Anyone have any ideas?!

[Clips]

Hi All, I am new to this site. I am searching for information about an unusual issue that seems to flummox Endocrinologists I have seen. I am classically hypothyroid with lowering FT4 (10.6 and going down) and high TSH (14.0). My TPO is very positive. However, whenever I try and take levothryoxine I become very ill with muscle weakness and cognitive symptoms. I know that thyroxine itself cannot cause this but does anyone know of any adverse reactions research that might be helpful, or any recommendations of anything? Thanks, hopeful

[DippyDame]

It would help if we had TSH, FT4 and FT3 results with ranges.

Have you tried different brands of Levo?

Do you know if you convert T4 to T3 adequately?

Levo can be a problem if it isn't properly converted.

First step however is to post any results you have plus ranges

Good luck

DD

[Clips in reply to DippyDame]

Hi, thanks for responding. The results are all i have at the moment, I don't think FT3 was taken. FT4 at 10.6 is just under the normal range (starts at 11.00) and TSH max should be 4.0.

I know nothing about whether my body converts T4 to T3 . . . how would I find out?

Thank you!

[DippyDame in reply to Clips]

You might like to consider private testing -

thyroiduk.org.uk/tuk/testin...

Further info

thyroiduk.org.uk/tuk/testin...

Poor conversion may be the result of low nutrients -

Vit B12, vit D folate and ferritin should all be optimal

Test results showing high FT4 and low FT3 suggest poor conversion

GPs rarely do T3 tests now which is currently the subject of much debate...it is an essential result.

GPs rely on TSH tests which are worth diddly squat after levothyroxine is taken.

It may all sound daunting but as you gain more knowledge that reduces.

Read, learn and take control of your health....knowledge is power.

Your GP, like most, appears to have a poor grasp of thyroid issues

[Clips in reply to DippyDame]

Thanks so much.

[SeasideSusie Remembering]

Clips

What brand of Levo?

Have you tried a different brand?

If you are in the UK, Teva brand is well known for causing severe adverse reactions for many members. Other brands can but Teva is the one we hear most about. It's to do with the fillers/excipients.

[Clips in reply to SeasideSusie]

Standard unbranded stuff only, yes I am in the UK. There seems to be a money issue of the pharmacy wanting to purchase the cheapest brand. The GP tried me with liquid dosage but did not specify a brand, so I ended up with unbranded again, with the same response!

The side effect is a bit scary as I am unable to walk within a week if i take it. I feel so reluctant with it and I do wonder if there is something else going on. The uptake and translation of the hormone is not a straightforward biochemical process from my research, there just seems to be no money in it for pharmas to work on it.

[SeasideSusie Remembering in reply to Clips]

They may be generics, but they have names. Which one(s) have you had

Teva

Mercury Pharma

Actavis

Northstar

Almus

Wockhardt

They have different excipients, you may be reacting to them. Teva especially has caused severe adverse reactions for some members.

[Clips in reply to SeasideSusie]

I have only ever had Teva. Maybe I should try others, thanks for listing them. It is so interesting that Teva has so many documented reactions. It all seems so lacking in joined up thinking! Pharmacists have only ever said to me that the carrier ingredients are benign and cannot cause these bad reactions. Do you know of any research into it?

[SeasideSusie Remembering in reply to Clips]

No, I don't know of any research, just the myriad of posts on the forum documenting the severe reaction to Teva some members have experienced.

Actavis is rebranded as Northstar for Lloyds Pharmacy and Almus for Boots, so if you can get to either of those and get your prescription made up there you should be able to find out if Teva is causing a problem for you. It takes about 6-8 weeks for Levo to full effective (and to leave your body) so don't expect any miracles to start with

[shaws Administrator]

As you are having a serious reaction I would ask the doctor to prescribe T3. Otherwise known as liothyronine. In the UK they have withdrawn the prescribing of it as the Pharma Company raised the price astronomically that the NHS withdrew it without notice.

There is also NDTs (natural dessicated thyroid hormones which also used to be prescribed). They are the very original thyroid hormone replacements, since 1892 and saved millions of lives except the BTA has made False Statements about it recently so that they could remove this from being prescribed too, as well as T3, meaning that those of us who cannot recover on levothyroxine are left high and dry and have no option but to source our own.

Natural dessicated thyroid hormones (NDT) are made from pigs' thyroid glands and it prevented people from going into a myxedema coma and dying and people have enjoyed a healthy lifestyle by its use.

For some unknown reason to me - we used to get NDT prescribed - but the BTA have made False Statements about this well-known and well-established thyroid hormone replacement, containing all of the hormones a healthy gland would do, so NDT was withdrawn, then T3 (due to cost - and what an a perfect excuse) so that only levothyroxine can be prescribed and not everyone recovers on it. Those that do wont be on this forum looking on how to recover their health.

I hope you can get a sympathetic doctor as many of us cannot improve on levo and I'm one of them.

[Clips in reply to shaws]

Sorry to hear your story and hope you are able to source what you need. i have heard of the desiccated pig thyroid. I do wonder whether the rubbish we pump pigs full of has an impact on the withdrawal of it.

Thanks for the info.

[shaws Administrator in reply to Clips]

I know of one NDT -made from grass-fed New Zealand cows. It also doesn't need a prescription and was invented by one of our deceased Advisers as he - out of principles - stated that Levo and blood tests were introduced through corruption by Big Pharma who paid doctors to prescribe plus monies from the blood tests.

[Clips in reply to shaws]

Thanks for the info - do you know how I might access it? Is there a website?

[shaws Administrator in reply to Clips]

It was invented by Dr John Lowe who was an Adviser before his accidental death. He made it with the aim it didn't need a prescription.

His widow, Tammy, now runs the supply of Thyro-gold and there are topics at the top of the page on the following link:-

naturalthyroidsolutions.com...

naturalthyroidsolutions.com...

[phirestar]

I’m in the USA and for the most part mylan (manufacturer) has been the generic of choice. I had horrible reactions to mylan levo and synthroid. I responded to the thyroxine and research each excipient. I could link a reaction to each excipient and some were not very common. All reactions were firsts at 65/66. I suspect that there is an entry occurring of more genetics coming to market. You can google (manufacturer) levothyroxine ingredients. The older ones have info available but I recently encountered a new entry and couldn’t find any info other than recently approached by the FDA. The t4 is chemically identical but the difference is in the excipients. I think this sometimes causes issues for some - it definitely did for me. I’m now taking a compounded t4 in an olive oil suspension w a cellulose carrier and its working for me. I was on Tirosint but it became cost phrobitive.

[Clips in reply to phirestar]

Thanks I will look up some of the excipients and see if I can find anything relating to my symptoms. It does sound as though people have had some scary reactions which is encouraging, I could not work this out at all.

[Hashihouseman]

Excess thyroxine can cause exactly this. It can inhibit intracellular t4-t3 conversión by ubiqination of the DI02 enzyme crucial to most of our t3 production and if our thyroid glands are stuffed we cannot compensate with secreted t3 so duh (idiot endocrinologists) the answer is obvs....

1) split dose levothyroxine to avoid unphysiological peaks and be careful not to get a cumulative build up in excess of long term balance(this is cautious trial and error)

2) take a t3 supplement but not exceeding physiological secretory norms! C.5-10 mcg Max. Preferably split dose more am than pm.

[Saya85 in reply to Hashihouseman]

Hi

That's really interesting and something I and a few others have been wondering recently - esp as standard advice is to take thyroxine all in one go in the morning

I had a dose increase during pregnancy but whereas my previous dose was high t4 and mid range T3, this dose increase meant I was over range t4 (28) and floored T3 (3.3) and felt very sick

I've now gone back to original dose and I'm splitting it morning and afternoon and I do feel overall better (don't get the ravenous hunger I used to get in the mornings after taking a full dose) and possibly feel better in afternoon but difficult to tell yet as early days

Sorry for the waffling - what I really wanted to ask was do you have any research or evidence to support your theory of splitting t4? I'd be very interested to read it and see if my levels settle better.

(I would have to say I disagree that vitamin defiicnecies aren't important - I've never felt better since optimising mine. If you're supplementing T3 it may not matter as much as conversion isn't required but for other health issues it's helped massively. )

Thanks again - if you have any links I'd love to read them

[Hashihouseman in reply to Saya85]

Hi and thanks for all you said! you’re right it is all interesting and the more we open the debate the better! The received wisdom on dosing seems to have come from one main piece of research going back decades that figures as a primary citation in all the subsequent research on gut absorption and bioavailability of levothyroxine. I have the reference somewhere and I’ll dig it out and post it in this thread as soon as I get back to my network . Suffice to say for now that googling absorption of levothyroxine and bioavailability et cetera et cetera does bring up a lot of references to paint the picture and of all the research I cannot find anything which suggests that absorption is anything but between 60 and 80%. Obviously the drug companies and the clinicians want an easy system to administer and probably one that makes the most profits! And whilst there may be an argument that introducing variable absorption makes already challenging titration of dose slightly more complicated I actually think the whole business of dosing and replacement can be so fraught with difficulties and is so critical that it is worth a more holistic view, and that means not dumping massively increased amounts of thyroxine in our bodies in a way in which our healthy thyroid gland would never have done. To my mind that creates more complications then split dousing of levothyroxine throughout a 24-hour period. The way that I tackle this is to assume that my daytime doses are absorbed at the worst rate and my nighttime doses ( away from food) are absorbed at the best rate. I calculate the amount of absorbed per dose using a simple spreadsheet applying different percentages to each dose depending on the time of day and my personal habits with eating and other supplements and then I can adjust the dose accordingly depending on blood test results and symptom diary. It is probably worth stating the caveat that some drugs and even some supplements, like iron, can have even more significant effects on thyroxine absorption through the gut and it is probably best that these are given specific consideration when deciding how to work out our individual thyroid hormone replacement strategies. I would also dare to suggest that if there is any suspicion that you are a poor converter it may be worth doing the DI02 gene test for an explanation of why you may not tolerate high doses of levothyroxine. given the propensity for large doses of Levothyroxine to inhibit DI02 , potentially dysfunctional enzyme activity could be even more vulnerable to T4 induced ubiquitination. What defines a large dose of levothyroxine? Well I suspect the answer to this is that it varies for every individual and scattered throughout much of the research are various clues about the different factors that affect or create individual variation in thyroid metabolism from gut absorption levels to total hormone bound and unbound fractions or the activity of the DI02 enzyme and much more. As far as vitamins and other cofactors go yes of course some of these may be limiting or suboptimal but in an ideal world we should test for such deficiencies before assuming the significance of any strategy we adopt to supplement them. Yes I know cost may limit this and the pragmatics option is simply to take the supplement and indeed for selenium which is possibly one of the most significant cofactors I was supplementing this for several years before I took a blood test for it. In conclusion, for the time being, the evidence for this is difficult to reference because it is spread amongst so much research and authoritative papers and related to better and better understanding of the overall physiology of thyroid function at every level. I suppose at its simplest my evidence would be that the healthy thyroid gland does not raise free T3 levels to the in the way that large doses of levothyroxine has been shown to do. Combine that with the research on the activity of the DI02 enzyme and compartmental kinetics of thyroid hormone transfer and translocation and you can start to build up a picture .... and herein lies one of the crucial issues - that we as laypeople, as sometimes desperate patients having to research this for ourselves are possibly exceeding the competence of the endocrinologist who should be on top of all this on our behalf already. We may make mistakes along the way through lack of background medical knowledge and biochemistry but our application and diligence over joining the dots in various pieces of research seems to exceed the capacity of the professionals to do the same.

[Saya85 in reply to Hashihouseman]

Absolutely agree

The simple logic of trying to mimic what a healthy thyroid gland would do makes sense to me. And if there is no harm in doing so it makes sense to give it a try. Esp as dose increases over time

Thank you for reminding me about the dio2 gene test too- I was about to order it a while back and then forgot. It will certainly add weight to my argument with the GP over poor conversion.

I've tried to keep my split dose away from a supplements and food and the afternoon dose is probably fluctuating in timing but other than that it's not too difficult.

marsaday posted a thread on this recently as we had been discussing the same thing.

I wonder if enough of us did this and compared labs whether we would see a pattern emerging and better T3 values overall as those of us who have faulty dio2 gene I would imagine is quite low in numbers.

Food for thought regardless - will try to research as much as I can also

Thanks again

[Hashihouseman]

and, by the way, I had exactly the same reaction you describe when the idiot doctors first diagnosed and tried to treat! It's a challenge but you can find a way and don't be distracted by vitamins minerals and gluten the hormones are so powerful almost nothing else matters as march as getting them right!

[Clips in reply to Hashihouseman]

Hi thanks so much for your thoughts and encouragement. I have tried taking as little as 2.5ml at a time (12.5mcg equivalent) and my body's response is exactly the same, so I can't see it being 'too much'. I do hear your other advice though and note it.

[Hashihouseman in reply to Clips]

Yes I was the same at the start, my experience has been that I almost needed to allow my body to get so desperate for T4 that it began to need even the small doses more than it didn’t want them if you see what I mean. Another factor in gradually increasing my tolerance for levothyroxine was to start treatment with desiccated thyroid which has its limits because of the excessive amount of T3 each dose will contain in terms of its ratio With T4. As I got used to the desiccated thyroid replacement I was gradually able to substitute increasing amounts of this with synthetic levothyroxine. I suspect that some of the difficulties we encounter with this is that the hormone is so powerful and I’m talking about T4 here (it is not as metabolically in active as some people believe) it is so powerful that it can disrupt even our sick thyroid system which is busy trying to stabilise it self without having any further complications! I suppose at the end of the day it’s fair to say that if we do not replace our T4 we will eventually be in very serious trouble and the answer is probably not complete replacement with T3 unless there is something really quite unusual about our physiology which needs really good professional support to diagnose and treat.

[dtate2016]

Many ideas - and all worth trying. The number one thing that helps me is selenium. 200 mcg every day. I take a methylated B complex as DNA testing showed that I have a genetic weakness with the whole methylation process. All of the other vitamins mentioned in the replies you have received I also take - but the selenium and the methylated B make a quickly noticeable improvement. I am in the US and also take NDT. Synthroid / T4 only made matters so miserable for me, that I once told the Dr. “I’d rather feel the symptoms of the disease than feel the misery of the “medicine”. That was 30 years ago - and it has been such a long, long road back to health! We (as in Hashimotos patients) know so much more now (thanks to sites like HealthUnlocked) - It can be scary and confusing but hang in there - it’s amazing how these ideas and suggestions work! No matter where we are in the world - a Dr. that will listen and truly work towards healing makes so much difference. Please share back what works for you, what you find.

[Clips in reply to dtate2016]

Thank you so much for your supportive encouragement, it means such a lot. How did you go about getting genetic testing . . I guess being in the US you have had access in different ways? It feels like a complex journey. It is already nearly 20 years of struggle, but reading hopeful stories like yours gives me hope.

[dtate2016 in reply to Clips]

It was not my idea to receive genetic testing. I had the most wonderful functional Dr., long in practice and who recently passed away. And he had been treating me for over 20 years very successfully and he wanted to know and so he didn’t even ask me he just did it what’s more he paid for it! Can you believe it? I have insurance but of course genetic testing is not approved for Hashimoto’s disease and they paid very little. I don’t even know how much it cost but he told me not to worry about it.

Until I found this doctor I bounced around from endocrinologist to chiropractor to osteopathic doctor and honestly I don’t even know how I found him I just kept searching kept turning over every rock. Having been likewise prescribed tranquilizers and told that it’s all in my head, well I knew I wasn’t crazy! One Endo chronologist even told me I was obviously having family problems - can you believe that? I had mentioned not one word about my family. And by the way I’ve been happily married to the same man for 42 years we have one absolutely darling now grown-up son. He paid for my trip to Australia a couple of years ago wouldn’t hear otherwise. I don’t mean to brag it’s just the doctors (ad nauseum) - if only they would listen to what we’re really saying.