Unacceptable side effects of Levothyroxine

Hi Grainne, you're doing great, believe it or not. The diet changes you're doing are helping and you'll be glad for it in the long run. By making fantastic diet choices, you've eliminated many health variables, and the given is that by eliminating gluten (absolutely no cheating on this one), cutting out the smoking, you are decreasing the load on your immune system. Yay! This goes a long way towards thyroid health since hypothyroidism is autoimmune disease.

Also on your side is that your dose is fairly low. So you're in a good position to turn the disease around. I was able to get my thyroid disease into remission for ten years. I was living in a warm climate and drinking lots of protein smoothies. When I cut back on the smoothies, the thyroid disease raged. When I moved to a colder climate, it worsened substantially.  The stress of the move also likely contributed to the re-onset of the disease. Of course, on the meds, I couldn't think straight enough to realize these are the most likely factors that brought about remission, and re-onset.

Remaining... Have you supplemented? You'll need specific thyroid supplements, coblimated Bs, D, C, kelp, tyrosine, boron see some people find helpful. You'll also need general vitamins and minerals. Also, high protein diet, protein powder, amino acid supplements are helpful.

I spent 5 years in all messing with the meds. They seem to make the problem worse and cause severe autoimmune disease, worsened thyroid disease, fibromialgya, rheumatoid arthritis, bone loss/ brittle bones... The ones that I've found to have the least side effects are the non prescription. I used those to wean off the levo. I'm currently Using amino acids and acupuncture to wean off the non prescription stuff. I don't know if what I'm doing now will work. The meds were killing me and I feel better off them even though my thyroid disease is very advanced. 

Hi Catherine, as you've been doing this for a while and it seems to be working from a symptoms viewpoint - it would be interesting to see what your blood test results show. Important levels to check as well as TSH, T4 & T3 are vitamin B12, vitamin D, iron, Ferritin, folate. x

Hi Barbara, yes, blood tests should be interesting. I'm not sure how much info they'd really offer though since I'm someone who's blood work wasn't super out of range, and my diagnosis was strongly based on the giant cyst, symptoms, mildly elevated TSH, (not crazy high TSH), high rT3. The test for Hashimoto's antibodies was negative, although this is typical in 50% of cases. 

I suspect that since my diagnosis was largely based on the huge cyst on my thyroid, that blood tests will likely show improvement, but not the dramatic improve the I feel. 

However, vitamin D and cholesterol and triglycerides levels do seem to more closely parallel the advancement of the thyroid disease for me, and could be a better indicator if thyroid disease than the actual thyroid tests. I would expect dramatic improvement in these.

Meanwhile, the amino acids offer quite an improvement in overall health, in addition to getting off the thyroid meds, and seem to work best when I athe them religiously in high doses. I've been using acupuncture as well throughout my disease.

While the thyroid symptoms overall are dramatically better, the challenges with the amino acids are:

- Labeling laws don't tell me the source of the amino acids, so other than allergens that are not in them, no ingredients are listed. They only list the quantity of the amino acids present in each tab.

- knowing I have many food sensitivities, I dislike not knowing the ingredients as there is very likely some ingredient that I react to. This could be impeding my progress.

- I'm looking for a natural high protein source, free of allergens, oresevatces and additives. This is extremely difficult to find, and I'm considering making my own egg white protein to see if this offers an improvement.

- my wonky thyroid flashes (thyroid swells up and heats up the surrounding area) have continued, and are worse when I don't keep the amino acid levels high. This could be autoimmune or other problem.

- the amino acid therapy isn't perfect, but is a dramatic improvement. The biggest improvements are the decrease in brainfog, incredible digestive improvent and huge decrease in overall pain.

- the thyroid cyst is still wavering with varying levels if inflammation, though it  seems to be decreasing  slowly.

- I feel like I'm oscillating between hyper and hypothyroid symptoms and am having body temp regulation symptoms- all symptoms I had early on in the thyroid disease. These symptoms seem worse, but could actually indicate reversal of the disease as the thyroid "reboots" and the disease reverses. I'm hopeful and cautiously optimistic.

- My thyroid cyst grew so much while on the levo, that I suspect my thyroid gland as been cannibalized greatly and may take many years to recover even in perfect conditions.

- I haven't lost any weight. :-( I tried a week if dieting and calorie counting, but feel it wasn't much of a difference from my normal food intake, so my food intake is fine and I should be losing.

- I'm still limited on exercise due to the foot injury, which is slow to strengthen. Doing too much exercise cases injury. The lack of exercise doesn't help. I suspect increased exercise would dramatically accelerate results.

Thanks for the update. I can't think of anything else to suggest to help, except possibly to ask 'have you ever been tested for osteoporosis'? I'm really interested to know how the amono acids do long term.

Hi Grainne, it's worth testing your vitamin and mineral levels via a blood test.Research I've read suggests 200mcg Selenium is important for thyroid health. Ferritin level has to be 70+ for the body to be able to process thyroxine. Generally important from an immune system point of view is Zinc and vitamin E. Also need magnesium. I've found the 50+ vitamins have the best range of vitamins and mineral at the lowest price.

Hang in there it is demoralising not to lose weight after all that effort, however, as Catherine says, the health benefits you achieve long term will be worth it. Take a look at a photo of yourself before and after - you must look more toned. Working out will have helped the level of 'lipids' in your blood and reduced the chances of stroke, blood clot and thrombosis; cutting out fizzy drinks will have reduced your chances of getting diabetes - all hidden benefits, so well worth continuing. Have you ever had your T3 level tested? It may be that you are a poor converter of T4 to T3 (I am), in which case supplementing with liothyronine (T3), or switching to a natural desiccated thyroid (I'm on ThyroGold), will help. Well done, and keep it up! But also tell your GP what you've told us so that they can investigate further.

I haven't been tested for osteoporosis. I'd never had any broken bones until last year when I broke multiple bones in my foot. Likely due to bone loss caused by the levo, I think. So I don't feel the need to test.

Thank you Barbara for your reply. I've made an appointment to see my GP (2 weeks wait) and I'm expecting my Endocrinologist to get back to me next week. I've not been taking vitamins and was original very deficient in D3, B12 and folic acid (caused by the celiac). So I have reintroduced them into my routine. I've also developed a rash on my neck and chest and have been experiencing hot flashes (I'm not menopausal, confirmed by Gynaecologist). I've also been feeling very depressed, I'm on Citalopram and have been for several years but have never had such an ongoing black period since I started taking them. I'm also finding it very difficult to sleep and am only getting 2 or 3 hours per night for the past few days. Anyway I believe it's all linked to the thyroid medication but I will not do anything until I've had my bloods checked and spoken to my doctor. Thank you for your advice. Gx

Hi if you're low in any vitamins and minerals you will feel very poorly - fatigue, depression, insomna are all symptoms of deficiency. Vitamin D, vitamin B12, folic acid (folate deficiency) and iron are the main ones. There are others that are important for the immune system to work correctly such as selenium, zinc and vitamin E. In some countries there is low iodine in the soil, which results in food low in iodine, which causes iodine deficiency, which causes thyroid problems (however too much iodine is toxic to the thyroid). So basically, to feel better, you need to fix these deficiencies. If you are deficient you will need high doses of the vitamin/minerals from your GP as you wond be a ble to get enough from food or a multivitamin e.g. doctors can prescribe 10,000 units of vitamin D whereas multivitamins only have about 10. Such a high dose is only neefed for a month. A blood test is used to check if you are deficient - if you are in the UK, your GP can request this. One blood test can check them all.

A rash on chest and neck needs checking out by your GP. Is it itchy? If so, I get such a rash when I've eaten something I'm intolerant to. It may be difficult to identify the cause, as symptoms can appear up tp 3 days after you've had the food or drink responsible. It can be something like 'nitates' which are preservatives used in many different foods/drinks (it is for me - I found this out by eating tinned corned beef which only has beef and nitrates in it).

With so many things to ask your GP about, it's a good idea to write down (typed if possible) your symptoms and add at the end of the list 'I was wondering whether I am deficient in any vitamins and .minerals sich as D, B12, folate, iron etc'.

I do a 'things to discuss' list and then put bullet point headings such as:

'- vitamin & mineral deficiencies

- rash on chest anf neck

- thyroid

Sympyoms are:...'

Also, your GP is likely to ask you to go for a blood test then see them for the results, so its worth booking now, a second GP appointment for a week after the first GP appointment to review the blood test results. You can always cancel it if it's not required (make sure you do). Note you will need another appointment to review the vitamin D result as this takes about a month to come back, though you can ring the doctor's for the result (if you do this, ask your the actual result and the range - don't just accept an answer of 'you're in range'. The reason for this is we're all different and you might be having problems if you are in range but at the bottom of the range. Also if you're at the low end at this point in winter, it's likely you are going to be deficient in a few months time as there is very little sun around (the body makes vitamin D from being exposed to sunlight) - note it's important not to burn. Keep us posted on how you get on.

Gosh thank you so much Barbara for such a detailed response. The list of questions and symptoms is a good idea as I often get intimidated at the doctors. I always feel I'm causing a problem. But if I've got it all typed out I will stay on track. I may even email the endocrinologist before I see him so he can review the systems. I'll let you know how I get on. Thanks Barbara. I appreciate it. Gx

As you still have your thyroid, your situation is different to mine as my thyroid is completely defunct.

Hi Barbara, I didn't realize your thyroid has been removed. Hmmm. Yes, Hashimotos disease does alternate between hypo and hyper, making it near impossible to diagnose with blood tests. With or without a thyroid gland, the problem that caused the disease needs to be addressed.

The thyroxin produced by the cysts is often dysfunctional, causing more problems.

Hi Catherine, sorry if I gave you the wrong impression, my thyroid hasn't been removed. However it was 14+ years from first symptoms to diagnosis so my immune system had plenty of time to kil it off. When I was diagnosed my doctor said he'd never seen a TSH that high.

Hi Vixka, people post similar posts to yours frequently on this site. It seems to be a typical side effect that worsens with increased dose.

Many people don't get relief from the levo and suffer from severe side effects and accelerated disease advancement while taking this drug. 

Please read ear through the many posts here to see  what other people experienced with the levo.  It will save you a world of pain!