200mg Levothyroxine, always in pain.

[maswys92]

Hello, just wanted to see if I could get anyone else's opinion on Levothyroxine.

I'm 23 years old, and I've had underactive thyroid for nearly 4 years now. I'm on 200mg at the moment, and I'm constantly in pain.

The pain started 2 years ago, when I developed leg, hip, ankle and rib pain. I then got diagnosed with Fibromyalgia (9 months later) , and put on anti depressants.

After realising that the medicine was making me worse, I stopped and informed my doctor.

After crying pretty much every visit, and changing GPs three times I was referred to a Rhuematologist and me and my partner have been paying privately for help.

They tested my Vitamin D levels, and mine were 18 so I was out on 20,000 Units of Vit D supplement and sent away.

I returned and still no change, I almost felt I was still getting worse. I was exercising every single day and doing weights and cardio to ensure I was strengthening my body.

They then told me that it was both Fibromyalgia and Osteomelacia.

I had so many blood tests and everything came back "normal" for my Gut, Lupus etc.

But now, I feel as though it's my Thyroid that has causes these problems. I have the following systems:

Chest, Rib, Wrist, Leg, Hip, Spine and foot pain (every single day). Sometimes I feel like my bones are literally about to shatter.

I also have blurry vision and sensitivity to light, also at night I get excruciating eye pain.

I had my eyes checked on Friday, and he said the health was fine apart from being short sighted, but he was converted of my thyroxine dose.

I also slur my speech, constantly feeling like I can't speak, brain fog, upset stomachs, headaches, jaw pain, chest pain, rib pain.

I have taken myself off Levothyroxine for the last 1.5 weeks, I know this is not recommended but my symptoms have not changed, I just feel more 'groggy'.

Please can anyone share their opinion/experience on this?

Help is much appreciated!!

[pugdogs10]

Hello...have you been tested for B12 deficiency, lots of your symptoms sound like the ones I had when first diagnosed with PA. Thyroid and PA symptoms do overlap a lot and many people with hypothyroidism also have Pa. Certainly worth checking out. Very best wishes, hope you feel better soon.

[bantam12]

Have you had calcium and parathyroid tested ? your symptoms, particularly the bone pain and low vitd could indicate hyperparathyroidism.

[SeasideSusie Remembering]

maswys92 You say you were put on 20,000iu Vit D. Was that daily, weekly or what.

I did a private Vit D test and mine was 15. I put myself on 40,000iu D3 daily for 2-3 weeks and got it up to 200 in 2.5 months. I then dropped it down to 5,000iu daily and it settled at 150. I now take a maintenance dose as I want to keep it between 100-150.

We're you told what usually causes Osteomalacia? It's usually lack of Vit D.

I'm wondering what dose of Vit D you are now on and what your level is at the moment, because I think all your bone pain is connected with that.

Did you know that when taking D3 we also need to take K2-MK7? Most doctors don't seem to know this. Vit D aids absorption of calcium and K2 directs the calcium to bones and teeth rather than arteries and soft tissues.

I think your eye problems are also connected to lack of Vit D.

Do you have your thyroid test results? Can you post them with reference ranges? Let's see what's happening there, because you may not be adequately treated which will cause problems and brain fog is one.

I won't link to any articles on Osteomalacia nor Vit D because there are so many, you may want to Google and pick some from reputable sites and have a read. But I will link to this one as it is on HypoparaUK and ties in with what Bluebug has mentioned hypopara.org.uk/hpth.php?id...

[bantam12]

I wouldn't recommend raising your vitd dose until you know your calcium level, if this is high then you don't want to be on high dose supplements.

[SewingBee]

@ maswys92

I was really sad to hear your plight. Coming off of thyroxine isn't the answer. I would suggest you have bloods taken every 2months and have your hormone levels checked. At the moment you won't be making any of the right decisions and you'll need a good GP to guide you so work on finding a good one or take someone to your appointments who can do your talking (not making your decisions).

I finally decided to take my thyroxine at night and it has worked so much better for me. I can take iron and joint and vitamin supplements in the mornings and eat healthy stuff up until four hours before I take my thyroxine at 10pm. I'm feeling in far more control of my health now but I will still get bad days when I'm fuzzy and lethargic along with all the aches and pains and blurred vision.

Sadly there are very few Doctors who have a clue of what we go through unless they are sufferers themselves and not all medicated hypothyroid sufferers have these problems.

You will feel totally despondent but it will always be up to you to find your own solution at a time when you are anxious and confused. Don't assume that loved ones will have the answer for you.

[Hidden]

Oh bless you. If it's any use try to see a random gp and not the same one at your surgery. After a year of hell that's the thing that got my treatment moving.

You don't have to suffer. Tell the doctor everything. They must help you.

Good luck with it all. Big hug.

[fortunata]

I feel so sad for you and know something of what you're going through. I used to take Levothyroxine... Doses as high as 200mcgs... and I used to get a lot of bone pain. Especially in my feet. I used to tell my husband that my legs felt like brittle sticks of celery that were about to snap.

My life changed once I stopped the Levo and began to take Liothyronine (t3) only.

I also found out I have a DIO2 conversion problem and the Levo (T4) that I was taking wasn't converting well to T3 in my body. Once I was on Liothyronine, the bone pain I was feeling gradually stopped and now I feel extremely well.

I wish you courage in getting to the bottom of your own situation. Xx

[Scouser58]

Hello maswys92,,,,you could well need to see and endo to have your levo adjusted, this would be done in conjunction with the thyroid test results,,,,200mg does sound very high,,,have you had it adjusted in the previous years?,,,,get an expert specialist on the case and then they can advise you to better balance,,,,ttfn from Karen.

[maswys92]

Hi All,

I know it’s been 4 years since my last post, and I’ve only just logged back in and seen the responses. Thank you all for your kind words of encouragement and advice, it’s all very appreciated.

I thought I would just post an update for you, incase you were interested in what happened or this could possibly help you.

After losing the will to carry on, my partner researched into any and every issue I could possibly have and we cross referenced it all with doctors we saw.

We finally found a product called NDT, Natural Desiccated Thyroid. This isn’t available on the NHS unfortunately, you can only get this on private healthcare when you are placed on the “Named Patient Only” list.

“NDT is derived from the dried (desiccated) thyroid glands of pigs or cow and provides T3, T4, and other thyroid hormones found in the human thyroid gland”.

We met with a new endocrinologist who was immediately concerned over the level of Levothyroxine I was on (at this point they had raised it to 250mg).

I was also 7st at this point at 5ft 3 so I was very underweight but still eating plenty. I also had large swollen lymph nodes around my body. After CT scans/numerous blood tests/MRIs/Ultra Sounds etc. It turns out that I had caught EBV which turned to mononucleosis and wiped my immune system. My under active thyroid was actually Hashimotos Hypothyroidism.

Doctors were increasing my Levothyroxine T4 but I couldn’t convert it to T3.

I was put on a course of NDT and I was told to wait 3 months for results because Levothyroxine needed to get out my system and my body needed to adjust to the new medication.

Those 3 months were horrible thinking it was all for nothing, but honestly - I’ve never felt any pain since. It feels like that scared 23 year old girl in chronic daily pain who wrote the first post is completely gone. I’ve since travelled the world, climbed mountains and done things that I used to think would be impossible to do again.

NDT may not work for everyone, and you should consult with an endocrinologist first - but, it has completely changed my life. I will never go back on Levothyroxine again.

Thanks again for all your comments, really appreciate the time you all took to come back to me.

X