo (20 patients), levothyroxine+placebo (20 patients), or levothyroxine+iron salt (20 patients) for 3 months. Change from baseline (before) to end of study (after) in hemoglobin, ferritin, and thyroid-stimulating hormone levels were compared among groups.

Results: The increase from baseline in hemoglobin and ferritin in the levothyroxine+iron group was superior to the other groups, in which a decrease in thyroid-stimulating hormone in the 2 groups that received levothyroxine was superior to the group treated with iron salt.

Conclusion: Subclinical hypothyroidism was investigated in iron-deficient patients with no acceptable response to iron salt alone. A combination of levothyroxine and iron salt is better than each one alone.

pubmed.ncbi.nlm.nih.gov/235...

Roadrunnergreg profile image
Roadrunnergreg in reply to helvella

that says that the levothyroxinde + iron was superior to the other two groups with reduced levothyroxine, it basically makes my case for me. and as for your thoughts on the paper /linki showed, i've had some of my best informetion from these type of sources, and more reliable than drug companies and the doctors ie legalised drug dealers that know lessm aboiut their products than the average high street drug dealers in my many years of experience with so called doctors... it's why i've been able to reversed my hypothyroidism and adrenal fatigue... i do my research

tattybogle profile image
tattybogle in reply to Roadrunnergreg

we have to question that source though, since they would obviously like us to buy some.

Roadrunnergreg profile image
Roadrunnergreg in reply to tattybogle

i've gotten some of my best information from this kind of paper, oh by the way you don't have to buy their products it's the information you need to evaluate for you.... Do the symptoms match up to yours, kinda simple cross referencing

radd profile image
radd in reply to Roadrunnergreg

Roadrunnergreg - 'Levothyroxine depletes iron'

& helvella - 'But I am not aware of a specific link with levothyroxine itself.'

We know iron deficiency may both be a cause and an effect of hypothyroidism. What can happen on the introduction of Levothyroxine are iron levels reduce further as the need for iron increases due to stimulation of the whole erythropoiesis production/processes, ie RBC,s haemoglobin, etc.

Hence, we often see ferritin levels failing to raise or even reducing in spite of iron supplementation as this additional is just keeping up (or failing to) with increased metabolism. Hence labs may not evidence accomplished benefits until iron mechanisms are working inline with good amounts of RBC’s, haemoglobin, etc and the whole erythropoiesis production/process .

Also, as iron has many safety mechanisms to prevent toxicity and only a certain amount can be absorbed/utilised no matter how much is supplemented, the rapidity of Levothyroxine increments to reach optimal will often be faster than the rate of iron mechanism improvements, so the gap widens further.

Therefore, it is not Levothyroxine that risks depleting iron but an indirect consequence of introducing Levothyroxine in the presence of iron deficiency.

helvella profile image
helvellaAdministratorThyroid UK in reply to radd

I'm happy to agree that there could be, indeed are, such mechanisms.

You rightly point out it is not levothyroxine itself. Indeed, you would expect the same effect from liothyronine (or desiccated thyroid) in the same circumstance.

Rosebud1955 profile image
Rosebud1955 in reply to Roadrunnergreg

Thanks for your input. Ferritin: 187 (5-272), vit.D: 143 (75-250), I take zinc/copper combination (15 mg zinc+2mg copper). 1gram vit. C per day.

SeasideSusie profile image
SeasideSusieRemembering

Rosebud1955

I have never before heard that taking levothyroxine depletes iron.

Hypothyroidism can lead to poor iron absorption, but it can also cause all nutrients to be low so it's important to test key nutrients - Vit D, B12, Folate and Ferritin - and you say your vitamin levels are good.

Please do not supplement with iron unless you have an iron panel to check serum iron, transferrin saturation, total iron binding capacity and ferritin. If you already have a good serum iron level then taking iron will take it too high and too much iron is as bad as too little.

Did you feel optimally medicated on 60mg Erfa plus 50mcg Levo? If so what were your test results on that combination? If FT4 and FT3 were in range there is absolutely no problem with you being on this dose. Why did your endo think you were overmedicated?

Testing at 11.30am when on combination hormone replacement is not a problem, because you're taking NDT your TSH is going to be low, even suppressed, anyway, the T3 in the NDT does that, so you just look at the FT4 and, more importantly, the FT3 and it's this that tells us if we're overmedicated. As long as you have taken your thyroid meds with the suggested time gap before the blood draw then your results for FT4 and FT3 should be accurate.

SlowDragon profile image
SlowDragonAdministrator

Had bloods today, here are the results:

tsh : 0.01 (0.32-4.00).

FT4 : 12 (9-19).

Ft3: 3.9 (2.6-5,8).

All vitamins are good

and I supplement with Thorne B-complex, vit. D +M2k 100mcg, selenium 100

FT3 Looks far too low

Please add actual vitamin results and ranges

Did you stop vitamin B complex week before test

Are you on strictly gluten free diet

Rosebud1955 profile image
Rosebud1955

Thanks for replying. Yes, I stopped b vitamins for one week. Vit D: 145 (75-250) B12:1028 (138-652) was supplementing sublingual 1000mcg,but stopped. Just the small amount in b-vitamins. Ferritin:187 (5-262) folate not checked, but 400mcg in B- vitamins.

pennyannie profile image
pennyannie

Hello Rosebud :

I find it confusing reading results when both NDT and T4 are being taken and since you want to go NDT only suggest you think to drop the T4 and slowly increase your NDT by 1/4 grain increments every week /10 days.

I stopped 125 mcg T4 one day and started NDT the following day on 1/2 grain -

I had bench mark numbers of my T3 and T4 from when on T4 and I monitored my blood pressure, pulse and temperature throughout my switch and in the 6 -8 weeks it took for the T4 to leave my body I had built up my NDT to 1 + 1/2 grains - my pulse and blood pressure remained constant and my temperature had risen from 35.4 to 36.6 :

I stayed on 1 + 1/2 grains for 6-8 weeks letting the NDT bed in and then took a blood test and my T3 and T4 had literally swopped positions from when on monotherapy with T4 only.

My TSH was still at 0.01 where it lives if I'm to be well and my T3 was 110% and my T4 25% through the ranges but I was well and in no way hyperthyroid, and still with minor hypo symptoms.

With NDT you dose to the relief of symptoms and not a blood test :

The blood tests, ranges and guidelines were all introduced to be used alongside Big Pharmas introduction of synthetic T3 and T4 to compete against Natural Desiccated Thyroid hormone medication for market share, ( or unshare if I want to be cynical ) :

Rosebud1955 profile image
Rosebud1955 in reply to pennyannie

Hi Penn: Thanks for your input, and for the helpful explanations. Also thanks for sharing your personal story, it surely will help me with my transition from Levo to NDT. Very helpful!

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