Unable to Tolerate Synthetic Thyroid Meds

Thanks.  By the way, I have tried Cytomel (T3) and it caused fatigue, "foggy-mindedness", sleepiness and dizziness.  According to my blood tests, however, I am not having a problem converting T4 to T3.  I just find it strange that any level of T3 (at this point) causes extreme fatigue and some muscle weakness, no matter what brand of Levothyroxine I try.

I did recently try Armour, but it caused some side effects as well.  I found out that Armour was bought out twice within the last two years (by two different companies) and since then people have been complaining about the formulation.  I am now looking at compounded NDT to make sure that there are no fillers that I am allergic to, etc.

Thanks.  I wonder why most endocrinologists do not recommend NDT if so many people cannot tolerate synthetics.  The only thing I have heard is that NDT can vary from batch to batch.  However, if some people cannot tolerate Levothyroxine, there seems to be no other other choice.

In the UK the NHS won't fund NDT as levothyroxine is a cheaper drug. They even are reluctant to prescribe liothyronine as its more expensive. I believe it's the same with NDT not everyone reacts well, but like you say it's the only other option to synthetic that I know of

Just to let you know, I have been taking ThyroGold for nearly a year and have not had an issue the quality. 

​Talking of quality, are you aware that thyroxine is allowed to vary +- 10% from it's stated efficacy?  Which means that one might be getting anything from 90mcg to 110mcg when taking a 100mcg tablet! To minimise this it is best to stick to the same brand of levothyroxine.

Thanks.  Yes, I am aware of the varying potency between generic levothyroxine.  In my case, however, I can't seem to tolerate ANY Levothyroxine (even if it is brand-name).  I guess not many people have that problem or we would hear more about it.  Fortunately, there is NDT available.

Thanks again.

Thanks.

Hi Barbara,

I didn't realise this was the case with levothyroxine. Do you know if brands differ in the UK? All of my tablets say "levothyroxine" but I don't know if it's all generic in the UK. Sometimes the packets are different colours etc.

I can't tolerate ANY levothyroxine either. I'm allergic/intolerant to maize starch which is in all of the synthetic thyroid medications and most of the NDTs too. I think there are about 15% of us for who synthetic meds don't work.

Hi Caz, you need to get the levothyroxine from the same manufacturer each time to have the best chance of it being consistent. I found that for me Wockhardt were the best (i.e. caused least itching). They only make 25mcg tablets.

Thanks, Barbara.  In my case, even getting Levothyroxine through a compounding pharmacy here (with no fillers in it but Vitamin B2 and Ascorbic Acid) causes fatigue and weakness.  For some reason, my body just doesn't like synthetic Levothyroxine.  It causes muscle weakness (especially in my arms) and fatigue.

I too have a problem with the thyroid meds and am now on ThyroGold. I can also take the liquid thyroxine made by TEVA, though another liquid thyroxine made me swell up. You can get liquid thyroxine on the NHS, however it is expensive so you will probably need to push for it. I buy ThyroGold off the internet without a prescription - it is classed as a nutritional supplement so people can legally get it without a prescription. It is a proper NDT though, so only take it if you have been diagnosed with hypothyroidism.

I've heard of ThyroGold; I think it's made w/cow. I've actually purchased Pure Encapsulations Thyroid Complex at the recommendation of my doc. It seemed to have worked for a while, but I tried not taking it everyday after I went on WP Thyroid. WP was okay; I lasted a couple months on it but all the strange, uncomfortable symptoms creeped in.

There's just way too much to type regarding the battle I have had w/all thyroid meds over the last 10 years. It's so frustrating. I always have to go off, then feel sooo much better, more clear-headed and somewhat "normal".... to symptoms coming back, once I'm off for a couple months. I've journaled meds, diet, different strategies if the Med, etc. etc. Its a big puzzle. I decided yesterday (a Saturday, since I was not working) to try a synthetic again-Levoxyl...fourth or fifth time...and not revert back desiccated pig. Well, I'm still feeling the horrible effects of my hell yesterday...symptoms that were NOT there Friday or when I woke up. I know now after yesterday, I won't take a chance ever taking that again. Now I know. can't even begin to explain how I felt.

Sooo, I may try the ThyroGold, thanks! I just wasn't sure if it was safe. Good luck to everyone out there! I know, it sucks!

I've been on ThyroGold since June 2015 with the blessing of my UK GP who is running monthly blood tests for me. Yes it's a bovine NDT (made from cow's thyroid). Like you say, it was scary taking it, not knowing whether it was safe.l (I'm very wary buyo g stuff off the internet).

WP thyroid made me swell up - it's a porcine NDT that's made without fillers, so it must be the pork that I'm allergic to. I have a number of food allergies & intolerances and can only tolerate eating pork occasionally. I've had no adverse effects from ThyroGold - I just wish I'd found it years ago. If you are in UK you will have to pay 20% VAT and a customs handling charge of £8 on the parcel before Royal Mail will release it. Hope it works for you too.

I am now off all thyroid meds and am due to have my thyroid levels rechecked in about 2 weeks.  Lately, my TSH has hovered between 7.1 and 8.6.  My endo stated that some people in their 50's feel better with a TSH between 5 and 7.  I guess I'll find out soon what my TSH is.  I am not as weak, however, as I was when I was on thyroid medicine.  Also, I found out that I was low in Vitamin D and that can cause muscle weakness.

I usually end up going off all thyroid meds, as they make me feel worse. I just don't get it. My TSH has always been around 4.5--the highest about five years ago was 6...but most endos I've been to say it needs to be below 2.5-ish to feel best. I've had nothing but contradictions and confusion from all docs. After being off meds for about 1.5-2 months, though, symptoms start creeping back in. Again, this past Saturday, I only took 1/2 of .25 of Levoxyl...had tried it at least four other times before and lasted a few weeks...however never again. I'm still feeling crappy today. Not sure what the answer is.....still.

Have you ever had your adrenal glands checked? The saliva test is more accurate. I suggest you research the relationship between adrenal glands and hypothyroidism

Thanks.  I did have my adrenals checked years ago and another Endo's office (using the ACTH test) and everything was fine.  I'm not sure I ever had a saliva test done, however.

When my TSH was 1.5, I felt weak all the time and lost body hair.  (I was on 50 mcg. of Levoxyl).  I have felt better now that I'm off of all thyroid meds.  I think the TSH range has changed through the years.

I've just pm'd you the name of a website with ideas of other things that might help

I concur with what you've already worked out: you need thyroid meds but none of them are helping. I've pm'd you the name of a website you might find useful.

Thanks.

Dear @barbara98940. Could you please dm-me the websites as I am going through the same issues most of the people here are experiencing. Cannot tolerate any levo with very serious side effects (problems breathing, not being able to sleep and many more). I would be really grateful.

I know this thread is quite old, but I have the same problem of not being able to tolerate thyroid hormone (synthetic or natural) despite having hypothyroidism. Can you send me the link to the website as well?

Sandra, were you able to find relief from your symptoms? I've spent years looking for an answer and still don't have one.

A really good website that's a UK charity, is thyroiduk.