Frustrated...and confused. Eltroxin?

Hi everybody,

To cut the long story short, I have had started to add a bit of levo to my NDT (at first 12.5 mcg to 2 1/4 and 1/8 (!) Nature Throid, then increasing to 25 mcg Eltroxin after 4-5 weeks).

You can see me bloods in my previous posts, that's after 12.5 mcg T4 + NDT (TSH around 0.013, FT3 above mid-range, FT4 just below mid-range. Since I started 12.5 mcg T4 improvements were: much better sleep, much better brain balance, better mood and finally stopped crying around my period (PMS decreased). HOWEVER. I started to feel that my muscles were hurting and also it felt my temps dropped a lot (I dismissed it as I also just got over the flu). Especially a couple of days after increase of T4 to 25 mcg I started to feel on the edge, sweaty, bone/muscle pain increased, headaches, wired feeling, stiff neck, swelling on the right side of my thyroid (ultrasound: increased blood flow on the right side of thyroid lobe), sore throat, got rashes all over body (like being scolded with boiling water) connected with trips to toilet and nausea/stomach pain (intolerance to something?). I got so fed up, I reduced Eltroxin last Friday to 12.5 mcg and then stopped it completely on Saturday morning. Got the last rash (hopefully) on Sat morning, bone/muscle pain has decreased, no sore throat, still some headaches and last night I couldn't sleep at all - I was very, very warm and my bones/muscles did hurt me a lot.

I am lost right now and super-fed up...I don't think I have any choice anymore.

I have tried so many things so far.

I asked my family to post me "clean" Levo without corn starch and lactose (both allergic to, however, there is lactose in Nature Throid and I didn't have any reaction to it...).

I am going back to where I was on 2 1/4 and 1/8 NDT couple of months ago and I was really tired, crying and fed up. When I increase NDT to 2.5 grain (which is only 1/8 more than I take now), it's crazy. I have more energy, but I don't sleep.

I have couple of questions:

1) Could levo give me bad side effects even though it was working fine and I felt much better?

2) Is it that I might have exceeded levo and maybe went up too far by 12.5 mcg?

3) Should I try to take NDT all at once instead of splitting? I wonder if this is why I don't sleep? Last time I tried taking it all at once, I was nervous and sweaty, but is it that I just need to get used to it?

I really need a hug today, feeling dreadful and didn't go to work again. I am at a point that I don't even want to show my face there anymore.

Thanks x

[shaws]

Usually when on NDT and symptoms reappear or new ones you can increase your dose of NDT by 1/4 grain every two weeks.

Because blood tests were introduced along with T4 only (i.e. levothyroxine) when we take NDT the emphasis should be on 'how we feel' rather than tests as NDT has more than T4 within it, i.e. levo is T4 alone and both were introduced together.

One of our Advisers would never prescribe levothyroxine only NDT or T3 for resistant patients. I shall give you some of his chapters (he has since died). His patients took one daily dose of whatever they took as it avoids food interfering with the uptake of hormones.

web.archive.org/web/2010103...

There are also other topics at the top of the page.

Copy and paste onto a new page the following tinyurls

tinyurl.com/ycxpz565

tinyurl.com/ya5blrr2

tinyurl.com/y7ejh9sh

[Hidden in reply to shaws]

Hi Shaws, thanks for the info, but I think my situation is a bit different. I cannot raise NDT without getting insomnia from where I am. Ideally I would like to add more levo and decrease as levo gives me balance, but Mercury Pharma eltroxin gave me above side effects...Another question I have is - how long to start feeling much better if it's correct dose? I don't think in my case 4-6 weeks is enough...but how do you survive and work, do business travel and live day to day feeling like this

Just read the link above re Dr Lowe, indeed very interesting - I might have to take NDT once a day, I used to do it (at 4 grains back in 2017 and earlier) and it was fine. Then I was overdosed and when doctors asked me to go back to 3 grains, they did split my dose. I have a difficult time shifting my dosage to morning as I get awful side effects, but I know they will go after a while..it's just horrible.

[shaws in reply to Hidden]

The answer to your final phrase is ' You Cannot' so you have to look at options available. Some people cannot improve on certain thyroid hormones and it could be due to fillers/binders in it which affects the person but eventually find one that suits them.

Therefore if Eltroxin or levothyroxines doesn't help, it is all trial and error. No wonder we get exhausted.

As we are dealing with hormones rather a medication it is even more difficult. I wish it was as easy as taking something for a headache and I do feel for people who are struggling.

I have had to go through the same rigmarole myself but it astonished me that doctors do not know any clinical symptoms, as we used to be diagnosed by them alone and given NDT - no blood tests and it was increased until patient recovered. Then when it is insisted that levo is all that you are going to be prescribed when the person cannot even get out of bed, never mind going to work or carrying out normal duties. The fact, too, I think the doctor get fed up with seeing us and will give us something to try to dissuade us that's it isn't down to the thyroid hormones but 'something else' like depression, family problems.

Have you tried a combination of T4/T3, researchers found that a 4:1 or 3:1 basis was best. I shall give you some links which an Adviser to TSH did before he died which might be helpful:

Copy and paste onto a new page the following tinyurls

tinyurl.com/ycxpz565

tinyurl.com/ya5blrr2

tinyurl.com/y7ejh9sh

hormonerestoration.com/

I am sure members will send you plenty of hugs as we come to a stage we cannot think any more and our symptoms are awful.

[Hidden in reply to shaws]

thank you Shaws. I have never had such a bad time in my life. It's been 18 months of this and I cannot get it right. I have done 4 grains, then 3 and below. I will try the new levo in a week, but at that point I will be without it for 10 days (I stopped on Saturday morning). I see depression creeping in again, I have gone through this so many times I am so sick of it and my doctor stopped responding to me and wants to see me every 6 months. I have no one to turn to. My family don't know what to do and I will lose my job pretty soon too. I used to feel good on Armour and Nature Throid at 1 and 2 and 3 and even 4 grains and then something happened and I just don't feel good on anything

[radd]

cupofcha,

Your previous post tells of Hashi, anxiety, meds being suddenly stopped, immune issues and insulin resistance. I think your meds are probably fine. It is the way that your body is using them that is wrong.

T3 requires balanced blood sugar levels to become active so I think much of your problems are related to insulin resistance. Have you had cortisol levels tested ? ? .. Cortisol will raise blood sugar levels when needed to encourage insulin production, which enables a supply of glucose to our cells.

When working correctly T3 will bind with thyroid hormone receptors in the cell nucleus, making gene transcription work. This is when the genes within the cell’s nucleus influence the protein production of that particular cell (ie thyroid or liver or muscle, etc … ) .

Also required for well being are Mitochondria that produce the chemical energy called ATP. Each mitochondrion requires a sufficient supply of glucose fuel, thyroid hormone and nutrients such as B vits, magnesium and Coenzyme Q-10, etc.

Even if you have sufficient thyroid hormone in your blood stream, if you don’t have sufficient glucose being able to enter your cells, T3 will not be able to work as it should.

Cortisol levels are often compromised with hypothyroidism as will compensate for insufficient thyroid hormone. I would be looking at improving adrenal gland function/cortisol levels that may encourage improved blood glucose levels.

Also, the adrenals may sequester progesterone to help make up low cortisol levels. This drop in progesterone creates a progesterone/oestrogen imbalance called “oestrogen dominance” which may elevate SHBH (transport proteins) that bind T3. Again, you could have enough T3 in the blood stream but it will be unavailable to become active.

If you wish to learn how cortisol levels influence the utilisation of thyroid hormone, it is worth investigating the Hypothalamic-Pituitary-Adrenal Axis (HPA axis), which is where signalling begins into stimulating the thyroid.

You have Hashi - are you addressing possible elevated thyroid antibodies, so discouraging inflammation ? (Inflammation can negatively influence HPT axis by suppression, decrease the amount of thyroid hormone receptors and T4 to T3 conversion.)

Do you have gut issues meaning malabsorption issues and possible deficiencies in vital nutrients ? ? ... (ferratin, folate, B12 & Vit D ,etc.. ) ..

Be careful medicating too much T4 because if your body can not utilise it, a larger than healthy amount may be converting to RT3.

Anxiety/depression are classic symptoms of low thyroid hormone & adrenal issues.

[Hidden in reply to radd]

Hey radd, cortisol is fine ( blood and saliva, it was high for many months after NDT overdose), glucose levels are optimal, they never go under or over-range. My insulin tends to be high, but I eat according to insulin resistance plan. I had no issues being on any medication before and my insulin resistance was worse back then...

My mother has Hashis, we both got it after nuclear explosion in 80s, we were given huge amounts of Lugola to protect thyroids, which has caused Hashimotos inadvertently. Most of my friends back home have it too. I don't have issues with gut, I had several tests, even went for gastroscopy and helicobacter pylori testing (tissue biopsy). B12 is over mid -range, so is Vit D, ferritin - I'm working it on it, it's low in range, but has improved/doubled since taking Galfer. Inflammation markers are negative (ANA, CRP etc), antibodies positive for Hashis around 1000 and they have remained this number for many , many years.

This is why I'm puzzled. I went through everything pretty much. But tiny dose changes throw everything up in the air...

We cannot measure the amount of t3 in cells and this is annoying. I was very overmedicated before even though Labs were mildly over, it took me months to go back to where I am now. Blood tests don't really mean much if we don't know what's going on and what's being converted as 20% of t3 is from tissue conversion ...

I would also say I have enough meds, but maybe wrong meds or wrong proportion? Eltroxin is the only thing that has changed and since taking it my temps plummeted

[radd in reply to Hidden]

cupofcha,

Low ferritin can cause negative reactions like palpitations, nervousness, and anxiety in someone medicating thyroid hormone replacement.

Post results complete with ranges (numbers in brackets) if you have had a full iron panel ?

Iron is key for conversion of T4-T3 and low levels may decrease deiodinase activity resulting in conversion to RT3 ( rather than the active hormone). This means you could be hypothyroid (with low ferritin) and yet appear to have enough thyroid hormone in your blood.

Dangers of elevated thyroid hormones and inflammation already explained above.

[Hidden in reply to radd]

HbA1c IFCC 28 mmol/mol (20-42)

Sodium 136 mmol/L (135-145)

Potassium 4.6 mmol/L (3.3-5.3)

Chloride 103 mmol/L (98-107)

Urea 5.4 mmol/L (2.5-7.7)

Creatinine 59 umol/L (40-90)

Total Protein 72 g/L (64-83)

Albumin 44 g/L (37-52)

Globulins 28 g/L (21-36)

Total Bilirubin 11.0 umol/L (3.4-21.0)

Alanine Aminotransferase 16 IU/L (<55)

Aspartate Aminotransferase 16 IU/L (5-36)

Alkaline Phosphatase 49 IU/L (40-150)

Gamma GT 16 IU/L (9-36)

Calcium 2.44 mmol/L (2.10-2.60)

Phosphate 1.23 mmol/L (0.71-1.37)

Magnesium 0.82 mmol/L (0.65-1.05)

Uric Acid 207 umol/L (155-394)

Ferritin 49 ng/mL (5-204)

Vitamin B12 466 pg/mL (187-883)

Glucose 5.0 mmol/L (3.0-6.0)

Endocrinology

TEST RESULT UNITS REF.RANGE

Thyroid Stimulating Hormone * 0.013 uIU/mL (0.350-4.940)

Free T4 13.1 pmol/L (9.0-19.0)

Free T3 <> 3.98 pmol/L (2.89-4.8)

My ferritin was 34 before and for 4 years I took NDT without complaints.

Could it be that taking NDT twice a day as opposed to once suppressed tsh even more? Since splitting dosage I stopped sleeping normally

[radd in reply to Hidden]

cupofcha,

Ferritin is still much too low.

According to PA Society, Vit B12 is optimal at 1,000 and should be at least 500. Supplementing Methylcobalamin in preference to cyanocobalamin has many advantages.

TFT’s are good, although many prefer a slightly higher FT3. Low TSH & FT4 are fine when medicating NDT.

Whether taking meds all at once or splitting the dose, the effect on TSH level will be the same. I am an advocate of multi dosing meds containing T3 to reduce the rapidity of onset and prolong the duration of T3’s action.

You haven’t had an iron panel but my interest is irrelevant now as was thinking high homocysteine which your Vit B12 probably discounts. But what about folate ? ?

[Hidden in reply to radd]

My B12 was top range before and felt the same folate - last time mid-high range, but that was in June. No difference in how I felt.

Iron for me is always higher, normally over mid-range, but ferritin low. I don't test these more than twice a year as they are very expensive private. Sorry if I'm being dismissive, I have read so many research papers, stories, learned so much and I'm still not there.

No doctor can explain that up until one day I was able to take 4 grains of NDT and my life was fabulous. One day I got palpitations, rashes and lost an awful lot of weight.

[Hidden in reply to radd]

Hey radd, me again, it's after Eltroxin I got improvement, but also low temps, sore throat, muscle pains, while after initial side effects on increasing NDT, I am tired and can't really sleep. Maybe my body can't utilise hormones anymore, maybe you're right...but everything in bloods seems so normal.

[radd in reply to Hidden]

cupofcha,

There is rarely only one thing wrong which is what you appear to be searching for.

.... [ .... started to feel on the edge, sweaty, bone/muscle pain increased, headaches, wired feeling, stiff neck, swelling on the right side of my thyroid (ultrasound: increased blood flow on the right side of thyroid lobe), sore throat, got rashes all over body .... ] .. symptoms may be pointing to a Hashi attack on top of your intolerance to meds ? ? ...

Any results from sex hormones being tested ? ?

[Hidden in reply to radd]

hey radd - maybe it was a Hashi attack? But my antibodies seem always the same and other TFTs if this was an attack? Or could I have attack without any changes in bloods do you know?

Sex hormones - last time tested a good while ago and they were fine, apart from SHBG being elevated, but that was during overdose. My periods are regular, every 27-28 days, but after increasing additional T4 to 25 mcg, it came earlier by 2-3 days, which for me is already unusual.

Re: T4 -- I haven't noticed much on 12.5 mcg additional T4, but maybe because of influenza I had at the time (I am 6 weeks+ after flu). Then I felt some muscle weakness, but my sleep improved, I was able to fall asleep and stay asleep all night, I was calm, it feels my brain fog was gone and I was more balanced, I got my libido back. Then I increased and started getting a weird rash only when rushed to the toilet with nausea and that made me think it was intolerance as this builds up over time, which would make sense (I am also allergic to milk and corn). Part of me thinks I raised too quickly (after 4 weeks) and should have stayed on this dose for a while instead of going for t4 25 mcg.

A doctor in hospital had a theory that flu had a bad effect on Hashi and this is why I have increased blood flow in my right lobe and all these horrible symptoms...and I really don't know. I literally feel my brain hurts with all this information and what to do next etc.

Radd - over 18 months I have been mainly decreasing dose (also increased a couple of times) probably between 7-9 times. I don't even know if I gave myself enough time to get used to a particular dose? I feel like everything is lagging behind for me

[Hidden in reply to radd]

radd - do you think I could have a flare lasting many weeks after flu?

[radd in reply to Hidden]

Yes. Also, flu symptoms can feel very similar to Hashi attacks ….. right down to the sore throat & swollen neck, when elevated white blood cells (lymphocytes) fight the infection that begins to proliferate in the lymph nodes around the throat causing pain and swelling.

[Hidden in reply to radd]

I actually had the real flu and then bacterial infection and then it felt like Hashimoto flu after, but my white cells were normal ..

[roxanaleah]

Dear cupofcha,

At the risk of incurring negative feedback, I will state that if I had your results and symptoms, I would reduce my dose. Period.

The prevailing opinion on this site that the TSH test has zero value (other than evidence of thyroid under activity) is one I not only no longer share, but feel is harmful to people suffering and confused.

My own personal goal is to arrive at a TSH between 1.5-2.5 and maintain it. I have very specific, detailed reasons which I won't bore you with.

There is a website called hormonesdemystified DOT com written anonymously by an endocrinologist and I cannot recommend his writings on thyroid treatment strongly enough.

I have greatly reduced my dose and the shocking clarity of mind with which I began to function again has only emphasized to me the fact that overmedication comes in varying degrees but the effects are undeniable to me anymore. I know how this thyroid imbalance affects every aspect of our lives, how it permeates the moments of our experience of living with symptoms, extending from physical to psychological and through to our emotions.

Getting it sorted can feel an unattainable goal. But I don't believe that is the case. I just think, in my case, at least, wrong thinking can be a huge obstacle on the path.

My best, best, wishes for your improved wellbeing.

[Hidden in reply to roxanaleah]

Thanks roxanaleah. We have talked before I closed my other account, had some difficulties with email and opened this one. I was on 4 grains and now I'm on 2 1/4 and a crumb I agree, overdose can give you such a fatigue and fog, but for me personally if I drop below to what I am on now, I start to suffer and my FT3 and FT4 are below range at all times, scary (I stayed low for 3 months, it was too long, I was getting worse and worse). My TSH never climbs more than to 0.1, but I'm ok with it, my endo told me that even if stimulated, my thyroid might not produce anything or maybe just a little. I dropped 12.5 and 25 mcg T4 and I will stay on my dose for the foreseeable future my only plan is to switch dosing to once daily as before, when I felt well. I think splitting my dose disrupts my circadian rhythm and doesn't give me so much energy throughout the day. T3 circulates in blood bound to protein, it is not immediately released, it is absorbed, but not metabolised if that makes sense (the half life is 3 days I believe). Also, interesting fact - we don't know what's in cells...we might be properly medicated or overmedicated there (which happened to me last year, labwork with high TFTs, but it took me months to get back to normal as my tissues were full of T3).

I have gone through hormonesdemystified and also through Dr Christianson's blog. I still think every single person is different and some people are okay on lower labs. I am not okay when my FT3 or FT4 hit low or below range, but I don't need them high in range either.

May I ask you a question - how long do you stay on a reduced dose? Is 3 months enough? A couple of doctors wanted me to drop my medication altogether, but I know this would make me feel very, very sick (I have tried last year for a month, it was awful).

Best wishes to you and your recovery