BAD reaction to Thyreoid meds?

[flyv123]

n'Finn, do you mean I should take the whole dose at once? In the morning?

I have read people discussing both options - and also people saying that it doesn't last long in your body so break up the dose. confused!

I will try anything at this point. (the problem in the middle of this is trying to figure out how to help myself whilst trying to help my son... i am sure that it is making the situation more difficult)

Thank you! I will check out ordering from a different place - maybe the Netherlands also!

[Hansen]

n'Finn, do you mean I should take the whole dose at once? In the morning?

Både ERFA og ARMOUR anbefaler dette på sine pakningsvedlegg. Det er for å etterligne kjertlens doseringsmetode mest mulig.
Så skal det sies at mange har dårlige binyrer og kan ha behov for multidosering, men metoden bør ikke være et første valg.

T4 har en "halv life" på 1 uke. T3 bare en dag.
Dosen kjertlen gir om morgenen er "beregnet" til å være slutt før kvelden. Da skal også kortisolverdien være halvdelen av morgenmengden.
Ellers får vi jo ikke sove.......

Og - tenk på deg selv, så hjelper du din sønn.......

[Anisa]

The history of my illness is that I likely have had the problem for a very long time - I can see symptoms ranging back into my 20's. However, after the birth of my son 6 years ago I got drastically worse. Over the 6 months after he was born, I became so disoriented and 'foggy' that I started drinking coffee for the first time in my life. I drank an entire pot just to feel like I could put one foot in front of the other. The symptom list was long but the brain fog and fatigue were the worst. I thought I had a brain tumor.

Finally, a doctor in the US (when I was visiting my family) took a thyroid test and told me I needed immediate treatment when I got back to Denmark. So I went to my doctor here, showed her my results (which I don't have now sadly) and she started my on eltroxin. Over time, I got 'better'. I was never the same as my old self again but I could function well enough.

About a year ago I started feeling worse again, I researched and found that the eltroxin formula had changed and that others were also experiencing this too. My doctor said there was nothing to do about it. Until I found the link for the Thyreoid at Glostrup Apotek where she has now proscribed me Thyreoid.

I have started taking it again - dividing 60 mg into 4 and taking it over the day. The intense headache in the afternoon is back, but only for a short period. The joint pain is back, but only slightly. I will keep taking the 60 mg for a week and see how I feel. I can say that I am starting again to have the 'foggy brain' problem which had temporarily gone away during the first week I was taking Thyreoid. So I'm drinking a lot more caffeine again - but that will at least help me until I can increase the dose.

Hej Flyv123

Hvordan har du det mon nu? Jeg kom til at tænke på dig da jeg læste bogen "Sköldkörteln och dess sjukdomar" av Hans Lemker - en svensk læge, der selv har sygdommen. I Kapitel 16 beskriver han sit eget forløb - meget relevant for os alle, forøvrigt, hvor han bl.a. skriver følgende om reaktionen på behandlingen med Levaxin:

"Behandling med 0,1 mg Levaxin per dag insattes därför omedelbart igen. Resultatet blev en form av "abstinenseffekter" med våldsamma migränattacker, svidande smärta i hjärta och tryck över bröstet, varför akutsjukvården måste uppsökas. Orsaken till effekterna var överdosering i förhållande till hur lång tid som kroppen levt med brist på sköldkörtelhormon."

Altså meget lig din beskrivelse af opstarten af Thyroid fra Glostrup. Konklussionen må så være, at jo længere ens krop har måttet undvære de thyreoideahormoner som findes i Thyroid (T1,T2,T3 og Calcitonin) - jo voldsommere reaktionen kan blive på tilførsel af disse - mens kroppen skal "lære" forfra at nyttigøre dem. Han tilføjer dog, at efter hvad han ved, er det omtrent 10% af patienter der oplever en reaktion som den han og du beskriver, mens de "resterende" patienter oplever ikke samme voldsomme overgang.

Det er et stort dilemma i denne fase, hvor vi på samme tid hverken kan undvære disse hormoner, eller tåle dem, når de tilføres igen, hvor vi heller ikke kan estimere på forhånd, hvor længe det varer inden kroppen igen kan nyttigøre dem.

Hans Lemker skriver en hel del vigtigt om forløbet af sin nehandling, bl.a. "Efter mer än 2 års behandling med Levaxin kunde inte en optimal dosering uppnås. Även om alla kroppsfunktioner normaliserats uppstod hela tiden problem med undertryck i huvudet som åtgärdades med höjd dos som efter några dagar ledde till övertryck i huvudet med våldsamma migränattacker i en till två dagar och som försvann när dosen minskades. En märkbar förbättring har dock åstadkommits genom övergång till behandling med en kombination av Levaxin (T 4) och Liothyronin (T 3)."

"Detta har underlättat förutsättningarna för en bättre hormonbalans och ett bättre välmående. Orsakerna till detta är inte klarlagda men kan troligtvis förklaras av en onormal känslighet för T 4Levaxin och att omvandlingsprocessen av det syntetiska T 4 till T 3 skapar trycket i huvudet eftersom detta tryck oftast upphör direkt efter intag av endast T 3. T 3 är mycket kraftfullt i sin verkan och innebär en direkt effekt på kroppens ämnesomsättning och cirkulation efter intag. Det är därför fortfarande mycket svårt att hitta en perfekt inställning av dosen som fungerar bra under dygnets alla timmar och med kontinuitetet."

Han skriver også at efter 5 år i behandling blev formen fortsat bedre. Nok til at han "kunna komma igen i ett nytt arbete som företagsledare och märka att kroppen och framförallt huvudet fungerar som förr igen är en stor glädjeupplevelse även om hormonbalansen inte gått att få perfekt varje dag. Förbättringar upplevs dock hela tiden."

Jeg håber at du kan læse svensk for i så fald kan du læse om bogen i denne tråd her på forummet, hvor der også findes oplysning hvordan bogen kan skaffes, men det er ikke hele bogen som handler om hans eget sygdomsforløb. Det skriver han om kun i Kapitel 16. Resten af bogen rummer nogen af den bedste info om sygdomme i skjoldbruskkirtlen inkl. en fantastisk beskrivelse af symptomer og behandlingseffekten for hver enkel type.

Håber du har det ikke alt for skidt, Flyv123

[Blondie]

Skal tro om det er frekt å kjøpe denne boken i gave til fastlegen sin?

[flyv123]

Hi Anisa, It is now one month since I last wrote. I have been taking 3, 60 mg tablets first thing in the morning. (thanks to n'Finn) This is working.

My reactions got less and less over time. I have written previously about my son's diagnosis - so I will explain a little of what has happened. I have been doing a LOT of research on his illness (and the category of illness: neurodegeneration with brain iron accumulation). Anyway - it seems that other types of illnesses that fall into this category (Alzheimer's, Parkinson's, etc) seem to respond to a ketogenic diet (80% fat, 15% protein, 5% carbs). I suggested to my husband that we try this on our son - and he was (and is) naturally reluctant.

(after all - the medical profession tells you that fat is bad, that carbs (especially fibrous grains) are good, etc. - This is the same medical profession that has served me so well. )

So, I decided to try the diet on myself. That was 2 weeks ago. At that point, I was feeling OK on the thyroid meds but not good. But I'm still fighting with my doctor who thinks that I should not take 3 Thyreoid pills a day (because that isn't how the pharmacist at Glostrup Apotek converted the amount of eltroxin I was taking - he said on 150 - 200 mg of eltroxin that I should take 1.5 Thyreoid tablets a day). I keep telling her that 3 - 4 of the Thyreoid pills makes me feel 'fine' and any less makes me foggy, slow, cold, etc. We'll see how that goes.

Anyway - now that I've been on this 'diet' for 2 weeks I feel fantastic. It is really weird - but I'm wondering if the combination of grains or carbs or ...??? could have been seriously affecting me and my thyroid - and that the combination of the 3 pills each morning plus this diet (which eliminates a lot) is 'healing' me somehow?

For my son's sake, I am going to keep on doing this diet so I can convince my husband it is safe and also so I know 'how' to make the meals, etc. for him.

Thank you for the book information - I'm going to try to find it. I hope that some of my journey has helped others too. I really thought I was going crazy!

Blondie - I agree, I think I will buy the book for my doctor :-)

I'll post back in a while and let you know how I'm doing. So far, in 2 weeks, I've lost between 4-5 kgs. I know it is mostly water weight, but considering the fact that I couldn't lose at all before (even on a liquid diet of 600 calories per day in shakes) - this is a miracle. How I feel is even more amazing - I caught myself 'skipping' down the stairs the other day. That is a LONG, LONG way back from the hole I was in for the last few years!

YEAH!

[Hansen]

I suggest you write about low ketonic diet ? Norwegian Dr. Følling first discovered this : fenylketonuri. If so - this is serious !
Some enzyme is missing results in too much of the aminoacid fenylalanin. This I belive is hereditary in some way ? and it's a simple bloodtest to diagnose it.

And tell your fysician that "You are the answer" and that he? mys ask you how many pills You need. But he is choherant to the labwork with out any experience with you. I hope he will reason.....

And keep up the good skipping

[flyv123]

Hi n'Finn, I will write here some more about the ketogenic diet I am following. Please remember, I started this diet to 'test' it before trying it out on my son who has a fatal illness. I did not start this diet to lose weight. The side effect of the diet has been extremely positive. I have lost 5 kilos in 14 days (I'm sure much of this is water), my skin is unbelievably soft, my energy level is super high, and some of my other hypothyroid symptoms have gone away (coldness, slight fogginess, up and down energy, etc).

Why has this diet had these effects? I don't know - it could be removing all grains, yeast, and sugar (although I ate fairly low carb already - below 40 grams per day on most days). It could be the increase of animal fat. It could be the coconut oil. It could be the combination - I don't know.

First, I will mention that PKU (which you pointed out in your last post) is a inherited disease. I do not have this. Secondly, I will point out that ketosis is a natural state in our bodies (upon awakening, for example you are in ketosis unless you've been sneaking food all night). There is a dangerous type of ketosis that some have heard of: http://en.wikipedia.org/wiki/Ketoacidosis. Ketoacidosis is usually found in people with diabetes type 1. From this article you can see: "Normal ketosis, by contrast, is a functional aspect of fat-based energy metabolism, induced by prolonged fasting or a low-carbohydrate diet."

I could go into all the research I have found related to Parkinson's, Alzheimer's, aging, and other degenerative diseases (and also epilepsy) - but that is easy enough for anyone to Google. It is all this research that led me to this diet.

I also found some great information here: http://www.paleonu.com/get-started/ and on that page is a link for losing weight also. Anyway - I did not do the losing weight part. What I did is to use my lean body mass (60 kgs) and determine that I should eat 60 grams of protein per day. So that is appx. 240 calories. Then I should have about 5%-10% of my calories in carbs (keeping in mind the cannot have list), then I have the rest in fat.

It is hard to get this much fat - but here is how I am doing it:
Coconut Oil (I add 1-2 tablespoons, in total for the day, to my coffee or tea over the day)
Butter (organic, pasture fed where possible)
Cream (piskefløde 38% in DK)
Beef stock (from the beef that I've boiled for eating)
Sauces made with any of the above plus some spices

I am using coconut oil because this is a medium chain oil that has shown some positive results in people with Alzheimers. Many people just use cream but my stomach cannot take that much cream.

The biggest change to my diet (from my previous low carb version) is the increase in saturated fat - and the monitoring of the polyunsaturated fat (PUFA). I am keeping PUFA at or below 5%.

What about all this saturated fat? Well I read The Cholesterol Con a long time ago, so I'm not worried about it. Here is an interesting review for those who haven't read it: http://www.proteinpower.com/drmike/statins/646/
I also believe you can see excerpts from the book a number of places online.

Anyway - I'm not going to argue about the saturated fat because frankly my son dying of a heart attack is the least of my worries! And me? Well I'm a major candidate for a heart attack or something else if I don't get the weight off my belly so I'm taking the risk.

So - the interesting thing for me is that I tried this diet to see how I could help my son. It has somehow had a wonderful side effect of giving me huge amounts of energy, letting me drop 5 kilos in 14 days, and seemingly helping my thyroid meds work in a better way than they were before.

What else do I eat? Well I'm not very hungry to be honest - but I'm trying to stay with the appx 1500 calories I was eating on my low carb diet. I eat the best meat I can afford, a lot of eggs, avocados, some bacon, coconut bread (I make myself), and a few veggies.

I hope that answers your question. Honestly - I'm as surprised as anyone that something in what I'm doing has made such a huge difference for me.

If any of that helps anyone else - then that is wonderful!

[BeritM]

Fantastiske nyheter, flyv123!

Som jeg har sagt før; ingenting er som litt glad- nyheter her på forumet:-)

Takk for at du deler dine gode erfaringer. Utrolig at du kan kjenne så forskjell "bare" ved å endre kosten.

[Hansen]

Ohh - glemte at jeg kunne skrive på Norsk

Jo, det du har funnet ut er jo i tråd med hva mange ernæringseksperter mener.
Myndighetenes kostholdsråd ligger dessverre langt tilbake i tid - faktisk fra den gangen kostholdet var nærmere slik det burde være......!

Så fint at du fant ut det !

[akas]

Så flott at det går bedre for deg, flyv123,
og takk for at du deler med oss andre.

Jeg ønsker deg lykke til videre, både med egen framgang og med din sønn.