Levothyroxin dose too small/big?

[samaja]

Hi, I am new here and trying to find some answers to my (largely) self medicating dilemmas. Having been officially diagnosed with Hashimoto's in March after four years of actively investigating my heart (palpitations after exercise), back/spine (stiffness, pains, tremors in limbs), and having suffered joint pains, fatigue, anxiety, weigh gain etc on and off for years, I was started on Levo (25 mg) with all blood results 'normal' but for TSH 4.5. Unfortunately was not able to this day to get these initial results from my GPs but know that T3 and T4 were in range so the doc just put me on Levo 'for three months' and sent me to the pharmacy where I was enlightened that I am getting a free prescription as ..I will need to take it permanently.

After some initial hesitation and a private appointment with an endo in April (as I have a friend with Hashimoto's abroad and had an inkling it might need to be investigated) I was diagnosed with Hash myself and started taking Levo at 25mg and then increased to 50 after two months. There was some improvement initially but still had a rough time, especially during two trips abroad to warmer climates in May and June, which were quite exhausting despite one of them being a regular holiday! July feeling tired, August the same till during another trip abroad I started to feel particularly rotten (hyper as it turned out) and had more tests done there (TSH 0.099) and talked to an endo who has Hash herself and immediately suggested stopping Levo for a while, going gluten free, taking Vit B1 and magnesium for muscle shaking and spasms. Nothing of the sort from my endo or GP here of course upon consultations on coming back though they agreed I need to cut back to 25mg which upon trying intermittently with no Levo at all was still producing hyper symptoms. At that point I was reading extensively (Wentz, Peatfield, Haskell and the Internet of course) and started to see that there was a lot more to Hash than just taking thyroxine!

All of September I was trying to raise my TSH to around 1 on advice of my foreign endo but after one TSH test scheduled by my GP earlier on for the end of August which showed increase to 0.14 after two weeks on no/cut Levo and a refusal to have another one at the end of September I was in the dark and the only thing I was sure about was that I started having a lot of palpitations, nasty muscle sensations (tremors, burning, spasms you name it), insomnia, extreme anxiety and hypoglycemia especially in the first half of my cycle (which is definitely a pattern) and was unsure whether I would be able to travel abroad again at the beginning of October for my Mum's special surprise birthday party I was organising in the meantime.

I did go in the end and took the chance to do a host of blood tests as well (no need for referrals or any paperwork there just cash, 8-)) some suggested by my foreign endo and some on the basis of my reading.

TSH at the beginning of October 4.099 (range 0.55 - 4.0),

FT3 4.51 (3.5-6.5),

FT4 14.44 (11.5-22.7),

TPOAb - 302

TgAb - >1000

Vit D3 23 (30-80),

Ferritin16.4 (10-291),

B12 729 (211-911) (in March it was 527 here)

Morning Cortisol 289.1 ng/ml (43-224)

DHEA >30ng/ml (1.3-9.8)

ACTH 24.20 pg/ml (5.00-46.00)

Progesteron (which I take in the second half of the cycle on advice of my gyno as a progesten tablet) and oestadriol within range.

Glucose in the morning (no breakfast) 81 (70-99)

Alkaline phosphatase 69 U/l (38-126)

No gluten or adrenal gland antibodies.

A month earlier I had my magnesium, potassium, sodium and calcium checked and all were within range (as was iron then though so not sure how reliable these were)

For the last few years my MCH and MPV are testing high while leukocytes low.

Last month with I started quite heavy supplementation with Vit B1 100mg, B3 100mg, B6 50mg, Multivitamins and Minerals, Magnesium 300mg, Vit C 1-2g, Vit D3 400 IU, Iron 40mg, and successively introducing Probiotics, Vit E 400IU, Betain with Pepsin, Zinc (today 22 mg). Thinking about Biotin and NAC. Some of the above have been kinesiologically tested to arrive at the make and dosage as was selenium to which I had a bit of a reaction on trial and which showed in kinesiological testing not to be a priority. Seeing my kinesiologist next week for more tests on supplements and foods. Also taking adaptogens from my herbalist for adrenal and thyroid support (Synachten test done by my endo here was normal of course). Adrenals are something I worry about because I am a habitual worrier and have always responded to stress poorly.

In the meantime, my Levo (now Euthyrox which is easier to divide) was reintroduced by my foreign endo as a quarter of 25 every other day. Attempts to increase this into a quarter every day or half a tablet resulted in more symptoms (palpitations especially and insomnia) and a couple of hyper episodes plus increase in hypoglycemic sugar drops - had to eat even twice at night! All this most pronounced in the first half of the cycle although the progesteron phase seems to be now affected more as well though I am definitely more hypo now (dry skin, tiredness). Had a cold for two weeks with coughing and my vocal cords/voice seems to have a frog all the time.Suspect a connection with starting probiotics earlier on but postnasal drip continues still. Decided to do Adrenal Stress Profile and Rhythm female hormons profile testing and was just sent the tests from Genova. When is the best time for Adrenal Stress Profile BTW, any time of the month?

Tried to increase Levo to a quarter every day for the last few days but my pulse gets quicker and I cannot sleep at night so today had a break. Muscles seem to be sore and shake a bit at times and have a pain between my shoulder blades and chest seems a bit difficult to expand fully. In a weird way I seem to be getting stronger (supplements?) and weaker (hypo?) at the same time. Working on my diet/leaky gut, liver support, relaxation seems a bit much!

This has become a very long post but I guess I had to tell it all to somebody as otherwise I have very little support with it all with only my husband and occasionally my foreign endo on the phone to talk to. My endo here was battered into switching me from private into a regular NHS clinic but will only discuss possible T3 switch while leaving me to my own devices ('Keep on doing what you are doing at the moment and then will see.') Been through 4 GP so far with only one showing a bit of understanding but admitting frankly she can only give me TSH tests if I am under an endo (even foreign) supervision, possibly every month rather than 3. Last visit to GP on Wednesday with my post nasal drip was massively frustrating with him telling me to live a full life and that my results from March were normal so there is no need to test anything (like folate I wanted) or retest either as my ferritin and D3 here were within range.

So he final question is - anybody having any ideas about my levothyroxin dosage/ the way forward after all that?

[shaws Administrator]

Some people cannot tolerate levothyroxine. It is not the levothyroxine itself but the fillers/binders which may be causing a problem. That's why when we collect our prescription check what you are given and try to keep to that make for a few months. If you are not improving, it could also be that your body is not conducive to a synthetic hormone or that maybe your dose isn't high enough. Ask the pharmacist is there an alternative which can be provided and so on until there isn't another generic you can try. There used to be a Brand levo called Eltroxin which suited many people but even they said that after being on it about 15 years something changed and they weren't well. The suppliers stopped it for some reason.

Then you can ask to have a trial of T3 to a reduced T4 which might benefit you and if still having problems ask for T3 alone. I found T3 quite calming but it is a trial and error to find one that suits.

There is also a natural dessicated thyroid hormone which is hypoallergenic which may be suitable. Some Endocrinologists may prescribe but most wont as False Statements have been made regarding natural dessicated thyroid hormones and the UK guidelines do not recommend it.

[samaja in reply to shaws]

Thanks Shaws. I am considering the T3/t4 or T3 alone options.

The fillers might be a problem. In both brands (Levothyroxine and Euthyrox) I have taken so far there is maize starch and magnesium stearate and other staff as well. I have started to wonder about these as I seem to be developing oversensitivities by the hour. A few weeks ago I discovered the hard way that I cannot handle any stronger smells (especially chemical like household cleaners or anything with Parfume (fragrance) and had my first strong reaction to strong sour/bitter taste last Thursday. Today I had get rid of my sea salt with a caking agent in it and just thinking about corn seems to tighten my throat. I think my body is trying to tell me something I just was not listening very well...

[Clutter]

Welcome to the forum, Samaja.

There are a few members who struggle to take thyroxine because of low adrenals, iron and ferritin and can only tolerate very small doses until the other issues are addressed.

Try taking an antihistamine an hour before your thyroxine and see whether there is any improvement. Some people are allergic to the fillers in thyroxine. Your FT4 and FT3 aren't currently too bad but they could be better and will drop without some form of thyroid replacement. If the antihistamine doesn't help ask your endo to prescribe a trial of liquid thyroxine which is free of fillers.

Although your ferritin and vitD are in range they are very low. Ferritin is optimal at 70-90 although some say half way in range is necessary. A lot of members take 210mg ferrous fumarate so 40mg may not be enough. Take each iron tablet with 500mg-1,000mg vitamin C to aid absorption and mitigate constipation.

400iu vitD3 is an infant's dose. We need 2,000iu daily just to maintain vitD levels Oct-Apr when ultraviolet light is too low to stimulate vitD. I recommend 5,000iu daily for 6/8 weeks to boost your vitD levels and then 5,000iu on alternate days. VitD high in range aids conversion of T4 to T3. Your range is very low, mine, and most I've seen consider vitD replete 75-200. >250 would be possible toxicity but it is rare to become toxic when supplementing <8,000iu daily.

You should notice improvement in those of your symptoms which are due to low vits/minerals 6/8 weeks after starting to supplement.

I can't advise on adrenals, cortisol or your other bloods, but others will respond. If not, post a separate question asking for advice on adrenals and cortisol and add a link to this thread and I'm sure you'll get advice.

[samaja in reply to Clutter]

And thank you Clutter as well. I think I might be one of those people who have to address other issues before 'fixing' the thyroid.

I did not know there was liquid thyroxine. Thanks for pointing it out. I was just wondering whether taking my thyroxine in the evening might help at all as some people here were very happy to do that. Sometimes I fall asleep after my (early) morning dose quite well but there are times when it makes me more alert. There just seems to be no rhyme o reason to it all over longer periods so I cannot see any obvious pattern other than my monthly cycle but even that fluctuates a lot.

I made a mistake with my Vit D - it is 4000 in two doses of 2000. I take one with Isoflavonids after testing with my kinesiologist who also said that my Iron supplement could be better but could not pinpoint another one among her range. The whole question of supplements is not quite straightforward because they also can have various fillers and some brands appear to be good with their manufacturing process but my response is not great (selenium being an example of that).

I also did an elemental hair analysis test abroad and was just notified the results have come back so on Tuesday I should learn more about possible deficiencies which at the moment I am trying to address a bit blindly. Obviously my GP would not consider any testing for vits/minerals necessary as I am such a picture of health on paper

[Clutter in reply to samaja]

Samaja, we're all a picture of health when we're in range. Doesn't make sense to me that 20 and 400 are both 'normal' in range 20-400.

[samaja in reply to Clutter]

Tried to make the same point to GP on Wednesday but was told that the Holy Grail of evidence based medicine says so. Amen!

[shaws Administrator]

If you have a sensitivity the following wont apply to you.

25mcg is an extremely small amount of levo and I will give a link which may be helpful:-

Go to the date November 28, 2003 and there are other topics at the top of the page which may interest you. These are a couple of excerpts:-

1. (re taking 50mcg levo) - My doctor prescribed 0.05 mg [50 mcg] of Synthroid. He refuses to increase my dose even though my symptoms have gotten worse

2. Unfortunately, your doctor prescribed for you what our clinical and research experience has taught us is the least effective approach to thyroid hormone therapy—the use of T4 alone. Synthroid, of course, contains only T4.

Moreover, the dose he prescribed, 0.05 mg, is extremely small. It’s so extremely small that it's highly unlikely you'll benefit from it in any way no matter how long you take it. On the other hand, that small a dose may actually slow your metabolism more and worsen your symptoms. Perhaps this has happened, in that you say your symptoms have worsened since you started taking Synthroid.

It’s tragic that millions of patients such as yourself suffer needlessly for years because their doctors prescribe extremely small doses of T4 products. I advise all patients such as you to persuade their doctors to prescribe a product that contains both T4 and T3, such as Armour or Thyrolar. I also advise them to see to it—one way or another—that they take a high enough dose for it to be effective. Otherwise, the patients are almost certain to continue suffering.

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

[samaja]

Very interesting! I had a look at the website and wonder whether Dr Peatfield's metabolic clinic assesses metabolism in a similar way. His approach is to start low as I am doing currently but then increase after w few weeks which seems to be a problem. The worst thing is nobody wants to investigate such things as receptor blockage or conversion problems which were my other ideas.

[Angel_of_the_North]

Artificial progesterone is nasty stuff (just search the web!) and apparently acts biochemically more like testosterone - which can definitely give you anxiety and a hoarse voice/dodgy throat. Can you get bioidentical progesterone instead?

[samaja in reply to Angel_of_the_North]

Thanks Angel. I must say that I usually felt a lot calmer and slept better when I was taking this progestogen but this seems to have changed as well now. I will definitely investigate biodentical progesterone though I do wonder how effective it is as read mixed opinions. Any ideas?

[lucindajethol]

God what a lot of mixes you are taking, are they trying to poison your body??

Why don,t you change your current GP. Allow yourself a break from all these additives you are putting into your body and take it from there.

[samaja in reply to lucindajethol]

Suppose you do not have full blown Hashimoto's to cope with. My current GP thinks my test results are normal and there is no need to supplement anything but thyroxine which I am not responding to in a standard way unfortunately, but that is not his problem anyway...